27 October 2015 – Another treatment milestone (Cancer and Me 38)
It’s two months since I last wrote. What’s been happening?
I had the third cycle of Bendamustine a few weeks ago – the 16th lot of chemo in my life. That’s my 28th lot of drug treatment if you include the Rituximab maintenance. I had my 10th CT scan a couple of weeks ago. And who knows how many blood tests I’ve had by now!
I weaned myself off the steroids eventually, but I’d still say that the side effects of this round of chemo have been more sickening than any I’ve experienced since my struggle with cancer began. Even with anti-sickness medication, the nausea has gone on for 8 or 9 days after the chemotherapy.
That’s when it’s been really good to be able to work from home. After the experience of the first and second cycles of Bendamustine I planned in advance for the last one to work at home for the whole week after the treatment. Travelling 50 minutes each way is not what you want when you’re feeling groggy. If I’m working at home and feel sick I can just take myself off to bed for a couple of hours and work when I feel better and just work later.
Apart from that week or so after each cycle of treatment I’ve felt increasingly ok. The lumps that started the whole thing off are gone, and I don’t have any discomfort in my groin. I didn’t mention it at the time, but even during the car journey back from our holiday in Wales at the end of July I had real painful discomfort – so uncomfortable that Heidi had to take over the driving. I just feel normal now. I’m working pretty much every day and everyone says I’m looking well.
So now that I’ve had three cycles of chemo what’s next?
The CT scan is supposed to show the extent to which the chemo has been effective, and based on the results my doctors in Basingstoke will discuss my treatment with the Lymphoma specialists in Southampton. Out of that discussion should come some sort of plan for the stem cell transplant. In the last conversation I had with my Haematology doctor he reckoned it would depend on when they have a slot free in Southampton, so it could be November or it could be January. And if it’s January they may want me to have another cycle of Bendamustine to keep me going.
I don’t really know which timescales I would want if they gave me the choice!
November would mean ceasing work before I’ve saved enough money to cover any of my tax bills due next year. (Even working until the end of December would still leave us with a gap to fund one of the tax bills.) And it would mean being in hospital for Joe’s birthday, and bald, broke and extremely exhausted for Anna’s birthday and Christmas.
On the other hand, having the stem cell transplant in January, would mean having it looming for another couple of months and through Christmas, and making the whole saga last longer. I’d be working and living normally (except for maybe another chemo and a week of feeling sick), feeling normal, looking well, getting used to feeling better, and all the time knowing that very soon the medics are going to make me very ill such that I’ll be out of action for months.
I don’t think I’ll get a choice. I think I’d be a little disappointed if I go straight on to have the transplant in November, but either way it’s a big thing on the horizon. Let’s see what the doctors have to say!
One final point. I was really proud of my eldest son Jacob, who is 18. He recently somehow came across the Anthony Nolan Trust (anthonynolan.org). The charity basically facilitates stem cell donations, maintaining a register of donors and arranging stem cell harvesting to provide the stem cells for donor transplants (allogenic). It’s set up to help people with blood cancers (lymphoma or leukaemia) who need stem cell transplants, but for whom for some reason the autograft (harvesting and using one’s own stem cells), which is what I’m having soon, is not possible. Jacob has registered his interest and is going through the process to ascertain whether he is suitable to go on the donor register. It was completely his own idea, because he wants to do something to help people like me.
Having seen this, all of us want to encourage you all to have a look at the website information, and if you feel able, considering becoming a donor and help people with Lymphoma or Leukaemia.