Pilgrims of Mortality: A Patient’S Chronicle of the Journey Beyond Colorectal Cancer Detection

By Mallory J. McComish

This is a remarkable book written by an amazing patient with cancer. His journey has been hard and tortuous and is not yet over. His writing is clear, amusing, factually correct, well researched and inspirational. Its a very unusual logbook of a pilgrim who has travelled for a decade down the cancer road.

Bursting with information, this story will be helpful to all those with cancer, whatever its type. We live in an information rich world, where the internet and media provide 24 hour access to global knowledge. But sifting the relevant and accurate from the erroneous and subtly promotional is now a great challenge. Here, Mallory demonstrates how to do this very effectively.

During my career as an oncologist I have seen tremendous improvements in cancer care. Our outcomes are now so much better. But involving patients in their care has never been more important. This gives us great insight of one mans cancer journey and will be of great value to future patients and their families.

Professor Karol Sikora, Medical Director of Cancer Partners UK, Dean of the University of Buckingham Medical School and former Chief of the World Health Organization (WHO) Cancer Program

• Language: English
• Publisher: Archway Publishing
• Release date: Mar 23, 2017
• ISBN: 9781480817265

Mallory J. McComish

Mallory J. McComish was diagnosed with Stage IIIB rectal cancer in July 2004. He and his wife, Prudence, live on Turks and Caicos. They have one son.

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Copyright © 2017 Mallory J. McComish.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

This book is a work of non-fiction. Unless otherwise noted, the author and the publisher make no explicit guarantees as to the accuracy of the information contained in this book and in some cases, names of people and places have been altered to protect their privacy.

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Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

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ISBN: 978-1-4808-3050-9 (sc)

ISBN: 978-1-4808-3051-6 (hc)

ISBN: 978-1-4808-1726-5 (e)

Library of Congress Control Number: 2016910069

Archway Publishing rev. date: 03/06/2017

Contents

Introduction

Preface

Disclaimer

Chapter 1 Signs and Symptoms/Websites/The Digestive System

Chapter 2 Colonoscopy

Chapter 3 Diagnosis and Emotional Response

Chapter 4 Causal Factors

Chapter 5 Excision, Pain Management, and Postoperative Recovery/Colorectal Cancer Staging

Chapter 6 Adjuvant Chemoradiotherapy

Chapter 7 Convalescence

Chapter 8 Small Bowel Obstruction

Chapter 9 Managing a Colostomy or Ileostomy (If Applicable)

Chapter 10 Nurses

Chapter 11 Remission, Recurrence, and Radiotherapy

Chapter 12 Subsequent Chemotherapy and Biotherapy

Chapter 13 Living, with Cancer

Chapter 14 The Human Genome Project

Chapter 15 Time, Our Inexorable Companion

Chapter 16 Mortality

Chapter 17 Best Wishes

Glossary

AcknowledgmentsManuscript Review

My Medical Team

About the Author

This is a remarkable book written by an amazing patient with cancer. His journey has been hard and tortuous and is not yet over. His writing is clear, amusing, factually correct, well researched, and inspirational. It’s a very unusual logbook of a pilgrim who has traveled for a decade down the cancer road.

Bursting with information, this story will be helpful to all those with cancer, whatever its type. Involving patients in their care has never been more important. This gives us great insight of one man’s cancer journey and will be of great value to future patients and their families.

Over the next decade, I believe we are going to continue to make tremendous strides in the treatment of cancer. Local treatments with surgery or radiotherapy will dramatically improve with new technology. And new targeted drugs will deliver the hope of personalized medicine for those whose disease has spread. Cancer will become more prevalent throughout society as we all get older and live longer even with the disease but will also become more treatable, with more and more options. It will move from being a fatal to a chronic illness, like diabetes or hypertension. It will become even more essential for patients to understand what’s happening to them and how best to choose from the many options available.

We are all pilgrims on a journey whose end is unknown. But having a map and compass allows us to make the correct decisions as we travel. This book will be of great help in pointing the way forward. Good wishes to you on your travels.

Professor Karol Sikora, medical director of Cancer Partners UK, dean of the University of Buckingham Medical School, and former chief of the World Health Organization (WHO) Cancer Program

For a moment of night we have a glimpse of ourselves and of our world islanded in a stream of stars—pilgrims of mortality, voyaging between horizons across the eternal seas of space and time.

—Henry Beston

Dedicated to our brother-in-law, Dr. Wayne T. Kelly, Prudence’s sister, Jennifer Kelly, and their six children, Timothy, Alastair, Hamish, Harry, and twins Phoebe and Hannah. This wonderful family selflessly made room for us in their joyful home and busy family life in Brisbane, Australia, during my long periods of cancer treatment and convalescence following major surgeries and tactfully prevented me from crawling into my cave.

Introduction

If you’re reading this introduction, you probably have cancer, and if not, then someone who is important to you does. Cancer is a scary word; to most people it means certain death, but while it is true to say that your life has changed beyond recognition, death is far from certain. Indeed approached with the right state of mind, there is hope for a cure for many and if not a cure then potentially years of fulfilling life for most patients.

Ten years ago the author of this book sat in a physician’s office and heard that scary word. In that moment his life was transformed, and since then he has lived with a sometimes-silent and sometimes not-so-silent intruder. He has endured many medical visits and intervention, often fearful, usually uncomfortable, and on occasion embarrassing. He has traveled a road of emotional turmoil, one of hope, disappointment, and fear. And like so many individuals, he did so relatively blind because no matter how hard his caregivers, including myself, tried to explain to him what was going to happen and how he was going to feel, we regularly failed, not because we didn’t care rather in part because we didn’t have enough time.

This book is many things. It is the story of a survivor, it is a story of hope, and it embodies the reality that with the right care and personal commitment, you can survive. But more than that, it is a guide written by a patient, a non-medically trained person just like yourself, which enables you to understand not only the many issues around your predicament but the practical tools to deal with them. It will remove the surprises.

I told Mallory many years ago that the plan was we simply had to work at keeping him well and alive long enough for the newest and latest treatments to appear. Well, ten years on here we are, still working with the next treatment advance for his disease. And that’s the point. Cancer is a disease just like many others; it can be managed, and if managed properly by the patient and his or her medical team and support group, then there is fulfilling life after the chilling words, Sorry to tell you the bad news but … you have cancer.

A few tips of my own—sleep eight hours in twenty-four as much as possible, take some exercise within your limitations (push yourself a little on this), and from my area of expertise, take care of your gut through good nutrition. Eating well really matters more than you can imagine. Read about your condition, empower yourself with knowledge, and be an active part of your medical management process.

I’m sure you will find Mallory’s account of his experiences a good read, despite the seriousness of the subject matter. This book will help you, and I’m sure it will inspire you. Good luck in your own journey.

Dr. Sam Slattery

Preface

In July 1985, the media was abuzz with the breaking news of President Ronald Reagan’s colon cancer. The seventy-four-year-old Reagan’s malignant tumor was excised via bowel resection (colectomy), and he recovered well. Medical institutions sensibly took advantage of the hype and media exposure to raise public awareness of the signs and symptoms, causal factors, screening for, and treatment of colorectal cancer. At the time, I resided on the charming little Caribbean island of Grand Turk, Turks and Caicos Islands, with my wife, Prudence, and our baby son, Myles. (We are New Zealanders.) I was thirty-three and working in a professional accounting capacity, so I was an expatriate yuppie, or I suppose yippie given the island location. As with most of my contemporaries, my interest in the president’s condition was essentially political, not medical. Our baby boomer generation had everything going for it, and the broadcast and published causal factors for colorectal cancer, including lifestyle-related risk factors, were of only passing concern. But time is inexorable and now, almost thirty years later, about one in every twenty of us must contend with this life-threatening disease, the third-most-common cancer diagnosed in both men and women in the United States.¹

If you have been diagnosed with colorectal cancer, then you and I are fellow travelers on this physiological, psychological, oncological journey. We’ve coped with the traumatic transition from BC (before cancer) to AD (after detection), and we’ve become acutely conscious of our own vulnerability and mortality. If you’ve only recently faced this transition, the objective of the short chapters that follow is to provide you and your family with a compendium of relevant information, perceptions, and guidance from a patient’s perspective ahead of your medical treatment; to shorten your learning curve; to reduce apprehension and anxiety; and to help strengthen your resolve in dealing with this life-changing condition. My medical journey has been a repetitive process of discovery, with the specifics of each treatment revealed only at the time of treatment, hence my motivation to produce a book to give newly diagnosed patients a prospective medical road map from the outset. If you are an experienced cancer survivor, I trust you’ll be able to relate to the content and will find it uplifting.

I was diagnosed with stage IIIB rectal cancer in July 2004 at the age of fifty-two. Having surpassed ten years as a cancer survivor, I was encouraged by my medical practitioners and others to relate my medical and philosophical journey to provide hope and purpose to fellow colorectal cancer survivors and their families, particularly newly diagnosed patients. An abdominoperineal (AP) resection was necessary in July 2004 due to the tumor’s low rectal position, and I became an ostomate, permanently requiring a colostomy bag, which is an inconvenience I readily adjusted to physically and mentally. At the time, I was advised that the five-year observed survival rate for stage IIIB rectal cancer patients was 52 percent. The survival statistics are available on the Internet² for those who are interested; I’m not, because I don’t consider myself to be a statistic. I have never asked a medical practitioner how many Auld Lang Synes it was thought I had left to sing.

Over the years, I have learned that modern medicine treats the patient, not the condition, and an unbelievably talented and dedicated medical team (see My Medical Team) has kept me ahead of the medical curve, despite the spread of my disease (distant metastases) and other setbacks. My cancer has been measurably responsive to each phase of treatment I have been fortunate to have received. I’ve been told I have favorable biology, so I’m lucky—you know, like Lucky the dog, with his tail and other bits missing and an abdomen that’s a checkerboard of surgical scars. Perhaps you also have favorable biology.

From 2004 to 2012 my medical journey required extensive travel from our home in Providenciales, Turks and Caicos Islands, to Brisbane, Australia, because oncology treatment was not available in the islands and we had total family support in Brisbane; so it has been a journey measured in distance as well as in time. Fortunately, the opening of a new hospital in Providenciales led to the establishment of a fully equipped oncology clinic here in January 2012 (under the direction of visiting medical oncologists), and I have been receiving advanced oncology treatment in Providenciales since mid-2012. Consequently, arduous overseas travel is no longer necessary. I mention this because in the United States your specialist oncology treatment is generally available in all of the main centers, so overseas travel for treatment will usually not be necessary.

I’ve discovered that purpose and humor and the joie de vivre that kept the BC man so buoyed still exist; it’s just that the AD man must consciously seek out these fundamental joys while bailing out the lifeboat on a sea of reflection.

Colorectal cancer patients cannot undertake this journey alone; we need the support of a principal caregiver (and there will be times when your principal caregiver will need support from family and friends and possibly also from medical professionals). For baby boomers, the principal caregiver is often their life partner but can be another family member or relative or friend or perhaps a health care provider from the health care system. Prudence is my very accomplished and supportive caregiver, and apparently I need a lot of supervision. She has literally kept me going all these years, always available to assuage my more than occasional episodes of cantankerous behavior (fussing) with her immensely positive outlook and the patience of Edith Bunker.³

You and your caregiver must become involved in every aspect of your medical treatment from the outset. Your medical team will likely ultimately comprise an impressive list of practitioners including your (referring) general practitioner (GP), ER physicians, specialists such as surgeons, anesthetists, medical and radiation oncologists, radiologists, gastroenterologists, gynecologic oncologists, urologists, internists, pathologists, pharmacists, oncology specialist nurses, stomal nurses (enterostomal therapists), gastrointestinal (GI) ward nurses, surgical ward nurses, general ward nurses, laboratory, pharmaceutical, imaging, and other medical technologists, physiotherapists, dieticians, hospital administrators, and others. When necessary, you need to be able to specify to each of them your surgical and medical history, your current condition, and any symptoms, as well as your currently prescribed medications and any allergies you may have, by accurately committing as much personal medical information to memory as possible and by having your medicines and recent medical scans and reports at hand (never turn up for imaging without all of your previous scans/film, with the accompanying radiologist reports).

Since July 2004, I’ve had perhaps 150 blood tests and dozens of scans, including CT scans, PET scans, MAG 3 renograms, MRIs, X-rays, and ultrasound. In addition, I’ve had many colonoscopies (via my stoma apart from my first colonoscopy). These procedures cause relatively little discomfort—just a scratch with blood tests and cannula insertions for the scans; fasting for a number of hours and then drinking oral contrast before CT scans; keeping absolutely