Just a brief update.
I was able to stop the Filgastrim shots after last week’s blood result which was the first marker of progress. This week’s result confirms further progress – my platelet levels are now in normal range (just) and the other blood markers are all moving the right way. Still no side effects.
I’ve now been on the full therapeutic dose of Venetoclax for 1 week and I still feel fine – no side effects. The lymph nodes in my groin and neck have gone down, and the blood test I took this morning shows the beginning of an improvement with my neutrophil levels above 1; for comparison 4 weeks ago they were 0.6. I hope this is real and will continue. The first real marker is being able to stop the daily Filgastrim injections (bone marrow stimulant).
I also hope there will be good news about the audiobook of Exile soon.
So I’m coming to the end of my second week on Venetoclax, which means I’m now taking 50mg/day and heading for 100mg/day on Wednesday. So far so good, no side effects other than many more trips to the toilet because of the extra fluids I’m drinking to ward off Tumour Lysis Syndrome (look it up, it’s not nice).
I took part in the annual Lighwater Village Quiz on Friday with my usual team. I haven’t been able to take part for the last 3 or 4 years, though my team did win without me one year. As usual we won the very demanding 100 question table quiz, and I was able to hear most of the questions as they were read out. We then lost in the semi-final up on stage in the ‘fastest finger first’ buzzer round. Was I restricted by my hearing in answering the questions quickly? Yes, I think so. Would we have beaten the team that defeated us if I was 100%? I doubt it, they were very good and went on to win the title.
I’m due to start on Venetoclax next week and escalating the dose up to the full 400mg/day will take 5 weeks. Venetoclax is new, so new that I’m the first patient at Frimley Park to take it. So they’re being ultra cautious, and I have to be admitted to be monitored for the first doses and the early escalations. Tumour Lysis Syndrome is one of the major side-effects and that is nasty. Hopefully when I’m stabilised on a suitable dose the other side effects will be tolerable because I’ve got used to feeling good in the past 7 weeks since I stopped Ibrutinib. I’ve been propped up by daily injections of a synthetic bone marrow stimulant which is effective but can’t be used long-term.
So I apologise if I disappear for a month or so while I’m getting used to this new stuff. I hope to reappear in March and get to Eastercon and maybe a Southampton match or two (though given their current form I’m not sure I want to see them).
The current work-in-progress is trundling along and I hope to have a finished first draft this year.
So goodbye to 2017, a year that started out in a bad place but ends rather more favourably.
This time last year I was seriously unwell, in and out of hospital, with a crashed immune system and had had to postpone my scheduled cochlear implant. The decision to put me on Ibrutinib at the end of Jan turned things around; my white cell counts recovered to near normal levels though at the expense of considerable joint pain. I was able to resume a social life, albeit restricted by my deafness. That changed in the summer with my successful implant. It is not my original hearing back but provides a good level of functional hearing, though it is overwhelmed by high noise situations, and listening to music doesn’t currently work.
The reviews for Exile and Nandor continue to be gratifyingly positive though not accompanied by any substantial sales. It was great to be shortlisted for the BFS Best Newcomer Award for Exile and gave me a reason to go Fantasycon, though the con crud I picked up there turned into a chest infection that eventually needed IV antibiotics and week in hospital to shift it.
My ‘faery serial killers in the New Forest’ contemporary fantasy novel remains unsold, though it is currently on an editor’s desk at a major publisher. My current work-in-progress, a ‘more epic’ fantasy adventure is now over halfway in first draft and crawling slowly forward.
A major issue in the second part of the year has been the decline in my mother’s health. She is 96, but back in the summer was still mobile enough to be taken out for a drive into the forest or to the beach. This is no longer the case. She does not move from her bed without a lot of assistance and needs considerably more care than last year. She did not know me the last couple of times I saw her.
At the close of the year my own health is again in question. A blood test just before Christmas showed an alarming drop in my white cell count. My consultant feels the Ibrutinib is responsible for the drop and has taken me off it. With injections of a bone marrow stimulant my count recovered and I will have another bone marrow biopsy next week – oh joy! – that will determine the future direction of treatment. It may be that I will have a period with major medication in 2018. That would get the year off to a good start.
I survived Fantasycon, didn’t win the award I was shortlisted for but hey, it is still a huge honour to have been nominated. My hotel (the Park Inn) comfortable enough but the bar prices were high (£5.10 for a 330ml bottle of beer!). It was also about 10 mins walk to the con so not ideal for the evenings when my knees and ankles were reminding me of their distress.
I managed OK in the panels if I sat at the front but conversations around the bar were definitely difficult. If you spoke to me at the bar and got an odd answer (or none at all) it is probably because I didn’t hear you clearly.
I met in the flesh a bunch of new Facebook friends, 2 people came to my reading (but did seem to enjoy it) and I had useful conversations with several editors about my unpublished contemporary fantasy novel – so job done.
If my health holds up, I should be able to do more cons so maybe see you in Chester and Harrogate next year.
We were in southern Spain last week for a bit of late summer sun and had a very lazy time. Sat around the pool, drank cold beer and read Mark Lawrence’s ‘Red Sister’ and pretty good it was; Mark Lawrence does Harry Potter – well almost. A young girl with prodigous gifts is trained as a warrior nun, and being a Lawrence novel the story is several shades darker than HP.
Saw the haematology consultant today and she is happy with my condition. The joint pain associated with my medication is slowly improving and I feel well. So I’m off to Fantasycon this weekend. I just had to be there on the off-chance that I win the ‘Best Newcomer’ award for which I’m shortlisted. Looking forward to catching up with a lot of people I haven’t seen for a couple of years. Just bear with me if we’re in a noisy environment – it might overload my implant and I’ll struggle to hear you.