Just an update on events so far. Well I’ve been in here for 3 weeks now unable to leave my room and so far things haven’t been too bad, not as bad as I feared anyway. My first round of “conditioning” chemo has finished. It was three different treatments a day for five days. There was a bit of sickness some headaches and just not feeling “right”, generally it felt like a hangover just for 5-6 days. Unpleasant but bearable the anti sickness helped a lot, especially the IV one first thing in the morning. All I’ve got now is a nasty metallic taste in my mouth which upsets my stomach a bit but hopefully that’ll clear soon.
All my blood counts are doing as expected more or less and its a waiting game to things to come up to a safe level so I can go home for a week or two which I’m so looking forward too, about 2 more weeks is what we’re expecting.
I gave up with the wifi here and got my wife to get me a 4g MIFI hotspot which has been a godsend for generally passing time but mainly for Skypeing home to see and speak with my wife and son. My wife was ill for a week so couldn’t visit so missed the whole chemo week which she found especially difficult. She’s better now thankfully and visiting again.
I had a bad spell of bleeding and bruising at the beginning as my platelets (clotting) dropped to 2! (The normal range is 130-250 ish) so I had spontaneous bleeding from my eye, nose, gums, blood blisters, bruising……. That was pretty scary but was got under control pretty quickly with lots of blood products. At times I was having several units of blood a day and several bags of platelets too as well as other IV clotting things too, some days I was on a drip all day bar small gaps to shower and that was it. Drs and nurses have been great throughout.
I’ve had loads of visitors family and friends and a visit from BullHeart too which was really helpful, thanks. I’ve not gone too stir crazy yet! I had a moment one evening where I had a bit of a tantrum to myself when I had to change rooms but that’s it, it was weird just nonsense and completely irrational. I’m probably getting a bike and turbo brought in soon, not sure where exactly it’s going to go in this little room but I’ll figure something out. The Drs have said bored is good as it shows I’ve tolerated the treatment ok and things are all on track.
The only procedure left to do before I get out is a lumbar puncture and a dose of chemo into my spinal fluid while they’re there too. We were hoping to do it yesterday but my platelets are still a bit of a pain not rising as they should. It should be something like a base of 40 + 10 + 10 and leave it an hour should equal something like 55 but I’m coming back to 45 ish. A load more blood tests this morning to figure out why, platelet aren’t usually cross matched like blood but it might be that I need them to be, there are a few other reasons too which can be dealt with which they’re testing for two.
So a massive massive! Thank you to all of those blood and platelet donors, you really are life savers!
I’m absolutely determined to beat this and the odds, I’ve been much more positive these last few weeks. Still tough times ahead but we’ll get through and out the other side and will make the absolute most out of life.