After having the twitch in my foot my steroids were put back up to 1mg a day which prevented any more issues. Once the final round of chemotherapy was out of the way the consultant wanted to see if we start lowering it back down. The dosage went to 0.5mg for a week without any issues and then down to 0.5mg every other day. Unfortunately, within a couple of days I experienced another twitching episode in my foot, so the steroid dose went back up to 0.5mg a day and that seems to have sorted it out for the time being. Regardless of the dosage it’s not a great sign to have had 2 episodes of twitching despite being on a full daily dosage of Keppra.
Other than the up down of the steroids not a lot else has happened during the month other than recovering from the best part of a years’ worth of treatment! Managing to keep up the daily exercise and keep the weight under control and just spending time with the children while they are still off for the summer holidays.
The waiting game, nothing could be worse in the world than those few days leading up to a date for the next MRI and then waiting a few days to see the consultant. I’m generally fine in between but that couple days around the MRI and the wait in between feels like agony. I can only compare it being handed a death sentence, sitting on death row and you go to see a judge every 3 months who decides whether it’s finally time. I’ve been a little bit short with the missus, despite trying not to worry the little niggles here and there and the couple episodes of the twitching have probably made me more nervous that I’m letting on. The not sleeping well has kicked in as my mind starts focussing on what the result of the scan will show. Have the results of the scan in the first week of August so it’s now just a case of wait and see!
I've read all the months in your blog and it's comforting to read as very similar to my husband's journey. He's 43 and we have 2 girls 11 and 12. He has had the debulking op, radio/chemo and we are in 3rd week off. Yes due to start his chemo 5 rounds 21 days off for 6months. You are lucky to read and write so well. My husband can't talk very well and is so frustrated by this.
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