Radiation Raver: The Life & Times of Shaun Kearney

By Shaun K. Kearney

December 1999 and most people world wide were looking forward to the Millennium rollover into the year 2000.

I was a normal, married with kids, middle aged standard South African guy with all my dreams for 2000 about to happen, when one doctor shattered everything with the statement, Did no one tell you that you have cancer.

The Radiation Raver is a name that was given to me by a very good friend, after I survived 42 days of extreme radiation treatment for Stage Four Head and Neck cancer.

Today I had the bottom row of teeth extracted and false teeth fitted.

The noise coming from the linear accelerator was similar to that of a frustrated bee stuck in a bottle. The problem was that I was inside the linear accelerator.

This machine that they put you in is quite something else. Large and creepy. All alone in the middle of the room. One way windows all around. No bright lights, just the glow from the machine.

The story that follows is a documented journey of survival, from diagnosis through the surgeries and complications,to the point where we are today, many years later.

This is my way of sharing my experience of cancer with the world.

Nobody ever ruined their eyes by looking on the bright side of things.

Enjoy.

Shaun K Kearney A.K.A The Radiation Raver September 2013

• Language: English
• Publisher: Xlibris UK
• Release date: Nov 26, 2013
• ISBN: 9781493129270

Shaun K. Kearney

Born and raised in Johannesburg during the latter half of the 20th century. I attended Bedfordview and Hillcrest Primary Schools, and Jeppe High School for Boys, in Johannesburg. During my high school years of the 1970’s, I started to D J for private functions. Drafted for military conscription during the 1980’s and then the real world thereafter. I worked in the electrical and electronic industry for ten years before changing careers, to become an irrigation and pumps system designer. Married in early 1998 and never looked back. I was diagnosed with Stage 4 Head and Neck cancer during December 1999. Life has never been the same

Book preview

Copyright © 2013 by Shaun K. Kearney.

ISBN:      Softcover      978-1-4931-2926-3

                 Ebook         978-1-4931-2927-0

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

This is a work of non-fiction. Names, characters, places and incidents are factual and did take place. The dates on the chapters are not accurate due to situations beyond the authors control.

Rev. date: 11/18/2013

To order additional copies of this book, contact:

Xlibris LLC

0-800-056-3182

www.xlibrispublishing.co.uk

[e-mail]

307604

Contents

Foreward For Shaun K Kearney

An Introduction

The Beginning

Symptoms And Diagnosis 1

Symptoms And Diagnosis 2

Response From Jerry

Episode 1Ne

Episode 2Wo

Episode 3Hree

Episode 4Our

Episode 5Ive

Episode 6Ix

Episode 7Even

Episode 8Ight

Episode 9Ine

Episode 10En

Episode 11Even

Episode 12Welve

Episode 13Teen

Episode 14Teen

Episode 15Teen

Next Episode

Episode 16Teen

Episode 17Teen

Episode 18Teen

Episode 19Teen

Episode 20Wenty

Episode 21One

Episode 22Wo

Episode 23Hree

Episode 24Our

Episode 25Ive

Episode 26Ix

Episode 27Even

Episode 28Eight

Episode 29Ine

Episode 30Hirty

Episode 31One

Episode 32Wo

Episode 33Hree

Episode 34Our

Episode 35Ive

Episode 36Ix

Episode 37Even

Episode 38Ight

Episode 39Ine

Episode 40Orty

Episode 41Ne

Episode 42Wo

Episode 43Hree

Episode 44Our

Episode 45Ive

Episode 46Ix

Episode 47Even

Episode 48Ight

Episode 49Ine

Episode 50Ifty

Episode 51Ne

Episode 52Wo

Episode 53Hree

Episode 54Our

Episode 55Ive

Episode 56Ix

Episode 57Even

Episode 58Ight

Episode 59Ine

Episode 60Ixty

Episode 61Ne

Episode 62Wo

Episode 63Hree

Episode 64Our

Episode 65Ive

Episode 66Ix

Episode 67Even

Episode 68Ight

Episode 69Ine

Episode 70Enty

Episode 71Ne

Episode 72Wo

Episode 73Hree

Episode 74Our

Episode 75Ive

Episode 76Ix

Episode 77Even

Episode 78Ight

Episode 79Ine

Episode 80Ighty

Episode 81Ne

Episode 82Wo

Episode 83Hree

Episode 84Our

Episode 85Ive

Episode 86Ix

The Life & Times of

SHAUN K. KEARNEY

SURVIVING

HEAD AND NECK

CANCER

A PERSONAL JOURNEY

FOREWARD FOR SHAUN K KEARNEY

When most people were contemplating what the new millennium would bring, Shaun was agonising over how long he still had to live, having been diagnosed with Stage 4 head and neck cancer on 4 January 2000. Shaun had been dealt earlier blows in his life with his father dying when he was twelve and a few harrowing times in failed businesses which were not of his making.

I have no idea how a person reacts when told that they have a dreaded disease and are probably not going to make it. However, I do know how Shaun handled cancer, which in his own words HUNTS YOU DOWN AND KILLS YOU. During massive radiation treatment, which cost Shaun his own teeth, dried up saliva and tear ducts and caused much pain and discomfort, Shaun fought for his life through positive thinking whilst lying in a morphine-induced state.

Having beaten the initial onslaught, an enormous amount of surgery was to follow over the ensuing years, causing Shaun to lose weight and a few centimeters in height. He continued to remain positive and defy a disease, which continually threatened to take his life. At the same time his Mom, wife Nanette, her two children Angeline and Natalie and Shaun’s eight, (yes eight), brothers and sisters as well as all the friends stood by him, but no doubt, went through hell as well.

On the bright side Shaun tells me that it has strengthened his marriage and forged closer ties with his Mom, brothers and sisters. Maybe they have drawn strength from Shaun’s positive outlook and refusal to lie down, as have many other cancer sufferers who log onto Shaun’s website www.radiationraver.co.za where they can find solace, tips and tap into Shaun’s positive outlook. It has resulted in his family looking at life a whole lot differently.

One thing for sure is that Shaun does not take life for granted, appreciates the small things in life, is in touch with nature and has a perpetual smile on his face. What is amazing is that Shaun is not angry at the cards that have been dealt to him and rather than question why him, he helps fellow cancer sufferers through their depression and heartache.

The reason for Shaun writing this book is to assure other survivors that there is life after cancer and his website address speaks for itself.

In the last year Shaun has had massive surgery, which has left him physically drained. Sitting over his head like a Sword of Damocles is the fact that few stage 4 head and neck cancer sufferers have lived longer than 7 years after being diagnosed and the medication Shaun is on seems to be ineffective in that the infections attacking Shaun are becoming more frequent. However as the 7 year period for Shaun draws nigh, he remains positive and looks forward to publishing his book. He continues to exude confidence and has a rare sense of humour under trying circumstances.

On a personal note, my daughter was diagnosed with cervical cancer at the age of 28 and thank God, has made a complete recovery. Maybe complete is the wrong word as cancer always lurks, ready to pounce and to inflict much discomfort and heartache.

To Shaun—a beacon of light, a pillar of strength and a special person, I wish you long life and as a fellow Jeppe Old Boy, I add the motto

FORTI NIHIL DIFFICULIUS

—nothing is too difficult for the brave.

RONNIE TURNER

Ronnie Turner lost the fight with lung cancer and succumbed to the disease on 10 November 2011.

AN INTRODUCTION

During 1999 I was a normal, part time self employed, happily married, standard South African guy.

38 years old with a great future planned. I had most of the same hang ups that plagued everybody, mid month crisis and month end blues.

My wife, step daughters, mother in law and myself, lived in the suburbs of Kempton Park, happily going about our daily business with minimal stress levels.

During July 1999, I was temporally managing a hardware store in Greenside when the owner had a lump removed from his chest. The lump proved to be malignant but had not spread.

I am fair haired and have a light skin complexion, and as I had been working outdoors repairing and installing irrigation systems, some of my freckles became dark and suspicious and as Mister Elsbach, the hardware store owner, had just had a tumour removed, dark freckles became a point of concern.

I had four of my freckles removed and tested for all those wonderful things that life throws at you.

The results of the tests on all four biopsies came back negative. Relief.

Once again I believed that I was a reasonably healthy guy.

Out of the blue, during September 1999, a slight swelling on the right side of my neck began to grow. Being a normal tough guy that I was, I didn’t worry about the swelling as swollen glands are part of growing up. Eventually, after many hours of putting up with a nagging wife, about six weeks later, and having difficulties using a razor to shave with, I made an appointment with our family GP.

After a course of very strong antibiotics, everything on my body healed, including my navel, and excluding this lump in my neck, which had grown considerably in size during the previous weeks of treatment.

A decision was made to remove the offending bits of swollen gland and send it off for tests. The removal of the lump was scheduled for the 1st of December 1999.

The surgical removal of the lump was successful.

The story that follows is a result of the lump removed from my neck.

I come from a rather large family and I have four brothers and four sisters. For my wife and I to to phone everybody with all the different news all the time was proving to be a rather time consuming project and was becoming rather costly.

As I have family and friends all around the world, the most convenient form of communicating with everybody at once is email.

I maintained a sort of an electronic diary with photo’s for all to see. This worked out quite well as some of my family and friends were involved in the medical services and understood the doctors medical jargon rather well, as well as wanting to create my own record. Understanding the medical jargon proved to be quite a life saver. Whenever I needed an explanation on any diagnosis, I would email Jerry in Australia and get an answer in English that we all could understand.

The emails that I sent out to family members to keep all informed proved to be quite popular and the list of recipients grew and grew.

This is my story of how I survived the diagnosis and the treatment.

I have kept the diary as close to the original email format with some explanatory notes accompanying the story.

Photo’s have been inserted into the episodes with notes attached relating to the current happenings relevant to that episode. Some photo’s have been duplicated purposefully.

Please understand that some grammatical and spelling errors are intentional as much of these writings were influenced by the drugs taken on the day.

The mixed up dates on the individual chapters are linked to the days when the emails were downloaded into archive.

image001.jpg

The last healthy picture before all hell broke loose.

THE BEGINNING

Subject: Greetings

Date: 14 Dec 1999 02:23

Howzit dudes

This is a short note to let you all know that we are well despite all the problems.

I had a tumour removed from my neck on the 01 DEC 1999.

The size was 35MM x 25MM x 25MM.

Today, 14 DEC 1999, I was informed that the tumour was malignant.

I am going back to hospital on the 15th for them to do a panendoscopy.

I will keep you all informed as to what’s happening.

Until later have a good Chanukah and a great Xmas and new year.

Your brother

SHAUN

image002.jpg

The tumour was removed from

my neck on the 01 DEC 1999.

SYMPTOMS AND DIAGNOSIS 1

Subject: Symptoms etc

Date: 16 Dec 1999 09:13

Howzit Ozzie dudes

The phone call was great.

Pity about the shitty circumstances.

The reports that I have available at the moment is the results of the first bump they took out.

The results are in afrikaans because we live on the East rand, (no comments please).

"KLINIESE GESKIEDENIS

Agt en dertige man wat presenteer met ‘n limfnode in die gebied van die kaakhoek regs.

Hierdie limfnode is volgens die pasient van onlangs aankoms.

AARD VAN MONSTER

Limfnode met mates 35mm x 25mm x 25mm

HISTOLOGIE

Mikroskopiese ondersoek toon ‘n limfnode met matastaties tumor

Die tumor word opgemerk uit neste van epiteliele selle met vesikulere kerne en matige eosinofiele sitoplasma.

Mitotiese aktiwitiete is besonder prominent met tot 8 mitoses wat per 1 hoeveld vergroting getel word. Definitiewe inter-sellulere bruggies is nie. Sommige van hierdie eilande van tumorselle toon sentrale nekrose.

Immunoperoksidase kleurlings wat gedoen is bevestig die epiteliele aard van die tumor.

Die mikroskopiese varanderinge is die van ‘n ongedifferensieerde karsinoom en gesien in die lig van die anatomiese lokalisasie van die limfnode en relatief jong pasient, mort o.a. ‘n naso-faringeale karsinoom uitgeskakel word.

Hierdie snitte is ook in konsultasie met Drs. Benatar en Van Zyl gesien en hulle is dit eens met bogenoemde verslag

DIAGNOSE

Limfnode regter kaakhoek = Metataties ongedifferensieerde karsinoom"

That is the first report verbatim. All in Afrikaans. I hope that Jerry can make head or tail of this.

My GP is Dr F Le Clus.

1st surgeon who removed the first bump was Dr J P Swart of the Kempton Park ARWYP medical centre. The 2nd surgeon was an ENT Dr from ARWYP, Dr Van Heerden.

He found the primary tumours in the area of the adenoids and removed it with a couple of biopsies of the area.

Depending on the results of the biopsies and the lump that they took out on the second op in my throat will determine how much radiation treatment will be necessary.

Once I have seen my doctor with all the results I will ask him to make a detailed report on this whole affair.

I will keep you informed as to the progress of my situation.

Lots and lots of loves and kisses for all

Shaun and Nanette

ps the coffee shop was sold for a song and now some moffies are revamping and opening an espresso bar.

Notes

The coffee shop referred to was in Greenside, Johannesburg.

The Ozzie Dudes referred to is my brother and his family, who had an interest in the coffee shop.

SYMPTOMS AND DIAGNOSIS 2

Subject: Reports

Date: 19 Dec 1999 10:46

Howzit dudes

Well it appears that the doctors have got it.

I have to see an oncologist during the week to determine the amount of radiation treatments.

Herewith follows two reports. (All in Afrikaans. It’s the East Rand thing.)

1st from the scans and x rays.

TOMOGRAFIESE ONDERSOEKE VAN DIE LARINKS

Geen opvallende laringeale kraakbeen afwyking sigbaar. Die laringeale ventrikel sowel as ware en vals stembande vertoon simmetries met geen opvallende patologie hier geidentifiseer nie

RT SINUSSE

Beperkte koronale ondersoek toon prominente verskewing van die nasale septum na regs. Geen septale perforasies teenwordig nie. Die oorliggende slymvlies vertoon effens gelobuleerd. Daar is swelling van die nasale turbinate deurgaans aanwesig met indruk van vernouing van die nasale lug ruimtes.

Daar is ‘n poliep in die vloer van die regter antrum meer posterior. Geen vog vlakke of tekens van akute sinusitis getoon. Geringe slymvlies verdikking ethmoidal sigbaar maar die frontale en sfenoid sinusse sowel as die post-nasale spasie vertoon normaal.

END 1st REPORT

START 2nd REPORT

Biopsies taken on Wednesday

KLINIESE GESKIEDENIS

‘n Nege en dertig jarige men met vorige geskiedenes van metastatiese tumor in ‘n nek limfklier. Die moontlikheid van ‘n primere nasofaringeale tumor is oorweeg. Vervolgens is supraglottis, regter periforme en nasofaringeale biopsies voorgele.

AARD VAN MONSTER

Die supraglottis biopsie bestaan uit ‘n fragment 0.1 sm in deursnit.

Die biopsie van die periforme fossa bestaan uit twee fragmente elk 0.1 sm.

Die weefsel van die nasofarinks bestaan uit onreelmatige fragmente mukoiede weefsel waarvan die grootste 2 x 0.5 sm meet.

HISTOLOGIE

Verskeie snitte is van die verskeie fragmente voorberei. Geeneen van hulle toon aanwesigheid van enige vorm van maligniteit nie.

Heelwat ontstekingsveranderinge kom in die nasofaringeale biopsie voor saam met tekens van effens gekronkelde kliere en kripte.

Geen tekens van enige vorm van tumor word in enige van die snitte waargeneem nie.

DIAGNOSE

Biopsie van supraglottis. regter periforme fossa en nasofarinks : Geen tumor aanwesig nie : Akute en chroniese ontsteking aanwesig : Geen granulome nie

END 2nd REPORT

From what I have been told and my understanding of these reports is that they have got it out and I have to be careful and watch out all the time. I hope that this is the case. I do understand that I will have to have radiation treatment to make sure that the scourge of my body is obliterated.

Thanks an all

Shaun

ps Regards to the family and thanks for the long distance support

RESPONSE FROM JERRY

From: Jerry Jersky

Subject: Re: More Info More Info More Info

Date: 21 Dec 1999 10:56

Dear Shaun

Thanks for the additional details. First, as regards the wait until Jan 4: it is true that this will allow additional time for wound healing & there is some benefit in this. However, the actual REASON for the delay is that Dr. v. Dyk is away on holiday, not that it is necessary to wait for healing (unless the wound has become septic). Still & all, the main question is will the delay be harmful to you? & here the answer is positive, ie THE DELAY WILL NOT BE HARMFUL TO YOU IN ANY WAY WHATSOEVER. So, enjoy the festive season without having to spend a (small) bit of each day in Pta. The second point concerns some technical information that is missing from your letters (I don’t know why the font has suddenly changed). It’s not important from your point of view & I’ll let you know about it after I’ve spoken to them-. Finally just to let you know that Hannah & I will be arriving in Jhb. on Jan. 4 & will then be around & available to help if required.

See you then, Jerry.

Notes

Jerry Jersky is my older brothers’ father in-law. He was a top surgeon in Johannesburg and is now retired. Having a top medical man in the family has been an absolute bonus.

THE STORY

BEGINS

E PISODE 1NE

Subject: Updates

Date: 07 Jan 2000 04:56

Greetings Earthlings

This is your update on my condition.

Firstly, happy New Year and all.

The situation is a lot worse than we all believed.

I will need to have 30 radiations over the next 6 weeks.

Today I had the bottom row of teeth extracted and false teeth fitted.

This had to be done to avoid complications with the radiation treatment.

Everything seems to be okay.

Pain has not yet set in.

Tried to bite on a piece of custard slice and got my just deserts.

Not successful yet.

Staying