The ‘M’ word

The triumphal image of breast cancer survivorship - not metastatic cancer

Breast cancer culture has become symbolised by images of women wearing pink who are celebrating their survivorship. Well, I don’t mind anyone celebrating something, I don’t even mind wearing pink. But this image, that is so strong, gives the impression that breast cancer is curable, that there is an end to it, that you can joyfully be who you were before. And some women can. Some women can’t. Lives are so changed by cancer, by treatments, by surgery, by multiple surgeries, by depression, by loss, by fertility issues… and on and on the list goes. And because of the fickle nature of breast cancer there is always the possibility of recurrence. Always.

This coming Thursday, the 13th of October, it’s Metastatic Breast Cancer Awareness day. Metastatic breast cancer is cancer that has spread from the original site of the breast. It is currently incurable. It is also referred to as Stage IV breast cancer. There is no Stage V.

When I ran for charity

2 October 2011, start of Speke Hall run

Yesterday morning I ran a 10K. It took place in the grounds of Speke Hall in Liverpool, a nearly 500 year old manor house near the river. No charity fund raising, just me, running. For the sheer pleasure of being able to. It was a humid damp day, but it was fun to do this with friends, and go for breakfast afterwards. There’s a one minute film of the run here.

Runs are often done to raise money for charities by people who’ve been treated for cancer. Me included. Last year, one of the goals I’d set myself was to run a 10K, and raise money for charity. The charity I’d chosen was Yes to Life, who had helped me during my treatment for breast cancer, and I wanted to say ‘thank you’ to them, and raise money for them so they can continue to help other cancer patients.

In November 2009, I had my sixth surgery following my beast cancer diagnosis in February 2007. I’m pragmatic enough not to say it was my last surgery, or that have finished my treatment and surgery. I’m still on prescription drugs, I still have regular check ups with various doctors, I still have minor surgery to finish my breast reconstruction. But, as far as I know, for now, I have finished the major treatment, and the major surgeries. For now.

Real?

Summer camping at Hill Holt Wood with Ronnie.

I’ve just been away on a short camping trip with Ronnie in a beautiful wood in Lincolnshire. We had one night alone and then spent the next two days with a group of people from Hackney Community Transport who we’ve been working with over the last seven months on their ‘social enterprise champions’ project. A fabulous experience. And it didn’t rain!

Back at home, and I’m going through my emails and there is one titled ‘Sad news about Jane Smith’. No, Jane Smith is not her real name, but she could be one of thousands of women like me, who’s being diagnosed with breast cancer in their early 40s.

I know immediately that she has died. Of secondary breast cancer. Of course, the email does not mention that, it says she had ‘a long illness’. We are spared the details. I feel so many mixed emotions. Including anger.

Show me the money

A couple of months ago I was just going into the swimming baths and a woman came in behind me and asked the receptionist, ‘Could I leave some leaflets for you to display about a local healthy eating and weight loss group?’ And the woman behind reception said without pausing, ‘No, we don’t display leaflets.’ So the woman with the leaflets turned round and left.

But that was blatantly not true, because on the counter, right there was a cardboard leaflet holder containing leaflets for a cancer charity’s ‘Race for Life’ event taking place in Liverpool. This event is not for a breast cancer specific charity, but the leaflet has a picture showing women in pink t-shirts, and the irritating slogan of ‘Join the girls’, (well it irritated me), implying that this is an event for women. At the time I had a sense of feeling that it was wrong, a health facility supporting a national cancer reearch charity, but not a local health group.

And, the ‘Race for Life’ event happened this weekend. I was reminded of that because one of my squash friends told me she was taking part in this event. I said, ‘I hope you’re not wearing a pink t-shirt!’ and she laughed. But she told me she was doing it with her friend, whose boyfriend’s mother has just been diagnosed with breast cancer and is now being treated. And she wanted to do something.

I totally get that. She wanted to do something.

I didn’t fight either

February 2011 – out walking in early spring

I keep thinking about that expression on Chemobabe’s recent blog post - ‎’I didn’t  actually fight cancer. The truth is, I got treated.’ And I keep coming back to wondering why we use the term ‘fight’ for cancer. Because I agree with Chemobabe, I didn’t fight either. I smiled at my surgeons, I tried not to be cranky with the nurses when I asked for pain relief,  I put my lippie on when I went to consultations, I tried to have a good attitude. But I know that none of that has any effect on the medical outcome.

In short, I just I did my best. I only ever felt that I was doing the best I could. Because why wouldn’t you just do that?

When someone else sees me undergoing breast cancer treatment, why do they call me brave? And why do some people want to label me as a fighter? I made my treatment decisions based on the evidence available to me – statistics and medical opinions. It wasn’t some kind of battle ground we were in, it was simply me and my doctors trying to give myself the best chance of staying alive. That’s not fighting, that’s just what we do everyday.

Sugar-coated wars and battles

I’ve had a number of responses to my question ‘What’s the word?’ – the word to describe ourselves after a breast cancer diagnosis: Not my old self? Survivor? Thriver? Warrior? Victim? Battler?

Well, during the years after diagnosis and experiencing various treatment and surgeries I didn’t want to use the words of war, the military language. But now… now approaching the end of my fourth year since diagnosis, I would describe this, at times, as a battle. A battle to get up, to get dressed. Some days. To get out of the house. To get myself active, to do things. My ‘to do’ list looks daunting. Everyting feels too much. And I am battling the demons of despair – attempting to keep them away anyway.

Young Frank (on left) c. 1941

I remember my father, Frank, saying to me, “Oh, I know why they call this a battle. It’s such bloody hard work, that’s why.” His treatment for lung cancer. Unsuccessful, his battle so easily lost. Are we battling a losing war? A meaningless war. This ‘war on cancer’ that Nixon declared in 1971. ‘A cancer culture that favored the war metaphor. Images of swords and shields, fighting words and slogans,…’ (Gayle Sulik, Pink Ribbon Blues).

I remember Frank in his dying weeks, reflecting on the events of his life and telling me about his Uncle Sam coming home from fighting in the Second World War. He describes seeing him turn the corner into their road, slumped, coming home and dragging his rifle along the pavement, defeated. Is that me too? That even if I’ve not been killed I am defeated?

Here we are then. Frank, Uncle Sam, JaneRA , my posts seem to be full of dead people – and me – trying to find some sense in it all.

Extract from Being Sarah:

What happens to us, the women, in terms of breast cancer is, I feel, marginalised, of less importance than if it happened to men. But also I think that we don’t make things harder, we don’t challenge. We are for the most part, compliant. We accept breast cancer and its treatments. We deal with it, and we deal with it well. As Audre Lorde said, we are not a horde of raging angry women descending on government asking them to start researching the causes of breast cancer.

But we should be.

Instead we are donning pink t-shirts to support our sisters, raising money for the cancer charities, who search for cures, more drugs. Yes I can see a cure is attractive once you have breast cancer, but what about prevention? Have we blinkered ourselves with pink-tinted glasses here? Pink, sickly pink, the universal colour of hope. Where wearing pink and the fluffy pink campaigns around breast cancer are the norm. The ‘sugar-coating of disease’, as Barbara Ehrenreich calls it.

How come breast cancer has risen to this status? To an almost glamorous level? Just how did breast cancer get to be so glamorous? I get sick of seeing all these images of smiling women proving that we can ‘beat’ breast cancer. That we can be ‘survivors’.  And I hate it. I do not want to be branded by breast cancer and wear pink t-shirts.

Women smiling through lost breasts, devastating effects of drugs and chemotherapy, women losing their most feminine identifiers, breasts and ovaries. But they are still smiling. They are survivors, they have fought, and beaten cancer. How I hate that terminology. The fighting and battling. These words we use for war.

And these women, these smiling women, they seem to say ‘It’s OK, because I have survived. So when it’s your turn….’ And here is the great unsaid – that your turn will come, because just look at the statistics – ‘When it’s your turn it will be OK,’ these smiling women reassure you.

It is profoundly not OK at all.

As I’ve said on here before, there are up days and there are down days. Up days contain no military metaphors at all, certainly not ‘victory’. But down days, like this one, do somehow feel like a battle. Confusing.

What’s the word?

What’s the word to use to describe what I am – in breast cancer terms that is? I personally don’t like the word survivor. I choose not to use that particular ‘badge’. Because, as Barbara Brenner very pragmatically points out, many women who are referred to as survivors at one time, are now dead. She’s had breast cancer twice, and she does not feel she is better or different than the thousands of women who have died of the disease. She’s just luckier so far.


And so, if I am a survivor – does it mean I ‘fought’ harder? Does it mean that those who don’t survive, and that could include me, did not try hard enough? Hard enough to stay alive?

But, what do I say about myself? Well, when I have to, I’ll say I’m a ‘breast cancer patient’ – which technically I still am. I think the 16 hospital and doctor appointments I had in 2010 (a good year in appointment numbers) and being on prescribed drugs does still qualify me as a patient. But what’s the word for – my life is changed forever? My partner’s life is changed forever? By breast cancer. There isn’t a single word to describe any of that.

Survivor, to me, sounds too triumphal, too final, like it’s finished – all over. But breast cancer is not like that – as I am finding – now approaching four years from diagnosis. Katie on her Uneasy Pink blog has recently talked about using the ‘s’ word, simply because she couldn’t find a better way to describe herself. Survivor? Warrior? Victim?

Gayle Sulik, author of Pink Ribbon Blues, writes, “The exclusivity of the term survivor focuses attention squarely upon those who are living, essentially erasing those who are dying from the disease.” Exactly. And that’s part of the problem, our seemingly stubborn refusal to talk about breast cancer as a disease that kills. And so it’s just a condition we treat and nothing needs to change, in terms of preventing the disease happening in the first place.

And, although I started writing here about what to call myself, I have slipped seamlessly onto my current favourite subject – cancer prevention.

So, what’s the word? Well, for me, at the moment it’s cancer ‘campaigner’. It’s someone who’s living with the ‘experience’ of cancer. But it’s not ‘survivor’. I haven’t survived. Not yet.