In 2019 I was diagnosed with Triple Negative breast cancer, an aggressive form of the disease which affects 10-15% of patients. I’d never heard of it, so I had to try to research what the future might hold or if there was actually going to be one.
Just a few days before, I’d been suddenly made redundant, so I had time to research books, read articles and scour the internet and Facebook groups. That was probably the worst thing I could have done; I scared myself senseless!
Because my cancer was Stage 3, meaning that it had already spread, I was put on chemotherapy immediately. I had weekly doses for five months, followed by surgery and radiotherapy. I’d been asked to participate in a clinical trial for immunotherapy, so as soon as I was over my own treatment, I embarked on a 12-month course, which was given every two weeks as an infusion, just like chemotherapy. It was relentless, but every day I’m grateful to have been offered the opportunity to get involved in this amazing piece of research.
Prior to getting cancer, I only used medication if I was desperate! My body went from being drug-free, apart from copious amounts of caffeine, to being pumped full of toxic chemicals on a weekly basis. I didn’t feel like me.
Like many cancer patients I lost my hair, which was traumatic. I also lost my eyelashes, my eyebrows and quite a few of my fingernails and toenails. I lost the feeling in the ends of my fingers and toes through neuropathy and the feeling on the underside of my arm where the lymph nodes used to be.
I also lost some friends; people who ghosted me when my diagnosis became common knowledge. I understand that it’s difficult; that it might be a bit uncomfortable to stay in touch, and that it might take a person out of their comfort zone because they don’t know what to say. I appreciate that it’s far easier to turn a blind eye and hope that all goes well so that the friendship can be resumed in the future when the cancer has been brushed aside. I do understand.
But when you’re going through the scariest time of your life, friends and family really matter. Family members have little choice, but friends do, and those who go the distance and offer unflinching support throughout your treatment become so precious when your treatment finally finishes and you can get life back on track. Those friends become friends for life, lifted on a pedestal forever. If you ever get the chance to be that person for somebody, please do it.
At the beginning of my journey, I wrote everything down. I found it therapeutic and it was one of the few things I had the energy to do. I just kept writing; timescales, details of my treatment, changes to my body, how I was feeling, what was going through my mind. Things that were tragic, but also things that were funny. Things that I had no control over, but also things that gave me a focus for my future. My notes were like a cocoon, a mish-mash of information that would develop over time and at some stage hopefully emerge into something meaningful, something useful, something that might help others.
That something turned out to be a book. A bright pink book with a cheeky title ‘Tits Up’. It’s a book that I’m immensely proud of. I bared my soul in it and I hope I paid tribute to some who weren’t as fortunate with their treatment journey. It isn’t everybody’s cup of tea, I’m sure. Some people choose to bury their heads and pretend it’s not happening to them. We’re all different and we all deal with the deck we’re dealt in whatever way we can.
I wanted my book to be something that people are happy to pick up and flick through. It doesn’t look too scary. They can laugh at the name, or the illustration of the cupcakes. They can flick through the pages, 290 pages containing 80,000 words of some of the most personal stuff I’ve ever written. Or they could read it from cover to cover. I aimed to write it in a conversational way that’s easy to take in. Even the most difficult parts are easy to read. I wanted it to be helpful to patients, family, to friends who want to find out more. I also wanted it to raise funds for breast cancer charities, and that has started to happen. Thank you.
Once you’ve been touched by cancer, it’s with you for life. Physically you might recover, and you might look just like before, but mentally it’s a different story. The worry is like a big cloud that follows you around even if, like me, you choose to look for the sunshine in life. Not a day goes by that I don’t worry if my cancer will come back, and if my positivity will backfire. My brain is constantly computing the probabilities. How long till it comes back? Will it ever come back? Is that pain arthritis or has my cancer spread to my bones? Will I get through my next round of tests? Is it tempting fate to book a holiday for next year? Why have I got a headache? Will today be the day that my world come crashing down again? Am I being too positive?
But I have to juggle those thoughts along with some good ones, otherwise the rest of my life, however long or short that might be, will be tainted. I’ll miss out on so much.
For me, life has become much more precious on so many levels. Cancer definitely showed me some dark places but it also shone a bright light on some areas of my life that are absolutely amazing. I’m loving life at the moment. It’s fun, it’s intense, it’s creative and I know there’s more to come!
This project is a wonderful idea and I hope it does what the artist imagines. Butterflies are a beautiful symbol of hope and the effect of tiny positive moves can be transformational. I look forward to seeing these butterflies and the QR codes everywhere!