The Cancer Survivors Club (14 page)

After about two weeks, I had what I describe as a funny turn. I was not really aware of my surroundings all morning and my breathing had rapidly deteriorated. A crash team soon arrived and I was given oxygen; there was an air of panic in my room. The crash team managed to stabilize me but wanted me to be admitted to the Intensive Care Unit (ICU). However, because my resistance to infection was at its lowest point, they couldn't take the chance of taking me out of isolation. After a while, I had an x-ray, ECGs, scans and a heart echo test. They concluded my heart had been damaged by the chemotherapy and some of the tablets were affecting my kidneys so they weren't functioning correctly. This explained why I had retained so much fluid. They didn't seem overly concerned and told me that, as I recovered, got fitter and started moving around, the fluid would eventually disperse. Over time, my blood counts gradually improved, and on 9 October I was discharged with a large bag of pills to
take.

I still had what the doctors called oedema, which was an excess retention of fluid. Added to this, I still was not very mobile. I needed a wheelchair to leave the hospital; Mark managed to get me into the car. We drove straight to our new home in Devon. Mum and Dad and all our children were there to greet me, so it was a very emotional homecoming.

I still wasn't well and Mum was really worried; I had no interest in anything. I was not eating properly and it was an enormous effort just to get upstairs to bed; breathing was still one of my big problems,
too.

It was my birthday on 11 October and I didn't even open my presents, I just felt so ill. Because the doctors had said I'd get better, I plodded on thinking it was just a matter of time. By this point, I now weighed a massive eighteen stone. I had put on over two stone while in hospital. I'd been home for just five days, and was busy trying to help get the house sorted, when I had my first follow-up appointment. Mum had driven me there that afternoon and, while I was waiting to see the consultant, I rapidly deteriorated. I was taken to a side room in the Haematology Ward and the duty doctor explained to Mum that it was not looking good. Mark was away at the time. By the time he arrived at the hospital, doctors wanted to get me into ICU; however, there was only one bed available and two patients, including me, needing it. The staff nurse on the ward tried her best to slow down my breathing. She eventually thought I was going to have heart failure and called the crash
team.

The next thing I remember is being raced through the hospital with what felt like a black bag over my
face.

Some three weeks later, I was still in ICU. I was on a ventilator and had been since my last memory of my face being covered. Apparently, the doctors weren't holding out much hope for me in the first few days. At one point, they even talked about turning off the life-support machine. Slowly, I improved but I contracted a horrendous infection in my central lines and other tubes; these were soon taken
out.

Mark and Mum were still being prepared for the possibility that I might not survive. I spent a total of four weeks in ICU and a further two weeks on the Cardiac Ward. The conclusion was I'd had heart failure due to the chemotherapy. My heart was beating way too fast and not sufficient for my lungs, which had filled with fluid. The ventilator basically stopped me from drowning. While I was in intensive care, the doctors slowly managed to get most of the fluid out of my system. I lost a total of four stone in four weeks; now that's what I call a
diet.

When the sedation was lifted, I realized I was unable to move; I couldn't even roll over in bed or dress myself. On the ward, I had to learn this all over again, like a baby learning to walk, before I could be discharged. I was desperate to go home as by this time I was actually feeling better than I had done for months. Being an extremely determined person, just four days after being admitted on the ward, I took my first couple of steps with a walking frame. After that, there was no stopping me; before they knew it, I was walking to the end of the corridor and
back.

I was finally discharged just before Christmas, but still needed the walking frame.

Mark moved the bed into the lounge so I didn't need to worry about climbing the stairs.

We had most of the family stay with us over the Christmas period. I set myself the goal of conquering the stairs by then, which I somehow achieved.

All the doctors have been amazed at my recovery; they call me ‘miracle lady'. I'm still a bit weak but am walking unaided, can do most things for myself and am leading a fairly normal life. I have no breathing difficulties now and, even better, it seems the cancer is still nowhere to be seen, which my last scans confirmed. I have to take rather a lot of tablets but I can cope with
that.

Yet again, good things have come from me being ill, as I believe they always do. Mark and I got married last summer; life is too short to wait any longer. I have made a wonderful new friend via the Lymphoma Association website. I started logging onto their site during my treatment. I needed information and was desperate to talk to people who knew what I was going through. It's not a busy website and sometimes it's weeks before there's anyone else online, too. One night a woman appeared online and we got on really well. Apart from the obvious subject of lymphoma, we found we had so many other things in common. She also lives quite close so we now often meet up and have a good gossip. She was very supportive throughout my treatment and we met for real in ICU, so she saw me at my worst.

Where we are living is so idyllic and I love our house. We almost have our own little valley; we can't see any other properties and no one can see
us.

The children are going to the same primary school that I went to and have settled in well. We live just fifteen minutes from all my immediate family.

Someone somewhere has really been looking out for me; I feel very humbled by that knowledge. The support I received from family, friends and complete strangers was amazing. I feel very privileged to have received that, and despite being ill I am a very lucky lady. I now want to try to help others, to repay those who helped me when I was
ill.

Visitors are banned from taking flowers into our hospitals. We're told it reduces the chances of patients suffering a slow and painful death, should they contract the highly contagious ‘wilting petal' disease. The ban was enforced despite the Department of Health issuing a statement saying, ‘There's no evidence of flower water causing an infection.' What a surprise
–
I often thought people confused a vase containing flowers with a water
jug…

Now, some hospitals have banned homemade cakes because of health and safety concerns. Officials claim sponge cakes contravene guidelines, blaming the ban on strict rules over packaging and labelling.

What the Department of Health and Safety has failed to notice, due to its obsession with creating legislation on our every activity, is that it is breeding a new highly contagious disease. It's far more dangerous than any ‘wilting petal' disease. It's called moron's disease. I'm not talking about the city in Argentina; I'm talking about people of subnormal intelligence. That's politically correct speak for idiot, thick or stupid.

Now, when we purchase a hot drink, we need to be told we could burn ourselves. When crossing a road, we have to be told which way to look. The funniest warning I read was in a car handbook, which stated, ‘For safety reasons, carry out engine adjustments while the vehicle is stationary.'

The compulsive preoccupation with making us all healthier and safer is actually creating an unhealthy and unsafe nation of idiots, who are becoming unable to think for themselves.

Over 7,000 people with moron's disease attended Accident & Emergency last year to have cotton buds removed from their ears. That's more than the number of people who had accidents with razor blades. The official explanation is razor blades have a warning on the packet, cotton buds don't.

Ready meals have instructions on both opening and cooking the contents, because six out of ten people have stabbed themselves when trying to open a ready meal with a knife; and that's with instructions.

I was in a meeting this week with the marketing team of ‘Above and Beyond', a charity that raises and manages funds for all nine hospitals in the University Hospitals Bristol NHS Foundation Trust. I jokingly suggested they put a leaflet under the pillow of all the patients, a little like the flyers we get stuffed under our windscreen wipers in car parks. I was told they'd need to be laminated, because of, you've guessed it, ‘Health and Safety'.

However, it's OK for an uninvited stranger to stuff a leaflet through my letter box, advertising a ‘No win no fee' service, should I be the victim of medical negligence. Yet, if they slip on my garden path, they're entitled to claim damages from
me.

Relax, before you get stressed because you weren't warned this column could increase your blood pressure. I have a solution
–
I have a vaccine for the 2.7 million people who visit A & E with moron's disease each year. It's called common sense.

Finally, I'd like to congratulate you on your bravery in reading this newspaper today.

To think, without any words of caution you risked paper cuts, ink coming off on your hands and me waffling on about morons.

My illness started when I was just ten years old. I was staying over at a friend's house one weekend. I woke up on the Sunday morning being sick and I couldn't stop; it was really embarrassing. I went home assuming I'd picked up a bug and felt well enough for school by Monday.

As the weeks drifted on, I continued being sick, which by then had become almost a daily event. Mum eventually took me to the doctor's, but they were unable to find anything wrong. Mum kept wondering if I was being bullied at school, which wasn't the case. I carried on going to school as normal but was still being sick on a regular basis. To add to this, I started getting severe headaches, so Mum kept taking me back to the doctor's. Eventually, I was told I was having ‘migraines of the stomach'.

My doctor prescribed some tablets; however, my symptoms continued and actually got worse. Then I began to experience pains in my lower back and struggled to keep my balance. I wasn't even able to walk in a straight line without stumbling all over the place. It must have looked like I was drunk, except I wasn't even old enough to drink alcohol!

Despite my growing list of problems, nobody believed I was genuinely unwell. My symptoms continued and I got progressively worse. The constant sickness meant I was unable to keep any food down, which in turn meant I lost a lot of weight. Soon after this my speech became slurred and I was now looking and sounding like a drunk. At the time I guessed this must be what a hangover felt like: now, sadly, I've first-hand knowledge!

Most mornings, I'd visit my doctor, yet they were still unable to diagnose what was causing my now numerous problems. Still they insisted I was simply having these ‘migraines of the stomach'. My symptoms and regular doctors' appointments continued for several more months. I'd see the doctor before school then spend the rest of the day acting like the local drunk; it felt like I had the worst hangover in the world.

Eventually, after numerous appointments, I was referred to the hospital. By this point, I was really ill. I was constantly being sick, slurring my speech and unable to walk properly. My ‘migraines' had become so bad I could barely lift my head off a cushion, which I used to keep the light out of my eyes. Just when I thought I couldn't feel any worse, yet another symptom appeared: one of my eyes started to turn in. I was forced to sit at the front of the classroom in order to see. I even needed to cover my bad eye when watching television as it hurt so much. The combination of all these symptoms was really starting to affect my life
now.

Coincidently, the night before my hospital appointment, I watched a television programme about a young girl, who was around my age. She'd been having similar symptoms to me and was diagnosed with a brain tumour. This really frightened me. I remember asking Mum if this could be causing all my problems. She dismissed the idea instantly, explaining I'd not been experiencing projectile vomiting like the young girl had. I was unable to watch the rest of the programme, my imagination getting the better of me. I went upstairs to bed and tried to forget about my hospital appointment the next morning.

Mum and I arrived at the hospital early and, after a short wait, a nurse performed various tests. Then we had an agonizing wait to see the consultant. The consultant tested my reflexes and checked my eyes. He then startled me by saying he needed a second opinion. This naturally frightened me; my mind went back to the girl I'd watched on television the night before. Eventually, the second consultant arrived and looked into my eyes. I was then asked if I'd wait outside while they discussed my symptoms in more detail.

After more waiting around, they explained it would help them with my diagnosis if I had an MRI scan. This would be done at a different hospital. I felt fine about having the scan, until I saw the size of the massive machine. A nurse wanted me to lie on a moving couch, which would slide inside a tunnel; I was really terrified by now. After discussing it in detail with the nurse, she convinced me I'd be fine and able to cope with any possible claustrophobic feeling, and she was right.

Once the scan was over, the consultant called me into his small office. I had both Mum and my stepdad with me for support. Before I'd even had time to take in my surroundings, the consultant announced, ‘I'm sorry, Abbie, but it looks like you have a brain tumour.'

I can still picture him telling me as if it was today. Initially, I was relieved; at last they'd found out what was causing all my problems. I couldn't think properly as thoughts about dying raced around my head. I had no idea if they could cure me or get the lump out and I'd never felt my heart beat so fast. The consultant explained an ambulance was on its way, as I needed an operation.

This was to be done at another hospital that specialized in neurosurgery, and the operation was scheduled for the following morning.

That night, Mum went home as there was nothing more she could do. It was an awful feeling being alone in hospital, knowing I had an operation the next day. As you can imagine, I didn't sleep much. I sat around watching videos and chatting with the nurses.

Mum and my stepdad arrived early the next morning and the three of us talked with the surgeon. Mum signed some authorization forms and then soon enough I was being wheeled down to theatre. Almost twelve hours later, I woke up in the High Dependency Unit (HDU). I'm told the first thing I asked Mum was ‘What's the time?' Then I instantly fell back to sleep before she had time to answer. It's strange the things we say when coming round from an operation. I was obviously unaware of what I was saying and I don't remember too much about my stay on the HDU, as I'd been kept heavily sedated.

After a few days, I was moved to the Intensive Care Unit (ICU) where I was constantly monitored and connected to a self-dispensing morphine machine, to help me cope with the pain. The nurses regularly moved me so I didn't get bed sores and regularly changed my dressings. Once I was well enough, I was moved to a normal ward. Here I started my recovery properly. Soon I was able to eat again but the hospital food wasn't that great. Luckily, my dear mum would bring food from the hospital café, which was much better. I then started to put weight on and gain enough strength to enable me to walk again. My stay in hospital seemed to last forever, despite having lots of people visit me each
day.

I was finally discharged from hospital, having spent ten very long days there.

After leaving hospital, my progress continued and I began eating normal-size portions again. I was given steroids to take and strangely noticed I had a craving for bacon sandwiches and hot chocolate.

A few weeks later, I started back at school. Unfortunately, it hadn't been possible to remove all of the cancerous cells during my operation, so I was told I'd need a course of radiotherapy next. A metal mask was made, to make sure I stayed perfectly still and didn't move while having the radiotherapy treatment. First, a mould of my face was made from wet plaster. This was placed over my face until it had dried. It wasn't a pleasant experience and I remember crying the moment I got out of the hospital that day. When I next saw the mask, I noticed how the eyes, nose and mouth had all been cleverly cut out of the mould ready for me to
wear.

My radiotherapy treatment lasted a total of six weeks. I used to have it in the mornings before school. It was actually OK having the radiotherapy and not as scary as I'd imagined. However, it wasn't nice being pinned down on a hard surface, but I knew the treatment would eliminate any chance of the cancer coming back and growing again.

Once my treatment was over, I started having check-ups every week, seeing lots of different doctors and always worried what they'd find each
time.

The operation had appeared to cause a few problems with my growth. I'd stopped getting taller and was put on a growth hormone, which had to be injected; ouch! Eventually, I learnt to do this myself, which made life easier.

Unfortunately, I also suffered from depression so saw a psychologist, who suggested I change school. I was moved to a hospital school with only six people in my class. This helped me with my learning but I still got depressed and kept crying at the most inappropriate of things. I guess I had been through a lot at such a young
age.

The first six years of remission were quite hectic, as I learnt to cope with the side effects and tried to get my life back to normal.

Thirteen years on, I'm now twenty-three and feeling the best I have ever felt. I still get down occasionally but I'm so thankful just to be here. I am currently training to be a paramedic and am really looking forward to a career helping people.

I now live each day as if it's my last; I appreciate how lucky I am to be alive and no longer take life for granted. If you're reading this having been diagnosed with cancer, trust me, it's worth the fight. Life will be so much more enjoyable and never again will you feel daunted or think you're unable to achieve your goals or dreams!

I must thank my surgeon and doctors for saving my life and thank all my family for helping me; especially my
mum.