AK's story

AK's story is told in his own humourous style. Be prepared for a long read...

My small mouth ulcer

I developed a small mouth ulcer sometime in January 1998. I treated it with Bonjela and it seemed to go away only to come back few days later in a different place, not far from the original spot. Since it sort of worked, I continued with the treatment. However within a short space of time (two, three days), the original ulcer in the bottom of my mouth right opposite my lower incisor teeth turned into an abscess.

As I was due to see my dentist for my six monthly checkup (okay, perhaps 4-6 weeks late), I contacted his practice to make an appointment. The earliest appointment was in about a week and a half. Meanwhile my abscess developed a small black head. This black spot had a strange behaviour pattern. It would grow in matter of hours and then lay dormant for days. My dentist diagnosed a nasty infection and prescribed a strong antibiotic. Five days later when there was no improvement and made an appointment for me at St Luke’s the following Tuesday. He also put me on a weaker antibiotic, at my request as I had noticed irregularity in growth associated with the antibiotic. Without antibiotic it would flare up and grow, and with it, it would stop. (Could be it was growing down and not out.)

Diagnosis

Thus sometime in March 1999, I passed into the hands of Mr Mason and Miss Keshani at the Maxillofacial unit at St. Luke’s. I would mention all the doctors and nurses (wonderful people) but most names do not even register when you think you may have cancer. After the first visit and the photographs I knew what it was without anybody having to tell me. But like a drowning man clutching at straws, I asked Miss Keshani. She confirmed that I had the worst nightmare of any human being, cancer.

Then followed a series of x-rays, further visits, and involvement of Mr Foo, the plastic surgeon, Mr O’Sullivan and Dr Coyle, the radiotherapy oncologist. On those visits everything was explained to me about the operation, the following treatment and the preparation of my mouth leading to the operation on April 16th. (D-day in more sense than one). On the medical side: straightforward, calm, run of the mill, you could say, while on the other side, private and family life: total chaos. Private life: a holiday to be cancelled, work to be arranged, getting married (got married on the 11th of April) and lots of things to see to. Family side: tell them gently and be strong for them.

Remove two teeth

It was decided by Mr Mason to remove two teeth on lower right and one on upper left, which had deep pockets down the side of them, and a cyst above first upper right which turned out to be quite large. Some experience that, I can tell you. Being very near the bone, the teeth would not go numb. Few injections later - still not numb. But they had to come out and so they did (taste of things to come). Ironic, you know, as this would mean that, after the operation I ‘woulf’ practically have no teeth to meet together. This was done to prevent infection and other nasty things to happen when I had to undergo radiotherapy. (Magical word - radiotherapy. It meant, everybody was sure I would get that far). Next followed the CT scan, Tuesday 14th.

The Surgery

I was admitted to Bradford Royal Infirmary on the Easter Holiday 15th April 1998 at 10:30am. There I met Miss Elisabeth Taylor and Mr Tommy Hancock. They were not the first, nor the last, wonderful people in a long chain of people I was still to meet. Lots of paperwork to fill in, Elisabeth took care of that. Both of them were gently preparing me for what would take place tomorrow. A doctor came to take some blood samples, then a visit from Mr Foo, Mr Mason and Mr O’ Sullivan.

They noticed that I had got a rash on my left wrist (from wearing a cheap watch?) over the projected transplant area. Mr Foo debated whether to use the right wrist instead. Mr O’Sullivan told me “Do not let anyone take blood out of any of your arms”. In any case the left was used. The anaesthetist affectionately known as the ‘gas man’ came to see me. We had a chat and he explained as to what would happen the next day. Others came: lung people, pain people, many. So I passed the day, never left alone. My Susan (my strength) was there, and I was glad of it, not to be left alone with my thoughts.

Of Thursday, I do not remember much. The op took between eight and ten hours. I remember some parts of the evening. My Susan, Nigel and Tracy came to see me that night, I was drifting in and out of sleep, and so I did not talk to them much. (Funny that - talk? Ha, ha.) First 24 hours the nurse that was present all the time would check on my temperature, blood pressure, and the flap, (transplanted piece from my left arm). Every 15 minutes. I was even told by the nurses that I would end up hating them for disturbing my sleep. Try and sleep if you can! I was told about it, so I knew what to expect and accepted it. It was unbelievably hot (Costa del BRI) as I lay under some kind of space blanket filled with hot air, and tubes, wires. They were everywhere; I counted them out of curiosity - 15 attached to most parts of my body. I do remember at some stages a lot of nurses around me. Second 24 hours same checks as first, but every 30 minutes now. Third 24 hours, same checks, but now every hour. Things were definitely looking up. By the third day, I was now more wide-awake and aware of what was going on around me. I was only able to communicate using pen and paper, but still communication!

Problems with my ‘trachy’

I was having some problems with my ‘trachy’, mostly at night. (Tracheotomy is an operation to provide a patient a hole to breathe air through during an operation or afterwards when they are recovering. It’s also a guaranteed way of keeping the patient quiet.) A tiny piece of phlegm got lodged in the air pipe causing agony. I thought, “this is it, can not get any air into the lungs, my last minutes are here”, but the nurse, cleared the blockage by inserting a suction tube, and sucking out the obstructing bit. Later, I learnt how to do it myself. One night I thought my last moments surely had come. A bit of phlegm had stuck in my lung or windpipe and I could not get it out, I rang the bell for the nurse, but Andrew could not get it out, I was wheezing, could not get air into my lungs or it seemed like it. I got panicky and that made it worse. Andrew tried to use a different method to ease the problem, but I would not have it. I just wanted to breath, ok, and go back to sleep. I really gave poor Andrew a hard time, for which I apologise. The duty doctor got involved and we still could not shift it. The suction tube was coming clear, maybe they assumed there was nothing there, I do not know, I knew there was something there blocking or part blocking my airway. However, as the night went on it got easier and easier. My apologies to both of you. One result of this was that I learnt how to use the suction tube real good. I found out their different sizes, all colour coded. But it got better as the time went on.

Gulliver unshackled

As time went on, I started to loose some of the wires, pipes and tubes. First to go was some sort of monitor and the wires that go went it. Second was the pain control gadget (did not use it much) and my right arm was free. Next the thermometer probe, will not tell you where that was. Then the urine tube, and you can use your own imagination about how it got into my bladder. Later, the plaster and the drain on my left arm, almost a free man now. The drain on my neck and the feed tube to my stomach were left in, but it still meant that I could get out of bed.

The machine that provided liquid food direct to my stomach drove me crazy, I was fed 8 hours during the night and off the machine for 16 hours. The machine pump makes a gentle noise every few seconds (like a mooing cow). After a couple of hours I was ready to throw it out of the window, but I learned to put up with it, as it was my only means of food! There were small problems with an upset tummy, but that passed.

Being able to get out of bed meant that I could start to look after myself. I spent a lot of time keeping myself clean. Fifty percent of my time was spent on keeping my mouth clean. Rinsing and wiping it with sponges dipped in Corsodyl. In the early stages, with the swelling in my mouth, I used sponges rather than a brush to clean my teeth. I was rinsing my mouth constantly and especially after eating any solid food, which I started to consume when the swelling went down a bit. Rinsing of the mouth was very important, as the part that was grafted could not detect particles of food. Therefore they lodged in my mouth, under my tongue, side of gums and cheeks, and I could not feel them. Around the 8th or 9th day after the swelling was down quite a lot, I was able to use a tooth brush and tooth paste while still continuing to rinse out my mouth. By the 11th day I was eating more solid food and so my liquid feed was stopped and the stomach tube taken out. On day 12, I was released from BRI. Mr Foo threw me out 2 days earlier, (for good behaviour?)

Mental ticks

I was home by the end of April. The time had come for me to learn to drink and eat again. There were only few solid foods that I had eaten in hospital. I started with drink - I attacked a glass of beer. It went down a treat. No problem there, a mental tick against beer! I made sure that over the coming days I had different food at breakfast, lunch, dinner and supper each day. The idea was to collect as many mental ticks as possible and isolate the problem foods, to be concentrated upon later. There was no problem to speak of, except for the lack of teeth, which made chewing long and hard work. But in no time at all, I was eating all types of foods. I was also brushing my teeth after every meal and rinsing my mouth with Corsodyl without any trouble.

Radiotherapy preparation

I received an appointment letter from St Luke’s to go and see Dr Joshi. He cleaned my teeth very thoroughly (never have they been cleaned like that by any dentist of mine) and showed me how to clean my teeth with an ordinary toothbrush, another bottle washer type, and a single-tufted one for cleaning the neck of the tooth. All this was in preparation for radiotherapy. He told me that, when I will undergo the radiotherapy I should dilute the Corsodyl with water 50/50. In May I made several visits to Cookridge Hospital to make a mask and spend a session on the simulator in preparation for radiotherapy in early June. (Nobody asked me if I wanted to audition for the Phantom of the Opera).

A gristly time

At the end of May, a big setback for me. After the operation, to build my strength back I decided to decorate our bedroom, do maybe an hour or two a day, nice and steady. Everything went according to plan until the Friday before my radiotherapy started on Tuesday. In my last push to finish decorating, I decided not to cook and so ordered a Chinese meal to eat at home. Spare ribs for supper for myself. It all went well, the ribs were of an exceptional quality and I was on my fourth rib when disaster struck. A large piece of gristle got stuck in my throat. It would not go down, nor would it come out. I finished up in casualty at BRI, 10:00 pm, in absolute agony, convinced I had a large chunk of bone in my throat. There I saw the duty doctor, x-ray followed and I finished up on ward 18, one floor below the one where I had spent 12 days. I was given an injection to relax the throat muscles to allow any gristly bits to be swallowed. The doctor on ward 18 thoroughly examined my throat and he was sure that there was no obstruction. He diagnosed a severe scraping of the lining of the gullet, hence the pain. All this, and the radiotherapy was 4 days away.

So I was back at square one, unable to eat any solids and only just able to drink water. Cleaning of teeth was no problem, by now I got into the habit of cleaning them at least four times a day and I have seen no reason to stop. Mentally I went back to the first time, when I was learning to eat solids and followed the regime (only this time the beer came last). My fault had been in not being careful, and daydreaming while chewing a bone. I was determined to eat. I would eat and swallow till I could not stand the pain any longer, and only then stop. I was worried about the radiotherapy, three days to the first session, but the nice people at Cookridge assured me that my throat would get better. (So it did, by the 10th session I was back, almost back to normal eating.)

Radiotherapy

I was a bit worried about the radiotherapy. It’s ok to go through the simulation, but the real thing? This was 20 days, 20 sessions. So it was Mondays to see the nurse. The nurse gave me a lot of advice about skin care, mouth care. Lots of application of cream to the skin (area being treated) mouth rinsing with saline solution and gargling with aspirin solution. Warnings about dry mouth (glands not producing enough saliva due to tissue damage), and how to ease the problem, and cope with it. Tuesdays I saw Dr Coyle or Dr Heath. The therapy was not bad at all, in and out and done in five minutes, unless the machine broke down and then it was in and out in two or three hours. The first two visits with the doctors were academic, as nothing was happening to me at that time, bar a slight touch of pink on my face. This settled into a nice routine, brushing my teeth after every meal, rinsing my mouth with salt water, rinsing morning and night with Corsodyl, apply fluoride gel at night to my teeth. This continued till my 9th day of radiotherapy.

Friday – no problem. Saturday, the same. Sunday morning, a slight sore throat. By midday, bad sore throat and painful tongue. By nighttime, very sore throat and the tongue had acquired a winter fur coat and there was white coating on the inside of my mouth. I had some soluble CoCodamols. Did not do much good. Food out of the question, brushing teeth, out of the question, Corsodyl rinse, out of the question. But I could still rinse my mouth with salt water. It seemed to me that salt water eased the pain a bit. Cannot remember how I slept that night, if at all. By morning, the corners of my mouth were slightly cracked and healed over.

Everyday for the radiotherapy I had to put a mouthpiece in my mouth and a mask on.
Subsequently, every morning the healed corners of my mouth would split open, and during the day healed up again. On Monday the nurse suggested I keep taking the CoCodamols every 6 hours. No good. Tuesday morning, no food since Sunday, in pain, seen Dr Heath and she put me on morphine (Oramorph). One dosage every 4 hours. This of course did not help my sore throat or the ulcers on my tongue, nor the infection on the inside of my mouth, just killed the pain. I found my best hours to take it were 7am, 11am, 3pm, 7pm, 11pm and 3am. The morphine helped in one respect, it at least allowed me to quickly brush my teeth, but food and drink was still a problem. Stopped rinsing with Corsodyl, but continued with saline solution. I was given WAYHE suspension to take 20 minutes before a meal or any food, but I found that it interfered with the taste, and so after a couple of times I gave it up. Few days passed, and it was no good, I have seen Dr Heath and she doubled my dosage of Oramorph, and at the same time I saw Julie (Dietician) who suggested I try Forti-Sip (now we were cooking with gas).

I kept to the same times for my medicine, and followed 20 minutes later with Forti-Sip, and a cleaning of my teeth, the Morphine dulled all the pain, so it was possible to brush them, and now I restarted to rinse with salt, aspirin, Corsodyl. I found that my normal toothbrush, the bristles spread outwards when pressed onto the teeth, and the points would dig into the ulcers on my tongue. Some pain, I tell you. So I found the smallest baby tooth brush there was and that worked alright. I also found that the ulcers some days were more active on one side than the other of my tongue. The trick was then to brush the upper teeth first, I always brush them first, as they are not affected at all, then the side that hurt the least, and then the bad side. Dr Joshi had advised me to use any toothpaste as long as it contained fluoride. Almost toothpastes are mint flavoured, and it’s the mint that hurts the ulcers in a hypersensitive mouth. I used mostly Sensodyne F. When it caused me pain, I used Clynomyn. I stayed clear away from toothpastes advertised as, leaving your mouth with a tangy refreshed feeling. To me it meant, pain.

The dietician suggested four Forti-Sips plus two pints of milk per day would be about right for a person of my weight. I remained on this diet of morphine and Forti-Sips till the end of my radiotherapy. I attempted to eat my food, but the radiotherapy played havoc with my taste buds. Some foods did not taste anything like they suppose to taste, some had no taste at all, the texture of some foods was totally different, mashed potatoes for instance, I could detect every grain and particle of potato, and it was, like eating potato flavoured sawdust. Mind you, I did better during the radiotherapy than most. Some have lost the ability to produce saliva, I did not. Some had horrendous skin blisters which oozed and wept, I only had an area of about one inch square under my chin but that healed in three days. Some have skin turn really bright red, mine just tanned brown. I was told that, the process instituted by the radiotherapy would continue, even though the therapy itself has stopped, for 10 to 14 days, and also at some stage I will have to come off the morphine.

The Great Escape

By the last day of therapy, it was 17 days to my booked holiday in Majorca. In the state I was in, I wasn’t fit to leave the house but I was really looking forward to this holiday. I had already had to cancel my holiday in April and been stuck in the house for nearly four months getting better, getting worse, and better, and worse. Now that all the hospital visits were just about over, I wanted to go. The ‘trachy ‘ was now healed, the wound on the wrist likewise, and I could always cover it with a sweatband (so as not to offend the more squeamish of the human race). That still left me with the problems of morphine, food, mouth, and teeth care.

So I came up with a plan. I imposed a strict regime. First, I cut the strength of morphine by 25%. Second, I started for the first few days eating as much as possible of my food. Mouth, I left to its own devices as there was nothing much I could do about it, except rinsing constantly with saline solution and gargling with aspirin solution. Teeth, I brushed and cleaned up to four times a day, often with tears in my eyes. Gradually I ate more of my dinner but still taking 4 Forti-Sips per day. After 7 days I cut the morphine by a further 25% and started to have solid food for breakfast, supplementing my solid food with Forti-Sips. By now my throat was fine, the coating on the inside of my mouth was going away, only ulcers on my tongue remained. The skin under my chin was healed, but very soft. I continued rinsing my mouth and gargling with aspirin solution, cleaning my teeth after every meal and nighttime. Sometimes I must admit that it was a hurried process due to the pain. By the 12th day I stopped taking morphine completely and moved onto CoCodamols. I was in pain all the time, but it was pain I could tolerate, and only used 'CoCodamols' when it got bad. Trying to eat as much solid food as possible, and only taking Forti-Sips to replace a meal I did not eat. Same routine for the care of my teeth. At this point, I knew I could go on my holiday. I knew I had won.

I prepared my stores for my trip. I took enough morphine, full dosage, every 4 hours 182 ml in all, to last two weeks, 100 Co-Codamols, just in case the customs got my morphine, 28 Forti-Sips and total sun block. By Saturday the 1st of August everything was fine, except my tongue, the ulcers you know. The holiday was superb, good food, sunny and warm, sea to swim in, everything that goes with a good holiday. I used 12 CoCodamols, 10 Forti-Sips and used morphine twice, for the wrong reason I may add. Early on in the holiday, I could not sleep due to the heat and I remembered that in the past every time I took morphine, it made me drowsy – enough said, I used it to make me sleep. I stopped it right away, as I did not want to be dependant on morphine to sleep.

Trouble returns

Upon my return I went back to work, part time to start with, but within four weeks I built it up to full time. I did not take any medication at all, no longer take Forti-Sips. Cleaning of teeth, only rinse with saline solution in the evening, but I do rinse my mouth with clean water every hour. But by 17 th September, I was still getting ulcers in my mouth which made cleaning teeth hard. I still had to go to the hospital every month, to see Dr Coyle, Mr Foo, Mr Mason.

Then my right salivary gland which had got blocked off by the nature of the operation became swollen. So in February Mr Foo did a needle biopsy of the gland. The result was no cancer, but not enough evidence to confirm that for certain. You can imagine how I felt, for those two months. I was walking, working, living with a 50:50 chance, cancer or not. My thoughts were in turmoil. Should I believe that I have no cancer, or that I may have it? When Mr Foo said that it was best if we took it out, I was so relieved. I thought: local anaesthetic, six stitches, half an hour, over and done with. But Mr Foo said, there were to be no half measures – an all out block dissection on the right side. That was a shock, I just could not think. I said that I would need to think about it. Why? Don’t ask because I didn’t know why. At the following visit, Mr Mason asked me why I did not want to have it done. (By then, my mind was a bit clearer.) The answer was that after the first op and the radiotherapy I had believed it was all over, I had won. But now I was being asked to play again!

Back to BRI

So I went back into BRI in April 1999. It was Wednesday. It was like going home from home. Lots of familiar faces, lots of new faces, such a nice bunch of people. Questions like: What are you doing here? You again? Answers like: You did not do the job right in the first place so I came back to have it done again. Yes it’s me; the bad penny turns up again. Do you still serve that lovely hospital food? (Actually it was not that bad.)
Writing all these here, I sort of neglected to write about my mouth, but as you can see from above, it works. When I was undergoing radiotherapy for treatment and afterwards, I had some plastic bottles with saline solution given, so I kept two and constantly made my own saline solution to rinse my mouth. I found baby toothpaste, nice, brush my teeth as often as I can, at home after every meal, bit more difficult at work, bit I rinse with clean water.

The second op

Back to the op. It took about four to five hours. I was waking up by the time we got back to the ward (me and my chauffeur). Pain, did not know pain could be like that, pain and no easing, you would have thought it will come in sort of waves (it has done before) get strong, then ease off, and so on, but this time it continued to intensify.

Mavis, the nurse, injected something into my front right thigh, nothing. Further injection to my left thigh, nothing. Talking about crying, I have never wept so much in my life. I was squeezing my Susan’s hand to breaking point. Further injection into my bum, nothing. Orla came to see me, and in my pain-mind, I remembered Oramorph, morphine that helped me through the aftermath of radiotherapy. I asked her if she had some, and if I could take some. (Stupid asking a doctor in a hospital if they have a drug, I ask you, but in such a state you ask all sorts of silly questions). I duly received a dose of Oramorph. Pure magic, slowly drifted off to sleep, and out of this world of pain and misery.

Friday morning, 6:00am, bright eyes, wide-awake, hardly any pain at all, nice and quiet on the ward and I felt great. So I took my operating gown off, with some difficulty as I had two drains from the right side of my neck, put my PJ’s on and sat around waiting for the hospital world to wake up. Morning rounds and the doctor said that I could get out of bed. But how as at that moment my drains were tied to the bed. Therefore I was tied to the bed. I needed a carrier bag (Morrison’s, Asda’s, M & S’s, any shopping bag would do!) Anyway I spoke to one of the nurses and they gave me a small wash bag to carry my drains. So I got mobile again! And went to the bathroom for a right good wash, and cleaned my teeth, a right good brush with my baby tooth brush and baby toothpaste (with cartoon characters on it). And so passed the five days there: bathroom, meals, telly, videos, reading, and utter boredom!

Out again

When I got out at last I took a few weeks off work. I got back to my old routine with the care of my mouth, brushing as often as possible rinsing my mouth with salt water and Corsodyl. Same old routine you know, ulcers come and go, matter of hours, tongue will swell and go down, matter of hours, thrush will come and go, matter of hours, sometimes all three at once, food will not taste as it ought to, potatoes will not taste of potatoes and so on, but thankfully not right often, but when it does, I just force myself to eat. I have discovered that hot coffee with sugar makes the ulcers go away, cheese will bring thrush on, but cold beer will make it go away, so a ploughman’s lunch with beer makes for a good meal.

I have since had another holiday in 2000, back to Turkey. You can have Majorca. Holiday was great. Turkey, home from home. No medication this time whatsoever. I was a bit apprehensive about my appearance after the surgery, What with all the scars, all I would need was a couple of bolts, one on each side of my neck to complete the picture. But really, I don’t look so bad after all. I noticed some people looking, but I did not let that worry me, I was there to enjoy myself. Vanity you know, there is some in all of us, to a smaller or greater degree. Sometimes I look in the mirror and think, why me, why do I have to have all this scars? Dr Coyle was right when she said that my modelling days were over.

Millennium man

Initially, I made regular visits to the hospital every month for review and to also visit Dr Joshi at St Luke’s. He is the man who inspired this story and also made me some new tooth pegs for me. Bit of bad news: got made redundant after 35 years at the same company. However at my last visit to BRI in October 2000, there was good news: I now have to see Mr Foo only every three months. It means that I will see the new Millennium, with my ulcers, thrush, scars the lot.

AK