Not a great doctors appointment this Wednesday. My usual oncologist was on holiday and his registrar wasn't available so I saw Dr Doom (not her real name) instead. We were about 5 minutes in and discussing my next scan. I think she was feeling frustrated as I had answered 'fine' and 'coping well' to most of her questions. Note to self; more misery is expected from a cancer victim. So I asked what they were looking for from the next scan in terms of what was success and what were the expectations. Years of marketing and sales mean that I am of course, a results driven person.
Anyway she blurted out "well it's not curable, we're just giving you more time" adding, and very badly backtracking, "I mean never say never, but it's unlikely".
Whilst I am not living in cloud cuckoo land and expecting my first mid-chemo scan to reveal that low and behold all the cancer has gone and that everything is fine again; I am trying to remain positive and focus on the fact that there are people who survive advanced cancer, so it is possible. It's a tough battle and the numbers aren't in my favour but after five years there's a long tail of survival and I want to be in that group. I am also very aware from the conversations that I have had with her boss (my usual doctor, and leader in his field) that the aim is to manage, shrink, then get rid of these things. He hasn't given up on me.
The blunt and thoughtless crushing of my hopes by Dr Doom highlights how fragile my positive state is. It's a pretty constant battle to remain upbeat and not be consumed by the over-whelming presence of cancer. There were a lot of tears on Wednesday and Thursday from Al and me; and the knowledge that my children may well grow up without a mother felt very real. I wonder if Dr Doom lay in bed crying for their loss that night? I doubt she gave me a second thought. Her casually flung out words were as useless as they were destructive.
Doctors have power, whilst we know that they are not infallible and like us they are just human and can get it wrong; as patients we are vulnerable to their superior knowledge. They hold the medical file and make all the big decisions, backed with science and evidence, but decisions and choices nonetheless. This is the file that I have not been allowed to see; with all its charts and notes and plans and answers. It is held away from me and flicked through; and the medical team give me crumbs of hope or cast out stones of despair. I resent the lack of control and knowledge I have. I want to read the file, scour the words for hope, and understand it and find a way through. On the other hand I am terrified that, like Dr Doom, it condemns me to just a few years of painful procedures and toxic drugs. It's a horribly vulnerable position to be and Dr Doom needs to know that. She needs to understand the fear that comes with cancer. The icing on the cherry tumours. The constant desire to see old age, the nasty thoughts that accompany every plan over a few months old. Do I renew my season ticket? Yes. Will I see Rosie start school? Please please God.
Dr Doom needs to know the struggle that all cancer patients have not to give in to the despair. Ultimately she needs to be a bit more freakin' sensitive. Careless talk and all that...
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