Posted on March 18, 2016
I have never known tiredness like this.
It’s a confusing trip when the very thing that is responsible for giving you a much extended life is sucking the life out of you. I speak, of course, of chemotherapy. I spoke to my oncologist last week about how my tiredness really seems to be increasing to a frightening level, even though my general cancer health is in a pretty good, stable place, with excellent liver functions at last blood test (basically you wouldn’t know from the blood tests that I had any liver cancer). He pointed out that I was just about to have chemo number THIRTY, and that is a lot of chemo, it accumulates, and he seemed to indicate that he didn’t think it was going to get better either. He said what a lot of people say I guess…that I have been a bit of a machine the last couple of years, and it was only a matter of time before the tide turned, and he was amazed I was able to function at the level that I did for so long.
I’ve toned things way down, because I have had to. But take yesterday for example. I decided to get into celebration mode for the week ahead, as I have been a bit down and looking for ways to pull myself out of it. So, I went to the shopping centre and took myself out for coffee and breakfast. I got a couple of things, came home, slept for 20 minutes, had friends over for coffee, slept for two hours until school run time, came home, got the kids a snack, slept for an hour, and then went into town to go and see a play with a friend. Gaz and the kids drove me in and they went for dinner, I joined them after the play, for dessert and coffee. None of that sounds particularly taxing, eh? All I am doing is sitting, talking to people, enjoying peoples company, which is important to me. But no, like I had run the Boston marathon, I slept in the car most of the way home. I don’t actually remember getting from the car to the bed, I remember Gaz waking me up in the car and saying we were home, and I stumbled inside, I think I pulled off my cardigan, but not any jewellery, and sort of fell face down on the bed like I had fallen out of a plane into a field. I slept until about 8.30am this morning and yet, I feel like I haven’t been to sleep – not rested AT ALL.
I know I have told you all of the dream that I have now. I am going to have one more chemo on April 4th I think it is, then we are hoping for a good scan that indicates that I can have the lung radiation and go on a chemo break for as long as possible – until we have signs of active growing cancer, basically.
I don’t know what I thought was going to happen at this time. Like I was going to just vault out of there and get on with life, do ALL THE THINGS. The way things are going, clearly I am not. I feel like I have cleared out the “dead weight” in my life already…..I have pared it right back to basics, already. My family, my friends, spending time with people I love. Trying desperately to take some of the pressure off Gaz, just be a partner and mum and friend again. That’s about all I got, but they are the most important things.
Don’t even doubt that I am grateful to be alive. I am grateful every day for still being here, and long may it continue. It’s just HARD is all, when you know your life is going to be short, and you desperately want to live and party like it’s 1999, and you realise you can’t, and never will be able to again. it’s kicking my arse.
I have so much compassion for those of you that have chronic health conditions that have meant that you have had to live and parent around this sort of tiredness for years and years. How have you done it? Anyone got any tips for me? Can anyone tell me that when I go on chemo break this might get a bit better, that I might be able to do a bit more? I am up for any advice, or kicks up the arse, whatever you feel I need.
Tomorrow we are heading into Huey’s diner to join a bunch of family and friends, to celebrate and give thanks for the fact that I will turn 45 on Good Friday. I’m so excited, and only hope I don’t have to crawl into one of the booths for a sleep!