Round Two Update
Alastair's Adventures in ChemoLand Round 2:
Round two has been a little bumpy in the same way that round one was mountainous!
Chemo started on Thursday 27th July with a four hour drip of Rituximab the immunotherapy drug that acts like an antibody telling my killer T-cells to go attack my white cells. I think of every molecule as a tiny representation of Donald Trump, inciting my loyal T-cells to cause havoc in the capital (allegedly).
Because I'd never had this before and there's a 50:50 chance of some form of reaction I was placed in a bed 'near the oxygen' the nurse said. Also near the defib. and everything else needed in a crash emergency. Sooooo reassuring!
Four hours later it was time to flush the pipes with a half hour saline drip. It's a bit like a pub cleaning the pipes on a Monday after a busy weekend. I feel like an old Victorian pub, a bit run down, but still good for a pint and a natter. I may not be a young and trendy bar but at least my pipes are clean.
Fortunately no reaction! Other than boredom. Yes!
Then it's time for two hour of good old Bendamustine my chemo drug. Already an old friend that had wiped out my white cells to such an extent that I had no resistance to any infection hence sepsis in round one.
Nine and a half hours in total followed by a good nights sleep, Not! I had what I can best describe as a pseudo fever. All the shivering etc but without the temperature or the loss of cognition.
There's also the disruption of regular wee breaks every two hours throughout the night. No, not a long weekend in Edinburgh! Every wee break starts with drinking half a glass of water to keep the fluids up and flush through the nasty chemo cocktail. It also sets up the next wee break.
My sense of how hot I am has been an issue. I've seem to have lost the power to regulate my body temperature so I've developed the strategy of having three layers of covers on my bed. Bearing in my it's August,the bottom is a simple sheet, then the duvet, then the bedspread. Every few hours I'll adjust the layers like trimming the sails on a ship until it's perfect, then fling it all off for a wee break.
Day two of chemo was just an easy two hour drip of Bendamustine AKA Bend Me Shake Me Any Way You Want Me! Easier to remember. The nurses said they often just say the first part of the drug's name. If that's true, I've just been into town for a two day benda!
A second night of pseudo fever. (OK my temp went a bit high but it went down again)
Days three and four were icky, restless and uncomfortable but presented no real threat.
I've spent the rest of week one navigating the fine line between running loose and free, and being constipated. The anti emetic make you the latter so there's another pill to soften the blow. It would be nice to not have to take pills, just for a day!
I thoroughly recommend the chemo diet! With very little effort you'll lose pounds and pound and pounds!
At Christmas I was 15st 6lbs. Four weeks ago I went into hospital at 14st 9lbs. Today I'm 13st 11lbs, that's 12 pounds or 6kg! It could be the drugs, the sepsis, the ickyness, the disruption to my gut biome or the lack of alcohol but I really don't care, the fat has gone and I'll make sure it isn't coming back! (I've said that before!)
It's bizarre but I'm looking quite trim. I've lost that wobbly chin, belly and general flab. I still reckon there's a stone to go before I have to be concerned so I'll put that on the win pile for the moment.
So that's me up to date. In summary there's been a greater anxiety in this round, particularly around the immunotherapy and getting another infection. There's also been a shift towards anger in the form of frustration as the new and exciting, gives way to the known and boring.
Attack on Self - The psycho-babble bit!
I've found myself resenting conversations with friends that seem to revolve around my medical condition.There's no blame of criticism towards them and I'm as bad as anyone at making this the hot topic. Why wouldn't I? It's highly relevant to me, but it's only part of who I am.
By leaving other aspects of who I am hidden and inaccessible, the medical chatter becomes an attack on my sense of self,i.e. who I am. Imagine if all you were reduced to a pile of medical notes! Only weeks ago I'd be banging on about the intersection of psychology and dance. Now it's just chemo this and chemo that. I've noticed that now, there's little talk of my plans for the future, as if nobody, including me, can imagine a life beyond chemo. Perhaps that's the legacy of the big C taboo, 'Don't talk about the future, in case there isn't one!'.
Well there bloody well will be one for me and it starts at Christmas when I finish the chemo. 2024 is already tasting sweet like the anticipation of a holiday.Yes I'll be on the medical conveyor belt of tests and follow ups so the cancer story won't end, but there'll be time for Mambalsa and Salsa and food and writing and all sorts of pleasures to fill my time. Trust me when I say I can't wait!