by Chris Geiger
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.
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 blur
red. 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.