Because sexual and reproductive health problems are near-universal experiences, it has always been clear to me that I could expect to go through many of the problems that my work is about. I’ve used half a dozen brands and types of the contraceptive pill, high-and low-dose, combined and progestogen-only ones. I was in an early trial of the copper-7 IUD. For many years I used condoms, which is why I feel I can promote them so much. I’ve had thrush and gonorrhoea. I had an abortion at 11 weeks of pregnancy, having spent more than 3 weeks deciding what to do, and it was approved only because I was single. Afterwards, the gynaecologist said I’ll just pop an IUD in when it’s done, and I said no, you won’t. And he said, well, don’t come back again as we won’t do this for you twice. So I didn’t. I once believed I was pregnant when I wasn’t, and called my doctor out because I thought my very late period was a miscarriage. And I used donor insemination for over a year at age 35, but failed to get pregnant. So I’ve personally gone through a good bit of what sexual and reproductive health and rights are all about. But I thought I was past all that when my periods stopped.
In preparation for writing this, I’ve been trying to remember how it felt four and a half years ago to learn that I had breast cancer. So far, except in an e-mail that became the basis of this paper, I haven’t managed to verbalise it at all. While it was happening, it was mind-numbing, not only because of the fear, but also a sense of total unreality. In many ways, I wasn’t there. I wanted distance from it, and afterwards to put it as far behind me as possible.
I had begun having mammograms at age 50; they’re every two years in the UK. I started taking hormone replacement therapy at the age of 50 too. It was during my first mammogram that the woman doing the scan noticed me sweating profusely from a hot flush, and asked: “Haven’t you been fixed yet?” I hadn’t a clue what she meant, but it was hormone replacement therapy (HRT) she was talking about. I hated hot flushes. I would start sweating just from walking across a room, and other women I asked said HRT kept them feeling younger. Turning 50 was bad enough. So I went for it, and I felt very good on HRT. Several years later, learning through my reading for the RHM journal of the major trials about HRT’s substantial risks, I asked a colleague whether he thought it was necessary to stop taking it. He replied: “Well, everyone has to die of something.” But I was feeling great and wasn’t expecting to die, and I didn’t listen. I had smoked cigarettes heavily for 30 years too, and only stopped at age 45 because I was probably getting emphysema. Me: risk taker, or better, intellectual idiot. Or, if I’m honest, arrogant. I just couldn’t see myself being allowed to end up dead, or not then.
A certain percentage of women develop breast cancer in the two-year interval between mammograms, and in the USA, mammograms are annual for those who can afford it. However, studies show that there aren’t enough of these interval cancers to justify the extra expenditure for universal annual mammograms, not in the UK let alone countries with fewer resources. Indeed, most women in the world are lucky to have even one mammogram, including the many women in the USA who have no health insurance.
So there I was, a fairly high-risk case, having never carried a pregnancy to term and never breastfed, on HRT for five years already. At the age of 56, some time in mid-2003, I began to feel a lump on the side of my left breast. It turned out that I was one of those whose cancer developed between mammograms. Or maybe it just didn’t show up on the previous mammogram. I’ll never know. I first went to my GP in October 2003 and said there’s a lump in my breast. I remember procrastinating for some months before that, because I was afraid. Yes, even someone as aware as me. She examined me and said no, no, that wasn’t anything to worry about. That wasn’t what breast cancer felt like. So I put it out of my mind, and went to the USA the following month to visit my family.
In January 2004, after I got back, I started to worry about it again so I went to see the GP once more. Again, she said she didn’t think it was anything to worry about. By then, it felt to me as if I had a small egg in the side of my breast. I asked her please to refer me, that I was really worried. So she did, and gave it high priority. In early February, I had a mammogram and an ultrasound at the hospital breast cancer clinic, and a biopsy was taken. The whole appointment lasted about three hours. I asked the woman who did the mammogram to look carefully as I had a lump, an egg, which she could clearly feel. She and the two women who did the ultrasound and biopsy were great. Crisp, professional, cheerful, and highly skilled. While waiting between the two procedures, a nurse for whom it was one of her first days in the breast cancer unit, plopped down exhausted on the seat next to me in the waiting room and starting chatting away. She has been there ever since during almost all my appointments and sometimes I see her in the supermarket. Every time I see her, I get a big hug and lots of cheer. It was clear to everyone that first day that I had cancer, but they always wait for the biopsy results before they tell the patient straight out. Even so, I knew, and they made sure I knew, because coming to terms with it had to begin as soon as possible.
The months between February and July 2004, when I had surgery, are mostly a blur. I saw a breast cancer surgeon and an oncologist. The surgeon was a vibrant young woman with a hip problem that needed surgery not long after she operated on me. She was considered an excellent surgeon who did a good job of cosmetic repair, to minimise the scarring and deformity. The oncologist was an older, avuncular Scotsman, with long experience and a wise demeanour. They worked together in a team of about a dozen professionals, and took diagnostic and treatment-related decisions as a team before discussing things with patients.
They told me I had a cancerous tumour, and a lot of diffuse cells around it, and that it was hormone-dependent. The latter meant the HRT had been feeding the cancer, helping it to grow. End of HRT, of course, bye bye, I still miss you. They proposed a new protocol that they had begun using: first, for at least several months, I would take an aromatase inhibitor, anastrozole, which they hoped would shrink the tumour sufficiently that I wouldn’t need a mastectomy. This drug, one pill per day, is only used for hormone-dependent tumours. For those that aren’t hormone-dependent, another form of chemotherapy is used instead, also before surgery. My first response, however, was that I wanted the whole breast removed. I didn’t want the cancer in my body for a minute longer than could be helped, and I didn’t want anything to do with my breast anymore, because it had become my enemy. Both the surgeon and my dear friend Ann, who had had breast cancer herself 20 years before, and whose BRCA-linked cancer came back not long ago in the form of a peritoneal tumour that is currently under control after chemotherapy, who accompanied me to all my appointments in those early months, urged me to accept the treatment being suggested.
First, I decided to see the best breast cancer surgeon in the UK for a second opinion, but also to ask him if he would do my surgery, because he had done Ann’s. He was semi-retired and no longer operating, though. Apart from confirming the size of the tumour, 5 cm, which he squeezed so hard (the old-fashioned form of measurement) I almost fainted, he explained bluntly (I clearly hadn’t got it yet) that cancer is a systemic disease. That means it isn’t necessarily just in the place where the tumour is, but is liable to send out cells to other parts of the body too. He said my tumour had been there long enough that if it was going to throw cells all over my body, it had already done so long ago. That really frightened me. The idea of a tumour or the whole breast being removed was nothing by comparison. He explained (as I’m sure the team at the hospital had also explained) that the anastrozole could not only shrink the tumour; it could also kill any cells that may have migrated elsewhere, and was worth starting immediately. I agreed to the recommended treatment without further ado.
Meanwhile, I worked as hard as ever. I suppose I saw the doctors as I remember many hours in the surgical and oncology waiting rooms, and watching with sadness the many people around me with cancer who did not look or feel as well as I did.
The only thing I do remember, too well and still almost every day, and which made the cancer into a minor sideshow in my life, was seeing my friend Vaughan out in the world for the last time in April and his death at the end of June, a week before my surgery. I spent most of the month before his death in his room in the hospital intensive care unit, looking after him, keeping him company, and encouraging him, willing him with every fibre in my body, to stay alive, so that I could stay alive too. I will never forget the burning look, almost of complicity, that he gave me when I said to him that perhaps for the first time I understood how he had felt for so many years, having a life-threatening illness. He fought, he had been fighting for his life for several years by then, but this time, death won. Sometimes, I’m not sure if I’ve ever left that hospital room.
I flew home for the surgery in a daze, and was in hospital afterwards for about five days. It went very well. The tumour had shrunk to half the size on the medication and the outlying cells in the breast had disappeared; they were able to remove all of it with a good margin of clear tissue on the first go. And I was able to avoid most of the underarm lymph nodes being removed. Vaughan’s sister, who is a nurse-trainer and who has also had breast cancer, a mastectomy and breast reconstruction, taught me everything she knew about it while we were at the hospital with Vaughan. She advised me to ask for a procedure new to the UK but already common in the USA. My hospital at that time had a policy to remove all the lymph nodes if the tumour was more than 2–2.5 cm in size. Alice suggested a procedure in which they inject a radioactive dye in the tumour, which drains into the lymph nodes, and the first three or four nodes where it drains are then identified as the most closely linked to the tumour. Only those are removed. If no cancer is found in them, it is highly unlikely that the other nodes will be cancerous. If cells are found in the initial nodes, though, further surgery would be needed to remove all of them. I was willing to take that risk, again. Though my original tumour size would not have permitted it, the surgeon agreed. She took five or six nodes to reassure herself it was enough, and all were clear.
At some point, I think before the surgery, the surgeon called me into her office. Her whole team were there, many of them quite young, standing in a circle round her desk. I had no idea what was going to happen. She introduced me to them all, and said: “I want you to meet this patient, because she is going to be a survivor, and you need to know the good news stories too.” This practice is carried out so that the staff don’t lose hope. And they all clapped, smiling at me, and I didn’t know what to do with myself, because I was the only person in that room who didn’t feel in the least convinced it would be OK.
After the surgery, I went back to work as soon as I could, after a few weeks, I think. I didn’t want anyone to look after me. There was too much emotion to cope with; I thought I needed to be alone. But then I got very low. I should have stayed home longer and I should have accepted my cousins’ offer for one of them to come over and take care of me. I got quite a bad infection in the incision, and felt even lower. I dealt with the depression alone, but not very well. A junior hospital doctor prescribed an ineffective antibiotic for the infection, so it got much worse. My GP then gave me the right antibiotic and was furious, as the breast clinic had done this with more than one of her patients. However, my GP had to reconsider her own role too. I wrote to her after it was over, saying that I felt strongly she needed to refer more women in my position for diagnosis. She was terrific in her response, and I still count on her for my primary care. But a friend of mine, who is also a GP, talks about women who come in wanting to be referred when there’s definitely nothing there, and that it is important to get the “worried-well” to accept that nothing is wrong, without using scarce resources to prove it. So it’s hard to get it right.
I worked like crazy the rest of that year because I didn’t want to think about anything too much. In addition to the journal, we were organising the International Consortium for Medical Abortion’s first conference in South Africa in November 2004. I think everyone at the conference must have known I had cancer by the time it was over, because of the ovation I was given at the end of the closing session. I’m glad I never realised it till the end; I couldn’t have coped with 100 people’s sympathy all at the same time. I could still barely cope with any expression of sympathy or support, because it made me confront the seriousness of what I had.
At the three-monthly follow-up visits, and now, in my fifth year since the surgery, six-monthly visits, which alternate between the surgeon’s team and the oncologist’s team, I seem to be in very good health, unlike some of the other women I see in the clinic waiting room. My hospital catchment area includes many women who are working class and most of those seeing the doctors are older than me. The hardest part of being on the surgical ward and now in the outpatients clinic is seeing how poorly many of them are, and the fear in their faces that they won’t survive. While we were in hospital, I felt helpless watching and talking to some of them, and focused on the woman across from me, trying to cheer her up, give her some hope and courage. I can still see her crossing the room, bent over after her mastectomy, her posture expressing defeat, though they told her her chances were good. Depression in relation to breast cancer is a serious issue. Studies show it can last for a number of years, and believe me, I know.
I was advised to have radiotherapy by the oncologist, which of course I did, but they didn’t think chemotherapy would be necessary. Chemo would have reduced the risk of recurrence by a few percentage points, but the risk, they thought, was low anyway. So I agreed not to have it. It was clearly not what the oncologist wanted me to choose so I followed his advice, with great relief. The radiotherapy four times a week for five or six weeks, for a few short minutes per day, tired me somewhat but the terrible burning of the skin that some women experience didn’t happen with me. So far so good.
And then, as suddenly as it had begun, the treatment was over. I was on my own. It felt akin to needing to learn to walk again. I had become incredibly dependent on the doctors and nurses for reassurance. In some ways, I was able to block out the whole experience because of the loss of Vaughan, as well as my mother’s death 14 months before his, which became closely linked. So I just wanted to forget I had cancer. I was offered a support group but refused. The nurse-counsellor in charge of it was the one person in the unit I couldn’t relate to. She was very good with some of the other women, but she didn’t know what to do with me. And my feminism deserted me. I didn’t want to have to deal with other women dealing with their cancer in a support group. I don’t think I could have coped if any of them had become ill and died. Not then, probably not now.
During follow-up, they do such a thorough job of examining me that I can feel what they feel, that I am still clear. With the now-yearly mammogram, I get to look at the films and ask questions. Then I go home and start to breathe again till the next appointment, only thinking about it when the date approaches. Unless something makes me start thinking about it, such as now as I write this, it seems a long time ago. However, for three years I got a lot of discomfort and still do periodically, mostly in my back behind the breast, under the skin, nerve endings still sore from being cut, I guess, and also an aching where the cancer was and behind the nipple. Sometimes I get an acute stab of pain under the ribs below my breast when I twist a certain way or bend forward to pick something up. After asking what this was several times, I was finally told it is common three or four years after surgery, but the cause is unknown. Seeing different doctors each visit, you can never be sure a question like that will be answered, especially about pain. Doctors don’t seem to know what to say about pain; so often, they nod and say nothing.
Even with the loss of only a few lymph nodes, I had aching down in my left arm for well over a year. I exercised it daily and still try to do so often. Vaughan’s mother, who is a retired nurse, warned me the arm would ache after flying, which was true, so I always get an aisle seat with my left arm on the outside, so that I can stretch it regularly.
The other thing I experienced, for the first time, was the stigma attached to cancer, which I felt towards it in great doses, though only in relation to myself, not others, which is odd but true. I didn’t want anyone to know I had it. I was furious at people who told other people without my permission, who then called, or came up to me, or sent an email, wanting to know if I was OK. Smack their faces. In a few cases, I saw eagerness to hear bad news and then to sympathise. Yes, don’t say it doesn’t happen, the fact is we all do it. How are you? some ask, even now, meaning but almost never saying: is the cancer back? My answer is, always, “so far so good”. And they nod, knowingly. Good, they say, relieved for me. But do they actually know? I wonder. The ones who know mostly don’t ask. They know you’ll tell them if, or when, it comes back.
Many people still don’t know I’ve had breast cancer, or didn’t before reading this. Sometimes I mention it to someone in passing, and realise I’ve just sprung it on them for the first time, and they almost jump out of their skin.
I don’t remember what it all felt like, nor do I want to. As with pain, once it’s gone, you remember how awful it was but not how it felt as such. Just as well. I’d not had anything serious like this before, unless you count arthritis; I rarely even get colds. Partial loss of hearing in one ear is having a greater effect on my ability to participate in the world than the cancer has, at least so far. But the anastrozole carries a risk of osteoporosis, and I am on the edge of getting it, so I need to be careful. I remember not wanting to touch that breast for a long time after my diagnosis. I only got over that when I mentioned it to my nurse-friend at the clinic, who reminded me how important it was to examine myself regularly and above all, not to be silly.
“...There was a fine line across my chest where a knife entered, but now a branch winds about the scar and travels from arm to heart. Green leaves cover the branch, grapes hang there and a bird appears. What grows in me now is vital and does not cause me harm. I think the bird is singing. I have relinquished some of the scars. I have designed my chest with the care given to an illuminated manuscript...” Deena Metzger ©1988
I have no idea whether my treatment will continue when the five years is over, or in what form. I don’t ask. The sense of loss that dogs me, though, mostly shifts to having lost the most important person in my life at the same time. Perhaps the most important outcome is the loss of belief in my own invulnerability. The cancer can return at any time. I’m waiting for it, always looking inward for reassurance that it’s not yet. Before I had cancer, I was still 30 or maybe 40 in my head, or 45 on a bad day, and had all the time in the world. And now? I know there will never be enough time.
Everyone agreed that the surgeon did a wonderful job. The scar is barely visible. The breast is slightly smaller than the other one and the nipple a bit flat, especially when I raise my arm, and yes, I’ve got hot flushes again. But my breasts are still there, and if they’re good and stay empty, they can remain where they are.
I love our National Health Service, now celebrating its 60th anniversary, whatever its flaws. I didn’t pay a penny for what was brilliant care, except through national insurance. As Tony Benn said on BBC Radio today (14 September 2008), that’s the only ethical way to fund health care. I couldn’t ask for more. The hospital is a ten-minute walk from where I live. I supported the campaign for its refurbishment and against its closure. It is now a designated specialist cancer centre, including for breast cancer. The breast cancer unit and the wards have been moved to a beautifully done-up building (my bed four years ago had probably been there since before the war) and the waiting times to be seen have been greatly reduced. I give money to the national cancer campaign, and having cancer made this journal issue a necessity for me. I certainly won’t procrastinate again or feel shy about asking to be referred when the next thing comes along. I’ve had a very close call, as have many, many other women and men with cancer whom I know, but we’re still alive and still kicking, and thanks to medical research, looking forward to staying that way for a long time to come.