I just can’t seem to get these updates written and posted as quickly as the blows keep coming.

On the day I found out my friend JB died – the lovely kind tall thin man who became my co-conspirator and partner in crime during my first Radiotherapy, where we could usually be found with our heads held close together, always chatting and swapping stories as we waited for our daily zapping – I also found out I had a hastily organise clinic appointment in two days’ time.

Anyone who has played the cancer game knows that hastily organised clinic appointments with an Oncologist shortly after a scan cannot be filled with good news. Yet me, ever the hardcore optimist, came up with reason after reason why it could be happening, refusing to acknowledge any possibility that it might not be good news. They had so recently told me that the scans were pretty much pointless now anyway, as no matter what they show, there is nothing they can do about it, as there is no more treatment they can give me. So surely they wouldn’t rush me in for an urgent appointment just to say the radio hasn’t worked so good bye and good luck. And like I wrote about recently, with the appointment where they told me the chemo wasn’t working – going in with no clue that was what they were going to say, and feeling blindsided by the bad news – the exact same thing happened again. They found a new way to completely shock me out of nowhere with more bad news.

How can I still not have learned? How can I still not be prepared for it?
But if I really think about it, I don’t think I ever want to be any other way.

I think perhaps if I ever get to the stage where I am only expecting bad news, I have either lost myself or it is truly the end. Or perhaps both. And anyway, even if I had taken time to expect bad news on that sunny Friday afternoon, I would not have been prepared for what they actually said.

I think it was my incredible friend Krista who wrote recently about the Cancer Bingo. Making a joke of it in a way, like I did earlier, referring to it as a cancer game. She and I are eternally doing our best to ignore the thoughts that might tell us to always expect bad news, and continually finding ourselves hoping for the best and making jokes about it all, even though we are deadly serious, because we are desperate to cling to the light and therefore ourselves, and each other.

So, in the latest round of Cancer Bingo, I am adding metastases to the list for the first time. Bingo!

There are three new tumours. One in my jaw, two in my neck. I now, for the first time since my diagnosis, have metastatic cancer. I remember my Oncologist once telling me that most people die from cancer because it spreads and eventually takes over organs and shuts everything down. But for a few of us, the location of the original tumour itself means we can’t cut it out, and it kills us where it sits before any chance of mets (metastases, ie spread). That was me. I suppose I should take that as a good sign that I have stayed alive long enough to get mets.

At least statements are a funny thing when it comes to cancer. Often quite a patronising and dismissive thing to be met with, a reminder to never complain, as someone out there will have it worse. I’ve written many times about how unhelpful suppressing real emotions can be, as well as any form of toxic positivity. But at least statements can also form part of our own personal coping mechanisms when employed internally (from within ourselves), and at the right time. Because clinging to any hope and gratitude is often what helps keep us going when there isn’t a lot else.

So, at least I have managed to stay alive long enough to get metastatic cancer… No, that didn’t feel good enough. At least… they were calling me in for some reason… Wait, why were they? I had been told in no uncertain terms that there was no more treatment for me. But apparently no one had banked on the thing I needed treatment for being something brand new… To clarify, it is still the same cancer, still osteosarcoma, still cropping up from the same old tumour wrapped around the bones in my skull, but three brand new tumours of it. And apparently that means they can zap them with… you guessed it (or maybe like me, you didn’t)… more radiotherapy! Still deep in the throes of recovering from my last lot, which I had only finished a month or two before, and I was being told we were going back again. Gratitude for the treatment being offered, but it was about the last thing I had been expecting. Yet here we were. One curveball thrown, and the next lined up…

…TKIs were officially back on the table. The exciting new treatment (a type of oral chemotherapy) that has been dangled in front of me for the last couple of years, but ultimately decided on being too much of a risk, given that it’s apparently killing everyone they give it to who has Head and Neck Cancer… and quickly. Now, that’s not the type of cancer I’ve got, but I suspect there are some similarities. And although my dear friend Krista has been on them quite successfully for years (managing her osteosarcoma that spread from her leg to her lungs), the only person I know of who had it for osteo in his face, only survived a couple of weeks after starting it… But it was treatment, it was all they had (a quick zapping aside), and they were up for giving it to me.

‘So…’ I said, somewhat bewildered by everything. ‘Do you no longer see those same risks?’
‘’There are always risks, I told you two years ago that you were about to die any minute and that clearly never happened.’
He made a good point. I was talking to Dr. A, my radiotherapy Onc. It was Dr. K who had given me the TKI ‘sudden death’ threat, and who I understood would be the one to give me the treatment. I asked if he was now happy to give it to me, given he had previously refused – were those risks no longer there or were we just dismissing them? Dr. A, ever my champion, just said that if Dr. K wouldn’t do it, he was authorised to, and would. He said his priority was to keep me alive as long as possible. Glad to know our goals align. I made a mental note to ask Dr. K more about that later.

We hadn’t made plans, not really. When deep in this cancer shit, it’s nearly impossible to make any sort of plan with a capital P. But Ma, Da and I living in my one bedroom apartment indefinitely, waiting for me to die, was not a solution. So I think really the only option we had, given my treatment here in the UK was to be  over, was that we go back to Australia. We had the option of coming back (either real or imagined) if something changed, but I think basically after I’d finished all my follow up scans and appointments, it was going to have to be time to say goodbye to my once-perfect life in London, which I had to keep reminding myself was no longer really available to me anymore anyway. I had been working hard to try and cultivate feelings of joy and positivity around this seemingly unavoidable future, but suddenly it was taken away with the offer of treatment.

‘I thought you were only going for a holiday,’ Dr. A said, as my brain tried to catch up. ‘Have this radio, go for a couple of months, then come back and we’ll start you on the TKIs.’

So much to think about, so much thrown into disarray yet again. Plans we hadn’t yet really made were already being pulled out from under us. But, we had a focus. Radiotherapy. Again. Soon. In a few weeks. Another mask fitting. But the whole thing would only last three weeks this time. I could do that. I would have to do that.

To quote Eddie Jaku from his brilliant book, The Happiest Man On Earth – ‘where there is life there is hope and where there is hope there is life’. I had three new tumours, everything had changed yet again, I had to go straight back into the treatment that felt like it nearly killed me, and I had to just go along with it. But I had hope, so I still had life too. And that had to count for something.