Chronic lymphocytic leukaemia (CLL) - one man's journey (Part 12) - what's next?

Thanks for all the support following my trips to Weston Park, the Winter Nationals and Cirencester Park; it's been great to be back out videoing again. Unfortunately I still haven't upgraded my video camera as it's hard to work out what Sony are doing when it comes to importing the PXW-Z280 into the UK. I'm sure it's all to do with global supply chain issues but other equipment seems to be coming available.

Keeping an eye on his old dad
©Harveywetdog

Catching up

It's been a while since I've blogged about my blood cancer treatment; I think I said last time that it has been very steady as we go but since then I have completed my 12 cycles of venetoclax, started my Exjade treatment (to ensure my blood iron levels are kept under control) and I've had a further bone marrow biopsy to inform my consultants as to which steps to take next. I suspect this will go one of two ways; either I'll have another form of CLL treatment or else we'll set about tackling the pure red cell aplasia directly. I should know what they decide by the end of May.

I remain transfusion dependent and I'm having blood transfusions every two weeks. As I have two units of blood every two weeks I'm basically having a unit a week, and this is maintaining my Haemoglobin between 60 and 80 grams per litre. The normal level for a male is 132 so I wouldn't necessarily recommend this regime but I went for it on the basis that too much blood long term could be bad for me and I can manage reasonably at this level. Okay I get a bit tired and can look a bit pale but, the dogs are getting walked, the grass is getting cut and the arena is getting harrowed. I've decided that long days to the likes of Chatsworth, Somerford or Bramham are not advisable and have been replaced with more local trips to The Cotswold Cup and Wellington Premier League. July and August will be a great buzz of action, with three events at Hartpury and the Festival of British Eventing to fit in. Oh I do hope I've got my new camera by then.

Thank you Cirencester (X) Horse Trials
©Harveywetdog

People have been very kind when I've seen them out and about. I was very nervous at Hartpury for the Winter Dressage Championships (as all the Gold action was indoors) but I've been able to have some socially distanced chats at the events and explain to people where I am with my treatment. Big shout out to Hannah Cole for giving me lots of help with accreditation and the like and it was great to see journalist Steph Bateman at Hartpury and catch up with her news. And it was great to see Winnie one more time at Hartpury before she went off to her new role at British Equestrian.

At Hartpury for #NAFWDC22
©Harvewetdog

Aspirations

Officially, I am immunosuppressed but I was pleased to take part in some research recently which demonstrated that I do have some Coronavirus antibodies in my system. As I've said previously I always suspected that the Covid jabs have had something to do with my condition and the way my body reacted to the treatment so I'm not rushing to get a fifth jab at present. I'm not a total antivax conspiracy theorist, but I just worry that too much jigging around with your immune system with different drugs might not be good for you.

Coronavirus antibody test
(please excuse the blood)
©Harveywetdog

I spoke last time about my earnings from the BBC, and I'm pleased to continue to receive a trickle from the videos on YouTube. I appreciate the advertisements are a pain but as I've said before I want to cover the cost of my PL insurance and the various software licenses I need to maintain. It definitely wont buy me a new camera, PC or pay for my diesel! One thing that did surprise me was when my Talking Ben video suddenly became popular after 10 years, as a Short it doesn't earn a lot but it is helping to push my YouTube views up toward the 3 million mark.

Social license to operate

During the spring I became aware of the subject of social license to operate and how it applied to equine sport. This built nicely from my own research into Young sport attrition and both of these topics have been the subject of earlier blogs. I wrote to British Equestrian on the matter of Young sport attrition but 4 months later they still have not bothered to answer. 

I based my analysis on the entries for the Elite Stallions Young Horse PSG at the Hartpury Festival of Dressage 2015 to 2019. I found that of the top eight in each competition, 25% were no longer competing. I think at the time I gave Mount St John Freestyle, the exciting winner in 2017, the benefit of the doubt on the basis that 2022 would see her return to serious competition. This hasn’t happened, in fact she has now been replaced by the 2021 winner Imhotep as the next Potential GB team horse. We’ll wait to see if "Pete" fares any better than the others.

Not a very happy picture?
©Harveywetdog

One aspect that has interested me recently has been a YouGov poll on this whole issue of the future of horses in sport. It will be interesting to see what the answer was to the various questions - it would be even more fascinating to know who sponsored the survey!

And so it begins.............
Harveywetdog iPhone screenshot