Expression. My cancer: a gut feeling.

Description

Book details: 245 x A4 size pages (font size = 11). Word count: 104,010 words with several images and diagrams/charts.

Foreword

To be told you will die, sooner than later, of bowel cancer, is a proverbial punch in the guts. I didn’t tell everyone I knew, everything; not in the beginning. I learned to be selective on a person-by-person basis with intimate personal details. It was not until I was at the point of completing this book, when I had my head around my dire situation, that I was confident to share my experiences. Gossip is not helpful. I wanted to fend off potential schadenfreude a little while longer. I have nothing to hide but maybe something to give, before I kick my own bucket. I don’t fit the stereotypical cancer patient (if there is such a thing), nor do my friends who have also been recently diagnosed with late stage cancer of various types.

I didn’t immediately google cancer, I didn’t want to know too much about Mucinous Adenocarcinoma (MAC), too soon. It is an uncommon cancer type. Science has always been a difficult subject for me to comprehend. It still is; all of those hard to spell words and intelligent molecules. However, I want to share my story, it may help someone else be diagnosed earlier and that gives me purpose, which in turn makes me feel better. This book project was way out of my comfort zone but that did not deter me trying to find out how I succumbed to bowel cancer so blindly. I haven’t been around long enough, not to know better.

When I overcame the terminal, incurable shock with my family and close friends after being easily upset for two months, I began my quest. If we bowel cancer patients speak-up about our personal experiences, there is a good chance general bowel cancer healthcare will improve in New Zealand. The New Zealand health system in my opinion is generally, woefully behind in comparison with international cancer treatments and outcomes. This was worryingly explained in a New Zealand magazine the Listener (February 1 2019) in an article entitled ‘Survival of the Richest’. Cancer treatment for many New Zealanders runs the risk of becoming unaffordable. The idea that I can provide case-study assistance, in itself is probably presumptuous. I am not medically qualified to argue finer points. But I believe sometimes to go forward we have to look backwards. I have learned to now ask questions and not always take things at face value. It pays to take note of all sides, of all stories.

I cranked up the computer. I wanted to know what scientists today say about cancer. I plan to be open minded. I am bored listening or reading the same old, same old.

I don’t pretend to have understood or solved anything let alone find any cure, because at present there is none, for we MAC terminals. In fact, I find a lot of information about cancer in general speculative and contradicting. Science research seems surprisingly a bit hit and miss at times. Scientists all have their own conclusion and they are not necessarily correct in their hypothesis but at least their publications can be peer-reviewed by relevant experts in the field and hopefully held accountable. I did chuckle that Accountability in Research is also a topic researched. The internet at times seems rife with pseudo-science commercially motivated answers. I think if all cancer ‘terminals’ had their life health records linked-up then maybe one day a smart computer could compute the data to find cancer associations. After all, as populations’ age, cancer is increasingly the cause of more people’s illness and death, which leave such a high emotional and financial debt to human society. It also strikes young people. Cancer in the real world.

Yes, I am guilty of selective information picking. There sure is a lot of stuff to sieve through. I quote what grabs me. Perhaps this is a simplistic approach to a complex cancer issue, but one that suits me. My writing is not intended to be a textbook for study. It is more of a discussion initiator. I have to concoct my own self-help plan, which may in fact be self-harm, because modern medicine offers no better alternative for me. I am fighting myself for my own extended survival.

With regards to a family-matter, I aim in this book to clear my feelings of childhood guilt of gullibility. I will clarify this point in Chapter 12. I relate this to personal mistrust issues I have which has influenced my choice not to accept medically suggested cancer treatment for MAC.

My book title, Expression was chosen as it describes both gene activity and freedom of speech with regard to having an opinion about important issues in our lives.

At times, my comments and photos will be personal and disturbingly in-your-face. I make no apologies for this: cancer is not a pretty side-show. I take responsibility for any errors and hope the reader will check points of medical interest. I want to cover my arse! My stories tend to end up as tragic black comedies, even if I plan to be serious. This one will be no different. I figure I would rather my musings be read that way compared with a murder mystery, although my intention is tumour annihilation. I know the military analogy can upset some people because ultimately the battle will probably for most advanced disease folk be lost, at no fault of anyone, and should not be considered a personal failure. I don’t mean to cause offence, unless it is intended. I do mean to conduct an internal civil war, my body is the mass being taken over, gently. Chemical side-effects scare me. I also hope to fight back with dry humour, as being angry will probably hormonally feed the mutant cell cancer front line.

My sometimes random thoughts may even help psychologists, as understanding dying mind- set is important in the ‘dealing’ with empathy and compassion for the terminal patient requiring palliative care. We tend to be a bit subjective.

We can also be impatient. When ill, there is a lot of time lost, waiting around. Due to the sheer numbers of people presenting with cancer in New Zealand and worldwide, this problem will only increase as the status quo remains in available clinical resources.

I know, however I die, I will die with cancer. The cancer may not actually be the cause of my death. Numerous studies have shown sometimes people at autopsy have tumours that were undiagnosed and did not cause death. Usually though we die by complication or a sub-disease. Or vehicle accident.

This book is divided into sixteen chapters with various illustrations and images which each focus on a specific aspect of either my personal story through my cancer journey or my research and reflections on scientific study material related to cancer. The order of events in the past couple of years are not always linear. Cancer has a habit of disrupting plans. I also get side tracked as new information comes to light on how I may improve my precarious situation, clinging onto life. I also don’t generally name my characters, I label them. In this politically correct world it is advisable. The only pictorial face is my own, through my ages. I do not trust internet identity pirates so will not compromise anyone else. My story is intended to be science concept based with a bit of social science observation. Not a yarn. Finally, I have enclosed a glossary of some of the more scientific terms that I have used.

A successful publisher once told me a good story should be edgy. Less is more. Having terminal cancer, I think, fits that bill. Even if the topic is deemed non-commercial, all lives have a value.

The human bite is the most infectious of all.

Kerry O’Brien  February 2019

Image: Kerry O’Brien.

 

Table of Contents

Foreword. Page 3

Acknowledgements. Page 12

Introduction. 13

Chapter 1: Bummer. 15

Nature. 17

Understanding Mucinous Adenocarcinoma. 18

Ageist Attitude. 19

Lifestyle. 21

Living. 22

So, what is the C-word?. 23

Hallmarks of Cancer. 24

Epigenetics. 26

Hello Herbie. 29

Chapter 2: Searching. 30

Free radical onslaught. 30

Global Cancer Research Statistics 2018. 33

Stomach Pain. 34

Froth. 35

Indigestion. 35

Growths. 36

Hair loss. 36

Dark Poop. 36

Sharp Pain. 36

Wee. 37

Return of the Pile. 37

Taste buds. 37

Eyesight. 37

Dry Mouth. 38

Tiredness. 38

Aerole. 38

Spotting. 39

Flat Warts. 39

Fungus Toe. 39

TWO WEEKS BEFORE AMBULANCE NIGHT. 39

Metallic Mouth. 39

Bloat. 39

Breath. 40

Thrush. 40

Constipation. 40

Fever. 40

Indigestion. 40

Chapter 3: Doctor Dilemma. 42

Dialling 111 Emergency. 43

Waiting Room.. 43

Accident and Emergency. 44

Computed Tomography (CT) Scan. 45

Chapter 4: Ward 29. 47

MRI 49

Eating. 50

Colonoscopy. 50

Hospital Essentials. 53

Chapter 5: Dannevirke Community Hospital 55

Bespoke Care. 55

Chapter 6: The Operation. 57

Chapter 7: Room 10. 67

Caecum.. 70

Douglas Pouch. 71

Social Services. 72

Occupational Therapist. 72

Hierarchy. 73

Chapter 8: A bag of shite. 74

How to Apply the Pouch. 75

Post operation Diet. 76

Chapter 9: Back over the Range. 80

Foodie Me. 82

Un-Staple Day. 84

Music. 85

Numb Thigh. 85

Blood. 86

Sleep. 86

Alternative Approach. 87

Mitochondria. 88

Sugar. 90

Ways to lower blood Sugar Levels Naturally. 91

Chapter 10: MAC Options. 94

My Level 1 Strategy. 97

Clinical Advice. 98

Defector Gene Troops. 100

Ginger Gene. 101

Ultraviolet. 103

Scientific American. 104

NASA.. 105

‘The unknown fire’ 106

Blue Light. 106

BRCA1. 107

Ongoing Genetic Recruits. 108

Elephants. 110

p53. 110

Toxicants. 111

Requirements of a Good Immune System.. 113

Dendritic Cells. 114

Chapter 11: KG WOODLAND.. 116

District Nurse Service. 117

Being Mortal by Atul Gawande. 118

Daisies on the Lawn. 118

Early-Stage Symptoms. 120

Herbie Rules. 125

Blood Tests. 126

Chapter 12: Calm Camp Plan. 128

Herbertville. 137

Home Turf. 138

Chapter 13: Strategy Level 2. 141

Oncogenes. 143

Stools. 143

Hydroxychloroquine. 144

Dandelion. 145

Antioxidants. 145

Vitamin D.. 148

Vitamin C. 151

Vitamin A.. 151

Vitamin Bs. 151

Liver. 152

Hair Follicle Test. 153

Antioxidant Enzymes. 154

Microorganisms. 156

Bacteria. 157

Fungus. 161

Royal Jelly. 162

Viruses. 164

Chapter 14 Overactive Bowel 166

Oestrogen Dominance. 167

Symptoms. 167

7 ways to decrease Oestrogen dominance: Increase nutrients in the diet. 168

Hormone Receptors. 170

Senile Warts. 171

Insulin. 172

Thyroid Gland. 172

Iodine Deficiency Symptoms: 172

Cortisol 174

Tyrosine. 175

Chapter 15: Adventure Plan. 177

Benefit. 179

Life Insurance. 180

Another Tangent Cancer Burst. 180

Garage Sale. 182

House Selling. 183

Self-clean-up. 183

Herbie the Hero. 184

Can cancer cure itself?. 186

Gecko Swinhonis. 186

That gall-bladder. 187

Bile. 187

Bus off. 189

Red Headed Pigs. 190

Naked Mole Rat. 190

Mights and Maybes, Perhaps. 191

Environmental Obstacles. 192

My Trigger Summary, so far. 193

Strategy Three. 195

Stomach Bug. 198

Fuso factor. 199

Death by Number. 200

Hormonal MAC. 201

Cancer War Games. 203

Dreamland. 204

More Food for Thought. 205

Hanging in There. 207

Eye Test. 209

Back to FAP. 210

Teeth Check. 210

Gingivitis. 211

Futuristic Options. 212

Holding MAC at Bay. 215

Back Strait. 218

Oligomers. 219

Amyloid. 220

Plot Twist. 225

My MAC Gut Theory. 226

Oncology. 229

Aspirin. 232

Chapter 16: Life Concluded. 236

Glossary. 238

Help is at Hand in New Zealand. Page 240

APPENDIX: Page 241