This post is a guest piece from my partner Ronnie Hughes. Ronnie has written before about why we walk together, and here he shares his experience of being my carer, and how breast cancer affects his life as well as mine.
“I am in the waiting room staring at the message on my phone. The message Sarah has just sent from the other side of the doors they won’t let me through. The doors of the Rapid Diagnosis clinic. The message says ‘It’s ultrasound next’. It will be another hour before they let me through the doors to care for a terrified Sarah. But with that message, for me, it begins.
And we enter the whirlwind of cancer. The whirlwind so accurately and even thrillingly described by Sarah, in her book, that there’s no need for me to repeat the story here. But I do have things to add. Because two lives are changed on 21st February 2007, Diagnosis Day. And one of them is mine.
Early days, we cling together, shocked and ignorant, staring at Sarah’s mortality. She asks me to help her start documenting this, an instinctive artist even in the middle of the biggest crisis in her life. So the stills camera that was bought for holidays and good things, as well as our work, is cradled in my hands, focussing on Sarah’s bruised breast. And soon enough, on the scar where her breast used to be. Hundreds of photographs, and hours of filmed interviews follow. It helps me, in a way, to feel useful and objective. But it also distances me in that way cameras do, so I wonder, even now, if I’ve yet felt all the grief I’m going to?
I soon begin to realise that this isn’t an interruption that’s just happened in our lives, but a profound change. And, without knowing it at the time, I begin to over-function.
This is what it looks like. It’s a simple enough word, ‘carer’, but the carer that I become covers the stuff that you’d expect – shopping, cooking and coming to all the appointments. Together with: guardian of Sarah’s time and privacy, from all the well meaning ‘cancer cures’ people are suddenly ringing and emailing with; temporary Chair of the Allotment Committee, thankfully very temporary; research assistant on cancer and other technicalities (like ‘What’s the best way for me to start my own fund-raising website, today?’); travel agent, for the national tour of cancer doctors we embark on; comedian, for those days when laughter is the only medicine likely to work. And I work. Relentlessly.
Because we’re a self-employed, two person, company (a sense of place), and then we become just one person – me. And for what I then don’t realise will be the next four years, it will be more or less down to me to bring the money in. So I work. Too hard. Alone. Like our lives depend on it. I don’t grieve for what’s lost. I stick my head down. And I work.
We read all the books. Text books, memoirs, self-help, campaigns. And one book tells me that carers need to take special care of themselves, as many fall seriously ill while looking after people with life-threatening diagnoses. They recommend counselling, time off and asking for help. I ignore all of these, because they don’t apply to me. I’m super-human after all. I recognise I have needs, but they’re always going to be taken care of ‘some day’.
And I am achingly and howlingly lonely. Sarah and I have always been very private people and just don’t have the kind of caring network, at this time, that the books tell me to use. So I fall into a rhythm of working and caring. Years pass. Sarah on her chaise-longue in the living room, recovering from the latest surgery, or comatose on the latest hormone treatment. Me, next door to her in our studio, or out with customers, working.
There are interludes. Our friends Dave Parrish and Brendan Byrne stay close, and obviously Sarah’s not comatose all the time. But the brightest interludes are the Ellie days. Ellie, my beloved granddaughter, who comes tumbling into our lives every Monday, and gives us both a holiday from cancer. So we can concentrate on more serious things like, ‘I think there might be a crocodile in the fridge!’
Then three years in, spring 2010, I burn out. I come to a standstill and can do no more. It all gets too much for me, added to which, Ellie’s been removed from seeing us, for reasons I still don’t fully understand.
‘Some day’ has arrived. I finally start seeing a counsellor, Jo, and listening to a description of how I’m living my life, she introduces me to the phrase ‘over-functioning’ and we start to slow my life down and open it up.
I take two months off work that summer. Camp with Sarah. Walk the hills of South Wales on my own. Go to Scotland and learn to bake bread. Read books that aren’t about breast cancer. Get back in touch with my sister Debbie and my oldest friend Janet. Breathe a bit.
And it works, while I’m off. But when I come back there’s hardly any work. Because I haven’t been looking for any. So I start again, over-functioning, over-planning, mind-mapping everything. Thinking too hard, thinking that if I’m in control, then nothing will go so wrong for us again.
Then in autumn 2010, Sarah’s book comes out. And for a while we add ‘Campaign Director’ to my list of functions, as we try to get the British media and other European campaigners seriously interested in cancer prevention. We do make progress, but it’s really Sarah people want to talk to. She’s written the book, it’s her story. So I stop being a campaign director.
And this spring, during a visit to the doctor for a chest infection we both can’t get rid of, I get my blood pressure taken. It’s high and it stays high. So I have to slow down, begin treatment of my own, and begin looking after myself better. Every day, not ‘some day’.
Because I’d like us to grow old together. To not do so, after all this, would seem unfair.
And I’m still Sarah’s carer. I can’t not be. She’s the love of my life. And there’s no point looking back on these years and wishing I’d done anything differently. The only time I can change things is right now. And right now I know I am a more skilled carer than I was. I’ve put the time in. I recognise the bad days when they arrive. I know there’s no such thing as a routine test – or routine hospital appointment. They’re all checking now, checking for cancer.
But now I care for me too. This summer and now into autumn I’m getting fit, running, jumping and boxing with our friend Karen. I’m still talking and reflecting with my counsellor Jo. I’m walking the hills and coastlines of western Britain with my beloved Sarah. And I’ve just bought my first serious hat! So life is getting better.
And as for work, I don’t do nearly as much of it as I used to. (These last four and half years have shown us how little money we can really live on, so we can, in fact, work less). I’ve finally started taking my own advice and only doing work that I seriously love. To qualify for being done, all work now has to contribute to my well-being, to the deep need for joy and fulfillment that I now want from all the rest of my days. I’ve stopped planning and I’m getting better at enjoying my life, right here and right now.
The whirlwind of worrying that began on Diagnosis Day is calming down now, to the steady background worry that all cancer patients and their carers have to live with. Will the cancer come back? Because it often does. Our lives are changed forever by this, profoundly changed. Being realistic and not knowing how long we’ve got, we treasure every day, we treasure each other, we treasure the friends we’ve found, we treasure what we choose to do.
And I can live with that. We both can.”