Posted on September 15, 2015
So, yesterday it was the much anticipated return to the chemo chair. Second line chemo, last real line of defence, so I had to have hope that this would work as well for me as it does for some other people and get me some good shrinkage, and stability for a while, so I could just, you know….get on with life. Took this photo of myself before leaving:
Last chemo was three week cycles, a few hours of infusion, 2 weeks of take home tablets, and a week off before I started it all again. The side effects were pretty ordinary, but I could manage them and lived a reasonably normal life. This regime however requires a 90 minute infusion, and then to come home for two days with a chemo bottle attached to a tube, attached to a needle jammed into a plastic disk, jammed into your chest. The bottle then infuses the chemo for the next 48 hours and you return to your favourite chemo unit to have it disconnected on day 3. I can honestly say I had already built up coming home with the bottle as being a pretty bad thing. If nothing else it is a constant reminder that you are sick, like every couple of fucking minutes, when you try to move somewhere and have to pick up the bottle and cart it with you. I have REAL issues with anything coming out of my body too, as I am sure a lot of people do, but it is nearly phobic with me. Years ago when I had a bone infection they inserted a picc line so that I could have antibiotics through a take home pump. I coped very, very badly with this, and was actually relieved when it caused a near fatal blood clot and had to come out. As soon as I come out of surgeries I start whinging straight away for catheters and drains and cannula’s to be removed from me…like, almost the minute I am awake the whinging starts. So yes, I had built up the take home chemo bottle and my reaction did not disappoint.
It all started out ok. I had talked myself through the way it was all going to be. I’m going to get on with living, remember? A new book to start, many ideas for shorter article pieces. Plans for maybe a TED talk and some public speaking around my book and the concepts contained within. Don’t you worry, I was just going to strap that bottle to myself, make those two days at home reading and writing and research days…work, live play for the other 9 days of the cycle, rinse repeat.
My chemo sidekick Anthony swung by to get me and we carried an almost festive mood into the chemo unit. When I whinge he tells me things like if they are still pumping drugs into me I’m not yet dead so I should just suck it up princess, and he entertains the staff and other patients with highly inappropriate jokes. I was glad he was there, and there was lots of chats with other patients, most of whom recognised me from 60 mins and wanted to have a chat about it all. Things went slightly downhill when I snavelled my blood test results from the nurse before Anthony could snatch them from my paws (as he had witnessed the resulting meltdown when I got hold of such tests before and read them). CEA numbers up quite a bit…liver numbers up just a little bit, but enough for my oncologist to reduce my dose to 75% and I took that very badly. How are we going to hit these bastards hard with a reduced dose from the outset. I start to smell the scent of people giving up on me, no one believing i can be one of those five year survivors anymore. If they don’t believe it, how can I?
The infusion finished, and the take home bottle got connected. I tried to make a joke of it at first, commenting to the chemo ward at large about it’s phallic shape and joking about carrying it around in my cleavage. When I got home though, my mood went downhill rapidly. I was sick of dragging the thing around all over the place, I couldn’t lie still comfortably, the weight of my boobs kept pushing all the cords on my chest up into my neck, and then I would doze for a few minutes and wake up with all this sweat pouring out of my neck underneath the tubes. No more than a few hours sleep in a few days due to steroids and I had a big dose of steroids yesterday morning through the drip, so I was a combination of dog tired, and wired and very very fucking pissed off.
As so, I lost it. Some time just after midnight I jumped out of bed and ran down the hall in a screaming rage. I punched walls and kicked them, screamed at an alarmed Gaz that I just wanted to die, and I wouldn’t be doing this treatment, there is no point when it is only a reduced dose. I was getting palliative care in to start writing the letters to my girls and start making memory boxes, I was telling my fucking oncologist that he could stick his reduced dose up his arse, I wasn’t having this bottle even one more fucking time. (This is not a personal attack on my oncologist by the way, he always has my best interests at heart and he would have reduced the dose out of concern for finding balance, it’s just that everyone was in the line of fire last night) There was no point in anything anymore. I told him as soon as I had set the girls up with their memories that I was going to commit suicide, and I’d do it right there and then if I thought we had a knife in the house sharp enough to deal the situation right then and there. Don’t think it’s the best night Gaz has ever put in…spare a thought for him going to work today on no sleep, won’t you?
Finally we went searching for the blue drops from palliative care. I couldn’t find them and that made me fly into even worse a rage. I finally located them in my handbag and took more than I should have, and laid down next to Gaz, and instantly started to calm a bit. I watched a bit of telly and finally drifted off.
Today is a new day. It’s not a good day, it leaves a hangover of grief and fear and the feeling that things are winding down. I can’t fight from that place, if I don’t believe, neither will anyone else. I am hoping I can convince the oncologist to give me a full dose next time. I am hoping I can get used to this bottle so three days out of every two weeks are not a write off from now on. I hope that I can find my will to live again tomorrow….maybe not today, but tomorrow.
I’ve rallied a million times already. I can do it again…..right?
If you are one of my fellow cancer fighting warriors, and you feel like this today, my heart and love goes out to you. We’ll be okay tomorrow…let’s just give ourselves today, ok? xx