by Chris Geiger
A couple of weeks later, my sister-in-law was visiting, so she attended my wig-fitting appointment at the hospital with me. It was actually an appointment full of laughter and happiness. We joked about for ages while trying on lots of different wigs. Finally, after loads of deliberation, I ended up with a wig that we both thought looked like it belonged on a plastic Lego figure. After a few days, I actually chose not to wear it, preferring headscarves. I got some in a variety of colours to match my various outfits; this idea worked better for me. I also went on a fantastic day out called ‘Look Good, Feel Good’, organized by the hospital. It was a brilliant idea and I had a great day. I was given a big bag of make-up and shown how to apply it properly, which really helped boost my confidence.
Slowly, I really started to feel different. I could think positively and look to the future. I noticed the sun, the flowers and the beautiful blue sky. I was starting to appreciate and take note of everything around me. I thought things like that only ever happened in films.
The chemotherapy was now well and truly flowing round my veins; it was a bonus not having to shave under my arms or legs. The hair straighteners I’d been given at Christmas remained unused. I could also get ready in half the time now, which Richard was pleased about.
Richard and I constantly joked about my situation; having a laugh helped me keep a perspective on things. His support and patience was totally amazing; we were really putting our wedding vows’ ‘in sickness and in health’ to the test.
The chemotherapy sessions were coming to an end and I was waiting for a date for the next part of my treatment: the radiotherapy. I prayed it would be as easy as the chemotherapy, but doubted I’d be so lucky. Soon enough, the radiotherapy treatments started, I was to have it Monday to Friday for the next five long weeks. As my appointments were at the same time every day, I got to know a number of cancer patients, which really helped. It was nice talking with people who were having similar treatment. There was a group of older men who nicknamed themselves ‘Gerry and the Prostates’; they even had a little singsong, which lifted everyone’s spirits. I don’t think Simon Cowell would rush to sign them up though!
It was explained that I had the ‘Gene 1’ type of breast cancer, otherwise known as Breast Cancer Susceptibility (BRCA-1). Women with BRCA-1 have up to a sixty percent lifetime risk of developing breast cancer and a fifteen to forty percent lifetime risk of developing ovarian cancer. There had never been any cases of breast or ovarian cancer in my family before. I’d assumed it had started with me. Later, I discovered my brother, dad and both his sisters had the gene; they are all now being closely monitored. This knowledge helped me understand the reason why I got cancer. Also, by being able to give my family this information, I knew some good had come out of my situation.
Finding the BRCA-1 gene had other implications, too. After a couple of days, I made the decision to have a double mastectomy and my ovaries removed. It was a big decision having more surgery, but Richard and I agreed it was the right choice. Strangely, we’d spend more time debating if we should buy a new car or clothes for the girls; but this was a no-brainer really. We both felt that, if it reduced the chances of getting cancer again and more importantly if it meant we’d live a longer life with each other, it had to be done.
Unfortunately, the bills still needed paying so Richard was away working a lot of the time. I remember one day while I was with little Ruby, she said, ‘Mummy, if you need me just call and I’ll be there.’ Her kind, loving comment melted my heart instantly and brought tears to my eyes.
Ruby and Lola have a fifty percent chance of inheriting my faulty gene. I obviously pray that they won’t, but I know even if I’m not here for them they have a fantastic daddy who’d walk across hot coals to support and guide them.
My surgery, chemotherapy and radiotherapy are all behind me now. It only feels like yesterday all this happened, but it’s been five years. There’s not a day that goes by when I don’t think about ‘The Big C’ and what I experienced over the past few years. Having had cancer is something I have to live with or, I should say, I am learning to live with. I never thought I’d have found the strength to go through the treatment.
People often say how brave I was, but I don’t think of myself as being brave. I just took each day as it came. God forbid you get cancer, I guarantee you will find an inner strength to deal with it; a strength that will help you to fight and win.
I had one friend who sent me a card every couple of weeks letting me know she was thinking of me, which really helped. Don’t be afraid to talk about cancer. Sometimes people shy away from the subject and try to brush it under the carpet; for me, talking really did help.
There were a couple of funny incidents that happened along the way. Once, when we were in a café, Ruby decided to broadcast to everyone that ‘Mummy has a poorly booby’, which was quite amusing, especially after seeing the look on everyone’s faces. When Ruby was little, she would walk into the living room wearing my wig, or I’d find her in my bedroom drawing eyebrows on her own face. Moments like these really made me smile and made the treatment tolerable.
I never thought I’d be sitting here now, writing my story and hopefully providing inspiration to everyone who reads it. If you have cancer, use this book for hope and make it your goal to have your story published.
I still take each day as it comes and I pray I’ll be there for my girls on their first day at senior school, their first proper date, their wedding day and all the milestones in their lives. However, if sadly I’m not, I hope they will be very proud of their mummy, and I hope I was an inspiration to them, as I hopefully am to you.
My Story by Ali Stunt
I’m a Statistic of One
Membership: # 3
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.
My Story by Katie Patterson
The Cancer Card
Membership: # 4
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.