So finished 5th round of chemo fine, only one more round to go! Went to a local hospital for my bloods this time which was much easier than travelling all the way into the city. My potassium was still low so will have to work on that this month.
I’d managed to drop my steroids down to 0.5mg a day and after finishing the 5th round of chemo went down to a tablet every other day and then a week later I came off them completely. I won’t lie it was like running into a brick wall, for over a week all my joints and muscles ached and trying to do any exercise was almost impossible. There was even a day where spent to much time down on the floor which overstretched one of my achilles tendons and I could barely walk the next day but then the day after that it was perfectly fine again. Then a few days later (probably as I was then moving funny the few days before) my knee went into spasm. Was literally up all night in agony and the next day and then it was completely fine again like nothing had happened. On top of that while the rash itself hadn’t returned the itching had, unfortunately the allergy tablets didn’t overly help so was just a case of grin and bare it till it settled down, luckily it wasn’t as bad as it had been before.
We found out that neither of the kids would be going back to school till September so it removed any kind of dilemma of whether we should send them back or not while I’m still “shielding”. Though it does mean that that they would have been off school for 6 months before they get back in, and while it’s nice to get the extra time with them, also the 4 of us being stuck in the house day in and day out is also a little much!
Had my next blood and glad to say that my potassium levels were back up to normal and the rest of my bloodwork was fine. I’m still apparently as healthy as anyone else, guess there is something to be said about being “young, fit and healthy” while dealing with this disease.
Unfortunately, the night before starting my last round of chemo I had a twitch in my right foot that lasted about 30 odd seconds. This was the same symptom that happened when I first started suffering with the condition. After speaking with the consultant, I was advised to restart taking the dexamethasone at 1mg a day to see if it prevented it happening again in the hope that it was just some swelling causing the irritation. Luckily so far it hasn’t reoccurred since going back on the steroids, but either way it’s not a great sign.
Luckily I was still fine to go ahead with the 6th and final round of chemo, again got through it ok with just a bit of tiredness and constipation and no other symptoms. By going back on the steroids at exactly the same time the first few days I was actually buzzing and felt better than I had the previous week or so!
So that’s it, surgery, 6 weeks of radiotherapy, 4 months of immunotherapy and 6 months of chemotherapy and now wait and see.. In a way should be grateful that a. I’ve made it this far while still feeling so healthy, I know a lot don’t. b. I’ve made it through 10 months of treatment with only an annoying rash as the major side effect. However, I can’t help but feel it’s like the beginning of the end, even though I know I will be due another scan in a month or so to see if anything has changed and another stable scan would a massive victory. (though sooner if I get any more symptoms of the twitching).
