A TOUCH OF CANCER

Jean Charity

To Buy visit www.jeancharity.com




A light but factual look at the side-effects of cancer
treatment through the eyes of a CRP (cancer remission patient)


The Black Leaf Publishing Group
www.blackleafpublishing.com


Copyright © 2009 The Black Leaf Publishing Group

The right of Jean Charity to be identified as the Author of the Work has been asserted by her in accordance with the Copyright, Designs and Patents Act 1988

All rights reserved

The author and the publisher have not knowingly infringed any copyright however should this not be the case, please contact the author via the publisher and an acknowledgement will be gladly placed in all future copies of this book.


No part of this publication may only be reproduced, stored in a retrieval system or transmitted, in any form, or by any means, without prior permission in writing from the publishers or, in the case of reprographic production, in accordance with the terms of licences issued by the Copyright Licensing Agency.

No part of this publication may be circulated in any form of binding or cover other than that in which it is published and without a similar condition being imposed on the subsequent purchaser

All characters in this publication are thought to be fictional and any resemblance to real persons, living or dead, is purely coincidental.

ISBN 978-1-907407-00-0

THE BLACK LEAF PUBLISHING GROUP
83 Clipstone Rd West
Forest Town, Mansfield
NG190ED
Nottinghamshire
England

www.blackleafpublishing.com


For my friend, Sharon, who is fighting her own battle in Australia
and who, despite the many miles between us,
has lightened my days with her humour and understanding.

Thank you Sharon


The proceeds from the sales of this book are to be paid to
Cancer Research in the UK /USA

(Cancer Research UK registered No. 400265600)


CONTENTS


Acknowledgements

Foreword

Introduction

1 Friends and family

2 Drugs and decisions

3 Anti-social issues

4 Other adverse effects

5 Hair

6 Sex

7 Smoking

8 Faith

9 Mood swings and confidence

10 Attitude and tributes

Finale


ACKNOWLEDGEMENTS

To the wonderful Clinica Rotger for affording me all the latest in
medical know-how; for their professionalism; for their unwavering
attention and always-smiling faces – and for most of all making me
feel like ‘family’.
To the brilliant Dr José Antich Rojas
and his team for their dedication, care; and sheer determination to
prolong my life!
To my Surgeon and friend Mr Guy Clendinnon for his huge
contribution to my being here now; his prompt action; his concern and
attention – and for making me laugh!
To the eminent Professor Geoffrey H. Smith for his invaluable help,
advice, constructive opinions and explanations – but most of all for
just ‘being there’ for me.
To my Doctor – Dr Ian Marshall of the British Medical Team for his
initial persistence and diligence.

To the friends who have cared about me enough to excuse and respect
my attempts at self-imposed isolation.
And to all those fantastic caring people out there who never give up;
never stop fighting, or searching for new ways to fight this disease.
To all of them I can only say a very inadequate:

THANK YOU

THANK YOU – SO VERY, VERY MUCH


FOREWORD


Amongst all the books written on Cancer I have never seen one covering the more delicate issues of some of the side effects which can cause more distress to the patient than the actual Cancer itself. Nor, when I was diagnosed, did anyone warn me of such effects.
The onslaught on my body I was prepared for to a degree, but the changes in my attitude and personality, together with the many little humiliations and embarrassments which arose, were totally unexpected.
In writing of my personal experiences I have brought out some of the issues normally not considered quite socially acceptable for discussion, in the hope that it will give a little peace of mind to those of you who share similar concerns.
In those moments when you feel no-one understands you, and fear that you are walking a very lonely road, I hope you will pick this up and gain a little comfort from realising that you are not alone after all.
You are understood – and in good company.


ENJOY


INTRODUCTION

A little about the Author:
I am 65 years of age, female, divorced, and living alone in Spain to where I moved following the death of my dogs, two Maltese bitches Trudie & Caisha, who were the loves of my life.
I had been in Spain barely two years before I was diagnosed with Non-Hodgkins Lymphoma and was by then at a very advanced level (Stage IV) having tumours from the neck down to mid-calf, and infection in the bone marrow. The fact that I have survived this long
never ceases to amaze me.
I have no idea how or when I contracted this disease but of the original symptoms I took little notice: hair loss - the reason for which I could not fathom; diarrhoea, which I put down to changes in climatic and dietary conditions; itching at night to which I attributed the heat plus possibly the invasion of weird and wonderful insects my apartment may have been harbouring, and severe fatigue. The latter I was convinced was due to staying out partying most of the night at my somewhat advanced age.
Once one is suffering from an affliction it is amazing how one suddenly becomes aware of others fighting similar battles, and it was comments made by two other Cancer patients which prompted me to write this. Their remarks made me realise that a lot of what we have to endure is simply not talked about. We keep certain things to ourselves and this can cause us to fret. I felt if these things were brought out into the open they would cease to be such a cause for concern; and so the following is a quite brutally frank presentation of how it really is – my aim being that in sharing experiences openly it may be possible to look at the varying situations which plague us in a more light-hearted manner, rather than with feelings of shame and solitude.
Also instrumental in my putting this together was a young man of 17 years of age at the time who, during his Remission, would regularly interrupt social conversations to say: ‘It’s no fun having Cancer you know’ reminding his family and friends not only of what he had gone through, but what he was still going through. His ‘audience’ thought his comments very odd, but I thought I understood what he was trying to convey, and I empathised with him. No healthy person can possibly understand, to the full extent, how we are feeling, and whilst our bodies may heal, the scars and fears we carry remain inside.
We all have to cope with this disease in our own individual way, and whilst they can offer support, no-one can tell us how to do it. We are on our own in this. But whatever the outcome for me I have learnt much because of it, and am still learning. It has changed me. I believe I, personally, needed to stand still, take stock, and alter my outlook. The lessons I have learnt so far were long overdue, and I hope will have resulted in my being a much better and more understanding person than before.
The writing is ‘chapterised’ to enable anyone to pick out at random an issue which may be causing concern; and hopefully to realise that there are millions of us quietly coping with the same issues.


1


FRIENDS AND FAMILY





Other people, sadly, were my biggest bone-of-contention during the early treatments, causing me untold hassle. Unfortunately I had no one at my side to ward off the well-wishers; the curious; or the simply lonely who wanted to share in my ‘Moment of Glory’. Being of a very independent and stubborn nature I don’t find it easy to either accept or ask for help, preferring to shut myself off from the world when I have a problem and emerge back into it when I’m ready. The attention my condition initially attracted made me feel extremely vulnerable – like a bird of prey – and I have to admit to strong feelings of resentment at times. Especially when visitors called and my head was stuck down the lavatory pan, or I was lying prostrate and pallid in my own apathy, or the telephone ringing aroused me from a lovely deep sleep. I know their intentions were, in the main, good; but if I didn’t respond to their calls or their rings they thought I was dead! This added to my concerns.
So many people wanted to see me, but rather than feeling grateful, I questioned. Did they really want to see me or did some of them merely want to ‘have a look’ at me? There is a big difference and I could sense the scrutiny of some, making me feel rather like a freak in a circus. In short, unwittingly and with good intent, they drove me mad, and although I should have felt warmed by their concern, it had the opposite effect of making me fear the disturbance to my rest would adversely affect the progression of the drugs.
I had wanted to keep my condition to myself as long as possible and the handful of people in whom I confided promised discretion: ‘You can trust me. I won’t say a word’. But the news travelled, and I came to the obvious conclusion that supermarket trolleys and counters in local bars are not simply inanimate objects after all. They have a lot to answer for. It was totally ungracious of me to finally tell people to leave me alone; but hey, I was (and still am) fighting for my life here, and soon found consolation in telling myself I was ‘allowed’ to be selfish under the circumstances. I am still telling myself that!
From being a very gregarious and outgoing party-person, I have now become very selective about the company I keep, preferring a drink, meal, or simply a chat, with a few close friends with whom I can really relax and feel at ease. These friends are invaluable to me, and the times I share with them give me untold joy.
If I need to defend myself in any way regarding this I would simply call it self-preservation.
At the other extreme there are friends who, once your news is out, neither telephone nor contact you again. I can understand these people. What can they say? What can they do? For some, cancer is a stigma in a similar way to AIDS and the very word can strike a chill in the bones. Some are scared of seeing the happy healthy person of before deteriorate in front of their eyes. Some are scared the disease may rub off on them in some way. Some are scared of the mortality it forces them to acknowledge. Some have seen it all before and can’t bear the memories being dragged to the surface; and some are so close to the person concerned that they simply can’t bear the thought of a possible parting which will be heartbreaking for them. They can’t bear to watch someone they love so much going through a kind of hell they are powerless to alleviate. They would rather disappear, keeping their memories of that person unsullied and as they were.
It must be wonderful to have close family around at this time with all their love and support and understanding; but at the same time it must add to one’s concerns.
Do I protect the family a little or do I let them see how I’m really feeling today?’ ‘Do I try and make light of it all and bury my frustrations or do I snap at them when I’m under stress?’ It is such a hard situation for families to face. If we open up to it there is a kind of peace in this for us; but our families cannot know that peace. Only fear, heartbreak and concern. I have watched loved ones die with cancer and I would, every time, choose having the disease myself rather than watching someone I love go through it. Whilst our families have the frustration of being unable to take it all away and make it better; we have the added frustration of witnessing their pain, no matter how hard they try to hide it from us.
None of this is easy for us, but I truly believe it is much harder for our loved ones.


2


DRUGS AND DECISIONS





With regard to the treatment offered I put my faith totally in my Oncologist, mainly because I had little choice in the matter, and when he suggested using, in conjunction with my chemotherapy, a new as-yet-untried-here drug, I willingly agreed. The words ‘guinea-pig’ infiltrated vaguely into the murky recesses of my mind, but these were roughly pushed aside by the memory of what my mother would say to me when I was being particularly obstinate and stubborn: ‘Take what you are given and do as you are told’. My mother has been dead almost 50 years now, but I still find myself adhering to many of her standards and values.
The new drug, Mabthera (Rituximab) was at that time only possibly effective with my particular form of cancer, although the researchers were endeavouring to develop it to treat other forms. I have no idea whether they have as yet succeeded. Before embarking upon it, however, it was necessary to undergo various cardiological tests, all of which proved positive. I was to remain in the hospital after my first batch of chemo. in order to receive the Mabthera the following day; the initial dose of which had the effect of blocking my airways and throat and turning my face to a colourful purple hue (according to the audience its administration had attracted) and leaving me talking in an exceedingly high-pitched helium-balloon-type voice. I do talk a lot. This is a common trait amongst Aquarians I’m told, and apparently I even talk in my sleep and whilst under the influence of anaesthetic! The forms I had to sign
immediately prior to my taking the Mabthera each month, releasing the hospital from any responsibility should I die during or after its infusion, left me somewhat short of confidence, and as I signed my life away with bold flourish indicative of a courage I was far from feeling, I realised that I had little choice in the matter. The alternative seemed a non-win situation, and I now know that without this combination of treatment my chances of survival thus far would have been minimal

However, with remission came choices. Four to be precise:

1. I could keep taking the Mabthera but only every six months
2. I could take yet another drug, Interferon, three times a week (more commonly used for multiple sclerosis and leukaemia)
3. I could take both of the above drugs
4. I could take none of them.

The 4th option appealed to me most, especially when informed that I would be expected to continue with these drugs (or drug) for the next five years; but I went home to consider my options and make out a list of pertinent questions. That done, and unceremoniously dragging my
Surgeon with me to translate, I returned to see my specialist. I had decided I preferred to remain drug-free, and enjoy a better quality of life for whatever time I had left, than to pump myself full of debilitating toxins in an endeavour to prolong that time. I would probably take a gin and tonic too many one night anyway and be ‘scuttled’ way before the five years were up. I would take my chances.
It hadn’t been an easy decision to make; and once all my questions were answered I had a change of mind and did a complete turnabout. I would take both drugs.
How foolish would I be to turn down the chance of a possible extension of time? I thought of two friends who had recently died from cancer and asked myself what would they not have given for this opportunity? A possible life-line was being offered to me – how foolish would I be to refuse it?
I gave my Oncologist my decision and then nearly had apoplexy. I would continue to be hospitalised for the Mabthera, but he had taken out of his drawer a pen-type syringe used to administer the Interferon and told me I was to inject myself every Monday, Wednesday and Friday in my tummy. My sudden lack of control must have taken him aback as I screamed at him: ‘I CAN’T. I HATE needles. I CAN’T inject myself’. His assurances that I would soon become used to it did little to assuage my fears.
Nothing in connection with my illness (not even the initial diagnosis which I think I was perhaps expecting) had fazed-me-out like this. I am scared of needles. Having others continually pushing them into me is a necessary evil, but having to do it to myself was unthinkable. For the next few days the prospect dominated my mind and every time I thought about it I felt sick. I would tell myself that millions of people had to inject themselves every day; but this didn’t help. I was scared, and the sick feeling remained. Finally I decided I could take the tension no longer and it was ‘now or never’. Before going to bed that night, as instructed I took the drug out of the fridge for half an hour to let it warm up, mixed my soluble pain-killer, and put my sleeper on the side. My instructions had been to inject, take the pain-killer followed by the sleeper and go straight to bed. I was shaking. I knew I was being terribly cowardly, but although I tried to watch the television whilst I waited for the half hour to be up, my eye kept being drawn to the menacing object lying on my coffee table. I would look at it and once assured it wasn’t about to pounce on me, quickly look away again. Then my eye would be drawn back to it.
Eventually the half hour was up. I steeled myself whilst I went through the brief preparations necessary and, with eyes half closed so as not to see too much, I blanked my mind and did my first self-injection. There was nothing to it! I still can’t bear to watch anyone sticking a needle into my flesh, but somehow doing it myself (and the needle is very fine and tiny) was no problem. The relief was intense.
So intense, in fact, that I burst into tears and had a good cry.
And so the thing I had most dreaded turned out to be no problem at all.
The other experience which left me somewhat reeling was my second bone marrow extract. The first wasn’t too bad, uncomfortable rather than painful, and I likened the experience to having a sack of potatoes pulled up my back in steps, not that I have actually had that pleasure.
But the second was pure agony and I am very positively not looking forward to the next one; which I know is awaiting me at some stage. I shall just have to determine to grip the rail; grit my teeth; curl up my toes; and think of England as I try to force myself not to betray that stiff-upper-lip syndrome of which we English are so justifiably and inordinately proud. At least that’s what I hope I shall do! I must bear in mind the fact that it’s all for my benefit and when it is over I shall be released, unlike so many hostages and POWs who suffered so much worse.
We each have to make our own decisions with regard to the extent to which we are prepared to go in bombarding our bodies and permitting experimental treatments. It is our body; it is our life for which we are fighting. Some of the choices we have to make are far from easy, but ultimately they too must be ours.
It is very important that we be allowed to deal with our condition in our own individual way – whatever way that is, and not in the way others may wish for us. And this is our right. To do it our way.


3


ANTI-SOCIAL ISSUES





DIARRHOEA

From the initial onset of this totally unsociable condition through Salmonella picked up, and subsequent drugs resulting in a torn inner bowel, this is now a legacy with which I have been permanently bestowed, coming as it does without warning.
At first it caused me untold embarrassment to the extent I suggested my Surgeon wear his raincoat and wellies when examining me; and trying on one occasion to clean the hospital bathroom walls and floor with toilet paper. I didn’t want the nurses to witness my ‘shame’. It has tempered somewhat since then with prescribed tablets and two natural yoghurts per day, but can still catch me off-guard, as was the case when a visitor left my apartment just in the nick of time before I had to strip down and discard all my clothes. The visitor was not only a friend but also had clairvoyant abilities and I wondered if his sudden, perfectly timed, exit was due to his having privileged information.
My most recent incident, however, wasn’t such a lucky one. It struck whilst I was walking from the hospital after my TAC (CAT in UK) along one of Palma’s main shopping streets. By the time I got to a loo I felt very unsavoury and convinced that the whole of Mallorca knew
of my plight. It didn’t exactly help, either, when the driver of my taxi home wound down all the windows on such a cold day. That really upset me, but it was an extreme case, and normally it just leaks slowly after I have left the house feeling all lovely and fresh from my bath or shower. There is nothing one can do in these circumstances (short of always carrying a bag of fresh clothes and wipes around) except keep one’s head high and try to pretend it isn’t happening, until in a position to do something about it. For me, Bridget Jones’ type underwear has long-since replaced the lovely silk cami-knicks I used to wear; but it does cause anxiety when being pressed to socialise
‘Dare I, daren’t I?’ The answer usually lies in the close proximity or
otherwise of a nice lavatory.
It is a very undignified problem and, I feel, more distressing perhaps to the more-sensitive female sex; but to get it into perspective, it is a small, albeit more-than-awkward, price to pay for one’s life.

GAS AND WIND

With cancer treatment our bodies feel the necessity to rid themselves of huge amounts of gas and wind, and the more toxins pumped into them the more they respond in this way. It is distressing when a laugh or cough can suddenly liberate a ricochet of ‘windy-pops’ resembling the release of bullets in a firing line, when in company, but our bodies are very intricate pieces of engineering and know what they need to do to survive.
Before my cancer I recall this subject being mentioned by two friends undergoing treatment. The first was a male whose body had emitted an almighty blast in church one day in the middle of silent prayer; and the second was a girl friend who had finally asked her partner to leave her house. With some relief she informed me that her home was once more her own, and added ‘at least now I can ‘let everything go’ when I feel the need’. Now that I share their problem, I understand totally.
The body needs to release gases and does so at will regardless of our circumstances at the time; and whilst undesirable, it is unavoidable. What we have to remember is that it is merely another symptom of a much more serious condition with which our body is trying to cope.
My biggest concern in this connection used to be ‘What happens in the night when my man is staying over? Am I turning the bedroom into a gas station?’ This was bothersome to me for a while, but I have come to realise that this is no romantic novel, this is real life, and we cannot be responsible for what happens when we are not conscious. It still crosses my mind sometimes, but no longer causes me any great concern.

BLADDER WEAKNESS

The amount of water necessary to drink in order to flush ourselves out is of vital importance, but it does lead to constant trips to the bathroom which is especially inconvenient during the night when one is desperate to get to sleep. Leakage or seepage can occur anytime, but with modern panty-liners available this is not too much of a problem. Not for the ladies anyway. However, on occasion our bladders can decide to empty totally of their own volition: when laughing a lot; trying to ‘hold on’ for a nearby convenience; or even when asleep, and this can be devastating. Self-respect goes down the pan and ‘guilt’ moves in. Should this situation occur in public how reassuring it would be to be able to say casually ‘please excuse me a moment, I’ve just wet myself’ and receive the totally disinterested response ‘OK’. But, regrettably, this would rarely be the case, and so it’s up to us to cope with it as best we can. We are scared of ridicule and the loss of dignity, but why should we be? We are human beings involved in a battle for our lives and ultimately the side effects with which we have to deal to this end are of little importance.
We just have to keep reminding ourselves of this. Family and close friends, whilst not perhaps always totally understanding, will accept us as we are. As for those who don’t, they will perhaps ‘learn’ one day; and meantime do they really matter to us? We have enough on our plates without fretting about what the rest of the world may think. This is not the ‘rest of the world’. This is our world – and it’s different.
If you take my advice you will dribble, leak and wet with easy conscience – for if the body so dictates then you have absolutely no choice in the matter. Just clean up and carry on without giving the matter a second thought.
The above mentioned issues are not something we like to broadcast, but when accidents happen – as they will do – there really is no need for us to hide our heads in shame. Rather, hold our heads high, avoid the baked beans; and if anyone is unkind enough to make us feel uncomfortable either by word or gesture then a gentle reminder that it could always happen to them should make them stop and think.
The social niceties to which we have been conditioned are all very well in their place but they have to be abandoned to a degree when we are fighting this battle. We have no need to feel shame or guilt about anything, we have enough to cope with already. None of these things are our fault, and they are not under our control.
No one warns us of the little humiliations which lie ahead; no one talks about these things; no one prepares us, and this can lead to feelings of isolation. But we are not alone. Never forget there are many of us facing these difficulties and sometimes just knowing there are others in the world with similar hiccups can be a great comfort.


4


OTHER ADVERSE EFFECTS





MOUTH ULCERS

An absolute menace, but generally only troublesome during chemo.
As I have none of my own teeth it was wonderful to be able to take
the false ones out when I was alone, but there is also a down-side to
this. The jaw obviously shrinks with loss of weight and very recently,
shortly after my humiliating after-TAC experience, I was paying for
some purchases in Palma’s largest international store when my teeth
suddenly decided to take flight over the counter and land at the feet
of the very startled assistant who was serving me.
The looks on the faces of the witnesses to this somewhat startling incident kept me giggling for the remainder of the day.

APPETITE LOSS

Over time with the loss of appetite, I assume the stomach shrinks. Consequently, whilst of the utmost importance to eat well, it is at times a real effort to actually get food down. For these occasions I keep in a stock of supplies like jellies, ice-cream, bananas etc. which I find easy to manage.
With regard to what to eat, and what not to, I received no guidelines from my specialist and was told to ‘eat what you like’. In no time I had developed a sickening aversion to foods I had loved for years – mushrooms; chocolate, red wine even. The body, as in pregnancy, obviously knows what it needs or doesn’t need at certain points in time, and doesn’t hesitate to pass on the information.
When I have eaten anything very strong (i.e. mince with garlic/ onions or pungent fish) I have noticed an offensive smell permeating my navel. Whilst this frustrates me, I can only continue to poke about with finger and flannel until I am off the drugs, when I hope this will
finally cease to happen.
When the body is emitting its own aromas it can be hard work trying to smell nice all the time!

MUSCLE WASTAGE

Having been a regular visitor to my local gym for some years, the absence of working-out has dramatically added to the muscle wastage problem particularly in the arms, legs and buttocks. From being a well-toned, extremely fit individual, I now boast chicken-leg arms, cellulitic thighs and a droopy bottom! I try to encourage muscle development with light exercise at home via weights and treadmill, but it’s a very slow process and when my body has had enough, it lets me know all too quickly. The occasional aches and pains in my muscles, due to the Interferon, don’t help, and so my getting back into toned condition is going to be a matter of patience. I refuse to acknowledge my age may have something to do with this!

BALANCE AND DISORIENTATION

Having seen people of advanced years hesitatingly manoeuvring wet pavements, and fiercely gripping handrails to steady themselves when tackling steps, I now find myself in the same position. Having taken a bad fall recently I am particularly vigilant in this regard. At least it
happened whilst I was taking the trash out so I was well hidden by the dustbins.
Balance, which was never my strong point seems to have abandoned me but the odd dizzy spells which overtake from time to time are very brief and don’t cause much concern. They soon pass. Disorientation is much more disturbing resulting, as it does, in my being unable to register where I am, or why I am there. This has happened to me twice whilst I’ve been in the supermarket and I must have looked a complete idiot as I wandered around with glazed expression trying to find the elevator I kept passing. But this happens rarely and is, I think, my body and mind just packing-up when I’ve perhaps been overdoing things and burnt up too much precious energy.

HANDS AND FEET

Slippery fingers, due to either cramping or loss of grip, are very irritating and most days find me at some stage grovelling about under cupboards and furniture to retrieve a wandering bottle-top or spoon.
The burning feet which plagued me initially still pose a problem when I have been on them too much; but the biggest aggro has been caused by my nails. Fingernails now grow well, although break easily, but my toe nails (some of which I lost completely) have taken to growing into the toes; the right big toenail even trying to infiltrate its neighbour. They began doing this very surreptitiously so that I wouldn’t notice until they had securely positioned themselves under the skin. I have given up on the normal chiropodist (who can’t possibly see or feel how deeply they have embedded themselves) and have taken to digging-out and dabbing-on the TCP. Eventually this may lead to a quick trip under local anaesthetic, but not until I’ve persisted a little longer. At least I can stop messing with them when I have had enough and the perspiration starts running down my brow. Should you be experiencing nail problems, do keep a vigilant eye out and you may be able to halt any of their wanderings.
As with my other extremities the hands and feet get very cold; but unlike bosom or buttocks this is easily remedied by a pair of woolly socks or fingerless gloves – the latter introduced, and given to me, by Sharon in Australia. Wonderful in the house (the gloves I mean) as long as one remembers to remove them before washing-up.

NAUSEA, NOSE BLEEDS AND EYES

None of the following are permanent conditions and consequently need give rise to little concern.
Nausea is nowadays much more under control and initial spells of nausea and vomiting should soon pass.
Nose-bleeds can occur from time to time, but again these soon pass.
Eyes: a deterioration of the eyesight can occur which can be quite frightening, but this is very temporary condition and will revert to normal usually once off the chemo. Watery or dry eyes can be a painful source of annoyance, but they too rectify themselves.

BRAIN

Although always subject to the odd digression, my brain now wanders off at will and goes on regular walk-about. In the middle of conversations I can suddenly find myself blanking out and losing concentration; and whilst sometimes knowing what I want to say, I cannot always recall the words to express myself. A typical example recently was referring to our prime minister as ‘thingy’… I’m sure he would have been greatly flattered by this!
My long-term memory is fine, but short-term is absolutely hopeless, to the extent of walking out of my clinic on more than one occasion without settling my bill; or starting a job, getting distracted, and totally forgetting to go back to it. Again I absolutely refuse to acknowledge this is anything to do with age and will no doubt have quite a shock if I ever become drug-free and find it still happens. On the outside the years may take their toll but on the inside I intend to remain my (continental!) shoe-size!

FATIGUE

This I find the most debilitating of all the side-effects and on bad days even taking a bath or a shower seems to require enormous effort. On days like this I don’t feel like seeing or talking to anyone, and so I shut the world out until I feel better.
A normal day will find me resting on the sofa after lunch with my telephone pulled out and some soft music for company, when I will often fall asleep for an hour or two. When those sleepy eyes want to close, it is very, very hard to prevent them and in the early days I’ve been found literally head-down in my soup, or being helped out of a restaurant in what appeared to be, although I hasten to say was most definitely not, a drunken stupor.
Fatigue is part of my daily life now and whenever the need arises I will listen to my body and rest. After lunch is one of the worst times for tiredness and, if eating in the company of visitors, often I have to excuse myself soon after the meal. If questioned on this I inform them that I am getting tired, which has sometimes been countered with:’ so am I – I know how you feel’. But I don’t think they do know. This tiredness has a draining effect on the whole mind and body and is very different from normal tiredness. Not having the energy at this point to try and explain, I just escape as quickly as I can, leaving them wondering at my sudden rudeness.

IMMUNITY

Apart from the disease itself, the inevitable lowering of the immunity system, during treatment and afterwards, is possibly the only real potential danger. It is unavoidable, and catching a cold or infection can quickly lead to pneumonia with fatal results. I have known this happen to at least three people (two of whom were in remission at the
time when no doubt they thought they were ‘safe’ for the time being).The only answer is extreme caution. Whilst we cannot wrap ourselves in cotton-wool and must live life as normally as our condition allows, potentially risky situations should be given very careful consideration and avoided if at all possible. Large groups of people in confined spaces where bugs can generate and spread easily (such as on long flights) are potentially extremely hazardous. We must not forget, no matter how well we may feel at the time, that our systems have been weakened and we are still very susceptible.
If a cold or virus is picked up, on the past experience of others, I would urge you please, don’t just leave it, or take an aspirin and go to bed. Contact your specialist as soon as possible. I keep antibiotics already prescribed, for just such an emergency, and therefore would have immediate access to them should the need arise. I take nothing (neither salts nor herbal concoctions etc.) without prior approval, because many of the seemingly innocent products sold in health shops contain an ingredient which may not mix well with my current medication.
These precautions may seem extreme to some of you, but don’t forget what is at stake. Self-protection is very, very important and mention of this may be overlooked by the medics when they are concentrating so hard on resolving the main issue.

To conclude this section, thanks to modern science and the great inroads made by the medical profession there are now some wonderful drugs available, and new ones being introduced all the time. Whilst they may be very strong, and experimental in some cases, they are often our only life-line, and the inconvenience and problems they cause is really insignificant when compared to the chances they offer.
The possible adverse conditions are numerous and our advisers cannot possibly be expected to know how each individual will react. They cannot warn us exactly what to expect, and the reactions referred to above are the ones applicable to me. For those of you only recently diagnosed, please don’t assume you will experience the same, or that your body will react in a similar way; but I believe amongst mine are some of the most common, and hope that mention of them will bring reassurance, where necessary, that nothing abnormal or unusual is occurring.


5


HAIR





The fact that I was told I would lose all my hair didn’t concern me at all initially. I knew, given chance, it would always grow again, and of far more importance to me was my survival. Losing my hair was the least of my worries at that point in time.
I immediately had it cut very short so that the difference, ultimately, wouldn’t be so marked, and to begin with it came out very gently, accelerating rapidly into hands-full. When it got to the stage of only being a sparse covering on my head I visited my hairdresser to see if he could ‘spread it out’ a little for me. Ever the optimist! The gentle wash went well but as soon as he put the blow-dryer near my head there was a mass exodus of all remaining hair and, like a pause on a video, the whole salon gazed open-mouthed as my hair floated around and rained down on me. It was eerie. I returned home as fast as possible with head down in the deliberately misguided conception that if I couldn’t see anyone then they wouldn’t be able to see me, and ramming hat upon head shot to the wig shop where they shaved off the remaining stubble.
My philosophy being that if something is inevitable then one should try and turn it round to one’s own benefit, I set about getting some fun out of having to wear wigs, and ended up with a selection: long, short, straight, curly, black, red, blonde plus a couple of hair-pieces to wear once my hair began growing again. I am naturally fair, but unfortunately, even when wearing the black wig, I was immediately recognisable, and so my hopes of getting some amusing diversion out of mingling incognito with the locals and honing-in on their conversations, were dashed to the ground. (I have a somewhat ‘evil’ sense of humour.)
Body hair soon followed suit and when I got to the stage of not having one hair left. not even an eyebrow hair, the overall effect rather appealed to me – but on reflection it was a pretty drastic way to achieve depilation, and once it started to return I happily settled for the hirsute look after all.
It certainly didn’t mess about when it came, and a sudden thick downy covering all over my face resulted in my dashing off to see my Surgeon to tell him that I was turning into a hybrid. He told me I wasn’t, and it soon returned to normal along with nicking my under-arms with the razor again and myopically trying to peer into parts nature never intended us to shave anyway.
At first the hair on my head grew back very strong and curly; but since then I have lost it again, and the second time round it returned lank and straight. I had always wished for straight hair, but this was not nice, and the words ‘Be careful what you wish for’ were prevalent in my mind for sometime afterwards. It has been growing well since then and starting to curl again, but recently I have noticed it coming out and so fear I may yet be bald once more! Whilst it didn’t worry me first time round; and second time was expected; more or less a full head of hair – albeit slightly out of control – has given me back a lot of lost-confidence with which I am loathe to part, and I shall very definitely feel somewhat cheated this time. As I’ve lost weight in the face and neck, the wigs don’t seem to fit me as well as before and therefore have rather lost their appeal; so in the event it is not to be ‘third-time lucky’ I shall hope to reclaim a little of my lost dignity by swanning about mysteriously in cute little hats and other headgear.
After all, it’s not the end of the world, and – again – it really is a very small price to pay.


6


SEX





For some this will be no problem, but for others it will be quite an issue. I can only relate the anxieties I personally encountered and, being female, can only write from one point of view. The feminine insecurities which may arise from our condition are no doubt totally different from the concerns of our counterpart males, and despite years of endeavouring to understand what goes on in the male psyche I have finally given up and admitted defeat. I simply haven’t a clue. So, sorry gentlemen, but this is of necessity devoted entirely to the ladies amongst us –although if you wish to read it you may just begin to understand us a little better!
Whilst in the midst of my first chemo, I developed a sexual appetite beyond anything previously experienced, and my initial reaction to this was one of question and slight guilt. How could I fancy sex…I had cancer! It didn’t take me long to realise that I was merely sick – not inhuman or incapable, and there was no valid reason why I shouldn’t continue with as normal a life as possible. It was as though Mother Nature was telling me to grab life to the full, with both hands, whilst I still could.
Unable to have my man with me more than once or twice a month meant that in-between times I could take plenty of rest; slowly as the mood took me sort out a selection of clothes to put on one side to wear whenever he turned up; and to plan simple easy-to-prepare meals for him. But to begin with I still worried and fretted. What would he think of me now that I was certainly no longer the bright bubbly woman who had first attracted him? Would he want to abandon me for a healthy, more attractive substitute?
I soon became reassured on the above, but as time progressed and my physical condition deteriorated, other doubts crept in. The rapid muscle wastage, leaving loose skin on my arms, cellulite at the top of my legs and crinkly bottom, was not a pretty sight for anyone to behold, let alone someone special. My skin seemed to have lost its
sheen and there was a dryness to the touch. The shine had gone from my cheeks. I worried about how to look halfway decent with my total absence of hair, dark circled eyes and pallid, blotchy complexion. What if I were to have an embarrassing moment right in the middle of things – if my over-worked bladder leaked; if my laughter set off the diarrhoea; if gas decided it had had enough of being confined and wanted to join in the fun. How could I undress in front of him – and what if I fell asleep? Some of these concerns where sheer feminine vanity; but all posed problems for me and I could not imagine how anyone could desire me now. That is hard for any woman to take. How much should I disclose to him about my condition? That too was important.
With regard to the latter, I decided to say nothing. He knew I was undergoing treatment and I felt if he wished to know more and go into more detail I would play it down, but be as honest as possible.
I also decided to say nothing when my teeth fell out (again!). This time during sex. I just shoved them back in as quickly as possible and carried on as though nothing had happened. It really was the only way to deal with that particular situation, as I told myself (tongue in cheek) that he wouldn’t have noticed!
With regard to undressing in front of him, I thought this was best done in the dark, but as that’s not always possible decided to leave any undressing to him. In the throes of male passion I doubt very much whether a man would even notice if one had three legs!
General physical condition I could do absolutely nothing about; but I would set aside at least two hours to bathe, apply a thin layer of fake tan to my face, followed by a bucket-full of make-up to hide the flaws and give me some colour – paying particular attention to the eyelashes.
My aim being that if I mesmerised him with eye-contact and fluttered gorgeous long lashes at him, his attention wouldn’t immediately rove
elsewhere. The big problem here was that I soon lost all my eyelashes, along with eyebrows and, oddly enough, it didn’t seem to matter to him at all. The first time he took my wig off and threw it to the ground saying ‘you don’t need that’ I felt so touched and grateful I could have cried. Should any of the really embarrassing incidents occur, which I seem to have avoided to date due partly to taking a diarrhoea tablet half an hour before which I know will keep me ‘safe’ for at least 5 hours, and cutting down my liquid intake beforehand then, as we are both grown-up people, I shall simply excuse myself whilst I sort out ‘whatever’, returning to him with the words ‘Sorry. it’s the drugs’. I
don’t feel it necessary now to attach any importance to it.
Falling asleep on him? Yes, I sometimes do, but he himself is no spring chicken and he usually nods off too. As he also has health problems and our lives were/are so-to-speak ‘hanging by a thread’, the whole issue of sex has become so much more intense and enjoyable; and perhaps sometimes we need to live a little on the edge to fully appreciate what is on offer to us.
A question arose as to what to do/wear when going out on a date if one had wound-dressings to change. This particular situation doesn’t apply to me, but I should imagine all one can do is wear something loose and floaty; carry fresh dressings and all the necessary accompaniments
in a large shoulder bag; and don’t venture anywhere (i.e.
open fields) where there is no bathroom or suitable facility readily available. As to what to tell in a fairly new relationship – exactly what you do or don’t feel like disclosing. If it applied to me I would say nothing until absolutely necessary and then I would merely tell them I had had a ‘bit of an op.’ and ask them to please carefully avoid touching the area concerned. If questions follow and you do not want to answer, it’s simple to say you don’t wish to discuss it any further because it’s spoiling your nice time out…or something like that. The choice is yours. You say as much or as little as you wish as long as what you do say is the truth, or at least a watered-down version thereof.
To conclude, my fretting and worry was a total waste of time. If you have the right partner with you he will see only the beauty within. And if he doesn’t, then maybe he just isn’t the right partner. Whatever happens to your body you are still YOU inside, so ensure you receive the respect to which you are absolutely entitled.
If you have any doubts whatsoever about indulging in sex during this difficult time in your life, just push them aside. Do the best you can to make yourself feel good; relax; and wait for the adrenalin to kick in. It will be good for your heart. It will bring a glow to your cheeks. And it will be good for you.

SO IF IT IS WHAT YOU WANT, JUST GO FOR IT AND ENJOY IT!!!

To any healthy men out there who may have a partner going through cancer, I would beg you, please – if you don’t do this already – take the time to say nice truthful things to her:
‘You’ve a real sparkle in your eye today’ (which she probably has from the drugs).
‘Your skin looks lovely’ or ‘that hat you’re wearing really suits you’.
She knows what she looks like, and probably thinks it’s a lot worse than it is. A kind word takes no saying; and it can do wonders for the morale.


7


SMOKING





Being born during the Second World War into a family of smokers, and due to the fact that we lived with relatives who were publicans whilst my father was in the RAF, I was literally brought-up in smoke. Memories are very clear of lying safely tucked-up in bed listening to the strains of ‘The White Cliffs of Dover’, ‘Now is the Hour’, and other such war songs which wafted up to me nightly accompanied by billows of smoke. I suppose if I were to consciously relate smoking to anything it would be to comfort, security, and ‘home’; and that lovely smell of smoke clinging to tweed jackets with leather elbow pieces (now so abhorrent to the majority of the public) bring with it feelings of love and protection. The fact that such an anti-smoking attitude now
prevails almost makes me believe the major concern of our politicians and powers-that-be is our health; but the shops continually stacked with tobacco still being manufactured belie this belief! No one was aware of the potential dangers at that time; and for the lads in the trenches or out at sea, savouring their cigarettes in moments of stress was possibly their only relaxation, as with their loved ones at home anxiously awaiting news, but with the sensual use of cigarettes portrayed on the cinema screen it soon became a glamorous and sophisticated thing to be doing. In our ignorance we had absolutely no conception of the harm we were doing to ourselves.
Before I go any further on this subject I must apologise to any smokers out there whose disease has been caused by tobacco. I mean no offence and I feel for you very, very much; but to leave this section out would be to not give a true picture, and as I know I am not the only addict here felt it was too important not to be mentioned. I was actually amazed my own cancer was not ‘caused’ by my habit.
I began smoking when I was 19 years of age, since when I have tried many times to stop. Stopping I can do, but staying-stopped has so far eluded me, even with the help of gum, patches, herbal substitutes, hypnosis and acupuncture. Nothing lasts long – I always go back to it.
When it was forbidden by my specialist I threw my remaining packs over my balcony in the hope that some old passing sea-dog may find them and enjoy them, and I got through the first nine months without too much trouble. I think I was probably feeling a little too poorly to care, but as time went on I would find myself desperate for a cigarette; and am ashamed to admit I am now fully back on them again.
I know I am doing harm to my health; I know it is stupid and ungrateful of me to give in to my addiction; and yes I do feel guilty about it. But with me, all the props in the world won’t help. It is down to my own self-control, confidence and determination; and to have all those qualities at the same time requires one to be totally in command of the situation. I have self-control over many things, but not this; my confidence has taken a huge knock-back; and determination requires energies sadly lacking in me at present.
And so to all of you cancer patients out there who share this habit; if you can cut down to the odd one for a treat I would say you’ve no problems, but if you are like me and cannot do this, then it is your choice and just try not to add worry to the situation. Worry causes stress, and I have believed for many years now that stress is actually our biggest killer, responsible for many of our problems surfacing. Although no longer forbidden me, my Oncologist did hope I wouldn’t restart. I really tried not to, and despite the fact that he has seen me out walking on the ‘Paseo’ with nothing in my hand but my purse and packs of cigarettes just purchased, he has not taken me to task on this. I think he has realised I’m a pretty hopeless case. As has my GP. As far as I am concerned I can either stop smoking, or stop worrying about it, and for the time being I’m taking the easier option. If my life gets back on track one day, who knows? I may be able to give up completely, but I have no intention of wasting even a moment of whatever time may be left to me climbing-up-the-wall with unsatisfied cravings. It is just
too much to ask of me.
To the non-smokers out there I would ask you to please not judge the rest of us too harshly. You cannot know another’s circumstances; you cannot know what their life is like; and you cannot know of their lonely struggles. In my case sometimes the only crutch I have had available has been in that packet I’m scared to be without; and my answer to anyone who has openly criticised me has been:
‘You come and live my life – THEN you can tell me how to do it.’


8


FAITH





My faith in a higher omnipotent source of energy and creativity responsible for the natural beauty and wonders which surround us has been no small contributory factor in my still being here today. It is a very powerful force.
When my Surgeon first told me I had cancer I accepted his news with a calmness which surprised me. I felt no desire to rail or storm against it (millions of people have cancer – why not me?); and tears were at that stage nowhere in the equation. A feeling of pure peace descended upon me. I take no credit for this. It wasn’t the reaction I would have expected; but my main feeling was one of relief that finally I knew what was wrong with me. My last thoughts that night as I settled down in bed were: ‘Well, I am now in the hands of God, Spirit, and the Medical Profession and I shall either be ‘‘taken home’’ or guided through. Either way I have nothing to fear.’ And nor had I.
I was with my father when he died from cancer and ever since I saw his spirit, or whatever one likes to call it, leave his body, I have been convinced that our frame is only a shell we inhabit for a very short space of time. I believe our ‘souls’ live on at a higher level; and consequently I regard ‘dying’ not as the end of everything, but as ‘going home’. All the way through those first nine months of treatment I never once felt any fear. Many other things, yes, but fear – no. And it was this absence of fear which amazed and astounded me throughout that time.
I don’t remember too much about those first months – it all seemed to pass in a bit of a haze, and at times I would sleep for up to 15 hours at a stretch. Suffice it to say I don’t think it would have been included on my ‘favourite things to do this year’ list, but I do remember well the overall feeling of pure serenity and calmness which would envelop
me at times. And I never felt alone. Lonely, yes, without that ‘special someone’ at my side, but never ever did I feel alone. I knew I was not alone. I knew Spirit had drawn close to me and I could feel their presence around me all the while, guiding, comforting – and this was an incredible feeling. Sometimes when I would sit at my window looking out at the palm trees and blue sea beyond, enjoying a cup of tea or coffee, I would feel completely content; and sometimes as I lay in bed at night in that cosy relaxed state just before sleep I would see in my mind, hands reaching down to me. Slim, long-fingered hands like my mother’s and I knew they were bringing me healing. Other times, if I opened my eyes for a moment I would see the most wonderful glow of golden light filling the bedroom. These were wonderful experiences.
No doubt many people would say it was because of the drugs, and that I was hallucinating. And maybe they would be right. But that’s irrelevant. Whether right or wrong, the important thing is that it gave me comfort; peace of mind; and strength. Whatever it was, it worked for me and helped me through some bad times. To feel so strongly the closeness of Spirit, whether imagination or otherwise, has been the most uplifting and enlightening occurrence of my life, and one I feel privileged to have experienced.
I could fill a book writing about the extraordinary events and experiences which have slowly changed me from a sceptical disbeliever, but this isn’t the right occasion for that. My faith in Spirit has slowly unfolded, unbidden, over many years; the validation of their presence coming via instances too numerous to mention. They have ‘shown’ me in so many ways. I am now totally unable to deny them.
They are there for me.
Their continued presence is something I treasure and upon which I know I can rely. They come to bring comfort and guidance, and the more I acknowledge them the stronger they come. Looking back, they have always been there for me, although it took me a long while to realise it. During my illness I became even more highly tuned-in
– opening out to them completely and unreservedly; my trust in them unquestionable. They led me through, lighting my dark days as they have done so many times before, and I know they will continue to do this.
They can’t stop bad things happening to me, but they will always be there to direct me and be my strength throughout whatever may befall. My faith in Spirit is now total – and completely unshakeable.
‘Hand-in-hand with Angels through the world we go.’ I love that phrase. It often comes into my mind when I’m feeling at peace with myself.
I do feel very strongly that if I am to stay down here, then it is for a purpose. There will be a ‘job’ for me to do. There will be a debt to repay – to God, Spirit and Society, and if that time ever comes then I shall meet it with joy, humility and gratitude.
After all, it’s the very least I can do in return for all I have received.

A few, so very few, escape it: the agony and pain
and hurt, that mingles in the heart and swirls around the brain;
that tunnel full of darkness into which one doth descend
that stretches to eternity and never seems to end.

One wanders down it aimlessly, towards some dark unknown
not caring and not feeling, and so utterly alone.
Into that blackness – so forbidding – one goes without a care
and deeper one gets dragged to depths of darkness and despair.

There is no light to walk towards, no ray of hope, no guide,
no spirit left, no fight within, no heart, no soul, inside.
A feeling so immeasurable within its isolation.
just bleakness left, and misery, and total desolation.

I’ve felt its walls press in on me; I’ve felt that dark despair;
I’ve called for help but no one’s heard – there has been no one there.

But now at last, at long, long last, I see a shaft of light
just filtering through. A tiny gleam. It’s small and none too bright
but it is there. A new beginning. Just a little spark.

I know now someone heard my cries
and helped me through the dark.’
J.C. 1979

The above was written following, what for me, was the darkest time of my life. I often go through the words when I am feeling very low, and they comfort me. I hope they may bring a modicum of comfort to some of you out there.


9


MOOD SWINGS AND CONFIDENCE





I have always had my fair share of faults and foibles (possibly more than my fair share) but with the progression of the drugs I developed even more.
Despite being brought up on the ‘stiff-upper-lip’ principle, I now CRY very easily when alone and any emotive issue (especially seeing the children in the cancer appeal adverts) can have me snivelling into my hankie for the rest of the day. And when those ordinary everyday problems occur (i.e. my loo packing up; my washing machine regurgitating orange-coloured knickers in place of the lovely whites I put in, due to the rusty piping; and the TV turning into a jigsaw in the middle of my favourite programme, due to satellite malfunctioning), I can get really upset. It then only takes one more thing, e.g. spilling the salt, and I’m in floods of tears.
My Moods swing very much to extremes and a prime example of this was the day I was told I was in remission. My initial reaction that day, of course, was one of relief and delight, and as I walked home silently shedding tears of joy and giving out my thanks, my mood suddenly switched from one of thankful elation to one of guilt and depression. I can’t remember the exact date; but it was a few days after September 11th 2001. I had been spared for the time being, but all those young people doing important jobs and contributing to society had had their lives cut off in their prime and it suddenly seemed so wrong that I should have cause to celebrate at my age when so many were mourning. I arrived home that day not in the cloud of euphoria one would expect, but with very mixed emotions. It was totally confusing. I didn’t know how I felt any more. Pleased, of course; grateful, yes; humble, certainly; but also sad for all the gut-wrenching heartaches in the world . . . and sorry for myself because the one person with whom I really wanted to share my news was not around to hear it. It took me a few days to come to terms with my feelings and finally crack open that long-awaited bottle of champers to share with my two closest friends; but when I did, it tasted all the better for the waiting.
As I’ve pumped more and more chemicals into my system an irrational IRRITABILITY has developed. So many conflicting emotions pop-up and engulf me at the oddest times. Strangers walking too close to me invading what I feel is my ‘space’ can annoy me beyond words.
It is the same with shoppers standing too close to me at the check-out queue almost brushing my arm as I reach out to receive my change; and with people on elevators who insist on standing on the step immediately behind me causing me to clutch my purse or handbag to me with fierce grip. I begin to feel ‘smothered’ and have a very strong urge to push them all out of the way. Maybe this is attributable to the time my immunity was virtually extinct and had to isolate myself for a couple of months to regenerate cells before recommencing treatment. I don’t know, but it is still with me and is not a very pleasant trait.
Unfortunately I can’t use that excuse about the lady at the laundry who washes and irons my bedding for me. She launders my sheets beautifully but she has a real staple-fetish and despite repeated requests to the contrary she continues to staple little yellow strips to silk, satin and lace alike with gay abandon, giving rise to regular bouts of unladylike cursing on my part as I try to forage them out with finger-nails or scissors whilst trying not to tear the fabrics. This really winds me up, and when – on more than one occasion – I have jumped out of bed in the middle of the night and lodged one of these undetected lethal objects deep into my foot, I really get cross. I am convinced one day I shall find one piercing my eye from a pillow case I’ve missed . . . but I continue to use her as I continue to curse her. I have tried other laundries but none with her immaculate results.
NOISE also bothers me now. The ring-tones of mobiles going off in restaurants when I am trying to enjoy a quiet meal with friends not only makes me jump (nerves) but drives me mad. I find it so rude and intrusive – but in fairness I have to admit this is far more likely to be due to the onset of old(er)-age than any medication!
My lack of control over my emotions does disturb me and I can only console myself with the thought that if I ever get all the drugs out of my system then my personality disorders will rectify themselves and revert to normal. Age notwithstanding.
DEPRESSION can hit completely out-of-the-blue for no valid reason; but when it does it never lasts long as I soon seem to be ‘guided’ out of it. The sight of a Downs-syndrome child; a person in a wheelchair with only half a body; or a guide-dog leading its owner across the road appears with perfect timing to give me the jolt I need to get myself back on track and really count my blessings – of which I realised at an early stage, I have very, very many.
CONFIDENCE continues to be at a very low ebb. I feel I have totally lost all skills I once had, and the thought of even holding a dinner party; driving a car; or getting on horseback, now fills me with trepidation: an element of fear has taken over and even the thought of the simplest activities can overwhelm me. Consequently I am now exceedingly uncomfortable with large groups of people, and veer away from most forms of commitment.
This is in no small measure due to my confidence being knocked very badly shortly after I went into remission. Unbeknown to me, all the chemicals in my system had begun to take their toll and show in my outward appearance, and this was brought home to me very forcibly as I was out taking my very first evening stroll since treatment began.
I was walking by the sea; the sun had gone down, there was a gentle breeze blowing, and it was a lovely evening. All was well with my world as I strolled along, face turned skywards, taking in the wonderful air and feeling of freedom. I felt very happy and complacent. Perhaps too complacent. It was whilst I was waiting to cross the road to go back to my apartment that two young girls in an open-topped car drove past. Their sneering and jeering at me as they went by had me rushing home and confronting the mirror. What I saw shocked me. I had recently received my dose of Mabthera; my new hair was sprouting in all directions; my ‘orange’ eyebrows standing out in stark contrast to my pallid skin, and the fake tan and make-up
I’d plastered on in an attempt to achieve some colour had totally disappeared. I’d obviously completely absorbed it all. I hadn’t realised how gaunt my face had gone; how crepey my neck was; how ILL I looked. It seemed to have happened overnight and I guess I hadn’t really looked at myself properly; certainly not through anyone else’s eyes. In my all-black outfit with my marble-coloured face, I really did look like something out of ‘Christmas past’.
I actually hated those girls then; but in the event they had done me a favour and I immediately took the black clothes off and put them into the back of the wardrobe. It took me a while to actually venture out again after that; and if I’m having a day when I’m showing a weird resemblance to one of the ‘Munsters’, I abandon all thoughts of going
out that day and stay indoors out of sight.
I am no longer the person I was. My attitude to life has changed and I am basically a much calmer person. I am more moody and irritable for sure; but hope these are only temporary aberrations. My eyes have been opened to the simple, really important, things in life and my compassion has increased. Material things no longer hold any interest for me. I now live very humbly and simply without all the trappings I once considered so essential, and in living this way I have found a richness far beyond anything I could have imagined. I have had time to stop and ‘smell the daisies’ and see things which have been right under my nose all this time, and to which I have paid no attention previously.
A couple of years back I was awaiting delivery of some new bedroom furniture which should have been delivered some three months previously (but this is Spain), and when I finally received the telephone call telling me my furniture was ready for delivery I was delighted. However, before I could even speak the man on the other end of the ’phone added ‘but we can’t deliver it because the warehouse holding it has been burnt to the ground and your furniture
with it’. For some reason this really appealed to my somewhat warped sense of humour and as I burst out laughing his very concerned utterances of ‘Is no joke. Is no joke’ made me find the situation even more amusing. I doubt very much that, before my illness, I would have found my furniture going up in flames such entertainment.
But my priorities are now completely different from before and what once mattered is now of little importance. For me, to wake up in the morning and know I am still here is Important; to see and revel in the every-day wonders all around me is Important; to relax in easy company over a drink or a coffee is Important; to watch the sun go down, the moon come up, and the stars appear in the night sky is
Important; to inhale the atmosphere, smell the air, hear the birds sing, is Important: grasping my happiness in the simplest of things to the full, and being true to myself, is Important.
Whilst plans are not in my curriculum any more, I do still spin my dreams, and I hold fast to them.
They are different dreams now. I live in a different world from before. I hear a different drummer and follow a different star. But I like my life this way and, despite all the down-times, what I am never allowed to lose sight of is how lucky and blessed I truly am.


10


ATTITUDE AND TRIBUTES





Attitude when coping with this illness is, I have realised, very important.
When I was first diagnosed the translator for my Oncologist (who was also his assistant at the time) took me on one side and said ‘you will get through – you have the right attitude’. He then went on to tell me the story of a lady they had treated some years before. Despite all their efforts her cancer had spread vigorously and finally they could do no more for her but feed her palliatives and keep her as comfortable as possible. She was totally hospitalised and they forecast only a few days left for her. Apparently she had this wonderful attitude: she always managed a smile for the doctors and nurses; she never moaned about her condition; and she never gave up on it. Her spirit, he said, was indefatigable and her positivity amazing. As was
her recovery…When they had given up all hope for her (which they do not do easily here) her cancer suddenly began to abate of its own accord, and she is still here today living a cancer-free life. He told me the Medical profession could find no logical explanation for this; but they were convinced her own attitude had been a huge contributory factor. She never gave up. She never lost hope. And nor should we. Miracles do happen, every day, and often when least expected.
We just have to believe and go forward with a positive attitude.
To a degree, through the loss of many friends and family (far too many), I had been well prepared for my cancer; but the most horrific was my step-sister-in-law who died just before her 34th birthday. Today she would not be allowed to suffer in the way I saw her suffering back in the 1970s. Her endurance, her determination, and her courage, had to be seen to be believed. She never gave up her fight;
never gave up on her faith, even when she was so ravaged her physical side was almost unrecognisable. As we both worked full-time in those days we never really got to know each other until her illness; and one of the last things she said to me was; ‘I’m frightened. But one good thing has come out of all this. If it hadn’t happened you and I would never have become so close. I’m glad we have.’
Such generosity of spirit is rare indeed, and I will never forget her words.
I admired her so very, very much. The thoughts of her have helped me on many occasions, and her inner light and spirit which shone through has been my inspiration. She left behind a daughter who is now a doctor in the medical profession…and so her light continues to shine.
On my first draft of this writing I added in the following paragraph:

If messages reach the ‘other side’ then I have one for her: ‘The forget-me-nots are still flowering.’ Who knows, she may receive it.
And she will understand.

Since then, whilst chatting just generally on the phone to my ‘clairvoyant’ friend, prior to our finalising our call, he said: ‘A lady has just ‘‘come’’ to me with the most enormous bunch of Forget-me-nots. She said they are for you. You are to treasure them.’ His words were so moving they made me cry. But you must make of this what you will. I relate my life now to BC (before cancer) and DC (during cancer). Four months BC my closest friend died from breast cancer. I’m not going to disclose her real name in case it should cause any distress to her family; and so shall call her Louise. From the moment we met (only circa 12 years before) we had a wonderful affinity. Our lives seemed to have been remarkably parallel, and when something untoward struck one of us, a similar event would soon follow with the other. It was quite uncanny.
Louise and I shared our laughter and our tears, our opinions (which sometimes clashed) and our cigarettes and red wine. I can always see her eyes smiling across a table at me when I’m pouring from a bottle of red wine (which I am just back to drinking by the way). She was the most elegant, well-groomed and tastefully tuned-out woman I
have ever met, and always looked immaculate from head to toe. She only ever wore few colours (cream and black being the prime) and when her hair thinned she bought Paddington Bear hats to match. She looked like a sophisticated little doll in them. Throughout her illness, albeit it took her time and effort – she was meticulous about putting on her make-up; and even right at the end in the hospital her nails were immaculately manicured and varnished and she insisted on having her own pillows with her from home.
She was highly intelligent, one of the kindest people I have ever met, and over-riding her not-inconsiderable beauty were the most incredibly enormous brown eyes. Exceedingly chic, it was her continued grooming throughout her illness which impressed me; and when I’m
feeling really lethargic and too lazy to make an effort with myself her influence comes to bear and (not always, but often) I will be spurred into making that effort.
Though very different in looks, we could almost read each other’s minds and thoughts would often pass between us when in company. On one occasion at a party, Louise entered a room in which I was standing talking. We briefly caught each other’s eye and the next minute were both out of the door running helter-skelter down the drive in our high heels and the pouring rain, giggling like schoolgirls.
Not a word had passed between us.
Although we would rile each other at times, I loved her like the sister I never had.
Shortly before she died she insisted on giving me a beautiful bright red woollen scarf. After first getting approval from her daughter that she wouldn’t find it insensitive, I wore it to Louise’s funeral. I have no idea what the other mourners thought about my turning up in bright red – but that didn’t matter. I knew Louise would have been pleased. She had a great sense of humour.
There was an expletive she would use. It’s a word I normally can’t stand to hear, but she would say it so elegantly that, coming from her, it was different. Somehow the dignity and panache with which it was delivered made it effective yet totally inoffensive. One day I was being hassled by people and feeling quite unwell, when into my mind came the words: ‘Tell them all to f . . . off.’ These were not my words. They were Louise’s words and I knew she was there, supporting me. It made me laugh.
A lot of comfort, humour, and encouragement has come to me through the thoughts and memories of her. I miss her.
My father was another person who was concerned with his appearance, always immaculately turned-out. Even on the evening he died, before he fell into a coma, he insisted I hand him his hair-brush; and although he barely had the strength to lift his arm, he gave his still-wonderful head of hair a ‘touch’ of the brush.
The fortitude and non-complaining attitude of that wonderfully brave and gutsy man was an illuminating experience for me, and I am so very, very proud of him. I was privileged to have been his daughter, and I only wish I’d thought to tell him that whilst he was still alive.
Special tribute as far as attitude is concerned must go to the daughter of friends of mine, who did unbelievably well whilst in remission from leukaemia. She raised over £4,000 plus Gift Aid for CLIC (Cancer/Leukaemia in Children) by doing a sky dive with the Red Devils jumping from 13,000 feet and freefalling for 8,000 feet. She then went on a kayaking expedition to Alaska; and caught up with her studies to exceptional level. For dedication, determination, endurance and sheer courage she is second-to-none. She is an incredible young lady – and a shining example of a, sadly, often criticised younger generation.
To move away from cancer for a moment, but relevant with regard to attitude, is that other shining example of courage over coming adversity which must have touched the hearts of everyone in the UK, as that little lass from land-lubbed Derbyshire (which also happens to be my own home county) sailed round the world single-handed breaking all records. She set herself a goal and undaunted, against all odds, she took on the elements and the sea and sailed to victory:
ELLEN McARTHUR.
As I watched her finish what she had set out to do, the tears were streaming down my face; and I came to the conclusion that no ‘piddling-bit-of-cancer’ was going to get the better of me. She’d DONE it. She’d come through all the hazards and set-backs and she had DONE it. She had won her battle for success. God willing, with the same dedicated determination and grit, so can we.
The endurance and fortitude of the aforementioned people (plus many more not mentioned) has influenced me greatly and provided me with the will to keep going at times when morale has been low.
Rather than depressing me, the memories of those no longer with us, and the grace and courage with which they lived their lives and coped with their illnesses, gives me great incentive and purpose. I have gained so much from them, and the essence of these very special people is still very prominent in my life.
I look upon this as their legacy to me and I am proud to have known them.
A good positive attitude is hard - nay, almost impossible to maintain when one is very sick and in pain, but by comparison serves to make the better days even more precious to be savoured and appreciated in a way which would not have been possible before.
One day, from the radio, during a ‘Thought for the Day’ or ‘Pause for Thought’ (whatever it was) I heard the words: ‘Every day holds a surprise. Sometimes good and sometimes not so good, but always a surprise’. I thought I would put this to the test and now, if it’s not been obvious to me, I always try and find my nice surprise of the day before I go to sleep. If there really isn’t one then I drift off wondering what the following day’s will be. It’s not often I can’t find something positive to warm me – an unexpected letter, an accidental meeting, a special song on the radio; finding something I thought I had lost; or even a cheeky bird being very daring and coming up close to me to remind me that I’ve not put out his breakfast. Such simple things, but pleasures I would never have thought worthy of consideration before my illness. A reminder to me of the fact that it is now the small things in life which matter to me and bring such joy; and a constant verification of my belief that out of the bad will always come some good.


FINALE


This writing was never intended to fulfil any personal egotistical ambition of my own. It can be a very lonely road one walks with cancer, no matter how many loved ones may be around offering their help and support. Feelings of isolation deep inside can surface, as they did with me at times. But now I realise that there are millions ‘out there’ in similar situations, and the road I am walking no longer feels so lonely. This is what I’ve hoped to convey to others by sharing my own personal experiences with them; and if just ONE person has achieved even a modicum of comfort from reading it, then it has been more than well worth the effort it took to write it.
This may sound very strange to some of you, but I’m glad in a way that I have been, and am going through, this experience. Whatever the outcome I cannot be sorry about it. If nothing else it is teaching me to get my priorities right, and is changing me into a different, and hopefully ultimately, much better person.
I no longer wonder what lies ahead, what my future may hold or even whether I have a future. I take a day at a time, and no matter how bad a day I may have had, at the end of it I still thank God for that day. As long as I have arms and hands with which to hold and touch; as long
as I have the ability to move around; and as long as I have the priceless gift of sight, then I know I am truly blessed; and each new day which dawns for me holds it’s own particular brand of magic – if only by virtue of the fact that I am still here to see it. I have so much to be thankful for.
When someone has remarked to me, as one or two have, that I’m ‘having a rough time’ my immediate reaction has been: ‘Oh no, I’m not. Not really.’ The survivors and non-survivors of the holocaust had a rough time; the women who were used for experimental purposes, and whose babies and families were torn away from them; and the women whose sons and lovers went ‘over’ at The Somme had a rough time. And the lads in the trenches (for most of them were only lads); and the bomber pilots setting off on what was probably to be their last night raid; and the Prisoners of War, had a rough time. My step-sister-in-law had a rough time. The people with far worse and more crippling diseases than I have a rough time, and I really can’t imagine how the families of children who have been abducted cope with that situation. There is so much of it. Far too much. Even one child is far too much, and not even faith can ease the pain they and their families must suffer.
‘Not a rough time’ I tell them ‘just a blip – a blot on my landscape – that’s all.’
We all have our crosses to bear, whoever we are, and at the end of the day it isn’t what we have to bear that’s important – it’s how we deal with it. It’s the attitude with which we approach it; and with regard to this we have total freedom of choice. Whether we choose to treat our trials and tribulations as tragedies (and I’m not referring to horrendous catastrophies or disasters here) or whether we choose to treat them as challenges to be met head-on, and from which we may learn, is entirely up to us. It is our individual right to make that choice – and to live with the consequences.
My Faith has been, and is, my preservation and my light at the end of every tunnel, and – again – it isn’t into what one puts one’s Faith that’s important. It’s putting it into something which makes the difference. There is evil in the world, plenty of it, but there is also goodness and righteousness; and it’s choosing to ‘walk in the light’ rather than in the shadows which can help us through.
In closing there’s a two-line rhyme which I really love and which I would like to share with you:

Two men behind their Prison bars
One saw walls; One saw Stars

KEEP SEEING THE STARS

Good luck and God Bless you. J.C. Palma – 2005

N.B.


Tragically Sharon left us in October 2007
Before she passed away she extracted a promise from me to get this writing published and available to other cancer sufferers. I am honoured and humbled to be able to keep that promise to her.
She is very greatly missed.

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Tag der Veröffentlichung: 18.08.2010

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