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!!
Bertie the Bombshell 