The Cancer Survivors Club (15 page)

It all started quite dramatically for me two years ago in May. It was a normal Saturday morning and I was out with my family shopping. Around 9:30
A.M.
, having only just arrived at the shops, I started to feel unwell. I was experiencing pains in my tummy and felt hot and really quite uncomfortable. We cut our shopping trip short and quickly made our way back home. By the time we arrived, I was in quite a lot of pain, feeling even hotter and very light-headed. For the next forty-odd minutes, I was literally rolling around on the bedroom floor, as the pain increased. Eventually, I asked Tracey, my wife, to call an ambulance, as I simply couldn't handle the sheer agony any
more.

The ambulance crew soon arrived and suggested they take me to the local Accident & Emergency Department. My brother also came over to look after our daughters, Jessica and Chloe. I was soon loaded into the ambulance, and Tracey and my parents followed behind in their car. On the way to the hospital, the ambulance crew gave me something for the pain. I was now shaking uncontrollably and felt absolutely awful. On arrival, I was given some morphine and the doctors examined me. Various tests were carried out and they slowly got my pain under control.

About an hour and a half later, a doctor explained that they were unsure what had caused my problems. They felt as the pain had subsided it would be safe for me to go back home. I'd fully expected they'd want to keep me in for the night. Anyway, I got dressed and made my way back out to the
car.

I was still feeling very fragile and tender, making walking difficult. In the car park, I spotted the ambulance crew who'd helped me; they were surprised that I was going home so
soon.

For the rest of the weekend, I was in a lot of discomfort, feeling feverish and off my food; most unlike
me.

It soon became obvious on Monday morning that I'd be unable to go to work. I couldn't even get my trousers on as I was still in so much pain. I needed to see my local doctor as clearly I was unwell; it was obvious now I had more than just food poisoning.

I was lucky enough to get an emergency appointment and saw the doctor early. I explained to her what had happened over the weekend and she felt I needed to go back to the hospital. To her, it was clear I was unwell and my symptoms concerned her. I was given a letter and she explained I should go to the Surgical Admissions Ward, which I found worrying.

When I was admitted to the ward, both Tracey and Mum were with me. A doctor examined me and requested more tests and for an x-ray to be taken. I was also given a drip as I was dehydrated due to being unable to eat or drink much. The doctor came back later with three medical students, who all took it in turn to examine me. The doctor asked the students to explain what they were doing and looking for. When the doctor asked one of the students what she thought the problem was, she said she thought I had peritonitis.

‘Spot on,' the doctor replied. ‘What makes you think that?'

‘Rebound tests show a reaction, he's hot, dehydrated and has abdominal pain.'

‘Good, but there is one thing you have missed: look at his skin colour. He's yellow, almost jaundice-like, and the whites of his eyes are yellow, too. Mr Mason, you need an operation quite quickly to remove your appendix; we'll aim to have you in theatre by midnight tonight,' the doctor said, while the students gazed at me in silence.

I could hear the blood rushing around my head and my heart beating really fast now as the shock of his news sank
in.

The reality was that I didn't get operated on until the Tuesday morning, at around 9:30
A.M.
This was nearly four days after my appendix had perforated. I was really unwell during the night, so it was decided that I should have some intravenous antibiotics.

The surgery went well but wasn't straightforward. While I was still in the recovery ward, a doctor came to see me. He said the laparoscopy had taken around an hour and a half longer than normal. The appendix had stuck to both my ileum and caecum, which had to be cut away. Apart from that, the operation had been a success. Later, I was moved to a general ward for recovery, where I spent the next week on high-dose antibiotics and sporting a stomach drain. I was then finally discharged.

The events of the last week had been a shock and totally unexpected. The knowledge that I was on the mend and the operation was behind me aided my recovery. Three weeks after the operation, I returned to work and started to get back to normal. I began to exercise and was eager to put the whole horrible appendix experience behind
me.

Slowly, I felt unwell again, but just assumed I'd maybe been pushing myself a little too
hard.

To my surprise, I received a letter asking me to attend an out-patient appointment at the colorectal unit at the hospital. The same day, I received a phone call asking that I also have a CT scan. I assumed this was simply a routine procedure that everyone had and was impressed with the aftercare service the NHS offered.

As it was a late afternoon, I attended the out-patient appointment on my own, on my way home from work. It was a perfect hot July day and the waiting room was full. Typically, all the appointments were running late. I sat quietly reading old magazines and people watching until my name was called. I casually made my way to the appointment office and was introduced to the specialist colorectal nurse and the consultant. Their mood was a little sombre but I didn't think too much about it. After some polite chat about the weather, they explained that my appendix had been sent to the lab for a biopsy. This was routine procedure after an operation, but they'd found a problem. My heart started beating a little faster as beads of sweat began forming on my face. The lab found that I had a mucinous cystadenoma with associated low-grade mucinous adenocarcinoma. I had no idea what that meant but the doctors sounded confident.

I remember hearing the word cancer being mentioned. Stupidly, I just couldn't think straight as I tried to comprehend everything they were telling me. I also remembered being told that I'd need to have a CT scan before they'd know more. I told them I already had an appointment for this. The most shocking news was they felt I'd need a colonoscopy and very likely another operation called a right hemicolectomy. Now I was very confused and sweat was pouring down my face. He said that a hemicolectomy was an operation on my colon, which they would do by making an incision via my abdomen. The CT scan, along with the colonoscopy, would give doctors more of an idea of my problem, enabling them to put a care plan together. I was briefly examined and they were happy with the way I was recovering from the appendectomy. I walked back to the car in a state of shock. I was thinking I'd just been told I had cancer. I was in such shock I didn't really listen or understand exactly everything they'd
said.

As I drove home, typically the roads were congested. It was very hot and I was fighting back the tears. My biggest concern now was how I was going to tell Tracey. I arrived home to find her and the girls enjoying the weather in the garden. Tracey looked stunning sunning herself and the girls were happily playing together. I discreetly asked Tracey to come inside as I wanted to
talk.

‘Come inside?' she queried. Instantly, she guessed something was wrong.

We went into the front room and I burst out crying before we'd even sat down. I explained what had happened at the hospital. Tracey kept asking questions I couldn't answer as I hadn't really absorbed everything I was told. She was obviously upset and I felt so bad for making her cry. The girls kept coming inside as they could sense there was a problem but eventually we managed to get them to go back outside and
play.

I called my parents and brother and asked if they'd come round. That evening, I told them my news and the three of them were devastated. Both Tracey and I were now feeling very down and depressed. The shock and mental stress of the appendectomy was only just subsiding and suddenly I was told I had cancer. I don't mind admitting the news had really stunned me. I felt sick to the pit of my stomach. So many things ran through my mind. The obvious first questions I had were ‘Why me?' and ‘Am I going to die?' I'd known people who had suffered from cancer, fought hard, but still died. I didn't want to be like
them.

The day of my CT scan appointment soon arrived. I sat in the waiting room; thankfully, only a couple of other people were there. A lady sitting opposite me was clearly undergoing chemotherapy. Her skin was grey; she looked very thin and wore a headscarf. I wondered if that would be me soon, but without the headscarf, obviously.

A week or so later, another appointment letter arrived; this time, I had to see a consultant and specialist nurse. The hospital called and suggested Tracey accompany me. This was mainly to make sure we came away from the meeting fully understanding everything that had been discussed.

We arrived at the hospital and made our way to the Colorectal Ward. The wait to be seen felt like years, not minutes. We walked through the consultant's office and into a lounge, well, a very comfy little room anyway. My heart sank. I instantly knew what this all meant. The consultant did most of the talking. He explained that the CT scan had shown a mucinous-like jelly, coating my organs in the abdominal cavity. He said it was a very rare type of cancer, known as Pseudomyxoma Peritonei (PMP). It only affects one in every million people and can't be treated by conventional chemotherapy. Instead, the usual treatment for PMP is a huge operation known as the ‘Sugarbaker Technique'. Due to the seriousness of the operation and the expertise required, it would have to be performed at a specialist centre in Basingstoke. This I later found out was one of only two hospitals in the country that could do the operation at the time. The Christie Hospital in Manchester was the other.

Tracey was by now crying and I was also very close to tears myself. This was bad. ‘So what are my chances?' I asked.

‘You're a prime candidate for the operation
–
fit, young and well
–
but people can die from this condition. The other thing we must stress is that it is a very slow-growing cancer.'

Everything else he said became blurred again. However, we were given a very useful information booklet about the condition and contact details of the specialist nurse in Basingstoke, who would now be looking after me. Yet another appointment was made, this time to meet the team in Basingstoke. Still trying to take in the news, we composed ourselves and left the hospital. This was easily the lowest we'd ever felt. We got outside and Tracey broke down. I held her tight and we cried together. We felt like our whole world had just been shattered.

After several weeks of waiting, I finally attended my first appointment at Basingstoke in August. The consultant asked me to explain the sequence of events leading up to my appendix perforating. He examined me and discussed in detail the various aspects of PMP, while looking at my CT images. He explained that PMP was very slow growing. I had evidence of it around my liver, stomach, spleen and in my pelvis. The right side of my abdomen was pretty clear as this had probably been cleared out during the appendectomy. He advised that the small amount of fluid found had probably been in my abdomen for around five to ten years. He said the operation was known among PMP sufferers as the Mother of All Surgeries (MOAS). I let out a nervous laugh, while the blood drained from Tracey's face. He felt I'd probably need a number of procedures, including: a midline laparotomy with excision of the umbilicus, a stripping of my diaphragm, a diathermy liver capsulectomy, a cholecystectomy, a greater and lesser omentectomy, and either a diathermy capsulectomy of the spleen or spleenectomy. Also I'd need a right hemicolectomy or possible excision of the appendix stump and finally a possible anterior resection. It all sounded double Dutch to me. I might as well have been listening to one of those ‘Teach Yourself' language
CDs.

If all the disease was successfully removed, it was thought an hour of intra-operative chemotherapy and possibly some post-operative chemotherapy would be all that was needed. It was decided a second CT scan should be done in October, as there is often a lot of fluid left in the abdomen after the initial appendectomy and there was a slim chance my body could reabsorb this fluid. If the fluid remained or grew, however, I would need to go ahead with the operation.

This meeting had been far more upbeat and positive. The team appeared confident that something could be done, but obviously they could give no guarantees. The statistics showed two out of three people who had this operation would remain disease free at three years. The odds didn't seem totally stacked against me after all. Both Tracey and I felt much better and a little happier than we had for a long
time.

I had the second CT scan and, unfortunately, the fluid had not been reabsorbed, so the inevitable (MOAS) operation was definitely on. It wasn't something they'd rush to do, which gave me time to prepare.

‘The letter' arrived in December
–
some Christmas card that was. I was to be admitted on 31 January and my operation would go ahead on 2 February. Despite this news, we did have a great Christmas. We made an extra effort to ensure we had fun. We organized games and a Christmas quiz to liven up the whole day, which the girls really enjoyed. We spent New Year's Eve with a group of friends at our local rugby club. When midnight arrived, we had a few tearful moments before we got on with the task of enjoying ourselves.

Throughout January, I kept busy at work, preparing for the six months I'd be out of action. All the time I was fully aware that the MOAS was looming ever closer, which I obviously couldn't stop thinking about. On my last day at work at the end of January, my colleagues gave me a great send-off. I was very emotional, yet it was also a brilliant and memorable
day.