Today I want to talk about anemia, and also my treatment. They have moved it forward to next week and that’s when I start the proper chemo. It could get rough.
But first Anemia. I had another blood transfusion on Tuesday. It takes a while but is actually fine, as you can just sit and read a book. It’s an odd contrast though, needing the blood and then afterwards how you feel. Those of you who give blood. Thank you. Thank you so much. It’s a huge thing, as you’ll see below.
When you have intense anemia getting up gives you a headache. Walking is exhausting and there are question marks over making it all the way up the stairs. Aside from this sleep is slow to come with strange chest twinges and if you get really low your vision starts to go. But the most annoying thing is without a doubt the heart beat.
It’s constant (which is obviously good) but you can also hear it 24/7. It pulps in your ears and is permanently audible, laying down for sleep, watching movies etc. If you’ve ever run for a bus or done serious exercise and heard it absolutely pound, it’s like that but 24/7.
Watching TV. You hear your heart. Trying to sleep. Heart again. Waking up. Heart. Listening to the band Heart…. Well you get it.
Then the transfusion. The best part of that is you can literally stand up and leave after three bags of blood. You can just feel the difference. Its better to walk, no headaches or faintness. Every action is noticeably easier. But the best feeling is waking up in the morning and it’s all peaceful. No more Heart noise. It’s bliss. And other people allow that to happen. People who give blood. Truly it’s a great thing to do and thank you so much.
Anyway that’s just how anemia feels. In other news we have moved my treatment up to start next week. So in preparation I went through a long list of potential side effects to Bendamustine as well as the drugs I will need to take. Hair loss is possible, permanent lung and heart damage, rashes, ulcers, nausea and general digestive tract issues. Developing a secondary cancer. Oh and death. But we will ignore that particular side effect for now. Not many drugs you can take to mitigate that one. Take two of these and you’ll be alive again tomorrow is not something that is likely to appear on a GPS recommendation.
So, as always, control what you can. I’ll be taking steroids again before, as well as more Allopurinol and a drug injected into the skin on the stomach every day to increase neutrophils (see previous blog, you need these to resist infection).
I have a little red card saying I can only have irradiated blood now. I also need to go straight to hospital (without passing go) if my temperature hits 37.5 or above. No delays apparently.
So all in all, with a permanent day bag by the bed. Transfusions every two weeks alongside it, and a 28 day cycle where you have Bendamustine and Rituximab day one and two of, that’s quite enough to prepare for. I think I’ll get an app or similar to remind me of each bit.
I would imagine this six months is not going to be a picnic. My body is somewhat stretched with its intense anemia and compensating for that, so it’s unlikely to sail through it all. I plan not to lose sight of the fact that after it I will hopefully have some decent remission time, a good few years I hope. That’s what I need to focus on. The kids still need me for a little while yet, so it’s important to keep trucking. (And for me as well. Obviously I’m at least as important as my dependants).
I will, of course, keep you posted. Lots of people have had this treatment before and lots more will continue to have it. I’m just flagging up about it as I promised to be honest on my blog and keep people informed, as well as helping anyone who is about to have the same thing. For the moment, and the next few days, I’ll just enjoy waking up without a pulse throbbing. It’s going to be peaceful (kids permitting).