In April 2020 and in the interest of legacy I wrote a Wikipedia entry recording the thoughts and notable works of Harveywetdog. I admit I was ignorant of the rules concerning self promotion on Wikipedia and consequently my entry was correctly deleted and my account expunged from the system. As a result my original words and links were sadly lost but nevertheless here is a rewrite. Perhaps when I'm gone someone will be able to enter it onto Wikipedia as a fitting epitaph for my time on the Harveywetdog Project.
Chronic lymphocytic leukaemia (CLL) - one man's journey (Part 7) - Mindset and Medicine
I’ve subtitled my latest blog mindset and medicine. Two subjects I really know nothing about. I’ve dabbled with mindfulness and I’ve done everything I can to avoid medicinal procedures and practitioners - until now.
Why Me?
When you ask the question “why me” when you’re given a diagnosis of Chronic Lymphocytic Leukaemia (CLL) the answer you get back is basically it's just your “bad luck”. So it wasn’t attributable to the night you blew your mind on Bass Barley Wine as a teenager, the four shot Americano from Starbucks in Borders Books or the endless Tiffins from Costa; it isn't even attributable to work place stress; no simply “bad luck”; it was meant to be.
So how do we create a positive mindset from all of that? Because from the outset I was sure that a positive outlook would help treat my condition just as much as some very clever medicine; and let’s face it when it comes to CLL the medicine is very clever!
If I count my blessings and look at some of the good luck I’ve had over the past year then I’ve got to realise that social distancing and working from home has probably saved my life and certainly avoided me getting very ill from Covid. EDF Barnwood, where I worked, was notorious for “sick building syndrome” so I’m sure I would have caught something if I’d continued working there with my weakened immune system.
Similarly the revised working arrangement allowed me to complete my working role at EDF and retire before starting treatment. This was important to me, it won’t match everybody’s idea of work/life balance, but luckily we are all different.
And while a CLL diagnosis is clearly not something to be sniffed at, I was probably more worried that it was my heart or lungs that were the cause of my troubles. When I lay in that hospital bed on my birthday and heard "bone marrow, outpatient and lots of treatment options" I actually thought that sounds ok - after all I’d told myself I was ill and this all sounded eminently manageable. Much of the early treatment of CLL is watch and wait and while I may have ignored the watch bit and waited a bit too long only time will tell if the time it took me to come to treatment has caused long term damage.
I also feel particularly lucky that in these days of apparent NHS admission delays I’ve been able to start treatment immediately. I also feel lucky to be treated (mostly) as an outpatient and especially lucky to be treated by the Haematology team at Cheltenham/Gloucester and the Edward Jenner Unit at Gloucester. I really feel I’m in good hands and the whole team are committed to my care. The Project Manger in me may get a little frustrated at times but the Nuclear Engineer in me knows the importance of understanding the data, reading the trends and always acting on verified expert advice.
Another bit of good luck I’ve had in all of this has been to have “good veins”. I’ve lost count of the number of blood tests I’ve had or cannulas I’ve had fitted but to be able to do both with a minimum of fuss sets you up nicely for treatment. So no soaking my arms in horse feed buckets for me. And I must never forget to say thank you to the blood donors whose blood has kept me going these last few months.
I have to admit one thing that did frighten me a little in that hospital bed was the thought of standard chemotherapy. But I realised that if that is what it took to fix my leukaemia then chemotherapy it would have to be. When the consultant later talked about novel, none chemo, treatments I expressed a preference although he did remind me it was best to go for the treatment that would give the best chance of a long term fix. But once again this is where I’ve had another bit of “luck” because my condition is such that it would not respond well to conventional chemo but should respond to the novel targeted treatments such as Obinutuzumab and Venetoclax. Of course it does mean long term you've ruled out one treatment option but I do count myself lucky that the combination of the Covid crisis and the exact nature of my condition has made this expensive option available to me on the NHS.
Not a bad diet!
All of this has meant that I've been able to approach treatment with a positive mindset. I honestly believe you have to tell your body to both behave itself and help to repair itself. I think this helps the staff who are treating you and it will certainly help me if I'm not constantly worrying about certain side effects. So far I've been able to avoid most of the serious side effects that were outlined to me at the time of consent and my biggest concern now is that the treatment is actually going to work.
Harveywetdog Stuff
Obviously it is important to maintain life outside of treatment, and while I can't really travel to many events at the moment I have continued to tidy up the YouTube channel and address some of the outstanding Copyright issues that have been hanging over me. I've had a degree of success which makes me think that it is worthwhile fighting these battles. I've also had the opportunity to sell a piece of video which was nice.
I thought about going to the Royal Windsor Horse Show Olympic "trial" on 30th June but they wouldn't give me accreditation and they don't sell single tickets so I'll be giving that a miss. I really wanted to capture the Kings Troop Musical Drive but I guess I'll have to wait for another opportunity.
This Week's Treatment
In terms of treatment, last week involved a further two blood transfusions on Monday, telephone consultation on Tuesday where the doctor confirmed I would have my Venetoclax in the EJU and not as an inpatient, Thursday saw the start of Obinutuzamab Cycle 2 plus increase in Venetoclax to 50mg each day (plus associated checks) and Friday was a blood test 24 hours after the Venetoclax increase together after which the remaining tablets for week 2 were dispensed to me to take at home.
This means I've now had 50% of my Obinutuzamab treatment and my Venetoclax daily dose is currently at 1/8th of my final daily dose. This week was a bit complicated as the Obinutuzamab and the Venetoclax clashed, but this is the only time this will happen.
I
know people are disappointed with freedom day being postponed but I thought I’d
just give my personal perspective. Back in March 2020 and I couldn’t believe we
went into lockdown; it didn’t feel like the British thing to do.
Knowing what I know now if we had
carried on with life as normal then Covid would probably have got the better of my CLL
weakened immune system and I would have been a Covid death statistic “due to
underlying causes”.
I’m currently in a vulnerable group so
whatever happens nationwide I’m going to be careful and keep myself socially
distanced. Although I’ve had both vaccinations I was recently told I have not
produced any antibodies so basically I’m no better off than I was a year ago.
So my personal lockdown is set to continue.
Bringing these two threads together,
the 2020 me and the 2021 me, what do I feel now? Part of me agrees that we need
to ensure that Freedom Day doesn’t get pushed back again, we have to accept
that we are all living with risk and we can’t simply cocoon everybody in bubble
wrap. At the same time I have to think how many other people are there like me,
in their 60’s but with as yet unrecognised illness but zero protection from the
vaccination programme and who will be taken by the next wave of Covid “due to
underlying conditions”.
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