GH's story

SORE GUMS

I’m a little vague as to how it all began. I remember having some minor trouble inside my mouth with what I thought was an ulcer. Pastilles, bonjela and a mouthwash were tried – all with little effect.

I have been a heavy pipe smoker for over 35 years and have always enjoyed a drink, changing from beer to spirits in recent years. As time went by my lower right gum became sorer, but I continued drinking and smoking. The only concession being I took water with the whisky. At this point I should say I only have eight front bottom teeth of my own and a top set of dentures, so the ulcerated gum on the bottom right was very exposed when chewing. Crisps and cornflakes were quickly eliminated from my diet and increasingly I took to soft foods such as Weetabix, yoghurts and soups. July 1999 stands out in my memory as I went to a funeral and had real difficulty eating the sandwiches. I had to chew more and more on the left side, trying to avoid aggravating the sensitive right. Still I didn’t visit my GP!

BACKACHE

Shortly after the funeral I felt twinges in my back and over the next few weeks the backache gradually worsened, pushing my mouth trouble into a distant second place. The backache didn’t go away and the condition deteriorated, but stupidly I took no action. It wasn’t until February 2001 that I finally sent for the doctor. My GP, Dr Gopal, gave my back a thorough investigation. I’d explained I was having spasms and had been sleeping on the settee because I had difficulty getting in and out of bed and had given up driving my car. He sent me for x-rays at the Health Centre. By this time I was walking with a distinct stoop and had trouble raising my head. Dr Gopal suspected I had osteoporosis. This proved to be the case.

The ‘ulcers’ were spreading, but it wasn’t until late April 2001, after more home visits about my back, that I mentioned the condition of my gums. Dr Gopal was immediately suspicious of mouth cancer and arranged for me to see Mr Worrall at Airedale Hospital.

CANCER

After a biopsy he confirmed it was cancer. He said the condition was operable but wouldn’t give the odds of success. Knew I should have taken action much earlier, but thankfully Mr Worrall wasn’t over critical.

I must have been pretty bad, as action was taken straightaway. The results from an MRI scan were disappointing because they couldn’t get me flat enough on the scanner bed. However, the following week, a CT Scan for some reason, was successful. Events were quickly unfolding. Dr Coyle examined me on 13th June at the Bradford Royal Infirmary, and Mr Worrall on the 27th. Then I attended a pre-operation meeting on the 4th July taken by Dr Olivari, one of Mr Foo’s team. She drew a diagram showing the tumours and how they could have spread down into my throat. The procedure was described fully and she explained how the skin from the inside of my left wrist was to be used in my mouth after the tumours had been removed. She was very re-assuring and talked at a level I could understand. The following week I was admitted to Ward 19 at the B.R.I.

BRADFORD ROYAL INFIRMARY – SURGERY AND AFTER

Preparation

Wednesday 11th July was the start of a long stay in the B.R.I. I was placed in an en-suite single room and soon settled in. However, the afternoon didn’t go according to plan. A nurse came to fit me with a feeding tube. It was an uncomfortable experience having the tube pushed up my nose and down the throat into the stomach. Drinking water and swallowing hard helped the tube pass down. Once in position there was no discomfort, but it slipped out twice. The third time of trying also went wrong because this time it passed into the lung as the x-ray showed. A doctor successfully managed to put it up and down into the right area and the supporting wire from inside the tube was removed.

The whole process had taken up about two hours. Not the best of starts, but it improved from then on. Mr Worrall’s handymen later visited me, separately. They both explained again what was going to happen the next day and were supportive. Then Dr Thornton came and asked for my written permission for him to film the operation. Another visitor was the anaesthetist, Dr Bembridge. He told me I would be receiving pre-operation relaxing pills. I was transferred to the High Dependency Room.

I slept well and was woken by Micki, my night nurse, at five o’clock. She brought me a cup of tea and measured me for long white surgical stockings and supplied me with knickers and a gown to change into. I was told to have a shower, shave and go to the toilet before six o’clock and I wouldn’t be having anything else to eat or drink. Two more relaxants were given to me at seven and I was sent to bed. That is all I remember about Thursday 12 July 2001.

Out of the fog

It was sometime on Friday when I started to come round. I noticed I had a pot over my left forearm and various tubes were fixed to my body. A tracheaotomy had been performed to enable me to breathe and the tube was still in place. At first talking was very difficult but I had a note pad and pen so I could communicate with the nurses. Looking at it now, my writing was all over the place and difficult to decipher but at the time I thought I was writing well and making sense. I had been linked to a morphine bottle, which supplied a limited amount over a given period, so I couldn’t overdose.

Full use of it was made explaining to some extent the wobbly writing and confused thoughts. All the nurses were patient with me in our question and answer sessions. By Sunday I was beginning to come out of the fog and remember asking where my dentures had gone – no one knew, but it didn’t matter really, as I wasn’t being fed through the mouth. Bed baths, bed pans and urine bottles were becoming routine as was the use of a suction pump to clear my throat and chest and sick bowls were provided for me to cough up thick phlegm.

Getting better

Over the next week I gradually improved and was able to get to the commode and potter about. Sitting in the bedside chair made a pleasant change from being stuck in bed. The trachea peg was removed and I could make a few sounds by pressing down with my fingers on that area and trying to talk. I could just about be understood, but this was tiring. I still wrote most things down. The note pad was becoming a cross between question and answer and a diary. Eventually it turned completely into a diary. Without it I couldn’t have written this detailed rubbish.

On Thursday 19th July I was moved out of the High Dependency Room and back to my original one. The morphine had stopped and soluble paracetamol, fed through my tube, replaced it. Friday saw some stitches removed from my jaw and neck and a ‘floppy’ diet was introduced. I made a feeble attempt at Leek soup followed by custard. Although the backache remained, no longer was I suffering the gripping spasms. None of the medical staff could explain this mystery.

Losing weight

The 'floppy' diet was only a partial success because I started to lose further weight – from 10 1/2 stones at the beginning to fewer than 9 stones at my lowest. Food through the tube was brought back to compliment the other diet. The dietician had a busy time trying to find the right balance. Too much food and I was sick – too little and lost weight. In fact in the following fortnight I vomited six times, bringing the feeder tube up on three of the occasions, but on the whole, I was making steady, if slow progress, and enjoyed walking up and down the ward corridor.

Preparation for Radiotherapy

After four completed weeks at the B.R.I. Mr Foo arranged for me to see Dr Coyle down in the E.N.T. Department to talk about Chemotherapy, Radiotherapy or neither. She advised a course of Radiotherapy, which would take place at Cookridge. The process was explained in detail as well as the downsides of the treatment, such as hair loss, blotchy skin like sunburn, smooth skin in some parts, sore and sensitive mouth, and food tasting differently. The following week, Wednesday 15th August, I was taken I a taxi ambulance for a preliminary visit to Cookridge and the ‘Mould’ Department in particular.

I had to get into a near impossible flat out position on a hard table. Then a plaster of Paris mould was built up over my face. Wendy, my escort nurse, later explained how they put layers of ‘quick setting stuff’ on me. When set, it was peeled off and was to be used to make my personal plastic mask. It had been quick and efficient. Once the remains of plaster on my face had been washed off we reported back t the Reception area. All this had taken place before ten o’clock, but then we had to wait for over an hour for the ambulance to arrive to take us back.

The second visit to Cookridge, this time to the Planning Centre, took place two days later. The mask had been made, but it needed slightly adjusting before the technicians were satisfied with the fit. It felt warm and tight and again it was hard work for my back on the table. I was then sent back to the waiting room before going for X-rays or photographs – I can’t remember which. Next I was seen by Dr Coyle, who explained the next steps and future treatment. As previously, she was very open, admitting it was not going to be ‘a bed of roses’. Dates for further visits were arranged and she said the Radiotherapy treatment would probably begin on Thursday 6th September. Whether I was to be an in or outpatient would be decided later.

21st August, I found my teeth wrapped in paper at the back of my cupboard. The trouble was they no longer fit. My top gums must have altered considerably, and coincidentally a consultant looked at my own eight teeth saying they didn’t need extracting – at least not immediately. I was then sent down for an unexpected x-ray of the jaw.

Wednesday 22nd August – 6 weeks now completed in the B.R.I. I did a few ‘toddles’ up and down the corridor before being given paracetamol and an anti-sick injection before setting off for another Cookridge visit. In the Simulation Room I was photographed from various angles, whilst on the table, and in the mask. Notes, exact measurements and degrees were written and little marks were made on the mask. I was told this information was vital to the success of the future radiotherapy. The radiologists had to know precisely where to aim the x-rays or more damage than good would be done.

Dental Check-up

Tuesday 28th August - was taken to St Lukes for the consultant, Mr Joshi, to examine the state of my teeth. He gave me a ‘serious lecture’ on the dangers of not looking after my teeth and gums properly and emphasised the teeth could become loose and fall out when the radiotherapy started. My teeth were thoroughly cleaned by Mr Joshi and I had to watch him, by means of a hand mirror, throughout the experience. He said it didn’t matter if the gums bled! After that he introduced me to a former mouth cancer sufferer who had received Radiotherapy over a year ago. He described what it was like, how he had coped and told me to have a positive attitude. Finally Mr Joshi provided me with literature, two tooth brushes, mouthwash and some gel to brush onto my teeth at night. He made sure that I understood cleaning four times daily, four minutes each time, was essential.

After a bath by Vicky she persuaded me to let her rid me of my ‘Bobby Charlton’ hairstyle. Visitors were generally in favour of the result after their initial shock. Mr Foo suggested that I should have a feed tube inserted directly into my stomach. He was concerned that I would vomit up the nose feeder tube when radiotherapy commenced and it would be difficult and painful to replace, because of the soreness and swelling in my mouth and throat.

The PEG

Dr Yeoman came on Thursday to explain the forty minute Gastrostomy tube and peg operation in more detail which was to be performed on the following Monday. A small camera was to be put down into my stomach for them to locate the best point to insert the tube. I would be sedated but conscious. Pauline did a good job of tidying up what was left of my hair after Vicky’s ‘attack’.

The final planning visit to Cookridge took place on Friday. I was on the table for longer than expected as further measurements and adjustments were made to my mask. Back at the B.R.I. Dr Reynolds, who was to perform the Gastrostomy operation came to see me and gave encouragement and reassurance. He said he had only about 5% failure rate when a tube couldn’t be inserted.

No food or drink was the order of the day for Monday 3rd September. I was given he usual gown to wear and a feeder needle and cap was put in my wrist so I could be injected and sedated. Dr Reynolds said later, after the operation, that I’d been conscious throughout but the drug had the effect of making me forget. From my point of view it had been a successful and painless operation. Back in my room I felt sore around the stomach area and generally weak. I was put on a saline drip to keep me hydrated and had to have no food or drink for 12 hours. Tricia, from Dr Reynolds’s department, came the next day to show me how to keep the point of entry clean and told me the tube had to be flushed before and after use and rotated daily. It had been decided that I would be going to Cookridge on the Thursday as an inpatient. In many ways I was sorry to be leaving Ward 19 and its friendly staff. I had nearly become a fixture – 8 weeks and 1 day stay.

COOKRIDGE AND RADIOTHERAPY

The nurses gave me a good send off. It was a sad farewell and I almost cried. Rutherford Ward, one of four, awaited me at Cookridge. Again I was given one of four singe rooms. An open ward just outside my room had four beds and another section round the corner had eight more. The women’s section was separate down another corridor. The ward sister welcomed me and explained what would happen over he next month. I was to stay in Cookridge for the full twenty sessions of radiotherapy.

Before tea, on that first day, I was taken down for my first session. Two young female radiologists managed to manoeuvre me into the required position on the treatment table and two supports were placed beneath my neck and thighs to make my back more comfortable. My translucent plastic mask was carefully screwed on and tightened. I’m not exactly sure how it was secured but they said it was vital that my head didn’t move. The massive machine hovered impressively over me. Only when they were both satisfied that it had been accurately set up, and this involved many slight adjustments, did they begin the actual beaming of the powerful rays. The whole process only took about twenty minutes and I was returned to the ward in time for tea – a painless introduction to radiotherapy. My first impressions of Cookridge were good. I had already settled into my second ‘hotel’.

The nurse preferred the pump to run at a lower rate compared with B.R.I., so my Gastrostomy feed lasted eight hours overnight. On Friday the Radiotherapy took place immediately after breakfast. This was followed by a visit to the Simulator Room for more picture of me in the mask on another hard table. This took about an hour in all, then the rest of the day was free. I had been told to keep my jaw area and neck well creamed with E45 four times a day.

As there was no treatment at the weekends some patients spent the break at home. Time passed quite pleasantly over the next fortnight. I had been eating well besides the pump feed and had gained weight. A routine developed. Early morning Radiotherapy was followed by free time, spent reading, walking, resting on the bed, sitting in the lovely gardens or watching television. We watched the Twin Towers disaster as it happened on Tuesday the 11th September. By then I had been transferred to the open ward. My appetite remained but there was a gradual swelling inside and outside of my mouth. Some of the food started tasting differently. The mask had to be adjusted because of my changing shape.

The last fortnight of treatment was not as pleasant but it wasn’t, all, bad. Helen and Mir, two nurses from my stay in B.R.I. paid me a social visit in their own free time. I was touched by this kind gesture. However, from the twelfth session, considerable changes began to occur. The inside of my mouth was becoming very sore, swallowing more difficult, and more of the food wasn’t tasting right, but at that point I still felt better than I previously thought I would. My weight even went up to 62kg about 9st 11lbs.

As the treatment progressed more sores sprang up around the lips, gums and tongue. Weetabix and ice cream and certain soups could be tolerated, but other meals were becoming a struggle. More food was being left each day and choosing something suitable from the menu was near impossible. Even drinking tea wasn’t easy. Towards the end of the twenty sessions I became lethargic and couldn’t be bothered to keep my diary. Probably the increased dosage of painkillers had something to do with it. The input through my stomach peg was doubled to maintain my ‘strength’.

A Macmillan social worker visited to help arrange the next stage – life after Cookridge. At this point I didn’t feel as if I would be able to cope on my own at home, so she sent off for various brochures of Nursing Homes in my area. My radiotherapy treatment was completed on Wednesday 6th October but there was a delay in my departure from Cookridge, because my foot and ankle became very swollen and painful to put any weight on it. A feeder needle was inserted in my wrist for a week’s course of antibiotics t fight the infection, which proved successful.

CURRERGATE NURSING HOME AND BACK HOME

My transfer to Currergate, the chosen Nursing Home, was re-arranged to Monday 15.10.01. I was to have a fortnight’s recuperation there. Loaded with boxes full of bottled food, feeding pump and tubes, medication and my own luggage a car ambulance delivered me to my third home. A comfortable single room with ensuite facilities awaited me. I was made to feel welcome and soon noticed the staff had more time to chat to the ‘guests’.

Progress was slow. Lips and gums were still sore and occasionally bled, but I was introduced to liquidised meals and this helped me cope with a wider range of food. Jacqui Whiteley, the Dietician from Airedale Hospital, reduced my intake through the peg from 1500ml to 800ml and this helped me appreciate my meals more, although some food and drinks couldn’t be managed or tasted oddly. My stay was extended for a further fortnight to enable me to make more steady progress.

Shirley, a friend, brought me home on Monday 12.11.01, after nearly eighteen weeks away. The effects of the radiotherapy were slowly receding and I was much stronger for the stay. It was quite a shock to the system having to look after myself. I had become accustomed to everything being provided and done for me. My friends and neighbours volunteered to help in any way they could. Although I’d had wonderful treatment, care and attention in the B.R.I., Cookridge and Currergate, it was still good to be back home.

HYPERBARIC OXYGEN TREATMENT (HULL BUPA HOSPITAL)

On a visit to Mr Joshi at St Luke’s Maxillofacial Unit later in November he noticed, when examining the state of my teeth, that part of my jawbone was protruding through the gum. He referred me to Mr Worrall, who confirmed it was a piece of dead bone and would have to be removed. However, he was concerned that my gum, damaged by radiotherapy, wouldn’t have the capacity to heal without some assistance, so before the operation he would arrange a course of treatment in the Hyperbaric Unit at the BUPA Hospital, Hull – the nearest one available. I don’t pretend to know how it worked, but roughly this treatment, which involved breathing pure oxygen in a pressurised chamber, was to re-vitalise my blood cells, so assisting the natural healing process post operation.

My G.P. Dr Gopal, organised the transport for the forthcoming daily trips. Mr Star, a consultant at the Hull hospital arranged a preliminary visit in January 2002, so he could assess the condition of my mouth and see how many sessions would be required. It was decided a 30-weekday course would be necessary. He showed me the chamber and a light transparent plastic hood I would have to wear and explained the full procedure.

The Chamber

The cylindrical metal chamber had a heavy door at least 3” thick, which when secured was obviously airtight. Inside there was enough space for the attendant nurse to bring in another chair if she wished to sit down. At the far end was a separate smaller compartment with a single bed.

The daily trips began in February – each session inside the chamber lasting from 1 o’clock to 3 o’clock. Two ladies and two other men started the course on the same day. The chamber was used twice daily but it wasn’t beneficial for a patient to undergo two sessions in one day. I asked this because I thought it would have halved the travelling.

Before each session we were told to remove watches and lighters and put them in our lockers outside the chamber. Then we were offered a glass of water to help us with popping ears when the ‘descent’ began. Obviously we didn’t move, but the nurse, who operated the change of pressure from outside, always communicated to us that we were beginning to go down. Besides sound contact, two small cameras monitored us and there were thick portholes as well.

The first twenty minutes were spent descending and whilst this was happening the nurse came round to clip our plastic hoods onto rubber rings which had already been stretched over our hands and fit like tight ruffs round our necks. Then two flexible pipes were attached to the ring from points on the chamber wall. One was to pump in pure oxygen and the other, I presume, was an air outlet, so the hood didn’t explode! There was a noticeable rise in temperature the ‘deeper’ we went. For the next forty minutes we talked, dozed or read. The nurse regularly checked that no oxygen was leaking from our hoods. Just on one occasion was there a dangerous build up of oxygen in the chamber, causing us to re-surface immediately and abort the session. The only other time we had to come up early was when a smoke inhalation casualty was rushed to the chamber for emergency treatment. The other twenty-eight sessions were successful and incident free.

A five minute break was given at half time, when the oxygen was temporarily switched off and the hood removed, giving me a chance to blow my nose, have another drink of water or deal with any facial itches. In the final twenty minutes, when it was time to surface the nurse also had to put on a ring and hood to prevent her getting the ‘bends’. Incidentally on odd occasions the spare compartment was used by deep-sea divers to aid their recovery. The chamber cooled considerably as we surfaced and ears sometimes popped, that being the only discomfort of the whole process.

Over the six weeks a good relationship had developed within the group and staff. Overall it had been an interesting and pleasant experience – the only drawback being the daily 160 miles round trip. Before this little adventure I didn’t know hyperbaric treatment existed. I believe much more research is being done to develop and extend its uses. In the final week, I was told my bone extraction operation would be performed the following Monday at the B.R.I. and I had to check into Ward 19 on Sunday 24th March.

BRADFORD ROYAL INFIRMARY – THE SECOND OPERATION

“Welcome back Gummy George”

That was the greeting sign on my bedhead as I was shown to my new quarters – this time a double room. Most of the nurses from my previous stay were there so I soon settled in.

Monday started quietly with no food or drink being taken. This time I wasn’t sedated before going down to the theatre. On arrival at 10.30am the anaesthetist squirted something up one nostril before inserting a tube to assist my breathing – no trachea opening this time. Then I was gradually sedated through the ‘flo’ on my wrist. Pauline, one of the many caring nurses held my hand from the start until I drifted away.

The next thing I remember was being outside the operating room on a trolley, in a line with five other patients – all at various stages of regaining consciousness. Soon I was wheeled back to my room, before 1 o’clock, feeling very little pain, just groggy. Later in the afternoon I started to notice my swollen and split bottom lip and a very sore mouth. My peg feed was started and I was told not to eat or drink anything for the next few days. Apart from the discomfort of the mouth I felt pretty good and slept well overnight.

Mr Worrall came to inspect me on the Wednesday. He was pleased with his handiwork and my recovery, but said my jaw would swing more to the right, because the bone was no longer there to support and keep it in place. One of the nurses rang the Hull hospital to arrange for a final ten hyperbaric sessions. After a week’s stay in the B.R.I. friends came to take me home and again I was given plenty of ‘medical goodies’.

That final phase of treatment began immediately, on the following Tuesday, after the Easter break. By mid April 2002 I, at last, had some time to myself. I continued to grow in strength but not in height. In fact in the three years I lost about five inches because of the collapsed spine caused by the osteoporosis, but even that condition had greatly improved. Although slightly bent, I wasn’t stooping as before and the gripping spasms had stopped but I don’t know why.

Follow-ups

Regular monthly visits to the Maxillofacial Unit at St Luke’s to see Mr Worrall and Mr Joshi began. Mr Worrall examines my mouth and throat area for any signs of the cancer returning, whereas Mr Joshi has now the added task of trying to solve my chewing problem. Because my jaw has moved sideways, my teeth didn’t meet the already altered top dentures. He has built up part of the roof so some contact is again made when I try to chew. With or without the dentures I can only cope with soft foods and at the moment I feel more comfortable without them. The ‘peg’ feed is still used on a daily basis to supplement my diet and is a happy compromise. In time, with more perseverance on my part, perhaps the teeth will do the whole job and the stomach tube can be removed. However, compared with the cancer and the osteoporosis the ‘chewing problem’ is only a minor irritant.

I’m thankful for the care and attention I have received from all the staff in the B.R.I., Cookridge and St Luke’s.

If you have managed to plough through ‘this lot’ then I think you will put up a good fight against any future health setback.

Best of luck! Keep your spirits up!
GH (63 years old at May 2003 – retired!)

P.s. I'm now seeing the consultants on a two-monthly basis.