by Chris Geiger
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 t
he 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.
I now had one week before my transplant, so we rented an apartment in Cardiff. My parents, Lowri and her fiancé, Simon, together with my boyfriend at the time, Craig, all went on holiday together. This helped me take my mind off the bone marrow transplant, which I prayed would finally kill the leukaemia once and for all.
The treatment to prepare me for the transplant began. I received two days of intensive chemotherapy followed by four days of full-body radiotherapy. During this week, Lowri was given syringes to inject into her stomach to boost her stem cells, and once again Dad did this job; he was turning into a right little nurse.
On 29 October, Lowri was admitted to hospital to donate her stem cells – I know she wouldn’t have charged for them anyway; poor joke! For five hours, she had to lie still on a bed while a machine filtered out my new stem cells from her blood. Thankfully, her cells were strong and her stem cell harvest took just one day to complete. At this time, I was in another hospital nearby, still having the full-body radiotherapy twice daily. Mum and Dad visited us both at alternate times. It must have been so upsetting for them, having to see both their daughters in separate hospitals on the same day.
Saturday, 31 October was the big day. Mum and Dad, Lowri, Simon and Craig were in the room with me. The transplant itself was a huge anti-climax. A line was attached to my Hickman line and it was just like having a blood transfusion. I felt fine while this was happening, just very tired. It was unbelievable to think that this simple intravenous drip meant so much and was actually saving my life.
Mentally, I found the transplant difficult. There wasn’t too much pain and, when there was, my self-syringe morphine pump controlled it. Again there were times when I couldn’t eat because I felt so sick. My mouth and throat were painful but oral morphine helped. One of the hardest parts for me was being in the isolation room. But the lowest point was when I was told I wasn’t allowed visitors until two o’clock each afternoon. I was heartbroken – this really upset me. Eventually, they allowed Mum to come in early every morning to help me wash, dress and keep me company. I’d not been separated since my first day of treatment and I wasn’t going to be separated now; I couldn’t have coped without my family. They made sure I wore different clothes every day; I even walked around the room to exercise and sat in the chair rather than stay in bed. This really did help me. The rest of my family, who had moved to Cardiff, visited me as well. We all spent hours colouring children’s books and generally being silly; even the nurses joined in. I found this really helped pass the time and distracted me from my treatment.
The consultant told me I would be in hospital for at least four to six weeks; however, some patients had been known to leave the isolation room after just two weeks. I decided to make this my target and made a countdown chart. Excluding the seven days of treatment before the transplant, I crossed the days off every morning: 14, 13, 12, 11… when I got to 0, unfortunately, I wasn’t well enough to go home. So the doctors allowed me to go back to the apartment for a few hours each day, but I had to return to the hospital every night. Just three days later, I was allowed to stay at the apartment permanently. The chart really helped me, giving me a clear target to visualize my progress. I remember being so excited as I crossed off each day.
Once I was out of isolation, we stayed at the apartment in Cardiff for a further four weeks, to be close to the hospital and medical staff. I wasn’t allowed near crowded places because my immune system wasn’t strong enough to cope. Everything I touched had to be thoroughly cleaned. My mum to this day still uses anti-bacterial spray at home as she can’t get out of the habit; not a bad thing, I guess. Dad became a ‘pharmacist’ as I needed so much medication at different times of the day.
After four weeks, the six of us returned to our home and I just had one appointment weekly at the local hospital. After the amount of time I’d been away, it was the best feeling in the world being able to go home and see the rest of my family and friends again.
It’s strange how people react when they know you have cancer. Some find it really hard to deal with, which at the time really confused me. Some even avoided me and my family, which I didn’t understand. However, I constantly had those I really needed beside me and I now understand that different people deal with situations differently. Most people though were truly amazing. My uncle Alan and close family friend Jan worked at the hospital. So they visited me every day, early in the morning on their way to work.
My auntie Julie ignored me when I said I didn’t want to go to university any more. She managed to cut through loads of red tape and get my place deferred for a year. Little things like this aren’t so little really, they are huge and are very touching.
My girlfriends Lyndsey, Natalie, Sian and Rachel were amazing support also. Some days, I wouldn’t want any visitors, but they came round anyway. They knew they’d make me happy once I saw them. They all visited me at hospital and when they couldn’t they called or texted me; I was so lucky I had such good friends throughout.
Words cannot describe how much Mum and Dad helped me get through those eighteen months. I honestly feel I’d not be here now if they’d not provided so much help and love. They watched me day in, day out, constantly making sure that I was OK and comfortable. They made sure I was taking the right tablets and ensured our home was spotlessly clean. It’s hard to imagine how helpless they must have felt watching their baby girl going through the whole experience. They kept so strong throughout it all; I never felt alone with them by my side.
My grandmother was nearly eighty when I was diagnosed; just a month earlier, she had been given the five-year all clear from breast cancer. At seventy-five, my grandmother kicked cancer’s butt. What a true inspiration. It’s so helpful to have someone to admire, somebody who knows what you’re going through or feeling. For me, this inspiring person was my grandmother; I didn’t have the benefit of a book like this at the time.
I was also lucky to have Craig, who seemed to take the reality of my illness away. Craig was an incredible support. We had stopped seeing each other a year earlier, but, when he was told I was ill by Dad, he joined me and helped me every step of the way. With him I could escape for a while and just have some fun. We spent hours and hours watching films, eating food and playing games. I was so lucky to have his support. Some nights he even managed to hide from the hospital staff and stay the night with me; sorry, Dad.
I found sometimes it was hard to talk to the people closest to me because the last thing I wanted to do was upset them. I needed to find someone I felt was strong enough to listen. Even though I was positive most of the time, I still had worries and fears I needed to share with someone else. I confided in Lowri as
she was strong enough to hear it. Not only did she save my life, but she was my rock throughout my whole journey.
Whatever form cancer takes, it is a very serious illness. However, it shouldn’t be ignored or brushed under the carpet. My point is to try to keep a sense of humour and talk about it if you wish. I remember laughing so hard at times about things that had been said or happened.
Lowri and my girlfriends had such a dark sense of humour. At every opportunity, if we thought we could get something for nothing or a discount, we’d pull what we called the ‘cancer card’. This also worked well at home when we wanted dear Dad to make us ice cream or milkshakes. This ‘cancer card’ would ensure complete sympathy from almost anyone. Lowri was one of the funniest. At all the right times, she’d do something to make me smile or laugh. Even if it was 4:00 A.M. and I couldn’t sleep, she’d still manage to put a smile on my face.
In March, I felt that I wanted to repay the doctors and nurses that had been my family for the past few months. I decided to organize a sponsored fancy dress walk. Over three hundred people took part, walking five kilometres along the Mumbles coast in Swansea. It was an amazing day and I got an immense feeling of pride. I was still on medication and had to be careful as my immune system remained low, but I was so happy to walk and reach the finish line first.
I had my twenty-first birthday in April, and my parents held a party at a hotel in Swansea. Companies that Dad dealt with through work donated huge prizes, which were raffled, raising over £1,000. From the walk, birthday party and other events, our final total was almost £15,000. This was donated to the Lymphoma, Leukaemia and Myeloma Fund in Wales.
When I’m asked what is the most important thing people can do to beat cancer, I can easily say it’s staying positive and laughing a lot. I’m so grateful for many things throughout my treatment, but the most important aspect was being positive. I don’t know exactly how I did it, but my attitude from day one was: ‘I’m not going to die, I’m going to get through this.’ I really do believe it is this that helped me.