image

Connecting
with
Cancer

Published by

An Imprint of Melrose Press Limited

St Thomas Place, Ely

Cambridgeshire

CB7 4GG, UK

www.melrosebooks.co.uk

FIRST EDITION

Copyright © Cancer Connections Ltd 2017

The editor, illustrator and contributors assert their moral rights to be identified as the owners of this work

Cover designed by Robert Olley and Melrose Books

ISBN978-1-912026-35-7 (paperback)

             978-1-912026-38-8 (printed paper case)

epub   978-1-912026-36-4

mobi   978-1-912026-37-1

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publishers.

This book is sold subject to the condition that it shall not, by way of trade or otherwise, be lent, re-sold, hired out or otherwise circulated without the publisher’s prior consent in any form of binding or cover other than that in which it is published and without a similar condition including this condition being imposed on the subsequent purchaser.

Connecting
with
Cancer

Living with and beyond cancer

R R Hall
with illustrations by Robert Olley

Contents

Introduction

1.Thank you

2.The bookshop

3.It’s not good news

4.Is it a real cancer?

5.Mastectomy

6.Thumbs up

7.Sometimes it’s in the genes

8.Mammy’s poorly boobie

9.Win Win!

10.Friends, a diary and follow-up

11.Chemotherapy

12.Cancer was the most positive thing that happened to me

13.Moles … and more moles

14.A change of lifestyle was needed

15.Don’t ask the lads at work

16.Family matters

17.I took a year out of my life to save my life

18.A mother’s story

19.I think it was meant to be

20.What shall we tell the kids?

21.Surgery was not for me

22.I was lucky

23.We talk together much more now

24.It seemed so easy

25.Chemo and cream cakes

26.Decisions, decisions

27.Self-help in the kitchen

28.Give my best to Doctor Roberts

29.I am privileged to be here

30.Remission is a funny word

31.Things started looking up

32.Work was out of the question

33.What shall I tell the Missus?

34.Just the two of us

35.Help is at hand

36.The Professor

37.Feelings

38.Fear

39.Counselling

40.Money

41.How long do you think I have?

42.One happy fella

43.Joyce did not want to know

44.I’ll go ahead and put the kettle on

45.We didn’t want any fuss

46.Left in the world without the love of my life

47.Saying goodbye

48.Remembering Nanna

49.Faith, Hope and Love

50.Wedding bells

51.Doctors don’t do raw emotion

52.A chemotherapy diary

53.Three mistakes that should not be repeated

54.Giving something back

55.The tree

56.Postscript: Cancer Connections, a remarkable story

Index

Acknowledgements

About the Artist

About the Editor

Introduction

HEARING THE DOCTOR SAY, ‘I’m sorry, it’s not good news: it’s cancer’ is almost always devastating and for those who hear it life is seldom the same again. Although many improvements in the treatment of cancer have been achieved, and the causes of some cancers are better understood, the ‘Big C’ can still seem a formidable and lonely mountain to climb. Very often a cancer diagnosis means dealing with uncertainty, anger, fear, grief, loss of control, faltering self-confidence – so many emotions and practical problems that people who have not had cancer never understand.

What is it like to discover you have a possibly fatal disease? What does it feel like to go home from hospital to tell the family? What happens if I need major surgery, weeks of radiotherapy and months of chemotherapy and am unable to work for months on end? How will I manage if I lose my job and struggle financially – all because of cancer? Do the doctors realise how many sleepless nights I spend waiting for the result of the biopsy? Does anyone care how hard it is to share my fear with people whom I love most? What should we do when our child is in trouble at school because they think I’m dying? How can I help my loved ones to cope if I am no longer here? Questions such as these are discussed only rarely in the surgeon’s office or the oncology clinic.

As a surgeon, my job had been to remove cancer as skilfully as possible and then make sure, with the help of nurses and other medical staff, that its owner made a safe and speedy recovery. I saw them afterwards to oversee and encourage their progress, but what happened in their personal life, how they coped with the consequences of their cancer, in their family, at work and in their social life, was not usually my main concern; nor was it the focus for most of my colleagues.

When asked what they would appreciate most, a group of people who had experienced cancer replied, “Someone to talk to who understands.” Or, as one man explained, “When I heard I had cancer, I needed to talk to somebody. Not a busy doctor with only minutes to spare. Not a nurse who could have no idea what it is like to be a man who has just been told he has cancer. I needed to talk with someone who had experienced what all this would mean to me and my family. To me, as a member of the human race, there is an inherent need to communicate, to express my feelings and fears.”

Bearing this in mind, and remembering a chance encounter with a distressed stranger in a bookshop, and the example shown by the professor of surgery late one night when I was a newly qualified doctor, I discussed these questions with friends. The outcome was an experiment: we started a local cancer support charity run by volunteers who did understand what cancer was like and who could answer the questions because they had experienced cancer themselves. We called it Cancer Connections. Over the past ten years, more than four thousand people affected by cancer have walked through the door and been encouraged to talk. As our volunteers have listened we have learned how different the cancer experience can be. Also, that there are common threads and by sharing their experiences visitors have learned that they are not alone and have been helped to move on. Talking and sharing has been therapeutic. The purpose of this book, therefore, is to share these experiences with an even wider audience in the hope that others may benefit too.

Seeking help from a cancer support group is by no means the only way to ‘cope’ with cancer. Many, many people do so on their own or find the support they need from family, close friends, colleagues, their GP or hospital staff. Thus, to achieve our objective, thirty-four contributors from varying backgrounds and different walks of life, some from Cancer Connections and some from elsewhere, have recorded their experience of cancer and the recordings have then been transcribed for publication. Two other contributors have written their own personal account; seventeen different types of cancer have been included.

Here, in the pages that follow, there is not an on-going single narrative nor any ‘professional’ commentary or analysis, just snippets of conversation, anecdotes and personal stories as told by each individual contributor about her or his experience of cancer. In this way we hope you will discover at first-hand what cancer feels like. If you wish you can also learn how it is possible to manage the upheaval that follows a cancer diagnosis, how others have overcome the problems that it causes, and how they have been enabled to make the most of life after cancer.

As a reader you may wish to start, not at the beginning, but with a particular type of cancer or an aspect of the cancer experience that concerns you most. To help you do so, we have included an index which you will find on page 167.

Thank you

Connecting with Cancer has been possible only with the help of the contributors who have been willing to share their very personal experience. To hear these stories has often been moving, sometimes distressing and, on occasions, troubling. But it has also been educational, remarkable, heart-warming and always uplifting. Helping to write them has been a privilege.

My very special thanks to:

Annabel – Ashley Bruce – Annie Campion – Lynne Croft – Jackie Dixon

Audrey Donnelly – Elizabeth – Patricia Fawcett – Diane Ferguson

Michelle Grimmer – Derek Gouldsbra – Joyce Groombridge

Rachel Groombridge – Lee Hall – Linda Hind – Amy Horton – Jason Kaid

Paul Kan – Louise – Noreen McKiernan – Jane Maher – George Oxberry

Bob Olley – John Pattison – Sheila Rooney – Tony Sherwin – Debra Slesser

Philip Smith – Stan Stallard – Anne Stutchbury – Sarah Ward – Roy Wilburn

Paul Wilson – Jackie Younger – Roger Younger

Eliza, Emily & Olivia

The bookshop

IT WAS IN THE DAYS BEFORE on-line shopping and next day delivery, so a trip to the bookshop was needed. Searching the shelves in a rather gloomy corner of the medical section, I became aware that there was a woman standing a few feet away, crying. I had encountered a few unusual situations in life before, but this was a new one. She was middle aged, a total stranger, appeared to be alone and was clearly distressed, weeping uncontrollably. Concentrating on finding my own book I tried to ignore her, but it was no good; there were no shop assistants in sight, no other customers. I would have to do something.

“Excuse me. I do not wish to intrude, but there seems to be a problem. Can I help in any way?” She looked startled but fished a tissue from her bag and dried her eyes.

“I’m looking for something about cancer,” she replied. “I’ve just come from the hospital. The doctor told me I’ve got breast cancer. I can’t believe it, I never dreamed the lump would be that. Apparently I’ll have to have an operation and maybe some other treatment – God knows what, I’ve no idea. I don’t understand. Am I going to die? They probably told me some more, but I didn’t hear a word after that one. I need to know what’s going to happen to me – so I came here.

“Where else could I go?”

It’s not good news

SURGEON:YOU’VE GOT CANCER but we can keep you going for a few months or maybe a few years.”

Me: “Okay, which is it: months or years?”

Surgeon: No answer.

Me: “Will it kill me?”

Surgeon: “Yes, it probably will.”

That was when my head went into overdrive and I lost the plot. I was angry with myself for not going to the doctor earlier and I was angry with the way my wife and I had been told the diagnosis. We needed to get some order back into life, work out what was important and what was not.

YOU NEVER FORGET the day they tell you. The surgeon was not a man to beat about the bush: “I’ve got to tell you you’ve got stomach cancer.” Right. Well. You go numb. Nothing. Everything. The world seemed to stop. It was surreal.

WHEN THE CAMERA up my backside revealed all, the fellow who was doing it said he’d found something and he was ninety percent sure it was cancer. Thanks, just what I wanted to know!

THE SURGEON WAS EXPLAINING things, drawing diagrams, saying what they could do, telling me it was good because it was unusual to diagnose it early like me – but he had just told me I had cancer! It’s that word, it’s still frightening.

SITTING IN THE CLINIC and hearing that it was cancer, my husband couldn’t speak and was more upset than me. Going home was a blur. When we got there we sat on the sofa looking at the garden and cried, and cried. The phone kept ringing, but we didn’t answer; we couldn’t face speaking to anybody.

MY OVERRIDING THOUGHT was not to worry about the prognosis, or being frightened that I might die, but to remember the upheaval we had when my brother died. I needed to get organised. When I was asked how I felt, all I could say was that we would need to get the house cleared!

WHEN WE WERE FIRST TOLD it was terminal, we went for a walk by the hospital and my husband said, “I’m sorry you have backed a loser. I’m sorry I’ve let you down.” I didn’t feel that way at all and told him so; we both knew there was not going to be a happy ending, but we needed to be able to hope. That worked for us and kept us together.

WHEN THE CONSULTANT LOOKED a bit solemn and said, “Oh, are you on your own?” I went ‘Oh, Oh!’ and knew something was up. I asked him if it was cancer and he said ‘Yes’. Apparently it was a rather rare cancer and they had found lots of nodules in lots of places. They showed me all the scans and pictures of the tumours taken at the laparoscopy, and I found that very helpful. The worst bit is knowing that you’ve got to tell the family.

THE BIOPSY was on the Friday and I had to go for the results the following Tuesday, but I went straight into work and cleared my desk: I knew I wouldn’t be back for a while. Although I was expecting it, when the surgeon said it was cancer it was still a shock. I had a five-year-old daughter at school and my first question was, “Am I going to die?”

Fortunately the nurse replied, “Yes you are, but we can’t tell you when or what of.”

It was a strange thing to say and I didn’t take it in at the time, but it was reassuring and has stayed with me for the past twelve years.

AFTER THE MAMMOGRAM and the needle I left the clinic and went back to work, but within a couple of hours I was back for the result. It was cancer. A few minutes later I was driving out of the hospital car park. When I had driven round the roundabout three times, it dawned on me that I could not remember the way home. My only thoughts were ‘Get yourself pulled together. What are you going to tell your six children?’

I WENT TO THE CLINIC on my own, not expecting serious news. The mole was not just a mole, it was ‘malignant’ and I didn’t quite know what ‘malignant’ meant. The dermatologist said that I should have an operation to remove more skin and go further to remove the ‘cells’ or it would spread. Now, when someone says it could ‘spread’ the alarm bells started ringing.

THE CONSULTANT’S OPINION was definite. “I am afraid you have prostate cancer. It has broken out of the organ. It is an aggressive cancer with a high Gleason score.” Just the comments I was dreading to hear. I had done a bit of research on the internet and my prognosis, I felt, was not good.

“How do you feel?”

How do I feel? What a question!

Numb? Devastated? The bombshell had dropped!

I WAS IN THE OFFICE when the surgeon telephoned. When he said nothing but that he wanted to see me I guessed, and could not stay in the office. I went outside and bawled my eyes out. When I reached home, I went for a walk in the park with my wife. We sat by the pond and cuddled, and told each other we’d face it together although we really had no idea what lay ahead. Later, when we saw the surgeon and he confirmed it was cancer, it rocked me to the core. Everything rushed through my mind like a sort of madness. It was crazy and for weeks I lived in a big blur; it felt surreal because things were happening around me, but I didn’t feel I was there. Fortunately, these feelings changed: I got the ‘Let’s beat this thing!’ mindset and things picked up.

I WAS FASCINATED when they looked inside because on the video screen it looked just like a mouldy cauliflower with bits floating around; I was very interested in what I saw, but not really worried. I understood what was being said, I understood what I was being shown and I understood what might happen, but it failed to penetrate to cause me any fear. I did not feel emotional about it and decided that, well, this is where I am; it wasn’t that I didn’t care what might happen, but felt that whatever that might be I would do the best I could. I waited to hear it but ‘cancer’ was never actually mentioned. The consultant agreed that the cauliflower we had seen on the screen was ‘it’ and the bits floating round were ‘debris’. The nurse was busy elsewhere and I could not wait indefinitely to see her and the young doctor was too flummoxed to say ‘yes’ when I asked him if I had cancer. However, I knew, and my immediate thoughts were to sort out my own needs.

IT WAS THE Head and Neck surgeon who told me. It was cancer of my voice box, the larynx. I realised I would need an operation, but I never thought I would end up with a hole in my neck. The consultant gave me a pamphlet and a CD to look at so that I could see what would be involved. When I looked at the information at home, my reaction was to go into overdrive mode. I had a phobia of hospitals, it looked a big operation and although I couldn’t tell exactly what would happen, it said I would not be able to talk again. I decided this was not going to happen to me.

WHEN THE X-RAY SHOWED A SHADOW, I went straight to my GP who I’ve known for years: I was shattered, but I needed to know. She said, “Best case scenario, you’ll have a few treatments and it will be gone, worst case it’s recurrent melanoma and that’s it.” She knew what I was like, she was there when my sister passed away; she knew I would want the truth. When it was confirmed melanoma she telephoned me to say that it might not be so bad because there were some new treatments available and I would see an oncologist. However, I was given a DS 1500 form for a welfare benefits application so I knew my expected prognosis could be less than six months. The doctors might slow it down, but they couldn’t cure it. I was forty-three with a wife, two children, three grandchildren and an early army pension.

IT’S A LONG TIME AGO and I was seventeen at the time. I was told nothing. Later I learned that my parents were told I probably had a malignancy. My mum told my best friend, “They think John’s got cancer, but we don’t want him to know,” and after that, all my friends stopped coming to see me. Sent to the radiotherapy ward, I was greeted by a doctor who said, “This is the young man with Hodgkin lymphoma,” but that meant nothing to me. However, when I bought a paper to pass the hospital hours away I saw the headline ‘Crossroads star hides secret from millions of fans’. Reading further, it explained that the star had Hodgkin lymphoma, a lymphatic cancer. That was what I had, wasn’t it? That’s how I discovered I had cancer. I asked one of the nurses but she would not tell me and it was only when I confronted my mum that I was told the truth: there was only a fifty-fifty chance of cure.

WE KNEW THE NEWS was not good when we saw the Macmillan nurse sitting with the consultant when we went in; he said it was inoperable, but we didn’t take it in. Joyce had lung cancer and really didn’t want to know. I will always remember because the letter from the hospital was written professional to professional, stating the facts: very harsh, and we hadn’t asked for a copy as far as I can remember. It said that Joyce had a terminal illness, that treatment would not be beneficial and they would provide just palliative care. Joyce read the letter, threw it down and burst into tears. When it’s in black and white you can’t escape the reality. That is my one regret: if I could have stopped the letter from the hospital, I would.

WHEN I RECEIVED THE RECALL LETTER two days after the mammogram, I knew it was cancer, because when I prayed, God did not tell me that everything would be all right. Instead, when I read the Bible I found this: ‘Do not fear for I am with you. Do not be dismayed, I am your God. I will strengthen you and help you’. I wrote that on a small piece of paper and kept it in my hand when I went to the hospital – and I carry it with me now.

WHEN I HEARD that I had breast cancer the second time, I was pretty pole-axed and couldn’t help feeling it was someone else’s turn. It was fifteen years after the first cancer that I found a lump in the other breast. It was cancer, again. The thought of doing the radiotherapy and chemo again was not so scary, because I knew what it would involve: it would be pretty grim, but I would just get on and deal with it. I had got through it before and I would do the same again.

Is it a real cancer?

Sheila had worked as a nurse for many years, but could not believe that the tumour in her breast was a real cancer: that was not supposed to happen to her.

WHEN I GOT THE LETTER asking me to go back after the mammogram, I thought they had just lost the x-ray. But they hadn’t. I had the scan and the biopsy and a cup of coffee. Two hours later the doctor confirmed it was cancer. Well, you really could have knocked me over with a feather; I’m still embarrassed about it. When I saw the surgeon at the next appointment, I said to him, “Can I ask you something? Is it a real cancer?” The previous mammograms had all been normal and I had no expectation for this one to be any different; it was going to be totally normal. There was a reason why I was so sure. I had cared for my sister-in-law when she had breast cancer and she had a particularly difficult time. I also had a close friend who had breast cancer at the same time, and she died within a few weeks of my sister-in-law. It was all too much for me to think about. I was absolutely determined that I would never get breast cancer, ever. There was no way that could happen to me! Looking back, I can see that I was so sure because I was terrified. I was a nurse, but I could not get my head round the idea that I had cancer. I said to the friend who was with me, “This won’t change my life, it’s not a proper cancer, it won’t be a problem.” That was the state of mind I created for myself which was a shame, because things did not go according to my plan.

A CT scan and more biopsies found that the cancer was in a lymph node and there was cancer somewhere else in the breast as well. Although they were very nice about it and explained everything, I began to wonder if there might be even more cancer that had been missed. I wanted a mastectomy. Before breast cancer, I had worked as a nurse in the north-east of England, London, Switzerland, Australia and New Zealand including ten years in oncology, but that had been many years before; by the time I was diagnosed, my oncology knowledge was fifteen years out of date.

When I said I wanted a mastectomy, not a lumpectomy, I had the feeling that I was being a nuisance. As a result, I became confused and that was the start of my psychological distress. I thought I knew how to cope with cancer, but I didn’t. As a healthcare professional, you think you know what it’s going to be like, but when it actually happens to you it’s very different! I was feeling really fit and was planning to go back to work, but that would have to wait. I remember very little of the first few weeks back at home except that housework did not get done and I thought my house would never be clean again. It did get clean, eventually, but in the meantime, life was about other priorities.

After surgery, chemotherapy would be next. However, by the time the chemotherapy was due to start I was angry, blazingly angry! I wasn’t supposed to have chemotherapy because it wasn’t a real cancer. This wasn’t supposed to be happening to me and I was not sure I would have any. Fortunately, by the end, with the help of a skilled counsellor, my anger was beaten into submission and I completed the recommended treatment.

I trusted NHS colleagues who would know what I needed, but I found that things had changed since I retired. Nowadays, it seems, everything is organised according to ‘pathways’. You start on a pathway and continue on the pathway, but if your care needs don’t fit that pathway, you don’t get that care.

Some people use the word ‘journey’ to describe what happens – they call it ‘the patient journey’, but I hate that: setting off on a journey suggests that you have some choice about where you go but, with cancer, there is no choice. You are a very reluctant traveller, the hotels are awful, the food is dreadful and you’re travel sick!

Mastectomy

IT HAD TO BE A MASTECTOMY; I didn’t have any choice. The good news was that the hospital was doing breast reconstruction surgery and I was able to have the mastectomy, reconstruction and a reduction on the other side to balance things up, all at the same time. The other good part was that I had been very big since early teen age and had even asked to have breast reduction surgery when I was only fourteen which, of course, was refused. I didn’t like my breasts and was very self-conscious, so for me, actually having breast cancer was a blessing because I was able to get rid of what I had to put up with for all those years.

WHAT DID BOTHER ME was the scar. Although I was a nurse, I had never seen anyone who had had a mastectomy and I needed to know what I would look like afterwards; I wanted to see photographs so that I could prepare myself. I made a special appointment to see the Breast Nurse. She was very kind and showed me the flip-chart pictures she had. They showed a small scar about five or six inches long, much better than I had expected. I was quite surprised, but if that was how it would be there was no reason to worry. The reality, of course, was something different. When the dressings came off, I had such a shock. The incision went right round the side because a thorough lymph node removal had been necessary. Nobody had warned me about that.

A LOT OF PEOPLE THINK having the other breast off was drastic, but I am so glad that I did it. Going back every year for a mammogram would be a constant reminder. I was told it was only a one percent risk of getting cancer in the other breast, but I didn’t want even that. Mastectomy took away that anxiety. I knew it could come back somewhere else, but this was something I could do. For me, psychologically, it was the right decision. It was not just for me, either. I did not want the worry for my little girl.

WHEN WE FOUND that I had the faulty breast cancer gene, it was suggested that I should have a second mastectomy with immediate double reconstruction. By this time, I was fed up with shopping for clothes wearing a prosthesis: it’s horrible and I had already wondered about reconstruction. We talked about it, my husband was for it, and with the high chance of the cancer coming back there really wasn’t any choice: another mastectomy and reconstruction it would have to be. If there hadn’t been the offer of reconstruction though, it would not have been such an easy decision. I really do not know what I would have done. When you lose one boob you can match up, but if there is nothing at all, it takes away the feeling of being a woman. Fortunately, I didn’t have to think about that.

Thumbs up

THE ARTIST WAS WORKING on a painting in the studio at the back of his gallery in the centre of town. His latest work hung on the walls of the gallery and, as always, the door was open to passing customers. The morning had been quiet so he had been able to work undisturbed, but nearing lunchtime, a youngish lady walked in. Looking up from his easel, he greeted her with a cheery ‘Good morning’, but she did not reply. Instead, saying nothing, she took her own tour of the gallery looking at each work of art. Having seen all there was to be seen she started again, standing a long time before each picture. “I could see that she was looking at the paintings but she was not taking them in; her mind was somewhere else. For some reason, I could sense that there was something not quite right, so I asked her if she was all right.”

As she turned round, he could see her eyes were full of tears. Slowly she explained that she had had a mastectomy for breast cancer, but her husband could not accept it and they were having problems. “I had no idea what to say. She was a total stranger. I knew almost nothing about breast cancer and even less about mastectomy, so I said nothing. There was nothing I could say to help her. However, I must have looked sympathetic because she accepted my offer of a cup of coffee, settled down and stayed for nearly an hour, and I just listened as she talked.

“It was a year later and I called in to one of the pubs along the road for a pint. There was a snug at the front with a bar and then the main room beyond. Standing at the bar, I saw a lady in the room with her husband, who had his back to me, talking and drinking with their friends. I recognised her immediately: she was my surprise visitor from the year before. I had wondered sometimes how she had fared; had her problem been solved, had her cancer been cured? I realised there was no reason to think I would ever know. Now, here she was. She recognised me, too, and she caught my gaze. Smiling, and with what must have been a quizzical face, I raised a tentative thumb above my glass. With an even bigger smile and confidence in her eyes she looked straight back, raised her thumb in reply, and said silently, ‘Thank you.’”

Sometimes it’s in the genes

THE PROFESSOR WE SAW explained that finding a faulty gene was like looking for a spelling mistake in a book in the British Library whose author and title you didn’t know! That was eighteen years ago and they know a lot more about genetics now.

I have four sisters. My older sister was diagnosed with breast cancer when she was forty-five and because our mum’s mother had breast cancer and her sister had ovarian cancer, it was suggested that we should all be tested to look for a possible genetic link. For that to be done we were referred to Southampton University Hospital and we decided we would all go together for the day. Despite the obvious difficulties, we all had counselling and decided we would have the tests. The result was that our mum has the BRCA 2 gene, but at eighty-five, she is fit and well. Her younger sister, who lives in Australia, was tested and was found to have the same gene mutation and when she had mammograms, they found a small cancer and she has had a lumpectomy. My older sister who had the cancer was positive but her twin sister was negative, and our other sister was negative. However, at the age of forty-six, I was told that I was positive for the BRCA 2 gene.