I'm going to empty my head into this post so do feel free to skip it.
After dwelling once more on what bloody stage of cancer I have, I decided to just ask my Macmillan nurse, Rachel. She concurred that I am stage 3c, not 3b. Here's everything you need to know about stage 3c in a nutshell:
Stage 3C means that there are melanoma cells in the lymph nodes and small areas of melanoma cells in the skin or lymph channels close to the main melanoma....Between 20 and 34 out of 100 people (20 to 34%) diagnosed with stage 3C melanoma will live for more than 5 years. Between 11 and 29 out of 100 people (11 to 29%) will live for more than 10 years.
(from Cancer Research UK http://www.cancerresearchuk.org/cancer-help/type/melanoma/treatment/stages-of-melanoma and http://www.cancerresearchuk.org/cancer-help/type/melanoma/treatment/melanoma-statistics-and-outlook)
So that's fairly shit. An average of 73% of people don't make it beyond 5 years of diagnosis. Yes, I know, that's not exactly what it says, and none of us are statistics and look on the bright side. But I don't feel bright. I feel angry to be living on death row, never knowing whether I'll get a reprieve or the lethal injection.
Recently, I decided to find and book our dream holiday. It will be on the beautiful Seychelles, away from everyone and everything. Surrounded by nature, blue sea and sky, with the chance to snorkel with bright fish, lie on a hammock and read whilst drinking a cocktail, and experience true relaxation. Only, ironically, I can't relax because I can't book it. I can't book because I can't pay for it. And I can't pay for it because my head is loudly screaming at me "You might be dead! It's a waste of money because you won't be here. And even if you are, you might be on vem and unable to go into daylight". I'm normally a reasonably spontaneous person. I go on cheap holidays on the spur of the moment and I don't plan ahead beyond two months. This is a first for me, and it is a horrible realisation that one year from now, I may realistically be dead.
I decided the best way forward to try and afford myself some peace of mind is to ask for a scan. I just desperately want my team to look inside my body and reassure me that I am fine, that I can go on holiday, that there is nothing wrong. That's what I want so I phoned Rachel today and asked for it. She did her job and played Devil's Advocate: how would I feel in a week or a month? What if I wanted another scan then? What if a scan threw something up and meant a three month wait to find out if it was cancerous? What if it DID show cancer? I answered them all honestly. I would rather know than guess. Schrodinger's Cat, see? There either is or isn't cancer in my organs. Lots of people think the SC thought experiment proves that a cat can be both alive and dead at the same time, but that's a misconception. Actually its point is to show how ridiculous theory can be when put into practice. The point of it is, the cat is either alive or dead. The scan will show cancer or it won't. Either way, I will know and can stop wondering because I think that's the thing that torments the most. Hence my oscillating posts recently, going from thinking I'm not okay to I'm fine and back. They accurately reflect my recent state of mind.
Rachel emailed a short while later to say I will be discussed at the MDT meeting next Tuesday. Please please let them scan me. Watching and waiting and wondering is torturous.
Hi,
ReplyDeleteI like a yearly scan for the same reason, and I'm only 3a. I hate watch and wait, I'd rather know, good or bad. In order to get "aggressive monitoring" as it is apparently called, I had to self-refer to a second hospital. I can see why many still resist it, when I was diagnosed there was no point in finding out you had mets, because if you did there was probably bugger all they could do, but there's all sorts of treatments now. Also every CAT scan increases your chances of a new cancer by about 1% of you existing chances (rather than 1%, full stop)
Without wanting to seem pollyanna-ish, the stats are based on people's chances back when I was diagnosed when diagnosis was usually later than it is now, and there was no remotely effective treatment other than surgery, so they are pessimistic.
But you can be as optimistic as you like, they compare unfavourably with a tour of duty in Afghanistan (0.5% yearly risk of death), or a round or two of Russian roulette (17% a go with a six-shooter) - I was angry, despairing and so on too when I got the stats, and I still oscillate.
But as you say, it has either progressed or it hasn't. I'd rather know, and face the implications. Good on yer.