Under wraps

Dear readers, it’s fair to say blog posts have been hard to come by lately for me. What with the unexpected death of my dear friend Rach in February I find myself immersed in grief and selfishly only doing things for myself. Gardening and creativity.

But, some days, for all your experience, all your wisdom, and for all your just knowing things the way only women do, you walk into a situation where you cannot be other than belittled and patronised. Just like I did last week. I  wished and wished I could have shared this experience with Rach, I can just imagine her response. And, equally, I can also hear her saying, ‘You have to blog about this Sarah, you just have to!’ I know she would say that.

Here’s what happened.

The other week I received a phone message out of the blue from a film producer who’s making a documentary about ‘the dangers of breast screening’ – his words. He’s someone who I know in Liverpool and very occasionally, like every few years, will bump into him, but we’re only on that level of knowing each other. I’m intrigued by his message, and to be perfectly honest, slightly flattered. I assume that in my persona of ‘Author, Being Sarah‘ I am considered an opinionated worthy interviewee. As a breast cancer patient, I have not expressed any opinions that breast screening might be ‘dangerous’, although I am fully aware of the mammogram debate and the mixed opinions about its efficacy. In fact, I need write no more as my good friend and fellow blogger Kathi (aka The Accidental Amazon) has written a full and excellent explanation about mammography which you can read here. Basically, as she concludes:

‘We need better screening tools.’

Sigh. I think that just about sums it up for me. But, nevertheless, documentaries about breast cancer don’t pop up every day, and although I am self-confessed to be bored of the subject, I’m still intrigued. I call Dandy back (no that’s not his real name, but think of it as protecting the innocent at this point, you may change your mind when you’ve read everything I have to say), he assures me that he has primetime viewing lined up, that this is a serious documentary. And I arrange to meet up and talk a bit more about the project, so I can decide whether it’s something I want to do. I mean, I am after all ‘Author, Being Sarah’ and I have a reputation to maintain. At least, I thought I did.

And it is with some caution that I proceed to do this, because in my experience Dandy’s not one for giving much back, but will easily gladly take. However, I do want us to change the conversation on breast cancer, I do want to see us asking the difficult questions, informing about real choices, about real prevention. Of course I do. I don’t want my friends to die of breast cancer. And, selfish me, I don’t want to die either. So if there’s a serious platform, a place for real debate, then let’s use it.

So, after my weekly piano lesson in town I make my way to Dandy’s office. I’ve already sent him some links to some blog posts about breast cancer culture, and very politely (well I thought it was polite) asked if he’s considered that for the documentary. I write:

‘I don’t know if you have broadened your research from ‘screening’ to the wider breast cancer culture? Or if you think you might? It’s certainly something that I find my fellow bloggers are writing about – the wider culture is too frivolous and ‘happy’ and it makes it hard for us to have ‘serious’ debates – about real prevention, or treatment choices.’

Dandy greets me at the door and asks me if I’ve had lunch, which I have, and says, ‘We are all over the road.’ Er…. we?, I thought I was just meeting Dandy. I am ushered across the road to the noodle bar and meet ‘the team’ – Robert and Mallard – who proceed to eat their chicken curry and rice while I drink sparkling water.

‘So?’ I begin. ‘Is this something personal? The documentary? I mean, why? You have a personal connection about breast cancer?’

All reasonable questions I think. Robert says nothing and continues to look at the ‘Open your eyes‘ brochure which I have presented them all with (just as well I made several copies, I thought I was only meeting one person). In fact I don’t know what his role is – a camera guy maybe? – but he looks distinctly uncomfortable that I even said the words ‘breast cancer’. And then Dandy, who is sitting opposite me, switches places with Mallard, and Dandy says, ‘I’ll let him tell you, he’s a homeopath.’

At which point, of course, I say, ‘I’ll leave now.’

Well, no I didn’t say that, but I thought it. And I sit there and for the next ten minutes I get the full story of Mallard’s wife, diagnosed with ‘96% invasive breast cancer’ six years ago, and she declined all treatment – especially surgery. I probed and tried to get a bit more information other than ‘96% invasive’ but no, I can’t tell you what that means either.

Anyway, the good news is that she is still well, and free from cancer as far as the screening machine he has now invested in is able to tell us. Cynical? Me? Let me think.

‘So what was her treatment then?’ I ask. Although I sort of had a feeling I already knew the answer. ‘Well,’ says Mallard, ‘she cleaned up her act. I mean really cleaned it up. I mean she only ever drinks water now.’ Oh, I get it. It’s another one of those ‘blame the patient’ scenarios. ‘So, she found another medical practitioner to help her make informed choices did she?’ I ask. ‘Oh no,’ says Mallard, ‘she didn’t need to.’ And he smugly puffs up his chest in a most revolting way, points at himself and says, ‘She had me.’

At which point, of course, I should definitely have said, ‘I’ll leave now.’

But, for some reason, not least that I am in the corner of a table with three men surrounding me, I stay where I am. So Dandy, who has now finished his curry, decides to pay me some atttention, after he’s checked his phone messages of course. As he does so, Robert, promptly decides it’s time to ‘head off’, but first asks me for another ‘Open you eyes‘ brochure, saying something about his mother, and I am left sitting opposite Dandy and Mallard.

quackery

But before Dandy says anything, Mallard, who has an unsettling way of staring right at you when he speaks, asks me, ‘So I mean did your doctors tell you your treatment would CAUSE cancer?’ I give him a curious look. He carries on, earnestly, ‘Did they tell you that?’

I must look surprised because Dandy interrupts. ‘Look,’ he says, ‘we’re trying to present a balanced argument that will help women make decisions about treatment.’

‘OK,’ I say. ‘That sounds fine, but Mallard here makes it sound like there’s a conspiracy theory going on.’

‘Oh no,’ says Dandy, ‘it’s not a sensational-type documentary.’

At which point Mallard suddenly looks out of the window and points. I follow his finger. ‘Now, that’s the problem,’ he says. I look at the innocent blue sky, containing equally innocent-looking white fluffy clouds. ‘Look again,’ he insists. And there, the familiar streaks of aeroplane vapour trails, contrails as they are called. ‘It’s them,’ he goes on. ‘They are full of barium and that’s why we’re all getting cancer.’

Ah, well thanks for that explanation!

‘Well,’ I say, and for some reason, I can’t think of anything else to finish the sentence. I think Dandy senses we might have gone off-topic here, and that he might be losing the interest of his potential interviewee and brings the conversation back to the all-important Documentary. Dandy tells me how they’ve interviewed some ‘really prominent’ people in their field and how great it would be to have a patient talking about how they questioned their treatment options.

‘So who have you interviewed?’ I ask. A fair question. ‘Oh well,’ says Dandy, and they both squirm a bit, ‘we can’t tell you. It’s under wraps.’

I smile politely and look Dandy straight in the eye. ‘Oh OK,’ he says, ‘we interviewed the guy who set up the screening programme in the UK.’ No kidding, and no, I have no idea who that is either, I think I say something sarcastic like, ‘Oh, that famous then?’

‘Well we’ve also interviewed a load of surgeons and doctors. And I tried to get the tit-man.’

What? The tit man.This hole is getting a whole lot bigger. ‘No really,’ says Dandy, ‘he’s a breast surgeon and that’s what he calls himself.’ I’m not sure whether Dandy thinks this is good or bad.

He carries on, ‘I mean, come on, you know how women are prodded and pushed through the system. How they are shoved into mammography, given no choices about having surgery. How horrible is that, cutting off women’s breasts?’

So, I think to myself, the main objection to breast cancer treatment, or surgery in particular, is cutting off women’s breasts. Actually, in my opinion, it’s not that horrible if it means you don’t die. Sure, I’d rather we didn’t have to do that, but it’s currently the treatment we have. And it’s not a choice I liked having to make, but I did make it and consented to it.

At this point I think of my caring surgeons, especially my breast surgeon and my plastic surgeon. I think of the way I have been carefully treated, how everything I asked has been answered, how what they did for me was done out of a deeply altruistic desire to frankly keep me alive.

Mallard jumps in, ‘And do you know what the food is like on a hospital ward?’

‘Of course I do,’ I say, ‘I’ve had seven surgeries. I do know.’

And I can feel that familiar sensation. The helicopter feeling as I have come to recognise it. The one where I am going to take off. My mouth opens. My brain is not engaged. It doesn’t need to be. I am about to rant.

‘Let’s be very clear,’ I say, ‘I will not, under any circumstances bash the NHS. Ever. My NHS provides care free at the point of need. God help us if that’s ever taken away from us. That’s not what I want. My NHS has its failings, of course it’s not perfect. But it’s the best we’ve got. I’ve been in a cancer clinic with a till at reception, in the US, and that’s not what I want here. Do not think, even for a minute, that I will say anything against the NHS. I am sat here in front of you, over five years from diagnosis, because of the NHS. Sure I asked questions, but I never assumed for a moment that my medical team wanted anything but the best for me.’

I tell them all this. And more. I am angry, I rage, I feel personally reponsible to defend the NHS. My NHS. The NHS that is at the core of the opening ceremony for The Olympics, the NHS with patients at its core. My NHS.

You see, these ‘practitioners’ it would suit them, wouldn’t it? If all patients turned their back on the NHS, decided to ‘go private’ to pay for all their treatment. But you know, we are fools if we think that could happen. We never see our medical bills, we have no idea how much our treatment costs. Maybe we complain about how much tax or National Insurance we pay. But you know, in relation to how much we get, it’s worth every penny – in my opinion.

Well, says Mallard, ‘I have to admire your passion.’ Which I think is a way of saying, ‘I completely disagree with you.’

Hey ho. But he is undeterred. ‘Did you know,’ he says, ‘that there are 300 cures for cancer out there? Did you know that?’

I can’t speak. I can’t believe that this meeting is turning out so badly, that I want to be anywhere else except here. But I feel obliged to put this man straight.

‘Did I tell you my dear friend died this year. Age 41. Of breast cancer. Do you think I believe there is a cure for cancer, because if there was she would have found it. So if you really think there are 300 cures we don’t know about then I think it’s fair to say you are in the realm of quackery. Because,’ I continue, I can’t stop,’my quack-o-meter has just gone off and it was very, very loud. In fact, you might have heard it yourself.’

‘Are you calling me a quack?’ says Mallard.

‘I didn’t say that,’ I reply, ‘but as a homeopath I’m sure it wouldn’t be the first time you’d heard that. And, please don’t give me details about these 300 cures for cancer, let’s not go into details here.’

At which point, of course, Mallard does begin to tell me the four homeopathic remedies which do cure cancer, and continues to name the obscure ‘practitioners’ who have come up with ‘cures’ that cost only a fraction of the cancer drugs that the pharmaceutical companies are selling to us.

‘Please,’ I say, ‘I didn’t come here to discuss that. That’s your opinion.’

It appears he has not heard me. ‘Well, I can lend you a book about this particular practice which they are using in the US which is very successful, I think you’ll find it very interesting.’

I stare at him. I can’t believe this. ‘Do you know how many books about breast cancer I have read? Do you know how f***ing bored I am of the subject?’

At which point Dandy says, ‘How what?’

‘Yes, that’s right,’ I say, ‘You heard me right the first time, I am fucking bored of the subject of breast cancer.’

Yes, I am fucking bored of the subject of breast cancer…. And, dear reader, I am fucking bored of the quacks and, yes, film makers, who see the likes of me as potential income streams for them. But I didn’t say that, not then. I was too upset. And I was on my own.

So how did it end? The Quack-man finally shut up and the Dandy-man tried to smooth things over, saying it was fine if I did or didn’t want to be in the film. (As if?) And finally I left. Like I should have left before it all started. Before one woman walked into a room where three men were going to bully and patronise her about breast cancer, women and screening.

Of course I was angry about this. Of course I thought, in that grown-up way, that I could put it behind me as a learning experience. But, you know, if this is the level of conversation we’ve having on breast cancer, we won’t get anywhere. My good friend Gayle said it gave me a chance to keep my quack-o-meter well oiled, to keep it in good working order, for the next time I need it.

Please, time for informed discussion. Time to change the conversation.

*******

The ‘Open your eyes‘ brochure I refer to here is a small document I wrote and produced last October, which I described as ‘the little book of big breast cancer facts’. The two biggest facts, in my opinion, are:

We don’t know how to prevent breast cancer.

There is NO CURE for breast cancer.

You can make your own copy, all you need is a printer. Instructions and downloads are here, and it’s available in A4 and US Letter.

Gayle Sulik, author of Pink Ribbon Blues, has written her suggestions about what we can do to spur the public conversation and the movement in meaningful ways. See her ‘Tools for Action‘ for suggestions about what you can do to change the conversation on breast cancer.

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28 thoughts on “Under wraps

  1. Oh, Sarah, I can see exactly how you got sucked into this interview. A bit of flattery and ego boosting will do it every time. I despise bullies, and especially those who tout “cures” and use scare tactics regarding environmental causes and what we consume. These dudes should have known better than to request that you help them out. If they had read any of your literature including blog posts and seen your films, they would not have wanted to engage you.

    I know someone who decided that Chinese treatment with herbs would be enough to eradicate her early-stage breast cancer. She wouldn’t even go for surgery to remove the tiny lump. No chemo would be involved. I thought she was nuts, but of course, I couldn’t tell her that. People get sucked up into this quackery every day. And it’s so sad.

    Thanks for telling this story to warn others and dispel any of their false hope in 300 cures and avoidance of surgeries. You go, girl! Rachel would be proud!

    XOXO

  2. You just encountered three, wacko, uneducated nut jobs, so I’m not concerned their “film” will ever be played by any reputable cable network or online source. It will, however, be on their website, to sucker other uneducated people who are looking for an “easy” treatment. God, help us!

  3. Sarah, I could rant right along with you over the idiocy you had to deal with… I actually had someone tell me when I was dx that if I ate three tablespoons of asparagus a day, my cancer would go away. And I struggle to maintain a friendship with a woman who’s been my close friend for many, many years, who has been a true friend through many difficult times, but then turned around and implied that my cancer was my fault. I still haven’t healed that wound very well.

    But what I want to address most of all is your statement, “I find myself immersed in grief and selfishly only doing things for myself.” There is nothing selfish about healing from grief. There is nothing selfish about your friendship with Rachel. I know this may sound obvious to people, but it was a revelation to me to realize that the depth of my pain over the loss of someone I loved was equal to the depth of my love. You and Rachel shared a deep and powerful friendship and I suspect she most of all would want you to take all the time you need to do what you need to do for yourself, to heal. Be creative. Garden. Walk. Knit. Cry, and laugh, and have some ice cream… Big hug, my botanist friend!

    • Ouch, Carol, to be told it’s your fault is not nice. Sorry to hear that. Any friendship would falter at that I think.
      And thanks ever so much for your kind words there about grief. I was unexpected for this. The grief… I shall continue to be creative, and especially eat ice cream. Big hug back to my favourite botanist over the pond!

  4. Sarah, how awful to be ambushed like that. Your anger is absolutely, positively warranted, and I applaud your restraint for staying to hear them out. (My ire is up just reading this and imagining how it must have felt for you to sit through all that.)

    I suspect many of us have encountered friends or acquaintances who suggested that if only we ate, drank, exercised or, well, LIVED differently, then we could cure our cancer.

    If only, if only, if only.

  5. Dear Sarah,
    It does sound like you were ambushed. And no doubt if you had agreed to partake in the filming of this documentary you would have been taken out of context. What I find so interesting about this is that a) you have criticized the NHS in the past (even directly to your doctors), b) you have a clear environmental agenda, and c) you are always willing to rock the boat of complacency. These folks wanted to do all of those things but for different reasons, and it appears, without context, data, or a textured investigation of the topic. That’s where they failed. Miserably. There is no need for an anti-pink/industry bandwagon any more than there is for a pro-pink/industry one. I’m glad you’re out of the project! And, yes, I’m also glad your quack-o-meter is well oiled! You’ll be ready for the next one… — Gayle

    • Yes Gayle, exactly, the context observation is excellent – as I would have expected from you! You are so right – we don’t need ‘anti’ – we need informed discussion and change. Perhaps I should start selling quack-o-meters? They would sit well next to the shit filters!

  6. Dear Sarah
    THANK YOU!!! For being a voice in the cancer world–your words are a gift to all of us! Thank you for taking us on the journey of Dandy and the Quack Man–shame on them–good for you!! I could write a book about the “guilt” and “magical” treatments still being sent my way. Thanks again for your voice!

  7. Wow. There’s no question that these dudes intended to make an info-mercial for Mallard, not a documentary. I think it’s perhaps safe to say that you won’t be returning any more calls from Dandy any time soon. With ‘acquaintances’ like that…

    I’m glad your quack-o-meter is in good working order. Wankers…

  8. Good for you for telling those quacks off! That’s all we need: more people trying to exploit breast cancer. I, too, got excellent care from my doctors, who treated me like family. These gentlemen were quite ignorant. If there were even one cure for breast cancer, wouldn’t there be no breast cancer? And I, too, miss Rachel, and I, too, and sick of the topic of breast cancer.

    Great post, Sarah.

  9. Sarah, There’s so much to comment on in here, but first of all, I’m sorry you were subjected to all this in the first place. I also happen to agree with Carol Ann in her comment that you are not being selfish by doing things of late that bring you peace and healing. This is how you get through grief. I also really admire the way you calmly asked & answered questions. Your answers clearly went right over these bozos’ heads. And I love the way you defended your NHS. This makes me so envious, as I am quite disgusted by aspects of our healthcare system in the U.S. right now. It’s also notable to me that even in this crazy situation you found yourself in, you thought about Rachel. If there was a cure, surely she would have found it. Yes, indeed. Good for you for seeing through the quackery of it all. And yes, we do need to keep working on changing the conversation. It seems tedious at times I know, but really what else can we do? Thanks for writing about this just plain bazaar experience. We all have to stay on our toes don’t we?

  10. Excellent post! I was cheering for you as you told them off – do they not think that if there were really 300 cures out there that we would be hiding them? As a breast surgeon, I get tired of being accused of being part of some large pharmaceutical conspiracy. Seriously, if a real cure for breast cancer came tomorrow, I would gladly find some other line of work!

  11. LOVE LOVE the way you told this “story” … UN-fucking-believable. (You said it first, so I’ll say it here!) …. These men (and aren’t we all finding it a bit curious that it seems to be men… with sincerest apologies to the MANY MANY good men out there) are despicable. They know your story or they should have know your story before speaking to you. Did they really THINK they would get you to back this kind of quackery.

    Good For You…. The world is a better place because you stood up and spoke the truth. When the documentary comes out, be sure to let us know. We got a posse and we will slam them from every angle on both sides of the Atlantic and from every continent.

    xoxoxox

  12. I have heard this happen on several occassions where people want negative stories on the whole BC process and the NHS.. I’m doing the westminster flyer this year just to listen to what is truly happenin in the progress where treatment is concerned.. I want to hear it from the horses mouth and see what our MP’s are doing about improving services. I am tired of the scare mongering that these idiots create. They honestly do not understand how much damage they create. There is no wrong in changing ones diet and life style, but I am a skinny 5’7 women who ate all her greens and fruit. Who believes in walking everywhere and still does.. Yet lord knows why I am a type 2 diabetic with breast cancer with no history of it in the family.. I told my oncologist on Monday just before going back under the knife for my recurrance I am a bloody enigma cos I don’t fit into no jigsaw.. I agree Sarah it is frustrating when all you want is one thing and that is a long way off.

    Keep up the blogging and writing Sarah xxx

    • Thanks Sarah. For reading and for your comment. Yes, I don’t want other women to go through what I’ve been through, and I don’t want to lose my friends to cancer. I want a world without cancer. It’s that simple.
      I am very sorry to hear you have a recurrence. I wish you all the best with your treatment for that, sounds like it’s surgery first, so I hope that goes well for you. All best, Sarah

      • Yes Sarah knife first then chemo second followed by radio and herceptin.. There is one area they could not surgically removed only 3mm between my pectrual muscle and the LD recon near vessles that supply the recon.. but fingers crossed the chemo does its job even tho I’m dreading it.. i’ve had three yrs going back and forth after havin mastectomy with my regular appointments. They kept picking up tiny changes and on the 16th by chance I found a tiny 5 mm lump on my MX outside the margins of mammo machine. Had op to remove this lump plus one in my right breast.
        What frustrates me is no-one talks about the importance of the follow up appointments we face.. The image I get now is you have ur intial treatment and job done which is wrong of course.. these idiots and i’m sorry they are idiots don’t even know half of the story of being a BC patient… but i’m sure you opened their eyes Sarah

      • Oh Sarah, I am sorry. That must feel very daunting. Yes, you are right, there is a culture that perceives breast cancer as ‘diagnosis, treatment, recovery, survivor’ and little room for the other (common) experiences of recurrence, depression, or metastasis…. and I do think eyes need to be opened about that.
        I wish you the very best for your treatment.
        Best to you, Sarah

  13. Oh my goodness! This is just unbelievable. I missed your post earlier because our internet was off for a few days. It was probably suffering from shock after your post hit the blogosphere! There is no shortage of idiots to make us rage. I love your description of the “helicopter feeling”! And I wondered if Dandy’s surname was Lion?? ;)

    Big hugs, Sarah, and please keep raising your voice in response to the nonsense we are subjected to. It is so offensive and disrespectful. Thank you for keeping the spirit of Rachel with us, I cannot imagine how painful her loss is to you. Sigh. xxx

    • TY Philippa – that made me smile – the Lion surname. Massive jolt of ‘Rach’ memory straight into the veins too. Brought tears to my eyes. Even in my grief I feel I had to speak up about this one. Thanks for your recognition of the loss. It is huge.

  14. Pingback: The Meaning of Life and the Why of Blogging | Feisty Blue Gecko – a tail of the unexpected

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