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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Monday, 22 October 2012
Actually there's at least 4 tumours on board.
I am constantly bemused by how similar my cancer/chemo symptoms are to those of pregnancy. The heightened sense of smell, a constant feeling of slight nausea (during post-chemo week) that is only resolved by eating vast amounts of carbohydrates, the consequent weight gain (also steroid induced) and bloating, various skin issues, bleeding gums and tiredness. Obviously there are a few obvious differences, the lack of congratulations and associated gifts (hard to believe I know), I don't get offered a seat on the train and there's staggering different objectives in mind - basically I don't want these little parasites to grow.
A predictable cycle of symptoms
Unlike pregnancy my symptoms have a nice 'easy' pattern that I can try and follow, aim to anticipate and that actually help remind me that there's improvement on the horizon. I can even map their progress in a PowerPoint chart (apologies to Bryan Scott and Linda Grant for the poor visuals).
The Sunday after chemotherapy
The first indication that I am in the post-chemo zone is what I now call my 'chemo cold'. This consists of a constantly runny nose, sores inside my nose and several small/tiny nose bleeds a day.
For the first 2 days directly after the pump is removed there is the post-chemo and steroids tiredness. A bone aching weariness that finds me propping myself up against tables when I am standing and leaves me with precisely no patience when it comes to dealing with 3 kids and 2 dogs. Apologies to the small and tall residents of Slyvan Way.
The spots start multiplying this week too but they are so much better since I've upped to the antibiotics, that compared to everything else they are really quite minor irritation (the scalp ones are still pretty itchy and awful though).
Monday to Thursday
My levels of indigestion and stomach cramps start to increase from Tuesday culminating in my regular Thursday morning attack of terrible pain and vomiting. The bucket and I are reacquainted and the cold sweats and cramps make for a hideous but regular diary entry. I now have this marked as a meeting in my work diary so I can be late if required. However once it's done I take a loperamide and it's over for another 2 weeks.
The Saturday (8 days after chemo) is my immune system's nadir. My immune system is at its weakest and apparently I am very vulnerable to infections. I've yet to experience this in an obvious way but this is when the mouth ulcers kick in. Lining my tongue, lips or inside my mouth. They pick their position and bed in for at least 5 days. I have a great new mouth wash that leaves the inside of my mouth completely numb and helps hugely.
One week after chemotherapy
My skin also reaches new levels of dryness this weekend. Patches appear on my eye lids, round my nose, and across my cheeks. Again it's all pretty manageable and now I have the antibiotics skin issues are signifcantly less of a challenge.
10 days after
It all starts improving. The chemo cold is pretty much over by Wednesday, mouth ulcers have disappeared by Tuesday, my gums stop bleeding on Thursday, my skin starts is clearer and less dry towards the end of the week and my energy levels return; just in time for it to all start all over again.
2 weeks after - like poor old Michael Finnegan it's time to begin-again
7 hours of hardcore drugs pumped into my arm in the cold grey dull space that is the Chilworth Day Unit.
I am lucky (although getting cancer itself isn't that fortunate), my chemotherapy symptoms are more of a series of staggered niggles rather than the complete wipeout that lots of people experience. I am able to work pretty much full time and cope with everything with support and help from Al, my mum and Battersea all of who are being amazingly wonderful. A lot of people, especially those with more aggressive cancers, are sick constantly, lose their hair and find the treatment as tough as the disease to deal with. I am not one of those and I am very grateful.
In terms of the pregnancy likeness of it all, I am also aware that, as I am fairly regularly reminded, that apparently I whined a lot more when I was pregnant. Now there's an irony.