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Part 4. Fun chemo chat

MRIs are fun. Especially when you have to lay face down with your head in a hole and your boobs in giant cups pretending you’re on a (crap) massage table . The ‘relaxing’ music was completely drowned out by the roaring, screeching, beeping and shuddering as I lay in a small chamber breathing as deeply and rhythmically as possible. I counted (to about 850) and thought I could be in an episode of Black Mirror, which will come to mind again as you’ll see. When it was over I told the very lovely staff it was the shittest spa experience I’ve ever had. Fortunately the lovely Di was with me and the whole thing was all the better for her amazing #KnightsArmy company!

On Monday (12th Feb) I had my little chit chat about all things chemo at the Sussex Cancer Centre. It does exactly what it says on the tin. What’s fab is that my beautiful, naughty, funny mate Anna is an important person on that chemo team and she and I had already got the shit conversation out of the way about the fact that I’ll be seeing more of her but not in the usual fun way – at hers with the gin trolley, the fancy dress and the gurning selfies. We’re bringing at least one of those things to this new ‘party’ though, see pic.

Well, it might not be the usual forum for our kind of fun but boy did we give it a good go. Anna came and found me and mum in the waiting area where we’d grabbed a cuppa and a knitted headband to try on (cover the greys and later some bald patches). Anna loves a dress-up so there was immediate appreciation that I’d popped one on. I avoided the wigs save only to lift the worst I could find and make a lame joke that it would be the one.

Anna took us in to what could be a kids play area if one removed all the drip lines filled with poison. Multi coloured wipe-clean arm chairs in attractive hues of purple, blue and lime green are dotted around in snug little areas. I imagine a two year old having all the fun climbing, sliding and tumbling (need some mats down too), and one could simply follow behind with a wet wipe (coffee in hand because that’s the only perk of being in a kids play area other than them being distracted for a bit) for the drool or snot moments (kids have lots of both). God that’s a lot of brackets.

Anna had notes and I expect she usually has an order of ‘business’ to follow. Not knowing Anna as well as I do, mum had an air of slight anxiety about her – why wouldn’t she, who wants this conversation ever about their child! That was fairly quickly gone when whatever order Anna might have had was completely thrown by me talking to her like I’d just got her house for gin action – sort of!

We started ‘light’ with Anna bringing over a fetching purple skin tight but thick, soft riding helmet with a long, fat tube of the same colour dangling from the back. “Here’s what a cold cap looks like. We only have a few sizes and it’s got to be really fucking tight anyway so that it’s touching your follicles”. That’s not me directly quoting Anna. It’s just me quoting what I think she might well have said. For those blissfully unaware (good for you!), a cold cap can be worn during chemo to preserve the hair. It works by actually freezing the hair follicles so if you use one, you kick start a chemo sesh by wearing it for half an hour before chemo, during which you’ll have the delight of around 10 minutes of brain freeze. Like you get with a greedy mouthful of ice cream only for 10 fucking minutes! Apparently it settles down after that, then you get to sit there like someone out of another(!) episode of Black Mirror for an hour and a half more while it carries on freezing your head AFTER you’ve had your chemo treatment. Fuck that for the following reasons: I hate being cold; I’d really rather not add 2 hours to every one of my 6 visits to the multicoloured swap shop; I know the more I’m tampered with the more of a big deal everything will feel; I’ll look more hideous than I’m potentially going to anyway; it doesn’t save all the hair so I’ll still be covering my grey patchy head (can’t use dye); and I have bigger probs than being temporarily hairless.

Now then, don’t get me wrong, I’m down with the folks who choose to do this. Hair is a huge deal and plays a big part in our sense of identity. I’m just choosing to play with my identity though a shared love of dress up by using wigs instead for a bit. And boy do I intend to play. Might as well get whatever joy I can from hosting these two gruesome guests!

We moved on, not so seamlessly for all the giggling, to the chemo itself, accompanying drugs, some of which I need to inject myself with daily (eeek), and the likely side effects. Oh, and the less likely ones like melting in to a massive toxic puddle of steaming neon waste (to match the lime chairs). Anna didn’t mention that, obvs, cos it’s not a thing. We talked about diet, sugar, alcohol etc. most of which aren’t really on my radar as I’ve gone all green-health-freak on myself. Of course I had to ask about the odd glass of organic red and the summary really was that it’s all pretty irrelevant as nothing can be as toxic as what’s about to get pumped in to me. Anna asked if I’m ready to which replied, and I can quote this time, ‘fuck, that get that shit in my body’. Mum and Anna had giggling fits while I opened my mental week-to-view in readiness to diarise chemo o’clock.

Highlights (?) also included discussing the need for only tentative nose picking from chemo o’clock onwards due to softened capillaries. There seemed to be a consensus on the need for a ‘vigorous exploration’ from time to time and that for me it will now have to be a gentle one. I might not have any nails left anyway so I can’t be a huge danger to my nose.

More of a concern is the ‘foggy’ brain chemo can induce and I noted I’d already started going to the fridge for the ‘Gary’ instead of the milk, such is my exhaustion following this whirlwind. I don’t know why I said Gary because I haven’t actually called the milk Gary, but it was the first thing that came to mind. Maybe because my pod-buddy at work is Gary and I love him (he’ll HATE me saying that. Tough, I’ve got cancer, suck it up Gary). So after more pissing ourselves at my random idiocy, which was noted by a lovely man in his final stages of chemo beside us, it was decided we’d better refer to such foggy moments as ‘having a Gary’. That quickly moved on to me just being called Gary. All this audible in a room with people being blasted with chemo. Lovely man next us just joined in.

Anna, sharp as she is, knowing the hair loss scenario isn’t just on the head, suggested there’s a more private way of her and our crew showing solidarity, which she demonstrated with a swift wave of the hand in the ‘area’ as she exclaimed, ‘Gary’s Baldies’. We didn’t share that with the man next door but it’s now a thing. I won’t be checking, I’ll just trust that its happening. Obviously I’ve added actual garibaldi biscuits to the shopping list ahead of Round 1 which is at 10am on Monday, 19th Feb.

Bring it bloody on. My tit hurts and is big, swollen and looks different. Sleeping is tricky, I think for many reasons, and one can’t help but wonder where Lumpalot and Lymphalot want to go. I think like me they like to travel, expand their horizons. Like mother like tumour.

On Tuesday the lovely Di, leading from the front of the army with several others, came and did what we’d discussed and she’d researched. She cut my medium length hair in to a slightly graduated bob in preparation for it inevitably falling out. It is inevitable with the drugs I’m having. I like it and so does everyone else apparently – unless it’s pity party flattery! Maybe it’ll be the thing when it grows back.

Here’s a before and after. It’s also screams before and after of winter skin. I think pasty is exacerbated by an insta filter but still, jeeeez!

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Finally, I went through the not-so-fun experience of having a picc line fitted Friday (16th Feb) morning which sucked a bit, but it’s done now and means no more needles, all being well, for chemo. Jenny, not mum – she was there too somewhere under a pile of tissues, prepped me by putting a plastic sheet over my arm. She was wearing scrubs and I was mainly looking the other way in the direction of the beautiful, young Italian nurse holding my right hand. Correction, I had my eyes shut and was counting again – trying to focus on my breath. I asked Jenny if she was reenacting a scene from Dexter which was lost on the room. I explained it’s about a man who likes killing and chopping people up and there’s a lot of plastic sheeting involved. That was an ice-breaker, I think.  Anyway, a picc line is a cannula that stays in my left arm just above the elbow for the next 18+ weeks. It feeds a tube right in to my chest through a vein. Gross. Any blood needed comes out of it, any poison goes in to it. Job done. And so it begins… chemo Monday, a ‘marker’ placed in the tumour the following Monday – so they can find it when it doesn’t exist any more (!), and a CT scan Tuesday 27th.

The army, organised by Captain KP and I are in position and so is the plan to visit the newly discovered Brian Eno room at the Horizon Centre where I’ll sooth this already fairly zen mind.

new insta account is @queenemmaknight for all things positively triple negative. But it won’t always be positive.

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