Journal (Clare Best, June 2006 – December 2007)

 

27 June 06

This story began so long ago. But I’m writing the week by week of it from where I find myself now, summer 2006, contemplating having my breasts removed. Elective surgery. Still an op little known here in the UK… at Guys Hospital they do the operation on 4 or 5 women each year apparently, not more, though the frequency is increasing. Most of those who decide on elective surgery are known to carry the BRCA 1 or 2 genes that gives the bearer up to an 85% chance of developing breast cancer.

There are only four women in my immediate family: my mother, her sister, my first cousin and me. Three of us have so far developed breast cancer. They have tested my mother’s DNA and my aunt’s, mine and my cousin’s for BRCA 1 and 2 and have not found alterations in the genes yet. Beyond that we don’t know. They keep testing, as the tests continue to be developed, and are more and more sensitive. My breast specialist tells me that the genetics experts have now isolated other genes implicated in breast cancer, and perhaps our family cancer is one of these. But they cannot test for them yet. So I’m left with the close monitoring option or the elective surgery option.

It seems a rum decision to be trying to make. Whether or not to carry on playing Russian Roulette and risk developing breast cancer and then have breasts removed, or to go ahead soon now and have elective mastectomies as a healthy woman, largely preventing the likelihood of getting the cancer. And then if I carry on monitoring, I suppose one of these days the experts may tell me I can’t have any more mammograms – some say they are not such a great idea, as too many can increase the risk of developing breast cancer.

 

I had my 6-monthly check-up last Thursday. The usual pattern: clinical exam and chat, then ultrasound, then follow-up chat. In June it’s this combination, and in December I have a mammogram too. The ultrasound helps them build up a good picture of my especially dense breast tissue, which is anyway prone to developing cysts. Each new set of scan results can be compared with the past mammograms and scans, and my breast anatomy profiles examined for changes year on year. There are dozens of images of my breasts now, after about 20 years of monitoring. All more or less healthy so far. Without the ultrasound imaging I would already have had to have many needle biopsies to check out the lumps. So far these have all been benign cysts.

The difference seeing the specialist this time was that I knew I wanted to open up the subject of elective surgery. It was the first time I’ve been able to confront it. The last few years I’ve observed my own anxiety levels increase gradually towards the 6-monthly check, then the immense relief of the ‘clean bill of health’ then the tucking away the whole subject for 5 months, followed by the final weeks of climbing up the anxiety scale again. Repeat, repeat, repeat. The false, so false ‘safe’ feeling after a check-up when things go well and I think ‘I’m fine for another 6 months’, is like being given time back, or a bonus. But in reality it’s not like that. In reality I could develop a tumour at any moment in that 6-month cycle. Cancer is a lottery.

So after my last appointment in December, I determined to talk to my cousin about elective surgery. Then to raise it with the medics. She even discussed it with her oncologist to get the ball rolling, and she reported back to me a few weeks ago. Now I’ve talked to my gynaecologist and to the breast specialist and I’m in a new stage of the process. I’m on my way to making a decision. Or decisions really, there are several to be made. Several kinds. One’s intuitive. Another’s practical. Another’s reasoned. Yet another’s emotional.

 

Feeling a bit sick. Spoke to my cousin again this evening, before she goes back to France tomorrow. I told her about the talk with my specialist. She says if it were her she’d definitely have the surgery. We agree the decision/s need to be considered and I must take my own good time. We agree to talk again soon or email when we’ve both had time to think more. I am, as ever, so grateful for her input, her view from the other side of the fence – with entrenched breast cancer – her so well-informed view, her kind, experienced, loving and pragmatic honesty.

Little by little. This will take me a while. I’m trying to get to grips with what my breasts mean to me and why the thought of parting with them is so difficult. I need to support myself carefully through these deliberations, inform myself and meet my own and others’ fears and anxieties head-on. No-one else can do that, and when I mention possible elective surgery people’s reactions are so strong and opinionated, so full of horror and fear. So typical of taboo and of stigma. So understandable. But very unhelpful to me.

 

28 June 06

Clear air, bright sun, a light sea breeze. The 5th anniversary of losing Jack, my second son, in utero. I remember the terrible pain of having breasts that still felt heavy, pregnant, for weeks after the baby had gone.

This morning I woke wondering about how fundamental breasts are to femininity. How empowering in some ways to have them, but how empowering potentially to remove them before they threaten me. And I was thinking how my cousin said she would have the surgery for sure, but maybe she’d try and have a plastic surgeon work alongside the breast surgeon so the result could be as neat as possible, even without reconstruction. Neat scars would surely help with body image and self comfort afterwards, wouldn’t they?

I’ve begun to notice other women’s breasts a lot more! I look at the shape and size, I even find myself assessing their bras and underpinnings, or the lack of them. I wanted to wear a T-shirt without a bra this morning, but was not sure mine are ‘pert’ enough (my specialist’s word!) to merit this. I lacked confidence, but then I have often lacked confidence particularly where my female body is concerned. Yet all of a sudden I feel like I want to give my boobs a really good innings these warm months, maybe my last summer with breasts. I want to celebrate them.

 

30 June 06

Trying to talk to P [my husband] about breasts is like standing outside a shop that says ‘Closed’ on the door and attempting to raise a response. He is not at home on this subject. We keep saying we must talk about it and then not talking about it. ‘Let’s talk about it later.’ Yes. And then of course, his own sister died of a very aggressive breast cancer in her mid-30s, before I even knew him.

All this is painful in itself because there has never been anything in our long relationship we couldn’t talk about before.

Tonight whilst we were making dinner he said he thought there was a risk of getting swept along by other people’s views on it. When I asked him whose views he said my cousin’s and the medics we have, and isn’t there someone else with more up-to-date or different medical input, viz USA. He would like to hear about an alternative. But I think that the Americans probably do more preventive mastectomies than we do in the UK.

I think his questions are all part of a sense of the myth of a woman not being a woman without breasts. But of course he says his concerns are for me. They are. But he doesn’t realise that his concerns for me are also about wondering if I will know who I am without breasts. And now, because it’s possibly life or death, or at least bad life or early death, I will make my own decision about this. About things that no-one can describe except those who have seen women suffer breast cancer like I have and who face the thing, the Russian Roulette thing, themselves.

 

7 July 06

Anniversary of London tube and bus bombings. 2 mins silence at 12. I forgot and felt terribly guilty. I was having lunch with E. Catching up on this hopelessly overfull week. OU marking, worries, calls from everyone. I am tired beyond tired.

 

And now it’s nearly a week since finally P and I did talk more openly about breasts (Sunday morning in bed, early) and what it all means and how he admitted that he selfishly felt that reconstruction would be best. And how I explained why I wouldn’t do that. Why? See a whole chapter…

This week has been a whole chapter of its own. I’m moving into another place with the decisions. I have made an appointment to see the specialist/surgeon again on the 25^th July, Tuesday, at 7pm. I am closer than ever logically and intellectually to making the decision, but keep moving farther and farther away emotionally. Will this continue? Meanwhile I see writing this journal as my link to sanity. I can sit and weep and not feel stupid, I can regret the bloody genes, I can say that every bad joke and every good joke and every story I hear at the moment is about breasts. Just like after I lost Jack I kept seeing pregnant women. Everywhere, in dreams and nightmares, in supermarkets and school playgrounds. Now it’s breasts! Only I still have them, and can choose to keep them.

I keep wishing I hadn’t mentioned the possibility of the op to people I’ve mentioned it to: living with their unease is painful. N hasn’t mentioned it to me since I told her and I wonder if M will ever broach it again. For women it’s taboo. For men it’s taboo. For women it’s about threatening their own safety, for men it’s about threatening your own female identity in their eyes, almost tantamount to gender suicide. Then perhaps you threaten their boundaries too… if you’re a woman without breasts, are you almost a man, crossed into their camp? Do they fear this?

 

And all the while I feel weepy and tired and want to stop. I feel lonely, unbearably knowing. I literally know too much.

 

Thursday 20 July 06

Nearly two weeks since I wrote here and I begin to know why the delay. So many many issues, about telling people (I’m needing to forewarn people that I may not be available much in Oct/Nov) about not telling people (secrets, I can keep them well, I’m good at secrets…), about reading books on breasts, about F [my son]’s birthday joke gift of two 36 DD water-filled balloons to fit in an old nursing bra, about realising that if I have mastectomies I’ll be having them because my breasts are NOT diseased, about a conversation with [my youngest brother] in which he appeared to suggest that having my breasts amputated was simple – ‘so they remove the tissue and replace it with something else’. About all my experiences of life and writing coming together in this journey to breastlessness, about coping with other people’s reactions… about seeing the specialist again with P in a few days time, about P’s thoughts, about fragmentation of the body and how that works in my psyche, about my dear [friend] E and her reactions, her ways of wanting to care for me and look after me, about my response to that.

About clearing the space to think through these things and to write. To move into the space I create for myself. To fully occupy my own space in this life. To become myself with all that means, and maybe I can do that still without some things I think of as part of me.

I am lonely, my breasts are lonely. They may have limited time. I am aware that no-one is any good to talk to on these evenings; I am on my own with this strange dilemma. No other woman wants to know, why should they? And I’m not going to be talking to any man other than P about this, why would that help? So who to talk to who could possibly have perspective and more wisdom than I have myself on this subject?

 

Friday 21 July 06

I’m rejoicing in going bra-less in this very very hot weather. 32 degrees yesterday and most of this week. My boobs aren’t even too southerly for my age, or else age is deluding me into thinking they’re still quite ‘pert,’ to use that phrase, again!

If I go ahead with surgery, am I going to have myself painted in the nude, or photographed, or both, before the surgery? Gifts to myself and to my family… me before, physically whole? Or does that somehow underline the supposed imperfection of the me ‘afterwards’?

 

Wednesday 26 July 06

Hottest day yet, though we keep saying this. London day yesterday quite enormously hot and the tubes almost insufferable, probably 120 F on the Central Line and Northern Line.

Met P at London Bridge, in WH Smith, 6pm. Felt very tense and too hot to chat over a drink at Hay’s Galleria. The appointment with specialist/surgeon was at 7pm. At these moments, on these days, I notice breasts more than ever, am quite delighted by the variety of them, it gives me hope that having none at all may not seem so extreme, just another variation!

There seemed to be no other patients at the breast clinic, maybe I was the last. The surgeon came across as tired at first, I may have been feeling hypersensitive but gained the impression on going in to his rooms that he was wishing he didn’t have to see not only me but my other half. But he loosened up a bit. We sat, P and I one side of his table, him the other, discussing breasts and risks, and cancer, and reconstruction or not, and all the other questions and queries, for an hour.

About other preventive measures: the ductal microcamera is not yet advanced enough to be a help in cases like mine, the genetic picture is still foggy, Tamoxifen only reduces the risk of breast cancer by 40% and can have unpleasant side effects, counselling is a pretty good waste of time, and he’s against sending me to a psychiatrist as he thinks the extra opinion can be unhelpful. He thinks it best for me to talk to the breast care nurse about prostheses, to look at his ‘photo album’ and to just carry on with my decision making processes on my own. Well, I prefer honesty. The op without recon would mean about 5 days in hospital, 4 weeks convalescence, at least 2-3 weeks not driving.

 

Throughout the consultation I was aware of a greater promotion of recon than during my previous appointment. In fact he didn’t outline many of the downsides of recon to P, maybe he thought I’d be won round by two men feeling positive about the more ‘acceptable’ surgery. It’s the oddest feeling… breasts so culturally important and such symbols of sexuality, men really can’t easily cope with thoughts of NOT wanting false boobs. As I said to P, why would I want false ones with all the inherent problems, I wouldn’t be able to feel anything in them anyway! Better to have an honest flat chest.

But the surgeon did serve our sense of this decision being one that’s very very difficult to make, and can only be made by me. Of course. But I think from his reaction to my million-dollar question, ‘What would you advise your own wife to do in my circumstances?’ that he would encourage her to have the op. ‘I would be gently supportive of her steps along the path to this surgery.’

There was a problem for me being in the room with TWO men discussing my breasts. I felt the old feeling I used to get when being talked about or to as a child. Even with all the care in the world, that is odd. I think it was about the way each of them withdrew into formality, into dryness. If we were talking wombs it wouldn’t be like this… would it? Is that because wombs are invisible, while breasts are SO visibly the accounts of sexuality, mothering, food, nourishment, comfort.

The surgeon thinks I’m well prepared to make the decision, and I can see that what he says is going to help me decide intellectually but will never help me emotionally.

But I do feel a bit closer to the decisions. And P now knows more. I think he would still prefer recon and I need for my own peace of mind to explore these thoughts with him. This is a so male preoccupation with recon.

We travel home on one very hot train from London Bridge to East Croydon and then a wonderfully cool one all the way from E Croydon home, through humid air and flashing railway lights, like an electrical storm in the half dark. I have never been so glad of a cold shower.

 

Sunday 30 July 06

About to leave for Italy on Tuesday, Lake Maggiore, and a good rest. I kept in my feelings of aftershock following the appointment with the surgeon and P, knowing I would deal with this in my own time, not wanting to touch those sore places before I felt ready to.

The feelings finally got to me on Friday morning. A lot of tears, a lot of telling myself about the worst of fears for me which is, at the moment, the fact that I can’t see how I’ll ever come to a decision, and yet the importance of working through exactly these fears, here and in my head. I have to marshal as many facts as I can, inform my decision and then stand right back, reject all reason and logical thought and let the decision come through. I’m still a long way from that, still gathering stuff in and talking to myself rationally, still reading and googling, being sensible. In the end, I’ve decided, the subject matter of this decision has to become so small for me that I make the decision literally without thought. It has to become minuscule or it will be too big to take and certainly too big to live with, but it has to be large first and then shrink. This is how my process must take me forward.

One thing I have been honest with myself about is the need to explore all the physical implications for P and how my situation resonates with his buried sense of losing his sister to breast cancer. Separate but parallel to my own journey with my mother, my aunt, my cousin. My own sense of identity and body image can only be secure ultimately if he feels he has come to some accommodation of his own relationship with breasts and breast cancer. This is another team effort!

 

I have found the Breast Cancer Care website helpful with further info on genetics and breast cancer and notes about other relevant organisations and a chat room for women who have family histories. Many of these women are facing the same set of decisions as I am; only many are younger and have not even had children yet. One woman in her twenties is debating whether to have her breasts removed before she has a baby. Agony. I think she has watched her grandmother, mother and sisters develop breast cancer and die. I feel very very lucky.

 

Thursday 7 September 06

Over 5 weeks since I wrote here. The internal processes have been working away. Yet externally I feel not much further on. I loved my body over the summer, indulged it and felt fit! In Italy I dressed up a lot. I revelled in all the sensuousness. Now it is autumn, nearly, and will soon be time to cover up.

As I move into the end part of the year I’m bursting with creative energy and the need to apply some of it to this decision. At so many times over summer I’ve felt overwhelmed and repelled by the idea of mastectomies, now I just feel there is some individual space for me to think about it and by building in thinking and writing time on all this I will move through the decision and will find myself on the other side of it. Of this I am confident.

Now massages and body writing ahead… I am aware of having to hold open my space for me, for creativity, for thought, sometimes I become cramped in by other’s needs and P’s and so many other things to be done. But this autumn is for me and my making, and part of my making is to find out how I’ll use this space, how I’ll hold it open and what I’ll put into it. My body. My skin to feel. My integration to do. My responsibility to take.

On the practical front I am lined up to see the breast care nurse at Guys/London Bridge. I will try and contact a counsellor too, for some counselling. I have finished reading the Marilyn Yalom book and have more thoughtful research to do on meanings of all this breast stuff, culturally, and then there are the websites.

[My friend] C is against the idea of this surgery, says my breasts are too young and lovely to go, P and I are young, but I may talk with her. There’s a friend of a friend in the US who had elective mastectomies and another who knows she has to address all this as she has it strongly in her family. They’re all coming forward.

And then there are all the people who have a view… my father (on his last visit here a few weeks ago) and soon CR, whose opinion I’ll truly value. And there are all the people I’d never mention it to and to whom I would then wonder how to explain a sudden and shocking flat chest.

But here on the page it feels safe to be able to inhabit this space. Unpack, like I did when I arrived at the hotel on Lake Maggiore.

 

Friday 8 September 06

Yesterday the first massage and writing sessions with E, we guide one another through inventing and using what I can sense will be an interesting therapeutic and artistic tool. Feels like breaking frontiers. Exploration. Something that could even be used clinically for other women preparing for big ops, provided there was time to go through it gently.

I am writing it up separately but it is beginning already to help me feel that the emotional and intellectual sides will be integrated and the decision will emerge. E feels this child beneath my skin, as I have known her all these years. She (the child) and I have to agree on the decision.

 

Tuesday 19 September 06

Movement on decisions. Something settled out or in after the second massage session, at the end of last week, something about anger and defiance fitting into their places, something integrating between different levels of my personality. Communication between layers of me.

Meanwhile this is the week of the appointment with the breast care nurse at London Bridge Hosp, Thursday, and I am starting to focus on the questions, the issues. Part of me shies away from this and I want the massage session today to focus my feelings on it as well as my thoughts. Then I think I’ll feel ready to begin writing what my breasts mean to me. What would be lost with them.

Coming back from Lincs on Sun night after a working weekend at Woodlands, I met S at the station – she was returning after giving a paper at a conference in Oxford. She told me she had heard about the op from a mutual friend. She was very kind and concerned.

 

I am thinking a little these days about how I’d wear clothes without breasts. A new wardrobe? The latest edition of Vogue is riveting. So many models with hardly any discernible boobs, fashions retro towards the 1920s, layers and cover-ups of breast zone, and cuts that dis-enhance the breast line. Timely!

I am thinking too about all the women who have to take this decision (or who never take it but wake up without breasts after explorative surgery) without any time at all to adjust. I think about my mother and her few days of panic and pain before her first mastectomy. About her shame and the taboo it was back in the 70s, and what that must have done to her. And of course I think about my cousin, always there in the background, sometimes the foreground, living with cancer, without breasts.

 

Wednesday 20 September 06

I have half an hour to write this morning, then I must get on with marking and will be watching F in a football match and later all the other domestic things. And yet tomorrow I go to London to discuss the breast issue and somehow have to carve out time today to adjust to the idea of the meeting with the breast care nurse, and the questions and answers and the trepidation and the sense of going onwards. I know now, I definitely know, that logically and intelligently I should go ahead with this op. This knowledge has been rising in me for the past week or two and I have been quite happy to tell myself that this doesn’t matter, that it’s the other part of the decision that matters, but of course now that this side of me is OK to go forward, it puts pressure on the other parts. Subtle pressure. I can hear the internal dialogue going on… ‘You know it makes sense, look at the risks you’d be eliminating, look how the timing is optimum’ etc etc. But the child in me has not joined in yet. I want her to engage.

And the breast memories… of my mother… I think back to the time in March 1972 when I was collected from school one day by my father. ‘Where’s mummy?’ I asked, smelling a rat straightaway. It was always my mother who collected me. ‘She’s in hospital, she’s had a small operation. She’s fine. Don’t worry.’ I didn’t dare ask more. My father had a way of closing a conversation that was as final as the lid of a box being nailed down.

After a week of intense anxiety and not sleeping at school, I asked to see her. I’d heard whispered conversations behind study doors when my father came and went from my boarding house mistress’s rooms, and I’d guessed that whatever was wrong with my mother was either unmentionably embarrassing to my father or unmentionably grave, or both. My request to see her was carefully considered and I was granted an audience a few days before she was due to come out of hospital.

My father walked in front of me to the end of a long grey corridor in the long grey hospital. Hers was the last room on the left. He told me to wait outside, which I did, while he knocked and entered. Hours seemed to pass. Eventually he came out to fetch me. He took my hand and, squeezing it until it hurt, he led me in. I didn’t see my mother at first. The room was filled with white – white sheets, white walls, white plastic-covered chair, white Formica bedside table – so much white that I could only squint into the brightness. The sun was shafting into the room from a small window on the wall opposite the door, and I was almost blinded. And it was hot. But she was there sure enough, a white figure in the bed in front of me. She lay propped up against a bank of pillows, her face a warm pink tone, her hair scraped back from her forehead, uncharacteristically severe.

I scanned her and the bed and surroundings for any clue as to what might be wrong with her. The clues had been carefully hidden. She wore a rosebud sprig nightdress, a few inches of which were just visible at the neck, but the sheet had been pulled high over her abdomen and chest and even across her right shoulder and arm. Beneath the absurd toga, she was motionless. I went towards the bed and lent over to kiss her, being careful not to let any part of me touch the white sheet or what lay under it. The cheek was warm and velvety. Tears came. Hers and mine. Now that I was so close to her face I could see that something was sad and different about her. Very very different.

 

Friday 22 September 06

Yesterday was my visit, with E, to meet the breast care nurse, and talk through aspects of breast care and surgery and look at prostheses and pictures of reconstructive surgery.

Today it is raining hard and I am here in my office at the top of the house wishing myself not distracted by phone calls. All I feel is the need to lie down and try to reconcile what I saw and heard yesterday with how I feel and in particular how I feel about going forward.

Well by last evening and this morning I realised my intellect has made its decision, to go ahead with surgery, but my emotional/limbic brain still has not… and I refuse to let the intellect bully the emotions and body. Perhaps my message left with the counsellor will bear fruit and talking with her will help. I am believing in the chance of timing and that all these connections will end up feeding into a final ‘whole’ decision. For the present I am stunned. I need to breathe.

 

The room where I met the breast care nurse yesterday was full of prostheses and posters for wigs and a glass cabinet of headwear for post chemotherapy. Pink turbans and blue and white checked gingham turbans and hats, weird hats. And racks and stands with stacks of leaflets informing about every kind of cancer and its therapy. That’s where we sat together. We had to walk through the chemo day centre to get there. Chairs with people attached to tubes dripping poison into their blood, to cure them. One thing only I can be sure of, I would do a lot to avoid being in that room, sitting in one of those chairs. I would have my breasts removed to avoid it.

We churned around issues of keeping nipples or not, numb or not, and what began as my clearly voiced need to discuss ‘no reconstruction’ ended with the nurse showing pictures of reconstructions (there are no pics of simple plain double mastectomy scars) and her saying ‘Now yours would look like this, as good as this, this is how great your result will be’. Unsubtle. Felt like an attempt at brainwashing. What is beautiful and what is not, what constitutes femininity and what does not. What is acceptable, what is not. What is woman, what is not.

I decided once and for all, in this room, that reconstruction is not for me. E and I took a quick break for lunch (sandwich and large glass of sauvignon) at Ball Bros in Hay’s Galleria. Needed the wine, as round two was the colour pics. The black-and-whites had been presented first. The colour pics were kept for the main course.

Album. Colour pics of women without heads, without legs, just torsos and scars. None I really wanted to identify with, either in pre- or post-operative state. The pics just made me feel really different.

And of course the whole thing about nipples is weird and so important. I keep surprising myself about this nipple thing. E has some leads for talking to people who know about mastectomy in the context of gender reassignment; where breasts need to look good, ie have nipples. Tattoos are also an option, and various kinds of ‘false’ nipples. Breasts without nipples are like heads without faces? More research to be done here.

E has this morning made contact with the masseuse at London Bridge who has much useful info re massage and homeopathy pre and post op. Great stuff.

I need to follow up the genetic counselling team in order to go down the prescribed counselling route and cover stuff do to with body image, identity, etc, with the ‘experts’ in the field.

I probably need to talk direct to their plastic surgeon at London Bridge, about nipple retention.

I need to talk to the counsellor if I can.

Today though I am numb, as though some operation has been performed on my feelings and sensibilities. Some of this is a reaction to the lies that women are sold about what constitutes a ‘better option’, the whole male construct of womanhood that almost all women also buy into. How should those scarred and pained bodies necessarily be more whole or healed than a flat chest and a psyche that’s come to terms with beauty being an inner quality? So much pain all round, hard to even look at in photos let alone imagine.

I am thankful today just for being whole physically at this point and for the support network I am able to tap into and which I am constructing and extending for myself. The realisation of how much more support women need is terrifying. And time, most women don’t have the luxury of time. I can make the time work for me.

 

Monday 25 September 06

Whole w/e of ups and downs since first reactions to Thursday in London. Woke up Friday feeling intellectual decision made, woke up Saturday feeling physical and emotional sides pulling absolutely against intellect. Looked in mirror and loved my body. This at least is positive! Wondered how I could ever destroy part of my own body though, and so fundamental a part. Struggled with this all Saturday around Oxford in sunshine. Sunday I woke up feeling more balanced and able to talk about whole picture with P and brief him on where I am with it all, or where I feel I am. He is as with me as he can be.

Today F’s needs have taken over and I am fixing him to see new allergy specialist in London next week. My thoughts and feelings around surgery for me need to take the back seat in the bus.

I have a list of action points though and a trip to Foyles planned to look at books on surgery etc.

Suddenly November 20th is less than two months away and I feel a little sick at the thought of ‘If I go ahead I won’t have any breasts two months from now’.

 

Tuesday 3 October 06

Brightest day in weeks, after a lot of dark and rain.

C came last Wednesday and brought news of [our friend]’s mastectomy a couple of weeks ago now. My determination for prevention redoubled. Very good talks with C around what my or P’s reactions would be in various different circumstances eg if I decided not to have op and found lump in 6 months or 2 years, if something happened to me under anaesthetic, if I had op and then got cancer of toe 2 weeks later, etc etc. Nothing we discussed seemed to make sense except doing what I can do to prevent cancer. She talked of [our friend] having full op for the sake of those who love her. This is what I feel too. F and P need me, lots of others too.

What C did for me was to be a very special and vital kind of sounding board, as she knows me in a particular set of ways. I am so very grateful to her. It helped me realise I had made the decision already and had only to form it in my head. For the rest of me… the head decision is the head of the baby born, and the body of the baby is the emotional and physical decision… and that follows now. I am already adapting my internal picture of myself – in this new image I have no breasts. I am getting ready. I am an Amazon warrior woman and flat-chested and not afraid of it or of not being lovely and beautiful. I will be. I’ll be a sexy flat-chested woman!

Energy returned with a bang the day after C was here and now I have begun to tell people the decision is made and I feel a lot lighter and clearer and easier, the decision itself was hell. Now I can prepare in earnest… medical details, dates, books, domestic arrangements, everything else that I know I must do for me and for P and F to ease the way through Nov/Dec. There is almost a countdown coming into play. I’m anxious to keep healthy and will have flu and pneumonia jabs too, as well as vitamins and all the rest. And homeopathy and massage. There’s a lot to do if I am to do it properly. I’ll be needing my down time for me and must guard it. Must also make sure E does not get overtired again and again and help her keep her strength. It is all a lot to undertake. With cancer you’re just thrown into it, this way is premeditated and needs the right set of preparations. I have just made an appointment to see the surgeon to set details in place, seeing him Tues 24 Oct with P.

 

Friday 20 October 06

Where have these more than two weeks gone? Mostly in a maze of arrangements. We’ve both lacked sleep and been edgy. So much to think of. My adaptation is following its own course.

Ordered and watched the Spadola and Powers ‘Breast Documentary’ and was glad to find something both honest and funny. It got under my skin!

Still not sure if I’ll be able to keep nipples, have researched a bit and must talk to the surgeon on Tues evening. Suddenly the need to get the op done seems more pressing than nipples, but there may yet be time to find the right plastic surgeon.

In this time I have contacted [my friend] N who is happy to have F for a few nights when I am in hospital. I have contacted the genetic counsellors at Guys and will see them in less than two weeks. I have had some counselling in Lewes and will do at least several sessions exploring my anxieties around the op as well as the background to my decision. Need to ensure that I am doing this for the right reasons and not just to relieve some more generalised ‘free-floating’ anxiety. We spoke of my reactions to loss (past losses) as well, and about how much this decision has to do with wanting to control my situation re cancer and not put F through what I went through in adolescence when my mother had cancer. I feel confident that some sessions with her through the winter will help a lot with the aftermath too.

But mostly in this time I have felt the reality of a major op creeping closer and have revisited and revisited my decision to go ahead.

 

Tuesday 24 October 06

This evening I’ll be seeing the surgeon, with P. I’ll be asking him about nipple-retaining surgery and the options for that (E has just heard of someone who has changed gender and had the bilateral mastectomies done in London, keeping the nipples, she will give me this person’s name and number.) And I guess if all goes OK we’ll set the date formally.

I’m trying to contact a photographer in Brighton to do some pictures, the last of me with breasts. I’ve found a dictaphone for writing after the op. I’m laying in stocks of talking books, again for after the op.

I am borrowing a SAD lamp, seems the right winter to get one.

P is getting much more used to details of the plan and is facing aspects he hasn’t before, but continues to explain that he’s a reactive person and probably will not be able to anticipate too much before the events. He’s also so beleaguered at work that he can hardly cope with anything else until after Nov 10th when he stops until Jan 2nd.

F, who is after all still only ten, seems to understand what will be involved in the surgery and knows that I’ll be needing extra TLC, and when we have a date I’ll be able to tell the school so that pastoral care can be appropriate. Then it’s a question of my finding the best ways of communicating this news of the op to family and friends everywhere, or letting news filter down through specific people in various arenas… family, old friends, school community, writing community, local people etc etc. A mix of email and short phone calls I think. One of the big burdens is having to talk about it all so much. As we move into the month before the op I want to withdraw and be able to prepare myself mentally and physically (lots of swimming and walking) and not have to see/speak to too many people, but preserve my energies so that I go into surgery as fit and calm as possible and not sleep-deprived and anxious.

Talking to a friend who just had mastectomy on Friday evening reassured me about the post-operative pain involved, she swears she’s had very little.

 

I feel myself to be in a new state of calmness and strength and this is the best thing that could possibly be happening. Is it because the plans are becoming clearer? I begin to see beyond November.

 

Saturday 28 October 06

A double-decker bus of a week.

Although we didn’t come away from Tuesday’s appt with the surgeon with a certain date for the op, we have the provisional date of 24 Nov, a Friday. To be confirmed with theatre availability on Monday. The surgeon was more approachable and he was kind. We went around the decision again and around the feelings and emotional side. He can see the sense in my approach and thinks it valid as a strategy. He thinks the genetics people I see on Monday will be supportive too. It feels important to me to have that full medical ‘endorsement’, perhaps because I was brought up to trust medics in white coats and somehow especially surgeons!

Also for the first time he was not trying to sell me reconstruction and has even offered to get me and P pics of no-recon surgery/after surgery. This also felt very important. We talked about nipple-saving surgery and he is going to enquire of his plastic-surgeon friends and colleagues and see if a skin graft could work. It would mean a bit longer in surgery, say 3 hours as opposed to 2 or 2.5 but he is also doubtful about the likelihood of its working well. He has seen many and only about 50% ‘take’ well, the rest die or are unsatisfactory in some way.

And of course we began to talk dates and a bit more about recovery time etc. I don’t want to push things too hard up against Christmas.

Meanwhile I need to have a last screening: mammogram and ultrasound about 2 weeks before the op. Strange how that already begins to make me feel involved in the anxiety cycle again… ‘Will they find something on the scan/mammo? Will that mean I’ve left this preventive surgery too late?’ etc. Helpful in an odd way to feel this anxiety come back, as it reinforces my decision to have the surgery.

 

Now the preparation begins in earnest. The homeopath recommended by Guys Hospital has prescribed her homeopathic remedies:

‘First of all I would suggest you do some good immunity work prior to the surgery.  This would mean loads of green veg, water, sleep and visualisation of a speedy recovery.  Also make sure you’re taking a good multi vit/mineral. The primary remedies to take are Calendula and Arnica. I would start the Calendula about a week before surgery in a 30c potency. It is a general wound healer and immune system support.  Keep taking it for a couple of weeks afterwards. After surgery so long as you aren’t on any blood thinning medication for high blood pressure, you can take Arnica 30c three times a day for a week to help with the trauma to the soft tissue.  This will help with any swelling or bruising. If after a week you still feel sore, keep taking it but drop down to twice a day. Then I would also start Thiosiniminum (thy-oh-sinni-my-num) 9c twice a day to help prevent excessive scar tissue. If you feel at all emotional after the surgery you can use Ignatia 30c to help with grief, shock and trauma.  The Arnica will also help. You can order these directly from Nelsons Pharmacy on 0207 495 2404.  They will post the remedies to you.

I wish you a quick and easy op and recovery.  Please let me know how you do.

Warm regards’

 

I am now spending half an hour a day in front of the SAD lamp (Litebook, very compact and portable model, others all unwieldy) and hope this will help me with energy levels and sleep and mood.

I have identified with the counsellor some of the areas that I still need to work on but we have agreed not to have a regular weekly ‘slot’ but to meet in an ad hoc way when I need the support, both before and after the op. Thursday’s session was mostly working around what I feel to be the main challenges of the op for me, a bit more too about direction and how I feel about the decision now it’s made.

One area of focus involved how to think about the change in body shape and the shaking of foundations that could go alongside that. I was worried about how P would cope. The counsellor said that in her experience the thing is really between ‘you and you’ as she put it, between the me that has been and the me that will be after the op. Beginning to internalise and accept the changes (part of the work I’m doing now) will help so much with the work afterwards, and the more confident and OK I am with my new shape, the more so P will be, and of course F too. My comfort must first exist and must then shine through for others to see.

 

Monday 30 October 06

Day before Halloween.

What is going on with the plan for op? Today tried to fix date for 24 Nov and not heard back yet from the surgeon’s secretary. Then went to London to Guys for appt with Genetic Counsellor on 7th floor and there is bemusement with me tonight for all the confusion… the surgeon had said there was nothing more to be added on the genetic front, now I gather they can test for the other 25% of BRCA genes for which our material has taken many years to be tested up to 75%, and they can also (as of end of summer just gone) test much more quickly for other changes in the genes. After my appointment the genetics counsellor phoned me with a message to say it take 3 weeks to test for big changes in genes, 8 months for whole screening. They are only offering this new set of tests to people who specifically ask and come back to them because they are contemplating some big decision… What am I to do? Have drawn out decision trees and realise only 25% chance that having breasts off is wrong thing. But then …. IF it is genetic (and she seems to think it is, though without proof as yet) then I have 50/50 chance of carrying gene. If I have gene, I have 85% chance of getting breast cancer, if I don’t carry gene, I have the ‘normal’ risk in the population, ie 10%. So the idea of my having a 40% chance of getting breast cancer is nonsense. That is an impossible average!! It is a fiction. I EITHER have a 85% chance OR a 10% chance. Russian Roulette again. Back to that.

And she is the first person to really see all the issues, and to appreciate and back up my decision not to have reconstruction… thinks the docs will soon revise advice about reconstruction because of risks that are presently quite underplayed. Of course some recon ops go very well, with very impressive results, although often painful and difficult, and with more surgery needed to sort out problems. And there are the horror stories. A nurse friend this morning told me of her hairdresser who developed a new tumour behind her silicone implant, which cannot easily be detected or operated on because disguised by implant etc. Ugghhhh.

With the genetic counsellor I also talked over implications of genetic situation for other family members, eg my bros and their children, and my son etc. All depends on if gene changes are found in my mother’s genes, and then mine, then gene testing is possible on males who can also of course develop breast cancer or pass on the bad gene to daughters and sons.

 

Friday 3 November 06

‘Dear [cousin]

This is to update you after my conversation with the genetic counsellor yesterday afternoon. Sorry this is somewhat telegraphic. Hope I have taken in what she said and will try to reproduce it here clearly.

I did let her know your recent medical history, I do hope that is OK? She sent her very best wishes. Also said she is so glad you and I are in close touch as this really helps them do their job.She talked me through how the process of testing will go forward.

1. They can’t test us all simultaneously. They’ll do the test for big gene changes and omissions on mum’s material first. This result should be through in 3 weeks ie by 23 Nov.
2. If there is anything showing, they will then test mine for same. In this instance I would put surgery on hold to know my result pre-surgery (another 3 weeks to test my genes for these big changes and omissions).
3. Meanwhile they will test mum’s genes as fully as they now can… for small changes up to about 90% of the genetic material. This screening does overlap somewhat with testing we’ve already had but also tests more thoroughly and more reliably. She stressed though that all this testing (both the 3 weeks and the 8 months) is still not comprehensive, ie if it comes back negative that still cannot mean that there is not some gene involvement in our family. Again, if they find anything then mine could be tested, another 8 months after mum’s 8 months, ie 16 months from now.
4. If anything shows in mum’s material and mine, then they could go on to test your mum’s and yours. Then later any other members of family as necessary.

Do let me know if there is anything more you’d like me to ask her etc.

I have had confirmation of an op date of Fri 24 Nov. Obviously this can be moved if necessary.’

 

What a week it has been, all this and the news that [my cousin] has got multiple tumours in her chest wall and lungs, poor darling. She is now even more openly supporting my decision to have surgery.

And E and I met the photographer, Laura Stevens, in Brighton to discuss the breast/body photos, session fixed for this coming Tuesday at her studio. I’m looking forward to that now. Must think of props!

And E and I have done the first two body casts with plaster bandages. Wow! I have shed my own skin twice over; as the plaster dried it felt like my skin dropping away. And now I see myself, objectified. I think these experiences are going to be an interesting way of meeting myself and my breasts and being able to look at myself and find my body beautiful. Much to be written about this. My first two other selves are now drying in the attic bedroom.

Meantime I prepare for the last mammogram and ultrasound on Monday at Old Broad Street.

Today I saw EW for lunch at the Oxo Tower, as a special treat. We hadn’t been able to meet like this in years. I couldn’t bring myself to tell her about the op. I wrote her an email afterwards. She was lovely, and very supportive.

All my homeopathic remedies have arrived from Nelsons for pre- and post-operative care.

 

Tuesday 7 November 06

About to set off for photo session with Laura Stevens, the Brighton photographer who has taken me on. Can’t think what ‘props’ to take so have put out the sun and moon rug I was given for my wedding, and which I had with me in hospital when F was born; my old conch shell; several leather bound books (made by me); the art nouveau moonstone necklace that P gave me.

Yesterday was the penultimate of the London appointments pre-op. I had a mammogram and ultrasound at 31 Old Broad Street. The radiographer for the ultrasound was the same one again and set me so much at ease. Told me outright that I’m making the only and right decisions. Right to have op, right not to have recon, right to do it now, right to choose this surgeon (‘meticulous and so careful’), right to do what I feel I must do. ‘I would make all these decisions in these circumstances’. It was such a huge relief to hear this at last, like a prize I’ve been waiting for, a breath of fresh air too after some of the male reactions. So the radiographer yesterday and the genetic counsellor have both been very supportive.

After the tests I went speed shopping in Peter Jones to make sure that Christmas will be OK for F and to get myself button-up pyjamas and sponge bags etc.

I have a lot of communicating to do now. It has begun. All my closest friends, who will then spread the news as appropriate and as necessary. And now I have just written to F’s headmaster so the school will be prepared to take extra care of him.

One more appt with the surgeon next Tuesday evening. To have last talks about nipple grafts, premeds, genetic situation, and view more mastectomy photos. Then I’ll be in the chute.

 

Friday 10 November 06

P’s last day at work. All the rush and stress of this year’s relentless route march at work will, I hope, drop away from him over these next two weeks. F will have us both and it will be the longest P has had ‘off’ work’ for over 20 years.

This w/e we are off to Aldeburgh for a little break and some fresh North Sea air.

Then we move into a new phase of preparation. I am aware that when we come back from Aldeburgh I’ll be very busy, and I want to achieve most of the working and domestic readiness (and complete all the communication!) by P’s birthday on the 19th so that I have the last few days to write and walk and go inwards, preparing my spirit and body for challenge and difference. The operation. Life after breasts.

The communication campaign has taken up large slices of this week… who to tell on the phone, who in email, who in person. F’s school is now more or less covered and I have had acknowledgements from key members of staff. On the old/close friends front I have been very struck by the solidarity. Some awkwardness from one or two – men mostly, who just don’t know what to say and are rather embarrassed I suspect. But I can carry these because I have so much strong support from those very close. What I have to keep remembering is that it is not so important what others feel or think.

I am in the ‘last of’ mode and saying goodbye to parts of myself but hating to admit that’s where I am. Two weeks is still long enough away to think the op on the horizon, and then there’s the genetic testing situation, as yet unresolved. That still could change things at the last moment. It sharpens my focus about what a decision of this scale is about. Right now I cannot imagine being able to reverse it or wait another three weeks, that would seem like having got the engine all steamed up and ready and then having to let it cool before steaming up again. But it may yet have to be that way. Would I really want to go ahead if there was a 50/50 chance of not having inherited a bad gene? I’d want confirmation wouldn’t I?

 

So a few days ago, I stood in Laura Steven’s cold loft at the top of a vast Edwardian house in Hove, a chilly November Tuesday, in black lace knickers new from M&S, and nothing else bar a little eye makeup. And I cracked jokes, nervously, while she (whom I only met last week for a quick briefing chat in The Dorset pub) adjusted the lights and reflectors (which E helped hold and move) and told me to lean this way or that, hold this or that up to my face, look down at the book, throw my head back, move in front of the camera, and I quite enjoyed this by the end of the two hour session, relaxing as I got more tired and less protective. I became more natural and used to being nude in front of camera. I’d brought props but in the end I felt most myself when I was standing alone, just me and my breasts. Our goodbye shots.

My awareness of myself was not of being whole physically before I lose parts of me, but on my sense of my own coming together in this year. I have gathered myself in and nothing can change that, certainly not having my breasts removed. Though of course there’s also a sense that I’ll have recorded something I treasured, came to love too late really. Only this summer and autumn as I’ve been saying goodbye have I really loved these breasts of mine. All to do with inhabiting my body and connecting the physical with the inner. How I’ve enjoyed being all woman, and how special it has been to have a reason to celebrate this woman-ness. There’s nothing quite like a deadline. Last two weeks of bras, last mammogram done, last ultrasound done, last meeting with so-and-so whilst I have breasts. Last time I wear this top, this sweater.

 

Wednesday 15 November 06

Last night was the final pre-op meeting with the surgeon. P and I both went, meeting at WH Smiths on London Bridge station as usual at 6.15. P had spent the day clearing up files and dealing with email in his office, his last visit there until January.

 

But oh the story of the breasts… this is the week when I should be feeling solidly preparatory for the op itself and recalling breast memories and saying goodbye to the boobs, look where we are, being called yet again to reassess the decision/s. So last night was mainly about discussing nipples and genes!

The nipple situation I have now grasped is at the limit of my explorations… the surgeon has discussed the various options with plastic surgeons and could tell me

1) they could do an experimental op where the skin shrinks in folds onto the chest wall after removal of breast tissue, retaining nipples. Sounded awful and very unsightly cosmetically.

2) they could do the thing of 2 incisions, one above and one below the nipple so leaving nipple on bridge, but risk of blood supply being inadequate to sustain life in nipple, then might require skin grafting etc which would be complex, painful and risky and could turn a simple op into a nightmare. This would also be experimental, and I would be a guinea pig.

3) they could do something approaching the trans-gender op where they cut around the nipple and do the mastectomy that way and then cut a cake wedge out of the breast skin, but he thinks it would not be at all suitable for my size breasts, only any good for very small breasts.

4) back to the skin graft option, grafting the nipples back on but apparently they would v likely ‘die’ and even if they did not, the nipple skin is all that would really remain, the muscle part of the nipple would ‘die’ anyway as it needs much more blood supply than would be there after mastectomy.

Thus I accepted completely that my nipples cannot be saved, and I accepted why not. Amen.

Then on to talk about the genetics. I explained what the genetic counsellor had said to me. And I explained that the tests are being done on my mother’s material anyway, both the 3 weeks tests and the 8 months ones. THEN he mentioned that we might want to try and speed up testing by going to this private lab he mentioned months ago but dismissed. Now as it happens he is anyway going to see them at this lab next Wednesday…. 2 days before my op… to assess what they can and can’t do and find out prices etc to see if they would in general be any use to him and his team etc. He will call me on Wednesday when he has seen them. His hunch is that they may be able to run very full tests as per Guys but much quicker, and of course probably for thousands of ££££. And if they can do this, and if he thinks they are good and bona fide, and if they could deal with the material, then would I want to take this route and put off the op until the tests had been done?

There are no answers. Back to the numbers and probability game, and even more last minute now. I’m aware that there are no absolutes in this. And through all this P and I had the strong feeling, both of us, that the surgeon just is not (I guess along with most other medics, particularly surgeons) ready for this kind of moral/genetic/philosophical calculation with the day by day advances of genetics affecting people’s choices, yet curiously not affecting them. Because the science of all this is still very young. Ten years ago they thought they were able to test for genetic cancers, now… NOW… they realise that they’ve only been testing for a percentage of what they thought they were testing for. Now in 2006 they are supposed to be able to test more fully, but will they look back in 10 or 5 years and say ‘Oh well, we know so much more now, those tests were really crude, we missed lots of genetic detail’ as they are presently saying about the recent past? The surgeon is the one who doesn’t want/can’t yet cope with the possibility that we might (to quote him) ‘regret the operation’ if gene tests subsequently proved I was not, after all, at such very high risk. It is he who does not fully grasp the trickiness of it all. He is not ready for this kind of decision.

 

Wednesday 22 November 06

While I wait for the calls from the genetic counsellor and from the surgeon, P and I make another huge assault on the backlog of domestic chores. He’s been off work now for a couple of weeks and has returned emotionally for the first time in many months. We are mending, filing, getting someone to deal with the leaky fridge, the wobbly bolt on the garden gates, ordering a new TV we’ve promised ourselves for years, packing up old books and videos for the charity shop and school Xmas fair, hoovering, shifting furniture and on and on. I have updated my Will, just in case. Wonderful surges of nervous energy alternate with emotional highs and lows for me as the days tick by and I still haven’t felt myself entirely ready mentally or physically, until today, or rather last night, when a combination of the last massage + writing session with E and then a bumpy night brought me to a new very calm and still place from which I can see beyond the op. Just.

I am packing now, packing books and dictaphone, bath oils and lipstick, new nighties with button-up fronts and many homeopathic remedies, especially Ignatia for grief, and calendula and arnica for healing. My breathing quiets and I know I am into the final stage of preparation. Countless lists and emails and phone calls, time off for swims and walks, but above all a sense of inhabiting a world beyond this one.

P’s birthday on Sunday felt unreal, the lunch out and the cinema.

 

Thursday 23 November 06

This should be the day before the op. Ah, but that is what might have been. Parallel worlds, sliding doors, the planes of life that shift over one another instead of crashing together.

Now it is today, its own day, different from the one we anticipated. I am here by the kitchen window in November half-light, the traffic hissing on the A27’s wet surface, the kitchen clock ticking. And I am not in a hurry, for the first time in weeks, even months. I can let my eyes stay on the shelves of F’s pottery creations and admire the way their glazed surfaces reflect the electric light. I can breathe more deeply than yesterday. I am, yet again, in limbo. A place I’m getting used to this year. A stay of execution, a reprieve, another wait, more time to file and tidy and perhaps to pray. More time to love and count today for what it is. More time with my breasts.

I have to see this as postponement, otherwise I’d go mad. How would I get back to this state of readiness if I climbed fully out of it?

Back to yesterday. First [my cousin] called to know how I was and to ask if there was anything from the genetics expert. She was so very supportive and strong, we talked at length about risk and life is for living and making the most of time. We laughed about all this and about F and chatted about his school life. She is taking French lessons again. I want to use my time well, she said. We talked about my going into the London Bridge Hosp and about whether I’d have a room with a view over the Thames and whether they would let P stay in the room overnight. We talked about physio and massage and soft nighties for afterwards. Finally we signed off, said goodbye.

Two minutes later the phone rang, the counsellor from the genetics dept at Guys. No changes found on mum’s genes in the 3-week tests, ie no big changes and omissions. Nothing to report yet. They will go on to put mum’s material through the 8 months screening and she will keep in touch with me. She assumed I would be going ahead with surgery on Friday, she wished me luck. We spoke of the infancy and groundbreaking nature of current genetic medicine. She apologised for the fact they can’t give more surety, ‘But for future generations it will be different.’ I agreed. No swords of Damocles like this for them. Their swords will be different, no doubt.

I felt reassured talking with her, but in a combination of relief that plans would not have to be changed at the last minute, and disappointment that there was no sign of a hook to be let off. I reported the conversation back to [my cousin] in an email, I explained to P. We got on with the day, installing the new TV, hoovering behind the chest of drawers in the bedroom, eating winter vegetable soup for lunch (the third day running), reading through our Wills which we have redrawn with Friday in mind.

At about 2.45 the phone rang again, it was the surgeon, for me. He’d just seen the Chief Exec and the senior scientist at the new private lab he’d mentioned, and was impressed by the commercial gene-testing set-up. They apparently can test much more reliably and thoroughly than the NHS, and more quickly. And they don’t need a relative’s material, they just test your own genes, and the full sequences. Results in 10 days to 3 weeks, bingo! It didn’t take me more than 20 mins in the car with P to decide to go ahead and get these tests done. £2,000 and a bit of time back at worst, perhaps a more complex few weeks of thinking but it has to be worth it.

All adrenaline gone since last night, all passion spent. Feeling stultified. I only know now that I must continue to take each stage as it comes, make each decision or remake it according to all I have learned and all I can feel intuitively. Meanwhile I am both excited to have the time and unable to know what best to do with it. More lists. People to tell/email/untell. Jobs and tasks to be fitted into a new timetable. F’s feelings to be considered – and time to spend with him. A new day to love.

The infinity of a single day.

 

Monday 27 November 06

It was Thursday and just a few days ago this writing seemed rather jaunty and positive. I am back in the pre-op mode now but have meanwhile been on another long journey within the journey.

Friday morning was the earliest I could call for an appointment with the expert at Opaldia, the company that does these genetic tests. At first the talk was of meeting this Thursday, a whole week away! But he soon realised the importance of sooner for me, and so I climbed on a train with P on Friday morning and we were at the London Oncology Clinic at 95 Harley St by 11.45 am. James Mackay saw us at 12 midday with his colleague, and we talked for an hour around all the genetics issues and my own position and how it has developed in relation to each new stage of this journey. Mackay outlined very clearly the percentages and P said the scales fell from his eyes.

Long story short: he thinks there is no point in our having the full BRCA1 and 2 sequence gene tests. To make it at all helpful we would need to test mum’s material first (3 weeks and £2000) and then mine (another 3 weeks and £2000 or 10 days and £3000) and then this would only be a helpful outcome if mum’s test was positive and mine negative. Otherwise it would be on to surgery anyway, or back to the choice between surgery and screening, with any other outcome. We talked about screening and the ‘new’ idea there, which is MRI. Now I know a bit more since googling, I know this is best done in harness with either mammography and/or ultrasound. There are quite a few ‘false positives’ found with MRI especially until the individual’s breast profile is known. It is very expensive, maybe 10 x cost of mammography, and who would pay each year? And how would I feel about being back in the screening groove? And he pointed out that nothing can prevent cancer except surgery, with screening it’s just a question of catching it earlier.

I understood properly the significance of more than one primary tumour in a family member for the first time. Mum’s two primaries are like two family members getting breast cancer. Two events. [My cousin]’s several primaries ditto. So there have been at least 6 or 7 breast cancer events between mum, my aunt and my cousin. This in itself really pushed me back towards surgery if ever I was moving away from it.

P and I both understood clearly the full range of possible types of breast cancer. 90% sporadic, probably 10% genetic, but of these 10% only 2 genes yet identified and testable. Until very recently only about half of each of these genes was being tested. Hence the re-screening of mum’s genes now.

But beyond all this, JM was great to talk with because he was interested in the whole person, he was interested to know my thought processes, what my work is about, how my emotional calculations have been made, why this particular timing. He wanted to know what we made of how surgeons and other health professionals think about these things, I was able to explain that the surgeon seems not to fully understand the genetics picture. There seems a reluctance to get his head around it. I have led his thinking and continue to do so. We talked of writing about breast cancer and how I might like to, one day. For me this could be interesting.

So I came away with things to think about but I guess I knew right away that nothing in my approach was going to change fundamentally, how could it? The situation has not changed. I as a person have not changed. There is one new form of screening to explore – MRI – that’s all.

Meanwhile I am sitting here on a wet and dark November morning, wondering what all this delay has added. Well, I’ve spent a lovely weekend with P and F, had a few swims, been to see The Queen and slept a lot better than I have in weeks. I think all the adrenaline ebbed when we postponed the op, and Wednesday and Thursday nights last week were such a complete knockout that a new pattern established itself. I am in hibernation mode!

This morning though I have to gear up again – call the surgeon, book another surgery time, etc etc. Then email everyone and then take the responses. Communication on this is quite a full-time job, emails and calls from so many kind people but many of them needing to talk it through or try and understand. And then there are messages from people I wasn’t expecting to hear from due to my father’s telling more distant folk what’s been going on! Second cousins, more distant acquaintances, people I would not normally consider part of my inner circle… and to whom I need to give careful time as they don’t know me so well and need more explanations.

Then I have to refix childcare and dogcare.

Yet it was worth pursuing this. Will be worth something much more I feel. Worth going around my own decisions once again. Worth thinking and reconsidering any alternatives.

My state of mind has been and is remarkably calm and ‘normal’. I’ve surprised myself and P. I suppose I’m just more used to this kind of thing, and stronger than I was and more philosophical! But now I must admit it just feels like I’ve lived this thing too long and I want to be beyond it. I want to think of other things. More interesting things, new things.

 

Saturday 2 December 06

Just about entering now the zone where I again feel the op is on the horizon. The new date is finally confirmed as 11 Dec after some nail-biting hours on Tuesday when neither the surgeon nor admin could yet clinch the date and find an operating theatre free. At one stage it looked like going to either 18 Dec or to January 07. Thank god for P’s backing and insistence that a better option was needed. And the surgeon was glad to have feedback on the Opaldia experience, in that way I am sure too that my appointment with Mackay and what I was able to pass on will help other women in similar situations who need specialised advice.

Every day this week has felt really like a holiday in an odd kind of way. Bonuses of time with P and F. More things ticked off lists, shopping done, walks walked, Wills signed. F’s new bed ordered. But a restless and unreal frame of mind that has had me mainly in my head, yet without much concentration or mental stamina.

I am having trouble now in going through this ‘10 days before the op’ as I have been here before and I think it won’t be until 2 days before that it will feel true this time.       Meanwhile it’s hard for all those around me, they’ve all wished me well already, some several times, or many, and many in email exchanges I wasn’t even expecting to have. But I can feel that this all contributes to my sense of normalising this op, it has almost become the thing on the horizon that I’m so used to being there that it seems of little real size any more. One gets used to it. ‘Oh yes, I’m doing that in a few days time.’

 

Tuesday 5 December 06

The wind has been strong since storms on Saturday night, and the waves at Hope Gap yesterday were long and grey and curving like the Seven Sisters beyond. It hardly gets light at the moment. We are north and the sun is not with us.

Christmas is gathering in the wings. I have ordered food by mail order and on the phone to be collected just before the 24th, and I’ve updated the address database so that P and I will be able to sit down and write our Christmas cards. I’m glad of all the deliveries and the jobs to be done; this time is full of positive things to be doing.

Between times I am retreating, or wanting to. My body has finally relaxed or given in to the sweep of hormones and a heavy and painful period began yesterday evening. It is the relief that I have longed for these past weeks. I think after it finishes I’ll be ready for the operation, cleared out. Prepared.

A week today I’ll be waking up in hospital to day one without breasts. Now I am able to imagine that for the first time. The loss is just around the corner, but so is the new beginning. The relief.

On Sunday night when I went to collect F from friends, the dad was telling me of his secretary who died of breast cancer. It was in her family too. The woman’s sister had her breasts removed as I am about to, prophylactically, and is still alive and well.

 

Wednesday 6 December 06

I’m not even sure what day of the week it is today; the moment of waking I thought it was Thursday and tunnelled into a sudden panic at the thought of having lost a day. The deadline feels real, every hour counts.

The period continues, achy and heavy. I am given over to the process of being female and then to the process in hand – of being female in my family and surviving.

In odd moments now my thoughts begin to go to the more abstract sense of how I’ll reconstruct my own image of myself after next week. How will I ‘see’ my scars? How will I want to dress? How will I portray on the outside what I feel myself to have become? How will I present the new me?

The sky is clear this morning for the first time in days and I can detect the fattening leaf buds of February outlined against it. Midwinter is an illusion, a manmade construct.

 

Sunday 10 December 06

Last emails and last contact with dear friends. It has been busy these few days, ending up with F’s swimming party yesterday evening and the aftermath of that! And in the morning I went to hear Michele Angelo Petrone speaking at Sussex University, he was inspiring all right.

I have packed for F and we have together decorated the Christmas tree and he now goes into the last week of term with two nights at our good friends, then P will collect him and bring him to see me in hospital. This morning I lay in his new bed and he said goodbye to my breasts. He had asked me several days back if this would be all right to do. We talked about the good job they had done in feeding him when he was a baby. I wept.

Time for writing is running out. Time for meeting the future is here. I have swum two days running, this morning when I went out at 8 to drive to the Leisure Centre the frost was crusty and harsh and I loved it.

I am ready, I don’t think more time would help anything now. Body and mind and emotions – all ready.

 

20 December 06

Removed sutures in the bath.

We removed the sticky bandages this morning and exposed the wounds with their remaining paper sutures. The internal stitches are dissolving and when I lie in the bath, first bath, the heat of the water comes into me and I can imagine filling up with warm water through these holes in my chest, through these slits in me. I let the paper sutures soak until they begin to float away from the blue purple plum and yellow skin, then I tug each one and it releases, I stack them on the side of the bath, and watch as small crusts of blood dissolve. The wounds are clean now and quite neat, with small puckered ridges and areas of angry red skin between maps of bruising. This chest is a battleground.

The bath, just the right length, or am I the right length for the bath, blue and scented with jasmine. I say this is a beginning, not an end.

From deep water, lap of water and rippled skin, from an angled place where I look out through fluid window glass up and up to cold-swept winter sky, a high place of jet trails, each fresh incision, straight and white, direct and knowing its direction. How slow-quick-slow the vapour bleeds and fogs, messes, spreads or takes a shape I know. One trail now a cloud whose origin I’d not have guessed. Another crossed, broken and confused. Imagine this sky tomorrow, empty, blue.

 

Thursday 21 December 06

Ten days exactly since the operation, since coming round in the recovery room, the white walls gradually swimming into focus, my ears stuffed with pain relief, a transparent oxygen mask over my face. Thick unnatural smell of anaesthetic. The clinical clatterings and hollow metallic sounds of medical equipment everywhere around my head. The anaesthetist’s voice. ‘You’ve done well, it’s all gone well, very little blood loss.’ Later he told me it was a pleasure to work with me. I’ve not heard the patient/anaesthetist relationship referred to as a working partnership before, I liked that.

And it’s the winter solstice, how appropriate, shortest day, most quotient of night, the nights still feel very long at the moment, my restlessness is from lying on my back, unable to prop in either direction and change the pressure points. Sleep is coming better though, generally 2-3 hours at a stretch and spells awake are shorter, this morning I actually didn’t surface, after my last bout of sleep, until 8.30.

I’ve reached that rather unattractive stage of patient-hood whereby I probably seem grouchy and frustrated, most likely because I am. The endless discomfort alternating with muzzy relief, and the periodic bouts of fear that characterised the first day or two (when anyway you have no sense of anything much beyond getting through the next hour or so or doing what you are told or reacting to the drug or the diarrhoea or the bedbath or the meal or the phone call or the physiotherapist or the nurse who comes in the night or the air conditioning) were soon supplanted by better days and hard work and progress. Then the apprehension of the last day in hospital, the drains coming out, journey to make, feeling a fool in tears of pain, relief at leaving hospital, euphoria of getting home.

Now preparing for Christmas. Kindness, so much kindness and love, and I am in the middle of it wanting more rapid progress even than I have, which seems ungrateful and thoroughly awkward of me. I am tired, and not yet rested, and there is tomorrow: another journey to London, then seeing the surgeon for wound inspection, dressings off, draining the seromas that have now become ghastly false boobs, heaving and watery and tight like the early days but in a less positive way. And pathology reports. Then the journey home again, and how I hope for the flat chest to remain, the sense of no breasts at all, I want my body to be willing to heal the two surfaces, not trying to put a layer of serous fluid between one side of the wound and the other, but meeting my new inner surface head on. How I want this.

I am having trouble embracing the numbness although I have worked out what is going on with that and how it is my need to turn away from unfeeling parts, my revulsion from the numb parts of my own body, myself, fear of what I can’t feel, fear of what is not felt, fear of this not stopping. All so unreasonable, I know things will improve but just now need to let myself not be brave all the time.

 

Tuesday 2 January 07

I keep putting off the dive back into this writing, I think partly because I know it drains me physically and all I seem to want is healing, wholeness, to be back at being myself, and to do this I feel I must conserve energy for body, not for this writing thing. But the healing comes, quite fast now, where last week was slow and halting. Strange how this so familiar act of writing can feel very different and alien, since I am protecting myself from fatigue, trying to be economical, fewer words when really I could write a book on the last three weeks alone.

I am contacting myself through a strong in-touchness with who and where I am physically: looking at breasts and shoulders, bruising and swelling and scars and dry flaking skin, and greeting and touching everything. It takes time and time again and again until I look in the mirror and see ME, even find me good to look at, my shoulders more prominent, slight bird-like ribcage dropping to a waist I know and now value more than ever, legs a bit thin and the muscles quite wasted from weeks of relative inactivity but still mine, arms more or less my own to look at. As yet I can’t tell if the ribs are as visible as I think they are, what are these unknown bony bone-like protuberances, shocking the way my healing skin moves over them, all too knobbly. Were they really unseen before? Then I can feel my heart beating when I climb stairs or lie in bed, so close to the surface now, no protection over the heart. I feel if you held me up to the light you could see through me, see my vulnerable heart pumping in my birdcage ribcage. I will soon take flight, maiden flight. For now, though, I wobble on the edge, like the peregrines on Chichester Cathedral last spring, days and days they spent sitting on the edge before the first petrifying dive over onto air. Their faith in buoyancy was the meaning of their hatching and their life. Mine the same.

P has gone back to work today and I am alone with F and finding my own new ways of doing things. Slow, premeditated and methodical, asking for help, aware of every movement and thankful for it. Each upward stretch is a realisation of working against gravity and against the results of the surgeon’s scalpel. I heal, I heal, nights more than most times, lying quite still and feeling that unique fire still burning across my chest, in prickles and embers of breasts now gone, occasionally the stabbing from phantom nipples. There, right there in the centres of the wounds, like vicious teeth on my nipples.

First thing I went through my underwear drawer, again. Took out all the bras, threw out the grey and overused, kept the fun and coloured and newish. What for? I’d never give to a friend… too intimate, nor will they go back in my drawer. Not now. Now I’m a vest girl and my only underwear indulgence will be knickers. I threw out a lot of those too, now I have a pile of black, a pile of white, a pile of thongs and sexy pairs. So what shall I do with the bras? Keep for a while, like the things I couldn’t quite toss out after my mother died. And where? In a place I see them? Or stuffed away in a top dusty cupboard where I’ll never see them? Why is it difficult to be wholehearted? More of me is grieving than I realised. Still some goodbyes to say. Perhaps been too focussed so far on the positive, that ‘Here I am having made it through and I’m not complaining’ person. A little voice inside needs to cry and look at old bras.

I feel changed. Not just my flat chest and the having been through all this and the relief and the excitement at stretches of new time ahead. Not just that. A new composure, a new calmer calm, a new nearness to who I am, my heart at the surface, my outline clear, my body to be held up to the light and let that light through. A clearer Clare. A strong fragility. The tension of an insect’s wing. I am a new creature, a new creation.

The almost full moon comes in through my window and finds me. I feel acquainted with pain and knowing of delight, inhabiting myself in a new way. Coming up for air.

 

Monday 8 January 07

The New Year a week old and my new self a week older and rising further each day. I feel the flow of air over my new/old numb skin and no longer dread it. I was dreaming of being in water in the early days after the op, now I stand in the shower and yes I dream of swimming. And I dream of my skin being exposed to sun and wind, I look forward to the insect beating its wings in air and feeling the lift. A damsel fly hatched from the depths of the pond or pool, preparing to soar!

All the stages of this recovery are reminiscent of different accelerated stages of development. Days 1-3 the pain and blood and rawness, sickness, closed down and unsleeping. Bobbing up through waves of nausea and dizziness and soreness to brief laughing moments. Days 3-10 the slow waking to a new reality, aware of the length of journey ahead, each hour of each day a new challenge. Days 10-20 I paced my head in search of a quicker way through, fatigued, on the brink of the next stage of healing, frustrated, feeling damned. At 3 weeks/21 days a sudden sea change, more confidence, looking out and around at the world, albeit from a particular corner, and realising the foreverness of this body change, not a piece of clothing I’m trying on but a whole new skin, overnight. Less pain each day, less wondering if I’ll ever feel ‘myself’, whatever that now means. At the same time the vast ocean of relief: it’s over, a new world opens up, that decision will never have to be considered or taken again.

Today is 4 weeks post-op, the temptation to think I’m further on than I am, need to take great care not to run before I can walk, need to rest and reflect, need to GO SLOWLY. But everyone says how well I look, how relaxed I sound on the phone. I do, I am. But my body has to recover and I have to grow into the new skin and take time to examine it, be in it fully. I have to put it on each morning and find that it fits. And I have to think about that and about what it means to be me now as opposed to me before.

Meanwhile everywhere around me reminders of the breast cancer bogie, the epidemic. J is ill again and today beginning 5 weeks of daily radiotherapy after a recurrence of her breast cancer in August and more chemo. The Saturday Guardian piece by Marisa Acocella Marchetto giving an account of her breast cancer diagnosis and treatment in New York, delivered via a strip cartoon. Wonderful piece of writing: realistic, honest, funny, unsentimental.

And [my cousin]? No news since before Christmas and I keep putting off contacting her, I feel almost guilty that I have lowered my own risk while there she is going through the late stages of her life, her sentence. By my decision and by having the surgery, I have removed myself from her, I have walked away from her corner and her perspective. I have put distance between us.

 

Thursday 11 January 07

Drove F to school this morning (my first proper drive), my arms feeling just about in control of this big heavy piece of machinery; it seemed a little scary. Ideally I need to prop both elbows, but the right is the one that needs it more and I have the door armrest thing. Could I really have done an emergency stop? I went carefully and amongst the puddles and blown down branches I experienced some element of ‘normality’ and independence. So long since I’d done this drive, P did all the last weeks of last term except one or two trips. And the last time I went in through those school gates in a car it was the same stormy weather and the morning of the op, Dec 11th, P driving. We handed all F’s stuff over to our friends in the car park and a few hours later I was on the operating table.

I recall the moments just before going under. The anaesthetist was asking if I was a Londoner. Yes, I said, born and bred. And why had I moved away from London? I told him how our 3 year old son used to stand by the door of our second floor flat and say ‘out’. That was more or less when I went out.

 

My shoulders, especially the right shoulder, are giving me some pain. I need massage, possibly physio too. Strange how it all happens this late in the healing, I thought I was doing fine. Shoulder rolls sound crackly and I have a persistent dull ache in the right shoulder and it gets worse as the day goes on and if I do too much. I stop when I’m at the keyboard and do impromptu exercises and stretches, need to do this every few minutes to keep control of the discomfort today. Otherwise things are going fine. The Guys masseuse/alternative therapist called yesterday so I could pick her brains about timing of various things. She recommends sticking to back position for sleep. Wait until 6 weeks to swim. Try hypericum for repairing nerve endings and nerves. Mostly of it is common sense. Get massages for shoulders and upper back.

But much of it (the recovery) now is about patience and persistence. The dramatic changes are probably all done, now it’s a long slow incline, upwards, one foot in front of the other. For about the next six months, I guess. Exercises, rest, balanced life, swimming, walking, sleep, massage, keeping fit and healthy, keeping slim for high morale, finding new identity and rebuilding confidence. Buying some new clothes, wearing them well, keeping with my promises to myself. And writing, always writing.

 

Friday 12 January 07

I went for a massage to my shoulders and neck and head today. It has helped. The crunchy noises on doing my shoulder roll exercises are less worrying and the muscles are softer. I can’t lie on my front so she did the massage as I sat. A lot of stretches and friction to improve circulation. I feel the benefit to my head as well.

Chest wounds and scars are tighter than tight again at the moment, must be a particular stage of healing. The seroma under the right breast wound is still palpable and I’m beginning to wonder if it will have to be drained again, after all. Should I wait until my 6-week follow-up with the surgeon? I should perhaps call the breast care nurse on Monday to see if this needs doing sooner than a fortnight from now.

 

What comes to the surface at this stage of the healing? A gap, I feel strongly a gap between the before and the after. I feel a long long distance from the place I was in throughout the autumn. I can’t imagine the ‘before’ and am unable to put myself back there where I had an intact body and took upper body strength more or less for granted.

Is any of it like I thought it would be? Not much, and anyway I had few expectations, I’ve given up having many in life, they are never borne out by experience, in my experience. Things always turn out different.

What did I not anticipate? Most of what I am experiencing, including the ease with my new shape, even pleasure (at least when I am wearing clothing, no, even when I’m not!) at seeing the flatness. Yes, even the (as yet) thin red lines where I was cut. All 18 inches of them, 9.5 inches one side, 8.5 inches the other side… even without breasts my chest is asymmetrical! Including the fact that I still ‘know’ where my nipples are. If I close my eyes and place a finger over my chest and come down, straight down onto the numb flesh, I KNOW this is where my nipple is, the exact spot in myself (not on myself, but IN) where my nipples hardened in excitement, where F latched on, where I felt the milk flow, where the stabbing pain of his one tooth exists still in the shooting, phantom pain that takes my breath away even with breasts gone.

My body leads, and I must follow. Like after the op when I woke in the night and lay there catching up with what had been done to me, processing, arriving at where I had been brought physically. I am running several weeks behind and must set aside the time to catch up, just as I did then in the bright busy rivery London night, my chest burning and pulsing, my mind scurrying alongside.

 

Sunday 14 January 07

Five weeks tomorrow and another milestone or two to note.

1. Yesterday was the first day I’d actively looked forward to things later in the day and thought ‘That’s going to be good, I look forward to doing that’. Before it was more ‘That’s happening later, hope I’ll manage it.’
2. I am now really wanting to work again, get teeth into new year projects. Talk to publishers about publishing farm poems from Woodlands residency. Do sendouts. Get organised for teaching. Some networking. But most of all writing.
3. I think I may have reached the 6 weeks point at 5 weeks!! Hooray. I have full range of movement, albeit at times stiff across chest and shoulders. Reaching up is now really OK and even comfortable when I’m not expecting it to be. Neck possibly no more creaky than pre-op.

 

Wednesday 17 January 07

New emotional stage. My theory is it has been pure physical healing (or almost) until now for the last 4 weeks, this is the 6-week barrier. From now starts the deep stuff, if you let it. Be worth finding out what this magic ‘6 weeks’ means in the eyes of the medics.

Here I am, a member of a new tribe, a tribe of women without breasts, but not a fully paid up member, yes of course a whole-hearted ‘in at the deep end’ member – but people are still suspicious. Healthy women are suspicious that I can do it at all and that it might be sensible. Women with cancer are suspicious that I am not like them. I have not suffered cancer – even the nurses fear that, they aren’t quite sure what to do with it. Doctors fear more… their responsibility too for one’s decision. More: women with only one breast who have to have a prosthesis, even H, are strange and even a little envious that I can do flat. GOING FLAT. What a prospect! That I don’t have to have other treatments – chemo, radiotherapy, that is something to envy too. Where am I? Whose tribe do I belong in? None is the answer.

This is the moment of my new identity crisis. Beyond all, I have to and need to just be me – with breasts or not, searching or not, writer or not, I’m me.

Catalyst for all this was going to a poetry meeting last night and being vulnerable, out there, dressed and undressed, stripped and not stripped, in front of people who are not close friends but colleagues and others. Talking about the op – finding a way to do that. Being who I now am. Feeling OK in all the new/old settings.

 

Saturday 27 January 07

I was discharged yesterday by the surgeon. An hour’s conversation and consultation at London Bridge Outpatients, sitting in the chair I’d sat in for countless hours in the consulting room I’d been in for many more, over many years.

Goodbye! At the end, I went away at first elated, later flat, frightened, a little estranged from the world and from myself – even from my new self (my old self long ago lost, no contact now to be had with that old me who used to sit there with breasts and talk about what to do with them).

I am released anew into the world, those stages behind me, both of us pleased with the results of the surgery. Him for his reasons: neat scars, a patient who has not been tipped over the edge, a happy customer, a healthy outcome. Me for mine: all of them recorded and unrecorded here and more as time goes on. Both aware of having no reason to bind us into relationship any more – my breasts are something historical now, I am one of his unexpected successes, perhaps an anecdote to tell other women, perhaps a curiosity in his clinical experience. He is the man whose hands I put my life into nearly 7 weeks ago and whom I have come to respect, like, even love in the sense that everyone has to ‘fall in love with’ their doctors/surgeons/anaesthetists.

A few interesting reflections this morning, now I am growing into being someone who not only has no breasts but who has no worries about breasts and no reasons to see breast specialists. My task of the past year or two is now completed.

But more than that the habit of years of checks and scans and mammograms and visits and cysts and self-examination. The subject of maximum mortality and risk in my female awareness, something key to my relationship with BEING female, and something that dates back to my own teenage/adult self emerging to find my mother so vulnerable in her most female self, then later our feminine health and continuity in the family tainted and infected with risk and cancer. Those wounds can now be closed, or at least put away, considered in a very different relationship within my mind and body. Something has been returned to me, something that was stolen long ago when I saw my mother lying in that hospital bed in London. I am and can be whole in a way I had not realised was possible. I am beginning to reintegrate. By losing my breasts I have regained what was taken from my mother and from [my cousin] and my aunt and latterly from me – but I still (and even more) have a sense of delight in being female, a sureness in that, feeling safe in this area of my body. Feeling I can be me without that anxiety.

Now it’s onwards into the rest of my life.

 

 

FROM NOTES ON THE APPOINTMENT WITH THE SURGEON on 26 JAN 07

In no particular order)

The surgeon looks visibly relieved to see me so well and ‘happy’ (his words: ‘You look happy’). His mood is light and engaging, he is in no rush at all, we spend a whole hour together, as though we both realise the importance of acknowledging how far we’ve each travelled since early talks about the surgery, when he tried to convince me that reconstruction would be best.

He says I’ve made all the right decisions… especially on the ‘no reconstruction’ front. Amazing turnaround. For me, he says, he has not been worried about these decisions causing mental health problems. He says. I’m not 100% convinced of that, for as he admits himself, you never quite know who is going to be affected in that way. Hence his relief on seeing me OK.

I explain that I get some shoulder aches and pains when I work, so he asks me what I do and we finally talk about my work, all these years later. ‘Normally I ask people early on what they do, but for some reason I didn’t.’ I tell him just a little about my writing.

He raises a query about the prostheses early on in the consultation: ‘Do you have a problem with the prostheses and so on?’ I explain that they’re just not for me, and after some penetrating glances at my chest he sits back and says, ‘Well, you don’t really need them do you? I can see why you might not want them.’ I tell him I enjoy the freedom and the lack of more tightness. This is more honest for me, the new me is flat-chested. And anyway I tell him that most of my recovery problems since the stages in hospital and immediately afterwards have been to do with the ‘steel band’ around my chest, and I don’t need any other tight things around me. He says he should have warned me, that it is always tricky when you have two mastectomies together, as there is so much scarring, the incisions so long right across the chest. Every breath is taxing. As we talk I see him come round to what I am saying about my shape and the honesty of it. This is largely why I like him, he moves in the moment when movement is indicated. He gives, he grows.

On physical/clinical exam, he is v pleased with the results, for 6 weeks on he thinks I am doing extremely well, and the swelling should come down more and more and feeling should come back slowly in numbed areas. The redness of the scars will fade out to white. In time, in time.

Yes please, he’d like photos now and in a year’s time, when the scars are white/silver. I’ll be a pin-up for his patients’ choices.

We talked about tattoos as well. I should wait a year at least. Good. Gives me a chance to think and plan. He saw a woman once who’d had a rose and thorny stem tattooed across one mastectomy scar, he says it was quite beautiful.

I tell him I am very happy with his surgery and how neat the result is. He is thrilled by this. ‘Oh, I really hope you are, I took a lot of trouble to make the two sides match!’ This is touching, his concentration on making the missingness symmetrical, it shows that he cares a lot how my body seems afterwards, for me. But not just for me – for him as a surgeon and a human being. The intention behind his care gives me a boost.

I thank him for the care and sensitivity with which he handled the whole debate around nipple retention or not. I explain that the nipple thing for me has all been about my identifying most with my nipples, the way they epitomise for me the loss associated with losing breasts. I suppose they were, in my mind, the best feature, and all about function: arousal and sex and features to notice under clothing, and then of course babies, the feeding.         I tell him how I get phantom nipple sensation a lot, even now, and can tell exactly where my nipples are in space. We discuss what/how those phantom feelings are, and he interestingly says that the central nervous system delivers more phantom sensation after loss if there has been a lot of pain associated with the lost limb or body part. So, yes, my nipples were a very painful feature, one way or another… Phantom body parts show us how our own brains make our bodies from projecting ‘constructs’ into space. Especially where there’s been pain.

I ask him how long I should go on doing the physio exercises given in hospital. Answer is at least one more month. Swimming and walking good, and other things too. He tells me the jelly + ice cream joke, about the patient who went on eating this diet for 5 weeks post-op because they had been told to eat jelly and ice cream just after surgery.

When I tell him I went into the surgery very well prepared, he asks me what I mean. I explain about all our talks, in that room, and talking to geneticists and radiographers and alternative therapists, and my counsellor. And friends, and relatives, and other things like doing the casting. I tell him other patients might like to think about the casting, and how it helps you distance yourself from your own body.

His parting shot is to tell me ‘You are very brave’, and ‘You’ve done very well’. Such English understatement.

Even walking out of the consulting room, I am aware of a certain bereavement process at work, not grieving for my breasts and for sure not for the op and the fear and all that, but for this whole huge episode of exploration and growth and wonderful contact with great people. I will miss him.

I have made the rite of passage. I have come through.

 

Tuesday 13 February 07

Over a fortnight since I wrote here, this feels like the longest gap since I began, though in reality it may not be, it just seems so many weeks already since I was discharged. The unexpected grief that weekend had some strange and far-reaching effects but then the passing of it over the next few days released a new energy. And off I went.

Wow, the adaptations I’ve made, the growth I’ve felt in my new shaped body and self. I no longer even think about the new shape… Now when I go swimming I sometimes don’t think about who will look at me or why, I am myself entirely and everyone says my shape suits me. Friends say I’ve never looked better. I feel at home. I feel solidly and completely who I am and I am permanently happy, light in spirit. I hop and fly, I drift. I am a bird. At the same time I can feel vulnerable: might I be kicked in the swimming pool? What if I had to do an emergency stop in the car? I think I’ll always feel this now, this lack of something between me and the world out there, but most times I enjoy the sensation. It’s honest and clean and bright. P says I am more naked now than I ever was when naked with boobs. I feel this acutely. I am also a fish – scaled, sleek and without friction in water, or perhaps I’m a diving bird.

I’m having fun with clothes… tight jeans and tops and knee length boots, the paradox of being sexy without breasts amuses me and I feel sage, safe and daring all at once. None of this should matter particularly but it’s as though I’ve been waiting for this shape all my life and it frees me, I look younger and feel in some ways pre-adolescent.

I am regularly swimming 50 lengths now, aiming for three times a week; the stretching is terrific and full. I get tired afterwards and a little stiff but the benefit is the next day, then I am suppler and freer not only across the chest and scars but in the tendons and joints of the shoulders. And I like to think that a little more of the numbness is woken after each swim.

 

Wednesday 21 February 07

A bad day for discomfort yesterday after a poor night on Monday, perhaps to do with the heavy cold I hatched at the weekend. Anyway, whatever the reason, I had knives stuck repeatedly into my chest yesterday, I felt skewered and carved up. And tight across the ribcage and under the arms. Some of the new sensations are random, beneath the skin not in the skin, which is kind of eerie, feeling things underneath but not on the surface. Sometimes the knives take my breath away.

The numbness is still something I shy away from writing about and when I am too aware of it I feel edgy and upset. Yesterday was that. I felt vulnerable and yet as though the op was so much in the past that I had no right to be. It’s nonsense of course, it’s still less than 3 months since surgery, but I felt I should not be in that very raw healing place any more.

Today I am less uncomfortable and I’m also reminding myself it is more than OK to be vulnerable, even sad, feel the loss, feel the healing. I must follow my own path, not say goodbye too quick to the healing journey of all this, there’s a way to go yet. Quite a way.

 

Wednesday 28 February 07

Another month out, soon I’ll be at 3 calendar months post-op and beginning to forget I am post-op. Well not exactly forget, more discount. There are already days when I do discount it. Then something hits me, like someone asking ‘How are you?’ and I wonder why they’re asking so solicitously before remembering that it’s only a few weeks since I was creaking around the house in pain and stiffness with a steel band (unmusical) around my chest, fantasising about lying down. Or just something else hits me, like a general sense of how bloody marvellous it is to be alive and kicking, and how last year the spectre of genes overshadowed my life. At times I’d begun to lose sight of this life force in me, strong again now, driving, eager.

 

Wednesday 7 March 07

These first few days of spring, the push I always feel, again it’s here, again and this year I only have to go with it to feel wonderful. It’s a ride, a free ride.

The scars are starting to fade in places, or to grow over, the new covering skin is silvery and finely stretched, it’s more of a membrane than true skin. E thinks it is coming first where the stitches were not, so the scars are beginning to look like dotted lines! I persist with massaging in Vitamin E oil after my morning shower, before I dress, and then again when I get into bed at night, last thing, after exercising etc. Tightness is reducing, though it is often pronounced the day after I swim my 60 lengths and then a lot better two days after.

 

19 November 07

And here I am more than eight months from my last entry and feeling acutely all the writing I’ve done, but none of it here… nearly 20 poems as part of the small collection begun in Sept, on the writing retreat in Norfolk, I’m calling it ‘Self-portrait without breasts’.

I read three of the new breast/mastectomy poems at a poetry café reading on Friday night and I want to say how it felt to get up there and make public the subject of my healing and inspiration of recent months. I feel that through this recent great productivity of poems I am making the last and fullest transition into my new shape, new skin, and getting up in front of an audience and reading them has placed a marker on the road. How I lived in each emotional stage of each poem as I read them, unlike how I’ve felt reading my work for some long time, because the poems are so new I think but also because they are so seminal to me now, to the person I’ve become and the messages I have to relay. I would like to have these poems out in the public domain soon.

Something was released by reading in public even these few of the new poems. I know now there are more to come to complete the sequence, and since these may come soon I am even beginning in my stronger moments to feel ideas about what I will write next.

I am proud of my body now, though I still haven’t been able to look at the Laura Stevens photos of just over a year ago, but I want to before the first anniversary of surgery is here in three weeks time. Don’t know yet about tattoo or not, am beginning to think not as my flatter and flatter white chest is so like a large sheet of clean paper ready symbolically for all the things I will write, it seems a shame to sully it with indelible ink. At the moment I’m a blackboard/smartboard or something like that.

I am swimming and going to the gym and doing Pilates once a week, I am fit and a good weight. I am used to myself as I now am, even to the point where I begin to forget what breasts felt like. This is what partly drives my wish/need to write the breast stuff before or at least not much beyond the first anniversary of the operation.

 

12 December 07

The day after the first anniversary! It feels significant that I didn’t write here yesterday, it was quite a low day actually, a day of admitting that for all the patterns we try and impose on life, recognise in life, there is probably no pattern, there is only what we have each day, each glorious disordered day. And I was taking stock, year end.

I am very glad to be in my new body and at this stage of realisation in my life. And my chest scars are fading daily, mostly narrow and white now, as though my body knows that it’s time to forget a little, time for the memories to take their rightful quiet place in my life, time to do a lot of other things. Time willing.

I am not sure I will be writing here again. Sometimes it is enough to know when a thing is settled as far as it can be, enough to stop and live for a while.

The sky today is a perfect cloudless spread of azure to a pale horizon, from my top window I see a fine pencilled line by the north side of Mount Caburn, above the white cliff. Some of my favourite Lewes trees cross the green downs boundary between town and sky, so do smoke and steam from chimneys, and so of course do the birds.