Ah, September, my once favourite month now horribly tarnished by the anniversary of being told that I was dying. It sounds so ludicrously dramatic and seems even more so now that nearly three years have passed. I outlived the prognosis and not just by a month or two but by years.
I know that many people point out that essentially we’re all dying and so really is my situation any different? Well, I’ve thought about this a lot and the reality is of course it’s different. Living with a terminal diagnosis is obviously a hell of a lot better than not living but despite the daily rejoicing that I am not in fact dead, living with the uncertainty of a stage IV cancer diagnosis is a challenge….
On top of the third anniversary on 24th September at the end of the month I shall be turning 40. It’s a busy month – less in terms of activity and more in terms of emotions and very mixed feelings. Milestone birthdays are always going to spark a certain amount of emotion but for me, turning 40, still feels like a miracle. I have no fear of getting older – my favourite quote – which sadly I can’t place, is ‘growing old is privilege’ and under the circumstances this is something that I believe with a passion. I realise that every time I really think about my 40th I feel quite choked up. For so long it was simply impossible. I’d been told I had months and not years and so best case scenario I might make it 18 months or possibly even two years but my 40th was due 3 years and 3 days after that horrid life-changing day and so I hadn’t even dared hope. In fact Claire and I considered the likelihood of me making it to three years so impossible that we joked that if I did (which clearly I wasn’t going to) the whole thing would be so embarrassing that it would be best to just pretend I’d died and instead I’d start a new life in South America which only my nearest and dearest would be made aware of.
So September has certainly given me a lot to think about. I have thought a lot about the truly awful number of friends and acquaintances who I’ve met either at The Marsden or through the online support group who have died. There are so many and I think of them often. Every time I go to the hospital I think of Linda and Jenny who I often met there and who were both on the same trial as me but neither got the ipi/nivo arm. Every time I swim I think of Mel who used to regularly swim her mile when all was well. On the rare occasion I push my self by running I think of the indefatigable Marie who just kept running and for such a long time seemed to stay one step ahead of the cancer. Whenever I step out of my comfort zone and into the realms of patient advocacy I cannot help but think of the inspirational Lori who fought unbelievably hard for the best treatment and better still vocalised that fight. I could keep on going, there are so many more who in the end, have not been as lucky as me. Melanoma is ruthless and the fact that I’m still here is in part down to making sure I was in the right place to receive the right drugs but it was also down to luck. I was lucky that I got the right arm of the trial and that I was accepted onto the trial in the nick of time before the cancer had done further damage. I was lucky to respond so well to the treatment and to then be in a position, when I needed it, to do it all again. In the end I just feel like that unlike so many others I am still here and able to spend precious time with my family and friends.
I feel now as though I’m hitting a bit of a limbo. The cancer simply hasn’t killed me as quickly as it seemed as though it would. Had I been diagnosed with stage IV melanoma 3 or 4 months before I was – it’s highly unlikely I’d still be here. The drugs were not as good and there were less options available so it’s highly likely that I’ve worked my way through what was there and would have run out of options months, possibly years ago. So in some ways I’m heading into that awful clichéd category of being a ‘cancer survivor’ but all it would take would be for my current treatment to fail and for me to not respond well to one, possibly two other options and once again I’d be facing months not years so it’s both premature and inaccurate to talk about surviving. Instead I’m in the total unknown. The drugs I’m on are too new for there to be any long-term data and there appears to be nothing at all on what happens to people who re-challenge and have the drugs again as I have done. Those around me often look to me for the answers but I really don’t have them. So I guess all I can do is to continue has I have been doing and just live in the present and keep my fingers crossed that there’ll be other Septembers to battle through in future years.