In writing this I want to show that although for a period of time life was so bad, I always had hope. I eventually came through the dreadful experiences that cancer can bring and now have a normal healthy life with my family.
In June 2007, being a man, I had delayed going to the doctor with a ‘blood in poo’ problem. Fortunately once seen, the GP sent me to have a colonoscopy with an orange sticker on the notes (be seen within 2 weeks). During the colonoscopy, it looked really messy and bloody as they took the camera up. They took a biopsy and they had me return to see the consultant who, after having another look, said I should go to see a surgeon.
The surgeon had another look and said although no cancer was shown on the various biopsies, he thought it looked cancerous. The best way forward was to chop a section of the colon, so we arranged for an operation as soon as possible. I went in for the operation and was made ready. One of the most distressing things that happened was that two ladies came in with a pen and asked what side of my belt would I like to have the bag? No-one had told me of any possibility of a bag after the op. The evening before the operation I had a CT scan, and that showed unfortunately what was described to me as ‘two cricket ball and two golf ball size areas of cancer’ on my liver. My colon surgeon knew and was trained under Mr Merv Rees, and between them they said the liver was inoperable in its present form. The colon surgery was cancelled, as I needed to start chemo as soon as possible to shrink the tumours. All this seemed to go over my head and I really felt that I was going to come through.
We went for the first chemo treatment and came home a bit depressed – five people went through all the nasty things that chemo does to you, and no one said about the good results that we could expect. The chemo went to plan – and did not affect my immune system or my bloods, which amazed the oncologist and nurse. My CEA level came down dramatically and that seemed to please everyone. Near the end of the fourth session, I had another CT scan to compare with the original. Both the surgeon and the oncologist telephoned me the same day as they were excited that chemo was working. They gave me the sizes – in effect the tumours had reduced to 12.5% of their original size. I was still not suitable for operation, as one piece was still attached to a main blood vessel, but the chemo was still working.
I went to Basingstoke for an MRI scan and saw Mr Rees, who said, ‘Yes I can do it’. This was so good after the bad start we had to the chemo, when depression reigned. All the way through, Mr Rees has been so positive and confident. The day for the operation was set. Not having been in hospital and hardly ever going to the doctors, all this was very daunting. But somehow this confidence that Mr Rees had made it seem a normal thing.
They took 70% of the liver away to remove the tumours and a good area surrounding them. The remaining liver was not in good condition as it had been damaged by the chemo. So after I came round I was weak and fragile – I could do nothing for myself, despite the day before being fit and, as I thought, well. The attention I had in the ward was exceptional, after three weeks I thought I was well enough to go home. I lasted three days at home.
I was then rushed back into Basingstoke as I was just going downhill, so weak I could do nothing. The week in hospital recovered me enough to return home and stay there, being looked after by my wife who had to give up everything else she did to cope with me. I was prescribed a morphine painkiller, something that was to stay with me for 18 months.
It took four months until I was well enough, only just, for the colon operation – quite daunting after the liver resection operation. Another colonoscopy showed that the polyp had reduced so much that on the way in, it was not seen. That operation was performed in Chichester and went very well – I did not need a bag! The most painful part of it was the wind pain in the week after the operation. No pain killers worked on it, one just had to moan and eventually pass it.
In the July we went to Basingstoke for a check up, CT and MRI scans – and unfortunately (or fortunately depending which way you look), they found a small piece of cancer that was old but had been missed, as at that time was too small to be seen on the original operation. Mr Rees said that piece may have been just a piece too far for the first operation. It was a shock, as we thought we were over the operations. This was less dramatic as it was only 10% of the liver, and not the 70% of the first resection.
So this was three lots of major surgery in a very short time. I still did not have any energy as my liver functions were not performing well. I do remember asking Mr Rees, “Will I ever get back to more normal energy levels?” “It will take time,” he said, “your body has been through so much stress – give it time”.
It took until December to get any strength back. I had another CT and MRI scan and a blood test. The scans were completely clear and the blood test showed the CEA count being nothing.
I had been on morphine painkillers since January and found that I was addicted (or, as I think they prefer to say, I was morphine-dependant). I tried and tried to get off to no avail, gradually reducing the intake, but having to go back up when the withdrawal symptoms became unbearable.
Christmas came, and I started a cold which became pneumonia. All this was much harder to cope with when my liver was not working properly to give me much energy. Late in February, although still weak, and having tried various ways to reduce the morphine, I decided to stop taking the tablets. I went through two weeks of terrible pain and other symptoms. We came out of it, but this shock and stress seemed to have an effect on the liver. We found that I had a build-up of fluid in my stomach and chest. The GP sent us to our local A&E, after waiting five hours in pain they were unsure what to do and sent us home. “We do have a large file of notes on you and complications of liver resections are not that common,” they said.
We managed to arrange an appointment in Basingstoke with Mr Rees. He said the best thing would be to come into hospital again straight away and they would try to sort it out. They started with tablets and replacing the human albumin that was being lost. The fluid was not going down, so after more CT scans he decided to drain it with tubes. It was about a week before enough was drained and I was stable to go home.
Since December I had not been able to eat much, so my weight was reducing. All the bugs and pain did not help – or the hospital food! I gradually got weaker and weaker. In the next two weeks, the fluid built up again and without knowing I developed an infection in my chest. This became a major problem on the Sunday and by the evening I did not know what was happening. My wife told our sons that they should come and see me, as the situation was getting much worse. On Sunday evening, the out-of-hours doctor was called. My chest was exploding with the fluid. The Doctor was very positive that I needed immediate treatment, so we had a blue-light ambulance journey to hospital.
When we arrived at Chichester Hospital we were amazed to see our consultant, who has been with us from the beginning. He had just finished an emergency operation and was available to take charge of my case and get things moving very quickly. He later wrote to the GP and said I was very close to death’s door. My wife already knew that! They very quickly analysed the blood samples and decided what antibiotics to use.
After two weeks I was still extremely weak, weighed just over 50kg and still had a fluid problem that needed constant draining. They said as the liver was not working properly I needed a Denver Shunt to go from my stomach area up to my left shoulder to recycle the fluid. The hospital bought the only one available in the country at £1000.00, and sent me home to recover enough for the operation to insert the Shunt.
At this crucial point my faith came into play strongly. I knew that I was going to come through but I needed some help from God. Throughout all this time we had many people praying for us. I say ‘us’, as cancer does not just affect one person but everyone close to the patient. This came to a head two weeks after leaving hospital, when we had several people concentrating prayer over me. One of them was a friend who was a bowel surgeon! I changed – my energy started to come back and the fluid reduced. So much so that the surgeon looked at me and said “Your complexion has suddenly changed and you now look back to normal.”
The Wednesday after this I had an appointment with the Chichester surgeon to see if I was fit enough to do the operation for the Denver Shunt. He examined me and was amazed. “You look fit,” he said, “and do not now need the Shunt as the fluid has gone.”
I had a colonoscopy with the same surgeon. Everything was really good and I could see the ring where the colon was cut and joined. Now my inside on TV did not seem strange to me.
In July we went to Basingstoke for CT and MRI scans and blood test results. When we walked into the consulting room Mr Rees welcomed us with, “You’re my little walking miracle man”. Then we went back in late November 2009 for scans and a blood test again. This time he said, “It is a miracle what has happened to you. There is no sign of any problem on the liver, it is back to a normal size and your bloods are very good.” A normal tumour count would be 0-5 – mine had been up in the high 200s when they were pleased how much it had dropped during chemo – but now my count was 1. The liver function was nearly normal.
Now I am back to normal energy, living a normal life – very thankful to Mr Rees, Miss Welsh, the liver team at Basingstoke and my original surgeon in Chichester who arranged the right route for me.
I have been fortunate enough to meet with so many other patients who now live full and normal lives, through the pioneering work in liver resection of Mr Merv Rees. We all thank him for that.
Written by Mr Derrick Tyler