On day two of RT (radiotherapy), the door on a cupboard in the basement of UCLH got stuck. I know, I know, I wondered why I should care either. But apparently without the cupboard being accessible, I couldn’t have my RT. They tried and they tried to open it, they went and got the boss and she tried, the boss’s boss tried, but the cupboard only laughed. Apparently the cupboard was full of potions and elixirs and various things that might be needed in case something terrible happened while I was on the table. Only a few of us were risky enough to require the mysterious cupboard. After all that business of me being forced to sign that bloody Do Not Resuscitate order, which I had to do again this time (but it came with an apology and reassurance that no one would ever again be made to carry it around and hand the damn thing in every day like I had to last time), I didn’t really understand why I needed a cupboard in case of it all going wrong… But who knows. Maybe it had emergency plasters in case I stubbed my toe… But they were certain on the protocol – I couldn’t get RT until they got into that cupboard. Next, maintenance came in with some fancy tools. But still no success… After 3 hours of this, they decided they actually could just zap me without the magic cupboard. So zap me on a different machine. They finally did, and off we went to enjoy the weekend.

Two days into RT, Dad left. Just walked out one morning and never returned… WelL, not for about 5 weeks, anyway. And no, he wasn’t on a lost weekend, just hopped back to Australia to do some mowing and car registering and the like. A month with just the gals!

We started out strong. Before my appointment on that first Monday with just the two of us, we got the Uber to drop us at a nearby park – Gordon Square, where Virginia Wolf, and other members of the Bloomsbury group lived and met up. Our favourite seat (the newest one) was taken, so we went along to the next bench where we sat and did some Wim Hof breathing. I’ve been doing it for years anyway, but I recently read that it is a good practice to keep up through radiotherapy. We only realised after we’d finished that we had somehow got confused and instead of having 15 minutes to leisurely stroll over to the hospital, it was already my appointment time. So we walked briskly over, hoping we wouldn’t be too late. But it was fine. No one batted an eyelid, and I was greeted just as kindly as ever, making me feel like a VIP. However, due to the whole cupboard debacle, I had been moved to another machine – LINAC D. I was sad that I wouldn’t get to have L and P zapping me anymore, who had been so brilliant in that first session. But as soon as I met my new Zappers, they were also great, and we all sang along to The Beatles together. Everyone knew when Jen was in, because the Beatles were on, and they were cranked up loud enough so that everyone waiting in the corridor could enjoy it too. And you can guarantee that Clarence will be dancing, and I’ll be humming along through my mask, and possibly shedding a tear or two if one of the songs that moves me the most come on – like the song I want played at my funeral: I’ll Follow The Sun.
‘One day, you’ll look to see I’m gone, but tomorrow may rain so, I’ll follow the sun.’

Anyway, did I do that digressing thing again? Can’t help myself, can I? So we went to leave, and were told I had an appointment with the nutritionist that I had to wait around for. Groan. No one thought to tell me they were forcing that on me. I haven’t had the best track record with the hospital nutritionists. They generally don’t have much knowledge about… well… nutrition, and they always, without fail, tell me I need to make sure I eat a lot of ice cream. One went so far as to say I should be having it with every meal.  Their main concern is about calories. Whether or not you are in the camp of believing that what we eat affects us, and our health, or that it can help with maintaining cancer stability, I’m sure we can all agree that constant ice cream is probably one of the last things a damaged and recovering body needs. I remember on a previous time, mentioning my incredible smoothies that I make every day, packed with all the protein and nutrients I need, curated carefully to be pretty much the perfect meal, but all they could do was suggest I add ice cream to it. No way!
To this new nutritionist’s credit though, she didn’t mention ice cream. But I think I warned her off it early on when she asked if I’d ever seen a nutritionist before, and I led with this very anecdote to highlight my scepticism of the whole industry.
(I do actually have an external cancer Metabolic treatment specialist, who instructs me on dietary guidelines to follow, based on my cancer and extensive testing of my blood – fun fact, I have no hormones. None. No estrogen, no progesterone, no testosterone… Just none of them. Thanks chemo. I’ve not had a period since I started chemo in Dec 2021!  I miss them. (Hard recommend a book called ‘Period Queen’ by Lucy Peach).
Anyway, this nutritionist still made me sit there for ages, recounting every single thing I had eaten the previous day, down to minute granularity, and I felt much more like a naughty child who was in trouble, than an adult getting the healthcare she needs. (To be fair, I do own both a t-shirt with ‘Problem Child’ on it, and a mug with Little Miss Naughty on it….)

One of the many other random people who had decided to pile in on this meeting (yes, another crowded room) asked if my mouth was sore.
‘Well, yes,’ I replied. it’s all pretty fragile in my mouth where the denture is rubbing against my inflamed gums and lacerating them, as well as the open wound/huge hole in my face being pretty tender…’
‘Right… Well… Would you like me to take a look in your mouth? I can also get you some mouthwash…?’
I knew it was the best he had. He was talking about mouth ulcers, and I was talking about something way above his pay grade and understanding. But I couldn’t help myself –after saying that I already had mouthwash, and I didn’t have mouth ulcers.  I launched into a discourse about the whole situation in my mouth/face and how I was desperately trying to get this new surgeon guy to actually see me (he was proving incredibly elusive).
‘Would you like me to chase it for you?’ the nutritionist asked.
‘Oh! If you’re able to, that would be incredible!’

I didn’t hold out much hope with her being successful, but a few days later, an appointment appeared! Pretty much every appointment I’ve had with him has dropped off in one way or another, either by it getting cancelled via phone call by a secretary who shrugs and refuses to postpone rather than cancel, but promises to call me later (and never does) with a new time, or I find out that it was just never booked in the first place. And I’m continually left with no way whatsoever to make contact with them. So far, as well as this nutritionist, I have also had my psychologist, and my friends at Enhanced Supportive Care team chase up appointments on my behalf. I could spend hours saying that it shouldn’t be like this, but it isn’t helpful. So I’ll just throw out a hell of a lot of gratitude to the people who keep having my back.

While I couldn’t for the life of me seem to manage the appointment I so desperately needed, the strange appointments kept coming. If it wasn’t the dietician trying to see me weekly, it was Speech and Language, or something weird like ‘Head and Neck’, and although reception told me I couldn’t head home and needed to wait for it, they couldn’t tell me what it was or who it was with. I actually ended up saying no to the weekly Speech and Language one – I realised it was supposed to be about supporting me, not just ticking their boxes. And I wanted to get home and rest rather than sitting around waiting for some person to stare at me uncomprehendingly, then try to give me information that I’m sure we both realise is not actually particularly helpful.

So Mondays after zapping was the Dietician, to whom I had to divulge the previous day’s menu in full a couple more times, but felt I should put up with it since she had got me my appointment (isn’t it mad to think I’m attending a medical appointment to appease them rather than because I want or need it? Oh well. I guess the people pleaser is still alive and strong within me somewhere, no matter how much work I’ve done). Tuesday, someone from Enhanced Supportive Care Team dropped by to see me, which was welcome, and was more like catching up with my friends, who could also help if I needed anything. Wednesdays was supposed to be a check in with the registrar I think, though she tended to just catch me on the fly. She once materialised as I was literally getting off the zapping table, with an ‘all right Jen? Anything to report? No? Ok, I’ll catch you later!’ before she was gone. That one I’d wished had been a little less haphazard, as I probably did have a thing or two I wanted to run by her… And on Thursdays, I was meant to hang around waiting for Speech and Language, which I managed to decline. I wanted to be in hospital for the shortest amount of time possible. On days when we were in and out in no more than 30 minutes, things felt much better.