They say it’s your birthday…

I turned 35 on Sunday. 35! What a glorious thing!

It wasn’t long ago, before I started radiotherapy, when the Oncologist and everyone associated with my care was obsessed with telling me they thought I would die any day, that it felt like turning 35 wouldn’t be available to me. That I wouldn’t see another year. Yet here I am, booking flights to Australia for Christmas, buying my diary/planner for next year, and turning 35. Wow. It feels momentous. Iconic.

I had a fairly quiet day – my album launch was a tremendous night but it was big. So having already thrown my huge party for the year, I opted for not doing much this year, just a swim and a roast.

A swim in the Hampstead Heath Ponds, when it was 5 degrees out and 7 degrees in… Must have been warmer in the water then, right? Positively balmy? Nope. I don’t know why water feels much colder than air, even at the same or higher temperatures, but it does. Physics and stuff…

I was in my trusty wetsuit, boots, gloves and beanie (my awesome new ‘Parliament Hill Lido’ beanie, courtesy of my swimming partner). My dear friend Nat was in all of the above minus what I think is the most integral part – the wetsuit. Yep, that’s right, she went in wearing just a swimsuit. But a brilliant one, with sharks on. We marvelled at the fact that three years ago when we did the traditional birthday dip, it was 4 degrees in and out, so this would be eassssyyyyyy. Easy like Sunday Morning.

It wasn’t. We swam three laps that time. But were happy to call it quits after one yesterday. That’s fine, I’ve got nothing to prove to anyone. I must say though, when I got over thrashing around trying to expend as much energy as possible to try and get warm, and saying over and over again like a mantra through chattering teeth ‘It’s so cold’, I actually started to get used to it. Perhaps… Enjoy it?

The rest of the Sunday morning was easy though. We wandered through the Heath, taking photos and touching trees, before we stumbled upon a ‘Christmas Fayre’, which had a Merry-go-round that we just had to go on. We rode it with smiles threatening to stretch off our faces and go take up their own horse. We giggled and took photos and had the time of our lives. I yelled ‘What a time to be alive’ approximately 6 times. And it was.

Then a roast at nearby pub on the edge of the Heath, and some glorious presents and many laughs and a few tears with some people I love.

I couldn’t have asked for a more perfect day. I really felt the magnitude of getting to turn 35. And hopefully, to stay stable long enough to make it to Australia for a month.

It had been a bit of a palaver organising this Christmas trip to Sydney – I spoke to the radiotherapy Onc a couple of weeks ago who said ‘I heard you’re thinking of a trip to Australia for Christmas. When do you need to book it?’
‘I may have already bought tickets…’ I replied. ‘But they’re flexible…’
Come on man, it’s Christmas. I can’t leave it to a week before to buy tickets. But yeah, we won’t have any scan results by the time I fly – PET Scan last Thursday and MRI today (nice scans book-ending my birthday. Joy.) which is scary, sure. But sometimes you just need to get on and do things and hope for the best. And boy, am I hoping.

I later spoke to my pain team of dreams, who mentioned it was great that the Onc was happy for me to go, because he’d been worried about me flying before, with the rapidly expanding tumour apparently being ‘high risk’ of killing me at any moment, but since he’s ok with it, everything must be ok now.

This of course immediately triggered an amount of panic – there was a perceived risk to me flying? What? Why did no one tell me about this? And him being ok with it now isn’t based on anything other than me saying I’m going – no results, just me being in less pain since the radiotherapy started which is a very useful indicator, but also not solid…

I had been worrying about whether I would stay well long enough to get to Australia, and bought flexible tickets so that if it starts going downhill while I’m there I can come straight back. But now I was worrying about it getting worse while I’m there and being told not to fly. What then? What if I never made it back to London? Was going to Sydney for Christmas perhaps going to be the end of my London dream? And it sounded like if I did get back to London and it started getting worse then, I’d have no chance of going to Australia to die, if that was otherwise available. ARGH!

It was a long week of trying to work out what I was meant to do. But the truth is that no one knows. Even the ‘experts’ have no idea anymore. I sent an email to my team trying to work out what the risk was, whether there was anything I could do to lower it – a course of steroids perhaps… Something, anything. And they told me they saw no greater risk to me being in the air than on the ground and to go enjoy my holiday.

Right… well… OK. I guess there was just a bit of misunderstanding and miscommunication fuelling that episode of stress. Ok, ok. Got it. So we fly (if we don’t go downhill before).

In the same email asking about the flight risk, I asked about the TKIs they’d apparently started applying for. It’s scary now that I’ve finished radiotherapy and although it seems to have worked (which seems to have shocked them to no end), we’re currently just watching and waiting until it gets worse, then we might do something. Something that they don’t think will work, of course.

Actually, I’m not sure if I mentioned that, but after about 2 weeks of radiotherapy, the pain started to plateau, then eventually taper off. I’m still on a lot of Oxycodone, but at my request we’re slowly knocking the amount back to see how much I can go down by. It’s not great stuff to be on, and I’m scared of masking the pain of it progressing again, because I’m the only indicator of it happening.

‘We cancelled the application for TKIs,’ said my CNS, having called me in response to my email.
‘You… what?’
Yep, they’d gone ahead and cancelled the application to get them for me. Without telling me, of course.

To be fair, the way they triggered the application was weird. I’d asked about TKIs and chemo back when I was waiting for radiotherapy to start, not knowing how long it was going to take and the RT Onc had said ‘there’s a high risk of you dying any day now, maybe you should have a round of chemo while we wait for the radiotherapy to be ready.’
One of the CNS nurses had said ‘we can apply for TKIs for you to take while you’re having radiotherapy if you want…’
To which I’d said: ‘if I want? I don’t know, isn’t it you who should be telling me what treatment I’m having?’
So they applied.
And then they cancelled the application.

As she’d said when she broke that news to me in a small, quiet voice, we should take the wins where we can and ride the RT stability for as long as it exists. Which I get, it makes sense, and I am actually glad to be able to rest my body and build it back up after all that zapping. But cancelling the application without bothering to tell me is absolutely insane. Making decisions about my treatment without involving me in it at all… I really just am a job to them, aren’t I. Not a human. One of many on the production line of cancer patients. At least that’s what it feels like.

So now we’re at ‘wait until it gets worse, but we already think it’s at high risk of killing you, and the only thing we have to throw at it is TKIs, but the application takes a month or so, so you’ll probably be dead by the time we have to actually do anything, but if you do get them we don’t think they’ll actually work, and the side effects are horrible…’

So I’m jumping in freezing water and going on merry-go-rounds and shouting ‘what a time to be alive’ and turning 35 and seeing my friends and doing the final edits of my novel and enjoying having my album out and planning to board a plane to Sydney to get some sun and enjoying being stable for the moment, because that’s bloody brilliant. Always, always searching for that magic.

11 Comments Add yours

  1. Tochi Balogun says:

    Happy Birthday, Jen! Here’s wishing you a lovely and enjoyable holiday in Australia and I hope to read from you again in the new year because you’ll still be strong and doing all the lovely things you enjoy! You’re awesome 👍🏽🙌🏽🙏🏼🥰


  2. Kirralie says:

    The pond swimming…The merry go round rides…Booking the flights to Oz for Christmas. I’m admiring your choices ❣️ And what is life, but a series of choices!
    I would love to see you when you’re here in Sydney Chickka 🫶


  3. Km says:

    Thank you for your blog. The honesty is so helpful. Have a fantastic trip.


  4. Tricia says:

    Another great vlog , you are truly amazing never forget . So get on that plane girl and enjoy. But why oh why do they make it hard for you at times Merry Xmas xx


  5. Jess says:

    They cancelled your what? Now what in the devil would make them do that?! They need to uncancel it pronto – they didn’t think RT would work and it seems to have helped. Why can’t they have a potentially great treatment ready up their sleeves for you ready if/when you need it? Surely it needs to be what *you* are willing to try & take on – not their bureaucratic nonsense. How many stroppy Australians do they need to sort themselves out? Raising a glass for you & your fabulous birthday celebrations too ❤


  6. Selina says:

    Happy Belated Birthday! I went swimming in Hampstead ponds over the summer for the first time and thought the water felt cold so you’re hardcore doing it now : )


  7. Sheila A says:

    I hope you have a lovely time with your family and friends. You certainly don’t let things get in your way!!
    Best wishes. Sheila


  8. claire93 says:

    happy birthday Jen! Total madness to go swimming in freezing water, but if that’s what floats your boat ^^
    Hope travel plans (& health) all work out so you can be with your folks for xmas, and back to London early 2023.


  9. PJ says:

    That part “just a job to them . ….production line of cancer patients … ” could have been MY words exactly ! I am keenly aware , when and if , one of the care team steps, even a small step, towards friendship with me , it’s almost as if they don’t WANT to get caught up in the caring because that can cause pain to them down the road /


  10. Eva Meland says:

    Happy belated! Your birthday sounds great, apart from the swim which sounds ghastly. And heroic. Wonderful news that you’ll be in Sydney for Xmas! Will you be performing some of your songs? Gorgeous weather here now.


  11. Glyn says:

    Happy belated Birthday 🥳 you look only 25 you sure you got that number right 😉
    So happy you’re getting over to Australia – get the beer and wine chilled out there 🍻🍹🥂🍷🎉💕


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