08/10/20 – A Bertie Blip – 3yrs 2mths

Hello its me again – you haven’t heard from me for months which is a good sign!

I hope you have all kept safe and well during this desperate year. I just have a little update for you.

A week into lockdown, I started suffering chronic back pain, turning acute and as of now remaining chronic. That same week I suffered 4 days of COVID symptoms – persistent cough and trouble breathing, a week after returning from a COVID hotspot in Austria. This happened again at the end of August. Both times COVID test was negative. Also a small swelling in my neck.

I didn’t have my normal review with the Doc in April as everything was cancelled, so it was not until early September I actually had a review with him by phone. I haven’t had anything to report to him since finishing Chemo and and Radiotherapy in early 2018. So the things above were enough to prompt him to order an urgent CT Scan, although my blood counts have just crept into the lowest level of acceptability. Oh my, this is alarming , the panic setting in immediately. It seems as if something is up, maybe Bertie has sprung into life and has seeped into my bones. I always knew this day would come, it was just a question of when. My imagination ran wild and I assumed I would be one of those patients whose cancer had advanced because of COVID delays.

I had the scan nearly 3 weeks ago now and only got the results yesterday after chasing them down.

It seems I have degenerated lumbar discs, exacerbated by RCHOP chemo (remember all my broken bones). So I along with a good proportion of the population I have a bad back and there’s things I can do to mitigate this. Apparently I also have a Sentinel Loop, an intestinal inflammation. Because I am suffering no issues with this, they aren’t going to investigate further, although I’m minded to disscuss this with my GP.

The main outcome though of the Scan is that there is no evidence of Lymphoma beween my nose and knees. I can’t tell you what a relief this is to hear – its been a fraught 3 weeks. I live to fight another day.

Just thought you’d all like to know.

Tina xx

27/01/20 – Bye Bye Bertie – 2 yrs 6mths

Howdy folks……. I said in previous posts that no news is good news right?  Finally, finally my dream of having nothing to tell you is a reality.

After 2 1/2 years of treatment, 204 medical appointments, 675 engagements with medical staff, I received my final treatment last week – and have been celebrating ever since.

I have neither fought nor battled cancer, no-one does, it is endured and you suffer greatly.  I have endured 2 x CT scans, 2 x PET scans, echocardiograms, multiple x-rays, invasive biopsy, heavy duty chemotherapy, steroids, total hair loss, cracked and bleeding, gums, hands and feet, phlebitis, peripheral neuropathy, pulmonary embolism, neutropenia, lymphopenia, multiple hospital admissions, radiotherapy, loss of bone density, therefore broken ankle requiring artificial brace surgery, broken wrist requiring plating, immunotherapy and a touch of mental health help – who the hell wouldn’t after 2 1/2 years of all that? I now have enough metal in just about every bit of my body to make Pat rich if he cashes me in for scrap.

People whose lives haven’t been touched by cancer assume that once treatment has ended, everything goes back to normal.  But they are so wrong, that is when the reality of what you have been dealing with physically and mentally crystalises and the healing of both can begin.  My life will never be the same again and I have to try and find a ‘new normality’  In the UK, patients are often recommended to read this paper ‘After-the-treatment-finishes-then-what” by Dr Peter Harvey, it is extremely pertinent if you feel like reading it.

If you watch Cold Feet, then the episode of 20 Jan, when Faye Ripley’s character is describing how she feels in remission, was, to a cancer patient, realistic, heartbreaking and made me cry.

I tried to find words to describe the end of my treatment and couldn’t, so I invented a new one and describe myself as being in a state of jorrification. Experiencing both joy and terror at the same time.  Joy that treatment is finally over, terror of what’s to come and having my drugs safety blanket removed.  They haven’t made me go completely cold turkey though, I will see Dr M for blood tests and a check up every 3 months for 5 years, so January 2025  is my next target.

In the summer of 2017 I (and my family) were faced with the unimaginable dreadful news that I had cancer.  Without treatment I only had a couple of months left and we truly thought that I wouldn’t survive.  But because of the magnificent advances in cancer treatment, I did survive and will henceforth thrive.

Not relapsing during the 2 years of immunotherapy is significant, as sadly some people do.  It means my prognosis for this incurable cancer is considerably improved – yay!

It has never ceased to amaze me that this blog is viewed from all corners of the earth, Pakistan being the latest country to light up my blog map. It just demonstrates that people touched by cancer all over the world are endlessly searching for information wherever they can find it.

Unfortunately, in each blog post, I have to mention sad news, and this one is no different.  We said goodbye to Peter today at his funeral, our vivacious neighbour and friend who sadly succumbed to a brain tumour.  He is now at peace.

I send heaps of hugs and positive vibes to my dear friend Christine, who suffered a terrible stroke at New Year, recovering slowly in hospital – love you and see you tomorrow x

This is countered by Susie, my cousin’s wife who has been declared free of breast cancer, which is wonderful news.

During the funeral service today I was and still am suffering acute pain spasms under my ribs. I am really hoping its because I overindulged yesterday on Richard and Eileen’s home made truffles and is not a sign that Gertie, Bertie’s sister is growing.  Such is my paranoia that any ache, pain or lump is instantly alarming.  I’m reliably informed these thoughts will diminish over time.

So, I reach the end of what I have to tell you, my final post of this chapter of my cancer experience, and I hope with all my heart that we won’t meet again until 2025.

Adieu, my friends, and thank you for reading.

Tina xx

23/08/19 – The Sting in Bertie’s Tail – 2 yrs 1 mth

NHS Staff 31, cumulative 588 | Private 18, cumulative 64

Its been 5 months since my last post and no news is good news, well almost. I dream of having nothing to tell you…… maybe that will happen next year.

Either my immunotherapy treatment or Alendronic Acid to increase bone density – chemo leaches calcium from your bones apparently, is causing my hair to fall out very slowly.  Thanks a bunch Bertie.  I’ve been tested for Thyroid issues, Zinc, Magnesium and Iron deficiency, all normal.  Because this also happened for about a year and a half before my diagnosis, I attributed it to the cancer.  So you can understand my automatic reaction and low level panic is because I think Bertie is growing again.  I have however been given a thorough physical examination by Dr M and my pre-treatment blood tests are where they should be i.e. nothing to see here.  At the same exam, I mentioned a persistent cough I had and was sent straight down for a chest x-ray. Ditto, nothing.  So pending a trip to a dermatologist, we are blaming the meds.

I compare this almost trivial issue to my online buddy, who you may remember me mentioning early on. She had a similar diagnosis and almost identical treatment to me but 3 weeks ahead.  Unfortunately, she relapsed at the end of last year and has suffered terrible complications and spent weeks in hospital.  As I write she is undergoing a stem cell transplant.  Lynda, my thoughts are with you.  A little hair loss is something I should be grateful for compared to the alternative.

I’d also like to mention Nick, my friend who recently received a nasty diagnosis of stage 4 lung cancer.  By the miracle of science and the early access to medicine scheme, he is receiving a relatively new targeted oral drug, Alectinib – not chemo – and is making great strides in his recovery from an awfully bad place. Stay strong.

My appointment tally is nearing 200 now and the frequency of my hospital visits can best be demonstrated by again bringing up the little old lady who sits on the charity stall in one of the hospital corridors.   Remember her? Hello Pet she says to me every time I pass.  A couple of weeks ago in for routine blood tests, she said, Oh hello pet, you’re here for your cancer and chemo again.  Bear in mind I’ve never had a conversation with this lady…. she doesn’t miss a thing going on there even with hundreds of patients milling about.

My broken bones are healing nicely, my hand is still stiff and I’m left with a trigger finger and the ankle/foot is well on its way to returning to normal, though I still have physio.  Lets hope that is all behind me now.

Additional countries lighting up my blog world map with views since March are Botswana, Estonia, Greece, Iceland, Jersey, Latvia, Macau, Namibia, Singapore, South Africa and Zimbabwe.  Some blog views from Russia would be nice.  I know Macau isn’t strictly a country, but WordPress identifies it as such.

So some news from my cancer world, in which I’m being led down pathways I never imagined I’d go.

Along with a couple of others, I was invited to join the Patient Advisory Group at national charity Lymphoma Action and attended the first meeting last month in Manchester.  The purpose is broadly to provide valuable insights to help shape Lymphoma Action’s strategic plans.  It feels like the right thing to do.

In the Spring, I successfully applied for a role on the NHS National Cancer Programme Patient Forum.  The UK is divided into 19 Cancer Alliances, each delivering the Cancer Programme with the hospitals in that Alliance.  The Forum has 2 patients from each Alliance as their reps.  Obviously I am representing the Northern Cancer Alliance.  We will be working on various projects and I am to obtain feedback on them from my cancer network, collate and feed up to the programme.  It meets twice a year in London and Manchester with plenty going on inbetween via email and conference calls.  It is really interesting stuff.  The first project I have contributed to is the implementation specification for Cancer Rapid Diagnostic Centres to be introduced across the UK from 2020 onwards by the Cancer Alliances.  The report has been published Click here if you are interested in reading it.

I have also been invited – along with many others to the Macmillan Cancer Voices event in Manchester next month and I’m very intrigued to see what that brings.

Finally, this is where I ask you to keep everything crossed for me. At my 9th (of 12) immunotherapy treatment a couple of weeks ago, I was having a chat with Dr M.  He said that if I have no relapse for 2 years since going into remission, the subsequent chance of relapse plummets.  That’s January 2020 for me and the next milestone that I am inching agonisingly towards.

See you in 2020!!

 

 

26/03/19 – Weary – 1 year 9 months

NHS staff –  56 (again, sorry, NHS), cumulative 557.  New stat. – Private – 46

New stat. Medical appointments to date since July 2017 – 167

I know its been 3 months since my last update and you would think no news is good news, right? Wrong, I’m afraid.

I’ll start with the bad news.

If you remember I broke my ankle (fibula, so technically leg) at the beginning of last August.  I have been in constant pain since and have not really been able to do much more than go for a walk.  The NHS in their wisdom declared it clinically healed in December, but I was still not discharged from fracture clinic and was very unhappy with the results, I knew something was still not right.  I mentioned this to Phil and Lizzie and they checked out the x-rays for me and strongly suggested I ask for a 2nd opinion. My GP was on the case and I eventually got an appointment with Mr Limaye at North Tees on this coming 2 April.  You can see for yourself – it’s not rocket science, and it turns out walking around on a broken leg for 7 months is not good for you.

7th August 2018              20th December 2018

Far from being healed, it’s now worse.  My private physio refused to treat me further on seeing the x-rays and suggested I get a second opinion privately immediately and recommended, you got it Mr Limaye.  Rather than wait for the April appointment, having lost 7 months of my life to my ankle, I took this option.  It was x-rayed again at the private Woodlands hospital and Mr Limaye confirmed what I thought.  It was far from healed and if nothing was done, I would be in pain for the rest of my life.  Now, I could wait and get on an NHS waiting list which could take many months more, or I could pay for private surgery (ouch, ouch, ouch) and get my life back.  On 13 March I underwent the surgery, so here’s the obligatory hospital shot a couple of hours after the op.

Mr Limaye lopped off the tip of my fibula, implanted an internal brace and reconstructed the lateral collateral ligament complex.  I am not weight bearing for about 3 weeks, and because my newly plated wrist cannot handle going far on crutches yet, I am housebound and confined to a wheelchair.  Thanks for the loan Vince and Marian, its been a godsend.

I stayed overnight at the hospital and the day after discharge, I think I was still a little woosie getting out of bed up onto crutches.  I lost my balance and fell sideways – think Del Boy in Only Fools and Horses falling through the bar hatch – my fall broken by the corner of a wooden laundry box – nasty bruise on my side – then further broken by my poorly wrist then finished off by landing directly on the surgery site of my ankle, squashing a crutch between me and my arm for good measure – another spectacular bicep bruise.  Luckily this catastrophe happened just before Pat set off to work.  We were very concerned this might have compromised the surgery so phoned the woodlands for advice, come in to be checked over they said, so we did.  We waited 10 minutes in the ward reception and just as the doctor was approaching me, I decided to pass out cold. Apparently the doc was very alarmed and it was like a scene out of ER, doc calling for nurses and oxygen.  I came to about 5 minutes later, no harm done.  They took another x-ray of my ankle and confirmed no harm done to that either, so home and recovery.

Of course, we were meant to go skiing 10 days after the surgery with a bunch of friends , so I have had to cancel my now 4th holiday.  Pat has gone as there is no point us both missing out, so here is me home alone.

Thanks also to Clare J for the loan of an amazing bathlift which has meant all through my 2 lots of surgery I have been able to keep clean with the help of limbo limb covers.

I will of course be corresponding with the NHS about the less than sterling treatment of my ankle break.  Its tricky because they also saved my life.

On the plus side my wrist is healing nicely I think, see below.

I had to have a dexa bone density scan in January because I’d had 2 low trauma broken bones in 5 months and the fear was I had developed Osteoporosis either as a result of chemo or the fact that I’m a fifty something female.   Results showed that I was on the cusp of Ostopenic which is not as bad as Ostoporosis.  I have to take Alendronic Acid for 5 years to build bone density and take vitamin D probably for the rest of my life. The cause is not known.

To add insult to injury, about a month ago, a non painful hard lump popped up on my thumb.  I was sent for an x-ray to see if it was cancer related, but I got a phone call about an hour after surgery to tell me its mild Osteoarthritis.  This may be a late side effect of chemo which I’ll need to discuss with the Haematology team at my next review.

So, on to the next thing.  Its really no surprise that having cancer, chemo and all its side effects, a pulmonary embolism, radiotherapy, multiple scans of every kind, various clinics, endless blood tests, breaking an ankle then a wrist, 2 surgeries and cancelling multiple holidays, being in permanent pain and losing nearly 2 years of my life is really not good for the soul and one person can only take so much.  I was referred by my GP and haematology team to a mental health team and have been diagnosed with moderate to severe depression and mild PTSD.  I am on a special cancer patient pathway and am receiving weekly one to one psych sessions at home, probably for the next 3 months.  Hopefully they will sort me out.

That’s all the not so good news and to lighten the mood, here is an art installation that I’ve entitled ‘ Contraption Art’ consisting of all the splints, braces etc and paraphnalia I’ve accumulated.  Inspired, yes?

Now for some more uplifting stuff.

I’ve had my 6th (of 12) Immunotherapy treatment – only another year to go.

Last summer, Macmillan sent a team up from London to do a day’s photoshoot with Pat and I to feature in a new booklet that’s just been published.  We had to pretend we were camping in the campervan on the village green (sorry councillors).  Anyway it was fun and here is the end result:  MAC17023_Will booklet_V4

Here is a little something that my running group published on their website: Sisters R Doing It 

Lastly, I with another volunteer was interviewed by BBC Tees radio for their breakfast show.  It was about the Support Group we set up for Lymphoma Action – now 2 meetings in. BBC Tees interview.

I want to thank again my family, friends and neighbours for taxi services, chores, visits and food parcels over the past 20 months, I really do appreciate it.  Hopefully that part of my life will be behind me in a couple of months.

Special thoughts go out to cousin-in-law (Is that a thing?) Susie in Oz undergoing chemo for breast cancer, Ken, about to undergo Radiotherapy and Mary just out of surgery. Positive vibes to you all.

Finally, thought of the day to leave you with by Henry David Thoreau, thanks Pat:

‘You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land.  There is no other land, there is no life but this’.

Ciao til next time. xx

Thu 27/12/18 – Bittersweet Remission – 1 yr & 6 mths

NHS staff –  109 (which I’m rather embarrassed about!), cumulative 501

I know its been 4 months since I last spoke to you, so I thought I’d round off the year with a brief update on my NHS season ticket status.

Its been 18 months since cancer was discovered in me – how time flies when you’re having fun – and I am just about 1 year in remission. I’ve had 3 immunotherapy treatments, including one today, since my last blog and all is going well at keeping the cancer at bay.  This should be a time of celebration for me, but it isn’t to be.  After losing a year of my life to cancer, I was making strides in regaining some fitness this year when I broke my ankle, putting me out of action for 3 months. I was just recovering from that when I slipped on black ice and broke my right wrist in 3 places last week.  On Sunday I was admitted to Darlington Hospital for surgery to insert a plate into my wrist and was discharged on Christmas Eve. I’ve spent 7 of the last 11 days either in or at hospital which dampens the festive spirit somewhat.

Needless to say, I’ve been feeling pretty ticked off and trying to remain positive in the face of adversity has temporarily been kicked into touch.  I think this run of events has finally brought home to me just what I’ve been going through. I am trying not to linger too long in this frame of mind as many are so much worse off right now: My friend Chris who I mentioned last time has sadly succumbed, the 20 year old daughter of a friend of a sister-in-law was killed in car crash a few days before Christmas and I just found out a friend lost her dad on Christmas Eve, to name but a few.  So whilst I am teed off, I am thankful to still be here and my thoughts now are with the friends and family of those who are not.

Moving on to more constructive thoughts, current statistics show that 1 in 2 people will be affected by cancer at some point. By default that means my friends and family.  My type of cancer means I will probably relapse at some point in the future. This all means I have a vested interest in helping in any way I can to improve cancer services provided to patients.  So to while away the time whilst hampered by a broken ankle, I have been helping the National Charity, Lymphoma Action set up a new support group for patients in the Darlington area and surrounding 20 mile radius launching in January – details here.  I’m very excited, as I really could have used such a group in 2017 which wasn’t then available.  Press releases are being issued now. I have also busied myself attending cancer related conferences, courses and workshops – its a whole new world is Cancerland.  I am now known to this new to me community as ‘Lymphoma Lady’, which is slightly better than lymphomaniac or folliculite.

As a result of one of these events, I was invited to join the County Durham and Darlington Cancer Patient Group which works with the The Northern England Strategic Cancer Network and Network Service User Partnership Group including the Northern Cancer Alliance (a grouping of all NHS Trusts in the North) and whose purpose is to influence cancer services.  Now this is right up my street, as I always have something to say and I am in my element.  I have already been to speak at and contribute to an NHS Workshop aimed at creating educational videos and podcasts for GP’s, their staff and patients with regard to the 2 week referral process for suspected cancer patients.  A whole host of medical professionals from Consultants, GP’s, Radiologists, practice staff,  specialist nurses, Macmillan, CCG people etc were there and I was blown away by how much work is going on behind the scenes to continuously improve services by very dedicated people.  I really hope I’ll be doing more of this sort of thing.  Although I have turned down an offer from Macmillan to be one of their online Community Champions, as I prefer not to be obligated to contribute, and will absolutely continue to do so on my own terms.

The NHS provides cancer screening programmes for breast, bowel and cervical cancer.  As undignified as it is I have recently undergone Cervical screening and Pat bowel screening.   I am sending a plea to those of you who have refused to take up a screening offer, please think again about accepting, they are there to save your life, I don’t want to be mentioning you in future dispatches.

Now a request for your help, unfortunately only applicable if you are 55 or under.  I mentioned previously I will relapse at some point, but I live in hope of a cure for me.  Meanwhile, the advances in cancer treatment are seriously rapid these days, with stem cell therapy being at the forefront.  Please could you register as a Stem Cell Donor with DKMS, whose strapline is ‘you will be on standby to save a life’.  They send you a swab in the post which you just run round your mouth and send back to them, simples.  I will probably need a stem cell transplant at some point in the future so would like the donor bank to be as wide as possible.  My friend Richard was waiting a while for a suitable donor, and when someone new registered one day in Germany, bang, it saved his life and he is walking and talking today.

Phew, its been tricky, typing all this left-handed and all that’s left for me to say is I wish all of you health and happiness for you and yours in 2019.  I leave you with a suggested  corny song to listen to with a strong message- Tim McGraw – Live like you were dying – google it!

 

Sun 26/08/18 – Break a Leg – 1 yr, 5 days

NHS staff 17, cumulative 392

Blog views from Honduras and Jamaica add another couple of countries to my world map, not that it means anything, but its interesting to me.

Ok, its been quiet on the cancer front since my last post, but I have a few things to update you on, some cancer related and some not.

I attended a whole day, ‘Live your Life workshop’, at the Jesmond Dene hotel in Newcastle,  provided by Lymphoma Action and aimed specifically at Lymphoma patients to provide information and give an insight into life after remission and what to look out for if it reoccurs. To be honest, I didn’t really learn anything new as I spend hours on the internet researching it anyway.  But, as ever with these workshops, the most valuable outcome was spending time with other Lymphomaniacs.

About a month after receiving my first immunotherapy treatment,  a large mole on my back turned red.  A visit to the GP ensued, no concern, follow up 3 months later with GP, no concern but he sent photos the same day to a specialist who referred me to, I kid you not, plastic surgery. Further investigation revealed plastic surgery also deal with melanoma etc, which was quite alarming.  Anyway, I’ve been this week to plastic surgery who tell me I don’t have melanoma, which is a relief.  The Rituximab immunotherapy and my lack of immune system may have triggered some sort of reaction.  Its good to know I’m being monitored so carefully though.

Pat & I went to Anglesey in the van to pick up a couple of new sea kayaks we had ordered and then spent a couple of days in Snowdonia paddling them, followed by a flying visit to see my dad in North Wales.  To keep up my track record of being a drain on NHS resources, I only went and broke my ankle, rolling it on an uneven piece of ground in an unlit farmyard (entrance to campsite).

If supported, I could stand up, so we concurred it wasn’t broken, and didn’t go to hospital, but I made an appointment with the GP for 4 days time and spent 4 days hobbling painfully around on it. It was tremendously painful, swollen and bruised. Once at the GP’s, she sent me straight to A&E where an X-ray revealed a non-displaced break of the Fibula, a Weber type A break if I read Dr google correctly.  Its not the weight bearing bone thankfully, so I had to wear a Moon Boot for 3 weeks and it should then heal itself after 6 – 8 weeks or so.  As I’m over 50 and have had a low trauma impact, I’m to be referred for an Osteoporosis assessment – more NHS time!

It really is a nuisance not being able to drive, although I have been able to do one-legged Pilates with Esme at Esme Wellbeing Bodywork.  Hobbling in my Moonboot to Pilates, about a 100 yard trip, 2 cyclists went whizzing past and one shouted ‘Robocop’ at me – charming.  So the highlight of the last 3 weeks (apart from the Lakes – below) has been Pat taking me to Sainsburys and Christine taking me for a day out to Kirk Levington Prison – they have a nice cafe!

The most depressing thing about my ankle is the fact that for the second year running, we have had to cancel our holiday plans again.  We had planned 2 weeks, a few days in Marlow taking in dinner at Tom Kerridge’s Hand and Flowers to celebrate our 25 years Silver Wedding anniversary, then a quick ferry over the Channel and onward to Germany, then a final week in the Netherlands, cycling and kayaking.  I am fated not to leave the UK this year.  For our anniversary, we made do with an overnight stay at Sharrow Bay on Ullswater, which was a lovely treat.

I felt very sorry for myself for one day feeling that life was being very unfair, first cancer, now a broken ankle, then I remembered that I am very thankful to be alive.  My friend Chris has Prostrate cancer which had already spread before it was caught and he is now deteriorating which very sharply puts things into perspective.

Finally a bit of promotion for Macmillan Cancer Support: My lovely wig and shiny new Rockpool Taran 16 sea kayak take pride of place in an advertising feature in Metro Newspaper this week.   Article in Metro 22 August 2018

 

 

 

 

 

Tue 03/07/18 – ‘Don’t panic Mr. Mainwaring’ – 11 mths 17 days

NHS Staff 7, cumulative 375

We’ve just had 5 days in the van on a site next to the Lancaster Canal.  Can highly recommend the area – topping up the vitamin D levels.

I forgot to mention last time that I had finished attending the Macmillan HOPE course at James Cook hospital.  It was interesting, because although most of it I feel didn’t apply to me – fatigue, no exercise, depression, anger etc, it was again beneficial to be in the same room as other cancer survivors just having a chat, and the course content provided a framework for that.  It was interesting to note that a couple of participants benefited greatly and found it totally cathartic.  One was still totally angry about her cancer 4 years after and she had kept most of the bad stuff, physically and emotionally away from her family and friends in an effort to protect them.  This had the effect of making her family helpless, because she wouldn’t let them help her and it meant she kept it all bottled up with no outlet for the emotional aspects of having cancer.  It was her family’s job to protect her and they weren’t able to. The other was feeling very sad and angry, again due to keeping things bottled up and not communicating.

It reinforced to me the benefits of grabbing hold of all the support that is offered to you in your time of crisis, particularly getting together with other cancer survivors – sounds suspiciously like a support group.  My outlet has been writing this blog and talking about it with friends and family and as a consequence feel rather relaxed.

I’ve had the second of 12 immunotherapies today preceded by blood tests.  I have been feeling extremely well of late and was quite deflated to find my white cell count had dropped yet again and Dr M tells me this means I am Lymphopenic and still prone to infections and will be until 2020.  Further deflation occurred after learning that my blood pressure and temperature were also very low (although, perhaps its because I’m now an athlete!), but not yet alarming and I am also Vitamin D deficient to add to this week of ‘lows’.  So Dr M has prescribed some Vitamin D supplements for 3 months.  Some studies have shown that the long term outcome for FNHL patients is not as good if they are Vitamin D deficient.  It’s a catch 22 situation for me, keep the sun off to avoid skin cancer and die earlier through lack of vitamin D or risk skin cancer and live longer.  Hopefully the supplements will enable my body to catch up and I’ll avoid dying earlier.  I have decided to take in half an hour of sun every day if it shines without sunblock.  I already eat plenty of oily fish and eggs, so there’s not much more I can do on the diet front for Vitamin D.  Please no-one suggest liver, my post chemo taste buds couldn’t stomach it.

I had assumed on first diagnosis last year that my situation couldn’t have progressed without catastrophic consequences with Bertie already pressing on my organs.  I had never actually asked the question though.  Today I did in my review meeting with Dr M.  Without immediate treatment last year, I had had a few months left at most he said.  I kind of knew this, I think subconsciously,  my Abdominal Aorta was on its way to being crushed to oblivion, but to hear him say it out loud was completely shocking and it floored me.  I’ve spent the afternoon sleeping off the steroids and shock, the first time I have done so since the end of chemo.

‘Don’t panic Mr. Mainwaring’ as Corporal Jones would say, I am still 100% well, relaxed and happy and planning holidays.  That was just a half day blip.

I’m a member of a closed Facebook FNHL group started by an Australian woman and its now internationally populated with many contributors coming from the States.  An interesting discussion is the recent filing of over 1,000 lawsuits in the US against Monsanto whose major product happens to be Round Up weedkiller containing glysophate. The lawsuits claim Round Up caused their Follicular Non Hodgkin Lymphoma.  At the end of 2017, The European Food Safety Authority says glyphosate is unlikely to cause cancer in humans and decided not to ban it.  At the moment there is no conclusive proof either way, and Dr M reinforced that, but still I shall be spraying weedkiller with a scarf over my face from now on.  Meet my new ‘war on weeds’ get up:

Ciao for now. x

Wed 20/06/18 – Bookends and the Devil – 11 mths 3 days

NHS staff 3, cumulative 368

I keep thinking I have nothing left to tell you, but it keeps coming…..

In the last few weeks, there have been a few ‘Firsts’ for me and I will bookend those with a couple of endings.

Ending number 1 is completing the Rivaroxaban for the pulmonary embolus I had, let’s hope I don’t have to go there again.

Now for the Firsts:

For the first time since 21 July 2017, I am drug free, although I’m thinking I need something to make me run a bit faster.

This week has seen the first people in Jordan & Montenegro viewing my blog – another couple for the blog map.

I’ve had my first haircut in a year, not that you’d notice the difference. It was less curly for about 2 days, then reverted to brillo pad. For those wanting an up to date hair photo:

My eyebrows have grown back rather sparsely and after seeing a picture of Helen Mirren looking fantastic with hers, decided for the first time in my life to have them tinted.  Not too bad a result, at least they don’t look like 2 slugs.

I’ve had my first swim since last July – a complete joy to be able to do that again.

I’ve had my first holiday since last June. We went in the camper for a week to the Cowal Pennisula overlooking the Kyles of Bute with a bunch of friends – very lovely area and spent the time walking, cycling, kayaking, eating and drinking.

Unfortunately while there, I managed to pick up a tick in my side (I know Mike, Sick Note strikes again!).  After being successfully removed by Dr Evans, it seems I’ve escaped developing  Lyme Disease.

Undergoing Chemotherapy apparently changes your skin and it loses its ability for life to filter out UV sunrays.  I am therefore very susceptible to developing skin cancer. I now have to either cover up or wear factor 50 and wear a hat in strong sun.  Despairing of my lily white legs, I decided for the first time in my life to apply some fake tan.  Now, the stuff I bought is colourless when you apply it, so you can’t really tell where you’ve applied it and where you haven’t.  The result for me was an Epic Tan Fail.  I ended up looking like someone had chucked a tin of paint over me.  That’s the first and last time I’ll do that and resign myself to being a pale flower for the rest of my life.  Its better than the alternative of developing a brother Gerald for Bertie.

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I completed the Race for Life a couple of weeks ago with my Neasham Team.  It was a great day out, very emotional.  To date, including gift aid, we have raised a magnificent £4,376 which is fantastic.  Thank you to everyone who donated, it is very much appreciated.

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Dr Mounter has given me a Fit to Fly letter.  Great, I thought, I can start planning holidays now the first immunotherapy treatment is out of the way.  Wrong! – Travel insurance companies are the devil.  I am too risky apparently with my medical score being sky high.  White Cell Count of 3 doesn’t meet the minimum insurance requirement of 4 or above – therefore I am at risk of infection.  8 weeks has not yet lapsed after the end of blood clot meds.  I am not 2 years or more into remission and my immunotherapy counts as ongoing cancer treatment.  6 companies declined to give me a quote, 5 companies gave a quote of between £215 and £400 for a single European trip.  They won’t even think about giving me a quote for an annual policy.  Now listen up….. Eurotunnel quoted me £80 for an annual multi trip policy for a couple.  After declaring my medical history, I was told as long as my prognosis was not terminal and my consultant agreed to my travel, that quote stands – yippee!

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I had an End of Life Saving Treatment review meeting this week with my 2 lovely Clinical Nurse Specialists Anna and Nicky.  It was all very uplifting and positive.  I feel 100% well (I’ve done the Park Run this morning of writing) and so far the only lasting effects are tenderness inside my abdomen from Radiotherapy, mild neuropathy in my left big toe and a couple of fibrotic veins, which may or may not take years to heal.  I can live with that.

The nurses also gave me a book – Self Management of a Long Term Health Condition and asked me to review it for them. I am the first patient to do so.  If positive, they will order more copies for other patients.  This is my holiday reading for next week – 5 days in the camper over Lancaster way.  They are also setting up some groups in Darlington for specific cancers, Myleoma first followed by Lymphoma and asked if I would like to be involved – of course I would be delighted to as I feel I could contribute a lot of cancer wisdom from my experience.  I really hope that pans out.

Thats all this time folks – have great weekend.

Thu 10/05/18 – Immunotherapy begins – 9 mths 20 days

NHS staff 8, cumulative 365

Additional countries viewing my blog this time are Congo, Dominican Republic and Palestinian Territories – my world map is filling up nicely.

I learned yesterday why early returning hair on chemotherapy patients is called chemo curls.  One of the chemicals, doxorubicin destroys the structure of the hair follicles, previously round and taut like a beach ball, causing them to collapse.  New hair growing has to find its way though the folds and bends so ends up curly.  Eventually the follicles regain their structure, essentially re-inflating allowing the hair to grow straight again.  This is the reason my head currently resembles a brillo pad.

A friend I have recently met informed me that I was now classed as disabled.  Can’t be true I thought, but on further investigation, I learn that cancer patients are automatically classed as disabled under the Equality Act 2010.  My immediate thought was great, a blue parking badge, but in my circumstances I am entitled to exactly zilch.

We decided in April to try and book a holiday, which we thought we deserved – a bike and boat holiday on the Danube.  However as if life hasn’t been hard enough, travel insurers refuse to even give me a quote until a month after my first immunotherapy therapy in case something goes horribly wrong with it.  I’m too cautious to book a holiday without insurance.  I could just buy a normal policy online and not notify them of my cancer treatment, but its risky if something does happen and I have to cancel.  So we’ll stick to the UK for the time being.

I had to have blood tests a couple of weeks ago before staring the new treatment.  My white cell count was low at 3.8 (normal = 4 – 11) and neutrophils low at 2.2 (normal 1.7 – 7.5).  Low but ok says Nicky my clinical nurse. If she’s not worried, neither am I.

So on Tuesday, I turned up at the chemo unit in Darlington for my treatment at 9.45am.  Some paracetamol, anti-histamine and steroids were followed by an injection of Rituximab given slowly over 5 minutes into my stomach. Ritux sub-cu in nurse jargon. Then half an hour of monitoring before being allowed to go.  An hour in total – that I can handle every 8 weeks for the next 2 years.

I’m still getting my head around the incurable nature of my cancer. Research on-line dredges up papers saying you can live for more than 20 years, which at nearly 57 will do for me, other sites have tales of people relapsing and dying quite quickly.  Its individual, I might get hit by a bus, so I think its just best to live and not dwell on what might be.

Chatting to Sister Karen in the hospital on Tuesday, we remembered Sister Maureen Flatman who cared for me during my chemo up to December and unbeknown to me was suffering from stomach cancer.  She failed quickly and died in January.  A big group of nurses are participating in Darlington’s Race for Life in her memory.  I will see them there!

My Race for Life is developing nicely.  Currently 16 other ladies are signed up to the Neasham Team and I know of 3 others who are to join, so maybe there will 20 of us, it will be a great morning out and probably very emotional.  We have currently raised over £1,000, so thanks to all who have donated so far.  There is a month to go yet, so plenty of time to raise more.  You can donate here if you wish:

Donate to Tina’s Race for Life

It will probably confuse you if you look at the Neasham Team members.  There is another Tina Murray in the team, a friend in Darlington who was diagnosed with breast cancer around the same time as me last year.  She has also survived.  This is what your donations to Cancer Research mean – saving the lives of all the Tina Murray’s in the world!

 

Fri 13/04/18 – Wig For Sale – 8 mths 24 days

NHS Staff 6, cumulative 357

Eeek! I’ve had to use a comb for the first time in 8 months – what a chew on.  The chemo curls are starting to come, not obvious from these photos.

The blog has been viewed from Iraq, so another country for my blog map.

I’ve been able to try and get on with my life since the end of February, its quite tricky trying to get used to a ‘new normal’ or even trying to work out what is my new normal.  I am not the same person anymore and my life will never be the same again.  What seemed to matter Before Cancer (BC) no longer does and my tolerance of c**p is now extremely low.  To help me with this and to find a way forward, I’ve started having counselling sessions at St. Teresa’s Hospice as well as joining the 6 week Macmillan HOPE course at James Cook Hospital, both of which I’m hoping will be helpful.

I’ve ended all my Complimentary Therapy sessions now as I associate those with the life saving phase of my treatment and I’m now concentrating on the preventative phase.  It was fun while it lasted and as the name suggests, very therapeutic.  My final session was a lovely Indian Head Massage from Caroline at the hospital.

Dr Kagzi , my Radiotherapy Consultant, signed me back over to Dr. M at the beginning of April.  He was very happy with my treatment and so far I’ve had no nasty side effects.  I told him I was feeling a 100% until I lay on the bed and he prodded around my abdomen (I don’t do this to myself so wasn’t aware).  It was extremely sore and tender, don’t forget, he said, its been hit with beams of radiation and so will be very inflamed inside and will take a while, probably months to subside.  I’ve also had a flying visit to the hospital to see Anna for another bout of shingles.

There is the potential for one of the chemo chemicals I received to cause heart issues in later life so its essential I keep my cardio vascular system in tip top shape.  To that end, I joined a running group – Sisters R Doing It – mid way through Radiotherapy with the aim of being able to run 5k regularly.  Of course I used to run, but with my 2 bionic knees and 8 months of inactivity I really am starting from scratch again.

I’ve signed up for this year’s Race for Life in Darlington to raise some funds for Cancer Research to help give people like me a chance to live.  I’d be very grateful for any donations large or small to my giving page – link below – and thank you to those who have already donated:

Click Tina’s Giving Page for Cancer Research

And of course my wig – what a waste of time and money, I’ve never worn it.  A few ladies have tried it on for a laugh while drinking prosecco, but that’s about it.  Anyone want to buy a wig?

 

 

Wed 28/02/18 – Ringing the Bell – 7 mths 8 days

NHS staff  31, cumulative 351

The only country that’s been added to my blog map this time is Romania.

For those of you who have had to visit James Cook Hospital, you will be familiar with the well known trauma of trying to find a car parking spot in one of its multiple car parks.  Now, read this and weep: Although I have had to get up at the crack of dawn every day for 3 weeks to get to my early morning Radiotherapy treatment, this is one of the benefits.  Which space do I fancy today?

I was asked for a photo of me in my ‘special gown’, so pleased to oblige, very fetching.

My car is hopeless in snow and ice, and with Pat swanning around the piste in France, I am left with no alternative but to move to my sister-in law’s in Middlesbrough for the final days of my Radiotherapy treatment.  Otherwise I run the risk of not being able to reach the hospital with the ‘Beast from the East’ on its way.  I am able to walk to the hospital from Bernadette’s house.  This proved to be a wise decision.

So on Wednesday I have to trek through a freezing horizontal blizzard to get to hospital and arrive early and strangely feeling victorious over ‘The Beast’.  The Daily Fail would make a glorious headline out of this: “Cancer patient is forced to walk through blizzards for life saving treatment!”.  Today is my final Radiotherapy zap.  Its probably an urban myth, but I’ve read that in some hospitals, they ring a bell when a person completes the treatment.  No such thing in James Cook so I’m ringing my own virtual bell to signal hooray, its over.  Stage 2 that is, not all of it.  Reception and the Radiographers and Technicians all gave me hearty congratulations – v. nice.  I have an end of treatment chat with a lady and its interesting to note that my skin will now be sun sensitive for the rest of my life.

Unfortunately my car is now snowed in and I have to abandon it in Middlesbrough.  The cavalry arrives in the form of Robert and Isabel, who very kindly come from Darlington in a much more suitable car to rescue a marooned damsel and take me home.  I’m very grateful to be back home.  There is worse weather to come apparently and I wouldn’t have got home probably until next week if they hadn’t collected me.

Apparently, the peak time for any issues with Radiotherapy to rear its ugly head is a week after completion, so fingers crossed that the fact I’ve come through it unscathed will continue.  I am to see Dr Kagzi, my Radio consultant in 6 weeks time for a follow up.  Then after that, its back to Dr Mounter to start stage 3, the Immunotherapy.

I am very happy and relieved to be having the next 6 weeks free of medical treatment or appointments of any kind, apart from complimentary therapies, its been a long hard road.  On the other hand though, its a bit of an anti-climax.  For 7 months, I’ve had the structure of hospital visits, treatments, consultants, etc, and my whole life has been focused around that.  Now, nothing.  No longer will I have the security blanket of Chemo and Radio and endless medical people checking me over. I’m likening the feeling to the umbilical cord being cut, I’m being cut adrift for the short term future.  Its very disorientating and even a little bit frightening, but at the same time exciting, because that means that for the time being I am cancer free, and its good to be alive.

The latest update on my hair is that I now have baby down under my arms and 1 hair on my left leg, and a lovely swirl on my head – going down the plughole.

Now that I can say I’m cancer free for the time being, its time to say thank you to Dr Mounter and his team and the James Cook team for saving my life.  Its impossible to put into words the gratitude myself and Pat have to the NHS.  Enormous numbers of people have been involved in saving me and I will never take it for granted or forget it.  A letter will be winging its way to Dr M.  The NHS is a glorious British institution that we must cherish and fight for.

Of course the advances in cancer research and modern medicine have also been a driving force in my recovery.  I was astonished to learn that PET scans have only been routinely used in the last few years.  CT Scans can show a mass or tumour, but crucially, they can’t show how much or where metabolic (cancerous) activity is, whereas on a PET Scan, the cancer lights up like a Christmas Tree (remember the bright white robbers?).  This significantly improves how doctors can give each patient tailored Chemotherapy and Radiotherapy that is targeted to within an inch of its life and they are also accurately able to tell if the cancer has gone or not. Prior to PET Scans they were playing a bit of a guessing game.  The human body though, is an absolute marvel and wonderfully resilient when it wants to be.

That’s all for now folks.  It will probably be a while before you hear from me again until I start the next stage of treatment.  Be assured that tonight there will be some bubbles consumed in celebration.

I leave you with a poem by Amina Bhatti

Cancer.
You touch the bodies of the living
And mark them for dead
A plague of their own flesh
Rampant, raging, you spread.
Cruel monster, slithering
Through vessels, unknown
Multiplying, dividing
You plunder, you grow
You ravage and destroy
Rot the body like wood
No care for the innocent
No mercy for the good.
Blood, swelling, horror
When at last you are found
we fight for the victim
to which you are bound
we poison you, poison
hack, gouge you out
burn you, hot waves
just kill you somehow
internal struggles, a war
that won’t make the news
sometimes we win
and sometimes
we lose.

Sun 18/02/18 – Bertie’s Corpse & a Bad Haircut – 6 mths 29 days

NHS Staff 20, cumulative 320

Bertie’s corpse is about the size of half a tennis ball and the Radiotherapy will hopefully kill off any persistent abnormal cells that evaded chemotherapy, though of course the medical team and me hope that there were none to begin with.

The whole process from undressing, treatment and re-dressing takes less than 15 minutes.  The actual radiotherapy takes about 1 minute.  There are no real side effects so far after 7 of 15 zaps, apart from occasionally I feel like I have mild sunburn on my abdomen, my stomach gurgles more than it should and sometimes gives off enough heat to fry an egg.  I have a review meeting once a week just to ensure that everything is going smoothly, but I really still feel like a spring chicken.

One of my online Macmillan buddies is having almost parallel treatment to me, same R-Chop chemo and 5 days ahead on the Radiotherapy, having also had a Mesenteric Mass.  We can’t find anyone else similar, so its been good to compare notes.  I think she has suffered a little more than me with Radio side effects, so I can’t help feeling a little guilty at my sailing through it.

I am Nil by Mouth for 2 hours before each session but am under doctors orders to eat breakfast 2 1/2 hours before, because otherwise my stomach will be full of gas and that can disrupt treatment.  Now, setting my alarm at 5:20am in order to eat toast at 5:30am for an 8:00am Radiation hit is not my idea of a good time.  But as my life depends on it, I dutifully obey.  I think if they told me to fly a kite, I would.

I wanted to take a couple of photos of the body mould and machine, but hospital protocol is no photos, so you’ll have to be content with a couple of stock photos.  My body mould is more encasing than the one shown here, but you get the picture.

At James Cook hospital, there are huge photos built into the ceiling, taking up 16 panels, giving you something to look at while you are lying there, in my case its usually machine 5 which has the fetching Saltburn Cable Car to gaze at.

There is one Radiographer, who once the Radiotherapy is delivered literally runs back from the control room each time.  At first it alarmed me thinking they had zapped a vital organ by mistake, but he explained that he can save 10 seconds per patient – marginal gains!  That’s dedication.

I’ve learned that the ‘machines’ are called Linear Accelerators and James Cook has 6 operational, 3 in the main building and 3 in their new £35m flagship Endeavour Unit.  1 more is coming online soon and another new building will house 1 more.  Each machine treats around 40 patients per day and costs between £1.5m and £2.5m each.

I am usually treated in the main building but for Valentines Day was treated to an outing to the Endeavour Unit.

Another benefit to having Cancer!  When arranging for smart meters to be fitted, I couldn’t fit in with their timetable because of my treatment.  As a consequence I have now been added to the national energy priority list.  In case of power cuts. I will be among those who get reconnected first.  I am a little sceptical as to how this would work in practice and am fearful that the whole village will want to come to my house in the event of power cuts.

My hair is coming on in leaps and bounds.  I have visible growth now, eyebrows, mini lashes and one under my right arm.

Ciao for now. x

Thu 08/02/18 – Radiotherapy starts – 6 mths 19 days

NHS staff  15, cumulative 300

It seems like an age since I last posted, no news is good news.  Notice the cumulative NHS staff is now 300 – phenomenal.

Friday 26 Jan

Today, I go to James Cook hospital for Radiotherapy planning.  I arrive in the department and what looks like a 12 year old child calls me into a room and its only when she says we are going to have a chat do I realise she is in fact a trained medical professional.  We just go through what is going to happen today.

A nurse then calls me in to insert a cannula so I can be given a tracer.  The only issue is my veins having taken a battering over the last few months are not playing along, they are either collapsing or disappearing and she is struggling to find a suitable one.  To avoid using me as a pin cushion, she takes me to an expert in the phlebotomy (blood) room in the chemo unit.  What a great word that is – phlebotomy.  A big bear of a man (The Vein Hunter) there also struggles, but eventually has success and yet another nurse is called to flush it through.

Then I have to change into one of their ‘special’ gowns.  They are so called because of all the Velcro openings in it, allowing the nurses to expose the relevant part of the patient depending on where Radio is required, and are made for the department by volunteer seamstresses.  They might also be called special because they barely cover your knickers.  They are a one size fits all and it appears that I am wearing a mini skirt version of a tent.  I am to take it home and bring it to every session.

So onto the CT scanner bed, where the nurse manages to knock the cap off my cannula resulting in blood all over my trousers and the scanner.  A quick clean up ensues then we are ready to go and reinforcements arrive in the form of 3 more nurses/technicians.

I lie down on a giant bean bag reaching from my knees and including my arms above my head and the 4 of them wrap the bag tightly up my sides leaving the front open and a machine sucks the air out of it, resulting in a solid mould of me.  It feels like being in a coffin, not that I’ve ever been there.  They make sure I am able to extricate myself from it by hauling on a rope pulley, then its back down to start the scan.  The mould will be used every day of my 15 lots of treatment to make sure I lie in exactly the same position.

First they make 3 pen crosses on the top of my abdomen and one in the pelvic area and lay ball bearings on these crosses, they leave the room and the scanner starts. The ball bearings apparently show up white on the scanner and aids the radiographer in planning exactly where he is going to strike.

It only takes a minute or so, then they remove the ball bearings and replace them with permanent tattoo dots (just a sharp scratch dear!) and then I’m outta there.

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In the last 6 months, I’ve had to learn to do nothing and while away the hours and days.  Now that I’ve finished chemo and have perked up, its pretty difficult to get out of the habit of doing sweet folie douche, but try I must although the coming Radiotherapy may make me pretty tired again.  I’ve started running again and Pilates and have been doing plenty of walking so its not a bad start.

We did have 3 days in the Lakes with a bunch of friends which was wonderful and my first real break since July 2017.

I have to pop to the hospital to get more prescribed anti blood clot tablets from Dr. M – only another 4 months to go and then I might be drug free.

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Thursday 8 Feb

Trinity Holistic Centre at James Cook called me last night (while I was in the pub) to arrange a telephone assessment, Nicky my nurse has referred me there for more complimentary therapy during my Radiotherapy.  We do the assessment next morning just before my Radiotherapy is due to begin.  It is short lived though, because once she finds out I’ve had a blood clot in the last 6 months, they won’t touch me with a barge pole until April. A different protocol to Darlington that I find infuriating.

A Radiographer assistant calls me for a chat, gives me some anti-sickness tablets (more drugs), more emergency numbers in case of problems and a list of my next 14 appointments and several review meetings. I get changed into my gown and go through to a fascinating futuristic looking Radiotherapy room.  The room is cold for the machine’s benefit which means freezing medical hands – brrrr!  It takes them a while to locate my body mould and I chat to the Radiographer while we wait.  Any questions, she asks.  As it happens I’m quite concerned that the radiation will damage my bowel and one kidney.  She says its highly unlikely because the machines at James Cook can deliver laser beams that can curve a bit around organs and parts of you they don’t want to touch – wow. This has only been used in the last few years and is available at relatively few hospitals, so I’m counting my lucky stars.  Patients in most other hospitals have to make do with straight laser beams presumably.

We start.  I am manoeuvred, prodded and poked into the mould until the machine is precisely aligned with my tattoos.  The team have calculated the exact angles and intersections of the laser beams.  The machine is huge and has giant arms feeding off a central core.  One of the arms is to take a scan immediately preceding the beams just to double check, then the radiation takes about a minute.  It is all quite painless and then I’m outta there without having to use the rope pulley to haul myself up – Pilates is working.  One down, 14 to go, and as the sessions will all be the same, I won’t bother telling you about them save for the review meetings.

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I’m constantly surprised by the countries my blog gets viewed from.  New one’s since my last post are Hong Kong, India, Myanmar and Paraguay.  Some of you have asked for an updated list – here it is:

Albania, Antarctica, Australia, Bahamas, Belgium, Brazil, Canada, Croatia, Denmark, France, Gambia, Germany, Ghana, Guernsey, Hong Kong, Hungary, India, Ireland, Isle of Man, Italy, Japan, Madagascar, Malaysia, Malta, Mexico, Myanmar, Netherlands, Paraguay, Philippines, Poland, Portugal, Spain, Tanzania, Turkey, United Kingdom, United States, Vietnam.

That’s all for now folks.

Thu 18/01/18 – Part 2 begins – 5 mths 29 days

NHS Staff 5, cumulative 285

After last week’s great news, I am still on cloud nine and to quote Irene Cara – What a feeling!  Its as if the last 6 months has all been a really bad dream.  I am still living in Cancerland however, so the show goes on.

I gave some advice online to someone who was really worried about losing their hair and what other people would think.  Hair or Life – its a no brainer, hair grows back and its the 21st century, no-one should be ashamed of being ill.  I’ve been quite taken with wearing hats and being able to have a shower and be ready to go out moments later without all the faff of hairdryers etc.

There are perceptible signs of my hair springing into life, like grass in a desert.  I now have a couple more eyebrow hairs and my head is no longer as smooth as it was.

The nerves in my fingertips are also starting to regenerate, much sooner than I expected which is good news and nice to get back some feeling.

I’ve had 3 lots of complimentary therapies this last week and I can keep going for them apparently to both the hospital and St. Teresa’s as long as I’m still receiving treatment,  although I will make way for others more in need if necessary.

Well a surprise at Uke club this week, Andy and Marcia have written the Ballad of Bertie for me set to the tune of Bad Moon Rising.  If my friends are unlucky enough, I might perform it in a couple of weeks at our camping trip in the Lakes.  Earplugs at the ready.

I’m halfway through the book I’m reviewing and there is one key fact that has stuck with me: Follicular Non Hodgkin Lymphoma at stage I and II is classed as low grade or indolent and incurable.  Stage IV is classed as high grade and aggressive and maybe curable.  Mine was classed as low grade stage III but behaving aggressively and therefore sits on the fence. – Food for thought.

I met with Dr Kagzi, who is in charge of my impending Radiotherapy at James Cook, for the purpose of allowing me to give informed consent to the treatment.  He explained the possible side effects – scarred kidneys and bowel with impaired function, secondary cancers – bowel cancer and Sarcoma.  These are very rare occurrences, but he is obliged to tell me as I can decline treatment.  Although it sounds scary, I’m sticking to what Dr M and the MDT team have recommended for me, so signed my life away.  I am going to the unit next Friday for a scan and to have my tattoos done so the team can precisely plan the area to be treated.  The tattoos are to ensure that I am aligned correctly under the machine each day.  The actual treatment will probably start about 3 weeks from now.

So now I have a few weeks respite from treatment, bar the scan next week and can try and settle in to my new normal.  I’ve been trying to get a bit fitter, having walked nearly 50 miles this last week to give me the best possible outcome under the treatment, strengthening my heart muscles, and next week I have signed up to start running again.

Wed 10/01/18 – Gift of Life – 5 mths 21 days

NHS staff  9, cumulative 280

Additional countries viewing my blog since my last post are Italy, Japan, Philippines, Poland and Tanzania – my map is slowly filling up.

Thu 4/1/18

Today I had my end of chemotherapy PET Scan at James Cook hospital.  Exactly the same process as before, save we had a false start because I lit up the screen like a Christmas Tree because of metal buttons on my base layer top.  When they inject the radioactive tracer pre scan, you have to lie still for an hour for it to work its way round the body.  I thought I would read during this hour, but got told off by the nurse (too much arm movement!).

This is a crucial step as it will show how well the chemo has worked.  I’ll probably get the results next week, It depends on when Dr M is free as he’s said we can talk through the results while looking at this and previous scans.  Nicky, one of my nurses is sorting this out.

Fri 5/1/18

After the Festive break, I resume my Friday therapy at St. Teresa’s, its good to be back.  After my normal massage, Debbie suggests also a hand massage to help with the neuropathy in my fingers.  Its bliss and I feel like a child being attended to.  As we are chatting she suggests that she refers me and Pat to their counselling service as we are struggling psychologically with what will happen next and I agree.  I didn’t book an acupuncture session this time because I was a little scared after the last time, but Debbie persuades me to go back as its also recommended for neuropathy.

Another day, another scan……. this time an Ultrasound scan at Bishop Auckland Hospital.  Its for the lump on my rib.  The technician (nurse?) confirmed what the x-ray had showed, it is nothing but a fatty lump just under the fat layer, prominent because it is on top of a bone – its the tenth one she’s seen today, so common as muck.  I’ll discuss it with the GP in a week or so when he gets the results, but I’m happy now to forget about it.

Tue 9/1/18

A lady from St. Teresa’s Hospice calls me to tell me the counselling referral is in progress and also to inform me of other clinics and support groups that may be of interest to myself and Pat.  She also tells me that if I am not allowed to drive to my daily Radiotherapy sessions at James Cook hospital they can allocate a volunteer driver to take me there and bring me home.  What a fantastic service they provide to patients,  with no fanfare.  I will definitely be supporting them as much as I can in the future.

Anna my clinical nurse calls me in the afternoon to say D-Day with Dr Mounter is tomorrow at 3:00 pm.  We are immediately filled with anxiety.  Has the chemo worked and Bertie has been fully blitzed or will there be some left?  What if it hasn’t all gone?  the questions are endless and a sleepless night is surely on the cards.

Through the Lymphomas.org.uk website, I’ve been assigned a Lymphoma buddy called Clare who has had the same type of cancer as me and who I can phone and email with questions or just talk to, which I plan to do this week after I’ve had my results.

I’ve also got some Macmillan on-line buddies, people who have the same or similar cancer and its been to good to talk and freely rant (as do they) with people who have had the same experiences.

Nicky my clinical nurse is also referring us for counselling (NHS) so it will be a counselling pincer movement together with that of St. Teresa’s – our heads should be well and truly sorted out.

I’ve volunteered to review a book for Macmillan – Living with Non-Hodgkin Lymphoma – as I’m now qualified to do that.  Macmillan get all the books they either stock or recommend reviewed first to make sure that they are suitable.  The weighty tome duly arrived, gosh its thick and full of medical terminology and is going to demand my attention methinks.  If I like doing it, I will continue with other books.

I can look forward to my hair starting to regrow in about a month I think.  It will be good to have some to accompany the two remaining hairs on my whole body (on my right eyebrow in case you are wondering).  The other side of the coin is that I’ve saved a fortune in shampoo and hairdresser bills.

Wed 10/1/18

After a lovely soothing hypnotherapy session with Fiona its time for the big meeting.

Dr Mounter greets us at the hospital and asks us if we’ve had time to digest the results from Anna.  I hadn’t asked her for the results when she called yesterday because I wanted Dr. M to be there to answer questions and didn’t want to be left hanging overnight.

We are ushered into an office with monitors set up to use to view my scans.  We first see the scan taken at the end of July.  Its a bit like looking at escaping robbers trying to hide in the bushes when a police helicopter is following them, the bad bits show up bright white, so really easy to see.

We can see a couple of white spots in my lower neck and one in my abdomen and strewth what looks like a baby the size of a rugby ball in my abdomen – Bertie in all his glory.  We had been told the dimensions of the tumour but to actually see it takes our breath away.

Then onto the scan from last week – nothing, that’s right, nada, zero, zilch, nothing at all!  Dr M is delighted to be able to tell me I am in complete remission, there is no sign of any activity (cancerous).  We have a few tears of joy and the overwhelming feeling of relief is hard to describe.  There is 6cm (was 15.5cm) of growth remaining in my abdomen. It is dead cells, scar tissue that will eventually disperse over time and I may find it difficult to have a 6-pack stomach ever again but I think I can live with that.

I had specifically requested to see my PET scans after someone mentioned it on the Macmillan online forum, it is not a routine thing.  It is only when you see in the flesh, so to speak what you have been dealing with that you truly understand.  I highly recommend all patients having a PET scan ask to actaully see the results.

Because the tumour was so big, they are are cautious and I still have to have Radiotherapy and the 2 years of immunotherapy, to make absolutely sure its gone.

Onto the prognosis: this type of cancer is unfortunately incurable but highly treatable and manageable.  There is a likelihood that I will relapse in the future, but it could be 2 years, 30 years or never, and this is what we need counselling for to learn to live with this hanging over us.  But with the research and treatment of this type of cancer rapidly improving all the time, there is a good chance that I will die with it but not of it and I think that’s what we should all hold onto.

For now I’m off to get drunk celebrating the most fantastic news I could ever receive and which was more than I could ever have hoped for.  God bless the NHS, they have given me the gift of life.

 

Sun 31/12/17 – Bertie’s Christmas Gift – 5 mths 11 days

NHS Staff 7, cumulative 271

Another day, another turkey sandwich…. I hope you all had a wonderful Christmas.

Final post for 2017 – I’ve got too much to say to wait until next week.

Although Dr M had warned me that the cumulative effects of my chemo would get worse, cycles 4 and 5 had been relatively ok, so I thought my final cycle would be a breeze.  I had got a little cocky and went so far as to unpack my hospital ‘go’ bag. How wrong I was.

As promised, 7 days after chemo, on the Wednesday before Christmas I was struck down with the most severe abdominal pain and the shakes. Too excruciating to eat or sleep and it made me cry.  I could do nothing except lie in bed in a feotal position.  I called the hospital for advice – eat more fibre! I was flummoxed.  If it was still the same the next day I would have to go in.  Pat had to come home from work I was in such a bad way.

Having managed to get through the night, I was still the same on Thursday, spending the day in bed in the same feotal position, with my temperature alarmingly going up and down like a yo-yo.  By the evening I had worsened and recalled Pat from a friend’s soiree (yep, I missed it) and he called the hospital.  For the first time, the staff nurse said that I would have to go A&E as they were understaffed that night but she knew there would be a long wait there.  I actually felt too ill to spend a few hours in A&E, so the nurse ran through what painkillers we had in the house.  I was allowed to take the 1 codeine tablet we had which took the edge off just enough to sleep.  My cracked thumbs took it upon themselves to spontaneously bleed profusely to add to my misery, but at least I had stayed out of hospital.

Friday I needed more painkillers and took the risk of turning up at the GP surgery to see if I could see a doctor, rather than having to traipse to the hospital.  Reception looked at me as if I was mad, sometime next week I was told.  However having cancer does open doors and once they knew that I was straight in.  I was given what seemed like half the pharmacy to help me and it did.  By Saturday, the pain had gone and I had lost 8lbs in those 3 days taking 1 day to put it all on again.  To replace the pain, I gained a couple of ulcers on my tongue, happy days.

I felt a little guilty that my ward was understaffed. I know the NHS is stretched and I’ve had more than my fair share of resources since July probably costing tens of thousand of pounds.  I haven’t brought this on myself however, so only felt the guilt fleetingly.

I perked up just in time for Christmas Day, spent with the family at my house.  A lovely day.

The icing on the cancer cake was to wake up Boxing Day with cracked and bleeding feet again, soon resolved with lashings of cream.

Anna, my clinical Nurse called me Friday just gone, just to check how I was doing, which was sweet of her, although she is probably just doing her job.

As I write today, I am feeling like a Spring Chicken again, ulcers and feet have cleared up, no pain, the worst is over at long last.  This final chemo cycle has been awful and what I expected it to feel like every cycle, so I count myself luck that it didn’t.

I’m now in limbo until after my scan next week, neither sick nor well, neither cured or not cured, its like living in a different universe to everyone else.

Having lurked for months on the Macmillan on-line community where everyone is special, I  finally decide to join up and am heartened by the support received.  I use their new Digital Nurse facility where you can ask questions to a medical expert.  What an excellent service this is.  I receive a pretty comprehensive reply to my enquiry.  I am now quite experienced in all things cancer related and find myself offering advice to someone suffering from side effects – who’d have thought it!

Since I posted my blog map of the world, I’ve had views from Antarctica, which I’ve already mentioned, plus Bahamas, Gambia, Mexico, Madagascar and Portugal to add to my list – how global.  Still a long way to go though to fill up the map.

I guess you’re all gearing up for the final shindig of the year tonight along with making those customary resolutions.  This year has given me a new perspective on life and I’ll no longer be making resolutions, who really cares if you drink and eat less or exercise more?  What’s important is to live life and make each day the best it can be, love your friends and family and be kind to everyone – you never know what they are going through.

So have a great time tonight and stay safe. See you in 2018. xx

Tue 19/12/17 – End of Part 1 – 4 mths 29 days

NHS Staff  9, cumulative 264

I thought I’d better update you on events as I’ve received a few enquiring emails.

Tue 12/12/17

I have blood tests and a review meeting with Dr Mounter today.  My blood counts have recovered slightly to be just above the required thresholds, thank goodness, so its all systems go for Thursday.

I tell Dr M about my new symptom – peripheral neurothapy, numbness of fingers and toes.  This is a known side effect of one of the chemo chemicals Vincristine.  He is going to switch it Thursday to Vinblastine, which is still effective but less damaging to sensory nerves.  Hopefully this means the nerve damage is not permanent and will reverse, although it may take up to year to do so – a small price to pay.  An interesting fact is that both chemicals are derived from the Periwinkle (latin – Vinca).

Pat comes with me for this final chemo review meeting.  I had been trying on my new sparkly dress in the morning not realising that it sheds glitter.  While sat in the waiting room, I take my hat off and have glitter all over my head.  Pat remarks that I look like a disco ball – cheeky monkey!

14/12/17

Today is the final chemo session which goes off without a hitch.

I should feel elated about this but it is a terrible anticlimax, as I know that this is still not treatment finished for me.  Also I need to have the final PET scan so we can see the extent of the success or not of the chemo.  This is scheduled for the 4 January 2018 and it will take a few days to get the results.  Dr M will schedule an appointment to review the results and also for me to see side by side all the scans I’ve had, so I can see for myself what the progress is.  Hopefully total extermination!

15/12/17

I take a bit of a risk today by going to Edinburgh for a couple of days with Pat’s sisters to visit the Christmas Markets and celebrate Catherine’s significant birthday.  I’m supposed to avoid crowded places so I don’t get an infection.  We have a great time however and I think I’m unscathed although absolutely exhausted and sleep for 12 hours when I return.

18/12/17

Today a lovely Reflexology session with Caroline at the hospital.

There are many positives to finally finishing the chemotherapy.  From Boxing Day onward, the steroids will be out of my system and I can look forward to sleeping properly again after 5 months.  I will probably have a couple of more ice-cream days then I have to start eating normally (reduced) after New Year as I won’t be able to blame the steroids.

No more taking 22 pills everyday, no more nausea, abdominal pain, arms covered in bruises, ulcers and sore thumbs and within 6 months I should recover my energy.  In January I’m allowed to start running (gently) and swimming again – that will be a shock to the system.

So for now, I can relax and look forward to Christmas and New Year with family and friends and it will all start again in January with appointments and Radiotherapy.  No Christmas cards from us as usual this year – we will be making a donation to Cancer Research instead.

For my blog map of countries viewed from, I must tell you that I have bagged Antarctica – how exciting is that?  Catrin, one of Pat’s friends is with the British Antarctic Survey on one of the islands.  Pat says she’s counting Penguins, but I’m sure its much more than that.

Well I think that’s going to be my final post for 2017 unless anything untoward happens. Before I go, I would like to really thank all my family and friends for all the visits, gardening, lifts, food parcels, flowers, presents, emails, messages etc.  Your unwavering support so far has meant the world to Pat & I and has made what has been a really tough 5 months emotionally and physically easier to endure.

So I’ll sign off by wishing you all a lovely Christmas and New Year.  Above all I wish you health and happiness because they are both priceless.

See you in 2018 folks.

 

Mon 11/12/17 – Acupuncture Angst – 4 mths 21 days

NHS Staff 2 , cumulative 254

Fri 8/11/17

A whole week without any medical appointments this week, how nice!

As usual, I have my double dose of therapies this morning.  In acupuncture, he has been concentrating on boosting my immune system as my blood counts need all the help they can get.  This time however, he is going to address the numbness in my fingers and toes.  Normally, I roll my trousers up and he sticks more than a dozen needles in my feet, lower legs and head and I don’t flinch at all.  Today, he puts one in my foot and the pain is excruciating.  I yelp very loudly and tell him to take it out.  He tries again but my feet take on a life of their own, involuntarily evading his valiant attempt.  Are you ok to carry on, he asks.  Yes of course I say.  He makes a couple more attempts but its like trying to catch a slippery eel, my feet are just not having it.  Its only when I very nearly kick him in the chin that we agree to give it a miss for today.  I settle down for a welcome massage.

Sun 10/11/17

I took a bit of a risk today by going to the local church for the annual Christingle and Carol service.  I’m supposed to avoid crowded places to avoid picking up infections.  I have to live however and didn’t want to miss this charming little service, full of friends and neighbours.  As I write, I’m pretty certain I picked up nothing.

Mon 11/11/17

Remember the lump on my ribs?  I wasn’t completely satisfied with the lack of explanation as to what it was, so go back to see Dr Kent for further discussions.  He says that he will arrange for me to have an ultrasound scan as the recent x-ray had shown it was not bone related.  I’m happy with this turn  of events.  Although I’ve been told its nothing to be concerned about, it is something, and I’d like to know what it is.  At the same time, I return my unused and used Heparin syringes back to the surgery – good riddance!

Then followed a spot of Christmas shopping and I bought myself a little sparkly dress for Christmas because I’m worth it.  By the way, my skin is becoming softer and softer with all the water I’m drinking, I may well actually resemble a baby soon.

You may recall in an early post that I mentioned I couldn’t see who was viewing my blog but I could see from which countries I was getting views.  Now, I don’t have much to amuse me currently, but what does amuse me is my little wordpress map of the world getting slowly coloured in with views.

I wonder if I could ask your help?  If you know anyone in a country that is not already represented, would you mind asking them to view my blog? I’d really like to get close to a full house, and as you can see, there is a way to go.

This is what the map looks like at the moment:

The countries that I’ve had views from to date are:

Albania, Australia, Belgium, Brazil, Canada, Croatia, Denmark, France, Germany, Ghana, Guernsey, Hungary, Ireland, Isle of Man, Malaysia, Malta, Netherlands, Spain, Turkey, United Kingdom, United States, Vietnam.

Any help would be appreciated.  Thanks xx

I bet none of you has noticed – I’ve made it to a Monday without any medical shenanigans – what a relief.  Dr M had warned me that the cumulative effects of the chemo would get worse and worse, but the reality is they seem to be getting better.  This cycle, I felt a bit tired a couple of days, had 1 mouth ulcer and some finger numbness and the normal lethargy, so not so bad.  Fingers crossed it keeps up for the last cycle starting this week.

Mon 04/12/17 – X-Ray results – 4 mths 14 days

NHS staff 3, cumulative 252

Tue 28/11/17

As I’m waiting for my x-ray in the hospital, I read the paperwork I’m given.  Dr Kent has written ‘Met or node’ on the x-ray request form.  Oh dear god, that means either metastasis i.e. the cancer has spread or another lymph node is active.  I feel like I’m going to be sick.  I have the X-ray, a 1 minute process.  The X-ray guy said he would send the report to my GP in 7-10 days.  Whoaa cowboy, the request says urgent I tell him.  Ok, 3 – 5 (working) days then he says.  Even that’s too long for me, but I have no option but to wait.  I email Anna to give her an update and ask her to look out for the results.

Mon 4/12/17

Well, its been a tortuous nerve racking wait, how I would wait the original 10 days the x-ray guy said without going demented is anyone’s guess.  We’ve spent the last few days and over the weekend focused on nothing else.  After the great CT scan results we could finally allow ourselves a little bit of hope that my treatment would be ultimately successful and I would survive, but now we feel like that has been snatched away from us.  Logic says though that I am in the middle of aggressive chemo treatment, so how could something else pop up?

We have a lovely visit from 3 year old Florence, and her parents Drs Phil and Liz.  How can Pat and I be so old that we are now a great uncle and great aunt?  With that mantle, we should be in rocking chairs on the porch.  Phil and Liz once again a mine of useful information and support and another pair of eyes on my lump.

Shortly after they left, Anna, my nurse called with the x-ray results, that’s not half bad – 4 days.  I have no additional Lymphoma and no rib abnormality and no other abnormalities – apart from the bleedin’ obvious.  It is inconclusive as to what the protrusion is, maybe some internal bruising or scar tissue, but the important thing is nothing further to be concerned about.  Oh, praise the lord or something, what a great weight off my mind.  Pat actually has a couple of tears of relief, its been that heavy a burden.

We can pick up again where we left off with the positive CT scan results and think that I’m on the road to recovery.  Although I only have one session of chemo left to go on the 14th December – and I am praying that my blood counts will hold up in time – I still have 3 weeks of Radiotherapy to have plus 2 year’s of immunotherapy.  So by my calculation I’ll be finished in about March 2020.  How great to be planning for 2020!

I’ve actually started scouring the Macmillan website and other Lymphoma websites as to what happens next. i.e. remission and potential relapse.  A couple of months ago it wouldn’t have been possible to dare to think that I might reach that position.  I have also signed up to have a ‘cancer buddy’ through Lymphoma.org.uk – how cool is that?  There are always so many questions, so it would be good to have someone on the phone who has been through exactly the same experience.

Brrrrr, hasn’t it been a bit of a cold snap?  With the chemo, I’ve really been feeling it and have struggled to keep warm.  Pat sits there still in a t-shirt and I have multiple layers on, blankets, hats, balaclava and buff resembling something between a teenage snowboarder and a burglar – its not a fetching look.  Today its warmed up a bit thank goodness.

Yesterday, I couldn’t face proper food (complete distaste of meat or anything salty – and wine while we’re at it) so it was an ice cream day.  I have learned the hard way that supermarket soft scoop ice cream is absolutely no match for Carte D’Or Madagascan Vanilla.  I felt compelled to finish the soft scoop to make way for something superior.

It wouldn’t be a new normal Monday without something medically new popping up and this Monday is no different.  On Saturday I started having numbness of my fingertips and big toes.  It is a known side effect of chemo and the beginnings of peripheral neuropathy.  My symptoms are mild however and having emailed Anna about it today, we’ll just keep an eye on it.

Something now completely unrelated – I watched a recording of the Blue Planet and was completely blown away by seeing an army of sea urchins munching on kelp – extraordinary!

Mon 27/11/17 – Bertie’s Birthday Bonus – 4 mths 7 days

NHS Staff 3, cumulative 249 ( I don’t include St. Teresa’s Hospice staff in the count)

I thought I would have nothing to say this week, but Medical Action Mondays strike again and I’m so flippin’ tired of it.

Friday 24 Nov

I enjoy my double dose of acupuncture and massage at St. Teresa’s Hospice. At the end of the massage, Debbie the therapist asks if I mind if she prodded about down my side, she wants to check something. She is not happy with a hard protrusion by my ribs that wasn’t there last week and calls a nurse in to take a look.  I have a feel, it feels like a rib sticking out. The nurse has a feel and said it was inconclusive but is a bit abnormal and I need to get it checked out.

I log on immediately to my GP surgery and manage to get an appointment for Monday 27th, my birthday.

Sunday 26 Nov

A birthday Sunday Lunch with the family.

Monday 27 Nov

Firstly, I wake up with shingles, the second time this month – deep joy.

I  send an email to Anna,  my Clinical Nurse Specialist telling her about my ribs as I’m supposed to inform her of anything relevant. She calls me almost immediately asking me to pop to the hospital so she could have a look. I always remember Dr. M telling me that they will decide what’s important to have a look at rather than me making that decision.

At the hospital, Anna investigates and again it’s inconclusive and I still need to see my GP.  This is followed immediately by a lovely Indian Head massage in the ward.

Then on to see Dr. Mark Kent, which by now I’m thinking is a waste of time. He decides that there is ‘something’ on or around my 10th rib (I imagine some of you are counting your ribs right now), but says it’s unhelpful to speculate what. It could be a growth or nothing. He is sending me for an urgent chest X-ray either now, or as I’ve already been to the hospital once today, first thing in the morning, we decide on tomorrow.  He wants Anna to call him to discuss the results,  though I’m not sure what the timescale is. I honestly believe it will turn out to be nothing.

Once again, the almost immediate medical attention and care I receive from the NHS is just so impressive. I feel very looked after.

This is all a little unnerving. Why can’t I just have bog standard cancer and side effects without an added trauma practically every week? Suffice to say that this while still reeling from the loss of Astrid contributes to probably the crappiest birthday I’ve ever had, despite receiving lots of lovely birthday wishes,  cards, flowers,  chocolates,  visitors etc, it all felt hollow. Pat and I eventually decide to go out for a birthday curry, mainly because I can’t be bothered to cook rather than to celebrate.

A bright spot though in the form of a donation received today to pass on to St. Teresa’s Hospice, who do great work,  thanks dad.

 

 

 

 

Thu 23/11/17 – Sad, sad news – 4 mths 3 days

NHS Staff 5, cumulative 246

After a really good weekend followed by a lovely few days visit from Andie and Mike, I came crashing back to earth today.

Today is not about me, so just a quick summary.

I had my pre chemo blood tests and review meeting with Dr M and Anna on Tuesday and Chemo without a hitch today, save it took 4 goes to get a cannula in as my veins seem to be on strike.  The first 3 attempts resulting in lumps as big as walnuts (they’ve gone now) – because of the blood thinners, I think.  Again my blood counts were on the lowest limit, but Dr. M had said to proceed, so they did.

While having my chemo, I received the terribly upsetting  news that my Aunt Astrid in Denmark had finally lost her battle with cancer early this morning.  she died peacefully in a hospice surrounded by her family.

I just hope my uncle Nuller and my cousins can grasp a small piece of comfort knowing that her suffering has finally come to an end.  I had plenty of time today to reflect on good memories of her today, which is what I will hold on to.

Cancer is so cruel, so indiscriminate, inflicts so much suffering and takes good people too young.  It is just devastating for the family.

Rest in peace Astrid – you were loved.

Fri 17/11/17 – Shy bairns get nowt – 3 mths 28 days

NHS staff 6, cumulative 236

A lovely relaxing massage at the hospital on Monday.  I’m astounded to learn that I’m only one of six patients to take up the complimentary therapy offered at the hospital, the others are really missing out.  On my way out, one of the ladies on the charity stall in the main corridor said ‘morning pet’, that must mean I’m one of the locals now.

Who would have thought that fresh pineapple scattered with fresh mint would be a remedy for the metallic taste in my mouth with the added bonus of being delicious?  A revelation, Thanks Clare J!

After a pretty miserable week physically last week, I’m now on the third week of cycle 4 which means I’m feeling like a spring chicken now.  My feet have cleared up, though I’m still dealing with cramps in my calves and the injections.

I sent a begging email to Anna my nurse on Monday, telling her that because of my traumatic biopsy, I seem to have developed a phobia of needles in my stomach,  and what were the chances of switching the injections to something in tablet form.  I’m finding it very difficult to administer the injections, it sends me into a panic.  It just seems unfair to cope with this on top of the chemotherapy.  I mean would you fancy this in your stomach?

She was on holiday so didn’t pick up my email until Wednesday.  I fully expected her to tell me to stop whingeing and to pull myself together, but no, she spoke to Dr M and I am to go the hospital Friday to discuss the situation – she is a complete angel, and again I’m grateful for the speed in which they are going to see me.

So on Friday, I turn up at the hospital, getting my good morning to the charity lady in before she does.  I meet with Dr M and Anna and they enquire after my feet.  Its completely cleared up and Dr M says it might be hand foot syndrome which is a side effect of some chemotherapy but is not specifically associated with mine.  He has never seen it before in R-Chop patients and is interested to see if it reoccurs in the next cycle.

He says that the recommended treatment for blood clots in cancer patients is the Heparin injections, which is what he has put me on.  There is a relatively new drug – Rivaroxaban – in tablet form that is already used as an anti-coagulent in normal patients, although not yet the standard for cancer patients, but it was only a matter of time before it was.  In special cancer cases, it can be prescribed.  I qualify as special so can switch with immediate effect as he doesn’t want to inflict suffering on suffering.  Woop woop, I am ecstatic and could kiss him.

I skip down the street back to my car clapping my hands as I go and am grinning from ear to ear because I am just so happy at his decision.  Actually I get some strange looks as I probably look like a special needs case, but who cares!

That news on top of this morning’s regular acupuncture and massage at St. Teresa’s is a great start to the weekend.  Set to get even better as we go away for the weekend in the camper van.  Off to the Miner’s art exhibition at Auckland Castle, followed by dinner in Hexham at a restaurant on our list and a walk on Sunday.

Good weekend to all. x

 

 

Fri 10/11/17 – Cumulative Effects – 3 mths 21 days

NHS staff 7, cumulative 230

Tue 7/11

The District Nurse comes at 6:00 pm and gives me the first Heparin injection.  She heads for my stomach with the needle and once again, I head her off at the pass and direct her to my thigh.  I think I need to try and get over my biopsy induced phobia of needles in the stomach.

Wed 8/11

After a sleepless night, I find that my calves are extremely sore (post cramp type of sore) and continually throbbing and my feet, having been dry for a few weeks are now cracked, bleeding and throbbing.  Its painful to walk, I’m hobbling like Julie Waters as Mrs Overall. That coupled with a headache, slight light-headedness, shooting pains in my groin, sore almost bleeding thumbs and the usual lethargic chemo effects mean that I’m not feeling my best.  The cumulative effect of chemo that Dr M warned me about plus the effects of the blood clot mean that the process is now physically gruelling and I’m quite hacked off with it. Someone up there is really testing me now. On the flip side, I’m immensely grateful for the life saving treatment.

I drag myself to a hypnotherapy session first thing then home to await a visit to the hospital this afternoon.

At the hospital, Anna, a couple of nurses and Dr M inspect my legs and feet.  The Heparin will sort my legs out and lashings of cream for my feet. They will monitor the feet to make sure they don’t get infected. It’s not a normal side effect of R-Chop, so no explanation.  Anna gives me an injection lesson (in the stomach). Other sisters and nurses see me there and enquire after me, one giving me a hug, it’s comforting to not be a stranger there.

Fri 10/11

A double helping of therapy at St. Teresa’s, acupuncture and massage first thing.

My legs and feet have improved enough to go for my regular Friday afternoon 3-4 mile walk with Mark, it’s so therapeutic to get outside in the fresh air (it’s freezing!) and have a bit of exercise.

The self injections are not going well. It’s so unnatural to stick a needle into your own stomach. The needle doesn’t hurt but the Heparin burns for a minute or two.  I’m a big girl’s blouse about it and dread 6:00pm every day now.

I’m not expecting much to happen in the next week apart from a physical improvement,  so you may not hear from me for a week or so.

Have a good weekend peeps.

Mon 6/11/17 – CT Scan Results – 3 mths 16 days

NHS staff 11, cumulative 223

Thu 2/11

Cycle 4 of chemo starts today, that means I am half way through the chemo treatment, doesn’t time fly?  When I turn up at the hospital, Sister Flatman told me that my Neutrophil count from the Tuesday blood tests was too low at 1.3 to start the chemo and I would have to be retested now.  Chemo can only start if the count is 1.5 or above.  Luckily it has risen to 1.7, so I just scrape through.  This means I am neutropenic again, but not severely like the last time I had to be admitted to hospital, so just have to be really careful to eat enough and avoid infection.  My white blood cell count has dropped from 11.9 at the start to 3.1, so I am a little concerned that there is not much further to go before I have no immune system at all.

A bizarre thing happens while the Doxorubicin (the toxic one) is being administered, my lower forearm becomes frightenly ice cold and the nurses have to wrap it up to keep warm then that is followed closely by an epirubicin flare, a sort of allergic red rash reaction.  This is resolved by a half hour dose of 1 litre of saline.  My right arm has taken a battering these last few days, with the Scan injection, blood tests and chemo and is looking a bit sorry for itself.

Fri 3/11

A double dose of feel good therapy today at St. Teresa’s hospice.  Acupuncture to boost my immune system, followed immediately by an aromatherapy massage, a good way to start the day.

I had been told that my scan results would be available yesterday and Dr M would call me with them – I have heard nothing which may be of no consequence to the NHS but to me, means a very anxious wait, I need to know that the treatment is actually working and am not looking forward to having to wait over the weekend for an answer.  So, I try calling Nicky, she is not there until Tuesday, so I call Dr M’s secretary who will get in touch with him.  She called back a couple of hours later to say that the Radiologist had not yet written the report for Dr M to look at and it will be next week before I know. God its agonising and so frustrating!

Mon 6/11

A pattern is emerging, Mondays seem to be the day of medical events and action and today is no different.  I am a walking physical disaster, but as Pat says, I am his physical disaster.

As I write this blog this morning, Anna one of my clinical nurses calls me to say the CT scan results are in and I have to go to the hospital immediately.  I have to go to the Dermatology Clinic first though for a scheduled appointment which I don’t want to lose.

At the Clinic, the doctor says the black lump on my lip is a venous lake – very exotic, but purely cosmetic, as is the thing on the crown on my head. she takes some photos of the moles on my back for comparison in 4 months time.  None of it is anything to worry about, but it was better to be safe than sorry.

So on to the hospital to meet with Dr M and Anna.  First the good news…..the scan shows a ‘remarkable’ (Dr M’s carefully chosen word) reduction in Bertie…woo hoo!  I am ecstatic and flooded with relief.  They cannot give me a % reduction as that information is not available yet, but visually, it has shrunk in all directions.  I am not out of the woods yet, but heading in the right direction.

Then the bad news – A blood clot (he might have said pulmonary embolism, but I can’t remember) has formed on my right lung sometime between my PET scan – 29th July and now.  This is a known side effect of chemo.  Obviously this is potentially life threatening and has to be treated now by way of a Heparin injection daily for 6 months to thin the blood.  I briefly thought he would say injections for a week or so, but no 6 long months.  Bertie has been pressing on my organs, the lungs being one of them, so has restricted flow of blood through the veins there, which is why I now have the clot apparently.

How to administer the injections? They have to be done at exactly the same time every day.  So 4 choices: 1. one of my doctor/nurse friends could offer to commit to do it every day for 6 months, but although they love me, possibly not that much  2. A District Nurse could visit me every single day, but that doesn’t seem like a good use of NHS resources.  3. Pat could do it, but he is at work mostly, so the timings may be off.  4. I have to man up and do it myself and that is what we decide.  A District Nurse will visit me at home tomorrow to do the first one – like an old person.  I then have to call Anna to tell her what time that was administered then go to the hospital on Wednesday at that same time for her to show me how to do it.  I am sent away with several large boxes of pre-prepared syringes of Heparin.

It’s hard to believe the number of medical issues I am having.  I perhaps should be more bothered by the blood clot issue, but it seems insignificant in the scheme of things and fully resolvable, although I’ve got to look forward to my legs and stomach resembling a  pin cushion.

Wed 01/11/17 – CT Scan mid treatment – 3 mths 11 days

NHS staff 8, cumulative 212

I wasn’t going to post for a few days, but people are asking about the scan, so a quick update…..

A host of therapies for this post.  Thu 26/10 I had a very firm (that’s good) aromatherapy massage by Debbie at St. Teresa’s hospice. Fri 27/10 was a very helpful hypnotherapy session with Fiona, concentrating on finding my mojo after losing positivity last week and Mon 30/10 was a fab reflexology session at the hospital.

On Sun 29/10 Pat and I went to the Crown Inn at at Mickleton in Teesdale and stayed in the camper van for one night on their immaculate campsite.  We had a 3 course Sunday lunch followed by nearly falling asleep in cosy armchairs by their roaring fire – very nice.  Monday morning we had an early 5 mile round trip walk to Middleton and had the best bacon buttie for many a year (Pat had an excellent egg buttie) for breakfast and then made our way home.  This was a successful trip and showed that we can get away despite my treatment, so we are busy planning more one night trips – I’m not sure I could deal with two nights currently.

Tue 31 Oct

Today is the big day, but first in the morning I had the normal blood count tests and they will ring me if anything is wrong with them, so I am to turn up as normal on Thursday for cycle 4 of chemo.  Then I had a review meeting with Dr M although not a lot to review until the scan results are in, we chat about my side effects and progress so far and the process still to undertake.  He reiterates that the final PET scan after cycle 6 may well show some residue of Bertie – scar tissue etc, but we’ll wait and see.  I log my side effects and how I am feeling every day and I should really print it out and take it along to these meetings because I forget to tell Dr M some of what I should.  Yesterday I woke up with the dreaded shingles yet again, this is really tiresome having it multiple times in one year.  Last Thursday, I developed a small lump in the vein on the back of my hand, which is painful to touch.  I suspect its a small blood clot and should have mentioned it, although Google tells me it will disappear in 2-6 weeks.  I’ll try to remember to show the nurse on Thursday or failing that the Dermatologist next Monday.  I couldn’t find the time to work even if I wanted to, with all these appointments.

In the afternoon, back to the hospital for the all important CT scan.  I am seated by a nurse in the waiting area next to a fella who reeks of alcohol, it is quite nauseating, while she makes sure we drink 3 glasses of water each in 15 minutes.  There is nowhere for me to move to, so I try not to breathe while he is there. Then I change into a gown and make myself comfortable on the scanner table.  A nurse inserts a cannula into my arm, then the bed slides into the scanner.  The Radiologist lets me know over the intercom  that they are just about to start injecting dye into me, its very warm and makes you want to pee.  An automated voice tells me when to take deep breaths as the bed slides in and out, then I’m done.  The whole process takes 45 minutes start to finish.

Dr M had told me he will ring me with the results, maybe Thursday.  Only 2 days to wait, but will feel like an eternity.  I promise to post the results as soon as I have them.

Wed 01 Nov

Well, here’s another minute of fame for me, a little article appeared in the Northern Echo today about the Look Good Feel Better workshops which if you remember, I attended the inaugural one at the start of my treatment.  I hope it encourages other women in the area to take advantage of it too.

Article in Northern Echo

Wed 25/10/17 – Shifting Sands – 3 mths 5 days

NHS staff 3, cumulative 204

Well, it wouldn’t be business as usual without a little trip to hospital.  During chemo sessions, a cannula is normally inserted into the back of your hand through which the chemicals can be fed. During my cycle 2 session on 21 September, 5 weeks ago, my veins were too fine (nurses’ words) to do this so that they had to put one in my forearm.  The day after and ever since, there has been a slight inflammation two inches long on the vein and it has started to grow hard and lumpy.  With the myriad of things wrong with me at the moment, I paid it no mind, but last Sunday I finally thought I should do something about it, so I emailed Nicky and sent her a photo.  Monday morning at 8.30 am, Anna, another Clinical Nurse Specialist (Nicky on holiday?) rang me at home to ask me to come to the hospital at 2.00 pm that afternoon so she could investigate further as she suspected Phlebitis which is inflammation of the vein caused by a blood clot – my medical vocabulary is expanding by the week!  On the dot of 2.00 pm Anna picked me up from the ward waiting room to take a look.  After consultation between her and another nurse, they decided it wasn’t Phlebitis but just a track mark (like a junkie) and I could rest easy. it would just go within a few months.  Anna then took 10 minutes to just chat to me about how I was feeling emotionally and mentally and we had a hug at the end and she reiterated what Nicky had said – if I wanted to talk to someone, even if I just wanted to cry at someone, just call them.  I love these nurses, my box of chocolates every 3 weeks just does not seem adequate thanks.

Since my last post,  it has been mid cycle for me, day 7-14 and therefore I’ve had a lousy week, with all the usual lethargy,  pain, nausea etc, with the added bonus of mouth ulcers.  Although I can have a glass of wine, the metallic taste I have means I can’t enjoy it, therefore I’ve had none, nothing but water for me. The upside has been that I can eat anything I like as long as it’s ice cream. That and eggs are the only food palatable to me during this period. It’s not the most nutritional diet I’ve ever had.  I know I bang on about day 7 -14, but that’s because when I talk to you in the flesh, you have a clue what I’m talking about.

When faced with cancer, there are two ways you can deal with it once the inital shock and upset have passed. You can either descend into hopelessness and despair or you can just get on with it and try to battle on. It’s a fine line though and this last week especially I found myself teetering back and forth across that line.

I’ve been told I’m being brave. The definition of brave is to be ready to face or endure pain or danger.  Firemen and Soldiers are brave. I merely have no choice but to endure what has been forced on me, I am still not ready to face this and by definition therefore not brave, merely enduring.

One tool to remain on the up side is Positivity. Cancer support websites, friends and family encourage me to stay positive. I even tell myself the same thing.  Sometimes though, I wonder who I am staying positive for. Is it for my friends and family, so I spare them the true horror of what I am going through or is it for myself to avoid thinking about the alternatives? Just sometimes I want the freedom to feel sad and sorry for myself and scream and shout about how unfair this is, because this is actually the most unpositive experience of my life.

I’m now three months into what will probably be a seven month process plus another six months recuperation and I must admit to be very hacked off with it.  It’s like groundhog day every day, the continual poor health, not doing anything or going anywhere, sometimes barely able to muster the strength to answer the door, I think I may go demented after another four months of this. This week, I’ve upset myself further by contemplating what will happen if the treatment doesn’t work and I end up with the oft quoted ‘long battle with cancer’.  Long months or years of treatments, stem cell transplants, clinical trials etc., etc. i.e. No life to speak of. I don’t think I’ll manage to shift this mood until I know the results of the CT scan next week.

One day this week, since I got out of bed, my mood was very low and I was silently weeping all day which is very unlike me but I just couldn’t stop.  I have been having a lot of email correspondence lately with the media team at Macmillan HQ in London as they may want to use me as a case study for a new project.  They emailed me as I was at my computer trying to complete a grant application for the council.  Without fail they always ask how I’m doing and how I’m feeling, I replied that it was a bad day thanks.  It then turned into a back and forth email counselling session with me sobbing over the keyboard.  They urged me to call the Macmillan support line, which I contemplated but didn’t.  I eventually gathered myself and rattled off the application.

There was a heartbreaking moment too at the weekend. Pat and I went for a local stroll so I could get some air and have a change of scenery. This involved walking up a hill nearby and I had to stop every ten steps or so because my breathing was so restricted. He told me later that day that it had made him cry to see me like that.  It’s so hard for him, he cannot do anything to fix this and that makes him feel useless, but of course he does and says a hundred things every day that makes life for me as easy as possible and keeps my spirits up, and that is priceless.

Now we have got used to how I’m going to feel at different times in the cycles, we are going to risk a much needed one night break away in the camper van this weekend.  We’re off to Teesdale for a little walk and Sunday Lunch at the Crown in Mickleton.  Hope the weather stays fair and my sleeplessness does not cause Pat to regret it.  Its our first time away since early July and we are both looking forward to it.

I know this has been a gloomy post and I’ll try next time to bring some humour back.  Next week is chock full of appointments, therapies and the all important CT scan, so something funny must surely happen.

A random thing to lighten the mood: I use Google Keep to make my shopping list (its fantastic in its simplicity for lists and syncs across all devices) and it uses predictive text.  when I was in Sainsburys this week, I was momentarily befuddled when it told me I needed to purchase some peasants (peas).

Another one: When driving my little MX5, Fitbit records it as ‘Outdoor Bike’ exercise, no steps, just exercise.  I am quite taken with achieving some exercise with no effort.

So as I try and lift my mood I’ll follow my new favourite quote:

“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.” – Mary Anne Radmacher.

Tue 17/10/17 – Black spot – 2 mths 27 days

NHS staff 7, cumulative 201

Tue 10 Oct

Today was normal blood tests at the hospital to make sure the counts were high enough for chemo on Thursday together with a review meeting with Dr M..  They were just, so full steam ahead Thursday.  Dr M mentioned that it may be the case that when we get to the end of the chemo treatment, and I have a PET scan, it may still show some remnants of Bertie left because he was so big to begin with and therefore a lot to shrink, but the Radiotherapy will deal with that.  This is a bit unnerving to hear, as all along he has been confident that Bertie will be gone and as a consequence I feel a little depressed for a few days after.

Thu 12 Oct

Chemo day – start of cycle 3 which went off without a hitch.

Fri 13 Oct

After a rough few months, we decided I needed some cheering up and good news. So today I picked up a little present to myself – a lovely, lovely MX5 – I can’t stop smiling.  I love these cars and have had 5 previously.  This is the car I am meant to drive and will keep doing so until a winch is required to get me out of it – it’s very low.  These last few months have taught us how precious life is, so we are not putting off until tomorrow what we can do now.

Mon 16 Oct

Having cancer makes you paranoid about the slightest thing wrong with you, perceived or real.  Since losing my hair, I’ve discovered a little bump on the top of my head and also noticed a little black bump on my lip and the moles on my back seem to be multiplying.  I  imagine the worst and see my GP, Dr Mark today about it all.  He sees no cause for concern but decides that given my circumstances I need to see a dermatologist and rather than wait 3 months for an appointment with a visiting one he is referring me straight away to a clinic. Hopefully I’ll get an appointment in a couple of weeks and will be able to put my mind at rest.

My eyelashes and eyebrows are now going the same way as my hair, I wonder if they’ll grow back?

I’ve had an appointment through for my mid treatment CT Scan on 31st October, 2 weeks from today.  This will show whether the treatment is working or not, so of course the anxiety levels will begin to creep up as I near the date.  Has it worked? Has it worked as well as Dr M expected? What if it hasn’t worked? I guess I just have to keep waiting.

Tue 17 Oct

I’ve felt surprisingly well since chemo last Thursday with more energy than I’ve had for a while. Unfortunately,  during a quick drink in the Fox after Uke Club,  I started to crash and burn and could feel it starting to kick in……….. Oh, well, almost feeling normal was nice while it lasted.

 

 

 

Mon 09/10/2017 – Baby steps – 2 mths 19 days

NHS staff 1, cumulative 194

Today I received a heavenly Indian Head Massage from Caroline, the Complimentary Therapist at the hospital.  I still can’t quite believe I receive these treatments for free, but am definitely not complaining.

The real reason though, for this quick update today is that I forgot to mention yesterday that here and there, but not all the time, I having been walking around with my trousers done up without thinking about it, or feeling uncomfortable,  unheard of since late Spring. It still doesn’t happen when sitting, but still, some progress I feel.

 

Sun 08/10/17 – Musings – 2 mths 18 days

NHS staff 0 (miracle) – cumulative 193

Well in a week with not a single medical appointment, the first time since the beginning of August, I congratulate myself for managing to stay out of hospital during this second cycle of chemo.

On Wednesday, I decided to share my news more widely with friends on Facebook after 2 months of living with Bertie.  I think its taken me some time to come to terms with my illness, but now I feel it doesn’t really matter who knows.  I’m glad I did, I received tons of messages and emails from people I haven’t seen in over 20 years. so now nice to catch up with.  People will also now understand why we celebrated our 24th wedding anniversary so much, because at the time we had no idea whether I would be here to celebrate our 25th in 2018.  But of course now I am fairly confident that I will be.

I’m also becoming braver about answering the door with no hat on as my current baldness is not something I’m trying to hide, it is a fact of life.  I do still wear a hat outside as its pretty chilly without.

I’ve had an appointment through for 13th Jan 2018 with Dr Kagzi who works mostly out of James Cook hospital.  Of course it didn’t say what the appointment was for, but on checking with Nicky, I find out its for my Radiotherapy Assessment.  How fabulous to be starting to plan for life after chemo.  I will be a third of the way through chemo treatment in a couple of days, so am slowly trundling along the progress trail.

People keep asking me how I feel and what its physically like to be going through chemotherapy treatment.  Because some of the time I look fairly well, its hard to imagine that the chemo is working ‘behind the scenes’ over a period of weeks and you can’t always see the physical effects, and I am actually generally feeling pretty lousy.

Because no one receives exactly the same cocktail and quantities of chemicals during chemo, and because everyone is physically different, no-one reacts in exactly the same way as another might. After 2 cycles (21 days each), for me, there is a bit of a pattern emerging.  Day 1 to 14 I have a strong metallic taste in my mouth which means all food tastes like cardboard.  For 4 or 5 days mid cycle, the Rituximab is attaching itself to the cancer cells causing me quite a bit of pain.  I sleep very poorly the whole time and am therefore permanently tired and also fatigued.  My stomach is permanently upset, and I permanently feel like I am recovering from both the flu and gastroenteritis.  During day 7 -14, my face changes colour often from various shades of grey to pale yellow, making me look almost ghostly.  And of course, I constantly feel like doing nothing.  On about day 17 I start to pick up a bit and have a few days where I have a bit more energy before the next cycle starts.

During this cycle, I haven’t had a sore mouth which is a bonus.  On day 7 though I lost my appetite for a week and started to feel nauseous.  This was stopped in its tracks by some pre-emptive anti-sickness pills given to me by the hospital.  The thought of eating ham or fish, which I usually eat turned my stomach.  In desperation one day after eating nothing all day, Pat went out at 8:30 pm and came back with a tub of Madagascan vanilla ice cream which went down a treat.  Bizarrely, the next day, I couldn’t eat ice cream, but could eat 2 steak pies.  Pies! I never eat pies.  I’m please to report that it was a one day pie fad.  Most concerning of all was that I completely went off chocolate and wine, catastrophe.  Thankfully my wine taste buds returned on day 15.

I would like to say thank you to Colin and Christine who have been working miracles in my garden, pruning, cutting back and generally getting it ready for winter, which is no easy task in such a big garden.  I am capable of half an hour’s gardening every 3 weeks which is nowhere near enough, so am very grateful to them both.

Finally, there is a permanent reminder to me of what I’ve been going through – click the link.

Fame at last

Thu 28/09/17 – Reality check – 2 mths 8 days

NHS staff 1, cumulative 193

Pat and I had our flu jabs on Wednesday, because if I get flu it’s curtains, ok an exaggeration but definitely a spell in hospital.

So far, I’ve posted very smiley and upbeat photos, but I thought I would show you what it means when the chemo kicks in.

This is yesterday evening, day 7 of the second 21 day cycle.  Day 7 to 14 is generally when you are at your worst and your immune system is totally compromised.  Pat is sitting in a T-shirt complaining about the heat, I have a hat, scarf, 2 x fleeces and 2 x blankets on me and still I am shivering.  The Rituximab has started attacking the nasty cells which in turn generates continuous pain for me and I can hardly keep my eyes open.  My temperature is starting to climb and reaches 38.3, and although we are supposed to, neither of us can be bothered to call the hospital.  Thankfully it had reverted to normal by this morning.

I had plans to concentrate on my sax, uke and Italian while I’m stuck at home, but the reality is, its hard to focus and motivate yourself when all you want to do is curl up in a ball and sleep, so if it happens, it happens, if not it’s no great shakes.

The next milestone is a CT scan after the third cycle of chemo (12 Oct) and before the fourth (2 Nov), though what date that will take place, I have yet to find out.  This will be to check that the chemo is actually shrinking Bertie, so of course the anxiety levels will ramp up nearer the day.  I don’t expect to have any updates before then unless I have to go into hospital with an infection, but I will try my hardest to avoid that if only to not experience the antibiotics again.

Tue 26/09/17 – New hair – 2 mths 6 days

NHS staff 13, cumulative 192

Before I start, I just want to send huge hugs and love to my Aunt Astrid in Denmark.  She is much much further along in her diagnosis and treatment and is currently undergoing yet another round of chemotherapy and is really suffering terribly.  You are constantly in our thoughts Astrid.  Cancer is just so brutal.

Tues 19 Sep

Today is routine blood tests to make sure my neutrophil count has increased enough to go ahead with chemo on Thursday, followed by a review meeting with Dr M.

Dr M says that the count is up to 3.8, so we’re on for Thursday, which is a great relief to me.  He tells me that my Lymphoma is Stage 3, i.e. it was found above and below the diaphragm.  He also warns me that the cumulative effects of the chemo will get worse as my body finds it harder to recover each time – something to look forward to.

After the meeting its wig choosing time.  Isabel comes with me for a second opinion rather than Pat as we all feel that otherwise I could end up looking like Bet Lynch.  The wigs are surprisingly realistic and the 2 ladies are very patient.  We try several styles in different colours and settle on one.  I have to go to Bishop Auckland hospital next week for it to be trimmed and finally fitted.

Thu 21 Sep

Second chemo cycle today and I arrive at the ward at 9.30 only to be told my drugs have not yet been prepared by the pharmacy, and to come back in 2 hours – what a chew on. Someone has cocked up I think, but I am no position to complain, so Pat has to come and pick me up, then take me back again.  It would be a bugger if you had no transport which not everyone has.

I won’t go into into detail about the chemo, it is exactly the same as last time and went without a hitch, although this time it took 5 hours instead of 7.  Here is a photo of it in action (or no action, quite boring).

Sat 23 Sep

Our household has not exactly been a bundle of joy lately, so we decide to have a night out for some light relief, a theatre production in Neasham Reading Room.  Its very good, but I discover I cannot sit upright for that long and have to go home half way through.  It is such a drag this existing and not living, I’m getting quite frustrated by it all, not being able to go anywhere or do anything or make any plans.

Mon 25 Sep

Since I was discharged from the hospital on the 15th, I have been suffering severe gastric issues as a side effect of the antibiotics I had to take – 10 days of it has been quite rough. Its cleared up today though, just in time to make way for the coming side effects of the chemo on Wednesday – my life currently is one endless ball of fun.

A little ray of light today in the form of a heavenly aromatherapy massage at the hospital courtesy of the lovely Caroline.  Gigi the staff nurse on the ward was alarmed to see me, but I assured her I was fine and had just come to be pampered.  I can do this every 2 weeks apparently at the hospital which is great.

Next its to Bishop Auckland hospital for my wig fitting.  The girls decide that first they need to fix what my previous hairdresser hadn’t quite finished (Pat!) and proceed to close shave my head of all the little tufty bits, I am now quite bald and have a lovely shaped head apparently.  The wig is trimmed and looks fine, although I’m not sure I’ll wear it as I’m quite taken with wearing hats currently.  It costs just a little over £200, blimey!  But the NHS, with my medical exemption cough up £150 and again with the medical exemption I don’t have to pay Vat, so it actually costs me £35 and can use it in fancy dress next year.  I have called it Yorrick – alas!

I’ve thought long and hard about whether I’m ready to ‘brave the bald’ and concluded that to hell with it why not.  So to end, I leave you with a selection of photos of my new seasonal looks, including one of my new handmade winter hat just for the hell of it – yeah!

 

Boom, boom!

Fri 15/09/17 – Admission to hospital – 1 mth 25 days

NHS staff 42, cumulative 179

This was supposed to be a quiet week for me, but as we’re finding out, I don’t do things by halves………

Tues 12 Sep

Overnight, the abdominal pain has disappeared and although I only got 1 1/2 hours sleep, I feel like a spring chicken today, full of energy, the best I’ve felt for 2 months.

I see the GP to get some different sleeping tablets, as the one’s I’ve got are not really up to the job plus some medical grade mouthwash.

Once out of the starting blocks on Monday, my hair also disappeared quicker than you can say Mo Farrah.  In the afternoon,  every time I moved my head, hair fell out, if I touched my head, hair fell out. I ended up putting my head over the bin and just running my hands through the hair and watched most of it go. Unbelievable sight.

When Pat got home from work, we decided the only option was to shave the remaining hair off.  So we had our ‘Out of Africa’ moment, with Pat shaving my head. He is not a natural hairdresser though, so it took a while, with a few tufty looks until the finished article. It’s a bit patchy and probably won’t last more than a day or so, but it’s better than finding hair all over the house.

My ears have not seen the light of day for a few years,  and flippin ‘eck, they’re freezing!

A few people have asked how I feel about losing my hair.  To be honest, I’d rather lose my hair – it will grow back –  and be alive than have a full head of hair and be dead – its that simple.  My hair had been coming out gradually for more than a year every time I had had a shower, I just hadn’t realised the significance and joined up the dots.  I don’t much care for my hair anyway, so I’m really looking forward to it growing back a different colour and texture and eventually having thick lustrous locks.  see the end of today’s post for photos.

Wed 13 Sep

I still feel like a spring chicken today,  although the chemo has decided to attack my mouth – its a thing apparently.  My gums are starting to split and bleed.  If you imagine scalding your mouth with some hot food, my whole mouth feels like that – its a bit grim.

In the evening, my throat is sore and swells a bit as does the base of my tongue and my temperature is high – a sign of infection.  I phone the hospital at 7.30pm and have to go in immediately.

I have blood tests which show my neutrophil (a white blood cell necessary to fight infection) count is 0.5. It should be between 2 and 7.5.  I have severe neutropenia and at 1.00 in the morning they decide I have to be admitted to the acute ward – yawn, yawn.  The doctor looks at my throat and tongue and confirms mild inflammation. She doesn’t look at my gums.

I eventually get to bed at 2.30 in the morning. I am given a private room in the acute ward so I am not breathing sick people’s germs, and the toilet opposite is reserved for me alone, after being given a clean down.

Thu 14 Sep

At 7.00am I’m woken and taken down to X-ray for a chest X-ray.  To this day I don’t know why or what the results are.

Later in the morning, another doctor comes and tells me they are going to start IV antibiotics immediately to prevent me from getting Sepsis which is life threatening.  They will keep me in until my neutrophil count rises to a satisfactory level – which is what? – apparently that will be up to Dr Mounter. This could take up to 5 days and will probably delay my Chemo next Thursday – B******s! Pat says FFS!

During the day I am seen by 2 pharmacists and 2 more doctors.  They are working out which and how much antibiotics to give me and 2 more sets of blood tests to check my counts.  My count has risen to 0.6.  The swelling in my throat is receding.

At 8.00pm I’m moved back to ward 42 to my own room – great, more familiar territory and people.

Fri 15 Sep

Blood tests at 6.00am and another doctor, tho’ for the life of me I can’t remember why.  I do remember telling him I feel like a spring chicken and could probably go jogging.

At 8.00, a doctor comes and takes blood samples and blood cultures into bottles that look strangely like mini fever tree bottles.  while he is there, a lady asks me what I want for breakfast – 2 slices of toast please – the doctor tells her to double it – it looks like I’m back to marathon eating.

I get in the shower and whats left of my hair comes out – it takes 20 minutes to do so.  I have to apologise to the cleaner because I might have blocked the drain – I think she’s used to it.

At 10.00am 2 more doctors come to see me.  At last some doctors that I’d seen before, for shingles and the ‘smart cookie’ one, Dr Ali.  I was beginning to wonder how many doctors I would go through before I saw one I’d seen before.  We discuss how I am. The shingles Dr tells me he wants to keep me in over the weekend so I can continue to have antibiotics and then check my counts on Monday.  I ask him if its possible to have the antibiotics at home – he will check with Dr Mounter who is now back from holiday.

2.00pm and my saviour, aka Dr Mounter, Dr M now I think, comes to see me – he’s sooo nice.  He opens by saying that that its a bit of an understatement to say a lot has happened to me since he last saw me pre-biopsy, while he’s been on holiday.  I’ll say!  I wish I could be seriously ill normally without all the added drama, but then again I would have nothing to blog about.  He tells me that my Lymphoma is low grade, but they are treating it as high grade because it had turned aggressive, but again they fully expect to cure it.  I say from everything I have read, what I have is not curable, and he reiterates that they will.

He is happy with the trajectory of my blood counts – it is now 1, and we can go ahead with the scheduled chemo Thursday subject to blood tests Tuesday.  Am I happy to go home and take oral antibiotics until I see him Tuesday – not ‘arf! I could kiss him.  It won’t be until after 5.00pm because that’s when the pharmacy deliver prescriptions to wards.

Tuesday hair going…..

Thursday – almost gone….

Thursday – how you’ll see me for the next 6 months!

Ciao!

Mon 11/09/17 – First hair loss – 1 mth 21 days

NHS staff 2,  cumulative 137

Fri 8 Sep

Up to now I have not experienced any pain, apart from my biopsy trauma, but today it starts. Bertie is on fire. I now have continuous pain, little shooting pains, zip zapping and my abdomen feels really tender. If you imagine the kind of pain you have when your stomach is really upset, it’s a bit similar. The only relief I can get is lying on my right side in bed.

This pain is the chemo working, attacking and killing the cancerous cells, so really I should welcome it, but its a bit debilitating..

It’s Pat’s birthday today, but we are not really in a celebratory mood.

Sun 10 Sep

Bit of a shock today when I am totally wiped out by lunchtime, I just don’t have enough energy to sit upright and have to go off to bed until Monday.

I’m feeling a bit sorry for myself today. It seems that Bertie is consuming our life. This is to be my boring existence for 6 months, it’s very depressing to contemplate.

Mon 11 Sep

Well, in the shower this morning washing my hair, I ended up with a tiny clump of hair in my hand. So it seems that my hair has started its bid for freedom.  I was expecting this and was prepared for it but it is still upsetting. I order 4 more hats immediately.

I have been referred by Nicky to a Well Being Clinic today for seriously ill people at St Teresa’s Hospice in Darlington.  I go along to see what it’s all about and amongst other things we do a bit of Tai Chi and Indonesian finger holding.  I decide that this is not really for me but will attend the one other session I am booked for anyway.

During a meditation in this session, I find myself inexplicably welling up and let out an involuntary sob, which I try and disguise as a cough, how embarrassing!  I think the full force of trying to come to terms with being seriously ill coupled with the start of my hair loss, hits me like a freight train.

I try and pull myself together and reason with myself that I am in a better situation than some. I am having treatment and will probably go back to normal life in a year. The girl next to me in the session for example, has a seizure just about every hour, and the man opposite has terminal cancer. I need to get my s**t together!

The good thing to come out of this session, is that Debbie, the lady that runs it is going to book me in for massages and acupuncture and I’m free to use their on-site hairdressing service, both now and for my wig. This is all free to me.

Before my diagnosis, I had no real idea of the support system that wraps around you when you are diagnosed with cancer, both from the NHS, Macmillan and St Teresa’s Hospice. I decide that I’m going to change my will this week to leave a substantial legacy to both charities St Teresa’s Hospice and Macmillan, as they do incredible work.

In the evening, my mouth becomes sore for the first time.

After a gloomy few days, there is also some positive news. I have been able to take a deep breath for the first time in many months.  This is because the pressure on my diaphragm has eased. For the last year when I’ve had the urge to pee, I had to immediately.  That has now stopped because the pressure from Bertie on my bladder has eased.  Bertie starts at the base of my sternum, near the surface of my skin, then burrows deeper to finish just to the left and above my belly button. If you remember, way back at day zero minus 1, I discovered a rock hard mass near the surface of my skin at the base of my sternum about the size of the bottom of a pint glass? That has either disappeared or at least softened.

So although there is no measurable reduction in the size of my abdomen and stomach (I measure every day), there is some progress.

Those symptoms that I had just put down to the ageing process are disappearing.  Perhaps when this is all over, I’m going to feel younger and rejuvenated.

Tina – rebooted!

Fri 08/09/17 – Look Good workshop – 1 mth 18 days

NHS Staff 12, cumulative 135

I hadn’t expected to post an update, but I have a few things to say.

A couple of you have asked why I don’t call Dr Mounter Dr Phil – because he is like God to me, that’s why!

Mon 4 Sep

First time I’ve used the free parking permit today and I felt a little bit smug.

Now, I am not a plastered in make-up kinda gal, so it was with some scepticism that that I accepted my invite to Darlington Hospital’s inaugural ‘Look Good Feel Better’  (LGFB) Masterclass for women living with cancer. I have rapidly realised that any opportunity given to me that offers any kind of positive experience during the worst time of my life is to be whole-heartedly embraced.

LGFB is a national charity offering workshops to women in nearly 100 hospitals in the UK. Their sole purpose is to offer free services for women struggling with the visible effects of cancer. Workshops are delivered by beauty industry volunteers with products donated by manufacturers. The idea is to help with self confidence and well being.

The workshop is held in the Memorial Hall Boardroom which is huge and very grand. We are a group of 8 women and the added bonus for me was meeting women my own age, as opposed to the elderly in the Rosin Unit, supporting each other and sharing experiences.  When the team ask for a volunteer to be the the model, my arm shoots up seemingly of its own accord. What is wrong with me! My pre cancer self is horrified at this turn of events, but my life has changed forever and I am no longer that woman.  In for a penny in for a pound, I also agree to be photographed to be used as PR for this new Darlington project.  The NHS cancer team have apparently worked really hard to bring this project to Darlington and they are to be applauded. Six of them are also here and it was good to chat to them.

We are fed kit-kats and profiteroles and I am totally pampered as the model, and find the whole thing really uplifting and enjoyable. It is a relief to have something fun to focus on after the past 6 weeks of only living with diagnosis and treatment. They show us how to cope with the loss of eyebrows and eye lashes which I think will be useful. We women are also noticed smiling and laughing. I think the results are pretty good.  We all left with a spring in our step and a goodie bag crammed full.

 

Tue 5 Sep

Back to the hospital,  this time for my heart echo scan.  Wired up with pads and sensors, and then a kind of ultrasound process.  Unremarkable half hour procedure.  I get the results when I see Dr Mounter.

I visit the Macmillan unit in the hospital for the first time which up until now I had avoided. I pick up a couple of additional books including ‘Travel with cancer’ and a list of travel insurers that are sympathetic to providing travel insurance to people with cancer. I can’t travel for 1 year, but am planning ahead.

I actually visit the Macmillan website practically every day. It is a goldmine of information for people facing cancer, everything and anything you need to know about cancer can be found there.  I particularly like the online community section, hearing first-hand how other people have experienced cancer and how they have coped.

As to any more side effects following Chemo,  I have an ever present metallic taste in my mouth as well as the continuing lethargy and fatigue, but that’s it so far.

It is beginning to dawn on me how my day to day living is going to be curtailed by my treatment.  Nicky, my clinical nurse told me that I need to check with her any plans I have to ensure it doesn’t compromise my treatment.

So, I can attend my Thursday Pilates class on the day of chemo only, and not the following 2 Thursdays.  In April, I finally managed to get referred to a knee clinic to try and stop my knees swelling when skiing – I have a reconstructed cruciate ligament in each knee.  The clinic is every Monday in September.  I am allowed to attend 2 instead of 4 – its a moot point anyway as I cannot go skiing the next season.  Pat and I can go away in the van 3 or 4 days either side of chemo and that’s it.  Christine came to do some gardening for me and brought Rolo, her dog and we normally make a big fuss of each other.  I have to stay away from Pets however, so Rolo and I are reduced to looking at each other mournfully through the window – he thinks he’s been naughty.  I wanted to book onto a Tees Rediscovered Walk next Tuesday involving a boat trip from Preston Park to Yarm and then walk back via the Teesdale Way – this apparently is out of the question.

How critical these precautions are is brought home to me at 10:30 on Wednesday evening.  I have a long list of side effects that if they occur, I have to call the hospital straight away, not wait until the morning but immediately.  My temperature is 39.3 deg., 37.5 deg. being the safe limit.  Pat forces me to call them and I have to go in immediately with a packed bag for blood tests and monitoring. We wait an hour for the results of the bloods and then I am checked out by a doctor. The bloods are ok, no infection, but show that I am mildly neutropenic – low white blood cell count – to be expected, and I am just hot. I am allowed home and we arrive back at 1:00pm.

Sun 03/09/17 – First chemo session – 1 mth 13 days

NHS staff 9, cumulative 123

Before the main event this week, I had blood tests at the GP surgery in preparation for my free NHS health check, resulting in the most spectacular bruise on my arm – I am beginning to look like a junkie.  Either the nurse wasn’t great at sticking the needle in or there is something wrong with me!

So, to Thursday and D-Day.  I am the first to arrive at the Rosin Unit in Darlington and the last to leave.  I decide to get off on a good foot with the nurses and take them a huge box of chocolates which I think went down well.

Pat comes with me, but we both realise after a short while that it is futile him being there, a complete waste of his time watching me sleep, so off he goes.

I am placed in a nice comfy recliner opposite a flat screen TV.  As no-one else is there, I decide to snaffle the remote and eventually it becomes buried under paraphernalia on my table.  As a result, for the rest of the day, the whole unit is forced to watch BBC1 all day because no-one can find the remote while I happily drift in and out of sleep as a result of the anti-histamine.

This is a bittersweet moment for me.  Positive because Bertie will finally get to be attacked and sent on his way, but I am also really nervous because I know that two of the chemicals I am to receive are toxic and will also do me some harm, and there are all sorts of reactions and side effects I might get during treatment.   I wonder if I will be able to feel the toxicity coursing through my veins?  No is the answer.

I describe the whole process more for the benefit of my memories than anything else, so please bear with me.

A cannula is inserted into my hand and I’m given some paracetamol, an anti-sickness pill, anti-histamine intravenously and 16 steroids.  Lord in heaven, smack me with a duck – 16 steroids!  My normal dose has been 4 per day and that has played havoc with my sleep, 16 is going to send me high as a kite and away with the fairies and Peter Pan.

We then have to wait an hour for these meds to kick in.  Meanwhile, Nicky pops to see me and tells me that from the blood tests the week before, My LDH levels are normal and so I probably won’t have to be admitted – great, I can stay awake in my own bed tonight. High LDH levels can indicate tissue damage in the kidneys, so that’s one less thing to worry about. The only logistical issue is that Pat has arranged to go to Newark to pick up a new boat so I need to make alternative arrangements for getting home – thanks Bernie and Christine.

At 10:30, the main weapon is deployed – Rituximab – The R in R-Chop.  This is infused very slowly over 5 hours as its my first time and they need to constantly monitor me to be sure of no reaction.  Rituximab is a biological antibody therapy which targets a protein called CD20 on the surface of the lymphoma cells. The antibody sticks to all the CD20 proteins it finds. Then the cells of the immune system pick out the marked cells and kill them.  Rituximab is apparently the world’s 5th best selling pharmaceutical product.

I read every inch of the paperwork on my table and discover on one of the charts that my Lymphoma is stated as Diffuse B Cell Lymphoma, I thought I had Follicular NHL, they are 2 completely different cancers.  Also they have me down as 6ft 5in tall.  I emailed Nicky immediately to obtain clarification and she comes to the unit straight away to apologise and explain that yes it is Follicular and not Diffuse B Cell which was selected on the computer purely to generate the correct chemicals.

While she is there, my throat suddenly swells and become sore.  They immediately stop the infusion and swap it for a pouch of hydro-cortisone which magically makes it disappear in 10 minutes.  Infusion is restarted.

Incidentally, about 1,900 people are diagnosed with Follicular NHL every year in the UK, and it can occur at any age, but the average age at diagnosis is around 65. In most cases, there is no known cause, so I’ve just been unlucky.

Other patients come and go during the day, some staying a few hours, others for only an hour.  I think patients have their treatment on the same day during whatever cycle they are on.  I was hoping to find a ‘cancer buddy’, someone who would be there the same days as me and we could chat and bond etc., but everyone else is quite elderly so I think I’m going to be stuck with my downloads and books.

It’s actually an underwhelming process, quite boring and I feel like I’m sat in a care home for the elderly.  I imagine a Little Britain sketch where in an attempt to liven things up I lead a synchronised ballroom dancing session, our partners being our mobile drip trolleys – it amuses me!

During the afternoon, I hear the unmistakable dulcet tones of an old acquaintance of mine, Chris, the partner of a lady cyclist living near to me.  He has been living with cancer since 2003 and has popped in for some hormone replacements.  We have big hugs  and commiserate with each other.

At 3:30 pm. the Rituximab is finished.  The rest of the R-Chop chemicals are then administered in quick succession.

Cyclophosphamide works by sticking to one of the cancer cell’s DNA strands. The cell cannot then divide into 2 new cells.

Hydroxydaunorubicin slows or stops the growth of cancer cells by blocking an enzyme called topo isomerase 2. Cancer cells need this enzyme to divide and grow.

Oncovin works by stopping the cancer cells from separating into 2 new cells.

Prednisolone – steroids already given first.  Steroids can treat the cancer itself, reduce inflammation, reduce the immune response, help reduce sickness when having chemotherapy, improve your appetite, help control many body functions including: how your body uses food to produce energy (metabolism), keeping the balance of salt and water in your body, regulating blood pressure, reducing allergies and inflammation, controlling mood and behaviour.

I am all done by 4:30 and can go home.  The nurse tells me that my next session is in 3 weeks on Thursday 21st September, preceded by a review meeting with Dr Mounter and blood tests on the Tuesday.  Now I’m confused, I was under the impression that my chemo cycle was 3 weeks on 1 week off. I emailed Nicky to clarify and as usual I’m completely wrong and my cycle is confirmed as 1 session every 3 weeks.  This is much more palatable to me.  I am sent home with 22 pills a day to take for 4 days afterwards: anti-sickness, laxative, steroids, kidney protector.

I expected to wake up Friday morning with a flat stomach but that didn’t happen and as at Sunday morning there is no noticeable reduction in Bertie yet.  A week ago, I developed a swelling under my chin, apparently its normal with NHL to spring lumps and bumps, that though has started to shrink this morning, so there is some progress. I am told to drink 5 pints of water a day to continue the flushing out of Bertie.  Thursday evening I drank 5 pints and another 5 pints on Friday, the only issue being that it wasn’t coming out, so I ended up walking round with this great sloshing stomach, Friday evening though, the tap finally opened.  I hope with all my heart that Bertie has now started his journey into oblivion.

For the first couple of days after chemo, I do feel pumped full of drugs, alternately light-headed then heavy-headed and a little wobbly on my feet plus some fatigue.  So that’s it as far as side effects go at the moment.  Today, Sunday, I feel like a spring chicken and am planning to get in the gym.  On reading further, days 7 through 14 of the 21 days cycle will be the worst, so something to look forward to on Thursday.  My hair is still intact, but I’ve started buying some fetching headwear in readiness.  I’ve bought complete new bedding, duvet, pillows etc and hoovered the bed so that I am sleeping in as clean an environment as possible.  The steroids I am on now are different to those at the beginning and it seems I can revert to eating normally again which Pat is thankful for as its been driving him mad watching me eat constantly.

Ironically, since I decided to try to semi-retire 4 years ago, I have been busier than ever with mainly charity clients and various voluntary roles.  The demands on my time being very high leaving me with not much time to do what I planned with all my supposed spare time.  Now following diagnosis, people are looking after me and those demands practically dried up overnight which has been extremely liberating. I will probably be somewhat limited in what I can do physically for a while, but now I will actually have time to devote to my Italian, Sax, Uke and reading and I’m really looking forward to that.

Now I probably won’t post another update until after the 19th September, so don’t fret at the lack of an update in between – I will let you know if anything happens!

Fri 25/08/17 – Pre-chemo meeting – 1 mth 4 days

NHS staff this week – 8, cumulative 114

After the tension lifting diagnosis on Monday, I decided that I was going to give myself a really good sleep by ‘celebrating’ and knocking myself out with a bottle of wine, that would surely do the trick.  Wrong! Alcohol had no effect whatsover, in fact I still felt sober and then managed only 1 1/2 hours sleep, so that plan has been ditched.

Plan B Tuesday evening – Glory, Glory, my first 7 hour sleep for weeks. Recipe – half a glass of wine with dinner, ‘sleep easy’ tea infusion during the evening, glass of milk and oatmeal cookie (thanks Fiona) before bed and sleeping tablet. There is no greater feeling than waking up with body and mind rested properly.  This has worked for the rest of the week consistently sleeping 6 1/2 hours, so ‘that’ll do pig, that’ll do’.

With a confirmed diagnosis and treatment plan the uncertainty and angst has disappeared and there are perceptible nuggets of normality returning to our lives. Since the Danes went home, we have had a week to ourselves to gather our thoughts, think and reflect and slowly begin to come to terms with what life has chosen to throw at us.

Has the miracle of Steroids extended further? At Uke Club on Monday evening having not picked up my Ukelele for a month, all of a sudden I could play it without looking at my fingers – which I’ve never been able to do – spooky.

I have completed two half days of client work this week, the first in a month. I have an endless stream of visitors which is lovely and keeps me out of mischief.  A gentle Pilates class this week also, first exercise in over a month.  A new phenomenon is that at the end of either a really relaxing hypno session or Pilates, in the final minutes of concentrating on breathing, my eyes and cheeks become wet and I imagine its Bertie taking pity and beginning to seep out.

Flippin’ ‘eck, I woke up Wednesday morning with another outbreak of shingles – kick me when I’m down!  Of course, its not so straightforward now.  I have an on-hand prescription for Aciclovir to clear it up because its recurred so much this year, but can I take it with steroids or so close to Chemotherapy?  I have to ring the hospital who put me through to Nicky’s voicemail.  She emails me within 5 minutes, to say go ahead and take the pills.  I love that she responds so quickly, it saves an awful lot of unneccessary anxiety – it must be part of her training, simple but effective.

I have my pre-chemo meeting with Nicky today and have prepared a full A4 page of questions to go through – hope she doesn’t roll her eyes too much at this.  Shingles is on the list as there seems to a clear link somewhere.

It’s quite hard to consume the volume of food I need to try and stop myself shrinking too much. Between Bertie, the shock, stress and upset and steroids, my metabolism is all over the place. I am eating nearly double what I normally eat and have decided that I need to throw in another meal as well as the other three meals plus continuous snacks.  Although as a weight loss programme, I really would not recommend this particular set of circumstances. I also notice on my Fitbit that my resting heart rate has dropped from its normal 64 bpm to 50-53 bpm. This is top notch fitness level, perhaps I am turning into an Olympic athlete just by eating vast quantities and sitting in a chair?

I’ve been told that my body will start doing unusual things now, but I should just go with the flow (surf the wave Mike) and accept it.  I am going to be permanently monitored by my medical team, so can rest easy in the knowledge that they will let me know if anything is untoward.

So, to the meeting today with Nicky.  She first gets a doctor to have a look at my shingles, they are both relatively unconcerned and prescribe some stuff for it.

My type of Lymphoma is apparently neither given a stage nor a grade, it just is.  It has been slow growing maybe for a few years, and this year has transformed into a faster more aggressive type. She stresses that they are taking a curative radical approach to my treatment as opposed to palliative treatment, so my prognosis is good.  I will have the 6 x 3 week cycles of Chemo starting next week in Darlington followed by 3 weeks of daily Radiotherapy at James Cook hospital, followed by 2 years worth of immunotherapy every 8 weeks, followed by very regular check ups – perhaps a decade worth of care.  After the Radiotherapy they expect me to recuperate for 6 months.  So Mike, book me in for that Paragliding next October.

I will be admitted to hospital next Thursday for two days for my first chemo session.  This is because they expect Bertie to start dispersing almost immediately and because there is so much of him, they need to ensure that he won’t clog up my kidneys.  I have another prescription for tablets today to begin preparing my kidneys.

As you would expect, there will be a whole host of potential side effects, all of which I have to contact the hospital immediately about.  I also have to buy a thermometer.

Nicky needs to check with the doctor about more steroids as I’ve just finished the course. She will call me later.  I’ve become rather attached to them so would like some more, particularly as Pat and I went out for a 2 course lunch afterwards, followed closely in the afternoon by a giant chocolate choux bun, and I’ve still got my tea to go!

On top of the medical treatment, I am being made appointments for a holistic assessment, massages, aromatherapy, a ‘look good’ clinic, a wig fitting (may as well take it), counselling for both Pat and I and a heart echo scan.  I have also been provided with a Macmillan ‘cancer cookbook’ – Marcia eat your heart out, that’s one you will never get, but for a small fee I can let you have a peek. Nicky also gives me a whole host of Macmillan literature, which actually is really helpful. As a side note, I also spend quite a lot of time on the Macmillan website, which is full of information, practical help and other people’s experiences.

After 3 cycles of chemo, I will have a CT scan to check progress.  At the end of the 6 cycles I will have another PET scan to check that Bertie is gone before Radiotherapy begins.  I will see Dr Mounter every Tuesday for review.

The sheer scale, scope and duration of project ‘look after and cure Tina’ is absolutely awesome, truly humbling and I think this ‘total care’ approach from the NHS must be without peer in the modern world.  It is entirely free. If we lived in the USA, I think we would go bankrupt.

One of the main things with cancer is that you must try and maintain your weight and not become malnourished so that your body has the best chance of fighting it.  So the dietary advice to me goes totally against the grain.  I must ensure that I consume enough fat and sugar to maintain energy.  So I am highly encouraged to add extra butter, cheese and cream to everything.  No diet stuff for me, make sure everything is full fat and eat fatty and sugary foods, bread, potatoes, croissants, biscuits, scones, cakes, ready made desserts, crisps, chocolate, shop bought ice cream etc – its gonna be tough!

The highest priority though is to avoid infections, because my immune system will be very suppressed.  So if you have a cough, cold, flu, diarrhoea or vomiting etc, please stay away from me or tell me to stay away.  I also have to avoid crowded places. Pat and I are also told to arrange to have a flu jab each.

Foods I must avoid include takeaways, so we are going to blow our entire Nepal fund on Michelin starred restaurants in the North by going away in the van for a few days each time, which also gives us a little break as I don’t think I’ll be up to much physically.

Other foods I must avoid are cooked smoked meats, salami etc, pate, smoked salmon, unpasteurised dairy, soft cheese (feta, Parmesan etc), blue cheese, live yogurt, homemade mayo and ice cream, raw eggs, unpeeled fruit, uncooked herbs and spices, houmous.

The logisitics of this treatment programme are going to be almost a full time job for me. Another silver lining – I am entitled to free hospital parking, I am so fortunate!

After returning home, Nicky calls and say there are more steroids prescribed for me so Pat has to return to the hospital again to get them.  I am beginning to rattle with pills.

So that’s all for now folks, have a good weekend, I’m off to eat a second giant chocolate choux bun!

 

Mon 21/08/17 – Diagnosis – Day 31

NHS staff 2, cumulative 106

I had an extremely relaxing and helpful session with Fiona my hypnotherapist this morning, helping to make the body and mind in as ship shape condition as it can be for the next stage.

I had had to email my Clinical Nurse Nicky last night to get permission to access hypnotherapy, such is the red tape for these things when you have cancer.  I also asked her for confirmation that I had been included on last Friday’s MDT meeting at the hospital and when I would be likely called in to discuss start of treatment, I can’t face waiting another week.  She had replied at 8 this morning – I do like efficient people.  She is in clinic this morning and will contact me this afternoon.

Now people get ready with a drum roll, Nicky has just called to update me with the histology of what Bertie is i.e. results of all the scans, biopsies and blood tests.

I have Follicular Non-Hodgkins Lymphoma –   I think it has been slow growing (since 2013 I deduce looking at when I first got shingles) and may have transformed this year to faster growing – I need to ask further questions to determine this exactly, and  I forgot to ask what stage and grade it is, so will find out.  I am meeting Nicky this Friday to run through all the detail and admin and will start my R-CHOP (initials of drugs used) chemotherapy a week Thursday (31st August).  1 cycle of R-Chop is once every 3 weeks.  I will have 6 cycles, so 18 weeks in total, taking me into January next year.   So no skiing for us this season, the first time we’ll have missed it for 30 years.

During the first few cycles I will have another CT Scan to make sure that treatment is working.  At the end of the R-Chop cycles I will have a course of Radiotherapy as well to make sure Bertie is gone.  After that I will have Maintenance Rituximab treatment (antibody) every 8 weeks for 2 years, then regular monitoring and checks, probably for the rest of my life – which is currently looking a lot longer than I originally anticipated.

Now I don’t know about you but I think 41 days from first urgent GP referral to start of chemotherapy is pretty fantastic – well done NHS, I am grateful for the speed even though it has felt like an eternity.

As to the side effects of the chemo, we’ll have to wait and see. I don’t think chemo is as toxic as it used to be but can still be pretty nasty so I might need a bit of practical help over the next few months.  Its pretty certain that I’m going to lose my hair, so I’ll be looking to my more stylish friends to come up with some alternatives for me, I don’t think I’m a wig kind of girl.

Do you remember I said I had self diagnosed myself?  Well, I was completely wrong on all counts so will definitely be sticking to the day job of no job at all.

I am almost feeling up beat about it all now that we can get started on banishing Bertie and know what we are dealing with.  The upside of the steroids at the moment is that I need to eat like a horse, which is not something I’m used to doing, but I’m really looking forward to Bertie gradually shrinking, becoming Bert, then B, then nothing and being a normal size again. All in all the misery of certainty is much more preferable to the uncertainty.

Keep me in your thoughts peeps!

 

Fri 18/08/17 – This is my cancer, No-one else’s – Day 28

NHS staff  2, cumulative 104

Sorry to bore you with an update before the week was up, but I know you’ve missed me.

After the most horrific 3 1/2 weeks of our lives, in limbo adrift at sea being buffeted by the winds of life with no control over direction, this week both Pat & I are emerging from our bubble of shock.  We have now had time to come to terms with the initial shock and disbelief and are slowly turning that into positive proactive action rather than just passively accepting.  We are taking back control.

My traumatic biopsy ordeal with its complications sure took its toll on me.  Its taken over a week to get over the slicing and dicing and I have been able to do virtually nothing since then.  Its just about healed now I think, so I can think about swimming again.

We have been inundated with messages of love and support which we will never forget, it’s really helped us through these dark days.  Acts of kindness and compassion have abounded. Because I couldn’t prepare properly for the Dane’s visit, people dropped random food parcels off – a cooked ham and my particular favourite – ‘A British Pig for the Danes!’.  We have a huge supportive network of family, friends and medical staff who will help us through this.  We can’t thank everyone enough.

This is day 7 of taking steroids.  My face has not yet become bloated like I have seen in other people.  The worst side effect is that I can only get 3 to 4 hours sleep at night which is pretty exhausting.  The main effect though is that they have made Bertie retreat from the brink of eruption. I was fit to burst and I think they have for now stopped it in its tracks.  I’m taking daily measurements of abdomen and belly, to see if there is a measurable reduction (not yet) and I’ve also taken photos and may decide at a later point to post before and after shots, but maybe I won’t subject you to that.  The downside of steroids is that they can do nasty things to your stomach, so as well as taking the protective pill, I’ve also had to change my bad habit of skipping breakfast.  So now lots of goodness for breakfast to line my stomach, fibre, fruit, yogurt, nuts and chia seeds which are flippin’ expensive, but I’m worth it.

Nicky – who I like to think of as my own private clinical nurse, but who in reality probably looks after dozens of patients has made an appointment for me with the Complimentary Therapy team at Ward 42.  This is to focus on really looking after myself internally such as taking lots of green tea and ginger, goji berries etc.  I’ve already ditched the caffine for ginger tea, cut down on gluten and dairy and alcohol (not all!). Now to help me on my way with this, an enormous hamper of complimentary therapy goods arrived today courtesy of Dr Liz, thank you so much.

I’ve made an appointment with Fiona, the hypnotherapist to explore how best to look after my mind, I think being in as best a mental state as I can be can only help.

Dr Liz had picked up on something I wrote about my shingles at the end of my hospital stay.  As a GP, she had seen patients with recurring shingles which more often than not ended up being an indicator of some form of cancer.

Now reading further, I should point out that shingles does not cause cancer and cancer does not cause shingles. The chicken pox varicella vosta virus causes shingles. Having a cancer lowers or suppresses your immune system thereby creating an environment for the virus to reactivate. My personal network of doctors will of course correct me if I’ve stated that incorrectly.

Now with hindsight, my frequent shingles this year should have set alarm bells ringing with me – but ordinarily, why would it?

I had booked a double appointment (rather than knocking on her door over the road from us – unfair I thought) with Dr Alison for this week to discuss the shingles issue and also the AKI mentioned on my hospital discharge form. Acute Kidney Injury suspected but not found, christ, when were they going to mention that!  There is a lot to get through at this appointment.  I had ordered some travel vaccines for our trip to Nepal in October which we have now had to cancel.  I need Dr Alison to complete the insurance forms for me. We have also had to cancel our holiday to Germany leaving tomorrow.  I need to carry around a card so that in the event of being knocked down by a bus, medical staff know to continue my steroids.  She also prescribes some sleeping tablets so I can get a good night’s rest – really looking forward to that.  Every cloud has a silver lining – as a cancer patient I am entitled to free prescriptions, so there is also a form for that.  I mention that the NHS waiting times to start treatment are 62 days from the initial urgent GP referral, which is 34 days away.  She is fairly confident that I won’t have to wait that long – I actually cannot wait to get started.

My now extensive reading on Lymphoma has meant I’ve self diagnosed the specific type, stage and grade of lymphoma together with accompanying letters that I have, which I’ll keep to myself for the moment. – sorry nephew Phil, I know you will roll your eyes in frustration at that, but it’s human nature. I will of course wait until the doctors tell me what it is before retraining as a doctor.

I know people want to help in whatever way they can, but could I please ask you not to regale myself and Pat of tales of your workmate’s sister’s cancer.  It really isn’t helpful at all and can be distressing.  Each person’s cancer is as different and as individual to them as their fingerprints.  Each individual cancer possesses different biological characteristics, even cancers of the same type. No-one has exactly the same symptoms and everyone’s treatment is specifically targeted and formulated for them.  You cannot compare cancers. I am a statistic of 1.

This is my cancer, my journey and my fight – which I will win by the way.  As Isabel said, Bertie is bloody brave taking on Tina Murray – quite right!  I am regaining my Lion instinct, which I thought you’d all be pleased about.

On a happier note, it is our 24th Wedding Anniversary on Monday and as a treat we are going tonight to the Michelin starred Star Inn in Harrome for a slap up meal.  Can I just point out and appreciate that my husband Pat is an absolute superstar, whatever I need or want before I even know it, he has already done it, a 100% there for me at all times – my soul mate, enduring this terrible journey with me every step of the way,  I’m looking forward to our 25th next year.

By the way, we are being open about this now, my condition is not a secret and neither is this blog.

 

Wed 9,10,11/08/17 – Traumatic biopsy – Day 19 | 20 | 21

NHS Staff 65, cumulative 102

Just to clarify, if I see the same nurse more than once a day, he/she only counts as 1 for the staff stats. Family and friends working for the NHS do not count for this purpose either.

After a few days radio silence with no Wi-Fi, I’m back in the game. A few of you have been agitated at the lack of a blog update, it’s a bit like London buses, nothing then 3 at once. I’ve been in hospital for 3 days.

Well, I just popped to the hospital this morning (Wed) for the biopsy, then planned to go out for dinner with hubby. The following day was going to be spring cleaning, making beds up and food shopping for visiting Vikings.

Only I could turn this routine operation into an episode of ‘Casualty’. I was going to say ‘ER’, then I could imagine George coming to serve me coffee, but I remembered Americans only speak in acronyms, not complete sentences, so I’m sticking with good old British Charlie Fairhead.

When I arrived at the nurse’s station on ward 42, they knew nothing about me, did I have an appointment card? Of course not, I was only phoned a couple of days ago, then I heard one of them say that Dr Mounter was on holiday. I was inwardly distraught, did this mean that the biopsy wasn’t actually booked in and I was going to have to wait another couple of weeks for any progress? Dr Mounter is currently my only lifeline to survival, and that seemed to be slipping through my fingers. I struggled to hold back tears and regretted telling Pat he didn’t need to accompany me all day.

But the cavalry arrived at 9.30 in the form of Ward Sister Maureen who knew all about me. This next bit is so weird – I was deposited on a bed in in the Rosin Unit, the chemo unit – surely this should be an outpatient thing? I had several blood samples taken, a cannula inserted and was told the op was booked for 11 and a porter would come for me at 10.30 – great, let’s get on with it. I also had some MRSA swabs done. No sooner than the nurse asked she had a swab stuck up each nostril like Rowan Atkinson in ‘Black Adder’ trying to avoid going over the top.

I fell asleep and was woken at 11.30 still in the same place by a nurse. She said apparently the first blood samples had clotted too much to be tested, so we had to do it again, which meant a delay in the op and she couldn’t tell me when it would be.

My now fragile mind is working overtime.  As far as I’m concerned, the biopsy is the most critical piece of the puzzle and will determine what my fate will be, whether I will live or die.   The possibility that it might be postponed is too distressing to contemplate. Also if Dr Mounter is away, even if I have the biopsy today, will that delay results? This just adds to my distress. I am feeling like a faceless patient today, frustrated at having no idea who I can ask these questions of or talk about with. It is misery. I am lying there silently weeping, sharing the whole unit with various people undertaking their chemo. It’s a cheery place.

Finally, about 2, I am taken down to Radiology for the op. The Radiologist, Dr A, is cocky and very sure of himself, and very unsympathetic to my level of distress. I immediately dislike him. 2 nurses are also there. I have a local anesthetic and he performed an ultrasound to mark out on my abdomen the safest way in, i.e. through as few structures as possible. He chose a spot in line with my belly button. He made a nick in the skin and went in with a rather large needle almost the size of a cooking thermometer, guided still by ultrasound, and I swear to God what felt like the jaws of a JCB took a bit of me, if I wasn’t so surprised, I could have clocked him one. They check all my vitals.

I am wheeled outside of that room and the nurses are again checking my vitals. All of a sudden I can’t breathe properly, my abdomen appears to go into shock and starts bouncing around like a beach ball, the rest of me joins in involuntarily. Ooh dear, it is all hands on deck from medical staff and I’m wheeled right back in to the scan room – that’s wiped the smile off his cocky face. They use the ultrasound to check for internal bleeding and constantly check my vitals which are normal. This was not how it was supposed to be, it was supposed to be routine. “You’re only supposed to blow the bloody doors off” springs to mind. They decide to rush me back to the ward for immediate pain relief and more tests. We have to charge through quite a few members of the public and up in the lifts to get there which must have been distressing for some to see me shaking so much and crying with pain. After bursting into the chemo unit It takes 6 nurses and the porter to get me from the X-ray bed to the ward bed because I am in excrutiating pain and unable to move.  The chemo unit does not usually see this sort of action and it is probably a welcome distraction from the boredom of hours sitting there receiving chemo. One of the nurses tells me they don’t usually have biopsy patients in the Rosin unit. Once again I am special. I am in severe shock for about 30 minutes and am given morphine and a drip for hydration and after a while relief kicks in. I am monitored every half an hour (this is routine) for 4 hours (til 7.00pm). Dr A is now elevated to a doctor I never want to see again.

It is very evident that if I so much as move a muscle, excruciating pain kicks in. It feels like my abdomen has had a 2 foot slice cut it in, it hasn’t, it is just a little hole with a teeny chunk of insides missing.  When the 4 hours are up, a nurse says to see if I can get off the bed and walk. It is too painful to even move a leg. She is not happy and goes off to find a doctor. He eventually comes and examines me. He is now not happy and goes off to find someone more senior. He eventually returned having spoken to someone more senior – I have no idea who and tells me I can’t go home and have to be admitted to the acute ward for observation. Oh pants.

About 11 at night, they wheel me down to the acute ward, where an impressive number of staff await me and get stuck into the task of getting me from the trolley to the bed, easily accomplished using a slide board, phew.  Sleep now til about 11 the next morning interrupted only by various nurses dispensing pills, drinks, breakfast, tests etc and patient comings and goings.  3 doctors come to look at me separately and eventually tell me I am being placed back under the care of a Haematologist, thank goodness there is another one besides Dr Mounter, phew. The pain has lessened for me now and I am able to struggle upright and take myself to the bathroom and get spruced up, then back to sleep.

I have a fantastic bed, with various buttons that automatically get me into any position I want, a great help when you need to sit up but can’t move. I think I rather tee off the rest of the ward by constantly adjusting it, Monty Pythonesque.

It is disconcerting to see a poor elderly lady in the bed opposite me continually fighting with nurses to get out, and who are trying to keep her covered up. She insists on kicking off all her bed clothes and lying legs akimbo, incontinence pad and all in my direct line of sight. She is called Kristina, is Belgian and prone to shouting out random things in Flemish. She shouts at me that she wanted her hair combed. I ask the next nurse in to comb her hair and she fetched a comb and put it on Kristina’s table where of course she can’t reach it. No nurses for a while and Kristina decides to make another bid for freedom. The 3 other ladies in the ward, as one all turn to me, it’s clear, the silent instructions in their eyes are that it has been delegated to me to calm her. So I haul myself out of bed, hobble over, put her legs back in bed and cover her over and also give her hair a good comb. She settles. I wonder if now I am eligible to be Jodie Whitaker’s assistant – in her current role as phony doctor, not Dr Who.

I am endlessly entertained in this ward. Ethel who has dementia also keeps trying to escape to look for her children, she is returned to the ward over and over by a parade of medical staff who have found her wandering.

I have some lunch, my first food and fluid for 42 hours, starter, main and ice cream. When the lady serving walks round with ginger pudding asking who ordered it, I ate that as well, I was ravenous.

I am woken sometime in the afternoon by Dr Mahmoud , the other Haematologist and Nicky, my new best friend. She is to be my key nurse over the coming months, years? I like her and him. She gives me her phone number, bleep number and email address – we’re obviously going to be having lots of conversations, I muse. As Dr Mounter is away, Dr Mahmoud will take over until his return. I am reassured finally that someone appropriate will have oversight of me. He says the biopsy results might be available end of next week, after which, my specific treatment can begin. After backtracking over my history, he says I can start on steroids immediately which should give relief to my symptoms of distension and might even kill some of the little b@#*+#@d mutant cells, because I say they have been getting worse in the last 4 weeks. The downside is that I will have to be moved back to ward 42 and stay there overnight so they can monitor the effects of the steroids. Dr Mahmoud and Nicky will see me tomorrow they say. Another nurse comes and gives me an injection of something to prevent blood clots as I’ve been lying down a lot of late without moving. She started heading for my stomach with the needle and I was immediately reminded of the horror of my biopsy and dastardly Dr A. She could see I was about to put her in a headlock and sensibly asked if she should try my leg instead. She also gives me my first steroids, 5 tiny little innocuous pills, immediately preceded by something to protect my stomach from the effects of them.

I’m taken back up to the ward at 8.30pm not to the Rosin Unit, but a private room, that’s some sort of positive result. Simon, a nurse who had been with me yesterday, welcomes me back like a long lost sister to my new second home. Late at night while off to the bathroom, I feel short changed because I realise most of the other rooms had en-suite.

I asked Simon if I’m allowed to use the plugs in the equipment strip above my bed to plug in my phone charger – it’s not a prison he says and comes in to set it all up for me. I have phone signal but no Wi-Fi.

Back in normal life it’s all go, the Vikings are coming remember! And I’m hosting a Bbq Saturday. Family steps in, Carmel, Pat’s sister aka Molly Maid, has cleaned my house from top to toe in preparation, bless her and between her and Pat, beds are made up. The rest of the family will help and I’m hoping the Danes will step in and help with getting the food in. I clearly cannot shop yet and Pat can’t be trusted on his own, there is a weeks’ worth to plan and shop for.

I feel well enough finally to get a draft of this blog together. I realise the pulsating in my tum has lessened a bit after many weeks. Those steroids sure work fast and I am immensely buoyed by this. No side effects yet.

I feel like I’m really in the system now taking the first steps on the rocky road to recovery hopefully. It will be an awful, ugly but necessary road to go down, but I intend to come out the other side. It has been an agonising, frustrating process to go through to get to this point, but I’ve got there.

Dr Mahmoud warned me that the steroids would make me excited, I think he means over active a bit like having caffeine too late, he’s right, its lights out and I’m wide awake.

I awake Friday about 5. I am constantly monitored and someone comes to take my lunch order, obviously I’m not going home just yet.  More pain relief and steroids, no side effects yet.

A nurse comes to see if I want a wash, I have been lying down for nearly 3 days getting hot and sweaty. I’m blowed if I am going to have a bed bath, so take myself off to the shower. I can sit up now without using the bed for assistance.

Lunch comes and goes.

Yet another doctor, under Dr Mahmoud comes to examine me and I have to run through the whole history again. He is smiling, what’s funny I ask, what Profession are you he asks,  Accountant I say. He laughs and says he thought I was someone medical as I was so knowledgeable. How can I not be? This is my life we are talking about and I’m going to read every morsel I can find on cause, diagnosis and treatment. I am going to take Nick Nolte’s approach in ‘Lorenzo’s Oil’. He is intently staring at my neck, a raised vein maybe and wants Dr Mahmoud to take a look. He also checks my legs for deep vein thrombosis – none.

Someone comes and takes my order for dinner, oh pants. I tell her that I don’t think I’ll be here – it’s just in case she says.

I give the nurses a bit of a fright, they find me hanging off the bed with my head jammed in the railings, I think they think I’m dead, I’ve just suddenly fallen sound asleep and if you speak to Pat, he’ll tell you that’s a normal sleeping position for me.

I nipped to the bathroom and there are some antiseptic wipes to use to wipe the seat before and after to help not spread infection.  I decide that if they are good enough for that, they are good enough for me personally.  Now if you watch ‘Mrs Brown’s Boys’ you will be familiar with the Brazilian Wax scene, so have no difficulty imagining me hopping round the bathroom, silently screaming and feckin’ as the pain kicks in.  The nurses had a good laugh at my expense and went to great pains to point out that the wet wipes for me were totally different to the wet wipes for the toilet!

Eventually Dr Mahmoud and Nicky came to see me.  I can go home – hooray.  He started to say that hopefully I can be added to next Friday’s Multi-Disciplinary Team Meeting, then changed his mind and said he will add me, as my biopsy results are likely to be rushed through because Bertie is big, about the size of a rugby ball.  He will be able to get sight of them somehow. Treatment can start almost immediately after that.  He explained that because Bertie is greater than 10cm it is classed as bulky but can still be treated with Chemo until it is gone (music to my ears), then I will probably also have Radiotherapy just to make sure.  He did stress that they still need to determine exactly what type it is, as that dictates the specific treatment.  He does this day in day out, so I trust in him that he is not pulling the wool over my eyes about getting rid of Bertie.

His junior doctor pops back to see me, because a rash/discolouration has been discovered on my legs and he wanted to know if I was taking any meds for a chronic condition.  I am not, but mentioned that for a few years now, I suddenly started having shingles about once a year.  This year I have had them 3 times already.  He said my immune system has changed and is likely to have caused it.  I am hoping that I can also say goodbye to shingles.  Bizarrely he also tells me I’m a smart cookie, I know I tell him!

So I am dispatched in a wheelchair with 2 week’s worth of Steroids.  Nicky will call me as soon as possible to get me in for the next phase.

As that will not be until at least after next Friday, You probably won’t hear from me until then.

I am receiving all your messages and appreciate them very much, and will try and respond over the next few days.  We have the Danes here for 1 week then will be home alone.

Last but not least, Pat picked me up and I arrived home about 5 much to the Danes delight as although Pat provided them with some food, it was described as ‘not 5 star’!

So, over and out for at least 1 week peeps.

 

Tue 08/08/17 – Musings – Day 18

On pants! Bernadette’s imaginings are coming true.  Today I was walking from the car park to my office at Lord Crewe’s Charity, a regular client of mine and realised something was amiss, my trousers were heading south – I really must pay attention to doing up my trousers when getting out of the car.

Not much else happening today so I have a few musings to keep you entertained:

Most of you know I am half Danish and all my family on my mother’s side live in Denmark.  Many, many years ago, my cousin Thomas came for a visit from Denmark.  He caused havoc in Neasham and is fondly remembered still in the Fox and Hounds, famously convincing the then landlord to drive him to Macdonalds at closing time, because he had the beery munchies.  His dad, his brother Rasmus and his partner Sikita are coming to stay for a week this Friday.  I have been told by some in the village to forewarn Neasham in the event of such a visit – so be warned Neasham, the Vikings are coming!

Yesterday, late afternoon I went to Sainsburys to stock up – mainly on alcohol in preparation for the Vikings – it was all heavy stuff.  As I started to load up the car, one of the car wash guys came trotting over and proceeded to do it for me.  Holy Cow, he genuinely thinks I’m pregnant.  At first I’m miffed, but then slowly realise I should be flattered he think’s I’m young enough to be pregnant.

This impending visit made me realise I needed to let my family in Denmark know of my situation, as the Danes visiting would surely get to know.  How to tell my mum? The best option is face to face, but not practical and in any case she would then be left alone and upset.  I decided to enlist the help of my cousin Kim and his wife Dr Solveig.  They travelled to her village to break the news and I phoned while they were there. Dr Solveig was able to provide facts and reassurance to her.  They both also told the rest of the family for me, a unenviable task and I’m grateful to them both.  A whole load of flowers arrived yesterday from Denmark, I was touched as I know they all want to support me but are geographically challenged.  They are all closely following this blog.

I also called and told my brother Alistair who now lives on Alderney with his wife Dr Sally.

My cup runneth over with doctors both in the family and as friends.

I can tell which countries my blog is being viewed from, but not who.  The last couple of days, there have been views from the USA.  This leads me to fantasise that I am being monitored by the FBI because of my references to munitions………but it’s probably just some random person.

I work very little these days because I don’t have to.  I am very picky about which offers of work I say yes to, it has to interest me.  I have a new client that I was very much looking forward to working with, a charity that works with vulnerable youngsters.  I was due to go for the first day’s work tomorrow but now it clashes with the biopsy.  I’ve had to speedily pass the contract on to another accountant as I don’t know how quickly or for how long I’ll get sick during treatment and it would be unfair to mess them around.  As I’m sorting this out, it still hasn’t sunk in that this is me we’re talking about, its surreal and still like a dream.

It must be extraordinarily harrowing and stressful if you are in my situation trying to hold down a full time job – I’m not sure I could do it.

Warning – cheesy para coming up…….

I just want to say to everyone that life is not a rehearsal, your dreams can get snatched away in a instant.  So don’t stay in that job you hate, don’t put off doing what you want to do or going where you have always dreamed of, don’t hesitate to live life and cherish those who love and care about you.  Obviously if someone doesn’t care about you, dump them immediately.

Mon 07/08/17 – Biopsy appointment attempt – Day 17

NHS staff 3, cumulative 37

I am learning to be a pushy patient and it has paid off.  After hearing nothing today from the hospital by 2.30 pm I could stand the suspense no longer and phoned ward 42 to try and get to speak with Dr Mounter.  He was with a patient and I was asked to phone back in 1 hour.

5 minutes later, the x-ray department phoned me with an appointment on Wednesday for my biopsy – progress.

I have to report at 8:30 am on Wednesday for more blood tests with the biopsy taking place at about 11.  I then have to stay in the ward for observation for 4 – 6 hours and have to bring an overnight bag just in case.  Pizza for tea I think.

This is one step closer to learning what my fate is and when I know that, only then can the fight begin.

Fri 04/08/17 – PET scan results – Day 14

NHS staff – 2, cumulative 34.

I am still waiting for a biopsy date which I had expected to receive last week, it is agonising waiting, I just want to get on with it.

On Wednesday I had phoned the GP surgery to see if they could see a date on the system, because an appointment might have been made with the notification en-route to me. The receptionist said that they wouldn’t be able to see a date and gave me the number of Dr Mounter’s (Haematology consultant) secretary at the hospital.  I rang her and asked if a date had been made and she said it would be the Radiology dept that could tell me and gave me the number.  I ran out of time that day to follow it up.

I have been contemplating how to follow this up, because as well as the biopsy date I also want the results of the PET Scan.  I wasn’t sure if I got the results before the biopsy or whether I would receive them together with the biopsy results.  Neither Pat nor I could remember what we had been told.  We do remember that Dr Mounter had said if we had any questions or concerns at any time to just ring the ward.

I decided that I hadn’t asked the right question of the secretary and I needed to badger the hospital for some answers.

So today (Friday), I rang the ward rather than the secretary and asked how I could get my PET Scan results or if I needed to wait until I had the biopsy and when that might be.  She said I needed to speak to Dr Mounter, but he was out on rotation (hoola-hooping?), whatever that meant, and she would leave a message for him.

Actually he called back within half an hour and the first thing was him asking how my symptoms were.  They feel worse, but I don’t know if that’s because I’m more aware of them.  He apologised for the biopsy delay, there had been some staff holidays and the Radiologist I needed was back Monday and he would chase it up urgently, because everything depends on the biopsy.  He had not yet received the scan results and would go off now to find them and call me back.

He called back in half an hour and had located the results.  The scan showed a 15cm x 9cm mass wrapped around – not in – my mesentery (a new word for us and the current subject of much googling, sorry Phil) which was very active – Santa’s elves at Christmas popped into my head.  In addition there were a couple of other glands in my abdomen and lower neck with much less activity – elves on vacation.  He said the high activity can be good as it means its more susceptible to treatment.  He said he would call me on Monday to let me know what was happening with the biopsy.  My bones, bone marrow, lungs and liver are ok.

The size is similar to that shown by the CT scan, 17 x 8.  It is big, but no indicator of severity apparently.

Up and until now, Bertie has been a bit abstract, a very hazy image but now he is beginning to crystallise and the image starting to come into focus.

Up to now, I have been scared and upset, but strangely calm, a touch weepy here and there, but mostly calm, as has Pat.  This though hits me like a bolt of lightning and I had a complete meltdown, walking round the house wailing and sobbing like a baby, gut wrenching – I never knew I could cry like that.  Pat’s reaction is to cut the grass on the steep bank out front doing an impersonation of Malcolm Tucker from the ‘Thick of it’, swearing and cussing incessantly.

He joins in with me when he comes in, and we have a complete pity party and just don’t know what to do with ourselves, it’s truly awful.

I needed to speak with someone medical and rang the surgery hoping to be able to get in to see Dr Alison that evening – at 4.40 pm on a Friday, I was chasing rainbows.  The receptionist said she would tell her I called.  Dr Alison called me at 5.15 and we had a chat about it.  Its normal with Lymphoma for there to be a couple of other sites in addition to the main one, and the additional information I told her made no difference to what we had discussed last week, it’s all as she expected with nothing really new to worry about.  She was very reassuring yet again.

We also had a long chat with Phil (nephew Phil, can’t call him Dr Phil as it will get confused with Dr Phil Mounter), consultant Radiologist who was able to go into fine detail and the nth degree about my results which was what we needed. He echoed Dr Alison in that nothing we had told him gave him any more reason to be alarmed.

I think both Pat and I had needed to have that melt down as it provided some sort of release of emotion – and I think we are allowed one. Discussing it all with nephew Phil and his wife Dr Liz has been very helpful and we feel calmed again.  We are very grateful to them both.

I reflect on how fortunate I am to have a GP who is so sensitive to my needs and to have a family Radiologist who can put everything into context and give us full information in minute detail.  I don’t think that everyone in my situation has that luxury.

Pat says that from tomorrow, we are going to concentrate on getting me fit and healthy ready to face the chemo.

Wed 02/08/17 – Trip to Lincoln – Day 11

On the 2 1/2 hour drive down to Lincoln yesterday, I realised just how uncomfortable Bertie was making me.   I can feel little, stabbing, throbbing pains in my armpits and groins, tho’ I’m not sure if it’s psychosomatic. Whatever it is it is making me scared.

For a while now I have been unable to do up any of my trousers as its just too uncomfortable.  Sitting in a dining chair or armchair is too uncomfortable, to the point I can’t breathe regularly. My best position where I get maximum relief is standing up and letting it all hang out with my hands linked cradling Bertie, or sit propped up, legs supported in a birthing position – I know, don’t think about it. It’s just the pressure Bertie is exerting is becoming increasingly significant, and has accelerated over the past 2 or 3 weeks. So in the car, I drove with trousers undone and with my breathing being restricted.  I am becoming rather adept at being able to get out of the car and button up my trousers in one smooth movement, thereby avoiding standing up and my trousers falling down.

Understandably,  I have not focused on doing any exercise lately. I can’t cycle anymore because the hunched position squashes Bertie.  I cannot run because my abdomen bounces up and down and I believe that I might somehow dislodge him, like a blood clot – that’s probably not even possible. When I get home, I am going to get in the pool, maybe floating will give me some relief.

They (an all encompassing word for the team looking after me) are going to have to do something soon before my abdomen distends to such a point that it can’t stretch any further without bursting and before it stops me breathing entirely. I feel like they need to cut it out.

I would like to point out that I am not in any pain, just a state of extreme uncomfortableness.

The Haematologist had mentioned that they might put me on steroids to relieve the symptoms – does that mean I’ll suddenly be able to challenge Bolt?  I have no idea, perhaps I should have asked. I cannot have steroids before the biopsy however because it would distort the results.

Oh the irony, yesterday I received an automated text from the GP surgery offering me a free health check – I will ponder this further.

Today, I drove my dad the few miles to Bransbury Horse Sanctuary to see the ‘in memoriam plaque’ for his late wife, he didn’t notice the unfastening and fastening of trousers. As we walked around the network of paths there, I came across this:

Am I or Bertie to be put out to pasture?

Now we’re off to look at vintage buses……deep joy!

Mike has just sent me a delightful image from ‘Alien’, but which is a pretty good depiction of what it feels like to be me at the moment.

Sorry if that’s put you off your dinner. If it’s too offensive, let me know and I’ll delete it.

 

 

 

Tue 01/08/17 – Bertie’s email address – Day 10

Today I finished getting this blog up to date and needed to test that the email following option was working correctly for my friends and family before I published it.

So I created an email address for Bertie so he could sign up for updates – funny eh!  It worked, but please let me know if you experience any difficulties.

Now I have downloaded my brain I feel a definite release of tension and mentally now beginning to ready myself for the coming battle with Bertie.

Sun 30/07/17 – Post wedding blues – Day 9

Not much to say today apart from the fact that I was enjoying seeing the avalanche of wedding photos on Facebook when one in particular caught my attention:

Some drunken guest had posted on Facebook at about 1 in the morning that ‘if you weren’t at the wedding, you didn’t matter’.  I know that this is not aimed at me personally but it hits me like a sledgehammer and I become weepy.  I am irrationally very upset and very offended. I replied ‘how unkind’.

As if I don’t feel heartbroken enough at missing the wedding.

5 minutes later though, I’m a changed woman and decide to tell him what a crass, insensitive twat he is. His throwaway comment is the language of school bullies and I’m not going to stand for it.  But I can’t find it again, it has been deleted, someone in the family must have told him to take it down and I silently thank them.  Its probably best for him and me that its been deleted.

I can’t help imagining that my absence from a family event is some sort of omen, and in my mind’s eye, I am floating above them listening to them talk about me in the past tense.

 

Sat 29/07/17 – First PET scan – Day 8

NHS staff – 3, cumulative 32

Today is the big day, Helen and Lewis’s wedding.  Pat managed to arrive 1 minute before the start and concocted a story that I had vomiting and diarrhoea and so couldn’t come.  I don’t know if everyone thought that strange because normally nothing stops me.

For 24 hours before the scan I have been told to be inactive.  I cannot eat anything 6 hours before the scan but have to drink pints of plain water, which means weeing a lot too!  I had poached eggs at 9:30 am followed by a long bath (my 2nd this year!) and felt like a condemned woman having her last meal preparing for the gallows.

Isabel picked me up and we arrived at James Cook hospital with plenty of time to spare.  The PET Scanner is a mobile unit that travels up and down the country to only about 10 to 12 hospitals in total.  Again I am geographically lucky.

The nurse came for me and I’m shown to a little cubicle. The necessary tracer chemicals are injected into me through a cannula and I then have to lie still for an hour for it to be absorbed into my body.

I am then shown into the next room where the enormous scanner is.  On the bed, a cushion is place under my knees and my feet wrapped in a blanket to hold them in place.  My arms are clamped above my head and I’m told it will take 40 minutes.  The bed then slides in and out repeatedly so the scanner can do its job.  When its finished the nurse said to bring my arms down, I couldn’t they were locked, its a bit of a stress position.

They said the results would be available in 3 working days.  I am unsure if I have to go anywhere to get the results or if I wait for the consultant to contact me – I will follow up.

Isabel took me home and I got in just after 6.30pm.  Normally I would relish an evening to myself, but as time goes on, I reflect on the fact that the entire family are enjoying the wedding and I am not.  I’m feeling miserable, but half an hour later, my friends Adrian and Catherine text to see if we wanted to go for a drink – they do know about Bertie.  I explain that Pat is at the wedding and that I’m radioactive so probably not.  He is a retired GP and she is a bio chemist and they said they were willing to take their chances with me, even if it meant no snogging, and they picked me up for a drink.  I was very grateful for their company.

 

Fri 28/07/17 – Musings – Day 7

NHS staff -1, cumulative 32.

I was in a contemplative mood today.  I came to the conclusion that fate has intervened somewhat in my life.  I am somewhat cynical and sceptical when it comes to holistics, but the success with my fear of heights has softened me somewhat.

If I hadn’t gone to see Fiona the Hypnotherapist, without her prompting I would not have gone to see the GP until probably many months later.  I had emailed Fiona to tell her that and a few emails back and forth ensued.

Unbelievably, she has offered me a complimentary session to explore ways that can help me to remain focused and positive rather than sink into depression.  I am touched and grateful and will definitely take her up on that.

I postponed making an appointment there and then because I am waiting for a biopsy date.  Also she sees appointments on a Wednesday and the following Wednesday I am supposed to be having a 2 night trip to meet up with my dad in Lincoln.

I agonised about whether to cancel my trip with my dad as its likely to clash with the biopsy date.  I am only recently reconciled with my dad after 45 years so you can imagine what a decision that was.  I decided not to cancel as I would probably be given more than a few hours notice for a biopsy and its only a couple of hours drive away.  I am not going to tell him yet until I get a confirmed diagnosis, its only been a few months since his wife died and I am afraid of what the news might do to him.

Around 5, Dr Alison called me up from the surgery, a 20 minute chat offering support and facts and telling me to knock on her door if need be.  She reassured me that Bertie was very treatable. Don’t worry, you’ll have chemo, it will shrink and that will be that. I am relieved she has called me, she didn’t need to do that.  another example of the fantastic care I am receiving.

Thu 27/07/17 – Wedding angst – Day 6

NHS staff – 1, cumulative 28

Isabel texted me first thing to say she was going out on her bike and could pop over. We have been in constant contact since Friday as this saga has unfolded. I said not to worry because I knew Christine was coming over for a spot of gardening, Lesley was popping in and Catherine my sister-in-law was coming over in the afternoon. Isabel said she could still come, and I said I’ll save her for when no-one else is coming, she said are you sure?

It dawned on me then that she was also upset and in shock and needed to talk too, so I said come on over.  It helps us both.

I then got a phone call from Christine, who was no longer coming over as she had received a call to say her husband had fallen off a ladder in South Tyneside and was waiting for an ambulance.  Would I mind therefore going to get their dog Rolo (who loves me) and looking after him while she went up there.  Of course I didn’t mind but I was already recoiling from the thought of having to pick up dog poo and decided that I just cannot deal with the poo.

I went to pick up Rolo and we crossed the road to the village green where I was aghast that he immediately had a poo.  I had no bags and anyway I just simply couldn’t force myself to do it.  I made a mental note of the location of said poo and would get Christine to pick it up later.  I wondered how I would deal with someone reporting the fact that Parish Councillor Murray had let a dog foul. I decided that was the least of my worries.

In the afternoon the PET Scan people called. I could have an appointment this Saturday at 4:00 pm or the following Thursday.  Oh no what a cruel choice I had to make.  Saturday is a big family wedding, our niece Helen who is Pat’s brother’s daughter is getting married to Lewis and the whole family have been getting excited for months.  I want to go the wedding obviously and discuss with the girl on the phone if I could get to the church part and then rush to James Cook for the scan.  Its too tight, then I thought about going to the evening reception after the scan, maybe arriving about 8:00 pm.  She said that I would be slightly radioactive and could have no contact with pregnant ladies or small children and definitely no hugging. I briefly consider taking the Thursday slot but decide I cannot play roulette with my life and so booked the Saturday appointment.

Pat and I decided that he should go to the wedding because it would look odd if we were both missing.  Isabel said she would take me to hospital for the scan,

We don’t yet want to tell the world about Bertie, because until there is a confirmed diagnosis, what’s the point in everyone else being traumatised as well?  We definitely did not want to spoil the happy couple and all their guest’s big day.

Christine eventually picked up the dog, Bernie is badly bruised and shaken, but nothing broken.

Wed 26/07/17 – Initial consultation with Haematologist – Day 5

NHS staff – 2, cumulative 27

I went with Pat to ward 42 of Darlington hospital to see Dr Mounter.  OMG this is obviously the cancer ward, it was an assault on the senses, Macmillan posters and literature is everywhere.  It is surreal and it felt like I was in a dream, because I don’t think what is happening to me has been fully processed and hasn’t sunk in yet.

There is a lot of chatting with the consultant and I told him that looking back I think Bertie had started at least as far back as last year, and then he examined me, sticking his fingers quite hard into my armpits and groin to check if the lymph glands were swollen there – I don’t think they were.  I also don’t have any other usual symptoms: night sweats, rapid loss of weight, loss of appetite, problems with urine or bowels, or itching etc.

He proceeded to tell me the process that was going to follow.  I needed a PET scan and then a biopsy, probably an ultra sound guided biopsy performed by a Radiologist as Bertie was very near the surface.  The biopsy sample would then be sent to Newcastle for testing and because of the complex tests involved, it would likely take 2 weeks to get the results.  Once the scans and biopsy results were in, he would meet with a multi disciplinary team to decide on my treatment, which is likely to be chemotherapy.  He will make the necessary arrangements and I needn’t now attend Monday’s appointment.

He also said that most Lymphoma’s are treatable and potentially curable – I’ll take that!

Positron emission tomography (PET) scans are used to produce detailed three-dimensional images of the inside of the body.  The images can clearly show the part of the body being investigated, including any abnormal activity, and can highlight how well certain functions of the body are working.

I learn later that the centres of excellence for cancer treatment are London, Cambridge and Newcastle, so perhaps I am geographically lucky.

Back home Catherine phoned and we confirmed what Bertie was.  she then obviously rang Bernadette who turned up on our doorstep not half an hour later with a bottle of Prossecco – I drank the lot!

Tue 25/07/17 – Fixed an appointment with Haematologist – Day 4

NHS staff – 2, cumulative 24

I went to my scheduled appointment with Dr Mark to give him my additional symptoms.  He said it was very helpful and updated my notes.  He said that if I had any questions or wanted to chat at any time just to come down and see him, they really wanted to be as supportive to me as I needed.  He asked if I wanted to make an appointment with him to chat after Monday’s first consultation with the Haematologist, but as he is transitioning to this surgery he needed to get his diary out to see when he was next in.  This turned out to be 8th August.  I thought that was too late, but he said that in the meantime, if I needed to see someone, see Dr Alison as she was as fully up to speed on my case as he was. I only had a 10 minute appointment but the same as Friday, I was in there a good half hour and never once did he try and rush me out of there.

I decided to not make an appointment yet to wait and see what Monday brought.

I actually felt like a faceless patient no more and that my 2 GPs were really looking after me and pushing to get the best treatment for me.  I was immensely grateful and comforted.

In the afternoon, the consultant Haematologist, Dr Mounter called me ( not his secretary) at home.  He said that rather wait until Monday, why didn’t I go to see him the following day (Wednesday) to get the ball rolling and of course I grabbed that with open arms.

I’m not calling him Dr Philip yet because I don’t know him.

Gosh your mind certainly works overtime in this situation, I am first delighted I am being seen so quickly but on the other hand am deeply anxious that maybe Bertie is so far advanced that they realise treatment has to be immediate. I will find out tomorrow.

This is only day 4 and I can’t emphasise enough that the speed and quality of the care I received and am still receiving from my GP’s and both hospitals has been nothing short of outstanding.  It is seriously impressive how seriously impressive the NHS is when it really matters, trivial aches, pains and sore throats aside.

Things are beginning to sink in for both Pat and I and when he returned from work we both had a few tears – the first since day zero.

Mon 24/07/17 – Trying to get an appointment with Haematologist – Day 3

NHS staff – 2, cumulative 23

I went to the surgery at 9:00 am to be confronted by a waiting room bursting at the seams, it was going to be a long day.

I assumed I was just another faceless patient but when I spoke to the receptionist she knew exactly who I was and had in fact spoken to me while I was at the hospital Friday.  She waved me straight through to the secretary’s office where all the appointments and referrals are dealt with, much to the annoyance of all those waiting – I felt like saying, look, I am probably quite seriously ill, so give me a break.

The secretary was lovely and I explained that I wanted a diagnosis as speedily as was possible and what was the procedure for getting that done privately.  She said that she could probably get me in somewhere at the earliest Thursday but probably Friday, but what was the point when I already had an appointment for the following Monday with the Haematologist consultant at Darlington.

Lymphoma is a blood cancer, hence the Haematologist, rather than Oncologist which is for ‘solid’ cancers.

I wasn’t aware that I already had an appointment, it would take a couple of days to reach me by post.  Apparently Dr Alison and the Hospital were in discussions on Friday while I was still in the hospital and had already arranged the referral appointment then, I was impressed.

Phil had mentioned that if you go private, the whole process of diagnosis and treatment can, but not always, become fragmented.

I was consoled by having an appointment within 1 week which I thought was pretty quick so abandon all thought of anything private.

It occurred to me that all the doctors were not talking about Bertie being anything other than Lymphoma, not liver cancer or a cyst for example, which I was still considering was a viable outcome.

Sun 23/07/17 – Musings – Day 2

I had arranged to to the Clervaux Summer Fair with Isabel.  We decided to park in Hurworth and do a circular 5 mile walk taking in Clervaux en-route.  The route is practically flat and I am shocked to find that I feel slightly breathless and feel like I need a baby sling to support Bertie.

The last week in June I had gone to the Alps with Pat and our niece Clare and I had walked nearly 100 miles that week up and down mountains with no issues at all.  On Saturday 15th July I had walked 12 miles with friends on the Teesdale fells, again with no issues apart from Pat leading us all through a bog in search of a path.  So this new breathlessness gave me cause for concern.

Mike and Andie are long time friends of more than 25 years and are currently swanning around the coast of France in their yacht.  Mike is also my Fitbit friend who sends me a cheer every single day.  My step count has plummeted since the reaching the lofty heights of 230k steps in the Alps.  He sent me a message telling me I was ‘hero to zero’ and I felt obliged to tell him that I really did have a note from the doctor.  They rang me from France to find out what was going on and helped me decide that if by getting all the requisite scans and biopsies done privately I should, which should speed up a diagnosis.

Mike jokes with me that essentially I am like John Hurt in ‘Alien’ with something struggling to burst out of my stomach – v. funny.

I resolved to pop in to the GP surgery tomorrow to explore options as I don’t think I can cope with waiting 2 or more weeks for a consultation.

Sat 22/07/17 – Bombshell – Day 1

Well the bombshell has been dropped and we were both still reeling unable to process what has befallen me, it is still too raw.  We have been brutally confronted by my own mortality and it is crushing.

I am constantly veering from trying to see something positive in all of this to sinking into the depths of despair when my possible fate sneaks back into my head, it is emotionally exhausting.

I drove into town to pick up a digital radio I had ordered.  Weirdly I walked around not trying to hold my stomach in as I had been doing for a while because I was no longer fat, I just had Bertie, although I admit by doing that I just look pregnant.

Back home while tuning in the new radio,  I discovered the Magic Soul station.  Oh my what a revelation, the radio playing the continuous Soul that I love of the past 40 years of my life.  I am delighted. It’s the musical equivalent of my life flashing before my eyes.  I took this as a bad omen.

We chewed over the possibilities of what Bertie might be, how bad it might be and what was surely coming our way. We were still in shock and there was and still is a lot of black humour.

One possibility we jested is that I might just have really bad constipation and therefore ‘just full of shit’ – oh how we laughed.

Bernadette, Pat’s sister called round and we told her Bertie’s name.  Pat, ever political said he thought I should call it Boris as he’s cancerous. I told him that ‘it’s my f***ing cancer and I’ll call it what I like”.  Happy days.

I began to think back and realised that lots of little symptoms had perhaps been manifesting themselves, but I had just put it all down to getting older and fatter.  Now I could join the dots.  Even as far back as last year, my abdomen had been distending slowly, not enough exercise I thought at the time, but just lately it had begun to get me down as nothing I tried seemed to have any impact.  For a while now I have been unable to take a deep enough breath, nor bring my knees to my chest because Bertie is displacing things in my abdomen and something is maybe preventing my diaphragm working properly. I also feel constantly full.

I decided that Dr Mark or Dr Alison needed to know about these symptoms, the more information, the better the diagnosis.  I logged on and booked in for Tuesday.

 

Fri 21/07/17 – Initial urgent GP referral – Day zero

NHS staff – 21 – although in reality there were probably more behind the scenes that I don’t know about.

I went to the GP’s surgery for 8.30am and saw Dr Mark Kent (Dr Mark) who examined me or more specifically my pulsating abdomen.  He asked how long I had had the pulsating and how long had my abdomen and stomach been distended.  It had only really become noticeable and acute in the last couple of weeks.

He immediately tried to get hold of a vascular surgeon at Darlington Memorial hospital but he wasn’t available.  Dr Mark said I had to be seen immediately so started calling Durham hospital instead and I asked him to try James Cook first as its easier for my family.  He did and they said they would accept me.

Dr Mark asked if there was anyone who could drive me there as I wasn’t allowed to and as luck would have it, Pat was home that day as his car was in for a service.  If no-one was available, they would have to call for ambulance transport.  It would be better if someone could drive me, then I’ve time to pack a bag.

I was a little bewildered and slightly alarmed by this turn of events as I was sure that the GP would just tell me it was normal, but I was going to a hospital, so they would surely sort me out.

I drove home, only 5 minutes, packed a bag and by 9:30 was being treated as an emergency in the acute unit at James Cook hospital under the care of the vascular surgeon there, Mr Green.  Pat stayed with me the whole day, I love him to bits.

I read the documentation Dr Mark had given to me to give to the hospital and sure enough the diagnosis was aortic aneurysm and/or epigastric mass.  Bizarrely I felt very pleased with myself for my correct self diagnosis.  I also discovered that my named GP was in fact Dr Alison McNaughton-Jones who lives opposite me and with her husband came on my recent guided walk around Neasham.

I texted Isabel, my good friend of nearly 20 years telling her I was in the hospital as only the day before, her and her mum and been round to my place for lunch.  Her mum was more worried than me.

So getting down to business, a nurse first stuck a cannula (like a tap) in my arm and took a few blood samples for testing.  Then a doctor came to examine me and my abdomen and made extensive use of his stethoscope and checked my pulses all over my body.  He then went off to get an ultrasound machine to test the pulse in my feet.  WTF, its my abdomen not my feet!  Apparently he was checking to see if bloodflow there is impaired.  We are none the wiser if it is or isn’t.  He told us that he had ordered a CT scan for me.

Eventually another nurse came and tried to take more blood samples, though directly from my arm as the cannula had been flushed with saline, after his second failed attempt another nurse had a go, this time successful.

Then a porter came for me to take me to the CT scanner.  I can’t remember how long the scan took, save to say the Scanner lady stopped halfway through to go and talk to a doctor, ooh dear.  The porter then returned me to the waiting room.

I was called yet again by another nurse who said I had to have yet more blood tests including one for transfusion purposes.  Were they going to operate on me that day or were they worried the aneurysm would rupture and I would bleed out? I never did find out the answer to that question.

Pat said that even the waiting room was now concerned for me as every time I came out of a treatment room I had yet more dressings on my arms.

We had a logistical problem in that Pat needed to get back to Darlington to pick up the car from the garage, but we didn’t know how long we were going to be at the hospital.  He rang Catherine his sister to see if she would be available to pick me up from the hospital, but she was in London, so he rang Bernadette another sister to see is she was available and she was.  Of course we had to tell them both why.

I hadn’t eaten since lunch with Isabel yesterday so was feeling a bit faint with hunger by this time, but was nil by mouth in case they were going to operate.

After a long day and my arm now resembling a pin cushion I was called to see the surgeon’s assistant.  He said a lot of people had been involved in looking at my case that day including the CT scan images and results of all the blood tests: surgeons, radiologists, haematologists etc and they concluded that the good news was it was not an aortic aneurysm.  I was not to be the subject of a ruptured one which was their fear. The bad news was that the Radiologist could see some sort of mass there and it looked as if it was coming from the lymph glands, but because the CT scan was focused on the aneurysm, not the mass, it was a grainy image.

He said that it was likely Lymphoma.  I had to leave the care of the vascular team and be referred to the Haematology team in Darlington (more local) and would be seen probably in a couple of weeks.  The pulsating was a result of the abdominal aorta resonating through the mass apparently.  He said I would need yet more blood tests and could have them there and then or wait until I got into to see the Darlington team.  I opted for then. He asked if either of us had any questions and I think we were still too stunned to take it in and said no.  But of course we had a gazillion questions. Jesus, I’ve just been given a death sentence and I’m just being sent home, it seems inhumane.

We finally left the hospital after 9 hours at 6:30 pm shell shocked and devastated and drove home in almost stunned silence.  I had only popped in to see the GP and by the end of the day I appeared to have a death sentence.

I can tell you we had and are still having a roller coaster of emotions.  Our googling had dredged up the fact that an epigastric mass could be anything from a cyst, a benign growth or lymphoma, surely I hadn’t enough tests yet to confirm its Lymphoma?  Lymphoma = cancer = death.  I was convinced that if I did have cancer, it had been caught too late and was now so advanced that it was untreatable and I would be dead by Christmas – its just too devastating for words.  My biggest fear was for Pat, how would he cope with my loss and living without me, it just doesn’t bear thinking about.  I almost can’t bear seeing him so wounded. I am only 55 and still have loads of plans for the future, it cannot be happening that I will not be here to do them.

Our whole world in the space of a day has been reduced to this one thing and waiting weeks (or months?) to get to see a consultant about it is the most tortuous thing imaginable and a quote by Virginia Satir given to me by Catherine Marshall sums it up perfectly:

“The certainty of misery is preferable to the misery of uncertainty “.

We decided that we needed more information and answers quickly so called up Phil, our nephew who is a consultant Radiologist and deals with this sort of thing every day.  Pat was a bit wary at first about calling him, but bowed to my pressure.  Phil was wonderful and professional and gave us a lot of information and facts about what the outcomes were and likely course of events.  We always think of him as one of the kids, but he has proved today that he is very far from that now and we are immensely grateful to him.

The nuggets that I take from Pat’s conversation with Phil are that there is no correlation between the size of the mass and it’s seriousness, it is likely to be treatable and the medical people have been able to see it and get to it because there is not much fat on me. He also said that whatever we do don’t google it! but of course we did and do nothing but that.  He has been swiftly elevated to the lofty position of favourite nephew.

My epitaph is already decided then, to misquote Spike Milligan – “I told you I wasn’t fat!”

I decided to name this as yet undetermined ‘thing’ Bertie, a gentle and unassuming name,  as it will be easier for friends and family to ask me how Bertie is rather than how’s the cancer coming along.

We end the evening by suppressing our thoughts with alcohol to enable us to sleep.

Thu 20/07/17 – Discovery of mass – Day zero minus 1

I was at a very relaxing Pilates class in Neasham where we live on Thursday evening.  I was lying flat on the floor trying to concentrate on my breathing and again with the pulsating abdomen.  I put my hands on my abdomen and to my horror I could feel a rock hard mass there and I definitely don’t do enough sit ups to produce that.

Back home, Pat and I both laid down flat on the floor comparing six packs, there was definitely something amiss with mine.

I started googling (is to google a verb now?) symptoms and after an hour or so diagnosed myself with either an aortic aneurysm or an epigastric mass, neither of which sounded very promising.

I made up my mind to try and get an appointment with the GP. I logged on to the surgery at 10:00 pm and as luck would have it, I could get an appointment for the following morning at 8.30. That’s unusual to be able to get such a quick appointment.

 

Wed 19/07/17 – Prompt to see GP – Day zero minus 2

I am having my final hypnotherapy session for my fear of heights. Fiona Cunningham at Lemon Grove Holistics has managed to cure my irrational fear of heights with just 3 sessions.  Lying flat on the therapy bed, because I am unable to get comfortable enough in a chair to properly relax,  my abdomen is pulsating as though my heart is going to beat out of my stomach (this has been going on a while – but more pronounced today) and I mention it to the hypnotherapist.  She says I should get it checked out and I just say yes, whatever.

I mentioned this to Pat, my husband that evening and he said yes perhaps you should go to the GP, I just said yes, whatever.