My Treatment Long Version
(Short Version)

Diagnosis It all happened quite quickly, it started with a small ulcer on my tongue, after several trips to the doctor the ulcer still would not heal and was getting bigger and more painful. After about 3 weeks and by now not managing to eat very much, I was referred to a consultant. I saw the consultant quite quickly and looking back now I think he knew exactly what was wrong as soon as he saw me, however he reassured me everything would be alright and said that a biopsy should be taken. Half hour later and having endured a most painful experience I was told that the results would be back in a week. The following week seemed to go very slowly and I was on a roller coaster ride between yes I have cancer and I am going to die, to don’t be so silly it is just an ulcer and it will get better. The days passed and the area on my tongue where the biopsy was taken did not heal and the pain was unbearable. So I was not surprised when the consultant told me that I had tongue cancer.

Operation

A date was set for my operation on 3rd October 2005, I was not nervous about what was about to happen to me, I was very positive but this would be my first visit to a hospital so the unknown was a bit scary.

When I arrived in hospital all the staff were very caring and I felt relaxed. My first day was spent going though my operation, being measured weighed and marked up, had X-Rays and MRI scans. The MRI scan was quite an ordeal, I laid on a flat hard bed and my head was held tight then the bed was put inside a confined circular MRI scanner and I had to lie still for ½ hour, not one of the most pleasurable experiences I have ever had. My first night in hospital was peaceful and I felt ready for what lay ahead. I was discharged over the weekend as my operation was scheduled for a Monday.

Sunday arrived and it was time to go back to hospital, this was the most difficult trip I made to the hospital, going in the car I was looking out of the window wondering if this was the last time I would see home and travel on this road again. When I arrived at the hospital I was fine although I was a bit worried as I had showered and all the marks they had put on me for the surgeon had been washed off. I was made comfortable and tried to eat some food but the pain in my mouth was too great.

Monday 3rd October I was woken up at 5.00am to shower and get ready for theatre, at 6.00am I was taken on trolley and was feeling very relaxed I think the nurses had put me on plenty of sedatives, the last thing I remember is being in a room just outside the operating theatre and looking though a crack in the door and seeing lots of activity, than I was out like a light.

It seemed like the next second but it was 12 hours later and the operation was over and I was being taken to intensive care, I woke up about 1 hour later to see my wife. Although I had the operation explained to me several times I don’t think I quite understood what it meant, I just thought I would wake up and sit up in bed, but unfortunately that was not the case. My left leg was bandaged from my knee to top of leg and an epidural was in my leg, my leg also had two drain bags in it, my left arm was in plaster from my hand to elbow, I had tracheotomy in my neck and could not breathe through my mouth, so I could not talk, I had an oxygen mask over the tracheotomy in my neck and feeding peg in my stomach. Half my tongue had gone and been replaced with a flap of skin from my arm and the flap on my arm was replaced with a skin graft from my leg, the right side of my neck had been cut from my chin to my ear and then down to the top of my shoulder and I had two blood drain bags fitted on my neck. In my right arm I had three drips one in my shoulder one in my arm and one in the back of my hand I could hardly move any part of my body.

I could not talk so my only way to communicate was by writing. I then came across a word I had never heard before “Doppler” this word was then part of my life for the next few weeks. The Doppler was used to check that the flap that had been attached to my tongue had a blood flow, if there was no blood flow then the flap would not survive and the operation was not going to be a success. When used the Doppler made a beating sound and you knew all was well. Every time the Doppler was put onto the flap there would be silence until the beating noise could be heard, sometimes when the nurse doing the check was not quite sure were to position the Doppler and did not get the noise straight away there was an uneasy few seconds waiting for the beating sound.

Also a new phrase that I came not to like was “do you want suction” this was given when my coughing got too much due to the tracheotomy causing fluid to form in my lungs, it was a most unpleasant experience, when suction was needed a tube was passed though the tracheotomy hole in my neck and pushed into my lungs, whilst this was being done I could not breathe so if I did not time my breath at the right time I would be struggling to get a breath, so when I was asked “do you want suction” normally my answer was NO.

As I could not move and the tracheotomy made me cough I found it very difficult to sleep, I had to think of something to get me though the first few days, what did not help was there was a clock over the bed so I could watch the minutes tick by. I got though it by closing my eyes and thinking of what I would normally be doing at that time, if it was watching TV I would think of a TV programme then go though in my mind what the programme was about, I know it sounds daft but I had to think of something to keep my mind active.

After 48 hours I was moved from intensive care to a high dependency unit, you could tell when I first arrived the nurse did not really know what to do with me, there was tubes coming out of every part of my body. After an hour the night nurse arrived and took control and I felt much more relaxed, the first night was a bit up and down I could see the nurse was having difficulty stabilising me, first one alarm would go off then another, the nurse would then give me some more drugs and increase my oxygen and then the alarms would stop.

At 6.00 am in the morning my nurse in shining armour arrived, when I first saw her she was not dressed in a uniform so I though she may be someone just wondering in to chat to me, which was a bit unfortunate when I could not talk, but then when she came back dressed in a uniform I remember she was the nurse who looked after me before I went to theatre and was now here to get me moving, the first thing was to get me out of bed, this seemed like a massive step to me but she said “you will not be sitting in bed when the doctors do the rounds”. Getting up the first time was a big struggle and I was very giddy but somehow she managed to lift me up and put me in a chair and prop me up with pillows, I must have looked a right sight when the doctors came round as I could hardly sit up but they all nodded, said I was doing very well and could start to take out some of the tubes, over the next three days the nurse kept pushing me and I progressed I was able to sit out in the chair for longer periods but still I could not sleep.

Slowly I made more progress, then came the day to have the tracheotomy removed, this was going to be the big step for me as I would be able to speak again, although I had worked out that if you put a tissue over the tracheotomy hole I could sort of talk, So when the doctors came round I showed them my new trick with the tissue and they agreed to the tracheotomy being removed. I then wanted to keep on talking, talking was very strange as I knew what words I wanted to say but my tongue would just not move to say them but I could now finally relax and sleep, on the first night I went into a deep sleep for the first time in 4 days.

The following day as I was no longer having to have oxygen I was able to go for my first walk, it was only about 50 yards but seemed like miles. I could now be moved from the high dependency unit to side room on a ward as I did not need so much care, this gave me a great feeling of freedom. Now all the stitches and plaster cast were to be removed, this happened over a couple of days and as each day went by the wounds healed up but I was still not eating. As the week progressed all was going well I was waiting for the results of the biopsy taken on my glands, the results came a couple of days later and the doctor was able to put a good spin on the fact the cancer had spread but the spread was only small, this would now mean I would have to have radiotherapy, not good news, but was another hurdle to overcome.

I had now started to drink and eat again, drinking was not too bad if I took small sips but eating was much more difficult, the food had to be almost liquid and then eaten with a tea spoon, my first attempt was with a weetabix which took almost an hour to eat. It was very good to be off the liquid feed which had been put into my stomach though my feeding peg

At the end of the second week talk was about getting me home, then came my first big set back, the drain hole in my neck opened up again and over a couple of days got worse, little did I know at this stage what problems this set back would cause me later on. The doctors tried everything to make the wound heal but nothing worked, at first they thought it was an infection and then maybe a hole in my mouth that had not healed after surgery. The bad news was I had to stop eating and could only drink water this was a big step backward. I was also having tests for MRSI thankfully they always came back negative.

After another few days the drain hole in my neck was slightly better and I was able to go back on food again, This is when I met a another patient who had cancer in the jaw and from listening to her experiences and the amount of operations she had been through my operation had been minor, what gave me such hope was how positive and happy she was while fighting the cancer and having so many operations to deal with, she truly was an inspiration for me.

I was then allowed a trip home for the afternoon, when I had been in hospital under close observation the thought of going outside that environment frightened me, however the trip went well but I did not want to stop at home for too long and felt safe again when I was in the hospital. Another few days passed and my neck was a bit better, plans were made again for me returning home.

I was finally discharged from Hospital after almost 3 weeks, I still had to return to the hospital every couple of days to have the dressing changed. The first night at home was strange and again a bit frightening being away from the safe hospital environment, retuning to normal bed did make sleep difficult and it would be several months before I would get a good nights sleep.

Progress at home was slow, eating was still very difficult and frustrating, I was part eating and part peg feeding, the peg was left in my stomach as once radiotherapy started I would not be able to eat anything due to the soreness in my mouth and throat. After about a week at home my drain hole in my neck suddenly got much worse and I had to return to hospital, luckily I was not kept in but had to go to the hospital every morning and evening to have the hole packed, the pain at times was unbearable. The greater worries were what was causing the problem and would it now delay the start of radiotherapy. I spent the next week in and out hospital having X-Rays and tests to try and establish what was wrong, this was one of my lowest points. Finally the doctors decided I should just carry on with radiotherapy and maybe that would heal up my neck.

Radiotherapy

I was sent to my first consultation with my radiotherapy doctor in Early November 2005, it seemed so long since treatment first started and here I was again at the start of another long journey, the first doctor I saw was a junior doctor and it was the first time that the bedside manner of a doctor did not give me confidence, while he was waiting for the consultant to arrive he filled the time with small talk “You were lucky, if your tumour had been much bigger you would have lost your whole tongue” “Not sure but you might need Chemotherapy” “You know there is no guarantee with Radiotherapy” all things I would rather not have heard, my tumour was not bigger so I did not lose my whole tongue, I did not need chemotherapy and I would not be putting my body though radiotherapy unless I was convinced it was going to work. Luckily I did not see this junior doctor again for a few months so by then his bedside manner had improved.

My first visit to the radiotherapy department was to have the mask made that was to be fitted to my face so during the treatment my head would not move, also it would be used by the radiotherapy nurses so they could set up the radiotherapy machine before each treatment. Making the mask was my first experience of what it would be like to lie on a flat hard bed and not be able to move and then to have a mask put tight over your face, making the mask was not too uncomfortable as it was quick, cold plaster cast was put all over my face which got hot and set hard then the plaster cast was removed and a plastic face molding made. The second and third visits I had planning sessions where set up marks were put on the mask which took about ½ hour at a time and were more difficult as it made me feel very claustrophobic when the mask was on.

The actual radiotherapy sessions were not too bad as it was all over in 10 minutes, I had to lie on a bed the mask was fitted and the marks lined up with the laser on the radiotherapy machine, then the machine was switched on and all you could hear was a high pitched buzzing noise and you could feel nothing.

It was late November 2005 and I had 32 radiotherapy sessions over 6 weeks ahead of me, eating was still quite difficult and not very appetising. After the first session of radiotherapy my jaw was aching but I was told this was normal, I was warned that the radiotherapy could burn and I would get sore so after about 4 sessions I was not surprised that my neck was getting a bit sore but thankfully the drain hole in my neck had healed. As the days passed my neck got sorer and sorer and started to swell, after 6 days of treatment my neck was so sore I could not touch it and I felt terrible, I wondered how I was going to get though the 6 weeks. The swelling got so bad that the mask could not be fitted so I was referred back to my doctor and the problem with my neck had come back again I now had a large infection in my neck and radiotherapy had to be stopped. I was readmitted to hospital, this was another massive knock back for me, I had only had 6 radiotherapy sessions and had another 26 to go.

In hospital I was put on a high dose of antibiotics and the infection was drained, within 24 hours I was feeling much better the soreness and swelling had gone down and I was able to return home, this was thankfully the last time that my neck would cause me problems. I returned back to radiotherapy the following week.

The weeks passed having radiotherapy every day and the soreness in my mouth and throat got worse, my mouth was very dry and I lost all sense of taste as a result my eating and drinking got harder, my Christmas day meal 2005 was semolina and this was the last meal I had then until the soreness had receded in early February 2006.

Recovery

Not much more happened during radiotherapy I just got sorer and sorer until my last treatment on 12th January 2006, then as I was warned the soreness got worse for about 10 days, I was now unable to eat anything and even drinking water was difficult, but the worse point passed and I slowly started to get better, after about 8 weeks I woke up one morning and all the soreness had gone and it was a most remarkable feeling, a feeling I had never had before nor have I had since, if I could have bottled the feeling and sold it I would have been a millionaire. The feeling lasted for about a month I was on a constant high and all the time my eating was improving and for the first time since I first started with the ulcer I was enjoying food again and starting to feel well.

I started to do all the normal things again, go to visit friends, go to the cinema, go out for a meal, go to the pub, wake up in the morning with no pain. I went from strength to strength and each month that passed eating got better and pains got less and my fitness improved.

I still have to go for monthly checkups at the hospital, my neck is still a bit sore and my mouth gets very dry sometimes, I can not eat anything which is tough or needs allot of chewing but I can get by with most foods if have with plenty of sauce or gravy.

Me now

I feel almost back to normal, my taste has fully returned, I go out for a meal once a week and can eat most foods, I feel fit well and healthy, I go walking a couple of times a week with a local walking group and get down the pub on a Friday for a pint. I use my leisure time to the full and make the most of every minute I have, over the past few months I have been on holiday to Yorkshire and had a week on a canal boat I have spent the weekend at the Reading music festival, been on an off road challenge day and driven a tank, 4 x 4 truck, beach buggy and hover craft. My quality of life is good and I am happy to be alive.

I will be eternally grateful for all the doctors and nurses who cared for me and for all the support my family and friends gave me during my treatment. One thing that stuck in my mind from the first time I was told that I had cancer was that because treatments had been developed by organisations such as Cancer Research UK my cancer was treatable, if I have presented myself 20 years ago with this type of cancer very little could have been done for me, so I made a promise to myself that once I was feeling well and healthy again I would raise as much money as I could for research into cancer, so please support me in whatever way you can to help me raise money for Cancer Research UK.

Thank you for reading my story, if you are going though similar treatment and would like to ask me any questions please send me an email.

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