Alan's story

Message board member

A story for Ryan written by his daddy Alan

Alan sadly passed away on the night of 5 September 2004. He was a regular poster on the Mouth Cancer message board. His sister's and friends' final words can be found here

The Operation

August 23rd 2002

If you’ve ever been in a hospital waiting room the chances are that your appointment has, at one point or another, been delayed by anything from 10 minutes to even 2 hours! That day was no exception as I was sat waiting in the “Oral Maxillo Facial Department”. I had never heard of it before and only at a later date would I learn what it meant.

It had been just over two weeks since I went to see my G.P. with an annoying mouth ulcer. He first prescribed me a course of Amoxycillin for a week. When the medication had not had any effect, he then referred me to the Middlesbrough General, where I saw a postgraduate doctor. She tried her best to separate my tongue from my mouth; I had no idea that my tongue was so long! After speaking to some other medical professionals, she got me inspected by more doctors and then finally informed me that I was to have a biopsy.

“Sure, when would you like me to come back?”
“No, you’re going to have it now!”

At this point, let me tell you that the only other time that I’m aware of that I had been in hospital, was the day that I was born! I phoned my Mam to tell her that I could be some time as they wanted more tests.

I sat in a dentist’s chair to be informed of the procedure and to sign a consent form for the biopsy. I'd never had a minor operation before. After a quick incision it was all over, and my tongue felt it had outgrown my mouth! They would contact me.

I was telephoned while at work and told to come in to the hospital in a couple of days. So this brings me back to the waiting room.

“Alan Lawson”, it was my turn.

The consultation room was only small to say the least. Several other professionals and a nurse, who sat beside me, entered the room. There were 7 or 8 people with me in the room and was a bit crowded!

Professor Avery introduced himself and several others within the room. What he was about to tell me would totally change my life forever! But this man probably says this 2 or 3 times a day!

“Mr.Lawson, we’ve discovered a growth on your tongue that’s cancerous, you’ve got Oral cancer!”

Who was he talking to? It certainly can’t be me! At this point the nurse, who sat beside me, held my hand. I later found out that Jill Skelton was a Macmillan nurse, and was to become a great friend, not just my nurse. Nothing else seemed to register in the next 5 minutes; I was allocated another appointment and also an appointment for a C.T. scan.

On my way home, I had sent a text to Angela and my Mam. Being told you have cancer is not an experience many people have to go through. I had to tell my parents and that wasn’t easy.

The next day, I went shopping as if nothing was wrong. While out, I phoned Angela who had been my partner for 5 years before we had separated the year before; we had a son together. Trying to tell her was harder than I had thought. I’d kept her up to date so far but telling her I had cancer was hard!

“How?” was her reply as she knew full well that I didn’t smoke and certainly wasn’t a heavy drinker! As I explained more about what might or might not happen, I could hear her getting quieter and quieter, more through shock that someone like me had got cancer.

September 9th 2002

Having a C.T. scan can easily frighten many people and it’s easy to understand why. You lie on a bed which is slowly moved forward and you’re asked to practice holding your breath for a certain amount of time while trying not to move. You’re talked through what’s about to happen, and what to do if you have a panic attack. After this practice run you’re brought out, you’re given an injection of fluid that sends a warm sensation through your veins and then you’re moved back into the scanner. Communication is through a two-way system and they’re always talking to you. When the scanner is started up, it’s a high-pitched revving sound and it’s like you’re in another place, completely by yourself! After it’s over, there’s a sense of relief at getting out. It is easy to understand how the whole experience can be frightening to some people.

September 11th 2002

The events of today were not known to me as I had my own priorities and New York was a million miles away. The results of my scan were through and only confirmed what we already knew but they were necessary to back up what the specialists diagnosed. I was also told I was going to have an exploratory operation. This is basically a dry run to see what would happen if I went under anesthetic, and to check a few things in my mouth that would be easier than if I was conscious. It was to be scheduled for the 16th, the same date my sister was due in hospital to have her first child!

After dropping my sister off at the North Tees hospital, I drove home to catch the bus to Middlesbrough General. Despite living only 20 miles apart, we have different health authority trusts; in fact the hospitals are less than 4 miles apart from each other. My operation was for 12-noon and I arrived, just before 10am, only to find out that all operations had been delayed! This was to be my second minor operation since the biopsy; it’s called an exploratory operation but nothing is really done besides looking about and seeing how I’d cope under anesthetic. Jill Skelton gave me a comforting talk about the operation, followed by the anesthetist to sign consent forms.

After the operation, I came round quickly and phoned my parents to say I was okay and that I could go home. I also found out that my sister was okay and had just had a baby girl!

The following day I was back at work, which was the way it had been since I found out that I had developed cancer; I’d only told my boss and the store manager about my illness. Working in Debenhams with over a hundred other people working there, I couldn’t face the sympathy I’d be getting. People also tend to associate cancer with death being certain, and begin to treat you as though the inevitable is about to happen! I also needed to carry-on as normal for my own sanity as I didn’t want to be completely overcome by cancer. I’d even penciled in a date to return to work as I’d been told that recovery from the operation would take 12 weeks. And I had decided that, that would be when I would return to work! In the meantime, I visited my sister, Joy, in hospital so that I could see how she was and to see my newly born niece.

I was next in hospital on the 25th, mainly to see the radiographer to discuss the possibilities of radiotherapy, as a follow up treatment, after the operation. However, tests had revealed that it was almost certain that it wouldn’t be needed!

My operation was to be on the 27th, so I had to be in hospital the next day to give blood, take various tests and to be weighed. At that point I actually tipped the scales at 15 1/2 stone! I was up early that day, as I had to have everything ready before leaving and see my mother who wanted to visit me for support! On arrival to the ward, the first thing that hit me was how old all the patients were, however, most of them were for broken bones; only a few were oral surgery patients! I had my own room, which was more to do with avoiding infection and the amount of equipment that would be around me after my operation.

Various nurses and doctors visited me, all wanting to perform various activities, like taking my blood and measuring its pressure, etc. I have a natural heart rate of 38 bpm, which upset one student doctor who proceeded to bring in various syphigometers believing that they were all either broken or I was dead!

My last meal was teatime, although I did have coffee and biscuits for supper. I’m usually scared of things I don’t know and, that day, I was petrified. Although I knew exactly what was going to happen and why it was being done, I still felt unsure of what to really expect as I had never had a major operation before.

At night, I phoned my Mam, and then settled into bed, watched television and went to sleep. I’m an early riser and was up at six to get showered before my operation, as I was showing my body in theatre it might as well have been clean! A nurse came into my room and handed me a pair of tights!

“Put them on Alan.”
“Yeah, that’ll be right!”
“No, seriously put them on. They’re to prevent D.V.T”
“OK, then…”

Didn’t I look fetching? Wearing paper knickers, an operating robe and now a pair of tights! Any level of dignity I had left just flew out of the window!

Last minute checks were made as I got onto the operating table and Jill wished me good luck. I was on my way. Yet another check outside the theatre, as to what I was having done, made sure my B.P. was normal and my pulse was still there!

"Put this mask on Alan, it’ll help you breath!" It sure would and I would wake up later covered in bandages!

"Alan! Alan wake up, your operation is over!" I think I had been woken up Saturday, but my next bout of consciousness was Sunday, which was in fact my birthday. "Happy Birthday" was my most hated phrase of the day! Anyone wishing it was promptly told where to go!

During various states of consciousness, I can remember various things like how I sat upright and attempted to remove the bandages off my arm. When I was fully awake my nurse informed me that the staff had told her, that while she had been on her break, I’d been quiet determined in taking my bandages off and I had to be held down while they fastened them back on. Asked by the staff where I thought I was going, I’d told them that I was going to work. What stopped me? They told me that it was Saturday and I don’t work Saturdays!

While in ITU, what I found that was frightening was the chilling scream of a little girl that had been recently operated on, who was now awake and in total pain from the operation!

On Monday, I was moved into my ward and had my first visit from my Mam and various other medical staff. I don’t remember much of my Mam’s visit as I fell asleep while she was there! Tuesday was my first fully conscious day and I was able to notice various pipes and stuff coming off my body as well as a ventilator-like mask to help me breath.

My speech therapist visited me to see how things had gone. As well as teaching me how to talk again, Shannon helps her patients learn to swallow properly which, in turn, helps you learn to talk better!

Prof. Avery also visited every day along with just about everyone that worked in the hospital! No sooner had one person come and gone, then another rolled in; student doctors, nurses and postgraduate doctors. An NHS manager wanted to do a questionnaire on what I thought about the hospital! And I was offered meals everyday despite being fed through a tube up my nose!

I was advised that once I was able to swallow water without choking or it spilling back out, I would be fed the liquidized food, then allowed home. This was to be my way off getting out!

During a restless night, I pulled out a tube from my body that acted as a drain. Great, I was almost unchained! During the night, I couldn’t sleep because of the noise on the ward. So while I was awake, I practiced drinking; after nearly choking on the fist few mouthfuls, I got round to being able to swallow small amounts of water. The next bit was being able to close my mouth so that the water didn’t flow back out. This was harder than it seems!

Part of the operation was to slice open my face and my neck to gain full access to my tongue. The pipe work under my neck required making a cut from my lip, down my neck and up to my ear in a swooping incision to pull my face open. So now my lips were stitched back together and my skin was stapled all down my neck! So closing my lips for a tight seal would certainly take practice. I managed to drink some fluid after a certain amount of practice but not too much, as it would induce choking. And choking would be of no help as it’s considered close to drowning - filling the lungs with water!

As for feeding, that was done through a tube that had been inserted in my nose. I didn’t like that at first so I removed it during a half conscious state, only to hack it back up with a feeling of being sick. So the next time it had to be done while I was awake, which was not fun. The tube is about 18-24 inches long though it only feels about 10 inches long. Still, it took some persuasion for me to ‘inhale’ it in! Having food pumped into you soon became tedious so I tried everything to lessen the time span. I started off early as possible and then turn it off while I went for a shower or switched it off while no one was looking. And in case they figured out that the food wasn’t being consumed, I’d tip some into a bowl and pour it down the sink!

It was coming up to a week after the operation and I felt as though I’d been there for an eternity. I felt as though I was climbing the walls! As I was making progress, I was told that I might be able to leave after the weekend.

Swallowing became an art form of tilting my head back and letting the fluid flow down my throat. Only one drawback after showing the doctor how I drank water, I had a visit from Shannon! To say she was not impressed was an understatement! I had to adjust my style of drinking and she was now visiting everyday to make sure I was drinking properly. Bugger!

I soon readjusted and was able to sip large amounts of water without any problems and demonstrated this to the Professor, who said I should try soup and pured food. He also took out my nasal tube, which was great! My first meal took about 30 minutes to swallow down. I didn’t care; I was getting out the next day! My sister and brother-in-law visited that night for the first time; Joy doesn’t like tubes and pumps as it makes her upset. Anyway, I arranged transport home.

Getting home was a major accomplishment. But even all that experience could not prepare me for what lay ahead!

Post-Op

After being released on the 8th of October, I was back in hospital two days later to remove the bandages on my arm. My left arm had been the donor site for the ‘flap’ that was used to replace the cancerous site in mouth. It involved removing an area of three square inches of skin and several arteries to replace those that were removed in my neck. A skin graft was also taken from the inside of my forearm to cover the donor site.

I was back in the same room where I’d had my biopsy months earlier. Jill was going to replace my bandages. I’d previously tried to take the bandages off just after coming out of the operation so Jill had to take, what were in effect, two sets off.

As Jill began to unravel the bandages, I could feel myself getting hot and dizzy. When I saw my arm without the bandages on that was when I blacked out. I’d just fainted! Jill said I’d fainted from the shock of seeing the dried blood and mess that had been concealed. I was laid up in bed and given plenty of fluids.

At home I was still eating soft foods; mash, soup, gravy, ice cream or custard. I did this alone as I was too embarrassed to eat in front of my parents. My eating was slow and I compared myself to a baby feeding, ending up with more on top and escaping through the sides of my mouth. Still it was better than having that gunk pumped through my nose!

I was still having community nurses visit me on a daily basis to change the bandages and check on the healing process.

I had arranged to meet Angela and Ryan at the Metro Centre so that I could spend the afternoon with Ryan. Whilst travelling with my sister and niece to meet Ryan, I noticed my shirt was all wet and sticky; I thought I was sweating a bit much for an air-conditioned environment. Dashing in to the lavatory I pulled my top off to find that one of the scars on my neck had popped open and was weeping. It wouldn’t be till much later that I would find out how significant this moment would be!


My sister phoned Angela and explained what was happening. Meantime I had asked for a first aider to help. When she arrived she almost collapsed in shock. An ambulance was called and the three of us were whisked off to Newcastle Infirmary. Although the consultant wasn’t worried, he said I’d be better off being seen by my own Max-Fax team. Back at the Metro Centre we finally linked up with Angela for a brief conversation and apologies.

At Middlesbrough General, Professor Avery checked it out and said it was ‘Synovial Fluid’. He got the nurse to put on a fresh dressing before sending me home. If I knew that was all that would be done, I could have stayed at the Metro Centre.

The weeping wound was the main reason for the continuing visits of the community nurses, to check on the healing. Most of the time I was able to change the bandage myself whenever it became too heavily soiled. This got us on to the subject of me becoming a nurse, in jest.

My speech was improving all the time, mainly thanks to Shannon who kept me on a thorough routine of exercises and continual assessment. My eating was also getting better; I was able to progress at a rapid rate and start eating more solid food.

The scars on my arm and chest could easily be covered. The one on my neck was not so easily hidden. The scar went from my lips, under my chin and upwards behind my ear in a sweeping movement.

The other scar that was not visible was the mental scar. The continous staring from strangers and the constant visits from nurses was, in a way, reminding me of my time in hospital. It was late November and I hadn’t been to work in almost eight weeks. I wasn’t sleeping properly, possibly through anxiety. My doctor prescribed sleepers, which were great but I’d wake up at two in the morning. So we upped the dosage and saw some improvement.

The number of times I held a bottle of tablets and seriously considered taking the whole bottle was unbelievable! But a photo of Ryan looking at me prevented me from doing so, how could I rob Ryan of a father? He had done nothing wrong.

I was only 34 and I’d had oral cancer! Oral cancer is mainly associated with heavy smokers/drinkers and also people who were much older than me.

I had arranged with Angela for Ryan to stay for a visit. I’d been in hospital when he’d had his 4th birthday and had not had him visit till just before I was in hospital. He knew his Dad had a poorly arm and neck. He was more curious than frightened.

When the nurses visited, Ryan helped out. He knew every dressing and bandage used and in what order to apply them. To him my arm was sore and my neck poorly. How simple could it be? If only it was.

Ryan had been involved in a lot of visits to see my specialists, which on many occasions had broken up the seriousness of the visit. During one visit to Shannon, my voice was taped as a reference point. After reading a paragraph, Ryan who had been stuffing his face with juice and biscuits suddenly burped! Playing the tape back put us all in hysterics!

One of my biggest breakthroughs was to eat out in public again. I didn’t really have much choice in the matter. On taking Ryan back, I met Angela at the Metro Centre and she dragged me into a restaurant. I’d been self conscious of eating in public as I ate slow and deliberate so as not to have any problems. Although Angela had said no one was watching, I could feel as though they were and could only eat half my meal. Still, it was a start.

December brought another specialist, a physiotherapist who was a similar age to myself. The treatment helped regain movement in my arm that had been lost following surgery and also improved my stature.

New Year saw a new medication. I’d been feeling down for some time now and was doing a poor job hiding it! Angela said she’d noticed it for sometime and tried telling me several times but I’d never taken the hint. A lot of people take ‘Prozac’ because they feel depressed, whether they’re unhappy about jobs or relationships. I didn’t want to be seen as jumping on the bandwagon; I wouldn’t say I was pushed onto them, merely advised by three medical professionals.

My visits to Shannon & my physio continued and progress was made; well enough for Shannon to almost end my treatment.

During a check-up at the max-fax clinic, it was mentioned that I had a legion on my tongue, perhaps from being bitten but nothing to worry about.

I’d started making plans to go to college in preparation to go to university so that I could study to be a nurse. Nothing was going to stop me, or so I thought.

It was now near the end of February and I was back at the clinic for another check-up.

“Can we have you back in for another biopsy Alan?” said the SHO

Sure nothing to worry about, just a precautionary to remove a doubt they had. The biopsy was more like an operation this time; gown, paper knickers and into theatre.
Before my biopsy Jill came to see me. We spent half an hour laughing and joking, which helped ease the tension somewhat. Mark the SHO said “There’s nothing to worry about, just routine.”

Before giving me an injection that would freeze any sensation in my mouth Mark said, “This stuff tastes foul!” Foul isn’t the word I’d use to describe it! If it weren’t for a quick thinking nurse who produced a sick bowl from no-where, I would have spat it across the theatre floor.

March 11th, two weeks later, I was back at the clinic. Professor Avery was running late, almost 2 hours behind. As I walked in, there was a lot of familiar faces kicking their heels. Still I thought nothing of it. Prof. Avery got straight to the point

“I’m afraid you’ve got cancer again!” He continued to talk about it as I laughed nervously; it couldn’t be true. “I’ve plans you can’t do this to me!”, I thought.

The cancer had been so aggressive, that it had travelled further than anticipated in the initial diagnosis and, unfortunately, the original surgery had only removed the underestimated infected region.

The announcement had hit me harder the second time. As I left, Jill had asked me if I was alright. I answered I was OK but then burst into tears. Jill ushered me into a side room and convinced me that there was no harm in crying. She explained various routines that I might have to go through and why the cancer was still there.

Two days later, I was at college for my interview. I had to tell them that I was due for another operation and the interviewer suggested that I should do the course part time, in case treatment was needed. College was to start in September and I WAS going to be there!

The following day was another CT Scan. In an attempt to hide the scars on my neck, I’d grown a beard but it just seemed to highlight them. The bonus was that once I’d put a hat and sunglasses on, no-one could recognise me!

I met the consultant surgeon Mr Edge the following week. He had been part of the original team; Prof. Avery had called him in for a second opinion. Mr Edge had confirmed what we already knew and checked the scan results. He also said that the scar that had popped open might have been a significant indicator that cancer had returned!

I was due in hospital on Friday 28th March but Prof. Avery said I could return on the 30th, which would allow me to have Ryan visit the week before. However, I still went in on the Friday to get as much, as possible, done in preparation for the operation.

The cancer had been more aggressive than had been thought and had entered the lower jawbone. So although the operations had similarities, the main differences would be to remove the jawbone and replace it with a section from my forearm. With the removal of the best part of my jawbone, I would also lose a fair few teeth; this would impair my eating and speech further.

A week or so after my operation I had a visit from Prof. Avery and the look on his face was serious! A sample had been taken from part of my jawbone that had not been removed, this was sent to make sure all was well. Clearly, it wasn’t!

“Alan, tests from the pathologists have come back, and I’m afraid it’s positive. You still have cancer!”

With a sense of uneasiness the Professor switched to questions about my immune system and why I was so susceptible.

“Have you ever been in contact with someone who is HIV positive, or do you have it?”

Not only had the Professor have to tell me I had cancer three times, but also the unenviable task of enquiring about whether I was HIV positive as well. I certainly wouldn’t want to be in his shoes.

It would take a further eight weeks to have the results checked out. In the meantime I had the cast on my arm replaced four times and I hadn’t left the hospital yet!

Eating was also more difficult, so it was arranged to have a PEG fitted so that I could have that delicious gunk Jevity pumped directly into my stomach!

When the results finally came back from the pathologist’s, it was good news. On the original test, they had accidentally tested on the jawbone that had been removed and already known to be cancerous. They had actually made a mistake!

It hadn’t really sunk in that I had had cancer for the third time, so I can’t really say if I was relieved to find out that I didn’t actually have it again. But now I had to start living my life again! My next goal was college and that was in September!

The main reason that I wrote about my experiences was so that when my son Ryan grows up, he can better understand what happened to his Daddy. It was also written so in case I wasn’t around when he grew up, it would help Angela explain what had happened to me and why Ryan no longer had a Daddy. I’ve always used the title ‘A story for Ryan’ in typing up my experiences and would like it to be continually known as that.

Regards

Alan