Sooooo, it’s been quite a while since I updated the blog and while there is a bit of procrastination involved, mainly it was because the super chemo pretty much knocked me out. Perhaps for some people this treatment works great, but my body was very vocal in its negative response.
I took the special treatment alongside my “usual” chemo for two cycles, and five months later I was still enduring the side effect aftermath. One of the worst things were the severe burns, one of which was 14” x 5” right across my stomach (yes, including the stoma area which made life very difficult for quite a few weeks) – and some of these side effects didn’t appear until a few weeks after the second treatment! For a number of months I hardly left the bed unless going to the bathroom or hospital for more tests or treatment.
My consultant approved a break in chemo over the summer as a scan showed my body was responding to treatment and the cancer was stable. This meant we got to the UK for a few weeks. While there things went wrong and a hospital visit discovered an infected cyst beside the colon. They treated it with antibiotics, but back in Sweden I was put in the hospital for a week and required a small procedure to clear out the infection. Now they are waiting to make sure the infection is completely gone before restarting chemo. The CT scan taken upon our return from the UK showed that during the hiatus from chemo, the cancer had become unstable again. I had another CT scan this week to check for infection, and if there is none showing, then I can expect chemo to start again in the next week or two.
I still can’t walk far. I can get to the kitchen but not stand for very long once I’m there, so I plan what I am going to make for supper carefully before I even start to go to the kitchen. We have bought a wheelchair, my warrior princess chariot, and this means I am no longer a prisoner in the house. Mikael can take me shopping, and for coffee. We used it in the UK and he would push me along to the harbour for coffee. I never thought I would see the day that I looked on a wheelchair as the key to freedom. It is frustrating, but after so many months of being unable to go anywhere, I am thankful for the possibilities this now opens up.
If I’m honest with you all, I confess to being scared at the thought of the chemo restarting. My consultant intends to use the same chemo that I had last session, and the rational side of my brain knows that it’s not pleasant but I can handle it. Unfortunately a little voice in my head keeps reminding me of what happened with the special chemo and how my life became suspended for months because of that. I won’t be having that special chemo again …EVER… but the fear of becoming incapacitated like that again lives on.
And currently, that’s how it is. My boys are healthy, the sun is shining, and despite my limitations, life is good and with the help and support of Mikael and friends, I continue to fight on.