Chapter 13: Chemo Brain 2: The Return of Forgetfulness

I forget everything these days. I mean EVERYTHING. In fact, I started this blog post 2 days ago AND THEN BLOODY FORGOT IT.

When I was going through chemotherapy the symptoms presented themselves as general mental confusion and fogginess and a lack of interest in just about anything that I used to enjoy. I found it difficult to follow conversations; especially if music or the TV was on in the background. It was like suddenly I didn’t speak English. I could see the mouth of the person who was talking to me moving, and sounds were coming out, but it just went straight in one ear and out of the other. Language error 404, not found. I explained to my friends and family that I was sorry if I seemed distant or moody, but it was scary feeling so overwhelmed by the smallest things like holding a conversation. I would find myself just nodding and saying ‘yeah’ and hoping that they didn’t realise that I had no clue what they were talking about.

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If that was ‘Chemo Brain’ the movie, this is the the sequel ‘Chemo Brain: The Return of Forgetfulness’.

Over the past few weeks, I have realised just how awful my short-term memory is now. I don’t have any problems with the long-term things like what my name is or what year it is (most of the time… I did almost put 2019 on a form a few months ago…) but the really short-term stuff I really struggle with. Every day I have pills to take in the morning and in the evening. Every day I get up and I stare blankly at my pill organiser (that has those compartments for the days of the week) with absolutely no idea what day I have just woken up to. I try to think about what I did yesterday or what day it might have been then and most mornings I come up completely blank. It’s like the previous day’s activities have been erased from my hard drive; just a black void where my memories should have been. I can only tell what day it is by using the previous day’s pills as a guide, and the one day each week where I wake up to a refilled pill organiser good old Google helps me out.

I have a million lists on my phone for things I have to do or to remember, and then I will set a reminder if it’s something that needs doing at a certain time otherwise I will forget. I can think of something important and in my head go ‘oh yes, that’s important, I need to do that’, but if something distracts me before I can write it down WHOOOSH, it’s gone. For maybe a few hours, maybe a day, who knows. It’s so frustrating. I know I’ve forgotten something that was literally just there in my mind but the harder I try to think of it, the more annoyed and anxious it makes me feel, so I try to just move on and hope it zips back into my head at some point.

The other night I was running a bath. The bath-tub is one of those ones that has twisty dial taps and a twisty dial for the plug open/close. I had both taps running. I wanted to stop the cold tap. What did I do? I opened the plughole and left both taps running. Did I sit on the bathroom floor for 5 minutes wondering why the bath was taking so long to fill? Yes. Yes, I did.

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Chapter 12: Chemo finito

I 100% have been avoiding updating this blog, so apologies for that, but it’s one of those sorry, not sorry moments. I just wanted a break. I have just checked and it has been nearly 7 weeks since I posted anything and there is one major difference now; chemo has finished. I could still honestly cry when I think about that phrase and how it makes me feel.

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So what’s happened in the last 7 weeks? Well, I had another middle-of-the-night trip to A&E for some mystery back and chest pain (I low key thought I might have been having a heart attack) but they couldn’t find any cause so after a mere 9 hours I was sent home. My last admission to hospital for chemo (or so I thought) then came earlier than I wanted (the next day). A miscommunication between various parties meant that my chemo was prescribed already and I had a surprise phone call saying that they had a bed for me (a whole three days early, lucky me) and so the final round began.

Day 1 Chemo
2 Chemo
3 Chemo
4 Chemo
5 Chemo
6 No chemo! (But 7th lumbar puncture boo 👎)
7 No chemo!
8 Chemo again…
9 2 units of blood
10 No chemo!
11 Fluids began in preparation for yet more chemo
12 LAST BAG OF CHEMO (and fluids)
13 Temp spike (surprise, surprise) so antibiotics started (and fluids)
14 Unit of platelets (and fluids…)
15 Fluids still going…
16 Yep you guessed it, more fluids
17 FINALLY ALLOWED HOME

So much easier than typing it out, why wasn’t I doing it in table form from the start?!? The last bag of chemo was the one I had serious anxiety about. It’s a drug called methotrexate and it’s given in one high-dose, 24-hour infusion and is proceeded by intense hydration for the following 4(ish) days until the amount in your blood drops below a specific threshold. And when I say intense hydration I mean it. I’m talking about weeing out nearly 7 litres in 24 hours. If you thought it was difficult to sleep in hospital ordinarily try having to get up every 2 hours to piss like a racehorse. But that’s not the reason I was really dreading it, it was because it nearly always causes mucositis which, in case you can’t remember from the last time I had it, is “painful inflammation and ulceration of the mucous membranes lining the digestive tract”. Just think about those words for a second. Think about where the digestive tract starts. And where it ends. And now imagine ulcers in all those places. Yep. V̶e̶r̶y̶ ̶p̶a̶i̶n̶f̶u̶l. Complete and utter agony. It was actually worse this time, which I wouldn’t have thought was possible and lasted 2 whole weeks. Two fucking weeks (pardon my French). All I ate was ice-cream and soup for 2 weeks. Swallowing felt like shards of glass and for 3 days I couldn’t talk. Oh, and my nose bled all the time because there were ulcers up there too, so that meant two more units of blood and another unit of platelets. I also had to have my 8th and final lumbar while feeling totally pants, but I was ecstatic that they were all finished and that I wouldn’t have to have any more. I hope you never have to endure one lumbar puncture let alone eight.

If you’ve not experienced chronic pain that lasts for a substantial period of time let me tell you it really tests you as a person. After I was discharged from hospital I still had my twice-weekly clinic appointments at my cancer unit and they could tell instantly just how much pain I was in and how utterly shite I felt from my demeanour, and surprise, surprise I ended up back in the hospital again after another temperature spike #frequentflier. Three days of antibiotics and I was sent home. FOR THE VERY LAST TIME.

I have one more day of treatment left in six days time. It’ll be my 8th and final dose of rituximab, which is the chemo-that-isn’t-really-chemo stuff. It’s that immunotherapy/target therapy drug that tricks my own immune system into hunting down those pesky cancer cells and unceremoniously evicting them from my person. Although the nasty stuff, the real chemo, has already finished, next Thursday will still be a pretty momentous occasion; the last treatment. The last time chemicals are pumped into me. They’ve even said that they can take my PICC line out (consultant permitting) as soon as the infusion is finished so I can finally be less Borg, more human.

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Addendum: my consultant’s name is Dr Borg which as a Trekkie has pleased me greatly.