Welcome to the c word

I rarely show the world what is going on inside it is just not my style. I hide pain and constantly worry about worrying other people and how they will feel about how I am feeling. I keep my problems to myself and sometimes even from my closest friends. Well not this time.

I have been on the c word roller-coaster (I'm calling it the c word to go easy on the faint hearted) for over three weeks now and have decided it is a good idea to write down what's happened, happening and going to happen then whoever wants to keep up to date can without being forced to hear about it through emails from me. Because you will all have days where you just can't or don't want to hear about this. I get that it’s ok.

I hope not but you also might meet people or know people who go through something similar and it might just help them in some way to know they are not alone and when they fall apart it is ok because who wouldn’t. When you read this please forgive grammar and spelling etc I have not slept for three days and sorry too if it is up and down that is pretty much how I am doing most days.

- Tuesday 23rd February 2010

Wednesday, 26 May 2010

Reliving teenage embarrassment and new fears

Yesterday was a bit of a surprise. I found myself expecting to talk about radiotherapy but ended up with the chemo debate rearing its head again but this time the result was I had to pretty much on the spot confirm I was turning down chemo and it was my decision. I am not turning down the recommendation of chemo I was told not to bother as it would have no beneficial impact on my type of cancer. So the oncologist in Brighton does not really agree with the one at Royal Marsden in London but I am going on my gut feeling and sticking to my first recommendation from London. 

For a 31 year old with cancer to not have chemo in hospitals outside London is very very peculiar and radical and therefore they believe risky. It would have been a given only two years ago even in London. It is the procedure across the board really. Even my own GP from an entirely different surgery rang me yesterday and asked why I was not having chemo. So why am I not having chemo? Well, I had a Luminal A tumour Grade 1 (initially Brighton judged it to be a grade 2) and a small tiny fragment of the tumour that broke off into the glands (nodes). Now from the glands that fragment could have got anywhere in my body EEK...unlikely though I have been told but could have. So we had the second surgery and they removed a load of glands to check them; remember me in hospital with a drain thing out of my armpit and dying people everywhere, well that was why). The glands they removed came out ALL clear. But the Brighton oncologist believes that the gland having that small trace in there is a sign and should not be ignored. Gulp. He did not however, and this is crucial, know when he said this that I had had a second surgery which turned out to be all clear, so I will never know if he would have reacted the same way had he been given all the information before hand. Ugh. Tough call but I feel more trust in the Royal Marsden and their experience and connections with all the specialists you can imagine.

So that is that, I signed a consent to have radiation therapy (rads) and I am to go in for 2 hours on 9th June to be tattooed and aligned in the dark whilst lying very still (gulp) then to ready to start four weeks of treatment every weekday without fail from 24th June. So I will be hopefully done with it on 24th July 2010 and then recover for a week or two and...um...well hope for the best that it works.

So on an amusing note I will tell you about my mother who said she doesn't read this blog and I hope today that is true but we will soon find out won't we if the phone rings in a few minutes. My mother a wonderful caring woman with a heart of gold can still completely embarrass me in seconds and leave a stain of shame that hangs over me all day and would she notice when this happens? No. I am 31, old enough to have children, car, house, career, Breast Cancer and I think most civilisations in the world believe that 31 is definitely an adult legally and socially. So why on earth would my mum, bless her, feel it necessary to go into intimate detail with the nurse at the breast clinic yesterday about how I had bad diarrhoea whilst in hospital after they gave me laxatives and they should not have and I spent the night texting my boyfriend in tears. Words cannot. We get outside and she says to me are you alright? Then claims she knew I would not deal with the appointment very well so would need her there for moral support. Oh mum.

1 comment:

  1. You holding together? I'm guessing you are having run ins with the Sussex centre. Got to say, sounds all too familiar. Email me if you need someone to yell at.