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 8) - The stable phase
It’s been a really great couple of weeks. Of course it started with disappointment and me not getting to go to the Dressage Winter Championships due to a breakdown in communications. That was also the week that my Doctor told me he had concerns that my blood counts weren’t responding as he’d hoped and that as a result he was going to slow down my Venetoclax dose increase. That was probably my first setback with the treatment although to be honest I was expecting it to be a long haul, I wasn't expecting an immediate change, after all it takes 12 months to complete the course of treatment. I was also concerned that it felt counter intuitive to slow down the Venetoclax ramp rate although he later explained the toxicity of the drug means that there is a balance to be struck between it being effective and it causing damage.
Following The Winter Nationals debacle came the NAF Hartpury Festival of Dressage and this time I was in no doubt about attending. Even without my illness it would have a different week due to the restrictions. This meant that there was no press office as such and as a result I didn’t take my laptop to edit on site. I also didn’t spend long days at the venue. But it did mean I videoed full sections of classes rather than flitting about as I normally would have done. I used both cameras, the PXW-Z190 outside and the HXR-NX80 inside. With both cameras I had the exposure set to manual and set the white balance before starting shooting. Both videos cameras were set up to shoot in HDR HLG.
Before I set off to the Festival of Dressage I had a more positive consultation with my Doctor such that he allowed me to proceed to increase to a half dose of Venetoclax at 200 mg per day. This meant that I had to fit blood transfusions and blood tests and picking up drugs in with my videoing schedule but it all worked out somehow. More and more I'm finding that as I'm trying to juggle three different treatment strands, Venetoclax, Obinutuzamab and blood transfusions I really have to have my wits about me to ensure that the right thing happens on the right day. I sense that the NHS are getting very busy and that if you haven't got a clear plan in your head of what is going to happen no one else will have. Having said that once you have agreed on the course of treatment for the day it is nice to sit back with a cup of tea, a healthy NHS corned beef sandwich (hopefully on brown), orange juice and a pot of strawberry yoghurt and while away four hours while they top you up with blood or drugs.
The Hartpury Festival of Dressage was quickly over and I'm going to take my time publishing the videos from the event. It was nice that Charlotte Dujardin was there with Florentina who I haven't seen out competing for a couple of years and I was able to catch her riding Carl Hester's Imhotep on Saturday night in the Elite Stallions Young Horse Championship. One thing that has really helped me has been the Equipe App which I don't think I've ever seen before but which has results, retains starting order, a full break down of scoring plus a press page with the details in "cut and paste" friendly format. A real winner and I did wonder where have you been all my life? I never worked out how they got the full results uploaded so quickly, there wasn't electronic scoring in the judges' boxes (I asked) so the results must have been uploaded by hand once the sheets had been collected.
As I said above I didn't spend long periods of time at Hartpury but went in for short sprints. For example on Saturday I went for the end of the CDI 3 Star Inter I so I could video Matt Frost and Helga and I then nipped inside for the start of the evening performance so that I could video Charlotte Dujardin and Imhotep. I had videoed Sadie Smith riding this horse but the combination with Charlotte was new to me and one I didn't want to miss. A had a slightly worrying moment when H&C sent the Hartpury muscle round to ask what I was doing but luckily they accepted my argument that I was accredited and that as I wasn't live streaming then I wasn't contravening their sole rights to broadcast live.
Since the Festival I've spent a lot of time editing and publishing videos especially as it has been so hot. We have had the hay cut but I'm playing no part this year other than opening the gate. It's currently lying in about 20 large bales in our meadow and if nothing else it's giving Boris something to pee up; hopefully they'll get round to collecting it before the weather breaks on Saturday.
My most recent consultation with my Doctor was again positive such that he doesn't want to speak to me for a month while the blood transfusions and Venetoclax do their job. I'm already in Obinutuzumab Cycle 3 and as I said we're holding at a half dose of Venetoclax (200mg) per day while my bone marrow gets its act together. It's being helped by Filgrastim injections 3 times a week which I'm getting quite adept at giving myself. The chocolate diet continues as does the 2 litres of water per day. So it feels like I've reached a stable phase for a month and we'll see where we are in a few weeks time.
There's been a lot in the press about Freedom Day and it's impact on people like me with compromised immune systems but as I hope you appreciate it isn't in my nature to play the victim or expect others to suffer on my behalf; so get out and fill your boots and create the wealth that will pay for my treatment and research into the disease and Covid-19!
Looking ahead I've got Hartpury International Horse Trials to look forward to and I've also applied to Blenheim in September. I have to say the media accreditation process for Blenheim has to be the most complicated I've ever encountered but thank you to the Jockey Club for taking the event on. I will also put in an application for Bicton 5 Star when it becomes available. I've even put my name down for a day of show jumping at Hartpury at the end of the week. It's great to keep that camera busy!!
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