Ten years ago today Sarah and I got up worried and early to begin one of the longest days of our lives. We travelled to the Royal Hospital here in Liverpool, to the Rapid Diagnosis Clinic, to find out what we found out.
And ten years later part of me finds it hard to travel back to what Sarah has written here. But most of me is immensely relieved, and grateful, that she is alive to write it. And that the years have in no way dimmed her fire and passion for our National Health Service, or her determination to keep it safe from officious predators, as you’ll see when you read on.
This is me on the 22nd of February 2007. It is the day after I was diagnosed with breast cancer, age 43.
So today, the 21st of February 2017, marks ten years from that diagnosis. There is no whoop of delight, no fist pumps here. No, this is not a celebration. It is a mere observation of a fact, a fact that I am still here to observe. And of all the questions I asked that day ten years ago during the hours in the hospital, the main question, the one I remember the most, was when I said, ‘Will I die?’
But thanks to modern medicine and surgery, some great doctors and surgeons, a hefty dose of luck and some of my own tenacity, I did not die of breast cancer. At least, I haven’t so far. The reality of this fickle disease is such that I can never say I won’t die of breast cancer, until I have died of something else. The reality of discovering that fact is pretty sobering. A sword of Damocles. I have learnt to live with it.
And yet, I found myself in a culture, post-diagnosis that wanted me to be a ‘survivor’. That I could somehow ‘kick cancer’s ass’, and in breast cancer culture that would often involve wearing pink.
Here I am a year after diagnosis. Still feeling pretty pissed off. Treatment and surgery continues. There isn’t an end in sight at this point. I am not ready to wear a pink t-shirt and declare that I am a ‘survivor’. I still won’t use that term myself. What exactly am I supposed to have survived? And, by this stage, I also know that someone with the same diagnosis as myself, with the same treatment, may not be alive in five or ten years’ time. Would that mean that they didn’t ‘fight’ hard enough? How I instinctively hated these battle terms we use for cancer.
But I do find myself surrounded by a culture that didn’t want me to express anger, I was supposed to ‘be positive’ and that positive attitude would mean I too could rise to the status of survivor. How could this be? I questioned and argued, I even wrote a book – Being Sarah – and went on to do media interviews and talk about the ‘negative’ experiences of being a breast cancer patient, the reality of multiple treatments and surgery, and the ever looming risk of recurrence. I felt very alone at times.
And then, thanks to social media, I met my dear friends Rachel Cheetham and Gayle Sulik.
Here, finally, were friends who I could discuss the myth that if you didn’t fight hard enough, then you had failed.
Rach died just over a year after we’d become close. She was 41. She didn’t ‘fail’, in fact she didn’t fight, she quite simply, like me, accepted her treatments and made the best decisions she could based on the information she had. She died of secondary breast cancer. Five years on from then I still miss her. I wrote about her gifts to me as I observed the third anniversary of her death in 2015 – I remember you.
Gayle is the author of Pink Ribbon Blues: How breast cancer culture undermines women’s health. She has an insight into the culture of breast cancer that really helped me feel that I was OK to feel what I was feeling. That expressing anger doesn’t have a place in the pink culture, that I am expected to ‘live up to the ideal, that women with cancer are supposed to be incredibly tough, but never too manly.’ Please do have a look at Gayle’s first comic strip here. This is an extract:
The sense of your experience being not acknowledged was something that I also found. It was alienating and strange. I still find it odd that when bad things happen to humans, often other humans don’t ask us how we are.
At diagnosis, among the myriad of reasons I have to feel pissed off – dying being one of them – I am also fed up that I am now ‘a patient’, and what that will mean. Hours of my life in waiting rooms, and recovering from surgery and side effects of drugs. How I disliked being a patient.
Although I have nothing but admiration and pride for the NHS, there were times when I felt the whole system was not ‘patient-led’, a word that was used a lot during my treatment. This was the opposite of ‘doctor-led’, meaning that the patient could be highly involved in making decisions about their treatment.
Anyway, a few years ago my surgeries ended and I was gratefully discharged from all my cancer clinics. I’ve rarely visited my GP since then and thankfully it’s only been for minor things. But this last week I now find myself again in the NHS, or trying to navigate the NHS, for treatment for Dupuytroyns contracture (a benign but frustrating hand problem, which is often hereditary, as it is in my case). My GP has referred me to an ‘assessment’ at the hospital, as she tells me she is no longer ‘allowed’ to refer me directly to the hand surgeon she otherwise would have. At the hospital last week I am seen by a physiotherapist. (My GP has already told me physiotherapy wouldn’t be a part of my primary treatment for this, only for recovery if I had surgery, but here I am being ‘assessed’ by a physiotherapist?)
I won’t bore you with the details, but my appointment was brief, and I didn’t even see the colleague who the physiotherapist went to discuss my case with. He simply returned with the news that ‘a health professional’ has decided that I am not eligible for treatment until my condition considerably deteriorates. Despite the fact that everyday activities – like driving, carrying bags and sea kayaking – are becoming increasingly difficult for me. I left the hospital feeling like I had just come out of a scene in ‘I, Daniel Blake’ – Ken Loach’s film released late last year which looked at the effects of austerity and its bullying culture on the UK social care system. And I am now very angry.
I return sorrowfully to my GP surgery that afternoon. When I explain what has happened to me at hospital I’m told that that, well ‘some people milk it’. Do they? So, me as a self-employed person asks for a referral to hospital and turns down work (and therefore income) to keep the appointment. And is denied access to early stage treatment my doctor thinks could improve my quality of life?
I am now in discussions with my GP to navigate the system and to be referred outside of Liverpool to find someone to treat me. This being by no means guaranteed.
So, I am sad to return to the NHS after ten years and find that it has been changed in this cruelly impersonal way. That a ‘health professional’ (or decision maker) and not a doctor can now be allowed to make a decision to keep me off a waiting list until my condition gets much worse for me and much more expensive for the NHS to treat, even though intervention at this stage could mean that I avoid surgery at a later date.
This is not the NHS that saved my life. Not an NHS worthy of the wonderful doctors and nurses who cared for me in my hours of deepest need. This NHS has been grievously interfered with and I am furious about it. Furious and worried that people getting the diagnosis I got ten years ago might soon face not getting the access to the NHS they have already paid for, as of right.
And please do go and have a look at My friend Gayle Sulik’s comic strip about the not at all funny world of being a breast cancer patient.