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

Saturday, 10 April 2010

Cancer Stasis

I will tell you a secret. My plan for the next few years was to complete my degree then move on to do a masters in September, squeeze in a little more travelling during the breaks, start an online magazine focused on trying to rebuild confidence and break down the unhealthily desired body image of most young people and of course deep down inside I was thinking that children were the next step for me. The worst thing I am finding so hard to let go of are these delayed or lost plans of mine. I am in cancer stasis, going no where. I still do not have any idea what the future is going to look like and the doctors being doctors don't always paint a pretty picture.

After the usual nausea filled hour long wait in a large chaotic room surrounded by significantly older people looking at you like you are lost we were seated in a small room and abandoned for another half an hour. Until the registrar I saw last week comes in and proceeds to run through more gory details few of which I retained fully as she was the one with the fast speed South American accent I cannot fully decipher. So things that stuck with me; I am booked in for surgery on my armpit (axilla) in four days, as in TUESDAY, in Sutton. The surgery is called a ????? clearance where they (ick) move all the nerves and importance stuff out the way and take out a load of tissue including maybe all my glands. They run this through a ton of pathology tests and come back to me ten days later with results.

So the surgery - There is way more risk for lyphoedema, that incurable infection I keep fretting about. I may not feel part of my arm because they have to break through some nerves that cross over horizontally and they may never reconnect or not properly. I will no longer have glands in my armpit so my other glands will have to work hard to cope and I may find future problems due to this. It is 'not ideal' to be doing the operation so soon after the last one and I am pissed off to have just got back on my feet to be knocked over again on so many levels. I will have to remain in Sutton Royal Marsden for 3-5 days with a 'drain' in my armpit, so totally panicked with how to ensure Phil is there for me but retain enough holiday for him to sweep me out of the country when this shit is all over I have no clue. My degree, I have no clue. What to do with the children who are supposed to be back with us Friday whilst I am still in hospital, I have no clue and then of course I need them to not be near me for at least a week so I don't get infected. What to sleep in, what to pack, finding time to get prepared and rest, I have no clue.

The treatment - She did not mention radiotherapy once. She talked of chemotherapy more times that I wanted to hear. Her bedside manner was not exactly what I would call gentle unlike Mr Gui who I had expected to see yesterday but was called into surgery then trapped with another patient. She said that when they have all the information and they can see if the glands are clear or not then they will recommend treatment by putting in the data in a computer and seeing if their stats show women with my situation undergoing chemo and how many of them are alive in ten years compared to not undergoing chemo and see the risk. 10 years! What the fuck did she say that for? I am sure she has trained for years and knows more than I could imagine about breast cancer but she knows nothing about people because that kind of phrasing would not have left my lips if I was talking to someone who is facing what I am facing.

She also talked of the slight possibility of the little microscopic pieces of the tumour having broken off and gone through the glands into the blood stream and that if there is any evidence of this chemo is the best method to ensure we get rid of that or of course it would wreak havoc anywhere I have blood flowing. I agree but I stupidly had convinced myself I would not have to have it and the reality is not going with me on this one.

So I am sorry that I can't appear to be incredibly positive about this right now but I think I deserve to be entirely fucked off for just a day or two, I will turn it around in no time at all, possible later, and bounce back no doubt about it but come on you have to admit it is shit by anyone's standards.

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