Ten years

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.

*

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22nd February 2007

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.

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21st February 2008

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.

3-musketeers1

June 2011, Rachel Cheetham, me and Gayle Sulik in New Jersey.

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:

screen-shot-2017-02-20-at-16-47-56

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.dsc08559

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.

11 thoughts on “Ten years

  1. memoirsofahusk

    Sarah, I am so sorry. I had not planned to read this as, being a childless, wine drinking, ageing woman (!) I fear a diagnosis myself every time I go for a mammogram. But I did skim down to the end and saw something which made me read the lot. Forgive me if this is rather long…
    Several years ago I began to have problems walking. When it got bad enough to be noticed I went to the GP (Liverpool postcode) who referred me to a … physiotherapist. He (he) told me I was not going to be recommended for an operation as I was too young (ha). He frightened me to death with scare stories about operations and said even if I had the operation I would no longer be clambering up to rock shelters with my archaeologist husband in rural Africa on my routine trips there – an integral part of my life for decades. I felt devastated.
    Fast forward five years.Still frightened. Feel as if I am a woman of ninety not fifty-something and want, to be honest, on some bad days, to die. Return to the doctor who says … no operation, come back if it gets worse.
    Move house, outside L postcode area, go to doctor,. She (she) takes one look at me and says, since you saw a physio before, I’ll refer you straight to a consultant. Four months later I am sorted and walking miles and travelling and glad I didn’t die.
    Your post here came just the morning after I said to my husband, ‘for the first time in my life I could envisage sueing someone – the physio I saw in Liverpool’. My life was a misery, I stopped seeing friends because I was embarrassed and missed several occasions ditto.
    All this is minor by comparison with your cancer but very relevant to your hand. I knew that if I had been a man with an active job as opposed to a freelancer who sits at a desk (and honest about the level of pain I was suffering) I would have had that op. That man’s decision made the last several years of my life a misery, made me a recluse and will probably result in my life being shortened anyway. Stand up for your treatment. Claim it is totally destroying your ability to do your job. You need the treatment, those who play the system are not always bad but just trying to obtain the treatment they need – I don’t think some NHS ‘professionals’ realise that they are storing up worse by behaving in this way. Good luck. And sorry for the torrent of words!

    Reply
  2. bornagainst

    ” 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 ”

    I suspect that the brutal reality for the NHS, is that this process – of having a health professional ‘buffer’ between patients & doctors/surgeons – saves money, and saves money from this years budget. The availability and capacity of the NHS is being eroded and the buffer kicks people into the long grass so that the limited capacity is given to desperate people now – and hence waiting lists can appear shorter than they really are.

    Kicking people down the line, so that they are tomorrows problem, will also then be some future budget holders problem, and who knows, if you can be put off for 5 or 10 years, the NHS will be deliberately bankrupt by then and none of this will matter any more.

    Absolutely tragic.

    Reply
  3. Helen Devries

    The people milking the system are the private interests which successive governments have empowered to get their hands on public money, not the public who need the services.

    You keep fighting for the treatment to which you have a right.

    We needed the support of our G.P. in France to get appropriate treatment for my husband – and a real battle it was, too, so we have some idea of what you are up against.

    Cannot agree enough about the PC way of regarding the ‘appropriate’ way to react to cancer…as if anger is not permitted to women- and worse, not permitted to women by women!

    Also can agree on the way people just do not wish to know about what you are undergoing: I saw how people treated Leo as non existent when ill and when recovering, as if afraid that if they acknowledged things they might feel obliged to offer help.

    Reply
  4. hirstsj

    Sadly Sarah, I think your experience is more common than uncommon, here in Australia too. I had a problem with my fingers. My own doctor told me I’d have to put up with it. Thanks heavens I met someone at a function who told me otherwise, so I got very pushy.
    So, be bolshy. Make demands. Also, celebrate the fact that some of us think you’re pretty amazing and we didn’t even know about the cancer. The allotment. The kayak. The long walks. I, for one, love reading your and Ronnie’s posts.

    Reply
    1. Ronnie Hughes

      Thank you Sally. What you’ve said here is beautiful. We kind of felt we should celebrate this week. But the shape that’s taken has been to do ordinary things, some of them together. Ordinary is special.

      Reply
  5. nicktemple1

    Sarah – we haven’t met, but I know Ronnie a little. My wife Katie has just made it to 5 years after being diagnosed aged 33. No battles here either, or pink ribbons. Wishing you the best.

    Reply

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