Seven years on: what I wish I had known during treatment

21 February 2014 was my seventh ‘cancerversary’.

Seven years ago on that day at about 3pm, I was sitting in a room being told I had a highly aggressive form of breast cancer which would need surgery, chemotherapy, radiotherapy and Herceptin. When I asked if I was going to die, all my doctors could tell me was that they would throw everything at it.

I looked for answers

The world turned to liquid. I could hear my own breathing and little else and I felt as though I was watching myself react. It’s a cliché to say nothing prepares you to hear news like that. You find yourself questioning what you should do. Should I scream? Cry? I opted for telling my doctors I would not go for the tests they had ordered as I had things to do, and I walked out, bought a bottle of red wine and steeled myself to tell my family.

I did go back for the tests, which were to see if the cancer had spread, the following day. I got the results a week later – it hadn’t.

This was good news in a sea of appointments in which the news seemed to get worse and worse and worse over the following few weeks and months. I had assumed that they would simply need to take the cancer away and I would be fine. Everything I’d seen my in life before I had cancer suggested that breast cancer was very curable, that young bouncy women wore pink and had fun together bonding in a cancer sisterhood in which everyone got better and your hair grew back.

I learnt a lot – my cancer was grade 3, my tumour was a massive 8cm, HER+++ is very aggressive (young women generally have more aggressive kinds of cancer), my lymph nodes were full of the stuff and this was not good. Not good at all, according to people posting on the message boards I read.

I Googled and lurked on message boards. I looked and looked for the answers I wanted to hear and I desperately tried to find out if I would survive. I didn’t want a wake-up call or a reality check or to see it how it really was – I wanted some hope, a sense I had a future, and something to still the terrifying lurch in my stomach which kept taking my breath away. It was so bad I lay on the bathroom floor for hours at a time just so I could listen to my breathing and feel the ground underneath me.

What I know now

So seven years on I’d like to give those people searching for good news something to find. I want people who are feeling as scared as I was to find a story of someone who’s living their life after breast cancer – even the scary rotten-node mega-tumour kind.

I’m not suggesting that my experience reflects anyone’s other than my own but these are some things I know now that I didn’t know then.

It’s still scary… but it’s less scary

It can be frustrating to have to explain to people who think no one dies from breast cancer that people still do. And that it isn’t cured after five years or even 10 years. Even when it’s no longer in your body you carry the fear of it coming back in your mind. Sometimes even now, I lose days or weeks to pure terror again when it’s the first thing I think about when I wake up and the last thing I think about when I go to sleep. Sometimes I still have to lie on the bathroom floor.

But – it gets better. Nothing has ever been as frightening as those first few weeks. Once I knew the facts and what the plan was, I felt a little less frightened and I kept feeling a little less frightened every day until eventually weeks went by and I realised I hadn't thought about it at all. I just kept putting one foot in front of the other.

Good things can still happen

Some people go on to not just live but to realise the dreams they had before cancer became part of their life. I wanted a family. Being told that chemotherapy meant this wouldn’t happen after my treatment was almost as painful as being told I had cancer in the first place. I felt as though it just kept on kicking me.

But then at an appointment with an oncologist who insisted on a pregnancy test as he didn’t believe my symptoms were sinister, I found out I was expecting my son who’s now a noisy adorable healthy-as-a-horse two-year-old. I’m not suggesting that everyone gets a miracle but sometimes you do.

Your experience is unique

Your cancer, the way your body reacts to it, and your treatment plan is unique. You can Google lurk and agonise over recurrence, secondary breast cancer, prognosis and life expectancy, but in the end no one can finish your story for you.

My oncologist told me that he planned for me to live a long and happy life and that I was getting gold-standard treatment. Thanks to the women who campaigned for Herceptin to be provided on the NHS for primary breast cancer, I got the absolutely best care that was available anywhere in the world and I feel incredibly lucky.

It’s hard to let the fear go – I found finishing treatment challenging as I didn’t feel as though I was doing anything to stop the cancer coming back. I wanted the structure and the practical steps. But gradually I’ve learnt to give myself a break and trust myself and my body a little bit again.

When I was diagnosed with breast cancer seven years ago at the age of 28, the last thing I wanted was a reality check. I wanted stories of people who had made it out the other side with their sense of humour and sense of self vaguely intact. I hope that some of the people frantically Googling for hope at 4am might find a little bit of it in my story.