Don’t you know who I am?!!!

Yesterday I had a rather heated discussion on a local community page I’m a member of. It’s a long story but I was only sticking up for something I love.

I was harassed, belittled and accused of being a bully. I didn’t get personal (apart from telling someone to wind their neck in!) and I took quite a battering!! There was one thing that was said though, that’s cut quite deep.

I was told I’m full of self importance. That upsets me more than being called a bully.

I never set out to be quite so vocal about my illness. I didn’t plan to share my story, to raise awareness or do the media work I’ve done. It just kind of happened. In fact I’ve always said I feel kind of lucky to have had the opportunities I’ve had – I wouldn’t have, had I been ‘normal’ and not diagnosed with secondary breast cancer.

I’ve never asked people to send me messages about their family members, I don’t expect people to talk to me when I’m out shopping and I don’t ask people to ask me for advice. But they do.

I’ve always said if I can help just one person then I’ll be happy and I’d like to think I’ve helped those people.

But to have what I do interpreted as self important is quite upsetting.

I am the first person to take the mickey out of myself. I’m just trying to live my life and have a laugh along the way. I’m not harming anyone.

I understand that not everyone would feel comfortable doing things the way I do and that’s fair enough. But I wouldn’t criticise your choices and don’t expect you to criticise mine.

Believe it or not, I find it quite cringeworthy being told I’m an inspiration- I’ve done nothing inspirational. I’m just trying to live my life as normally as possible for my children so they don’t have to live their childhood under the shadow of cancer.

Nor am I brave. I’m shit scared most of the time but have learnt how to keep a lid on it – see above ^^^^.

So I’m a little upset today because of that comment. It makes me feel like closing the door as I hate to think that people think I’m up my own own arse.

Don’t you know who I am?!!

Xx

Advertisements

Prog-no-thanks

The first thing people ask when you tell them you have incurable cancer is ‘what’s your prognosis?’

It used to surprise me but not any more. It’s become the norm. There are plenty of other questions that could be asked – ‘how are you feeling?’, ‘can I do anything to help?’, even – ‘do you need a hug?’ Anything but ‘so, how long until the doctors think you’re going to die?’!!

I have secondary breast cancer. I know that I’m going to die sooner than I should. What I don’t want to know is a rough estimation of when.

From the day I was diagnosed (2/5/14) I told my oncologist that I didn’t want to know my prognosis. Just as I didn’t want to know the ins and outs of my particular cancer. I knew that the grade 1 tumour in my breast broke away and set up camp in my bones – making me incurable. That was enough.

I didn’t care to know about the nitty gritty. I wanted to live obliviously.

And I did pretty much. Until 2016, when booking a holiday abroad meant that I needed travel insurance. This is a lengthy process for anyone living with cancer and you have to answer a lot of questions. One of the things they wanted to know was how many bones are affected? I didn’t know so was told I needed to find out from my oncologist (plucking the no.3 from nowhere didn’t work!).

I wish I’d never had to ask that question. I will never un hear the answer. Every single bone in my body is affected by the cancer. I have extensive bone mets.

And this is the exact reason I don’t want to know my prognosis.

You will never un hear those words.

How do you deal with knowing that limited time frame as well as everything else you have going on in your head that comes with a cancer diagnosis? Surely you’d count down the days, months and years and cram a million and one things into that time period. What happens though, when you get to 0 and you’re still alive and kicking? What if you don’t make it – would you feel cheated? I find it hard to fathom if I’m honest.

A prognosis is based on statistics taken from a group of people in a similar situation to yours. But, everyone is different. Everyone reacts to medicine differently. What works for one might not work for another. We are all individual.

I understand that my approach is not for everyone but it’s how I manage living with my illness. It allows me compartmentalise, to carry on regardless and to keep things as ‘normal’ as possible for my children.