Introduction

Dedication
To my friends and family. Thank you so much. I love you all more than words can say.

Introduction

I wanted to write this book for every one whose lives have been touched in some way by cancer. Sadly that’s just about every one but particularly for younger people who have had cancer or are about to start treatment. For their family members as well who need to have some idea of what’s going on in the head of their child, sibling or relative. Every one is different and reacts differently to diagnosis and treatment so this is in no way a definitive guide but hopefully a helpful insight and perhaps a good starting point for open discussion and the expression of feelings. When I was diagnosed with breast cancer in April 2002, I was 24 years old and wanted information, lots of it and medical information was readily available. Information about how I should cope emotionally and how I continue life with cancer at my age was none existent. All of the literature was directed at women over forty and had very little relevance in my life because of my circumstances. I was in the penultimate term of my degree in theatre studies. I worked part-time as a waitress and did singing work when I could get it. Life was hectic and reaching a crescendo…..not the climax I expected. Having been involved in the performing arts since I was very small I chose to do the only thing I truly understand in life and I wrote a play about it and used it as the dissertation piece for my degree. This is where this book begins. Chapter 1 is the monologue I wrote and performed.
I must also confess that this writing is a sort of cathartic therapy session for me. I have needed to get these words out of my head to stop them stewing. I feel I have to find a way to make this a positive experience and perhaps my writing down what I have learned may be useful to some one else and in turn I can have peace knowing it has not all been for nothing. I would also like to earn some money to pay my debts and get back on my feet once and for all and if it was possible for a percentage to go to the charities that helped me I would be truly happy.
Here, I add my own health warning. I am brutally honest through out this writing and have used colourful (offensive) language in places. I hold nothing back except to respect the privacy of my friends and family in places. Despite the fact that this book may be distressing to read particularly if you’ve been there, the out come is good so read knowing it’s all going to be ok in the end!

Chapter 1 – The Start Of Things

The ‘C’ Word – An Autobiography

Written, performed and directed by Joanne Jones

(Jo enters, she sits and pauses in thought, looks round the room into peoples faces, smiles, looks nervous. Like a hospital waiting room. She speaks to the whole room.)

I thought that I had lived my life well.
My husband, Eddie, and I live for the moment.
We have long-term goals but we enjoy life today.
I thought that I had nurtured myself as a human, educated myself,
Taken time to examine my spirituality
Created a really strong foundation for the rest of my life.
But I was wrong.
Things are not right.
I can’t believe the effect this has had on my life, on the way I think.
I really thought I had it all sussed. I thought that I would live forever.
Now I realise I am not invincible………..and it hurts.

My life has been plunged into the surreal over the past 4 months.
It always has been a bit strange, being an actor and singer and stuff.
But now it’s gotten really surreal.

I married a piano player in perfect harmony with
One of my greatest passions – singing. We’ve had a good time.
I was 18 when we wed. I’m 24 now………still proud of my marriage.
Don’t get me wrong we’ve had our fair share of shit in life.
Families throw up all sorts of bizarre emotions
That directs your life your life in strange ways.
My younger sister has suffered from cancer twice in her short lifetime.
She’s 17 years old. We got through all of that
Not unscathed but we got through.
It gives you a strange perspective on life
When our mortality is slapped in your face
When it’s a child so precious……….. She is well now.
Although she will always need medication to exist.
We tell ourselves, ‘these are just life’s obstacles! They make us strong’
Bullocks to that. Where is the reason? There is no reason.

I have come to understand that life is a rug that on occasion
Gets whipped out from under you.
Everything you thought the day before has gone to shit.
Your plans, expectations your desires for the future all shaken up!
I suppose, how you cope with these occasions’ shapes our characters.

Recently I had the rug whipped out from under me.
My husband, Eddie noticed a lump in my breast.
I didn’t book a doctors appointment straight away. I waited 2 weeks.
Why did I do that? I know, better than most, how important it is
To catch these things early. Why did I do that?
Where is the reason in that?……….. There is no reason in any of it.

Things will never be the same again. There is no going back.

In my 24 years of existence I have never been admitted to hospital until 4 months ago.
In this four months I have experienced the following procedures.
Fine Needle Aspirate
Full Needle Biopsy
Breast Ultrasound
Another Full Needle Biopsy with a Breast Ultrasound
Mammogram
Chest X-Ray
Bone Marrow Scan
Liver Ultrasound
Blood test
Wide Local Excision or Lumpectomy, with a sample of the Lymph Nodes taken from under the arm under general anaesthetic
Echo Cardiogram
Another Blood Test
An E.C.G
1st Dose Chemotherapy
Another 2 Blood Tests
and all in that order!

It’s f#*k*#g amazing! I suppose it says something for the NHS.
I’ve really been checked out! Poked, prodded and squished in all directions
I’ve had to get my tits out everywhere I go.
It’s second nature to me now!

The first test, the F.N.A was excruciatingly painful.
The doctor inserted a needle into the lump in my left boob.
She then violently thrust the needle backward and forward to get a cell sample.
I nearly punched the b#t*h, then promptly passed out!
I’ve been better at coping with pain recently.

The Mammogram…..What a wacky experience that was.
They take your boob and squish it, and I mean squish it
Between two square Perspex plates.
You can see I’m not all that well endowed
By the time this machine had finished squishing
My tit was a foot long and I was not going anywhere!

The operation was a bit scary.
I had to stay in over night with other women having similar operations.
They were all over 40.
They op went well and I was out the same day.
I had my op at 9.30am and recovered quickly
‘cause all I could think about was getting out for a fag. (she lights a cigarette)
The old school ward sister would not let me go until I’d held down some food.
So I forced down 2 digestives and ½ a pint of water, it wasn’t easy I can tell you,
So my sister could wheel me out for a well-deserved cig!
I was home by 7.00pm feeling like my left arm and breast
Belonged to some strange alien being!

Look at me cigarette in hand
Ironic isn’t it. I am talking about the horror of cancer while enjoying a cig
I’ve got to quit, I know that.
Surrendering the things you love to do goes with the territory
No more fags for me
No booze for the following 6 months
Definitely no Class A’s ever again
It hardly seems fair. Have I not been punished enough?
I could continue doing all of these things
But then I wouldn’t have learned anything would I?
My lifestyle has to change forever. There is no going back.
Things will never be the same.
I’ve got Cancer. I don’t want to get it again.

Chemotherapy, now there is a truly surreal happening.
Firstly both of my parents attended the process with me.
So I felt like I was about 12 years old
Which was perpetuated by the fact that everyone in the waiting room was over 60!
The other patients were a chipper group all drinking tea and coffee
Cracking gags about the horrors of cancer treatment and laughing heartily
It put me instantly at ease.
They still looked at me with that horrible look of pity they hate to see themselves
”Look she’s so young.”
Then the nurse comes over to collect another patient and I get a look at three massive and I mean massive syringes the treatment comes in
My jaw dropped open
I felt, for a moment, like I had been thrown into a cartoon
Where Bugs Bunny was going to administer the dose
Then whack me in the head with a hammer!
But no, they feed drugs into a drip……thank god!!
The room was really informal. Like a big sitting room.
You sit in an armchair for ½ an hour while the nurse gives you the drugs.
They give you anti – sickness drugs first
Which, because they go directly into the blood stream,
Makes your fanny itch wildly for about 30 seconds!
It’s the craziest feeling in the world!
The first syringe was filled with a violent red solution.
I tripped out as I watched the red fluid
Curling and swirling as it mixed with the saline before entering my body
As I watch I know that this is poison and that this red stuff will make my hair fall out
Yet I have to passively watch it go into my body
My Dad looks a paler shade of grey and my mum is putting on a brave face
The nurse is really nice and chats to distract us.
It’s all cool. We can cope with this.
I can cope with this even though it’s just not right and that there is no reason.

I walked out of the clinic happy and relieved.
It was not all that bad. I went out to eat.
Caesar Salad and a Lemon Cheesecake, can’t be bad!
The next day I was really sick.
Like the worst hangover you’ve ever had x 10.
And the next few days were rough.
I’m coping now with being tired and never feeling you truly have hold of your stomach. The anti sick drugs are good.

In my heart of hearts, I thought it couldn’t possibly happen.
How could two young women in one family be struck with cancer?
How could a mother have this fate inflicted upon her daughters?
Where is the justice, where is the reason? Where is the balance and harmony in that!!?

I remember sitting in front of that desk
With Eddie on my right.
We had an idea it was bad news but you hold out hope until she says the words
‘I’m sorry Mrs Paterson, I’m afraid it is Cancer’
I reached over and squeezed Eddie’s hand and looked into his eyes.
For once, neither knew what the other was thinking.
I feel the Care Nurse’s eyes studying my face, while the doctor produces an onslaught of difficult information, She was waiting for a reaction
Waiting to grab the tissues. We didn’t cry then.
I was not going to let my emotion get in the way of receiving the facts.

When I stepped out of the office. The tears came. Eddie and I cried.
I said lots of stereotypical things. ‘Why Me? Do I deserve this? It’s so unfair’
Useless words. Useless angry words.

Then I had to make the most difficult phone call ever. I had to tell my mam
That her other daughter also has cancer.
Words are so inadequate here.
How is it possible for me to make you understand any of this.
I don’t understand any of it. Is it FATE/MY DESTINY/ MEANT TO HAPPEN
I fucking hope so. There had better be a F@*K!#G GOOD REASON!!!
Or perhaps it’s just bad luck.

That night I went out with my best friends. Eddie was in a show at the Festival Theatre
And as is the tradition in this business he went on.
I tried to relax. We ate at a good restaurant and talked about nothing in particular.
My head ached from crying but I was glad not to be at home.

I leave my job as a waitress. Too Stressed.
My husband has to give up his degree and go back to work full time so he can support us.
I have to try and finish my degree. I have to try and finish what I started.
I’ve got debts and no income. I have to give up 6 months of my life to have treatment
But I’m not bitter. I’m sure there is a reason.

Telling people is so hard. You know you are going to hurt them.
The Shock is immediate. The stunned silence is deafening.
‘Its ok’ I say ‘ You know me, tough as old boots!’
What a load of crap.

I hate the look of pity on their faces.
I most fear that. My peers look at me with respect because I am strong.
Now they see a victim.
Imperfect.
Diseased.

S#*t, I’ve got cancer. What ever I’ve been doing I’ve been doing it wrong.

I hope I’ve got the strength and that the fear does not overwhelm me.
I don’t cry as much as I did when my sister got ill.
It’s pointless. I won’t pity myself. I should not waste my time crying.
But sometimes nothing will stop the tears.
Normally the mask hides it all and I find comfort in the routine.
Nothing will ever be the same.
I have cancer there is no going back.
I will have to attend the hospital regularly for the rest of my life.
I will always be afraid of the tumour returning and needing more surgery.
Everything in my world is affected. The tumour is hormone related.
I can’t take the pill anymore.
I have to have treatment to suppress the use of my ovaries for 2 years
So I will have menopause symptoms.
The chemo may make me infertile I may not be able to have children
But I have to use mechanical contraception just in case.
My sex life has gone down the pan with my career, for this year anyway.
I’m scarred.
But don’t you worry I’m tough as old boots.

My family and friends are all round me. But I’ve never felt so alone.
I try to carry on as normal. But nothing is.
I consider my future. It could be riddled with cancer.
If the cancer is not treated I would die within a few years. It doesn’t seem real.
I know that I can Live. And I can only hope that this is a brief episode in my life.
I was very independent I find it so hard to be forced to rely on other people.
But I will do that and when I am healthy again I will repay them for their help.

Despite everything I will stay positive. I will beat this thing
Nothing beats me unless I give in to it and I am not going to
Neither are the people around me.
I will find a way to treasure this experience
To turn it into something good……………….Maybe I just did?!

Chapter 2 – After The First Dose

When I performed that play in June 02, I couldn’t have imagined how much harder it would become both physically and emotionally and for six months after my treatment I couldn’t even read the monologue because the description of the chemo would make me cry. I had 5 more doses at 3 week intervals. For me each one got harder. Not every one gets sick, some people handle the drugs better than others. After each dose I wouldn’t be able to hold down any food for at least three days. Even drinking was a struggle, which is dangerous because you are supposed to drink lots of water. I would then spend a week in a haze while the drugs raced round my system. By the end of the next week I was just about feeling human again despite looking like an alien, bald head and all when I had to go for the next dose. By the time I went for my last treatment I was sick in anticipation on the way into the chemotherapy unit and then cried and retched all the way through it. I was bedridden for 3 days, had to get my GP out for the 1st time ever for an anti-sickness injection, and cried like a baby in my mother’s bosom.
This was nearly my lowest point in life ever and I have been low. I touched on my sister’s cancer in Chapter 1. I can tell you that in 1988 at the age of 3 my sister was diagnosed with Leukaemia, treated successfully and in 1995 was diagnosed with a brain tumour. This has also been treated successfully. My mam is a single parent and has shouldered the weight of this experience alone. I was only 10 when my sister was first diagnosed and did not really understand what was going on. 7 years later when the brain tumour came I rushed to be by their side and tried to help. I’m still not sure whether I did or not. I’m not going to discuss that here and now because I hope that book will be written by my mam or sister, or perhaps as we have already talked about, together as a family at some point in the future. I can tell you that in watching my sister’s treatment there are some memories I would choose to erase, seeing her in pain was far worse then experiencing it. Watching my baby sister and my mother hurting more than I ever imagined it was possible to hurt has given me restless nights for many periods since that time. There were days when I would close my eyes and I could only see anguish in the future and the images of my sibling’s pain in the immediate past. I remember saying over and over in my mind, “if I could take it away, I would. If it was me instead of her I know I could handle it.” I had chance to test that theory sooner than I’d expected. I can safely say that nothing that happened to me was as bad as seeing my sister when she returned from brain surgery. She was 10 years old. The image haunts my worst nightmares. But it has kept me strong at times when I have been feeling sorry for myself. And everyday seeing her reminds me how precious life is, and how important family are.
You might say that I was at an advantage when I was diagnosed with breast cancer, having experienced all this. That would be correct to some degree. I new I wasn’t going to die and I was basically aware of what I was in for. The disadvantage being, my mam had to go through it again and now my sister had to watch me in pain and I know how that felt.
Over the six months I had chemo, my life basically tumbled down about my ears. My friends slowly disappeared through fear and their own issues. You lose touch with social groups because you’re not out in ‘the scene’ Then you constantly get the, “I didn’t want to disturb you…..Didn’t know if you were up to it.” In my head I would say, “Yeah but you never f@#k*!g called to find out did you?” My mouth would say, “ It’s cool. I know I should have called you when I needed you I just couldn’t see that at the time, drugs/treatment ‘n’ all!”
One great mate, my mam, my dad and his wife, my brother and sister were my nurses, cleaners, therapists and entertainment when I couldn’t leave the house because I was too sick or self-conscious. Without those people it would have been a very dark place to be and I don’t know if I could have made it through. I’m not going to speculate but be eternally grateful they were there.
I got into debt because I’d been a student and self-employed musician, I hadn’t paid enough national insurance credits, so I wasn’t entitled to any benefits. I couldn’t even get job seekers allowance because I left my job as a waitress and was not ‘actively seeking work.’ Crazy huh? I’m still wrestling with those debts; still trying to get on my feet, back to square 1!

Chemo is so hard on the body I got mouth ulcers, piles and acid indigestion. Nearly all my pubic hair fell out. I had stubby little eyelashes. I remember crying when I tried to put mascara on one evening and noticed my eyelashes were falling out. I didn’t go anywhere that night after all. It sounds shallow but after you’ve been shocked and scared by your own reflection a few times it starts to get you down! People look at you in the street. The head scarf is a give away, the bald head underneath means you may as well have a big arrow pointing at you saying ‘I’ve got cancer.’ It is a real blow to your confidence on so many levels. I am a confidant person, a singer and actor. When I couldn’t hide my weakness I found it demoralising, humiliating in a way. I couldn’t ask my friends for help, despite really needing them. I hated admitting weakness it’s in my nature to carry on regardless but in my heart I was screaming for help, support or just conversation, a laugh. I still forced my self to go to our local open mic night and sing a few songs with my guitar, head scarf ‘n’ all. I felt I had too. I could feel in my soul that I could let go and let this illness take me, become consumed by it and die or I could pull my socks up, use all my energy and fight in every way I know how.

I remember when I had the lump removed all the women on the ward were on secondary cancer’s. A woman of about 45 came over to me to chat prior to our ops. She showed me the scar from the last mastectomy (removal of breast tissue) she had had. She did not want any reconstruction despite offers. It was not pretty. She then proceeded to tell me how she was about to have the other breast removed as they had found another 2 lumps in it. She also said that she had found the first of the 2, months ago but couldn’t be bothered with the hassle and thought she’d wait for her 6 monthly check up! She had a husband and two children. What is wrong with our society that this woman should have so little regard for her own life and the long term security of her family. I know I waited a little before I went to the doctors but months is just complete madness in my opinion. I vowed at that point that I would try and look after myself better than that.

I was lucky I didn’t get any nasty infections that stop delayed the treatment. My immune system stood me in good stead. This can probably be attributed to my youth. I was only admitted to hospital for the removal of the tumour and only called a doctor to my home once. So by all accounts it was an easygoing treatment. I heard horror stories and have chatted with people that have suffered far worse than I.

I have to put in a paragraph about hair loss. I really thought I was going to cope without a problem. Ha! No, it was devastating. I had really long hair. As it started to go I had it shaved to a crew cut but it was already thin and looked bad to me. To be completely bald, with just a fuzz on your head is horrible. Thankfully my head is not a bad shape but it is not a natural bald and impossible to disguise. I could not face wearing a wig. It is just not me. I was just too self-conscious. I wore head-scarves and the odd hat. Within a fortnight of the treatment stopping my hair began to grow back. I really enjoyed having a crew cut then and it was really thick and healthy looking. I kept my hair short like that for a while but I’m growing it now and can’t wait until it’s long again. The only residual pain from that is when you see people you haven’t seen in a while and they say, “Jo, why did you cut off your beautiful long hair?” sometimes I say, “Fancied a change” and sometimes I tell the truth and watch their faces drop and try to reassure them that it’s ok. I really thought I’d handle it better but who can predict these things?

For months after the treatment finished I could not talk or even think about having chemo with out retching. I could still get queasy if thought about the smells and tastes associated with it now. There are some things that I am still dealing with.
That’s all I’m going to say about chemo. I do want to stress that the experience is different for every one. Some people continue to do a full time job throughout their treatment and don’t suffer any side affects. There are varying degrees of illness and each patient is unique.

Chapter 3 – Breast Friends

There was one, true lifeline brought to me by the charity ‘Breast Cancer Care,’ during my treatment. I was included in a therapy conference phone conversation with other young women with breast cancer, a nurse and a counsellor for 1 hour a week. This was organised through my ‘Breast Care Nurse’ at the hospital and was intended to run for 6 weeks. It was a new scheme created by ‘Breast Cancer Care’ to cope with the growing need for support for younger women dealing with this illness. I was included originally with five other women all aged around 30 from all over the country. As it turned out only four of us stayed on the line in the end. Over those six weeks we shared our most personal feelings, problems and fears. The nurse and counsellor were there to dispel all the old wives tales and clarify random ‘advice’ you get from well meaning ‘experts’, as well as translating doctor language, answering our questions and preparing us for what was to come. We are all like-minded, strong women who have had very involved careers. We were all at the beginning of our treatment and we were all really down. Sometimes we talked, sick buckets in hand (me particularly) feeling as low as you could feel. By the end of each hour we all felt a little better, a little less alone. When we came to the end of the six weeks we realised we had come to need that conversation and we made the decision to continue on our own. We booked our own conference phone (less nurse and counsellor) named our group ‘Breast Friends’ and spoke once a week for the next 7 months!!

There is a harsh reality your family and friends have to face when you are diagnosed. They do not, cannot know how you feel. There are so many times you hide your true feelings to spare there’s. I felt guilty for bringing this upon them and tried so hard to stay strong and positive. Thankfully I had 1 hour a week, always in private where I could fall apart and there were 3 other women who new pretty much where I was at because they were in the thick of it too. It was impossible to lie to these ladies when they’d say ‘How are you doing Jo?’ I’d try to reply, “Fine, getting through it” but one of them would pipe up with, “Don’t give us that polite rubbish, how do you really feel?” And so the long list of thoroughly depressing things that had happened that week both medical and emotional would come gushing out. We’d all have a good laugh at the madness of it all then chat about ways to make our selves feel better. The relief at feeling understood and not so isolated for just a moment was amazing. Sometimes one of us might say, “I’m not feeling well today, I’m only going to chat for a few minutes.” This never happened we would always end up staying on the line and having to be told to hang up by the operator as our time was up.
We would discuss everything, work, relationships, treatment, side-affects, fertility, the future. We would swap ways of dealing with difficult situations like how to deflect questions about treatment that you don’t want to answer or how to cope with questions about the hair loss. We would help encourage each other when self – confidence was at a low ebb and exchange ways to make scarves, hats and wigs more comfortable.
We were constant support for each other throughout chemo and radiotherapy. We have become good friends. It was my great pleasure to sing at the wedding of one of them, which from the word go was a future, ‘ray of sunshine’ for us all too look forward too. We have all met separately but we are still waiting to all get together at once. We have successfully completed treatment and have returned to work. None of us have returned to the same lifestyle we had. We have all chosen to re – evaluate our priorities. I think all of us have chosen to not work as hard regardless of a drop in income and find ways to spend more time with family and friends.

I would like to take this opportunity to thank ‘Breast Cancer Care’ and my ‘Breast Friends’ for their invaluable support. The charity is amazing, always on the end of a phone for emotional support or medical advice. The ladies gave me strength I never knew I had through their honesty, empathy and good advice. I will always treasure their friendship and be grateful to each of them for their selfless and unknowing contribution to my recovery.

I am still the odd one out, being the baby of the group. There is over five years difference between the others and I. I shan’t complain but be thankful for small mercies. If I hadn’t had this lifeline I think I might have been messed up by now. Instead I’ve had some outlet that reached me on a level I understand. It was a way to express the fear and feel comforted without tormenting my close family. I hope that in the future there will be more things like our conference phone group so that no one suffers alone and is left feeling like the freak of nature I felt like at the beginning of this ordeal.

Chapter 4 – Tattooed

This chapter is about radiotherapy. This consists of radiation being directed at the cancerous area in an attempt to eradicate any left over cancer cells. The procedure takes minutes and is painless. I had a treatment every Monday to Friday for six weeks. My mam kindly drove me the thirty mile round trip daily.
Through my sister’s experience and conference call I was aware of what was going to happen during radiotherapy. I had also been made aware that in order to line up the machine that delivered the treatment with accuracy, the hospital I would receive treatment at, would insist the marks were tattooed onto me. The marks are the size of a beauty spot and there are two. Now, my ‘breast friends’ and I had discussed this issue. It didn’t concern one of our group as her health cover meant she would have the tattoos removed. The rest of us were determined not to be tattooed but to insist on a temporary mark. Why should we have to when there are many different temporary options? We already have scars from surgery must we add to the disfigurement with a blue dot? The mark is small but the principal is a mighty one!
I went to that hospital appointment determined not to have the tattoos. I failed in my mission and still bare the marks. I remember saying, “ I really don’t want to be tattooed. I’ve been through so much already.” “ But if the temporary marks fail you’ll have to come in for another alignment and you’ll delay your own and others treatment if you have to change your appointment times,” the staff responded. “Please don’t make me.” They delivered the same information with more vigour. I didn’t have the energy to argue. I was feeling pretty sorry for my self, unattractive and unfit. What did it matter? My body seemed no longer my own anyway having been through the mill over the previous six months. They may as well make their final mark upon me. I wanted to cry but I didn’t. I left feeling like a worthless piece of s@#t, a lab rat, a number. One of the other ladies had the same experience as me and the third had a sticker that was re-applied when necessary with very little problem, because she stuck to her guns. One of my dots is under my arm and can’t really be seen. The other sits directly in my cleavage should I want to wear a V- neck top or low dress. It is virtually indistinguishable as a blue dot but none the less, I am aware of it and for me it is the only visible sign of my illness. I would really like for them not to be there but I really don’t want to have to pay money for them to be removed. I guess I’m going to have to live with them for a while, until my circumstances change.

Radiotherapy was a walk in the park in comparison with the chemo. The area that is affected goes slowly more black until I looked like had been sunbathing for a very long time with only my left breast out! The skin returns to normal quite quickly post treatment. The nipple gets crispy during, for want of a better description. The skin can break and become sore. I was lucky despite the crispy nipple there was no other skin damage. Movement was restricted as the skin is so tight. The daily travelling to appointments, feeling run down and depressed was not easy for mam or I. And as with all hospital waiting room experiences watching the old and infirm, the disfigured and sick wheeled in and out to be zapped is a strain all of it’s own. I went back to waitressing during this period. I also took a job as drama and singing teacher at the college I studied at. By Christmas of that year I had completed my treatment (Christmas Eve) and was working full time again. I didn’t want to go back to work. I wanted a holiday. I still need a holiday. I didn’t have a choice. The credit had run out!

Aside from the tattoo the other permanent reminder I have of my experience is the thin scar on the top left side of my left breast. This is from the lumpectomy (removal of lump.) The surgery only took a few hours. A sample of the, lymph nodes (hormone glands) under the arm were taken through the incision for the lump. Nerves and tendons had to be moved aside to get to them. Six nodes were taken from me. The cancer had travelled to only one of the six. All this helped determine what type and dose of chemo I had.

My left arm and breast have only just returned to their former self, two years on. I had nearly a full range of movement within months of having the surgery but it was painful to stretch and for a year and a bit. For that time, I couldn’t sleep in my favourite position, laid on my left side with my arm above my head, as it was too painful. The scar is now just a thin line and the scar tissue underneath has softened. I remember going for the mammogram that would give me the all clear. The nurse happily said, “There wasn’t much to work with in the first place, with a bit cut out it’s going to be even more difficult this time.” It made me feel great. In my head I said, “F*#k you, insensitive bitch.” Outwardly, I laughed, in shock I think!

Before I had breast cancer, I didn’t like my boobs. I felt they were too small and not very well shaped. I would have considered cosmetic surgery. Now I love my boobs and would not change them in any way unless to returned them to ‘normal.’ When I was first diagnosed, the doctors recommended a mastectomy and one particular doctor felt that the best option would be to have both breasts removed as a long term preventative measure, considering my age. They would have done a reconstruction at the same time so at no point would I have been without breasts. Still, after reading all the literature I decided neither was an option for me. I was 24 years old; having my breasts removed was a last resort only for me. I was only just coping with the notion of having cancer; prolonged surgery and post surgery care during chemo was never going to be an option if it could be avoided. My primary doctor, a woman, supported my decision. I wanted to deal with it in small stages. I would consider the bilateral mastectomy in the future. It does reduce the risk of secondary cancer dramatically so I may have this operation yet. Hopefully it will be at a time when I am ready to deal with it and not forced by a reoccurrence.

Cancer scars your mind and body in so many ways some visible and some not. I am a different person. I have different values, philosophies and opinions about what is important in life. I belong to an elite group that have had an illness they didn’t know they had until the treatment for it made them sick. I’m tattooed like a prisoner of war, societies war on cancer. I’ve had my mortality slapped round my face and it has caused me to re-evaluate everything I had learned about existence so far.

Chapter 5 – Coping With Things My Way

During my radiotherapy I began to find my inspiration in life again. Despite being pretty much housebound all summer, I had not played my guitar much, having no real enthusiasm for it. I had not written a lyric or poem, prose or play since ‘The ‘C’ word’. It was time to write a song, time to express some of this pent up emotion. The lyrics follow:

Twisted

I am twisted up inside
With these thoughts I can’t abide
I’m bitter now
And don’t know how
To make the pain go away
I want to see things right
To end this useless fight
Don’t wanna scream
But just can’t seem
To stop myself

Don’t you see?
You can’t stop me
‘til I can forgive

Have so many thoughts to clear
So that I’m not drowned in fear
I’m haunted by
And can’t untie
The thing that twists me up inside
I am lost and I’m alone
Would it hurt you just to phone?
I’ve been in hell
And I can’t tell
If part of me has stayed there

Don’t you see?
You can’t stop me
‘til I can forgive
‘til I can forgive
‘til I, ‘til I can forgive

At the time I was feeling isolated and missed my previous social life but felt so changed and angry that it was difficult to approach my friends. I knew I needed to stop letting the dark thoughts creep in and forgive life for doing this too me in fact I needed to find a way to be happy, content with today. Being bitter about what has gone before is not the way to do that. I knew it was necessary for me to forgive those people I expected more from and understand that my expectations were probably misguided in the first place. All of my close relationships with my immediate pier group had dissolved, if I was to get them back I had to let go of the anger and kill the untouchable, indestructible Jo routine.

The song, for me, is a primal scream in its composition and delivery so I don’t have to be angry in my heart and in my daily life anymore. I cast it out and turned it into a beautiful song I play in public regularly. Sometimes I say what the song is, most of the time I let people interpret it however they want. I’m happy if they are entertained for just a moment.

After playing this song for a while I thought it was necessary to write another one in counter balance. A song that explained how I felt with out the bitter taste. I affectionately named it:

Words ‘n’ Time, Time ‘n’ Words

There’s a picture of a place where I wanna be
It’s a picture of peace and tranquillity
A place where there’s hope and a future for me
But I can’t find it on my own

Your words and your time my mind will feel fine
Your words and your time

It’s a beautiful place with energies old
Laughter and love and stories told
Of hope and happiness and a future for me
But I can’t find it on my own

Your words and your time my mind will feel fine
Your words and your time

The trees are strong and the light it shows
My family there and my heart it glows
And a future grows yes a future for me
And I can find it on my own

This song is loved by my friends and whenever we are having a party or are at an open mic night it is requested and they sing loudly in the chorus. Consciously, they are not aware how much I needed their time and words during chemo. A text, call, visit, anything to distract me from myself for just a moment. It doesn’t matter anymore, all is forgiven, I have found that proverbial happy place and I am writing from it now.

The next bit of writing grew over a month or two the first verse was a scribble in my notebook. The next three verses were a separate poem I had worked on a little already. I was at a rehearsal with a Drum ‘n’ Bass act I was working with, put the two together and wrote them into a song they had written with a melody I created. That song has been put on the back burner for them now. So I rearranged it for acoustic guitar and vocal and perform it solo regularly.

Hades Game

I’ve fought you and I’m tired now
I’ve won yes and I don’t know how
It took everything. I am empty
Blank canvass. Now I am free

Do you know how I got here?
The haze lifted I’d lost a year
And life had changed beyond belief
To start again to my relief

I was lost in Hades game
In stasis form with out a name
Preyed upon by man made ill
Saved again by man made pill

Oh the maze inside my head
The sickness in that colour red
When will I be able to look at it at all?
Leap that mountain break that wall

In between writing ‘Words ‘n’ Time’ and ‘Hades Game’ a year after diagnosis, there was a significant happening in my life. I decided to leave my husband. I went to live with my mum. I did this because he was not truly there for me when I needed him. I was devastated and did not want the marriage to end but could see no other option if I was to retain my self-respect and dignity. I felt I had given him a lot of support with his own issues throughout our relationship but when it was time for him to be strong for both of us he didn’t have the energy or inclination and was easily distracted. It was time to focus on my self and to some how restore the self-confidence that had been poked, prodded, poisoned out of me. This all happened while I was teaching three days a week and waitressing three days a week to try and pay off debts and save money. Stress free recovery time huh?! I’m not complaining. I have no regrets. It was the right thing to do for both of us. He didn’t argue. We are still friends.
I returned to my maiden name within a month of separating. I refer to this briefly in the lyrics above ‘in stasis form without a name’, trying to describe my feelings of abandonment at that time. There is no going back. I harbour no bad feelings, will always love him for the good times we spent together and hope that we can be true friends to each other in the future.
Since then in an attempt to find some love and happiness I have one failed relationship with a man who could by no means handle me and despite being intrigued, again did not have time nor inclination to try even though he’d made promises at first. Again I’m not bitter. I’ve learned a lot about myself and have recently found some wonderful friendships that far out way any loses in romantic attachment.

Chapter 6 – Up To The Present Day

I received the all clear. A disappointing day. I didn’t tell anyone about it as I didn’t want to build it up or turn it into an issue. Then when it came, part of me was hoping there would be fire works, a brass band and award ceremony as I stepped out of the hospital. There wasn’t of course. I hadn’t told anybody I was going to the hospital. I cried hard that night after work, not really tears of sadness more relief than anything else.
I have to take hormone drugs every day for the next four years and have an implant every three months as a preventative measure. They stop all ovarian function so that there is no oestrogen available to fuel tumour re-growth. The side affect is basically the menopause. Yes I am 26 years old and suffering menopause symptoms. It just keeps getting better! I am supposedly temporarily infertile but must still use contraception just in case. I asked my GP what would happen if I fell pregnant. He made some flippant remarks about, ‘probable miscarriage,’ ‘foetal gender issues’ and ‘not recommending continuing such a pregnancy.’ I left, once again, quietly devastated.

I have missed all my hospital appointments lately having been distracted by work and life. Perhaps on a subconscious level I avoid them, admittedly I don’t like hospitals! I am looking after my self. My life is stress free at the moment. I don’t have anywhere to live yet, I’m staying with friends and family. I sing at the weekends at pubs and clubs but have no other job and I don’t want one. I still owe lots of money for household bills during my treatment, they cannot get blood from a stone, so I don’t stress about it. I love spending time with my family and friends, laughing, walking and playing games. I pursue music playing solo and with different bands and do street entertainment. I’m going to use this time I have now to write another play and compile my life’s poetry collection in the hope that something might get published. I think I have polished my acting skills to R.S.C. level. To see me and chat to me in an ordinary situation you would never guess I could have written this book. I am the girl every one knows as a good laugh, easy going and always smiling. Most people would say they have never seen me in a bad mood and have never seen me cry. My students would say I am a strong and assertive teacher that won’t take any crap but laughs easily and is always encouraging. My colleagues at the restaurant would tell you they have never seen any one work harder and they ‘never mind working with Jo’. I have pretended, convincingly to be all those things when in my soul I’m hurting so much. Why should anyone else have to be burdened with that? Life is hard for all of us and our struggles are relative. I might be falling to pieces inside but only my nearest and dearest will know this and only if I tell them. In private I write and sing songs loudly and my book gets scribbled in. Outwardly I will play whatever role is required of me and seem like I don’t have a care in the world. This is how I cope.

I am not afraid of the future. I am fundamentally strong, I know this now. I am in no hurry. I enjoy every moment of every day and try really hard to be a good person. I have lowered all my expectations of myself and others, mainly to alleviate any pressure I had put on myself to, ‘achieve’ in material terms. I am proud of myself for having got to this point feeling happy and confidant that the future for my family and I will be a positive one. I have also recently found true love. I’ve found a caring man who knows exactly what I am about and still wants to be with me. He understands the bond I have with my immediate family and close friends and wants to share in it. I am so pleased by this as I have felt distinctly under appreciated by the opposite sex and have been wondering if I am attractive in any way!

I still smoke. I hear your sharp intake of breath in disgust. I have tried to quit but there is a strong demon inside saying, ‘you can do what ever you like darlin, you’ve been through enough already!’ I know I should quit, Jesus I don’t want chemo again. But I’ll do it in my own time and I’m not going to beat myself up about it in the process, why should I when my mam can do that for me?……just a joke. I’m happy and I’m dealing with the demons in my own way.

So my stuff has all turned out ok in the end but what about this cancer thing hey? This is not just my problem. It’s humanities problem. My cancer was not caused by smoking specifically. There were definitely environmental affects on it’s arrival. This is acknowledged by the medical profession generally. E numbers, pesticides, pollution, the depletion of the ozone layer, nuclear research, genetic modification, mobile phone technology, the pill, diet, lifestyle. They don’t know why we get cancer or how to cure it. Reassuring huh?
I remember during my G.C.S.E. history I had the misfortune of seeing a documentary about the first trials using radiation to treat cancer. They were giving patients, with no other hope, massive doses. They were coming out with hideous burns and terrible disfigurement. This was only forty years ago. I watched my sister receive the largest dose ever given to a child and was truly grateful to those people that had suffered before her as they had contributed to the success of her treatment. The hormone drug I take daily has only had trials for 10 –15 years. My point is the treatment of cancer is a wildly imprecise science and maybe all the answers do not lie solely in the medical profession. Society needs examine the root of this evil and acknowledge that mind, body and spirit are involved in it’s cause and cure. I believe that education is the key. If we were taught more about our bodies from a younger age. If we were taught how to eat a balanced diet, why we should eat a balanced diet and how and why we should exercise daily. If children were taught how to grow food organically or how to prepare food from fresh, or which foods have medicinal qualities or high vitamin content surely we would grow up healthier. Most children these days make no association with food and growing things. Food comes via mum from supermarket. If we were filled with respect for our bodies and our lives maybe we wouldn’t smoke and drink excessively. Well that’s my rant over with. I’ve said my political bit. I hope to pursue this in the future by finding a way to introduce ‘health studies’ into the curriculum from the age of 5.

I also hope to pursue this book. Maybe it will become a play I can tour for education and entertainment. I really hope that you, the reader have got something positive out of hearing me moan. I feel better anyway. I think you call this kind of an experience ‘closure’. There was a time when I thought I would never be able to face writing this. I’m really glad I did!