Yes, I have incurable breast cancer, but this is only part of my story - please don't write me off just yet

Cancer treatment is at an exciting crossroads, where a stage IV diagnosis no longer means a terminal diagnosis. But the drugs that make this possible are being held at arms-length

Click to follow
The Independent Online

I was diagnosed with stage IV breast cancer at the age of 30. Since then, I have had six surgeries under general anaesthetic, I’ve been admitted to hospital via A&E twice, once with a life threatening infection and another time with an extreme allergic reaction to chemo. I take six tablets a day, every day. I have a monthly injection to stop my periods, as oestrogen fuels my cancer (the side effects of that for a woman in her thirties are pretty horrible). I’ve had a total of twelve cycles of chemo and lost every hair on my body. I’ve been so weak that even getting up and walking from my bed to the bathroom was difficult due to poor balance. The thing about stage IV cancer is that treatment to control it is for life, as it's incurable.

So that’s me. On paper, as a patient statistic, this is who I am. But this story is only a small part of me. Unfortunately, though, it’s the part that our health system pays attention to when thinking about value for money within the NHS.

But this is the rest of my story. I’m 36, and I married the love of my life when I was 31, eight weeks after undergoing chemotherapy for my stage IV diagnosis. I wore trainers under my dress and danced non-stop for three hours at my wedding despite being hospitalised with a life threatening infection just weeks before.

I work four days a week in publishing and get a kick out of my job. I love yoga and running and am proud of the fact that I can complete a 5k in 28 minutes.  I rebuilt myself from the ground up after receiving my second cancer diagnosis. I felt worthless, less than nothing, like I was outside looking through a window at everyone else’s perfect, normal life. Its taken six years, but as I write this piece, I feel fitter and more confident than I have ever been. This is in no small part because organisations like Breakthrough Breast Cancer and the wonderful Younger Women’s Breast Cancer Network, ensure that women like me are at last starting to have a voice.

Because we’re living longer, and better, with cancer than we ever have done before. Six years on from being told I have stage IV cancer, I can be considered a real NHS success story. I have been incredibly lucky that I have been matched with a treatment that works. But my experience should be the norm, not the exception.

The Younger Women’s Breast Cancer Network is a chat group on Facebook of younger women, including me, from all over the UK who are facing a secondary breast cancer diagnosis. Many are in the midst of treatment and are feeling that same lack of worth I felt at diagnosis. This is compounded by the fact that we are being told the value placed on our lives is not enough to warrant the price tag for effective new treatments designed to stabilise our breast cancer, treatments like Kadcyla. We are all aware of the constraints on the NHS and like you, we love it, and don’t want to see our beloved institution struggle. We are aware of the extremely high cost of these drugs and the very difficult decisions that NICE have to make.

We’re women who should be in the prime of our lives, many of us mothers with small children, many of us still working. We try to make cancer fit around our lives, not the other way around.

And we’re struggling. While cancer treatment is at an exciting crossroads, where a stage IV diagnosis no longer means a terminal diagnosis, the drugs that make this possible are being held at arms-length, with only the cancer drugs fund, always intended as a temporary solution, to help us. For the record, I do not consider myself terminal until there are no treatments left that can stop my cancer from progressing. We are excited because there are treatments out there with side effects that mean we can carry on living fulfilling lives. But the message we get is that as we’re incurable we’re not worth it.

The myth that we spend our days suffering, immobile, and getting more and more ill still endures, despite the fact that it is no longer the case for many women. The stats for the current drug I’m on suggest that they should have stopped working about 4 years ago, and by now I should either be on other treatments, or dead. But we’re not statistics, and the problem in front of us today needs a new approach that acknowledges the huge gap between those stats and the reality for many women.

The women I’ve met on this journey are some of the most strong and formidable people I know, they absolutely rock. They all want to grab onto life with both hands and make the very most of it. The enormous cost of new tailored treatments is a hurdle, but please don’t forget that we are mothers, sisters, daughters; we run our households, we work and pay our bills, we are responsible for raising the next generation, we matter to a whole network of lives around us. When we die, the shockwaves radiate outwards, and every life in that network is touched for the worse leaving a tear in the fabric of our families and our communities. The cost of that tear to our society isn’t one that can be accurately measured by money, but having seen it first-hand I can promise you, it is huge.      

We’ve come a long way with cancer treatment; hopefully just reading my story will tell you that. But to keep moving towards a future where women like me can live longer feeling well, spend less time in hospital with debilitating side effects and more time with their families, and keep working if they are able to, we need access to the drugs that can make this possible.