Here we are again, day 14, the end of another cycle with cycle 5 beginning tomorrow. So how has this cycle gone? To be honest, not well at all.
To begin with, there was good news. When I got to day 1 of cycle 4 not only did I not need a blood transfusion, but I was told that I had a mutated gene. This means that Iam a suitable candidate for some kind of superdrug they could add to the chemo which has the potential of expanding my life expectancy up to a year. So from 3-5 years, we go to 4-6 years. Great news right? Cause for celebration. Of course, there are side effects, so much so that this superdrug comes with it’s own compulsory add-on antibiotics! Fine, for another year, we’ll take the antibiotics, a few more pills aren’t going to make much difference.
The problem has been that the tiredness brought on by the new combined chemo regime has made life as I knew it non-existent for the past 2 weeks. Here at day 14 of cycle 4 I am still unable to find the energy to do anything. Mikael has taken me out for coffee a few times, which has meant I walk a few steps to the car, a few steps from the car to the coffee shop, and then back home again where I collapse on the bed as if I had ran a marathon. Another of the worse side effects this time has been the amount of mouth ulcers which meanst it hurts to talk, and eat. Not being able to talk to Mikael, and more especially our boys (who like to debaate philosopjy, history, religion etc for hours) has been really hard, and despite the pain, I have still had to talk with mam every day for an hour otherwise she would speak to no-one and become more confused about things like what day it is.
So today we were at the hospital for the routine bloodwork ready for tomorrow, and told the nurse about what happened. I feel such a hypochondriac when listing out all the side effects I have had this cycle. She will talk to the Dr about it. I told her that if the superdrug gives me no life while it is being taken then there no point in taking it because without it I have 8 days out of every 14 when I can forget all the problems and just get on living a more or less normal life with my family. However, given that it may be doing some good I’m willing to compromise with a half-dose and see if my body tolerates that better.
I have to say that Mikael is a star. When he’s at home he’s in and out of the bedroom to see if I need anything and keeps the cream cheese and crackers coming. He’s also pretty much single handedly running the house. Despite the exhaustion, I have managed to do supper this past week, and that’s been a struggle, but otherwise, Mikael’s taking care of everything – especially me. I am so blessed to have him as my husband. I try not to be needy but some days, well some days he probably wishes he was somewhere else – especially when I ask him about the state of laundry room……!
In other news I bought a new toy for myself. It’s going to make such a difference to my stitching because it die cuts fabric. No more wobbly edges. I am so excited to have it, but I haven’t even had the energy to take it out of the box. Also another side effect has been that the tops of my fingers have been affected by the drugs – it attacks the skin so really I have been incredibly lucky not to have faired worse in this regard, but it has meant that I can hardly type never mind hold a sewing needle or crochet hook. I really hope we can do something with this coming cycle so that I be more productive.
I’m prepared for the worst though. I know that maybe this new cycle may be as bad as the last, and so I have Amazon prime video, and a number of TV series and movies already in my favourites box all ready to distract me if that’s the best I can do. Acceptance Katie, accept what is inevitable and move through it with as much grace as you can muster. Bright light at end of tunnel, only one more cycle after this next one, and then it is assessment time to see what improvement has been made. ?
Thanks to everyone who continues to support my journey. Your good wishes help get me through the rough days.