I was chatting to my haematologist during my 2 monthly appointment at his clinic and mentioned that I was thinking of putting a YouTube video on something to do with fitness, exercise, food and old age ( or more probably in the reverse order!) and he was very enthusiastic. He was very keen that I did something about my age and my experience of having CLL because a lot of his patients who have just been diagnosed with CLL are upset and concerned at the prospect of having ‘cancer’ and of a possible deterioration in their general health, and imagine that it will necessarily change their life for the worse. Since I have fortunately experienced none of those negative consequences he thought that if I told of how it had affected me, or rather how it hadn’t affected me, he would be able to direct them to my YouTube, which would give them some reassurance – he seemed to think it would be ‘A GOOD THING’. SO I always do as I’m told, especially by people I like and respect – although not always by the other 99.9999…% of the population!
Here is a slightly different version of the information in the video if you came to it via my website rather than directly to YouTube
Hi, I’m 82 and have had CLL – that’s Chronic Lympocytic Leukaemia – for more than 6 years, how much longer I don’t know because it only gradually produced symptoms as my lymph nodes got bigger over several years, but I was a little concerned and my GP referred me to a haematologist who diagnosed CLL in August 2017 – at that time I had no symptoms at all apart from the enlarged lymph nodes, and they weren’t causing me any problems so I entered the ‘Watch and Wait’ phase. I got Covid quite badly just before the first lockdown and lost 10 Kg but recovered – but that’s another story. I was in no hurry to begin CLL treatment as I have a beard and the lymph nodes in my neck were not particularly visible, but eventually it seemed as if they had started to alter my voice slightly due to pressure in my throat so I agreed to start treatment in September 2021 when I’d finished my annual sailing holiday ( got to get my priorities right), that was just over 2 years ago from when I’m making this video in December 2023. The enlarged nodes are caused by the build up of cancerous white cells. I guess the drug I have is the usual drug for CLL – Acalabrutinib, which is a kinase inhibitor – it works by blocking one of the metabolic pathways that the cancerous cells use to multiply so gradually reduces the population of bad cells, which get flushed out of the lymph nodes over a few months so your white cell count goes up for a bit. Since CLL messes with your white cells, which are a major part of the immune system I was proscribed a propylactic ( i.e early defense ) antibiotic CoTrimoxazole , and an antiviral Aciclovir to reduce the risk of Shingles. Remarkably none of these pills had or have any side effects whatsoever – I’m still taking them! So if you’ve just had CLL diagnosed, or know someone who has, what can I say;- CLL is a common form of bloof cancer – its the most benign form and nothing like as frightning as the other blood cancers and is very well controlled by modern drugs like Acalabrutinib that are taken as tablets twice a day rather than having to be administered in hospital and they are very well tolerated by most of patients. Has it altered my life at all? Physically not at all, practically very little – an hour every two months for a visit to the very friendly clinic, a couple of minutes twice a day to swallow tablets and 15 minutes once a week to load up my daily pill boxes to keep pill taking in order- that’s probably the sum total of the disturbance to my life! I do take some notice of the fact that my immune system is somewhat impaired, so I make sure I have all the Covid jabs I can, plus the Flu jab, and I am aware that I may be more liable to getting Sepsis – I was warned that I should take action if I had a fever of 38 degrees C or higher as that presents as a danger of Sepsis. On one occasion I did ring the clinic emergency number with a high temperature and was advised to go to A&E where I was put on an Amoxycillin drip and kept pumped up with antibiotics for 72 hours – although I didn’t actually feel that bad and certainly didn’t develop Sepsis – better safe than sorry. Overall, my view is that the world doesn’t owe me a living, or a life, and at about my age I’ve reached my life expectancy in actuarial terms, so its all a bonus from here on in – my response to the question ‘how are you?’ is invariably ‘Alive!’ – with a positive inflection. Just as the world (universe?) doesn’t owe me a living, so it’s up to me to make the effort not to be a burden on the rest of it, and that means making the effort to stay fit and health as long as possible. I am still very fit – I sail in summer and shoot clays and game in season, and pay attention to muscle mass by lifting weights and getting adequate protein (I’ll put up a separate video on that later) . On the positive side I think CLL has made me appreciate life and more the realise the incredible progress science and medics have made in my lifetime, or for that matter in the lifetime of my children. Rather than CLL closing down my horizons, its made me appreciate every moment of life in a positive way – I hope it does for you too. And the future – research into CLL and its treatment is suggesting that after some years the cancer cells may be in remission to the extent that it isn’t necessry to carry on taking Acalabrutinib – that might almost count as ‘cured’ but studying the effects of doing things for a long time takes a long time – watch this space! One last thought to leave you with; if you’ve recently been diagnosed with CLL it will tend to be on your mind a lot of the time in a negative way – I think its still there in my mind some of the time, its not a threatening thing, it is just part of life.
This is the bit of the YouTube where you fess up to being sponsored and thank your sponsors and try to get people to contribute to your ‘channel’ – well unfortunately no-one is sponsoring me and I’m not expecting anyone to ‘subscribe’ – but I must thank Prof George Follows and the staff at the Genesis Healthcare team in Newmarket who are really like my professional family, and BUPA who fund my treatment on the back of 40 years of contributions and almost no claims until CLL!