Holding Both

Living with cancer from where I stand

Dear World

Someone I met recently is in hospital. By the time I edit and publish this she will have died. She’s a bit younger than me, married with two small girls. An ordinary person who was living an ordinary happy life filled with love. We met at an online exercise class for people with breast cancer in February. We both wanted to keep our bodies and minds strong, we’d both recently been diagnosed with metastatic breast cancer. She was first told that she had cancer six years ago when she had chemo, surgery and radiotherapy then and was cancer free. Until she wasn’t - and the cancer returned a couple of months after mine had at the beginning of this year. The cancer in her body has resisted all the treatment she has been given. And because there is no cure for cancer she will die.

Image: © Juliet Simmons

This has all happened so quickly, it’s so brutal, so sudden, so wrong, and so very shocking, it’s a lot to get your head around. But this is the reality of living with stage 4 cancer. You live and love your life not knowing what is around the corner. You can be well and then unwell and then in hospital. You might get better, get home, embrace life. But you might not.

And whilst I know the media, celebrities, the world want to reassure you about breast cancer diagnoses this is what I want you to know about stage 4 metastatic cancer – actually about all of it. I want you to understand that breast cancer isn’t just one disease, there are over 30 types, that the new drugs that you hear about don’t work for everyone but hopefully one day they will, that these drugs won’t cure the cancer they will just keep it at bay for a while. That the drugs we are given to kill cancer are toxic that our bodies were never meant to endure them for long periods of time. That they come with side-effects - and whilst we may look really well on the outside, we may also have bones that break, joints that ache, eyes that water, mouths filled with ulcers and nails that split. We might get blood clots, our lungs might become inflamed, our limbs might swell, and our hearts might get weaker. That sometimes taking those drugs means making choices we never anticipated that we’d have to make. We look well, we want to be well, but still, we have cancer in our bodies. Powerful toxic cells. Cells that don’t die easily. Tiny small things - but the small things are the big things.

I want you to know that two things can be true at the same time. That despite the dark days we also have rebellious hope - hope in research, in our oncologists, our medical teams, hope in the power of healing. Hope that new drugs will emerge for our kind of cancer, drugs that will give us more time, proper time, years and decades not weeks and months. Drugs that will cure cancer one day. Because we want to be alive and we want to live despite knowing that we will die. And we understand that having that knowledge is a special kind of superpower - it allows us to focus on what really matters, to notice how awesome this world is, to live in the moment and not get ahead of ourselves and to see the beauty is everyday small things - because the truth is they are the big things too.

I want you to know that you can live well with stage 4 cancer but that sometimes it’s frightening. It’s a place where we can run 10km races, ride bicycles, travel abroad if we’re well enough. And it’s also a place where we just don’t know what to expect from our treatment, our bodies or the disease. It’s a place where we sometimes feel misunderstood and alone. When we watch TV and are told that early detection saves lives we wonder if we are invisible because yes, early detection may save some lives for some early-stage primary cancer patients but it won’t save our lives. Right now, those of us who live with late-stage cancer will all die… I want you to understand this.

Image © Juliet Simmons

I want you to remove the shame and the guilt that some of us are still made to feel when the cancer becomes incurable. Because around 30% of those diagnosed with early-stage breast cancer will have it metastasize at some point, and this can happen up to 20 years after an initial diagnosis. We don’t know who these people are, who will metastasize or why - because cancer is a smart, sneaky toxic disease. Not because we haven’t done enough to stop it.

I want you to understand that every single person who has ever heard the words you have cancer at some point in their life carries the fear of recurrence with them in some way. Everyone. That there is no “good” cancer diagnosis, that even stage 1, grade one DCIS in the breast can metastasise and kill people – and it has.

I want women to know their normal, to check their bodies. To go to their doctors, to ask if they have dense breasts, to be scanned and followed up quickly. I want GPs to never turn women away and tell them they are too young or too anything to have any kind of cancer. And while we are at it I want those who have had a cancer diagnosis and finished initial treatment to know the signs of a recurrence/ spread, to ask questions, to be offered more scans, more often because one clear mammogram doesn’t mean you are cancer free forever.

I want you to understand that at the end of the day cancer doesn’t care. It comes for Olympic champions and children. For men and women, for people who are fit and healthy, people who eat well and exercise. It can come back if you take the drugs that reduce the risk of that happening. If it makes you feel better to think it only targets people who eat too much sugar or are couch potatoes then think that – but it’s not true – some of those people will never get cancer. However much you want to believe it there currently really is no way to prevent cancer returning or to prevent it in the first place – the risk is always there for everyone. Yes, some people are more at risk than others, but the reason anyone gets any kind of cancer is luck, a toss of the coin, a throw of the dice. Cancer is a complicated dance that messes with your mind and tries to destroy your body. It’s complex and heartbreaking. And yet still I believe.

I believe that one day there will be a cure, that one day there will be treatments that can target the cancer and spare the rest of our beautiful bodies, that science is remarkable and that scientists will be able to outsmart these pesky cells. One day. But right now, the reality is that this is a brutal, unpredictable disease that will continue to kill beautiful people like the woman I met in my exercise class. Let’s not pretend that’s not true because it's makes us feel better. Rather let’s do something to find a cure and more treatment options..because we can, and we must. Because most of all I don’t want you to know what living with metastatic cancer feels like.