If You Want To…

So I have these ‘treatment reviews’ every few days listed on my schedule. My paper schedule that I must not lose, that they keep adding to each Friday with my zapping dates for the following week. The wording on my schedule says ‘we will aim to see you prior to your treatment in the head and neck within the Radiotherapy Department, please arrive 30 minutes prior to your appointment time.’
They are scheduled for twice a week and… well… I turn up early, but they keep not happening.

I spoke to someone who I thought was introduced to me as my main contact through radiotherapy and I finally managed to track down her email address. I asked about these reviews and she said they would happen, just before my zapping and she had no idea why they hadn’t happened (even though she also said that she was the person who was meant to be doing them). She said there was nothing I needed to actively do, they would just grab me while I’m there. Cool. I’m also meant to get a call every Thursday, another sort of treatment review thing, that will happen any time between 8:30am and 7:30pm. Except that, of course, it never happens. And, apparently, when I asked my radiotherapy contact person, she said oh no, it’s actually between 8:30am and 5pm. Of course, yeah, why wouldn’t it be written wrong on the schedule. Not sure what I was expecting.

On Friday a couple of weeks ago, during one of my regular check-ins with my Pain-team-of-dreams, they mentioned I had an appointment at 9am on the Monday. No one had told me about it, of course, but apparently it was in my app, which like… I don’t spend my time looking at unless there’s some reason to. She said she’d send an email and see what it’s about. Only, she asked my original group of nurses and I’m not sure they’re really up with what’s going on with radiotherapy, I don’t think its their area.
‘Oh yes,’ they said. ‘It’s her treatment review with the head and neck team.’
So this information was relayed back to me with the advice that I really should attend it.
‘Wait, so it’s just my ever elusive treatment review? Oh well, I’ve been told that I’m just supposed to turn up a bit early and they’ll find me.’
I overheard the radiographers actually telling someone else that the timings on the app aren’t accurate, they’re more of a placeholder. We get given our actual times on the Friday, ahead of the week, once they’ve worked out the scheduling.
We decided that turning up two hours early didn’t make sense, so I just went along as usual. But I thought I should maybe just enquire into this treatment review, in case I was in the wrong place or should be doing something different.

So I arrived on the Monday and checked in at reception as usual.
‘You can go down to machine F,’ he said, as they always do.
‘Thanks,’ I said. ‘Actually, I was wondering if I could ask you… it says on my schedule that I’m meant to have a review today? Before my zapping?’
‘Oh ok, cool.’ He said.
‘Is there… somewhere I’m supposed to go for it?’
‘Oh, well, you can wait out here if you want.’
‘If I…’ I looked at him, trying to work out if I’d missed something.
‘Well, is this where I’m supposed to wait?’
‘If you want to, or you can go down to your machine.’
‘But I… Is this where I should wait for my treatment review?’
‘Sure, someone will come and get you.’
‘Ok… thanks…’

So I waited in reception. After about 20 minutes, my normal radiographer came and called my name. So I followed her down the long corridor while we caught up about our weekends, and she walked me down to my normal waiting spot at machine F and said it would just be a moment, she’s just waiting on her colleague to start the zapping.

‘Oh, ok, cool,’ I said. ‘But um… what’s going on with this treatment review?’
She seemed kind of confused and said she’d ask her colleague about it. I then went and had my zapping. After, she waved me goodbye. I was tempted to just leave and let it go, but I’m apparently persistent. I didn’t even particularly want the damn thing, I was just worried they were waiting for me and I wasn’t where I was supposed to be.
‘My… treatment review?’ I asked.
‘Your what?’
‘This treatment review thing that I’m supposed to be having twice a week…’
She said she’d hunt down a colleague and see if they wanted to see me.

Finally, a colleague came and got me and took me back out the front to a little room off the side of the main reception. She said that there was no harm in having one, since I seemed to want one. Which believe me, I didn’t. She just asked how i was feeling and how things were going. I said I’d found the first two weeks absolutely exhausting, but I seem to be in a routine now and I’m feeling better. It even feels like the pain and swelling has stabilised, so I’m hopeful that means the radiotherapy is actually doing something and keeping it a bit in check. but of course, they can’t say whether there might be any truth in that, as it takes it least four weeks it to start working. And they don’t expect it will. Yes, yes, ok.

So it was nice to meet this nurse and chat with her, she explained that they’re often in the room looking at me when I’m being zapped, I just don’t see them because they’re over in the safe side. But that if I have any concerns, just to raise it with my zappers and they call one of them for a meeting. Ok, great to be given this information half way through. This approach suits me SO much better though, than them trying to micromanage me with three reviews a week. I just want to get on and do it, not talk about it all the time. I want as few appointments as possible. I’m glad to know they’re there if I have an issue, but otherwise, let’s just do our own thing and get through it.

Oh, I’m half way through, by the way. Just over, in fact. 17 out of 30 zaps in total. Two were missed, one for the queen and one when my lil (big) Zappy machine needed a service, which will be caught up at the end so I think October 21 is the last one, unless something else gets in the way. I imagine Charles will hang around for a bit longer yet.

The other weird thing that i was lately told was ‘if I want to…’ was to do with what treatment I have next. Or… now. Back when they were deciding whether i would have radiotherapy and when, it was realised that the waitlist was too long, and that it was unlikely I would live to get to it. They’d talked about perhaps wedging in a cycle of chemo while we waited, to hopefully keep it in check. But then I just didn’t hear anything.

So I sent an email that basically told them I’m scared with how quick it’s progressing, and pleaded with them to not let me die while I wait for the treatment that’s available to me. What about a cycle of chemo in the meantime? And also, what about these TKIs I’d heard so much about but no one seems to mention until I specifically ask for them.
The answer came back that they’d managed to get me in for radio quickly – 3 weeks – which, they say, I should just be grateful for because the NHS are over stretched and some people are having to wait 2 months. I understand why they said this, to show how much stress they are feeling under, but this isn’t really great information to put on a patient who is just trying to stay alive. I understand that the NHS is struggling, but I don’t need to be reminded of it in a way that feels like i should be feeling bad for trying to advocate for myself and trying not to fall through the gaps. Anyway, three weeks was good and didn’t leave them time to sort our nor administer chemo in the meantime so we were probably doing what’s best.

When I’d pushed about the TKIs, the response was another odd one I hadn’t been expecting…
‘We can apply for them on compassionate grounds for you for while you’re having radiotherapy if you want to.
To which I threw my hands up in the air, asking whoever might be up there why whether I get access to my care and at what stage of the process it happens, is reliant on when I want it. Do the experts not like… know what should happen…?

The last thing I’d heard is that they’d applied for them for me… I guess I’ll have to keep asking on an update because I’ve certainly not been given one. But of course I have no idea whether it’s something I should be taking alongside radio, or after, or what. This is what I want who I’m told are one of the best teams in the world to tell me.

Anyway, I had a catch up with my dear friend Krista, who is the incredibly unique combination of Doctor AND Patient (and is just generally brilliant in every way), and is the one who is one of the first on these brilliant TKIs, which appear to be working wonders for her. Lots of accompanying issues and side effects too, but oh boy, is she living, and much past what they’d once forseen for her. She said the one she’s on, which is the one they’re requesting for me, is used in the niche circumstance where the tumour is growing towards a blood supply. Which mine is – that’s that big ol ‘it might squash your interior carotid artery any day now and you’ll drop dead’ business… This TKI is specifically meant to help in that case. So… am I getting it???
I guess we’ll watch this space. With me poking them every now and then and asking what’s going on…

If I’ve not heard more about it by the time I’ve finished radio, I’ll start poking them again.
If I want to…

2 Comments Add yours

  1. Annie says:

    Hi Jen


  2. Annie Payne says:

    Hi Jen
    Thank you again for sharing
    What a difficult role you have owning all your responses and how too respond to others and their Quality or not quality of care and treatment.
    I think maybe feeling justifiably angry is normal for yourself, others and your universe.
    This process may pass a little if you stay in touch with the other part of you Jen, I’m sure that will happen along the way.
    It’s normal for your emotions to keep turning.
    Mum Jen soon will be there soon.
    All yoga girls and me Annie (ex Nurse)
    Hugs even more go with what ever you have, aloud.
    Annie P


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