I Don’t Look Like I Have Incurable Cancer And I Certainly Don’t Feel Like I Do

What today’s approval of the lifeline drug Perjeta on the NHS means to me
Bonnie Fox

Bonnie Fox was diagnosed with incurable metastatic breast cancer in July 2015 when she was 37, and her son was just four months old. Here she talks about what today’s approval of the lifeline drug Perjeta on the NHS means to her.

I sometimes wonder – what was I doing the day my breast cancer spread? Was it an ordinary day? Was I doing something mundane like the washing up or worrying about something insignificant? Was I laying there worrying about my unborn baby’s movements or trying to breastfeed him, painfully? Did I notice anything the day my breast cancer made its catastrophic exit from my breast and sealed my fate?

I was 37 when I was diagnosed with secondary (or metastatic) breast cancer – the disease had spread before I even knew I had it. My baby boy was just four and half months old.

I had no family history of the disease and hadn’t previously been diagnosed with primary breast cancer. Just a few miserable and difficult months of breast feeding had led up to my diagnosis. Our road to pregnancy had been long and complicated and we were incredibly lucky to finally conceive through our first IVF cycle. I’d spent my entire pregnancy in a state of intense anxiety, convinced something would happen to my unborn baby. I’d even paid for private scans and tests to check all was well. I felt like I’d dotted every ‘i’ and crossed every ‘t’ when it came to keeping him safe.

But yet I hadn’t looked at myself and paid any attention to my own body, and failed to spot the monster that was growing within my breast. What if I’d got that crease checked out while I was pregnant and they had found the cancer? Could I have had the treatment I needed during pregnancy? Could I have stopped it before it metastasised? The questions are endless and although I am eternally grateful for the safe birth of my son, I know that I’ll never stop feeling like a failure for not finding the disease sooner.

I think it’s fair to say that a lot of my friends and family don’t really understand what secondary cancer (otherwise known as stage 4, metastatic or advanced cancer) actually means. And that’s fair enough as prior to diagnosis; neither did I. Secondary cancer means cancer that has spread beyond its primary site – in my case my breast cancer has spread to my liver and my bones. Once breast cancer has spread beyond this primary site to other parts of the body it is INCURABLE. It can be controlled with medication, and people can live well with it for many, many years, but you can never be free of it. You can get to a point where your body is free of any active or visible disease (as I am now) but this can change at any point. Secondary cancer means treatment never ends – there is no ringing the bell at the end of treatment, no ‘getting through it’, no calling yourself a ‘survivor’ and no opportunity to say that ‘I kicked cancer’s butt’. You live it each and every second of every day, but if you’re lucky, some days you get to put it in a box at the end of the garden, forget about it just for a little bit, and get on with enjoying life.

I have been living with secondary breast cancer now since July 2015 and am incredibly fortunate that I’ve responded very well to my first line of treatment and have remained stable on it since finishing six gruelling cycles of chemotherapy in December 2015. Every three weeks I go to the Royal Marsden in Sutton to receive Herceptin and Perjeta (the current first line of treatment for HER2 metastatic breast cancer in England) which are pumped painlessly into my veins via a Power Port I have fitted to my chest. Treatment is about the only opportunity I get these days for some ‘me-time’ (a rarity when you have a toddler), so I look forward to respite that it brings. I leave two hours later with the drugs coursing through my veins, feeling nothing other than slight tiredness. To begin with I found it slightly surreal that my day could consist of an ordinary morning at toddler group or a trip to the supermarket followed by an afternoon at the hospital to receive drugs that are essentially keeping me alive. And that’s the truly wonderful thing about the combination of Herceptin and Perjeta – I feel SO good on them. I don’t look like a cancer patient and I certainly don’t feel like a cancer patient. The side effects are so minimal it’s hard to distinguish between them and the general fatigue I feel from having a two year old jump on me at 6am every day. I can carry on with my life as normal and don’t have to tell people I have cancer unless I want to. It can feel like you’re leading a double life as it’s very hard to reconcile the fact that you look and feel so well, yet have this ticking time bomb within, but treatment has now become part of the general routine of life and I am thankful every single day for the normality it allows me.

Life with secondary cancer, however, can still be a constant juggle of hospital appointments, work (I still work two days a week) and childcare – and that’s even while the going is good. As well as my ongoing treatment, I’m also a patient at two other hospitals – one for regular heart checks (one of the possible side effects of Herceptin is that it can damage heart function) and at another for regular checks and procedures on one of my kidneys, another organ damaged by the initial onslaught of the disease. And then there’s the counselling appointments and support groups to help keep sane, the complimentary therapies, plus trying to squeeze in time for the research into new developments in treatments, trials and alternative remedies. I’m currently scanned every six months which brings the most hellish anxiety (‘scanxiety’) I’ve ever known. I cannot express the fear you feel while waiting for your consultant to enter the room and give you the news. You hold your breath. You cannot concentrate. You can’t even speak. You know that one day it will inevitably be bad news but good news brings a temporary reprieve and feels like the clock has been reset once more. You feel light once again, you feel full of joy. You can breathe. You can go ahead and make some plans for the next few months after all.

For me, because I’m immensely fortunate to be stable on my drugs, living with secondary cancer is this strange double life - a ‘twilight zone’ of feeling perfectly healthy but at the same time, living with this incredible uncertainty and knowing that things can change at any time. But actually, I’m glad for the heads up that secondary cancer has given me. It’s given me the most enormous kick up the backside to get out there and do all the things I want to do. We all should have a working bucket list – terminal cancer or not. Since being diagnosed with cancer I’ve had some truly incredible experiences and have been to some amazing places. I’ve actively gone out there and planned things I’ve always wanted to do but have never gotten around to. I’ve met some very special people and found support and friendship in places I never knew I had. I’ve changed my diet and conversely, I actually feel healthier than I’ve ever done. I don’t let trivial worries get me down (let’s face it, when compared to the prospect of dying, most things seem trivial). I’ve found a joy and love of nature far greater than before, and above all, an immense appreciation and gratitude for just being alive. I have never felt so content.

Of course there’s always the huge looming question of ‘how long do you have left?’ But the reality is that none of us know the answer to that. People often ask me ‘how do you do it?’ But the simple answer is, we are all doing IT right now. Many years ago I remember seeing a man laying unconscious in the middle of a shopping centre while CPR was performed on him. Strangers were standing around him in a circle, staring with morbid fascination. It occurred to me that we all somehow carry on with this life knowing that this could be any one of us at any time. It could be a paralysing thought but somehow we all carry on, we all make plans, enjoy life and forget that we’re all mortal. We just do it. So when you ask me how I do it – that’s the answer. I’m just doing what we all do every single day. Living, breathing and making plans and life has never looked more beautiful.