by Chris Geiger
Anyway, to start, I need to go back to before I was even diagnosed. I was first aware I was ill because I ached so much. My limbs continually hurt and I felt breathless from any kind of exertion. I’d been experiencing these various problems for around eighteen months. My family had a history of ‘funny guts’, as my grandfather called it. He is in his seventies and had bowel cancer, not that there was anything to suggest I did too. I wondered if I had Irritable Bowel Syndrome (IBS). The aches and breathlessness were eventually attributed to severe anaemia.
After a blood test, I was admitted to hospital and received four pints of blood. For a while, my life was almost on hold but the transfusion made me feel fantastic; within just a few hours, I felt recharged and able to enjoy my life again.
A few months later, I met a lovely man who is now my husband and, after a whirlwind romance, fell pregnant. There was then a sudden and distressing death in my family when I was just twelve weeks pregnant, which shocked all of us. During this stage of my pregnancy, I started feeling unwell again. I simply put my pain and tiredness down to the stress of the bereavement and being pregnant.
As time passed, I focused on just how happy my life was going to be, dismissing all the physical problems; I was pregnant after all. My brother and his girlfriend soon learnt they were also going to have a baby, which added to my excitement. I assumed all the unhappy sad times were behind me and hoped my pregnancy was the start of a new and exciting chapter in my life.
After a routine blood test, it was discovered I was anaemic, so I was given iron injections, which is nothing unusual during pregnancy. Yet what was peculiar was I wasn’t gaining much weight. However, despite all my worrying and various problems, my beautiful baby boy was born, and we named him Freddie. He had been born prematurely and was therefore very small. He arrived like he always does – quickly and the wrong way round. Even though he was tiny, at 4lb 6oz, he was perfect and required no special care. His mummy did need extra attention though. While I was learning to breast feed, I was also receiving yet more units of blood.
Eventually, we all left hospital and I guess we looked like all new parents in those first mad but amazing sleep-deprived weeks. I couldn’t believe that I’d created such a beautiful perfect baby. Freddie was here, he was ours and he was terrific. However, I continued feeling really quite poorly.
Every two weeks or so, I’d have a blood test and would then be admitted to hospital for another blood transfusion. Mum would keep me company and occupy Freddie. This also allowed Wayne to work and earn a much-needed income to allow us to lead a relatively normal life. I’d lie in a hospital bed while a slow trickle of life-renewing blood went into my poorly and rapidly disappearing veins. I was breast feeding Freddie and changing his wet nappies; I was exhausted. I’d never felt so tired in my life!
Soon, other symptoms surfaced in addition to the constant aching and tiredness. Every time I went to the toilet, I got intense pains; they were so severe I’d have to stop. This was obviously very worrying and I tried to push it to the back of my mind. I just wanted to spend time with Freddie at home being the perfect mummy.
Freddie was doing all the things he should for his age, but I felt like I was letting him down. The doctors were still looking into my continued blood loss. I had to endure endless tests, including an endoscopy, scan and a colonoscopy, but they found nothing. I kept being told different things. First it was Coeliac disease, then Crohn’s and then it was something else.
We still managed to go away on holiday. We hired a campervan enabling us to take Freddie with us everywhere we went. We’d even decided to run off to Gretna Green and get married. This was going to be our secret until I was admitted to hospital two days before for yet another blood transfusion. I had to tell the doctors I needed to be discharged by Friday as we’d arranged to get married on the Saturday. This kind of killed the romance a bit.
In October, I had another colonoscopy with lots of sedation this time, as the first attempt had been so painful I didn’t let them have much of a look. On a big screen next to me, I watched as the consultant discovered a strange-looking lump. I was really nervous and kept laughing a lot. I was enjoying the haze of sedation as I pointed and asked, ‘Ha ha, what’s that?’ Then I continued looking as she struggled with pincers to snip off a small piece of what I later found out was a tumour.
It transpired poor Freddie didn’t have much room to develop inside me because he’d been forming next to a tumour. I had both life and death growing inside me – an awful thought. Because of this, Freddie took some nutrients but the tumour took most. When I think about it even now, I struggle to understand why this evil disease decided to grow next to my beautiful baby and am amazed how my body coped.
The week after being told I had cancer was one of the hardest of my life, waiting to hear if it had spread or not. Because of this, frustratingly, I’d not been able to start any treatment and I still felt so ill and constantly tired. It was equally disturbing having to see my family doing their best to hide their emotions. I knew what some people might have thought; I was only twenty-seven and had a six-month-old baby boy.
I was finally diagnosed with secondary bowel cancer, which would need surgery and chemotherapy.
I was so pleased and happy they had finally found the cause of my problems and could begin treating me.
I felt at my worst when I went into hospital for the operation to have the lump removed. The ‘Nil by Mouth’ sign posted above my bed reminding staff I wasn’t to eat anything didn’t help. I’d also had to take some laxatives the night before to make sure my bowels were empty. I was at the lowest weight I’d been since I was a child. My red blood count was now just six, half of what it should have been. This meant I needed more blood before they would operate on me. I was feeling so worried and depressed and wondered if I’d even survive the operation. The excitement of them finding the cancer had rapidly eroded.
When I eventually woke from the surgery, I was violently sick. It was a horrible feeling but thankfully a Macmillan nurse had organized a private side room enabling me to be with Freddie. When I touched my side where the pain had always been, I felt nothing; it was such a big relief. Instantly, I realized the lump had been cut out. I knew whatever came next didn’t matter; I was going to do my best to survive.
As soon as I started to recover from the operation, I began a course of chemotherapy. Mum again kept me company every day and looked after my gorgeous boy while I received my treatment. It sounds a cliché I know, but she really was my rock. As a mum myself now, I fully appreciate how she must have felt.
I don’t want to write too much about the chemotherapy, but looking back Mum always managed to make me laugh, which was so important. She regularly made the three of us a picnic and helped Freddie to learn to walk while on the hospital ward. I tried to pretend we were like any normal young family, even if my chemotherapy pump went off every few minutes.
It’s very likely that the surgery and treatment I received for cancer was the cause of my intolerance to some foods. The surgery involved removing my ascending colon and rejoining my intestines. I also believe my digestive system is more sensitive now due to the chemotherapy; but this is a small price to pay. Most people at some time in their life suffer from similar complaints to these anyway. The biggest and most unique side effect is I now have less time to get to the toilet, less warning that I need to go. I’m trying a gluten-free diet, which appears to help a little, but I’m still learning about what my body prefers even now.
It’s these things that remind me I’ve fought cancer, but I am alive and enjoying life, which is the most important thing. I have some impressive-looking scars too; my favourite is my Caesarean scar but the one across my belly button is the one that saved my life. Strange as it may sound, I love it.
My family and friends provided such amazing support while I was unwell. One friend gave me a wonderful gift of a twice-weekly shiatsu massage. This gave me strength and showed her love, which helped beyond words. I
don’t regret the experience of having cancer, however strange that sounds. It’s funny to think having cancer was actually good for me. I’m pleased to say that no true friend shied away; they shared all my dark times and celebrated the great times with me as well.
Wayne and I don’t talk about my experience with cancer much; it’s hard for him to comprehend.
I’m not sure he really even understands it all now; I know I don’t.
What else is there to write about having cancer at twenty-seven? Don’t give up; it sounds so corny but it’s true.
If I had given up, I wouldn’t have my other beautiful son, Rowan, who is three years old now. My oncologist told me that it was highly unlikely I would remain fertile after all the chemotherapy, but another miracle occurred when my fantastic crazy Rowan arrived. It was incredible to experience a healthy pregnancy, without all the fatigue, blood transfusions and worry. I can now be the sort of mum I always wanted to be. My children are everything and I’m just a woman who is foremost a mother and also now a member of the cancer survivors club.
Having cancer has changed me for the better. I never put up with rubbish from people or waste time doing jobs I hate doing. We still have the stresses and strains of everyday life, but I never forget I’m lucky to have been given another chance. When you’ve been to the darkest place, there is nowhere else to go but up. Up, up, up and away with the rest of my wonderful life for however long it lasts.
My Story by Marilyn Taylor
A Bright Light
Membership: # 8
I’m sixty-five years old and my main hobby is gardening, but never in a million years did I think this would save my life.
One day, I thought I’d prune some of the tall trees in our garden. I climbed the ladder and reached the top of the tree with my sixteen-foot pruner. Once I’d finished the job, I threw the pruner on top of the growing pile of branches I’d cut off. At that moment, something in the back of my neck hurt and didn’t feel quite right.
A week went by and the pain in my neck got worse, so I decided I should go to the doctor. They said I’d probably just pulled a muscle and gave me some painkillers. These didn’t work and my neck continued to hurt, so the following week I went back again. This time I was given yet more painkillers, but stronger ones; again these didn’t work either. Four weeks later and the pain just kept getting worse. Then one night I went to bed and woke up to find that I had lost most of the use of my right arm. My initial thought was I’d had a stroke, which was terrifying. So back to the doctor I went again; calmly I showed him that my arm had stopped working. To my amazement, I was just packed off home with even more painkillers. A week later, I went back yet again and this time they still appeared to ignore what I was saying. It was becoming very frustrating, not to mention painful. It was now eight weeks since I’d started getting the pain while gardening and it continued to get worse. At times it was so severe it prevented me from sleeping normally.
During this time, there wasn’t one doctor who suggested I should have a scan; I’d now been seen by all five doctors at my local surgery, too!
Each week I went to see them and each week they gave me different types of painkillers, which provided no relief from the pain. I was at desperation’s door, so in one last-ditch attempt went back to the doctor. This time, I really did have a good old moan, I was so frustrated and angry.
At last, this doctor made an appointment for me to see a physiotherapist, to see if they could help with the mobility of my now useless right arm. The physiotherapist started various exercises, but the pain they caused was so intense it felt like my whole body was being kicked.
Eventually, the physiotherapist stopped the exercises, as they were actually making me feel ill. She thought I should see a doctor at the hospital. By the time I arrived, I was doubled up in pain. I begged for the doctor to do something for me and quickly. She arranged for me to have a scan. At long last, after nine weeks, somebody was actually listening to me. Just three days later, I was having a scan of my back and neck.
The following day, while I was waiting for another appointment with the physiotherapist, which I was obviously dreading, my doctor called asking if I could pop down and see him. This really started to panic me. It was then I was given the news that I had a tumour on my spine. Words can’t describe how absolutely devastated I felt. Immediately, the doctor made an appointment at the main hospital. I was told I should collect the MRI scan results from another hospital en route.
My husband and daughter arrived at the hospital within an hour with the scan results and I was immediately admitted. After months of moaning that nothing was happening, suddenly people were listening and things were moving quickly.
The next morning, I was to have a life-or-death operation – literally. When I came round from the operation, I was connected to a life-support machine. Thankfully, from there on, I progressed and got loads better each day. While I was recovering from the operation in the hospital, doctors told me they’d removed a large tumour from the top of my spine. This was why I’d been experiencing such terrible pain in my neck and back. Thankfully, now the pain has totally gone. I was told I was lucky to be alive. The surgeon said, if the tumour had not been found and dealt with, I’d have soon lost the use of all my limbs, not to mention my life. I was told I had an extremely rare type of cancer and it was even rarer for the spine to be the primary site for cancer. This news was such a massive shock to both me and all my family.
Each day, I kept thinking to myself, ‘I’m sure I didn’t hear this right’ or perhaps I’d been having some kind of bad dream. While I was in hospital I never once thought, ‘Why me?’ My focus and concentration was purely on getting better and surviving. The doctor once asked if I would like to see the hospital chaplain, which I agreed to. Not that I ever thought I might die, but I knew my Christian faith would help me through my treatment. The chaplain and I went into a room together and she asked if I wanted to pray. As we were saying a prayer, I could hear the chaplain speaking, but lost track of her being there.
As I clasped my hands in prayer, I saw Jesus’ hands praying in the same way as me. In his hands he was holding the brightest light I’d ever seen. Next to me in my prayers my husband and daughter were sitting in a line. Jesus passed the light into my hands and then I passed the light into my husband’s hands. He in turn passed it on to my daughter. This was truly a wonderful feeling and, although the chaplain was still speaking, I’m embarrassed to say I didn’t really hear much of what she said. She asked me if I was all right and I explained I’d seen the most wonderful sight. Afterwards, she told me that she felt I’d received a truly wonderful sign and the light would always be with all of us, wherever we all go. From that day on, my life has continued to get better.
Near the end of my stay in hospital, six of the doctors came to see me. I knew they had come to talk to me about the cancer. One of the doctors said the cancer treatment would start once I’d been discharged. This again was a bit frightening, but I was determined I’d deal with whatever treatment I had and ultimately survive.
I was measured up for a collar to support my spine and neck; I had to wear it for about nine weeks following my discharge. I even had to wear the collar in bed, which prevented me from lying flat on my back. This was because, when the surgeon operated to remove the tumour, my spine had to be rebuilt with a titanium mesh and cement to replace the fifth and sixth vertebrae. This was due to the bone being completely destroyed by the cancer.
I soon received a course of radiotherapy, which consisted of five sessions a week.
From time to time, I needed the odd x-ray just to ensure that everything was all right.
In all the time that I had the cancer, I never once thought that I would die. I believed I’d get better because I had everything to live for: a wonderful husband, daughter, son-in-law and grandson. They were my reason to live, fight and beat the disease.
I’ve now fully recovered and I owe my thanks to all the doctors and nurses who have
helped me along my cancer journey; without them I would not be here. I must say to everyone, if you think that you might have any type of cancer, please get it checked. There was nobody more frightened than me and I’m so grateful to the people that saved my life.
I’m right handed but unfortunately due to the tumour I lost the use of part of my right arm. Thankfully, I can use my left arm and hand to move my right arm where it needs to be, and this works just fine. I have now had the results from my latest tests, which say there is still no sign of any cancer. This truly is a wonderful feeling.
Unfortunately, my husband was diagnosed with prostate cancer in July. This has been a really stressful road we have both been down but now everything is drawing to a close. Thankfully, my husband has also recently been given the all clear from his cancer.
Our thanks go to our family for their love and devotion shown to us.
My Daughter’s Story
by Michael Stephenson
A Father’s Perspective
Membership: # 9
My daughter Clare was having a difficult time during the early stages of her long-awaited pregnancy. She detected all was not well but her doctors didn’t appear overly worried. They simply put her concerns down to being an excessively anxious new mum-to-be.
In June, my wife and I visited her at home, just as doctors had finally agreed to admit Clare to hospital for some tests. They wanted to explore why she felt so unwell. Clare asked her mum, Yvonne, to accompany her.
After her appointment, Clare then stayed with us for the weekend. However, she soon received a phone call from the hospital asking if she could pop back in on the Sunday. They explained they wanted to carry out some more tests. Clare readily agreed as she was feeling so unwell. She actually asked if they could see her a day earlier, on the Saturday, and thankfully they agreed.