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