ON DECISION MAKING
“Audre Lorde had written a very positive book about mastectomy. I just thought right, that’s what I want. But there was no talking about it, no discussion…Nothing, no conversation with anybody – no discussion about any alternatives, no opportunity for any alternatives. So three hours later I was down in surgery having a mastectomy. It was really quite shocking.” JS 1991
“I really didn’t want a reconstruction. It was a very personal decision. No point in not being who I was. I was a one-breasted woman. AD 2004 and 2016
They just shut me in a room with these quite unhelpful, quite medically oriented leaflets…It’s like you have to make this decision alone, as if that’’s empowering. But making a decision in the absence of knowledge isn’t always empowering and it would have helped if I’d had some advice.” JJ 2009
“I never felt defined by my breasts.” JJ 2009
“I don’t see myself as more or less of a woman because of how I look.” AD 2004 and 2016
Account of a mastectomy – without anaesthesia – performed on Ailie by James Syme, surgeon, Edinburgh 1821
Ailie sat down, undid her open gown and her lawn handkerchief round her neck and without a word showed me her right breast. I looked at and examined it carefully. What could I say? There it was, hard as stone, a centre of horrid pain. I got her away to bed. The surgeon, examined Ailie.
There was no doubt it must kill her soon. It could be removed. It might never return. It could give her speedy relief. She should have it done. She curtsied, looked at James and said, “When? ” “Tomorrow”, said the kind surgeon, a man of few words. She and James and Rab and I retired. I noticed that he and she spoke little, but seemed to anticipate everything in each other.
The following day at noon the students came in hurrying up the great stair. At the first landing place on the small well known blackboard was a piece of paper fastened by waifers and many remains of old waifers beside it. On the paper were the words, “An operation today, J.B. Clerk .
“The operating theatre is crowded. Much talk and fun and all the cordiality and stir of youth. The surgeon with his staff of assistants is there. In comes Ailie. One look at her quiets and abates the eager students. That beautiful old woman is too much for them. They sit down and are dumb and gaze at her. She walks in quickly but without haste; dressed in her mutch and her neckerchief, her white dimity short gown, her black bombazine petticoat showing her white worsted stockings and her carpet shoes.
Ailie stepped up on a seat and laid herself down on the table as her friend the surgeon told her. Arranged herself…shut her eyes, rested herself on me and she took my hand. The operation was at once begun. It was necessarily slow and chloroform was then unknown. The surgeon did his work. The pale face showed its pain and was still and silent.
It is over; she is dressed, she steps gently and decently down from the table … and then turning to the surgeons and the students, she curtsies and in a low clear voice begs their pardon if she behaves ill.
She howled abuse
at the relentless
sea roaring challenges
to her stinging skin.
She hurled her grief
at the fruitless foam
on ancient rocks,
in wanton caves.
Shamelessly she shouted
down her curses
to a universe of echoes
deep noise of nothing.
Her tears spun,
salt lingered in the hollows
Of her sucking lips.
Then she turned.
She faced the street lights
of a northern town,
to its embracing fogs.
The following is an abridged version of a letter written by a patient (AH) to her consultant on her decision to cease having chemotherapy after breast cancer surgery.
I have written the following to get my own thoughts straight, to be able to explain things in writing to health professionals looking after me and to have as a record for the future for myself and my family.
My Reasons for Having and then Not Having Chemotherapy
Why I first chose to have chemotherapy
The most important thing in my life is my family.
I especially want to be there for my children when they are adults and grow old with my husband, for their sakes and mine…
The stats say having chemo gives me a 3% increased chance of surviving this cancer for 10 years. If I did not have the chemo and then became terminally ill I thought I would feel very guilty about not having chemo.
I knew chemo would have side effects such as sickness, headaches, hairloss and reduced immunity from infections. I thought I would be able to cope with these…
I think I am risk averse by nature so what seemed a ‘belt and braces’ approach suited me.
It was not a simple decision and had to be made quickly and in a rush but based on what I understood at the time I thought chemo would be the best option.
Why I no Longer want to have chemotherapy
I have now come to a certain decision that I need to stop the chemo for a large number of reasons.
The vomiting side effects were much worse than expected…
I know the drugs can be adjusted but it was a massive wakeup call and revelation to me about chemotherapy…
I thought it would be the best thing for my family if I do everything to increase my survival chances but… it is hurting all of them to see me being ill like this.
I have thought more about the statistics and now view them in a very different way…
I see how quality of life is more important than length of life.
Effects on my family: It has been very gruelling for my husband seeing me so ill. My children are finding it hard…
My parents are in their eighties; my mother is caring for my father who is becoming frail …They are both upset with the fact I am having chemo and don’t understand why I am having such harsh treatment for something that probably isn’t even there.
I feel by stopping chemo early we will have a better chance of getting back to normality sooner…
If I was single or without young/teen children I definitely would not have had the chemo. I thought it was best for us as a family…Once I made the decision, which was rushed, I thought being strong and fixed in that decision was the best way to deal with it all. I should have discussed it more with family… and been more open to their views and opinions rather than ‘battling on’.
I don’t want to feel guilt about stopping, or weakness, or lack of courage. So many people talk about fighting cancer and about how brave people are…I think I have been trying to be superwoman or some kind of soldier or hero and I am not going to do that any more. My experience over the last few days is that I am damaging myself and those around me by having chemo and it is not the best option for me or my family.
AH Monday 30 November 2015
I think personhood and womanhood, they’re the same. I don’t think they can be separated out. But, womanhood changes so much. Through aging, through interpretation. And I am a person, whatever anybody else’s interpretation might be, their idea of womanhood. For me womanhood is full of integrity and strength and so is personhood. But womanhood can be stolen if you’re not careful – by your industries and your sentimentalities….and so womanhood and personhood have to look after each other I think…I was never defined by my cancer so my breast cancer hasn’t changed me… the way I see myself or my womanhood….(after mastectomy)
We sit cocooned
In minute moments
Fragments of chat
Keep us light
With the pink and pastels on the walls.
But we are cold meat
For your imprecise science.
We wait to cook
In a place
Hidden from these watchful words.
I lie unbreasted,
Red above my bones
With your silent blitzing breath.
We go alone
Into your whitened nuclear chamber
Partake in awe
Of your Smart Arts
To the watching, knitting queue.
Jean S. Amended 14th Feb. 2013
“One of my coping mechanisms is not to over-read around it…I trusted the doctors a lot. I didn’t go straight to the internet.” JF 2005
“Chemo was terrible. Absolutely terrible. After four treatments I decided I wasn’t going to continue because if I did I’d be dead. I felt like I was being poisoned, there’s no other way to describe it.” JS 1991
“I was delayed because my blood count went so low…a pretty hard thing to go through. I found the hard thing for me was those blooming steroids they give you … I felt twitchy, really horrible.” JF 2005
“Before you have the chemo you don’t look like a cancer victim. You look perfectly healthy, you know, I never looked like I was ill or anything like that. It’s the endurance of the chemo that is the worst part of it.” CC 2005 and 2007
“I had 22 days of radiotherapy. It all became a blur. I knitted a black cardigan in the waiting room – I’ve still got it.” JS 1991
“When my hair started falling out…I got my husband to shave my head. It felt so liberating. When it first started growing back there was a lot of white in it. I’d read somewhere that you have ‘chemo-white’ before the colour kicks in. Now I have ‘chemo-curls’ which I really like. I’m not used to short hair.” AH 2015
“ I did the belt and braces thing and had cold-cap. That’s hard and I understand why some women say they can’t hack it.” AD 2004 and 2016
“I had the cold cap, which is…God well, I had it again – I had chemo twice – but I didn’t do the cold cap the second time. It was just so horrible. Like having an ice cold riding hat on your head…its horrific!” CC 2005 and 2007
“With chemo you do get very weak – its so hard to concentrate.” AD 2004 and 2016
“The most upsetting thing – more than the surgery. It was horrible, I felt dreadful. I did feel like I was being poisoned… All the physical stuff paled into insignificance against the fact that my brain was addled!” JJ 2009
“Chemo was fine – I had a lot of support – staff, family and friends and a support group. I was learning a lot as I went along. A lot about me and a lot about other people…about accepting help and about asking for it.” AD 2004 and 2016
“I had no features. I would look in the mirror and I was pale. I was like a ghost of what I’d been… I wasn’t in the world.. the other world Is more real and less real at the same time. I felt so far out…in the world of the sick…struggling to survive.” JJ 2009
“I suddenly started wearing hats!” AH 2015
“It’s an odd feeling to see your body [after a mastectomy. You think before you have the surgery that it’s just going to be like that ironing board thing – but its not. I always went into it knowing that I wanted to have a reconstruction so I could never imagine myself being like that forever.” CC 2005 and 2007
“I really feel it’s my responsibility to be noticed. But for the best reasons, not to be difficult but someone who wants to know and who wants to be work with the team. Because we are all on my side, we’re all working together towards a good outcome… and so I’ve been very lucky.” AD 2004 and 2016
“I don’t think it should be sentimental but it should be emotional . I can shed tears but I can deal with it. But that’s not a denial of deep feeling.” AD 2004 and 2016
“I’m not worrying about it. I’ve had breast cancer. I was treated for it. Now I’m better and I hope it doesn’t come back. It’s possible it may come back, but it’s also possible that I may get some completely unrelated cancer. Its also possible that I may get run over by a bus!” AH 2015
“It was a big thing for us. Life goes on but we look back on it now and think God, how did we get through that. But you just do I guess. I was lucky, I had fantastic support.” CC 2005 and 2007
“I chose not to live my life being defined by my cancer or being a survivor – I can’t stand all that! I refuse to be a victim to it…I’ve had my moments but I don’t live my life in fear that I have something.” CC 2005 and 2007
“I find that I have these moments where I’m still touching it. Then I retract a bit – so I’m never…it has never really gone away.” JS 1991
You sit with Time
Waiting for Words
Waiting for chemicals, therapy, Hope
In a hidden phrase.
Your blushing wounds
Well hidden with wigs and wool and foam.
You sit with Time.
Tea from a tray.
Magazines. True Stories. Old stories
Offered for donations.
From other faces and dreams and waits.
You sit with Time.
Watching the day
Slide towards noon, figuring Doom
In a doctor’s note.
You seek your life
In lists and forms and filing trays.
Jean S. 18th February 1996
ON MEDIA COVERAGE
“There are all sorts of things about breast cancer which aren’t about cancer but about gender, about femininity, about the image of a woman in the world.” JS 1991
“The fight, the battle, the journey, the survivor, I don’t think it’s helpful.” JJ 2009
“All the [media] pressure is on you to be marvellous and keep it all away from everybody but actually, for me, it was ghastly…The world of the sick is horrible – all those appointments and not being able to get out.” JJ 2009
“Refusal is a powerful weapon against the media.” JJ 2009
“Where is the slot for the older woman? Because it is an older woman’s disease. I don’t think the media are getting it right.” AD 2004 and 2016
“All the discourse was about making you look as much like you were. How could you be like you were before? You’ve had something life changing. How could you be like you were before!” JS 1991
“I’ve never seen cancer as a battle. I feel quite sorry for the people who may relapse, does that mean you’ve lost your battle? Because that’s how it is described in the press…Its just another illness – do you battle diabetes? – its not a different illness from anything else.” JF 2005
“ Categorising cancer patients as victims generally only reinforces the passivity of the diagnosis.” JS 1991
“This little thing gnawing and gnawing and I thought, it’s a lump that! Then an ad came through the letter box about private health insurance and it had an example of breast cancer and one of the pictures looked exactly the same as my lump.” JS 1991
“I was referred by the GP. Not thinking it was going to be anything because of my age. You think of women with breast cancer in their 50’s or 60’s. I don’t fall into that category.” CC 2005 and 2007
“I stood at the sea wall and I screamed and screamed. It was really cathartic.” JS 1991
“The next morning I remember looking in the mirror in the bathroom and thinking, God I’m still here. Someone’s told me I have cancer and I’m still here. I still look the same.” JJ 2009
There was a mixture of emotions when I was first diagnosed. Obviously really upsetting and then you have to tell people. There were lots of flowers and call which was lovely, but then every time you get flowers it makes you upset all over again.” CC 2005 and 2007
“She said, “there’s a tiny bit of cancer there but it’s very treatable.”…the phrasing is very, very significant. She didn’t say she would cure it. She didn’t say I would survive or I would die. She just said it was treatable so that phrasing and her whole manner was extremely good and really made a difference.” AH 2015
“I felt a lump on the side of my breast. I was heavily pregnant. I thought it was a blocked milk duct.” CC 2005 and 2007
“I wanted them to ask me why I thought I had breast cancer. I wanted to speak to the medics about why, about what I thought was going on with my body but nobody ever asked me. I wanted to ask about different types of breast cnacer because clearly there are different types, different ways of being treated, different rates of survival but nobody was listening.” JS 1991
“I remember lying in bed thinking, I am screwed, I am screwed. Its come back and I’m going to die. I was lucky to get away with it the first time but this time I’m going to die. Yeah, you have those despairing moments.” CC 2005 and 2007
“I just sat in the garden and phoned all the people I needed to tell”. JJ 2009
They did say that from the scans they thought that they could save one half of one breast!” JF 2005
“My first response to breast cancer was, my job has made me so busy that I cant respond to my body so I’m going to give up my job. My second response was, why should I give up my job? This is ridiculous! My third response was, what’s important to me in my job and what do I want to do? JS 1991
“The first time I was diagnosed I’d had ticket to take [her daughter] to see Scooby Doo at the Millenium Centre. We still went. You put your ‘game face’ on.” CC 2005 and 2007
“There was a mad panic to finish the Christmas shopping before I went in for the op – its so silly!’ JF 2005
“They did an open biopsy. That was the start of quite a set of experiences! The waiting times between procedures helped me pace myself.” AD 2004 and 2016
“You do have to look at death.” JS 1991
The Song of Wandering Aengus
I WENT out to the hazel wood,
Because a fire was in my head,
And cut and peeled a hazel wand,
And hooked a berry to a thread;
And when white moths were on the wing,
And moth-like stars were flickering out,
I dropped the berry in a stream
And caught a little silver trout.
When I had laid it on the floor
I went to blow the fire a-flame,
But something rustled on the floor,
And someone called me by my name:
It had become a glimmering girl
With apple blossom in her hair
Who called me by my name and ran
And faded through the brightening air.
Though I am old with wandering
Through hollow lands and hilly lands,
I will find out where she has gone,
And kiss her lips and take her hands;
And walk among long dappled grass,
And pluck till time and times are done,
The silver apples of the moon,
The golden apples of the sun.
W.B. Yeats (1865–1939). The Wind Among the Reeds. 1899.