Cancer: What they don't tell you and what you need to know

Published by Leigh Bernhardt

First published 2020

© 2020 Leigh Bernhardt

The moral right of the author has been asserted.

All rights reserved. Without limiting the rights under copyright restricted above, no part of this publication may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise), without the prior written permission of the copyright owner and publisher of this book.

Disclaimer

The author does not profess to have any medical qualifications and has based the content of this book on his personal experience and general knowledge. Any advice contained herein is not to be substituted for medical or legal advice.

The author is not responsible for any actions taken by any persons taken after reading this book and advises that in all cases medical advice be sought as required in relation to any illness, medical conditions, prescription and/or over the counter medication and products, medicine or treatment readers may be experiencing or using. The information and advice is not provided to suit any specific circumstances and is general in nature only. The reader must use their own enquiries to determine the validity and appropriateness of any advice contained herein. Reliance on any of the advice or information contained herein is solely at the reader’s own risk.

ISBN: 978 0 6488568 0 1 (pbk)

           978 0 6488568 1 8 (ebk)

Designed and typeset by Helen Christie, Blue Wren Books

You are the best project that you will ever work on.

Contents

My Backstory

1. The Diagnosis

2. Diagnosis Confirmation, Dealing with Tests, Preparing for Treatment

3. Questions to ask your GP and Treating Specialist/s Before Treatment

4. Going Through Treatment

5. Medication, Effects and Side Effects during and after Treatment

6. How to Maximise the Effects of Treatment

7. Coping Mechanisms Pre- and Post-treatment

8. How to Deal with Family and Supporters

9. Just Do It

10. What Next?

Afterword

Summary of Tips

Acknowledgements

About the Author

Footnotes

Introduction

My Backstory

In early 2008 at the age of 55, I was diagnosed with multiple myeloma. My diagnosis came over the telephone on a Friday after­noon from my GP, following some recent tests for a swollen knee after a running race.

I was a competent runner, triathlete and tennis player and kept myself in good physical condition. A non-smoker, I had also not consumed any alcohol for 17 years until after chemotherapy treatments. (I’ll go into this later.)

The GP advised me of the seriousness of this condition and said he had scheduled an appointment for me with a haematologist on Monday morning.

The haematologist explained that the condition was not multiple myeloma, but stage 4 non-Hodgkin lymphoma. It was in some ways a relief, as this disease is generally more successfully treated than multiple myeloma, but it high­lighted to me the potential for medical information to be incorrect and disturbing to the patient.

Following this diagnosis, I commenced a regime of chemo­therapy treatments involving chemicals that I was told were essential to treat the disease but that had serious, and in some cases, permanent side effects.

The chemotherapy treatments continued for six months, followed by two years of maintenance infusions of a drug named MabThera, which helped stabilise the condition.

This drug sought out and identified the damaged white blood cells and destroyed them.

Each infusion at the time cost approximately $6,000, and I had about 10 infusions.

During the treatments, I suffered from the normal effects of chemotherapy such as hair loss, nausea, mouth ulcers, weight gain, swollen stomach, loss of taste and smell and peripheral neuropathy (loss of feeling in the extremities of the fingers and toes).

I also endured the side effects of the drugs used to combat the damage that chemotherapy can cause to other parts of the body during treatment, including steroids and pain medication.

Many of these side effects were not fully explained by the treating medical practitioners, who were focused principally on treating the disease, but their impact was profound at the time.

In 2011, I underwent a stem cell collection where I was given large doses of chemicals which destroyed my immune system so that new unaffected bone marrow and blood cells could be regenerated and harvested.

These stem cells were collected using an apheresis machine. Apheresis is a process where whole blood is removed from an individual and then separated into its components such as platelets and plasma, white and red blood cells.

It was a dramatic process and involved a great deal of discomfort, including sitting at the apheresis machine for up to five hours a day for a week in order to collect the required number of stem cells.

These stem cells remain frozen at my hospital in case I need them in the future for an autologous (self) transplant rather than having to rely on a donor.

The treatment was successful, and although the side effects of loss of taste and smell and the feeling in my extremities caused by the chemotherapy treatments remained, there was a period of approximately seven years of remission until 2018.

In 2017, after years of complaining of indigestion to my doctor and being prescribed medication to treat the indigestion, I suffered a heart attack with a 99% blockage in my obtuse marginal artery.

It was later disclosed that because I was fit and relatively healthy, with normal blood pressure, my heart had worked around the blockage until it became too severe. No one thought that I had coronary heart disease, so my symptoms were treated as indigestion.

A stent was inserted into the affected artery. Apart from cholesterol-lowering medication, this issue now appears to be under control.

In 2018, I was diagnosed with cancer in both kidneys and underwent partial nephrectomies (partial removal of both kidneys) in separate surgeries six months apart.

During this process, the diversity of medical opinion between specialists was highlighted. One opinion was to remove at least one kidney, and possibly both, with dialysis as a real option. Another was to attempt to carry out partial removal of both kidneys using robotics and keyhole surgery.

The second option was chosen, and after two complex and difficult surgeries, I have returned to relatively good health with almost normal kidney function.

I also underwent two total hip replacements and hernia repair surgeries between 2011 and 2017.

I have written this book to help people who are facing cancer or other life-threatening conditions deal with the many and varied decisions they must take to achieve the best outcome possible under their circumstances.

The navigation of medical opinions, treatments, medication and recovery methods can be so varied that it takes time and significant effort to obtain the required information, consider all the options and contributing factors and make clear and decisive decisions which must be in your best interests.

Quite often, medical practitioners and nursing staff are focused on so many tasks that things that are important to you are often overlooked until they become apparent or critical.

During my numerous treatments and medical pro­cedures, I discovered that in order to survive I needed to take control of my treatments and medication, manage any advice given to me and make decisions based on outcomes and practical applications, rather than rely on swimming with the tide and hoping things turned out for the best.

This on occasion meant that I delivered clear and precise instructions to medical practitioners and nursing staff with no room for equivocation or ambiguity.

Throughout this book I will provide examples of these occurrences, and I will also provide tips that in my view are helpful and may assist you in your journey.

I am not a doctor, nor do I profess to have any medical quali­fications whatsoever. I am, however, alive after suffering through two serious bouts of stage 4 cancer, a heart attack and numerous surgeries.

Throughout these ordeals I have discovered that there are many ways to aid the treatment processes and to achieve better outcomes. Although much of this advice is out there in the system it does not always become available or known to the patient.

I have helped a number of friends and acquaintances with cancer and was able to provide useful and timely assistance during this stressful and anxious time of their lives. Their continued prompts to write about my experiences and the practical knowledge I have gained in order to help a wider audience instigated this book.

By reading this book, you have already achieved the main objective – staying alive.

We all will die of something sooner or later, so it is important to remember that cancer is a part of life for many people. The goal of staying alive and minimising collateral damage from medical interventions remains paramount.

With the often fantastic improvements in medicine continually being discovered and refined, survival rates, particularly for cancer, have risen dramatically. Recent statistics of worldwide survival rates demonstrate an increase from 50–67% (these are global figures averaged across all cancers, with some cancers having higher survival rates than others). The reasons for this increase in survivability of cancer-related illness is attributed in the main to the combination of early detection and improved treatment.

There is also significant evidence to support how a positive attitude, diet and exercise and tailored recovery strategies can dramatically improve outcomes related to these illnesses and associated treatments.

Throughout this book I constantly reinforce the advice that no matter how dire the diagnosis or the prognosis may be, a positive attitude tempered with a realistic assessment of the situation is essential to maximise the outcomes of the treatment, the management of your life in general and how you deal with future issues associated with your medical condition.

Chapter 1

The Diagnosis

It would be almost inhuman for a person to receive the diagnosis of a terminal or life-threatening illness without feeling apprehension, fear and uncertainty.

When this type of news is first delivered, the initial reaction is generally one of disbelief and anxiety.

Often the diagnosis is complex, and the treatment options and timeframes are outlined at this initial meeting.

Trying to concentrate on the discussion after the initial diagnosis is difficult, and it is easy to forget sections of the discussion and sometimes crucial information.

Tip Number 1

If possible, take a family member or support person to the meeting. Ask the permission of the medical practitioner to record the meeting. This helps when relaying the information to family or friends and ensures you have all the information delivered at the time. It also allows time to consider the details and your options.

Depending upon the seriousness of the diagnosis, the medical practitioner may provide a timeframe or estimation of your life expectancy with or without treatments.

These timeframes are generally based on broad statistics and do not consider many of the circumstances of the individual such as general health, efficacy of medication and treatments, recovery strategies and attitude of the patient.

It may also be necessary to seek the opinion of a specialist/s or even a second or third opinion before surgery or treatment commences.

Decisions need to be made when you are as calm as possible and able to consider the implications of options such as radical surgery as opposed to chemical/radiation treatments. In some cases, the option may be to wait and see, with regular scans or tests scheduled to keep track of the illness or tumour/s with appropriate intervention when required.

It is not unusual for medical opinions to be different. Research­ing your diagnosis and treatment options is useful but using online opinions as anything more than background information can be dangerous.

Tip Number 2

Once you have the initial diagnosis, research as much information as you can on treatment options, medication and associated side effects specific to your condition. Compile questions for your next visit to your treating medical practitioner.

Advising family, friends and acquaintances is difficult but necessary so that they can provide moral and physical support during the treatment/s