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.
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.