may I be Frank ?

things they forget to tell you

I imagine that having a serious illness is a bit like having children. There's all these things that happen to your body and mind that no one ever told you. All kinds of indignities you never expected to experience and all kinds of conversations you never expected to have. At the moment the conversations I have have a surreal quality when you find yourself talking to a total stranger (on a legal matter) saying "well should you pass away before the matter is concluded then...".

I mean REALLY. How stupid is THAT?

And conversations with friends - where people are stuck for words, I seem to be living on many levels all at once, with the most trivial and important interweaved.

I wonder how much people really want to know or not know. If you're going to read something like this - I imagine you want the real heartbreaking info or do you?

a red letter day

I always wondered what that actually means but thought I would wear red just in case, for strength. I wore pink on monday and it just didn't work for me. The anticipation of going to meet the new consultant was palpable. Like the worst type of waiting for exam results. Here I am, anticipating:

The 9 minutes I waited for the train to London Bridge seemed to go on forever
Wait Wait Wait
Then waiting to see the consultant
Then I will be waiting 3 cycles to see if these new drugs work

So...shiny new consultant oncologist said:
- good news is the cancer has got smaller since the last scan
- bad news is the platinum drugs have almost certainly stopped working
- good news is I can try some different ones which may or may not work
- bad news is my hair will definitely fall out completely

don't want you to think I'm vain but some how looking sick as well as being sick is doubly bad

Good news is my boyf is coming from back Italy to see me...tonight!
The things a girl has to do to get attention from a boy eh?

who is Frank?

It was 12th of June when I first met Frank. He greeted me warmly with a firm grip, ushering me to the chair by his desk. Opposite me was a poster, the kind used to teach children the alphabet. A is for apple, B is for boy, X is for X ray. I didn't notice it at the time.

I'd like to remember what Frank said that day. I copied down some notes from the meeting but none of them make any sense when you read them back. All I remember was Frank's kindly face, his warm demenour and his slight northern accent making you want to believe him. I was soothed by hearing him talk.

Frank is a Gynaecological Oncologist: he changed my life: he told me I had cancer.

some days just everything goes wrong....

Knew it wasn't going to go well - the results of my scan weren't back in time for me to see the consultant. This was my 5th Chemotherapy treatment and the scan was to see if the drugs do work.

If the tumours have grown then I will have to have different drugs and they might not work as well. Near impossible to get a straight answer out of my consultant Oncologist. This isn't Frank I'm talking about, Frank is a surgeon. Peter knows about the drugs. He's old school and used to dealing with little old ladies who just want to be told that it's all ok. I want something a bit more analytical and structured. I'm 35 I want to know if and when this bastard is going to kill me.

Waiting for scan results is like waiting for exam results but much much worse even a days delay is just awful, I couldn't have my chemo today because of it. I decided there didn't seem much point putting cytotoxic poison in to me if it was the wrong sort.

What isn't it with the medical proffession that even in 2003 they can't treat you as an equal partner? Everything I read tells me being an active patient is better for your head if you can take a part in your treatment. This guy had been making me depressed with his lack of answers and partronising behavior. I took my sister in law and previously my sister and they both agreed that he was difficult.

So I ditched him...
I'm getting a nice new shiny reconstructed consultant on Wednesday who will explain things to me and recap when I ask stupid questions. Believe me when you are trying to listen to all this important stuff if it is really difficult to hear what they are saying.

It gave me a great deal of pleasure to politely and reasonably get rid.

but then when my day couldn't get any worse, my hair started falling out in clumps. Just under my right ear. I put my hand through my hair and there it was. I'd been really lucky up to now and I'd got a full head of hair. Why today ? Why why why?

oh and the yoga class I turned up to wasn't on
uggh