The Cancer Survivors Club (3 page)

So I'm told I've got cancer and pancreatic cancer at that. My head fills with questions: ‘How did this happen?', ‘How are my children going to cope?', ‘Am I going to die?' and ‘OMG, my husband could be widowed.' The fear is insurmountable. Then the numbness comes, the disbelief and the detachment from reality. People are speaking, doctors explaining and nurses reassuring me. Their lips are moving but their words sound warped and incomprehensible. ‘How do you cope with this one, Ali?' I kept asking myself.

Thankfully, my body
–
and mind, for that matter
–
both have a remarkable tenacity for survival. This probably stems from when we were a species that lived in caves and sabre-toothed tigers pursued us for lunch; our natural instincts kick in and we develop mechanisms for coping. Fight or flight, I think they call it. We instinctively do one or the other, depending on the circumstances. With my experience of pancreatic cancer, I know I have done
both.

The night before my operation to remove eighty percent of my pancreas
–
oh, and my spleen
–
I was sitting in my room ‘listening' to others again. This time, it was the consultant anaesthetist going through the next day's procedure and what his role was. I'll be honest, I was terrified. Not of the anaesthetist, who was lovely, and not of the cancer at this stage. Nope, I was terrified of having a general anaesthetic. I'd never had one before and I wanted this guy standing in front of me to promise I'd wake up after the operation and certainly not before. He was kind and helpful, but looked at me in a bemused manner.

He obviously knew my diagnosis and the statistics for the disease. I was acting strangely, but assume this was my way of handling the enormity of what was to come
–
a process of breaking down the situation into manageable bite-sized chunks; strange, yes, but it was working for
me.

Then there was the chemotherapy. My only so-called knowledge of its side effects was from watching television or film dramas, which in many cases exaggerate the nasty bits for dramatic effect. So I naturally thought the six-month course of treatment would cause me to constantly hug the toilet and instantly go bald. While I wasn't relishing the thought of feeling sick for months, my overriding fear was losing my
hair.

Most people may say it's totally illogical, irrational and plain stupid that a woman with cancer is more frightened about losing her hair. But all those media images conjure up a picture of a cancer patient being bald-headed. I most definitely was a cancer patient, but I didn't want to be seen as one. Nor did I want people to pity me. To me, part of coping was being seen and treated as a normal person. Some of you may call it denial, but I just didn't want to join the cancer patient club. I was really lucky and relieved I didn't lose my hair. The combination of drugs I'd been prescribed just made my hair thin out a little, but not fall out totally. Both four-letter words, but a big difference to a woman who loved her hair. I was also fortunate as I didn't suffer from the sickness I wrongly assumed everyone inevitably
got.

The treatment itself was tolerable
–
just. What I didn't like so much was the chemotherapy pump. I needed a Groshong line fitted. It was a small tube tunnelled under my skin into my central venous, via a small incision in my chest. The Groshong line, through which the pump containing the chemotherapy drugs is attached, can be left in place for extended periods of time; I hated that bloody pump. I hated the tubes and the site of them going into my chest. I hated the fact that I had to carry around an unattractive ‘bum-bag' to carry the pump in; to my knowledge, Louis Vuitton doesn't make them! Essentially, I was carting around medical paraphernalia twenty-four hours a day, seven days a week. This brought attention to my condition and didn't allow me to forget it either. After some three weeks, my husband had named the pump Eric
–
probably to wind me up. I just wanted to get rid of the thing; ultimately, I just wanted to go back to being a normal person again.

I did my best to understand and appreciate that these abnormal situations I'd somehow found myself in were the very things that were actually keeping me alive.

During my treatment, it was important that I still felt in control of my life. The reality was that a team of surgeons and oncologists were in control, and ultimately whether I lived or died was up to the cancer inside me. Being able to remain positive was very important for me and played a big part in my survival. My whole family and all my friends obviously helped me believe I was going to survive and this was just one of the obstacles that life sometimes throws at
us.

Pancreatic cancer has such a poor prognosis that I had to think
–
and still do
–
that I'm a statistic of one and that not all the statistics I read about pancreatic cancer apply to
me.

The pancreas is part of our digestive system. It's a large gland about six inches long and shaped like a leaf. It has two important jobs: firstly, to produce the pancreatic digestive juices and, secondly, to produce insulin and other essential hormones. Despite having had most of mine removed, I'm still able to make enough insulin but have to keep a close eye on my blood sugars to make sure I don't develop diabetes.

After my recovery, I decided it was time to step up the levels of awareness for pancreatic cancer, so founded Pancreatic Cancer Action. I'm fortunate to have the support of many leading clinicians and researchers in the pancreatic cancer arena, along with others whose lives have been touched in some way by this type of cancer. Five-year survival rates for pancreatic cancer have not changed in the last forty years; it's my mission to change this by increasing awareness. Pancreatic Cancer Action is developing educational programmes for trainee doctors. We have also created interactive training materials for practising clinicians where they can claim Continuing Professional Development (CPD) credits as part of the revalidation process.

Each of us deals with things in different ways, according to our own personalities, experiences and upbringing. There is no right or wrong way; we each must do what we feel is right or feels comfortable. While I've not been happy to become a member of the cancer patients club, I am obviously very happy to be part of the cancer survivors club. According to a leading charity, there are over two million cancer survivors in the UK alone
–
a club that is thankfully growing.

I hope that in time pancreatic cancer patients will help swell those numbers, too, and that each one of them purchases a copy of this
book.

Reading a story like mine, when I'd just been diagnosed with Acute Lymphoblastic Leukaemia (ALL), would have made such a positive impact on me. I'm now therefore more motivated than ever to spend time writing about my experience, in hope it gives encouragement, comfort and inspiration to thousands of other people.

Leukaemia, like all cancers, is an awful disease, yet normal people just like me are successfully fighting back and surviving. My dream is that, one day, being diagnosed with leukaemia will be as mundane as being told you've got a cold; so this is my story.

I was twenty years old and having the best time I'd ever had. I'd enrolled at college, passed my exams and secured a place at university. It was June and I was looking forward to spending the summer partying with the girls; however, it didn't quite turn out that
way.

I began feeling very tired. I'd wake up in the morning and start my college work, but by midday found myself needing to go back to bed and sleep. Over the next three weeks, I also began to get headaches. However, my biggest concern was that I couldn't drink alcohol without being sick
–
important when you want to have fun! I visited my doctor five times in less than three weeks, each time explaining my different symptoms. These included tiredness, vomiting, shortness of breath, an increased heartbeat and my limbs constantly aching. The doctor, along with everyone else I saw, put my problems down to ‘burning the candle at both ends'.

Eventually, the doctor organized for me to have a blood test at hospital but I was naughty and I didn't go, preferring to go shopping; a girl needs her retail therapy! I'd convinced myself there was nothing really wrong with me and I just needed to cut back on my nights out. However, the following Monday, I was forced to see my doctor yet again, only this time Mum insisted on coming with me. She wanted to make sure something was done. Yet again the doctor arranged an appointment for a blood test and I had to promise I'd go this
time.

It was now the middle of July. Mum and I headed straight to the hospital that day, where I had the blood test and we then went home. To my surprise at around four o'clock the same afternoon my doctor called. He explained the hospital would be ringing me later that night as they wanted me to be admitted. This obviously shocked me; however, I felt pleased they'd found something wrong at last. Now I just needed fixing. I assumed they'd probably give me a few tablets or a course of antibiotics and I'd be sent on my
way.

That night I went to the hospital with Mum and Dad; I can't remember everything that happened now. I do know I was admitted to ward eleven and was told I'd need a blood transfusion. Dad tried to make me laugh, joking about whose blood I was getting. The blood transfusions actually lasted all night. My parents later told me they'd been called into a quiet room. There, a consultant explained to them that my blood tests revealed something was wrong. I knew none of this at the
time.

The doctors didn't know exactly what the problem was and further tests were needed before an exact diagnosis could be made. My dad was convinced like me that I was just anaemic.

We both thought I simply needed a few iron tablets, and I'd soon be back to my normal self. Mum, however, had different suspicions, but she kept these to herself at the time. An appointment with a senior consultant was arranged for two days later, when they would explain everything and give me the final diagnosis.

I'd now been in hospital for two nights and I was keen to get home; I hated hospital beds. I soon started feeling better after the blood transfusions, convincing myself I was just anaemic. I assumed I'd be discharged after the 8:00
A.M.
meeting with the senior consultant. I set the alarm on my watch for 6:00
A.M.
and had a shower and packed up my things. I remember tip-toeing around the ward while everyone slept, doing my best to be quiet while doing my hair and make-up
–
important even in hospital!

It seemed like a lifetime before the consultant eventually arrived. By now, my parents, my sister Lowri and her fiancé, Simon, had also arrived. The consultant began by explaining that they'd found a problem with my blood. I wasn't really paying much attention, just wondering how long it would be before I could get home. Then I heard the word ‘leukaemia'. I remember seeing my sister put her head in her hands and I felt I should be reacting in the same way. I'll be honest, I didn't even know what leukaemia was. The consultant went on to explain that it was cancer of the blood, but it was curable. The only words I heard throughout the whole meeting were leukaemia, cancer and curable. I remember also being told that the people who stayed positive had a better chance of surviving. I lifted my head and looked around the
room.

I saw posters on the wall with cancer and leukaemia written on them. In hindsight, I'm surprised I'd not noticed them during my first two days in hospital. Later that day, the doctor explained that, should I need a bone marrow transplant, a donor would be needed. He asked my sister Lowri and my parents if they wanted to be tested. This did start to worry me; I didn't like the sound of it one bit. Not that I had any idea what bone marrow was or how it was transplanted, but it sounded painful.

That night, I stayed in hospital again and for the first time felt truly frightened. It's hard to explain but I think I was in a state of shock. I knew what was happening, but it didn't feel like it was happening to me, if that makes sense? It was as if I was outside my body, looking down on myself. There were times when I'd forget what I had just been told or I'd purposely try to forget. However, the shock would always hit me again later. I spent most of that first night texting Lowri, who always replied reassuring me and making me laugh.

I was told that I'd need some chemotherapy and a nurse explained how it worked. My treatment would begin on Friday, 24 July; at least it wasn't Friday the
13th.

I was feeling really nervous that morning as I walked into the Day Ward. I soon noticed other cancer patients being treated and started shaking with fear and was close to tears. I thought my hair would fall out the second the chemotherapy entered my body, I was so worried. I sat down and looked around the room. There was a guy about my age sitting next to me, and I noticed a girl opposite also about the same age. They were both already attached to intravenous drips. I can't describe how terrified I was; I couldn't even muster up a false smile. My parents and Lowri had all come with me, and their support was invaluable. They listened carefully to everything I was being told and watched as I was given my first dose of chemotherapy. I was in such a panic I didn't actually notice when it had started.

The two other patients, who were already connected to their chemotherapy when I sat down, soon started talking to me. They were so supportive and kept me laughing and joking throughout the whole chemotherapy process. This helped take my mind off what was happening. They were amazing and have now become great friends.

One of the patients was called James. I remember him asking why I had such a lovely suntan.

‘Umm… sunbeds actually,' I replied, feeling rather embarrassed.

‘Careful… those sunbeds give ya cancer, mind.'

We all fell about laughing, thinking it was the most hilarious joke ever. Before I knew it, my first chemotherapy treatment was over and I couldn't believe I'd been so worried. Much to my delight, my hair didn't fall out immediately either. It actually took a number of weeks before that eventually happened.

I received chemotherapy every week for four weeks. For the first two weeks, I stayed at the hospital. The last couple of weeks I was allowed home during the day, but had to return at night. Going home for the first time felt very strange and I hated having to go back in the evening. I'd constantly begged anyone who'd listen for two weeks to go home, so when they finally said yes I was surprised how strangely frightened I'd become. The hospital was my safety blanket; I felt safe and secure there. The thought of being away from the various doctors and nurses made me rather apprehensive. Contradicting this, I still couldn't wait to get home and snuggle up in my own bed again.

With access to the internet at home, I wanted to do a little research on leukaemia for myself. I found that there were many different types, and treatments varied a lot, depending on the type of leukaemia. There are two main types of Acute Leukaemia: Myeloid and Lymphoblastic. I had Acute Lymphoblastic Leukaemia. There are also three main types of Chronic Leukaemia: Myeloid, Lymphoblastic and Hairy Cell. Chronic Leukaemias are slower growing than Acute. I was soon becoming an expert.

One day while I was at hospital, I was asked by a very happy-looking doctor, ‘Have you been told the news?'

I panicked as, even though she was smiling, I was alone and didn't want to hear more bad
news.

The doctor said, ‘It's amazing news
–
your sister Lowri is a perfect match for a bone marrow donor.'

I was so excited and rang Lowri straight away, even before I told Mum and Dad. Lowri was overjoyed too and we both cried with each other down the phone.

After my first chemotherapy session, I didn't feel too bad, but the more chemotherapy I had, the worse I began to feel. I felt sick constantly but was soon given some anti-sickness tablets. Actually, by this time I was on a cocktail of tablets, around forty a day. I didn't care how many tablets I took, as long as they were helping to cure me. By this point, my arms were black and blue from the numerous intravenous drips, so it was decided I'd have a Hickman line fitted. This made a huge difference.

After four weeks, I was given a break from the chemotherapy. I was able to stay at home and just returned to the hospital every two or three days for blood tests. I had to take my temperature every four hours and, if it went above 37.5°C, I'd have to return to the hospital immediately. Within a couple of weeks, my body recovered enough and the next stage of my treatment was explained.

I was to have chemotherapy in some form every single day for another four weeks. This really frightened me as for the first month it was just once a week not daily. The consultant explained that for the first two weeks I could stay at home, and then I would probably need to be admitted. This was because I was likely to feel so unwell and because the risk of getting an infection would increase. This was one of the toughest months of my treatment. Every day I had to travel to hospital except for Saturdays. Mum drove us each morning and Lowri and Dad would come and keep me company during their lunch breaks. Most of the day was spent at hospital, but knowing I'd be able to go home made it more tolerable. I had chemotherapy tablets every day of the week and a lumbar puncture every Monday. These gave me terrible headaches. It turns out I should have lain down for a few hours afterwards, rather than rushing
home.

On Tuesdays and Fridays, I had chemotherapy intravenously, and I had a break from hospital on Saturdays. On Sundays, I was given intramuscular injections in my leg, which I really hated. It was like a military operation, with everything timed to the hour. Dad and Lowri would take me to hospital on a Sunday and hold my hand while the injections were given. We even talked about things like what McDonald's meal we'd have on the way home, which I know wasn't healthy, nor did I feel like eating, but it helped distract me from the pain a little.

After the first two weeks of treatment, I was asked if I wanted to be admitted to hospital; I replied with a big emphatic ‘No'. Driving to the hospital was exhausting and I spent most of the twenty-minute journey with my head in a bowl, but it was still much better than staying in hospital. I found that having to get out of bed, get washed, dressed and out of the house every day really helped me stay active and positive. This I appreciate isn't an option for everyone.

By now, I was constantly feeling nauseous. I had to focus hard for an hour or so, in order to make myself want to eat. My poor mum would cook a meal she thought I'd like, then by the time it was ready I'd start feeling sick again. During this month, my diet pretty much consisted of lots of water and chicken Super Noodles. It was the only food I could eat without it making me feel ill and the only meal I could really taste. Not even a McDonald's would do the trick. It was so hard sometimes to eat when I felt so poorly; I couldn't taste anything for a start. However, I just kept telling myself I needed food and fluid to survive when I was healthy, so I certainly needed it now. My family were so supportive and constantly reminded me to eat, which I eventually managed to do most
days.

My hair slowly started to fall out. I remember Mum, Lowri and a friend washing it over the bath. So much of it was falling out, to be honest, I think it was harder for them than me. I'd already accepted this was going to happen so it wasn't too upsetting really.

Towards the end of the four weeks of chemotherapy, I decided to buy a wig. I had two; one was free from the National Health Service (NHS) and the other we bought. I ended up only wearing them once. The day I brought the wigs home I decided I should shave off all my remaining hair. I wasn't devastated; I actually just looked in the mirror and laughed. Looking back, it was an unusual situation to say the least. My friend Natalie was shaving my hair while Dad was hoovering my head. I didn't want to make a mess on the floor. This really makes us all laugh now when we reminisce about my treatment. I didn't feel comfortable wearing the wigs, so I finally decided not to wear
them.

The day after I finally finished my second chemotherapy regime, I had yet another appointment at the hospital. Here I was told all about the bone marrow transplant and what was involved. By my having a bone marrow transplant, the doctors were able to give me very high doses of chemotherapy and radiotherapy too. The doctor explained that bone marrow is the spongy stuff inside our bones and it makes our blood cells. As the high-dose chemotherapy kills off the bone marrow, they need to put the marrow back. This is done like a blood transfusion through an intravenous drip. I had no idea what a transplant was until then, but was shocked when the consultant said it would be done in just three weeks' time. This news scared me but I thought the sooner it's done, the sooner my nightmare would be over. I was to have two days of intense chemotherapy and four days of full-body radiotherapy, twice a day in the morning and evening. My consultant was incredible and explained every last detail to us in the meeting; we were there for what felt like hours. During the meeting, I was told there was a very high chance my ovaries could be destroyed by the chemotherapy and radiotherapy. So a fertility doctor kindly met me and arranged for my eggs to be harvested and frozen. I had injections every day, which Dad quickly learnt how to do at home. Then, after just ten days, I had enough eggs for them to go ahead with the procedure. I'd always thought that perhaps when I was older I'd like to have children, so this was very important to me. Yet, at the time, I was feeling so exhausted I kind of hoped I wouldn't have the option to freeze my eggs
–
mainly because it meant yet more time in hospital and less time to myself before my transplant. Mum convinced me to go through with it. She was obviously right and thinking of my future. Now I'm so pleased I decided to do it. Compared to everything else I'd been through, it was a small and painless procedure really.