“You look so well”

(For someone with terminal cancer)

Why do people constantly say this to you? Mostly I do look well. I make an effort with skincare and a bit of make up. I have a decent hair cut (as much as you can with post chemo curly regrowth). Despite my distorted and ever changing shape I try to wear clothes that make me feel good (balance of comfort, fit and style). For all intents and purposes I do look well. I am well.

Yet I have terminal breast cancer. I use that deliberately jarring word because unless I throw myself under a proverbial bus it is the advanced, secondary, stage 4, terminal, metastasised breast cancer cells that will kill me. (Although I have had a brief dalliance with a pulmonary embolism, but that’s a story for another day).

So, what does someone with stage 4 breast cancer look like? Even a year ago when I had stage 3 I didn’t think stage 4 would look and feel like this. This is why people sometimes write you off or feel pity for you when you have advanced cancer – they think you will look and act ill. I think it’s why they say [but] ‘you look so well’ in a surprised tone. They don’t fit the stereotype of someone with advanced cancer on their third series of chemotherapy and 7th chemo agent. It’s ignorance, maybe denial. Like me they think a stage 4er would be too ill to do most things.

Not me.

I’m still doing my upmost to grab life with both hands and be normal. I’m also on a quest to give people a perspective of what it is like to have to wake up every morning and face another day of tablets, treatment, appointments, fights to be heard and taken seriously.

The fight for your life every day.

The cancer is one thing, but the system is another. My daily fight is like this:

1) The system (disjointed, stretched past breaking point NHS system, drug company protocol, NICE guidelines, insurance company, the postcode lottery)
2) People’s ignorance, attitude and outdated stereotypical view of cancer
3) Treatment side effects (historic, cumulative and current)
4) My own demons and expectations about what I can do
5) The cancer
Once I’ve done that there’s the normal hectic life of a young family and that’s before the Christmas madness.

Despite this pile of things to battle I still want to enjoy my life and contribute to society. I crave normal, not extraordinary. I still want to help out on the school fireworks ‘glow store’ even though I couldn’t officially commit and just jumped on, on the night. I still want to do the garden, swim, cook, walk and work. Yes work.

I feel alive when I work. I feel like me. And that’s actually all you want to feel when you are fighting for your life. I was born to work. I love it. The week before last I did a piece of work designing all the facilitation sessions for a conference for 250 healthcare professionals. I trained the facilitators and made small talk through a sit down dinner. I smiled and offered paracetamol to the man with a cold and a headache. I did a good job. I contributed. I used my busy brain to help some other people and I earned some money. I was delighted to have the opportunity.

I checked out of the hotel the morning after and did battle with flooded rail lines. I got sent to Coventry (literally). I went around the problem (that’s what I do) and got home to dump my bags. I then turned around and got a train to London for yet another hospital appointment.

And you know what they said?

‘You look so well’

And I did. Yet, I was tired. My feet and hands were red and stinging from chemo induced side effects (apparently it’s the drug leeching out your capillaries) . I didn’t have enough oxygen from my low red blood count to climb stairs or walk far, my lymphoedema arm was enormous and heavy (32% bigger than my left arm). I could no longer get my coat on my arm. But I was still smiling and still keeping on keeping on.

It is a total paradox, on the one hand I want to be treated normally I am still me after all. On the other I am struggling mentally and physically to hold it together. I want and need to be able to park nearer or to have a seat on the tube, yet I look well and I don’t want special treatment. I am multi faceted and a contradiction.

I think I need to be kinder to myself. To give in to more help, so that I can get home from a whole day of hospital appointments in London and still have enough energy to help with the Roman project and read bedtime stories.

I suppose what I’m saying is I want people with cancer to not be marginalised by society because they don’t fit the mould of sick or well. Like me these people have much to contribute, but equally we need a hand with a few other things so we can keep doing so!

I want to be treated to live, not live to be treated.