Learning Curves

Copyright © 2018 Helen Gaize

The moral right of the author has been asserted.

Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers.

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ISBN 978 1785894 084

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A catalogue record for this book is available from the British Library.

Matador® is an imprint of Troubador Publishing Ltd

Contents

Foreword

The events described in this book began fifteen years ago. During the ensuing years, I know that many aspects of treatment and practice will have changed or improved. Fifteen years is a very long learning time in terms of the treatment of cancer and in the world of plastic surgery. However, I can only tell my own story, and that is what I have set down here for you. It is important to state that, for most people, the journey from diagnosis to discharge, even then, was very much less complicated, and very much swifter, than mine – but I can only write from my own experience. I am, in any case, delighted with my positive outcome!

As is often the case in this genre of writing, some names of persons and locations in my account have been changed in order to protect the privacy and rights of others.

I owe huge thanks to all of the surgical, medical and hospital personnel, without exception, who were so patient with me and my trials and demands. They not only saved my life but quite literally made me the person I physically am today, and that was some task!

Huge thanks are due also to Professor Jane Plant for her wonderful book, ‘Your Life in Your Hands’, indispensable, in my view, as it is so very helpful to those suffering from breast cancer. She has books to help those diagnosed with other cancers also.

Those who are affected by Life and fertility issues similar to the ones described in these pages can now find a rich source of information and help from the website of NaPro TECHNOLOGY and the work of Thomas W Hilgers, MD, whose definitive textbook was published in 2004.

The many people who accompanied me on my journey and as I wrote know who they are: they are too numerous to name. They also know that I will never be able to thank them enough for all that they have done for me. Without their support I would have been lost. I am particularly blessed in my family; thank-you all.

Most importantly, and always… Glory be to the Father, and to the Son, and to the Holy Spirit, as it was in the beginning, is now, and ever shall be! Thank-you, God! Amen.

Part One

Learning Curves

and

Pearls

I had done everything right. That was what made the whole situation somehow harder to grasp. Mum had died of breast cancer when I was thirty. I had attended for regular mammograms since. I had been ‘breast aware’. A couple of lumps had been removed and investigated as a precaution; they were benign.

Self-examination of my breasts had always been difficult. Due to that surgery, and also to fertility treatment I had received in my twenties, they were always ‘lumpy’. They were also large – a size 34 G or H cup – which no one outside an unhealthy media spotlight could possibly desire! Indeed, I would have qualified for breast reduction surgery on the NHS, had I sought it, due to the damage caused by the weight of the bra straps on my shoulders. However, I had done my best. Throughout the period of my cancer treatment, I found this rankled with me more and more: I had a powerful feeling that, despite everybody’s best efforts, the system had somehow let me down. After all, we are continually told of the importance of early detection, yet, despite everything, my tumour had obviously had plenty of time to become established…

As I undressed one warm evening in late April I noticed that there was a really appreciable impression of the seaming of my bra on an area of my lower left breast. The area seemed swollen, as if lymphatic flow had been impeded: as if that clear fluid that travels round our bodies and is part of our means of fighting infection had somehow got dammed up in my breast. I told myself that the day had been hot and everything would look better in the morning. It did. Better, but not right. The skin appeared thicker there when pinched too, and try as I might, I could not make the skin of the right breast appear the same. I waited about a week. This was not going to resolve. I made an appointment to see the doctor.

In common with most General Practice clinics these days, at mine there was usually a long waiting list to see the doctor on whose list you were registered, but it was possible to be seen by the duty doctor in the practice as an ‘emergency’ within a day or two. That was the option I selected and I saw, late and tired one evening, a very experienced male doctor who had been with the practice for years. It had obviously been a very long day for him. I could see the weariness in his face as I launched into my ‘I’m sorry if I’m bothering you for nothing, but…’ routine. I think he truly thought I was. He was very kind, examined my breasts, pronounced that the states of right and left were pretty similar as far as he could see, agreed that they were large and difficult to examine and told me, to my immense relief, that he thought I had nothing to worry about. I went home so happy!

The euphoria was short-lived. Soon I was showing the area of concern to one of my closest female friends, who happens to be a nurse and midwife and has seen a lot of breasts in her time. She pronounced the breast definitely oedematous, swollen with fluid. I knew she would. I knew it was. This was just not right and it wasn’t going away. I had to do something.

About three weeks after the doctor had given me the all clear I contacted the Breast Care Clinic. I made an appointment for a consultation myself, and this was only possible because I was already registered as a patient there due to my regular mammograms. I was not due to be seen by them until the following November, but the appointment was brought forward at my request because I felt I had noted significant changes. I had last been examined the previous November, and this is interesting because, as I understand it, the cancer must have been present at that time, yet it had not shown on the mammogram and I had been given an all clear for the next twelve months. Now, five months later, I was sure that I was detecting something alarming that the medics had so far missed.

It is important at this point to state that I was in a very fortunate position here. Most women would not have had access to the clinic as it is necessary to be referred there by a GP. Since I was already registered I did not need a re-referral, but remember that the GP I had seen had not thought it necessary to take the matter any further. I do not doubt his good faith or his healing intentions, but I am so glad that I was able to seek further help for myself and I did not have to wait until November.

I was seen at the end of the first week of June. On that very first visit a consultant with a heart of gold, who whirls around the hospital abrading the floors with his shoe leather, mobilised everyone in his power on my behalf and achieved a mammogram and an ultrasound scan for me, both without appointment, a normally impossible feat. Both were inconclusive, but he felt that there was a problem to be solved and made an appointment for me to see the head man in the team the following week. In fact, I owe an awful lot to the kind doctor who, I think, had given up part of his lunch hour to do my ultrasound scan. At some point during that week, as I understand it, he held a magnifying glass over the x-ray film from the mammogram and identified calcium deposits. The kind consultant, when informed of these findings, rang my husband and suggested that I should have a biopsy at my next appointment in order to look more closely at these, rather than seeing his chief.

So it was that one week after the first appointment I turned up for minor surgery. Right from the start, a phrase had to be used that I learned to hate, because I have heard it so often and in so many contexts since all this began. ‘Normally we…but in your case…’ The problem was always the size of my breasts. The quest for samples of the calcium deposits was described as searching for a needle in a haystack. I was really very fortunate, however, because our local breast unit is one of the best in the country, and the level of treatment offered to ladies in my position is often very much a lottery. I know that, since that first consultation, I have had the very best that those who worked on my case could offer and this is largely due to the dedication of the staff, though up-to-date equipment is a very positive bonus.

My left breast was clamped between plates as for a mammogram and I realised that, once again, I was to be exposed to x-rays in order for the treatment to take place. In these days when babes in the womb are so often considered disposable, this doesn’t always seem to be a major issue to the medical establishment (though women who know they are pregnant are asked to inform radiographers, little attention seems to be paid to the possibility of an early unplanned, unknown pregnancy) but if there was a tiny life at stake, it was a very important issue to me – and according to my belief, to the God who put it there. This would be my second x-ray in eight days. Before the emergency mammogram the preceding week, I had to shoot into town and buy a pregnancy test. The hospital had been unable to supply one and unwilling to proceed with the examination without the result of one because I could not sign a declaration that I was not pregnant.

My husband and I did not use contraception – why would we, when we spent much of our early married life on fertility treatment? I have been pregnant three times and never carried to term. We have two wonderful adopted children, the children not of our bodies but of our hearts – but if God had chosen to send us another late in life, we would not have wanted to close doors! So now, once again, there was great debate. Finally, the good doctor said that had I been his mother or his sister, he would have urged me strongly to proceed with the examination, and on the strength of that, a lead apron was produced, wrapped around my abdomen, and we were away!

‘Normally, we take five or so samples, but you have been very good because we have had to take fifteen to be sure that we have what we’re looking for.’ The doctor was kind, gentle and thorough, and the nurses generous afterwards with hot chocolate to drink and a large, fancy, chocolate sweet to eat. I had been ‘clamped in’ for about an hour and was trembling with shock when I came out. I needed blood sugar, and I was sore. I teach, and that evening was to be a particularly gruelling parents’ evening. I went. Somehow, the routine has to go on. I just drank a lot of sweetened tea.

Looking back, I wonder if I would do such a thing again. The biopsy, almost always relatively quick and painless, had, because of the size of my breast, undoubtedly been very traumatic. After it, I really had been in a state of shock. Behaving as most conscientious workers would in the circumstances, it had not really occurred to me to just go home and rest; I felt my responsibilities to my job too keenly. Yet when I recall how I was feeling and how very sore I was, it seems to me now like some kind of madness. We in the West have grown too accustomed to the work ethic. Society seems to divide itself between those who feel at ease taking sick leave as a form of time out and those who find it very difficult indeed to draw a demarcation line between their duty of work and the rest of their lives, frequently to the detriment of themselves and maybe their loved ones. At the time, I fell into the latter camp, but I am beginning, rather late, to learn the meaning of, ‘To everything there is a season and a time for every purpose under Heaven’.

In fact, the machine used for my biopsies had been a very clever one, capable of taking selected core samples from my breast, at various depths, through a rectangular hole in the top plate of the clamp. This was all achieved, without pain during the procedure, under local anaesthetic. Sitting clamped in this fashion for such a length of time had indeed been gruelling and far from comfortable, but every effort had been made at all times to put me as much at ease as possible. With all fifteen cores successfully extracted, the doctor had assured me with a grin that I would definitely have lost weight! The results of the biopsies would be known in a week.

Exactly one week later, I was in one of a row of examination rooms, once again naked from the waist up, and waiting to see the head man, the top consultant. He too is a man of dedication. He has a well-deserved reputation and really knows his stuff. He entered the room, stood reading my file at the window ledge, drumming his fingers the while: then he turned to me and said, ‘You have a problem in your breast, my dear.’ And that was it. I had cancer. When the good biopsy doctor had shown me, under the magnifying glass, the features he was going after the week before, I had said, ‘It looks like the Milky Way.’ It had been purely an observation based on the way the calcium dots appeared to me, like the constellation of that name. The doctor had shot me a strange look but said nothing. Now the big chief was explaining these deposits to me, and I once again used the term. He was taken aback and told me that that was the correct clinical term used to describe the feature. The deposits were laid down by the progressing cancer and provided the means to detect it.

My husband’s face was stricken. I told him that there was no point at all in coming to a place like the clinic to be monitored for ominous changes if we were going to become distressed when they found some. Wasn’t that what it was all about? The consultant was encouraging – a wide local excision to remove the primary and a goodly area of tissue around it; a lymphectomy (removal of some or all of my lymph nodes under my arm) to check that the disease had not invaded my lymph glands; some radiotherapy to put the brakes on any seed-bed area in the breast threatening future development… I asked him how I was going to tell my father.

Not only had my mother died of breast cancer, but when my father remarried, his second wife, my stepmother, had also suffered from the disease. True, she had recovered and had since died of entirely unrelated causes, but Dad was not going to find a third bite at this cherry easy! The consultant suggested there would be no need to tell him. It seemed likely that, if I came in the next week for surgery, the whole episode might well be closed, done and dusted in a matter of months. Although I knew I would have to be honest with Dad, I took this as a very encouraging scenario from the main man and was grateful.

At our centre, when a consultant is going to give you the kind of news I had just received, one of two breast care nurses is called in. These two ladies are particularly dedicated. They are there to hear what the specialist says and to make sure that the patient understands and does not miss important information due to shock. After the consultation, the nurse led me to another room. She went over the details of what I had been told very gently with me. We discussed what I should say to my children, in their late teens at this time; on the basis of the consultant’s advice about my father, we decided that I would explain exactly what was to happen. Abnormal cells would be cut out of my breast, with a surrounding area of healthy tissue, and the breast would be treated to prevent a recurrence. I simply wouldn’t use the word ‘cancer’ as this may be unduly alarming at this stage.

During this interview with the breast care nurse, patients are invariably given a very helpful Filofax, full of information on breast cancer and its treatment. It does seem a bit like, ‘The bad news is you have breast cancer; the good news is you get the swanky Filofax,’ but the intention and the information are both good. I clutched my copy, listened to the gentle advice about not reading bits yet that might never apply to me, such as the passages on chemotherapy, and tearfully asked questions.

I am a keen amateur guitarist. One of my chief pleasures is to play regularly, though not too professionally, in Christian music ministry. I knew from information that I had been given, that the removal of my lymph glands would put me at significant risk of lymph oedema, a swelling of the arm on the involved side due to the interruption of the lymph drainage, caused by surgery. One fifth of all women having such surgery experience this problem to a significant degree. Would I still be able to play? The answer was a resounding ‘yes’, but I was told that it might be necessary for me to wear an elastic sleeve to keep the swelling down.

Also, in common with all post-operative patients, I would be required to take Tamoxifen, a drug which lowers oestrogen levels. Breast tumours are often oestrogen or progestogen dependent, and our bodies make these hormones which feed our tumours. Tamoxifen helps to prevent that, but the thought of taking it frightened me because my mother had had to take it and she had attributed the loss of her singing voice to the action of this drug. I loved to sing. Would I be able to? Yes, but my range might change. Great!

I left the interview somewhat shell-shocked, but the nurse thoughtfully provided me with a telephone number so that, when I had had time to think, I could contact her at need with any questions. I have lost count of the number of times I dialled that number, yet I always found a helpful and sympathetic ear on the other end of the line.

For best part of a week, I worked as much as I felt able. The headmaster of the school where I teach was, throughout my sickness, exemplary in his support and the level of empathy he strove to achieve. I attended a pre-admission clinic on the Tuesday of the following week at the outpatients’ department. On this day, I was counselled about what to expect from the surgery, what I would need in hospital, what the likely follow-up might be and so on. Blood tests were taken and I had yet another x-ray (yet another discussion, yet another lead apron), this time a general chest x-ray, in order to determine my fitness to undergo surgery. Once all the necessary information had been taken, the tests done and the counselling completed, we headed for home. It was about two in the afternoon. I would be admitted to hospital at about ten the next morning.

The hospital was genuinely welcoming. I was to have a bed in a four-bed side ward and I had no need to undress until the doctors needed to see me. My husband was encouraged to be with me as much as he could and was made very welcome in his own right. I was allowed visitors from two until eight, but I discovered that, if I needed company at other times, staff members were very flexible, understanding and accommodating. Obviously, it would not have been reasonable had my visitors disturbed other patients. Mutual consideration and respect are key issues.

Once I had been duly processed, I was marked up for the next morning’s surgery with an indelible black marker pen; an asterisk on my left hand in order to ensure the correct side of me was being tackled, and a great arrow on my chest, pointing to the left breast. I had my hospital arm and leg bands for identification, and additional ones in red, giving information about my drug allergies. I met other, cheerful women whose stories were the same as, or similar to, my own. In a place such as this, the barriers come down. Lives outside are on hold and thrown here together, we forged a special bond. We ate together in a communal dining room, and retired early and chattily to bed. Most of us were, of course, breast patients as this was a specialist breast unit; however any bed space not required for breast patients held general surgical overspill. I slept well, and had opted to be woken in the night for an early breakfast of tea and toast. I felt it would help guard against sickness after the general anaesthetic.

I was taken to theatre in good spirits. I felt very confident in the abilities of my surgeon, and he was very much in evidence and very cheerful. The anaesthetist’s assistant was a law student, working his holidays and hoping to specialise in medical litigation at the close of his studies. He was a striking young man with a cheeky and flirtatious manner. He even jocularly propositioned me! I had been accompanied to theatre by a student nurse who had asked permission to be present to witness my operation, and she was now wearing ‘scrubs’. As they went gently about the process of anaesthetising me, I remember suggesting to her that she should remind her anaesthetist colleague to take care of his real self as well as the charming ‘lady killing’ persona that he, in his youth and confidence, was presenting to the world! I doubt if he took me seriously. At any rate I was grateful for his easy and relaxed manner, if a little concerned for his spiritual well-being!

Up to that point, preparation for theatre had been something of a stripping exercise. I was accustomed to wearing make-up, which of course is not allowed. I always wore certain jewellery, which was, in its way, my trade-mark. All of this had to go and it felt like losing my identity… I took off a treble clef on a chain, symbol of the Christian music ministry; a cross, the emblem of my faith; a garnet ring which was a gift from my husband; a wish-bone ring bought for me by my children; a Claddagh ring which was a gift from my closest friends; a ‘mizpah’ ring inherited from my father, and a signet ring handed on to me by my mother one birthday when I was still quite young. There was also my wedding ring, of course. This I was allowed to keep once it had been taped.

It felt as if these things helped to define me and with them about my person, I was somehow ‘safe’. These things showed who I was, what I did, what I stood for…and only my wedding ring could go with me to theatre; my only physical treasure: ‘Where your treasure is, there will your heart be also’. In addition, my daughter has always told me that, as far as she can see, the only redeeming factor in what she considers to be my appalling taste in summer sandals is the fact that I wear good polish on my fairly presentable toe-nails. Even that had to go. I was allowed to keep my briefs, but attired in a theatre gown and white socks to prevent thrombosis, I felt unattractive and vulnerable. Now I was stripped down to the ‘me’ which only I and God knew. It was definitely a ‘Here we go, Lord,’ moment… Him and me…

The surgery went very well and the surgeon was kind enough to come and see me afterwards to say so. He was confident that, having made an extra wide excision, the likelihood was that he had indeed ‘got it all’, though of course only the histology report, due in two weeks’ time, could confirm that. I was returned to the ward. However, I had woken from