Havent blogged in ages as quite frankly there not been a lot going on …and I’m not one for rattling on when theres not much to rattle on about. But I thought I’d check in to keep all up to speed about where things are.
I’m now on Day 86 post auto transplant and my immune system seems to be functioning well (touch wood), and besides 2 colds/coughs (one that’s still with me) I’ve been doing okay. It took a while before the energy levels started creeping up and there were days where I honestly thought this was the new ‘me’ – everything is quite an effort. I still have some weird aches and pains regularly in my bones/joints/muscles which apparently chemo can cause – which can go on for years. And I guess there has also got to be a bit of age-related aches in the mix there somewhere (I have to remind myself I’m no spring chicken anymore, despite the brain trying hard to convince me I’m still 25). But generally things are good.
I’ve been for fortnightly clinic appointments with the lymphoma team at Jimmys and they are pleased with my progress. I have also now had 2 meetings with the ‘transplant team’ – a different set of doctors who focus primarily on allogenic stem cell transplants for people suffering from blood disorders and in some cases where primary/secondary treatment hasn’t worked or where they are not confident prior treatment has fixed patients good and proper (me). The first meeting was super scary – it was all about the risks and statistics. I had been pre-warned about this meeting on the forums by the network I have become a part of over the last year and a half. I was asked a pile of questions, both verbally and in a lengthy questionarre that was sent to me beforehand. I had a world record 13 vials of blood taken from my arm for a range of tests, and was booked in to go for a heart function and a lung function tests (both of which I had last week).
The 2nd visit to the transplant team was this week Monday where I was presented with results and my personal risk score. Apparently I am a ‘3’ but the doc thinks in reality I’m a ‘2’ (1 being great, 5 being terrible). This is not so good and it is mainly down to the lung function test results which showed they are working at around 60% efficiency. Now that could be because I had a cold/cough that day. Or I was just having an ‘off day’ and didnt blow hard enough. Or it could be damage to my lungs from the ABVD chemo component Bleomycin. A further CT scan will be arranged to find out more.
So anyway, this meeting finished off with things still very much up in the air. The docs are not sure if they should put me through a 2nd transplant soon (allogenic i.e. a donors stem cells) or take a ‘watch and wait’ approach. The next big thing is I am soon having my 100 day scan. Next Tuesday to be precise. After which they will analyse the results and try and come to a decision on the recommended way forward. It all depends on a) the results of the PET scan and b) if they think that if I do relapse that they can get me back into remission. I have a clinic appointment on the 13 December to get the results and hear their views.
My gut feeling is the scan results will be good. I am hoping that this will be the case and they will choose the watch and wait approach. That would be the best Christmas present ever..! At one stage I felt that it was a certainty that they would want me to have the allograft. Now I am not so sure.
Anyway I will post the news here when I know for sure….
I’ve been swimming! Yes, now that a) I don’t have a pipe protruding from my chest, b) the incision has healed up and c) I’m now more than 6 weeks past the transplant I am now officially allowed to immerse myself in the communal germ pool that is (apparently) what public swimming pools actually consist of (sorry, am I not selling it to you?). The kids are so chuffed that I’m able to take them and its great for a bit of a cardio workout. Emily absolutely loathes indoor swimming pools, but bless her, she always comes along. Having grown up in sunny Zimbabwe, I was always swimming. We even had a pool at home up until the age of 10. Indoor pools don’t quite cut the mustard for me either, but you gotta do what you gotta do….
Well swum, swan! 🙂
Nice one Clive. It sounds like you are doing great. Fingers crossed for the results you want and an enjoyable Christmas with the family!
Great to hear your progress! Wishing you the Christmas present of your dreams! My last cycle is the day before Christmas, I’m hoping for the best as well. Thanks again for posting and sharing it provides a lot of perspective and HOPE for others out there dealing with lymphoma.
Thanks Mahesh. Hope all goes according to plan for you and that appointment just before Christmas is the last.