The Cancer Survivors Club (16 page)

I now only had one week until the operation and started to get ready. I sorted out my bags and packed them with plenty of DVDs, books and magazines to keep me occupied. The hardest thing I did by far was to write letters to Tracey and my two daughters, Jessica and Chloe. Just in case things didn't go my way and I didn't return home. It was a worrying time. I spent a whole afternoon in the bedroom in tears, doing my best to put my feelings into words. This was an awful and very difficult experience. Unable to sleep at night, I resorted to using some chemical help prescribed by the doctor. I didn't want to go into an operation already exhausted through lack of sleep. It was important that I was well rested.

Eventually, the day I had been dreading arrived. I was all packed and ready to go. My parents arrived to collect us. We wanted to get on the road early to avoid the rush-hour traffic. It also meant we got our goodbyes to the family out of the way quickly and didn't have time to think about things too much. I held my girls tight and again couldn't help crying. This I prayed wouldn't be the last time I held them. I tore myself away and we got into the car and were soon on our
way.

Tracey and Mum checked into the on-site accommodation, as they were going to stay with me while I was hospitalized. I headed towards Ward C2, the specialist Pseudomyxoma Peritonei Unit. Here I was shown to my private room with en suite. Throughout the day, various people came to speak with me and lots of tests were performed. In addition, I had to sign the consent forms and was now only allowed a diet of clear fluids.

The following day, I was visited by the surgical team, anaesthetist, stoma nurse, physiotherapist and many other staff. There were five separate consultants on the team, as well as the specialist nurses. That evening, we were given a tour of the Intensive Care Unit (ICU) so we could see where it was and get used to the environment where I'd wake following the operation. Each bed was attended by one member of staff and the atmosphere was surprisingly relaxed, which was reassuring.

On 2 February, the nurses woke me early, allowing me time to get up and have a shower. I surprised myself by how relaxed I was. I think by now I knew I was prepared as much physically and mentally as I would ever be. I just wanted the operation all over with. Tracey and Mum arrived to see me off. I was given some medication to sedate me a bit and sat in the chair trying to fight it while talking to them. I don't really remember too much after that. I said my goodbyes and got on the trolley. Eventually, I was taken down to theatre at around 7:15
A.M.
I vaguely remember the anaesthetist explaining what was happening, then it was lights out and I fell asleep.

I was in theatre for twelve hours in total. I understand the nurses called Tracey and Mum three times throughout the day with updates on my progress from the surgical team. They got the final call around 9:30
P.M.
to say that I was out of surgery and now in ICU. The operation had gone well and they had removed the entire tumour. I'd also been given the heated chemotherapy (HIPEC) washout that kills all the microscopic cells. This treatment would continue for another four days after the operation. Due to the complexity of the operation, I was also given a temporary stoma that I'd need for approximately three months. This was to allow the bowel to rest and recover from the trauma of the operation.

My first memories after the operation are vague and very blurred. I remember the consultant telling me that I was out of theatre and the operation had gone well. He then went off to find my family and I soon fell asleep again.

I was sedated throughout the remainder of that night and was finally brought around the following morning. This time, both Tracey and Mum were there, but I was still intubated at this point so couldn't talk. I kept trying to tell them that I was cold. In the end, I was forced to write it down, and eventually after several attempts they understood and I was given an extra blanket.

The next time I woke, my breathing tube had been taken out and I was far more aware of my surroundings. I was still connected to various machines, including a nasogastric tube, a central line in my neck, an epidural, a PCA to administer morphine, two chest drains, six stomach drains and a catheter. I couldn't move without help from two nurses. I wasn't in too much pain but used my PCA to administer the morphine as and when I needed it. The epidural worked well, making me numb from the chest down. I was also given Ketamine, which had the effect of inducing hallucinations, which didn't start off too bad
–
just silly things such as mosquitoes flying around and the illusion of mice in the roof space
–
but some turned nasty.

I suffered auditory hallucinations to begin with and heard voices when no one was there. On the third night, I went through what seemed like a long and detailed hallucination, where I was dying. I saw vividly that I hadn't made it and I wasn't going to pull through. My family were brought in and I started saying my goodbyes and said I was sorry to be leaving them. It was all very real and I still struggle to think about it now. This really affected me in a bad way. The final two incidents were when I woke up and for a while didn't know who I was, or where or why I was there. Again it was all very strange, very disturbing.

A week passed and I was making good progress, when doctors started to talk about moving me out of ICU and into the High Dependency Ward. This really pleased me as I'd become tired of the ICU and knew the move was a step closer to getting home. Quite suddenly one evening, it was announced I was moving and staff arrived to carefully transport me to the specialist ward. I'd hoped for a single room again and was disappointed to find that I would be sharing the room with another patient. My first thought was that I hoped he didn't snore. It took me a while to settle; I was a little unnerved by the fact that I no longer received the one-to-one attention of a nurse around the clock. However, the environment was quieter and there was more space for my visitors.

I introduced myself to my room-mate. His name was Ron, a lovely old fellow well into his eighties. We started with all the usual questions about each other
–
where we lived, family, kids, all that kind of thing.

‘What line of work did you do?' I enquired.

‘You don't want to know that while you're in here, mate,' Ron replied.

‘Yeah, sure I do,' I
said.

‘I was an undertaker,' he said, smiling.

I found this very funny and we both had a good laugh about it, instantly becoming best of friends. I spent just over a week sharing the room with Ron, never running out of things to chat about.

Outside, the weather was cold and snow showers blew through regularly. As each day passed, I gradually improved and grew stronger. I started walking further with the help of the physiotherapist. Soon I could walk on my own, once all the drips, drains and various tubes had been removed.

Living with the stoma wasn't an issue, contrary to what I had imagined. I'd become quite proficient at emptying, cleaning and changing the bag. This was my last hurdle to overcome, and the following day I was told I could go home. My clothes literally hung off me; I'd lost over two stone in the time I'd been in hospital.

The two-hour journey home was a long one and I was exhausted by the time we arrived. It was a tearful reunion but at least I was home; I'd actually made it. The following few weeks, I continued with daily walks and gradually grew stronger and stronger. Adapting to home life, living with a stoma and coming to terms with what I had been through was a struggle, but at least I was getting better.

Three months passed, and I went back to Basingstoke Hospital to have my stoma reversal operation. The operation was a walk in the park compared to the MOAS and all went well. Afterwards, I did have a rough time though and was quite ill for two or three days before my bowels started working properly again. I remember quite clearly sitting outside the hospital reception one evening, in my dressing gown, watching the sunset with my arm around Tracey. We took in the fresh air and for the first time I felt like a normal person again. I was truly starting to feel better.

I spent a few more weeks at home recovering and then finally returned to work. Initially, I started off working just half days then built up to full-time. It was great to get back into my busy life again and not have the worry of my operation and cancer hanging over my
head.

While in Basingstoke for the stoma reversal, I'd decided I wanted to try to raise some money for the PMP ward. This would allow them to continue their research into this rare form of cancer. So I soon found myself planning a sponsored walk around the Snowdon Horseshoe. We would take in the ridges around each side of the mountain as well as the peak itself. I was joined by other friends and family, including a fellow PMP sufferer who had endured the MOAS operation at the Christie Hospital in Manchester and was raising money for them. It was great that both specialist centres in the UK would benefit from the one event. It was only six months since my MOAS and three months since my stoma reversal. We had a great day, completing the walk in around seven hours, and we raised thousands of pounds for both the hospitals.

Alessandro kept vomiting for nearly a week so I decided it was best to take him to the doctor. Their opinion was he simply had a stomach infection, but he didn't get any better. Therefore, a week later, I took him to the hospital and this time they thought he had hepatitis. However, when they did an ultrasound, they soon discovered he had a large tumour, which measured about 7 cm by 10 cm in
size.

He was immediately hospitalized on the Saturday, and by Wednesday morning we had been rushed to England from Gibraltar, where we lived. I have two other children, both girls, aged one and ten years old. Alessandro is the oldest at eleven years
old.

Alessandro had now become very weak and looked almost yellow; all he did was sleep. Initially, doctors thought the cancer was in his liver so we were transferred to a different hospital. Alessandro was actually put on a brand-new children's ward. As he was one of the first to be admitted to the new hospital, they gave him a commemorative certificate.

Surgeons were unable to operate because his tumour was so large it was pushing on his stomach, liver and heart. They felt such an operation would be way too risky and life-threatening. It was therefore decided his only chance was some very aggressive chemotherapy. I was told if this didn't work, there was very little else they could do to save him. I was obviously terrified at the thought of losing
him.

He was to have chemotherapy every day for a whole week, and then once a week during the treatment he would go into theatre to also have it injected into his spine. When I arrived at the hospital one day, I remember seeing lots of other terribly sick children on the ward. One child had only just celebrated her first birthday; it was heart-wrenching and so sad. Alessandro thankfully slept most of the time during the first two months of his treatment. He had a very special teddy bear he took everywhere with him. He was so ill one night I thought he was going to
die.

I spent the whole night with him, wondering whether I should keep the teddy as a reminder of Alessandro or bury it with him. My thinking was that at least he wouldn't be alone; he'd have his teddy he loved so much. As you can well imagine, this was an absolutely terrifying and worrying night.

One day, he shocked me by actually asking if he was going to die. He said he wondered because whatever computer game he'd asked for recently, I'd bought him. If truth be known, I really did think his time was limited so I didn't want him to go without anything, for what time he had left. I didn't normally spoil him but this was different. I obviously reassured him that he'd be fine and not
die.

He made a lot of friends with other children on the ward and I formed some close friendships with their parents. It was just nice to talk and swap stories; this really helped us all a
lot.

Alessandro was always the first in the classroom at the hospital, as thankfully he wanted to keep up with his schoolwork. One day, when he was too weak to go to school, the teachers gave him a musical keyboard, so he could keep himself occupied. Up until then, he'd never really listened to or shown any interest in music.

It was his sister who enjoyed music more. She was even having piano lessons. Alessandro had never been interested, but out of the blue one day he asked me what song I liked. The first thing that sprang to mind was the theme tune from
Titanic
; I didn't think any more of it. A few days later, he amazed me when he'd actually learnt how to play it on his keyboard. He played the whole tune to me really well, causing me to shed a few more tears, but this time they were tears of joy and happiness.

Thankfully, his chemotherapy went really well, and after seven months we were able to go back home to Gibraltar. I was so pleased as I was missing my daughters and had missed out on my youngest taking her first steps.

On the plane back, I explained to Alessandro that in Gibraltar it's quite unusual for children to have cancer and some kids might make fun of him due to him losing his hair. Thankfully, he said, ‘It's their problem, not mine.'

He really made me feel so proud of the way he dealt with the whole situation at such a young age. As soon as we arrived back, instead of going home, he wanted to go straight to school; this was a first. He was so keen to see all his friends and teachers who'd supported us while we'd been away. Alessandro had spent his twelfth birthday in England and his school friends had made him a lovely birthday card. His attitude had always been strong and positive and, although he doesn't remember much about England, we made some very good friends while we were there.

As soon as I could, I arranged for him to have piano lessons as I wanted him to be able to read music properly, even though he was already playing songs using his PlayStation. Alessandro started his lessons just five years ago and has already completed stage six, which he passed with distinctions; there are only eight stages in total. He's entered local competitions and has always come away with a prize. Last year, he won the top award for the competition of ‘Young Musician of the Year' sponsored by Albert Hammond, the famous songwriter. Alessandro actually composed the winning song himself. He has written a total of nine songs and has also played in various restaurants, hotels and
pubs.

He is now seventeen and is a very noble and good kid, not your normal teenager. He even helps around the house and is an A student in school. Alessandro is currently studying music for his A-levels and wants to go to a music university in London to further his studies.

He never really likes to talk about his cancer or the treatment; he just says that it was his past and it's his future that he's concerned about. His view on life is to just get on with it and leave the past where it belongs. He now wakes up playing the piano and sleeps after playing the piano. Music is his whole life, and who knows, maybe if he hadn't got cancer, we would never have discovered his natural hidden talent.