Dear Jen…

Scans are continual, ongoing. Except of course when you’re stranded in Australia for 10 months and they’re all missed. But aside from that, there’s the chest X-rays every three months, and also the PET-CTs and my dreaded MRIs every 3-6.

People keep asking me ‘is the cancer gone?’ and I have no answer. The surgeons think they got it out, but they obviously thought the same last time, and here we are, on the cancer circuit again.

There’s no blood test to see if cancer is still there or not, there’s no way to know if there’s anything still hiding in there until it starts growing again. But we get the scans to hopefully catch it early if it does.

Some people anticipate, worry, panic, celebrate every scan. But I don’t have the energy for that. I don’t want to take myself on an emotional roller coaster ever 3 months, it would be exhausting. And I think it would also make it harder to take bad news if I’d made a habit of celebrating every single ‘can’t see anything ominous yet’ scan along the way. Who knows what the next one will hold, let’s just wait and see if I can manage to get to 5 years. Even that won’t signify ‘cure’ but it’s benchmark that’s often used for the likelihood of further recurrences being lower.

So I had my chest Xray the other week and didn’t really think much of it. I’ve had so many. It probably wouldn’t show anything, but if it did, we’d deal with it then. No point in assigning emotion to the unknowns. Osteosarcoma most often spreads to the lungs but if it originally presents in the jaw, local recurrences are far more common. TICK! Been there, done that. So that’s the one I’m far more worried about.
Lung mets (spread) from this time around would likely take a year or two to show up anyway. There’s also the fact that my friend had clear X-rays and still found out that she had lung mets and just a cheeky 100 tumours hiding in there, when she was admitted to Emergency unable to breathe. It makes you wonder about the efficacy of the Xray… But there must be a reason they do it.

But still:

The day before I got sent that, I read a quote by Leigh Bardugo that said:
If you’re always living for the next milestone, you may forget to look around and appreciate where you are. I had a friend tell me you should mark every bit of good news with a little champagne. Excellent advice.

I’d sent that to my friend Rosa (I send every thought I’ve ever had to my friend Rosa) and then I sent the X-ray info to my friend Rosa and we decided we’d drink champagne to it (neither of us had champagne but it’s the thought that counts), though I make a point of not doing the big celebration thing.

But she said: ‘It’s celebrating no new bad news’.

And I realised that’s actually quite a relief at the moment.

With so many of my friends getting so much bad news at the moment (myself included) it’s actually nice to take a moment to think ‘hey, look, you actually can get some news that isn’t bad news!’ and that’s worth raising a glass to, I think. Why not?
When scans and biopsies have been showing bad things all across the board, it’s nice to have something to remind us that there can be moments of respite too.

I’m in for general anaesthetic tomorrow. I’m grateful to have a friend who is taking on the task of coming to get me at the hospital and staying with me overnight. I have no real idea what I’m in for, I’ve had no new information about it. But I suppose we’ll see. I know my team will do what they need to do. I appreciate all the messages from people saying ‘hopefully they’ll be able to make things a lot more comfortable/better for you’ and while I appreciate the sentiment, I’m not sure it’s realistic. I need to manage expectations – they’ve just said they’re really having a look to see what they’ll need to do next. At this point I just need to sit with the fact that I’m in limbo. They can’t seal off the gaps to my ears, etc. so that’s not going to change until they start actually rebuilding. There’s no point in getting my hopes up for things like that in the meantime. I am, however, going to push for the plate to be screwed in this time, because that will feel like progress. That will feel like being knocked out and having my mouth pulled and stretched and torn again will not have been for nothing. I mean… I know it’s not for nothing in the long term, but it’ll be nice to know it’s not for nothing in the short term too.

The little things that make these moments more tolerable (if you can call it little) so that even the process of enduring can feel in some way like progress. But either way, this process is slow and we just need to take it as it comes, gently.

6 Comments Add yours

  1. tlj61 says:

    I don’t think I’ve ever read anyone as able to communicate so clearly exactly what it feels like to go through the hospital/cancer experience. You really have a gift, Jen, and I wish someone would give you a publishing deal and the resulting book given to every new entrant to the NHS. Hope the next procedure goes OK xx

    Like

  2. Laura Simone Owens (Laura Simone Yoga) says:

    Hi Jen,

    Another perfectly written description of what you’re going through.

    I find it hard to write honestly about my internal feelings, especially when they’re on the darker side. There’s such pressure to be ‘inspirational’ in this cancer world and it makes me a bit 🤮

    I’ve ‘temporarily‘ deleted my social media apps because I was getting myself into a bit of a hole. I can’t help but compare myself to cancer influencers and think I should be doing more, but I’ve felt so stuck with my words since my second diagnosis. It feels like a weight off not checking Instagram every 5 minutes or beating myself up for not posting. Silly really, no ones making me!

    Just wanted to say thank you for your honesty and transparency, it helps other people to read it as much as (I hope) it does for you to write it.

    Anyway, the purpose of me writing was to ask for your address because I wanted to post something to you (if you don’t mind)?!

    Don’t worry I’m not a crazy stalker, I live all the way in Spain 😊

    Wishing you so much luck and strength for the upcoming exploratory GA, and really happy for your latest x ray news. ‘No new bad news‘ is always a lift, even if no one else really gets it.

    With love and admiration,

    Lor xxx

    P.S. Hang in there, things will get brighter 💜

    @LauraSimoneOwens +34 633 713 918

    Sent from my iPhone

    >

    Like

  3. So eloquently spoken and shared. I love this reminder of the importance of living in the moment with cancer and between scans. Scanxiety is a real concern for many people but they way you have written this piece is enough to bring instant feelings of positive wellbeing. Thank you. I needed this and well done you! I am pleased to see your latest results.

    Now where is my champagne glass! Cheers 🥂❤️

    Like

  4. Pia says:

    Thinking of you, Jen. 💕💕

    Like

  5. Rob says:

    Good luck tomorrow & thank goodness you don’t have to spend another restless night in the hospital – maybe being in your own bed from the get-go will aid the recovery this time.

    Like

  6. Kirsty Disa Hopgood says:

    Celebrating all of the not bad news! It’s certainly a habit I have got into. Lots of Love Jen

    Like

Leave a Reply to Pia Cancel reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s