We all have them, those hospital appointments that loom on the horizon blocking all light from the sun? Well I do anyway. They seem to blight days beforehand worrying and fretting, in an attempt to organise that list of questions, in order to finally get some unpatronising answers. As one intelligent, rational adult to another, not being fobbed off. So why does it not happen like that?
It was an appointment like this where, to be honest, I really did not shine.
I had an additional appointment with the oncologist as, yet again; I had made a huge fuss. I could not, well, still can’t, believe that after all that, the treatment ends with chemo and the cancer will either return and kill me or it won’t. Other than a chat with the odd very well qualified individual there are no scientific follow ups at all. No blood tests, no scans, just a one in ten chance of a rather less optimistic outcome. (Even if I did comply and take the wretched pills).
So here I was sat opposite the oncologist with a nurse stood in the corner (they do like to keep you physically below them and outnumbered). None of my friends could come with me for this one, so I’m sat in a very high, ridiculous pair of shoes, wearing power lipstick and clutching my list of questions. I knew it was going to happen as soon as I locked the car. Fought it, but it was inevitable really. I think I managed to get the polite greetings out of the way before I started to cry. Already I had gone from rational intelligent woman, to basket case.
Tears seem to be all mixed up with, why me, god I am angry, still terrified, and cheesed off that I’m here at all and not continuing my life as I wanted, instead of cancer controlling events.
I wanted to know what the statistics really meant about the vile hormone suppressing drugs they wanted me to take. I am BRCA 1 and this is not usually hormone receptive and does not usually mean ten years of Letrozole or Tomoxifen or the like. Ten years. Ten whole, the rest of my children’s childhood, years. I took the Letrozole for two months, as it turned out one of my two types of cancer was just ever so slightly hormone receptive.
My eldest son said “Mum, you had a whole lot of sleeps during your chemo, but you were far more bouncy than you are on these pills”, and he was right. The suppression of oestrogen meant that my joints hurt, that sort of dull pain, that you feel in your sleep, that takes the shine off your smile, makes you snappy. Walking down the stairs first thing in the morning, was done in the style of an old lady, not a vibrant girl with marathons still on the bucket list and two boys to raise.
So I wanted to know what it really meant. The odds, the rational well informed choices. I was useless. She printed something off, told me “I had to take them”. Other medics have told me “you have to”, but they are wrong. It’s my body, my life and my choice.
Why is it than when you argue with a medic they then resort to “I think you are depressed”. Trouble is when you are sobbing quite audibly it is rather a hard point to argue? I got none of my answers. She felt around my implants and my armpits and told me all was fine, but I could have told her that. I was, and will be again, a triathlete. I’m in tune with my body. She was just performing a physical platitude to send me on my way. The appointment ended with no proper discussion as to, the increased chances added in my favour by the ovary suppression (as in, they whipped them out at the same time as the cancer). She sent me off telling me in no uncertain terms that I was to make a double appointment with my GP in regards to my depression and a couple of packets of Tomoxifen. If I was refusing to take the Letrozole then I must take this. It does not work as well as the original prescription but …..
The underlying unsaid was that if I wasn’t doing as I was told it couldn’t possibly be that I was making an informed choice, just that I was depressed and not seeing things clearly.
Never did find out how much it would increase my chances, the joint paining, smile quelling Letrozole added 3%, and there are always those lines about choosing life, if you saw the people they see, you should do everything in your power to keep the cancer away.
Does quality of life count for nothing?
Thing is that is why I have chosen not to take them. I am rather embracing feeling closer to healthy again. I want to live as me, and be vibrant and happy and If that means that I will be here a shorter time, but with happy boys who want my company and even hang on the odd friend, then that is what I choose. I am very much choosing life.
……and no, I’m not depressed, just having a bit of a cry.