My Cancer Has Many Faces

My Cancer Has Many Faces

Alero Dabor

© 2014 Alero Dabor. All rights reserved.

Cover art by fiverr.com/capooter

Edited by Therese Arkenberg

ISBN: 978-1-326-03300-2

Thank you for purchasing this book. This book is the copyrighted property of the author and may not be reproduced or distributed for any commercial use. Limited non-commercial reproduction and sharing, including the use of quotes and excerpts in reviews, is welcomed. Your support of this author is greatly appreciated!

TABLE OF CONTENTS

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My cancer journey is based on the experience of a single parent. The fact that I happened to be single, and to have a family, was not in the least irrelevant when I received my cancer diagnosis.

Yet cancer does not discriminate. It does not care who you are rich, poor, married, single, divorced, happy sad, young, old, fat or thin. It really does not care about your feelings.

Cancer has many faces. It is not only a physical disease, but also a disease that gets to you financially, emotionally and spiritually. It can be a lonely disease.

Cancer takes a life of its own and has a life of its own

Because cancer has many faces, it is also a disease that enables you to become empowered, overcome fear, live life to the fullest, reinvent yourself and thank Him for your life.

You can take control of your cancer. This is something cancer teaches you if you decide to take ownership of your journey. Embrace your power to choose, love it and work with it in your body, in your mind and in your soul.

Cancer could be the best thing that may have happened to you or it could be the worst thing that ever happened to you.

That decision will always be yours, as you learn to live and love your experiences, even through cancer.

This book grew from a set of journal entries I wrote over the course of my cancer, from July 2006 when I first had a hint that all was not well, through the discovery of what I then referred to as ‘my ailment,’ through treatment until the spring of 2007, when I began to redefine myself from cancer sufferer to cancer survivor. I hope that reading it sheds light on my experience and offers my perspective for you, dear reader, to consider. We may not agree on all things, and that is all right. As I have thought before, if my story reaches just one person, that will be enough.

This book is dedicated:

To my dear son Ayulie, for without you, I would not be alive today to write to tell the story of a single mother who became a cancer sufferer to become a survivor. For that I thank you.

To my son Jnr. For one so young, you showed so much maturity as a caregiver.

To my niece, Demi, who is simply the best. For one so young, you have much wisdom.

To my sister, Thelma, for all your help, laughter and understanding.

To my mother.

To my brothers.

To Auntie Roli and Uncle Godfrey, for all the trips to the hospital.

To all my friends and family for being there for me.

This book is also for any mother, sister, brother, friend, spouse, partner, or colleague who has had a cancer diagnosis. It is also a book for those caring for anyone with cancer.

The book is for anyone and everyone.

It tells the story of a single mother who, several years ago, was diagnosed with cancer. You will feel her pain, know her lamentations, her tears, her confusion and her anguish. What is more important, you will be able to feel her strength, her courage, her resilience and her determination to get through this period. You will know her joy, her laughter and her humour.

The book will tell you of how she went from being a cancer sufferer to becoming a cancer survivor. How she has chosen to reinvent herself with new dreams, goals and aspirations while she continues to live with cancer.

She is a real person: a mother, a sister, a friend a daughter and a colleague.

The truth is that if you survive cancer, there is life after it, despite the challenges you face along the way.

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Foreword

‘Cancer can be a lonely disease,’ Alero writes in the opening paragraphs of her book. The story that unfolds over subsequent pages lays bare cancer’s invasion of every part of her life: the physical, financial, emotional and spiritual consequences of her diagnosis and of the treatment she received–and also, somewhat controversially, refused. It is a heroic tale, told with Alero’s characteristic humour and humility.

Alero knows that everybody’s cancer story is different, and that each individual will have their own way of managing it, adjusting to it, dealing with it or even ignoring it, as the case may be. She makes no assumptions that others will approach their illness in a similar way to her, but she presents some universal truths that will resonate with anyone who has had personal experience of cancer: the contradictory emotions, the unpredictable moods, the anguish of making big decisions in the midst of uncertainty (‘Do I take this wonderful job that has come at exactly the wrong time, or don’t I?’). She vividly describes the joy of things often taken for granted: a good night’s sleep, the kindness of friends, the unstinting support of family, the renewed enjoyment of the beauty of a familiar city, walks in the park.

An encounter with cancer does not end at the point that the doctors say, ‘You have recovered; we don’t need to see you again.’ Alero continues her story through the hidden difficulties of making a new life after cancer: ‘Being diagnosed with cancer and going through treatment was actually the easy part; the hardest part for me is survivorship.’ Coping with cancer’s often invisible after-effects can last years beyond treatment, including managing the expectations of others that having been given the ‘all clear’ one is back to full strength, and one’s own expectations of being able to carry on with life as it was before. Alero shows how ‘cancer changes one without our realizing it,’ and that it is not a straightforward matter to make sense of a different body, changed priorities, and a new-and-yet-the-same self.

In the years following her illness, Alero has used the knowledge she has gained and her talent for building relationships with people to become a ‘voice’ for others going through the same ordeal, contributing a survivor’s perspective on service and policy developments. And it was in this role that I met Alero for the first time. She was one of about fifteen people–mainly cancer health care professionals, researchers, service managers and policy makers–meeting to decide on an evaluation strategy for a project we were all involved with, designed to support people with cancer to return to work. We were assembled around a rather soulless boardroom table with our corrugated cardboard cups of coffee, discussing the relative merits of various outcome measures and statistical approaches. Alero sat listening intently and as we got no closer to reaching a consensus, she spoke. ‘I think,’ she said, ‘that you have all lost sight of what really matters to the people you are trying to help–people with cancer. The thing that mattered most to me was that I felt listened to and respected. That I was treated like a human being who could make her own decisions, even when–in fact, especially when–those decisions were not the ones that health professionals thought were the right ones. I wanted to know that I had the right information and support to make the best possible choices for my life and my family.’

My work involves finding ways to support people living with and beyond cancer to remain in or return to employment, where that is their wish. It’s an area where there are lots of different stakeholders: NHS cancer services, the Department of Work and Pensions, employers, rehabilitation service providers, policy organisations, charitable funders–each with their own idea of what constitutes a good outcome. The NHS, for example, wants to save money on long-term follow up, whereas the DWP is concerned with keeping people in work and off benefits. Rehabilitation services, on the other hand, want to ensure that they secure the resources they need to meet people’s work-related needs. In the clamour, it’s easy for the patient’s voice to be drowned out. Alero works hard to make sure this doesn’t happen.

Over the past four years, Alero’s unswerving support for me and for the work that I do has been invaluable. I hold on to a remark that she made a while ago, over lunch at MacDonald’s in London’s Victoria Station, at a time when bureaucratic and administrative complications with a study I was working on felt overwhelming: ‘Your research matters, Gail. It will change people’s lives.’ She makes it impossible to give up.

Gail Eva

London, October 2014

PHASE ONE: DIAGNOSIS

28 July, 2006

It all began on a classically beautiful summer’s day. The sun was shining, the sky was blue, the birds were singing. Life was looking good and I was feeling much better. I had been extremely fatigued the past several months. Every morning, Monday–Friday, I had a normal routine: wake up at 5:00 a.m., get ready for work, ensure Ayulie got up, had breakfast, and was ready for school. Once he was off, I would drive to work. This took me between 45 minutes and an hour, subject to traffic. While I currently worked as a Leasehold Services Manager, I had always dreamt of becoming a practicing Property Solicitor. After working nine to five, on Tuesday, Wednesday, and Thursday I would go the BPP College of Law at Holborn straight from the office. College went from 6–9 p.m., so that I would get home just before midnight on the three evenings I attended.

It was a lifestyle I had become accustomed to. I had obtained my Law degrees—that is, my LLB and my Masters of Law—while working full time and studying part-time, with absolutely no problems whatsoever. To all intents and purposes, the Legal Practice Course I now embarked on was just another class.

However, during one of my lectures in March 2006 I realized my concentration was shattered. I wasn’t taking anything in. The course that seemed relatively straightforward to most of the students felt beyond my understanding. I still vividly remember how I struggled to get to grips with Intellectual Property and Commerce.

In addition to feeling tired during my lectures, even on days I did not go to college I went right to bed when I got home. Skipping dinner, I would sleep from 7:00 p.m. until I woke the next morning at 5:00 a.m.

During weekends, I would sleep literally all day. In hindsight, this fatigue I experienced was not normal. There was something indeed odd about how I was constantly tired, with no relief. Exhaustion never went away, no matter how long I slept. Yet at the time I ignored it, and put my tiredness down to a very busy schedule.

When the summer holiday came, and I had no college to go to after work, I could come home, sleep and spend time with Ayulie. I just began to feel better. I was more relaxed, as all I had to do was go to work. Yet the truth is, I was not well at all.

It has always been a balancing act to spend quality time with my son while working full time and studying part time. During the summer holiday, I was able to take the day off. Having this day with my fourteen-year-old Ayulie and doing things with him was always something I cherished. Today was no exception. We woke up early and decided to go into central London, taking in the atmosphere. We went window shopping on Oxford Street, looking for nothing in particular.

We got home around 6:00 p.m. My son was being ever so helpful around the house. Ayulie is usually a lovely child, but has never particularly enjoyed doing his chores. Not many young people do. However, on this particular day he actually volunteered to do them. That got me wondering—This is not like him! Hmm, what’s up?

I asked if he wanted anything. Perhaps he was seeking a reward for offering to do some chores. At my question, Ayulie started crying. He told me that he had a dream that his maths teacher had called him out of the classroom to tell him I had been involved in car crash and had not survived.

He had tears pouring down his face. I told him not to cry, as it was only a dream. He could obviously see that I was whole and hearty and there was nothing to worry about.

The dream on its own might not amount to much, but what happened afterwards makes it stranger than fiction.

I went to my bedroom to change that evening and for no apparent reason, I decided to do a breast examination. To this day I do not know why I did the examination—perhaps it was because of my son’s dream, but why that pointed to my breasts I cannot guess. I could not remember the last time I did a breast examination. It was July, so there probably hadn’t been something on the television to raise cancer breast awareness like there is each October. However, this night I did it. And I felt a lump on the right side of my breast.

Hey! Whatever my reasons for doing the examination there was a lump, simple and plain as that. But I felt no real alarm, at least not yet.

I said nothing to Ayulie; there was nothing to say. He was young, and I didn’t want to bring the issue up with him, and I didn’t really know any more than he did what was going on. Cancer had never been mentioned in our household.

My son and I stayed up that night to about 10:00 p.m. watching television together. When we finally went to bed, I checked again. The lump was still there, but I decided there was nothing I could do about it. I finally drifted off to sleep.

Saturday, 29 July

This was another beautiful summer day. I woke up wondering what the lump was about. As I went about my morning routine, I checked and it was still there.

I decided to go my GP, who opened on Saturday mornings for a couple of hours for booked appointments and emergencies only. It was not a walk-in system on Saturday’s.

I told the receptionist that I would like to see the GP. She asked me what for, and I told her I had a lump on the right side of my breast.

She allowed me to see the GP.

Apparently this counted as an emergency.

Yet after examining me, my GP said it was a cyst and that I had nothing to worry about. I left the surgery and carried on with my daily activities.

But there was something I didn’t know at the time. Without me even suspecting, my GP wrote a letter to the Princess Royal in Orpington asking for me to be seen in the breast cancer clinic whenever possible.

Before that, I was not in the least bit worried or perturbed. I knew there was nothing wrong