The Cancer Survivors Club (4 page)

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.

The last two years have been a hard journey, but now I can look ahead. I have regular check-ups at the hospital, which will continue for the next eight or so years. But none of that matters because I'm still here today.

I'm now studying Psychology at Swansea University and left home last year to share a house with my university friends.

I fulfilled a lifelong ambition, too, by spending a long weekend in New York, which Lowri and I promised each other we'd do once I'd fully recovered. I also went on holiday with the girls to Ibiza to relax and enjoy the sunshine; thankfully, the alcohol doesn't make me sick
now!!

No more sunbeds for me… ‘They give you cancer, mind!!'

I was sitting opposite a doctor in a small hospital consulting room surrounded by medical equipment, trying desperately to comprehend the words ‘testicular cancer'. These two simple words continually spun around in my head like an annoying tune. To be honest, five years since joining the cancer survivors club, I can still hear those words echoing round the room as if it was yesterday.

The 3rd of April is a date I'll never forget. It's the day I shocked my family and friends when I told them my news. ‘Nope, I'm not joking… honestly' was a phrase I repeated a number of times.

Cancer was something other people got, not me. However, I'm now privileged to be able to provide an insight into my journey, how I survived and what it's like to proudly call myself a cancer survivor.

My story began five years ago when doctors told me I had a cancerous tumour, which had probably been growing inside me for several months, prior to its being discovered. In addition to the stress of my being diagnosed with cancer, my wife had recently decided to end our marriage. We were still living in the same house with our young daughter, but in separate rooms. So the atmosphere, as you'd expect, could at best be described as tense.

As I'm sure you can imagine, this wasn't a good time in my life. Not that there's ever a good time to be diagnosed with cancer. Sadly, I was feeling especially isolated and very lonely at the time and struggled more than most. I knew instantly I was facing the biggest challenge of my life; a challenge I had no choice but to accept.

During the weeks that followed the separation from my wife, I'd been experiencing some sharp pains in my left testicle. Initially, I put this down to stress, caused by both the breakdown of my marriage and overwork. My left testicle had always been larger than my right one, which I'm told is normal. When I was younger, my right testicle was un-descended, so I'd had a procedure to correct this. Sorry if you're eating while reading
this!

While taking a bath one night, I noticed my left testicle felt really hard, like a stone, not soft like the other one. When I examined it further, I got a sharp shooting pain, which made me physically sick. Over the next few weeks, the pain continued to get worse, so reluctantly I went to see my doctor. I was obviously embarrassed at the thought of him seeing and examining my privates; however, in hindsight, it was really nothing to worry about.

After I'd explained my symptoms, he took a look at me. I sensed immediately that he had concerns with what he'd found. He immediately referred me to a consultant urologist; this obviously increased my anxiety further.

According to a leading cancer charity, there are only around 2,300 cases of testicular cancer diagnosed in the UK each year. So many doctors never even see one case, this may have been his first. I obviously didn't know these statistics at the
time.

My referral appointment with the consultant urologist was several weeks away and I was worried that the cancer would spread to the rest of my body. I was having so many irrational thoughts, even though an actual diagnosis hadn't even been made yet; instinct maybe? I was stupidly convincing myself I was going to die. A friend at work said my outlook, or, as doctors called it, prognosis, if it was testicular cancer, was actually very good. ‘It's one of the most treatable cancers,' he kept saying. I repeatedly reminded him he wasn't a doctor.

While I was waiting for my appointment to see the urologist, the pain continued to increase. Soon anything physical, like just leaning over my desk or sitting on my daughter's bed reading to her, caused immense pain. Eventually, I couldn't handle it any more, so visited the Accident & Emergency Department at my local hospital. After a short and scary wait, I was led into a small cubicle by a young doctor, who was about my age. He examined me and carried out an ultrasound. I could see the screen, which clearly showed a mass in my left testicle; it looked so different to my right one. I was sweating profusely, yet felt cold and my heart was bouncing around my chest, caused by sheer panic I guess. While I was getting dressed, I noticed the doctor talking to one of his colleagues. Their body language suggested there was a problem. Then I overheard one of them saying, ‘It's a wake-up call, he must be about our age.' That's when I knew I wasn't being a hypochondriac.

Minutes later, while still in the curtained cubicle, I heard those unforgettable words: ‘Testicular cancer.' He said he was ninety-nine percent sure. I asked a number of questions, and his response was very kind and reassuring. I really appreciated his comforting manner and concern. The doctor went on to say it was highly likely the cancerous testicle would need to be removed as soon as possible. He left the room for a few minutes, giving me time to collect my thoughts. As I sat still on the examination couch, it felt like my heart was going to explode, it was beating so fast. I still felt ice cold and in some sort of suspended animation.

On his return, he suggested I have a chest x-ray. I obviously asked why I needed this when the problem was down below. He explained it was important to check the cancer hadn't spread to my lungs. He reassured me it was standard practice for newly diagnosed testicular cancer patients.

Yet again it was excruciating waiting for the results by myself; I felt so alone. I knew even when I did eventually get home there'd be nobody to talk with, hug or tell me I'd be OK; it was very upsetting.

The same helpful doctor gave me the x-ray results in what felt like the longest thirty minutes of my life. Thankfully, my lungs were clear; there was no sign of any secondary tumours. I could have hugged him but didn't want to add a black eye to my list of problems! He explained that my cancer was the most curable type and the prognosis was very good; everything my work colleague had kept saying. Despite what he'd said and seeing the x-ray as evidence, I still continued to worry. I was oddly convincing myself they'd made a mistake and my body was riddled with the disease. Obviously, now I can see it was probably just shock, causing me not to listen or believe what I was being told. These thoughts evoked so much unnecessary stress and worry.

It was hard to believe that little me had cancer; until this moment I'd been a healthy thirty-one year old. Naively, I always thought it was older people who got cancer; I never once dreamt I'd get it. Soon my thoughts turned to how I was going to tell people. I wondered what my parents would think and how my brother would react. I was unsure what my ex-wife would say or how to tell my adorable daughter. My emotions were all over the place and I didn't know what was going to happen next. I felt totally empty and isolated from everyone.

I rang Nic, my best friend, and told him my news. I asked if he could tell both my boss and ex-wife. Nic had also agreed to talk to my parents as I was too upset to tell them myself at the time. When I got off the phone, I broke down and began crying again, for what felt like most of that evening. Nic visited me in hospital later the next day, as I'd now been admitted. My parents also visited, which was a very emotional moment for us
all.

After a number of other tests and discussions with various doctors, it was decided they'd operate as soon as possible; until then I could go home. I didn't want to stay in hospital any longer than needed and thankfully there was a shortage of beds anyway. They'd also said that after the operation I'd need some chemotherapy, which was equally terrifying.

Foolishly, I spent the time waiting for my operation by going out every night and getting blind drunk. I thought this would help me forget I was ill. Yet all it really achieved was to worsen both the pain and my now fragile mental state. The result was I'd spend long days in bed just sleeping off my hangover. My parents were amazing though; they kept an eye on me and visited daily. Seeing Mum and Dad was much nicer than just having my phone, laptop and headaches to keep me company. Whenever I was on my own, I'd have really dark worrying thoughts. Not only was the operation worrying me, but I was also getting paranoid the cancer might be spreading.

I'd been allocated a specialist cancer nurse called Julia. She was brilliant; I'd call her for advice and whenever I needed to talk. Within just a few minutes of putting the phone down, I'd start worrying again. I couldn't kick the negative thoughts out of my
head.

While surfing the internet one day, I came across a guy called Philly Morris. He was the founder of the Checkemlads.com website. I also discovered a guy called Nick O'Hara Smith from the Testosterone Deficiency Centre. Both Philly and Nick were so kind on receiving my first email. They helped me understand my irrational thoughts and explained how my symptoms were normal. I started to appreciate I wasn't unusual or a freak. I found chatting online to fellow cancer patients who had survived this gave me so much hope and motivation.

My cancer journey continued. I had my left testicle removed and a biopsy was taken from my right side. This was the scariest time of my life. Thankfully, my mum and her friend kept me company and provided great support. I then had a CT scan to check the cancer wasn't spreading, which as the x-ray had already shown it wasn't. Naturally, the surgery scared me enormously, but at the same time the thought of being cancer free gave me enormous strength. After my operation, I experienced a lot of pain in my remaining testicle, so I visited the oncology team again. They arranged an ultrasound to put my mind at rest and more importantly check the pain was nothing sinister.

I soon met with the urologist to discuss the outcome of my operation. While there, I gave a sperm sample to check if any of my sperm were viable to freeze. I needed to do this prior to starting the chemotherapy treatment, as I'd been told one of the side effects was it could possibly cause infertility, although not in all cases. I gave a series of three samples over a period of a few weeks. The results unfortunately showed that I was no longer able to father a child; this for me was a hard blow and difficult to accept. Yet this news was obviously overshadowed by the fact I was still dealing with cancer.

I didn't like the idea of chemotherapy, but was told it was necessary just in case any of the cancerous cells were still lurking after the operation. Once this stage of my treatment was over, I began to feel concerned about my appearance cosmetically, so I had another procedure to have a prosthetic left testicle implanted.

Thankfully, I'm pleased to say I am now cancer free. I continue to have routine check-ups and my last scan showed I was still clear of cancer. I'm still officially a cancer survivor. From being diagnosed to the end of my treatment took just over three months, yet it felt like three years. These were the toughest days of my
life.

Once my treatment was complete, I attended cancer-related counselling, which is something that I really recommend; but I appreciate it's not for everyone.

Strange as it may sound, in hindsight, having cancer was one of the best things to happen to me. Although my journey at times was difficult, I actually never once lost hope and always had the strength to fight and become a survivor. I view my life and the world around me with different eyes now. I'm a proud dad and have met a new partner, Sarah, who I'm determined to have a long happy life with. I feel like I've been given a second chance and the ability to support, advise and most of all help those with cancer. It's my opportunity to do things that really make a difference.

I'm now heavily involved in creating as much cancer awareness as possible. I've appeared on radio stations highlighting the importance of both men and women examining themselves. In addition, I've helped organize various fundraising events, such as a swimathon and a 250-mile cycle tour. I also became a voluntary Livestrong leader and an ambassador for Above & Beyond. I also attend patient support groups, giving talks and supporting patients.

Most of all, surviving cancer has shown me that, with determination, we can survive; I'm living proof. I love my life now and I'll never take it for granted again or be so disbelieving of what people tell
me.

I hope reading my story helps. Always stay strong, and remember there are other people out there willing to listen, help and share their experiences. Never give up, and always keep hope in your heart.

Thank you to everyone for their care, love and support. I owe my life to every one of
you.