The Cancer Survivors Club (18 page)

I got myself dressed, and before I left a radiographer took Teresa and me along to the simulator room to show me where I'd go the following week for my radiotherapy.

When we got outside, the relief was so massive I burst out crying. Teresa gave me a reassuring hug and we headed off to find somewhere nice outside in the sun for lunch. Afterwards, I felt much better and was pleased how well I'd coped. If you're reading this and you suffer from claustrophobia, I can assure you it's not that bad
–
if I can do it, so can
you.

9 June
–
I had a lovely relaxing weekend in Minehead, enjoying the company of friends and beautiful sea views and walks. It was just what I needed before I began my radiotherapy treatment.

18 June
–
The day had come to start my radiotherapy. I was to receive four minutes per day, five days a week. I was due to have four weeks like this and on the fifth and final week finish with a double dose. After the tenth day, I was feeling really ill with my allergies, so arranged to see a doctor. I told her I wasn't sure I could go through with any more radiotherapy treatment. She told me that, while she understood it was hard for me, I must continue. I came away feeling even more upset than when I arrived.

Over the weekend, I decided I needed to take a break from the treatment and phoned Oncology on the Monday. They told me the machines were broken, but would be fixed by Tuesday, when I must come
in.

On Tuesday morning, I phoned the Radiotherapy Department again and said I couldn't make it. They told me that this was the last day I could have off without it affecting my treatment. I was told if I cancelled any more appointments I would have to start the course again. They reminded me that, if I continued with the treatment, I would have a seventy percent chance of not getting breast cancer again. However, if I missed any more sessions, the treatments I'd had already wouldn't be effective and it would have been a waste of
time.

This was the hardest decision I've ever had to make in my whole life. I needed to make sure I was doing the right thing. I phoned the Penny Brohn Cancer Centre. They obviously could not advise me but suggested I read a book called
Your Life in Your Hands
. I had already tried to find information about stopping the radiotherapy halfway through, without any success. Coincidentally, I already owned the book, so sat down and read it the whole way through. I then did some meditation for a while and came to the decision that I was going to stop having radiotherapy. I kept asking myself what if I was wrong. I sat down in the kitchen and wrote a list of reasons for stopping and soon became convinced my decision to stop was the right
one.

During the next few days, I decided I would attend some of the Penny Brohn Cancer Centre courses. I saw my doctor as I knew I'd need his approval and some forms signing. I explained about stopping the radiotherapy and he said I was one patient who knew my body better than anyone. He felt sure I'd done the right thing for me. In fact, he suggested that I contact the Penny Brohn Cancer Centre, and I said, ‘Well, you won't mind signing these then,' and presented him with their forms.

18 July
–
I got myself measured up for my prosthesis. When I saw what they looked like, I was so relieved and pleased that it was small, soft and light. I had expected it to be heavy as they used to be years ago. I then went shopping for some new bras with a pocket for my prosthesis and got home feeling invigorated and like a new person. I was now on my way to feeling more confident and looking forward to the future.

It took me two years before I could go back to work, which was mainly due to the difficulties I'd had with the radiotherapy treatments and my allergies. During the two years I was at home, I carried on working on my self-development, which was proving very worthwhile. I read loads of self-help books, received art therapy, healing, reflexology and other alternative therapies from the guys at the Penny Brohn Cancer Centre. I'd always been interested in alternative medicine, and the cancer centre courses and healing really aided my recovery.

Six years after my operation, I'm pleased to say my consultant shook my hand recently and said, ‘You did know your body and knew what was right for you
–
congratulations.'

I am still working full-time as an accounts manager, colour counsellor, healer, teacher and colour life coach; I love keeping busy. I also like supporting people with breast cancer on the
www.CancerInCommon.com
online forum.

Finally, I have now been completely discharged from the breast care centre after my mammogram in April.

I want to thank everyone who has helped me, especially my family, Margaret and Teresa, Mitzi and Pixie, my doctor and consultant, and all the staff at the Penny Brohn Cancer Centre.

I was encouraged but not surprised to read that scientists have developed a breath test, which detects cancer before patients suffer any symptoms. I say I'm not surprised because for years the police have been able to detect the vintage of the wine I've been drinking, by my simply blowing into a bag. In fact, by looking at a swab of my saliva, doctors can obtain my DNA and work out who my ancestors were. Not wanting to show off, but just one whiff of my wife's breath in the morning and I can detect what she had for dinner the previous night. Actually, best I change the subject
–
divorce comes to
mind.

I had one reader email me, asking if I'd explain in detail the medical terminology I use. So, for her benefit and wanting to prove I listen to my readers
–
a little like David Cameron listening to his electorate
–
here goes. Saliva is a clear liquid secreted into the mouth by salivary glands and mucous glands; it moistens the mouth and starts the digestion of starches. Divorce is the legal dissolution of a marriage. Hope that makes sense, Mrs Copper?

With the ability to identify and learn so much about us just by poking around in our mouths, I'm surprised credit card companies haven't got us licking a machine when shopping. Forget ‘Chip and Pin', how about ‘Lick and Pay'? I might write to Barclaycard with my suggestion. Since DNA is unique, credit card companies could soon identify us and save the consumer from remembering yet another pin number or password.

Again for the benefit of Mrs Copper
–
DNA is a nucleic acid that contains genetic instructions used in the development and functioning of all known living organisms and viruses. Please, Mrs Copper
–
don't confuse this with a computer virus, like you confused junk email (Spam) with chopped pork and luncheon
meat.

These scientists have developed sensors that can spot chemical signs of lung, breast, bowel and prostate cancer in a person's breath. They believe further work could lead to a cheap, portable ‘electronic nose' capable of diagnosing cancer at an early stage. Now I'm not sure I'd be capable of that. My wife's previously eaten tofu is about my limit.

A team of scientists carried out tests on 177 volunteers, some healthy and others with different types of cancer. This study showed that an ‘electronic nose' can distinguish between healthy and malignant breath. It can also differentiate between the breath of patients with different cancer types. If this is true, it could save millions of lives.

So, if your nasal senses aren't as efficient as mine, or until this ‘electronic nose' is launched, do me a favour please
–
go and see your doctor if you feel unwell or notice any unusual lumps or bumps; feel free to blame
me.

At the age of fifteen, I'd been diagnosed with diabetes, the sort that needed daily injections. I also needed a carefully controlled diet. Not ideal when I was experiencing the usual teenage problems; I'd just discovered girls. Despite the setback, I got on with living my life. I left school, got a job, then another, and eventually managed to keep a girlfriend for longer than five minutes.

To move the story forward, things appeared to be going well. Now in my late twenties, I'd got engaged to Sharon and eventually got a job that I enjoyed. I was still also managing to keep my diabetes under control.

Unfortunately, out of the blue one day, I fainted. I then continued to have fainting spells regularly and felt quite unwell. After several fainting episodes, Sharon convinced me to see my doctor. After explaining my symptoms, it was naturally thought diabetes was the cause of my problems. He decided to refer me to one of the diabetes specialists for further tests.

Two weeks passed and, despite looking after myself a little better as the specialists had suggested, I started to feel even worse. I had also now developed a rash so went back to see my doctor again. I saw a different doctor this time, as my usual doctor was away. He examined me, checked my eyes and looked at the rash. His thoughts were that it might not actually be the diabetes causing the problems, and he made an appointment for me to visit the Haematology Unit the following day. I remember the appointment quite vividly.

After the tests and a very painful procedure with a large needle, I was told I'd need to stay overnight at the hospital. They neglected to mention that I had Acute Myeloid Leukaemia, which I didn't find out until I was ushered into an isolation room; oh, and asked to sign some consent forms.

How to explain the story now is difficult, as the chances are most people reading this will be familiar with the usual side effects some cancer treatments can cause.

These included hair loss, which for me was a struggle as I loved my long hair. I had big hair, think Duran Duran style, sad but true! Other problems included trouble sleeping, poor concentration levels and having a Hickman line fitted.

I was also worried about the stress and upset I was causing my family and friends. I was very concerned by the awful news that the treatment would make it unlikely that Sharon and I would be able to have a family. Within just two hours of receiving this devastating news, I was asked to produce a sperm sample for storage. Having to retreat to the hospital en suite shower room to fill a plastic pot was far from appealing. I wish I could say I was successful and filled it to the top; however, with all the will in the world, the romance was missing
–
nothing happened.

Anyway, for six weeks, I lay in bed having treatment. My hair started to fall out, which was making me resemble Buster from Bad Manners. I had drips bleeping away and my wee being measured out in cardboard cups. Sharon sat with me every day and did her best to keep me going. We had some very funny moments together, which really helped me get through my treatment.

Once, the television in the corner of my hospital room was so loud it made it difficult for us both to actually hear each other. The theme tune from
Top Gear
was blasting out. Spontaneously, both Sharon and I started playing our air guitars and hummed for all we were worth, only stopping when the laughing got so loud. The nursing staff came rushing in thinking I was crying with pain; they didn't believe me when I said they were tears of laughter.

Eventually, my treatment was reduced and I was allowed home. I still had to come into hospital daily; unfortunately, at that time, our car was proving very unreliable and it finally broke down on the way in one morning. A breakdown driver soon arrived in the dirtiest truck imaginable and said he'd have to take our car to a garage; all I was concerned about was all the germs. I still had to be careful as my immune system was low after all my treatment, making me very prone to infection. Anyway, I had no choice so asked if he could drop me off at the hospital. On the way, we started talking about my cancer and the various treatments. As we pulled up to the hospital, he said a friend of his brother had the same but had died, ‘which was sad because he was a good customer'. Not really a story I wanted to hear at that point.

There is humour to be found in most situations and I always felt it was important to allow myself to laugh. Sometimes it helped me to cry and scream; in fact, being selfish at times helped me, too. I hoped everyone understood it wasn't personal.

To bring my story to an end, I am now happily married to the lovely Sharon and we have a son and daughter conceived naturally with no need for test tubes or plastic pots. I also now work full-time at a college.

There are still times when I worry or get depressed, but I only have to think back and realize the worst is behind me. So, if you're reading this going through treatment or getting over cancer, stay positive and live your life to the full. It can and will get better, and remember you are not alone, people like me are thinking of
you.

I was born in 1958 and raised in a town called Prudhoe in Northumberland. I have two brothers and a sister. My dad is still alive but unfortunately my mum died nine years ago from lung cancer.

My illness originally came to light in 1981 with the appearance of a lump on the right side of my neck. It was the size of an egg and I was able to move it about as it didn't hurt. It caused absolutely no pain or discomfort until one morning in August. I got up and told Mum it had started to feel very painful. She instantly sent me off to see the doctor. It was suggested I visit my dentist, who initially thought it was one of my wisdom teeth coming through. After an x-ray, the dentist sent me to a dental hospital; again, nothing could be found.

My doctor, after re-examining me, couldn't find anything either so suggested I have yet more x-rays. However, this time, they were going to inject a liquid into the lump, which would improve the image on the x-ray. Hopefully, this would allow them to see more. They put a needle attached to a tube into the saliva duct in my cheek. Doctors then pumped iodine into my neck and took images of my neck, throat and nose. This whole procedure took around an hour but felt much longer.

In October, I went to see a consultant with my mum. I was told they still didn't know what the lump was or what was causing it. We were asked to go along to Newcastle General Hospital for a biopsy to be taken. My appointment was in January of the following year. At the time, I was working as a domestic assistant at a hospital for the mentally handicapped.

I told my boss I was being admitted to hospital on Tuesday for a biopsy. I explained that I would have my operation Wednesday, recover Thursday and be home Friday. This would mean I'd be back at work the following Monday.

Anyway, I ended up staying in hospital for two weeks. They removed the lump and found one of my lymph glands was blocked. After a few days, they did a biopsy on my ears. The second week, they did another biopsy but this time taken from my
nose.

I was never told the outcome of any of the biopsy results and I never thought to ask; but I was still very young at the time and left this to my
mum.

On leaving the hospital, I was given an appointment to meet with the consultant a few weeks later, and both Mum and Dad came with me this time. The consultant explained I needed some radiotherapy but, before they could do this, all my teeth would need to be removed. It was explained that the radiotherapy would rot my teeth and they would eventually fall out anyway.

At this stage, I still didn't have any idea what was wrong with me. The shock of being in hospital and the news about the radiotherapy had caused my mind to go completely blank. I'd forgotten to ask
–
I know this sounds crazy. I just went along with everything I was told, as I trusted Mum and Dad and they appeared to understand the situation. I went back into hospital in February and on the Monday morning I was taken to theatre where all my teeth were removed, including my wisdom teeth.

At visiting time on Monday evening, my parents and a couple of their friends visited me. I was still feeling pretty groggy and my gums were bleeding. Dad gave me a package with ‘Get Well' written on it. On opening it, I was gobsmacked
–
excuse the pun
–
to see it contained a family-size bag of salted peanuts. He looked at me and said, ‘Something to enjoy when you get your new teeth.'

The ward sister thought it was a bit cruel to start with, but eventually saw it was a joke, done simply to try to cheer me up, and it worked.

The next day, I was measured up for a mask. It was made in two halves; the back was made first then the front. This was to protect my nose and other parts of my face from the radiotherapy. The day after the mask was measured, I was allowed home. We had an Alsatian dog called Major and when I got home he followed me everywhere. If I got up to make a cup of tea, he would be right beside me. If I went to the toilet he'd sit outside, and if I had a bath he would cry and scratch at the door until I let him in. When I mentioned to Mum I couldn't move without him being there, she said he obviously sensed I wasn't well and was trying to protect me. It's amazing what animals can pick up
on.

A few weeks later, my radiotherapy started. I had to have it five days a week for four weeks. I felt a bit like a monster wearing my mask. The back half was screwed to the table and the front half was then put over my face and fitted to the back half with screws, preventing me from moving my head. A syringe was then put through a space round my mouth for me to breathe through. It was awful, and I felt very claustrophobic. On top of the mask, lead blocks were placed from my chin down so my throat wasn't affected by the radiotherapy. Stupidly, I still had no idea what was wrong with me. I must have been in denial or just a very ignorant young
girl.

I wasn't allowed to wash my face or neck while having the radiotherapy for a further four weeks afterwards. I was only allowed to use talcum powder. Mum used to wash my hair over the bathroom sink. After each session, I would go home and have a sleep, then I'd get ready to go out for a few drinks and a game of bingo.

I wasn't a pretty sight travelling on the bus five nights a week to have an evening out with my friends; but I didn't care. If people didn't like seeing someone with no teeth, scabs and a spotty face, they could always look the other way, I thought. I knew whatever was wrong with me wouldn't last forever. Eventually, my treatment came to an end. I was worn out but it didn't stop me going out and trying to enjoy myself. Major still continued to follow me around the house like my shadow, bless
him.

I got my new teeth fitted in August; they felt very strange at first and I really struggled to get used to them. They kept falling out whenever I ate; I also felt as if everyone was looking at me all the time. I was more self-conscious about my new teeth than I was about my spots and scabs. I had to get used to them quickly, though, as I was due to go on holiday to Benidorm in September with some friends from work; a holiday that I was really in need of by
now.

On returning from holiday, I went back to work. At last, everything in my life was starting to get back to normal. I got back into my routine of being a domestic assistant, a job I really loved.

The last couple of months of the year went by with no problems. I was visiting the hospital regularly for check-ups and everything was going
fine.

My sister Carol had moved to Bristol with a friend of ours called Jane. Carol had split up with her boyfriend and needed help to run the flat, so asked if I would like to move in with her. I said yes instantly. A new start and a new life was just what I needed.

In the April, I moved in with them. I still didn't know exactly what my illness had been at this
time.

Unknown to me, Mum had spoken with Carol on the phone and asked her if she could tell me what had been wrong with me. It transpires I'd had a form of cancer called Anaplastic Carcinoma, which was located in the back of my nose and throat. The news still didn't really sink in. Looking back, I must have been in denial or just plain stupid for not asking. Don't answer
that!

I kept plodding on with my life as though nothing was wrong with me, even though I was still having check-ups at the hospital every three months. These check-ups went to every six months and then eventually annually. Finally, they stopped totally and I was discharged.

Not long afterwards, I met a nice guy called Jerry. He was helping with a disco at a friend's twenty-first birthday party. We started seeing each other and after three weeks he moved in with me. In the February we got engaged and in May we got married. I remember after the wedding service and reception Mum whispered to me, ‘Well, honey, you got your fairytale wedding.' It was a great day and the proudest and happiest day of my life
–
until December a couple of years later. This is when I gave birth to our son, Christopher, and suddenly my life was complete, or so I thought.

Jerry and I became grandparents to Liam. We also celebrated our silver wedding anniversary two years ago, which for us was more of an achievement than
most!