Oral Cancer

An account of my experience of cancer of the tongue and its cure

A beginning

In September 2017 I woke up one morning to find the right hand side of my tongue had exploded. There was a deep angry looking crater on the side of my tongue. It was so painful I could barely talk and eating anything solid was almost impossible.

I went to work.

Luckily the job I had (welding and fabrication) did not involve conversation, except very occasionally when I needed instructions. Not a problem as I am pretty introvert anyway but paper and pen was adequate when needing to communicate.

I was due to see my dentist on the Friday, but she was away on holiday so I asked to see another dentist in the same practice _ urgently. The receptionist choked a bit on that but the dentist was willing and I presented myself to him. He looked and there was an “Uh oh!” moment. The sort of moment you get when the pilot of a plane sees a wing fall off. He asked if he could take photos. I indicated yes. He said that he would refer me immediately to the local hospital and made a phone call but no-one was there who could deal with me at that time.

It was some 19 days later when a biopsy was taken to confirm what was already obvious. That was not fun. In order to remove a decent specimen, the doctor had to freeze the area. To do that he had to insert the needle into the canker. It hurt a lot. I could hear the crunch as the pliers bit through the tongue. Bum clench. Then he stitched me up. He was really quite concerned to have to cause so much pain. The first in a long line of caring and decent hospital staff.

At that point a Macmillan nurse came in and we went off to speak to a maxillo facial consultant that happened to be holding a clinic on that day.

The diagnosis was confirmed a week later as squamous cancer.

By this time the affected area had doubled in size and such pain medication as I could access wasn’t working.

tongue cancer

I told our daughter and elder grandson who was just coming up for his 16th birthday. They took it very well. I told the younger one (6 just coming up for 7) that I wasn’t very well and had to go into hospital for a wee while.

I continued to go to work. It’s what chaps do.

Some Time Previously...

At this point maybe I should put in a bit of background.

Some 5 years before, the dentist had noticed a white area on the right hand edge of my tongue.
She sent me off for a biopsy. The diagnosis was a pre-cancerous lesion.
Soon afterwards I returned to the hospital and after a shot of local anesthetic, it was burned away with a laser. It smelled like burning leather. When the local wore off the pain was considerable. I had not been warned and was given no pain medication.
I decided I wasn’t going through that again and google reckoned that the risks weren’t great of it turning into a cancer.
So much for Dr Google.
So 2 years later, when the lesion returned I didn’t bother mentioning it although eating anything spicy became impossible and it was sensitive and had a wee hole in the middle and my breath stank.
I reckoned I would deal with it once I had time when I retired.

So 3 years passed _ and I ran out of time.

I was told much later that if I had managed to wait until retirement (another 3 months) to have it dealt with the repercussions would have been very serious. The cancer was very aggressive.

Pre-op _ The Tests

I spoke to my line manager and the occupational nurse and informed them that I would pass on info as I had it. I also told the guy who worked on the same job as me on the backshift as I felt he needed to know that I might be off very soon.
I started to lose weight as eating was difficult_ and I was tired all the time.
The next few weeks were filled with hospital appointments: CT scan, MRI scan and lots of x-rays and blood tests. The MRI is very noisy and I had to wear a sort of mask to keep my head still. I had a needle thing on the back my hand so as they could inject me with dye. It took about 45 minutes.
I got a set of headphones and was asked what music I wanted. Pink Floyd. The last track before they finished the scan was “Comfortably Numb”. I thought that was hilarious.
And a flu jab was strongly recommended by the Macmillan nurse when I asked so I had one.
And the cancer got bigger and sorer. My ear and jaw hurt.

And I went to work.

I needed the anchor of work as suddenly everything I thought I knew about my life had gone leaving me very vulnerable, and besides, what else was I going to do?

I was under pressure to complete work at home for some of my private clients before I went into hospital. This was just coding work for a new website and also some new hardware for another client. To my relief and theirs, I managed to complete both.

A month after the diagnosis, the occupational nurse at work called me in to ask me how I was doing. I told her that such medication as I could use at work safely wasn’t working. She indicated that I was a fool to be there at all and why hadn’t I contacted the Macmillan nurse for appropriate pain relief? So I went home after speaking to my line manager and my wife contacted the nurse. The next day I had seriously strong cocodamol and the day after I was given a bottle of morphine. I took the cocodamol every 6 hours. It made me very sick to begin with but after a conversation with the toilet bowel, this eased off. I kept the morphine for emergencies. I kept a record of what I was taking when as it quickly became obvious that keeping track was difficult. I started on the morphine. Mostly at night but sometimes during the day.

I was looking forward to having the surgery and putting an end to it. I remember waking up in the morning to find blood from my mouth on the pillow at least once. I was doing a lot of walking as I knew that I needed to be as fit as possible for the up and coming operation. I spent a lot of time clock watching waiting to take the next lot of pain relief. I met with the surgical team and was told roughly what was going to happen. I had to sign lots of paperwork giving permissions including allowing any tissue to be used for research. I mentioned that I had Raynauds. That did cause a bit of consternation and they had to change the way that they had expected to operate but I’ll come to that later.

Into the Operation and ICU

I was admitted for surgery in early November, about 2 months after first contacting the dentist and a month after the diagnosis. My wife, who had been with me at every possible moment during this difficult time and a very good friend drove me up to the hospital which is about an hour’s drive from my home. I couldn’t drive due to the medication and also I was really hungry as I had to fast before the surgery.
There were more interviews with doctors. We got directed to a side room with a bed with a horrible hard lumpy pillow and said our farewells. I showered and shaved and put on my new pyjamas bought specially for the occasion. I didn’t sleep well.
I was prepped up for theatre the next morning (i.v. needles in the hand, charming short theatre gown, flat out on a trolley) and looked at the clock just before they put me under. The young trainee surgeon (a most pleasant man) gave me a clear plastic mask and told me it was just oxygen. All the surgical team looked very focused as they went about their duties around me. I wasn’t at all worried or apprehensive. The mask and gas tasted of nothing much. It was 9am.

My next memory is looking at a clock from a bed where I was propped up. It said 7.30 but morning or evening I did not know. I had been told that I would probably be put in the burns/high dependancy unit for a day or so but in fact I was in ICU. I had lots of tubes sticking out of me. I could not talk as I had a tracheotomy which was attached to a long ribbed pipe. I was being given 80% oxygen. I have no idea what else was coming in the i.v. lines. I had a tube up my nose (feeding tube), a catheter for urine. Another line stuck in me to help move the air in my tissues. I was aware that the pain in my tongue had gone. I tried to look at my surroundings but could make no sense of what I could see. My eyes didn’t seem to be working properly. My vision was quite clear but I could not make sense of what I could see.
I don’t recall much of what happened in ICU and what I do recall is fragmentary and mostly unpleasant.
I do recall being very sick, several times I was told later. This was a bad reaction to the anesthetic. I think I got an injection for that. The feeding tube ended up coming up as well and finished up coiled at the back of my throat which was uncomfortable. It seemed ages before anyone noticed that and removed it. I couldn’t tell anyone as I couldn’t talk.
I recall needing a bedpan and was able to communicate this without talking. My wife was there at the time because she told me about it later. They got me one in time, but had to clean me up afterwards.
I don’t know how many times they had to change my sheets.
I’m told they bathed me fairly often but I have no memory of that.
They kept taking x-rays. It had to be done with portable equipment as I couldn’t be moved.
At some point I recall being in great pain and terror. I felt so bad I just wanted to die. I felt that I was very slowly suffocating and I was trying to breathe past the tracheotomy. It seemed to go on forever.
My wife said that watching me being in such pain and fear and with all the tubes sticking out of me was heart breaking. She showed me that I could give myself morphine by clicking a switch, but I was so weak that it took me several goes to click it. Then she found that it had been accidentally disconnected. The nurse reconnected it immediately.
They gave me diazepan just to keep me sedated. The mattress was air filled and kept moving with a rippled effect to stop me getting bed sores. This felt very strange.
The morphine and other things I got seemed to do the trick keeping me quiet for a while until a nurse came along and removed the oxygen tube from the tracheotomy to clear it without telling me and the terror that caused has to be experienced to be understood. I have since been told that even when a patient seems to be unconscious they should always be told what is happening or about to happen for that very reason.
The nurses kept clearing my airway with a suction device that they stuck down the tracky tube every so often. Most people who I have spoken to months later at ICU Steps (an exclusive club that no-one want to join for people who have been in ICU) hated it but I found it very relieving. But most liked the nebuliser. No accounting for taste.
My wife told me that the nurse put some cream on my lips as they were getting very sore. I gave her the thumbs up and the nurse said “You’ll not be so pleased to hear that it is pink!”. It wasn’t, but it raised a laugh from my wife in a place that can be very grim.
There is no time in ICU for a patient. The clock is meaningless and there is no differentiation between day and night. There is always someone beside you and there is always something going on although I didn’t find it noisy. There’s a battery of screens beside you monitoring your vitals. The drugs mean that a minute can last forever and an hour can pass instantly. I have no recollection of anybody in the ICU. Just gentle voices and strong hands.
I now know that that things didn’t go quite to plan. During surgery I am told I got surgical emphysema.
Sometimes bad stuff happens.
I can’t be sure but I do know from the mark on my right side that a needle or maybe a cannula was inserted into my right side and later on after I left ICU to go to a ward, my skin crinkled and popped underneath like bubblewrap to the horror and amusement of our younger grandson. The pain on my right side was unbelievable and barely ameliorated by the morphine, diazepan and paracetamol. That was also reason for all the x-rays and the concern for one of the consultants who came to see me frequently I am told. I have no memory of his visits at all.
Some time later the original tracky was removed to be replaced by a “bullnose” one. This one was shaped like a “T” and had sponge filters on both sides and allowed me to talk. The down side was that every time I coughed, the filters went flying across the room and hit anyone who was nearby. Later on I was given a nebuliser. Several times in fact. Just to help clear my lungs which were filling up with guck. I hated it. I still had this tracky in when I was taken up to a ward to continue my recovery.

The Surgery

I had had a hemi-glossectomy and partial neck dissection. The surgeons had removed half my tongue and replaced it with a flap _ that is tissue from my outer right thigh. They couldn’t use tissue from my arm as due to the Raynauds the blood supply there was poor. They also needed more tissue than the forearm would yield. They also took out 4 teeth, 2 on the right side in preparation for radio therapy. The surgery lasted 10 hours. The cancer was gone from my tongue and so was the pain. As a precaution they had also removed a salivary gland and lymph gland. All they found in the lymph glands was a couple of cancerous cells. The 30 cm wound on my leg needed no dressings but was stitched up with great coarse black stitching.

The Ward

On the 4th day, all the lines were taken out but the i.v. needles were left in my hands just in case. I was taken up to the ward, pushed by a porter who couldn’t go fast enough for me, and parked opposite the nurses’ desk. I remained there for the next 10 days. I was told that that is where they put you if they want to keep a very close eye on you. The tracky came out the next day to be replaced by a giant elastoplast. Every time I spoke or coughed I had to hold the dressing or the air would come out of the hole where the tracky had been. giant elastoplast Above this was a huge dressing covering the partial neck dissection (a cut of about 30cm) which had to be changed every day. Shortly after my arrival in the ward an new feeding tube was inserted into my nose and I was given yet another x-ray to be sure that the tube was properly in my stomach. Then the nurse removed the steel wire that shows up on the x-ray and the tube was stuck to my face. I grew to hate that tube.
There was some debate as to whether I might have to go back to theatre again. Part of the flap had failed and had died so I didn’t get anything in my stomach for some days in case they had to operate on me at short notice. I hadn’t in fact had any nourishment for over a week at this point and you lose muscle mass at a ferocious rate in ICU so I was 10Kg down on my usual weight. And I was always pretty skinny at 70Kg at height 1.8m. I looked like an escapee from a concentration camp. Strangely, I was not hungry at all.
Fortunately, it was decided that I wasn’t to go back to theatre so they connected me up to a bottle of a milky substance and it drained into me over the next 10 hours. After that all my food was given by mouth, mostly stuff they called 2cal which is a highly nutritious milky liquid flavoured with strawberry or other fruits or banana or chocolate or (my favourite) vanilla. The big advantage of the feeding tube was that all my medication was given through the tube so I didn’t have to taste any of it. The tube was then cleared with iced water straight into the stomach. That, strangely enough, was very pleasant. I managed to eat porridge and various pureed foods and sometimes I was given jelly and custard and cream. The dietitian gave me a special spoon to eat with and advised me to try eating very mashed up gloop as soon as I could and I was given menus to choose from.
Eating was very hard and took me a couple of months to learn again. My sense of taste has changed and I don’t really have much taste now anyway. To clean my mouth I had a sponge on a stick and some mouthwash.
I had to wear long white stockings all the time. I came to despise them. I had to wear slippers when walking about as I got into trouble for not using them.
Various staff came to see me _ a speech therapist and a dietitian. Occupational therapists handed me leaflets about what I should be doing to keep me from seizing up and asked me to walk up a flight of stairs which I did. I was utterly exhausted from that first time around so I practiced that over the following days. The speech therapist only saw me once as I was able to talk clearly enough almost immediately but gave me a leaflet with various things to recite.
From day to day the (very pretty and very charming) specialist nurses would carry me off to their little room to redress my neck wounds: they used to shave me as well. One of them was busy removing my bristles one day, bent close over me to get some part of my chin when a consultant with a very dry sense of humour walked in, looked at us in what might have been seen as a compromising position and said he was sorry to butt in and that he would come back when we were finished _ in very syrupy tones. I had to smile.
Every day the one of the consultants came on his rounds with students and had a quick look at me.
I recall asking for and getting a bath. I told the nurse that I had had no sense of embarrassment about nudity (I never have) and she said that she didn’t either. I was slowly lowered into the bath by some kind of lifting contraption. It was wonderful. And then she washed me very gently. Oh to be truly clean!
I used to get hungry when I woke up in the early morning, maybe 2.30 am and the staff were always willing to give me as much 2cal as I wanted, but not banana or chocolate (ugh!).
The specialist nurses came to take out my stitches when my wife, daughter and grandsons had just come to visit. It looked like it was going to take an hour or so. A long wait for them I thought and wondered if they would like to accompany me so as we could talk while the nurses worked on me. The nurses said OK and everyone was fine except the elder grandson who is a bit squeamish but he came anyway. It didn’t hurt at all as they removed lots of black thread from 60cm of surgical wounds. The younger grandson was fascinated. Then we went off for ice cream at a hospital café. It was delicious.
I had my tablet computer with me and I had previously recorded hours of music onto it. I listened to that a lot. The ward had wifi too so I could email and surf the net. But mostly I dozed or tried to read. I had no concentration so reading was difficult. I walked around the ward to build up some strength. But, lets face it, hospital is boring.
I used to get out of bed every morning to wash myself with a facecloth from a handbasin and shave as best I could in the big bathroom as I hate being unclean. I’d wake up every morning to find my pillow and sheet soaked with blood and drool. The sheets were changed every day.
One morning I kept graying out and it took me 45 minutes to wash. Then I couldn’t stand up and a nurse had to come and get me. They connected me up to check blood pressure and pulse. And couldn’t find a pulse. And the blood pressure had dropped through the floor. It took 4 hours before that rose again.
I got jabbed every night with blood thinner in case I got a clot during the night. I was told by a nurse that a stay in hospital like mine is a sure cure for fear of needles. I felt like a pincushion!
I was offered something to help me sleep at night as the ward was busy with people coming and going all the time. Sometimes I took it and sometimes I did not.
I do recall going to sleep one night and there was a woman in the opposite bed. I woke and a man was now opposite me. In the time I was there (10 days) that bed had 4 different people in it.
There were lots of little things that made me smile: the way the cleaners blithely moved all the furniture with no regard for whether the beds were full or empty so that they could mop the floor; the amazing knitted snowman beside the nurses’ desk; the young woman who zipped about in her mobile wheelchair.
There was one time of terrible depression when I could barely speak without bursting into tears. A consultant just happened to be passing by and I asked her if this was normal after such an operation. She spent nearly an hour just talking with me, bless her. And yes, it is normal.
The feeding tube was removed eventually and I had to take all the medication (there was a lot of it, all set out in little plastic cups) by mouth and it was VILE! I couldn’t handle pills so everything had to be crushed and taken in water.
The dietitian came to me with some fresh fruit she had bought for me (how decent is that!) to try. This was just before I was discharged. She said that this might be very hard as the skins are difficult to work with. The tiny slice of nectarine was like an explosion in my mouth. Wonderful. And so was the more difficult piece of mandarin.

Going Home

My time there was ending and I was moved out of the main ward into a side room. I missed the movement in the ward, but could tune the TV or radio to whatever I wanted. I admit that I was really looking forward to getting home and to sleeping in my own bed with my own things around me. My wife and best mate came up to get me and drive me home. The car was only a 400 metre walk through the hospital. I was exhausted by the time we arrived at the car. So I was home. neck_dissection But the dressings needed changed and I still had work to do to regain fitness before I went back to work.
I was still drooling blood and saliva at night as I could not control my mouth properly so the pillow covers had to be changed daily. I destroyed a pillow over the next few weeks by contaminating it beyond use.
The local practice nurse showed me how to change the dressings at the GPs surgery.
My wife had to chase up 2cal for me as eating was initially so hard. We finally got over 60 bottles of the stuff from the doctors a week later but until then I largely lived on Complan. My wife also made things with full fat soft cheese, avocado pear, full cream jersey milk in angel delight, porridge and anything else with lots of fats in it to help me regain weight. Everything had to be liquidised so my wife had to buy a liquidiser.
I bought a small mirror to help me eat as I wasn’t sure where the food was going. I had to have a napkin by me all the time as the food tended to dribble out. Nonetheless, my ambition to eat a hamburger roll and a pizza (not at the same time) were realized in early January, 2 months after the operation.
I had to get help to shower and wash my hair from my wife. Everything took so long to do and even straightforward tasks left me exhausted. Just simple things like shaving had to be planned out.
I started walking out as soon as I could but managed only 50 yards the first day. I was up to 5 miles by the new year but was told not to swim until the throat wound was fully healed which did not happen until mid January. I managed 22 lengths but had to do them 2 lengths at a time. When younger, I used to do up to 400 lengths and run half marathons and cycle.
I had to visit hospitals for various appointments to follow up. At one of them, one of the consultants who operated on me told me that I would not need radio therapy. I was pleased to hear that as it can be most unpleasant.
In early December I was eating canneloni when I realised that something strange had happened in my mouth. I went to a mirror and found that the dead flap had gone. I had eaten it. It was in fact part of my leg that I had eaten. From vegetarianism I had gone to autosarcophagy. All that was missing was Chianti and Fava beans. The gap healed up in a week as the second part of the flap joined to the original tongue all by itself. It did not affect my speech or ability to eat at all.
I was able to drive short distances by early December.
I went back to work at the beginning of February. I was told to work no more than 4 hours although I did a bit more from time to time. I only had 2 weeks to work before I retired but just wanted to complete my working life by working.
I was seeing the consultants roughly every month now and eating anything I wanted.

Onwards and Upwards: Later

In so many ways the nursing staff on the ward were just great. Always positive and helpful and cheerful. In fact all the staff were just great: the doctors, the cleaners, the auxiliaries, the porters. I cannot thank them enough. The person who was worst affected was my wife. I think it was harder for her than for me. She did have the presence of mind to keep a diary. It now makes very funny and also very heartbreaking reading. She wanted to take a photo of me in ICU but a doctor told her not to. I wish she had. If I could have seen how I looked I could have better shared the experience as it was for her. Her support and that of our family and friends has been very helpful.
I am also very grateful to the HR department at my work and the occupational nurse. Their support made a huge difference.
Sometimes good stuff happens.

ICU Steps

I was invited to attend a meeting of ICU Steps. It’s just a get together for people and their relatives who have been in ICU to compare stories. If you have not been in ICU, you cannot know just what it is like. It is, as I have said before, an exclusive club that no-one wants to join. Some of the stories are just terrible. Some of the stories are very funny. I found it a useful experience and have been back a second time. The nurse who organises the get togethers is most helpful: feeding in medical info to answer questions that we may have. Most of the group were in for sepsis and I haven’t yet met anyone who passed through ICU with cancer. I have read that some people who pass through ICU get PTSD. I don’t know about that but I did wake up screaming one night thinking I was back in ICU. It only happened once so I guess I am OK.

Retracing Footsteps

I said earlier that my wife was a bit traumatised by the experience. She asked if I would come with her back to the hospital some months later. So we retraced the journey she made daily when I was in ICU and she gave a commentary as we travelled. We took the train and the bus and also ate the food she ate and the sights she saw. Together we went back to hospital to look at some of the things I could see from the ward window but could not reach. I think it helped her a lot.

Happy Ever After

My tongue is not very mobile and I cannot extend it past my lips.The tongue is attached to the floor of the mouth at its tip with adhesions. I cannot pronounce “r” or “s”. Some things have proved either difficult or impossible: chewing gum and toffees are just impossible. Apples are difficult as are nuts. I now hate chocolate and bananas. Eating takes a bit longer than it used to. I still have to have a napkin handy.
I have been busy doing improvements to our house since I retired: new shelving, lots of gardening, reworking the study with new filing cabinets, painting guttering and repairing window ledges, fitting a new radiator. Relaying paving slabs and building a new shed. Also, lots of computer work for clients.

Afterthoughts

And so I am alive and pretty healthy where I could so easily be in great pain or dead. A huge thank you to the surgical team who gave me back my life and showed me the value of that life. And also to the nurses and support staff who kept me alive and later helped me recover. And to my wife and family who were there for me and friends and neighbours who supported them.
The worst thing about cancer? The pain from the cancer, and the pain from seeing everyone so upset and the post op pain from the air in my tissues. The terror I felt in ICU when I felt that I was slowly drowning and could not get a breath (I was on 80% oxygen!). The terror that comes from being unable to communicate, from being utterly totally helpless.
The best thing about cancer? Getting fast tracked to any medical care I needed both pre and post op _ pain killers, scans, flu jab, seeing the local practice nurse about dressings, getting additional dietary supplements, getting any odd physical peculiarities (swellings, aches) looked at almost immediately: I’d mention the big C and things just happened quickly. And receiving so much care and kindness from everyone. It has also opened up a line of communication to people I meet who have been very ill. A common experience of major illness seems to create a bond that nothing else can.
I reckoned later that it was just so unfair that I should get cancer. I used to run and swim long distances; and cycle too. I haven’t had a drink or a cigarette in over 30 years. I have been vegetarian for over 30 years and have weighed about 70Kg since I was 18.
Sometimes shit happens.

Advice

    You may never need this, but be prepared.

  • If you are heading for major surgery and you are able, get as fit as you can: walk, swim, do exercises that make you breath heavily. Being pretty fit shortened my time in hospital and hastened recovery a lot.
  • If you smoke, stop. Hospital is no place for the unfit.
  • Major surgery is pretty safe these days but there’s a good reason why they get you to sign these forms. It can be occasionally dangerous despite the best efforts of the surgical team and can be unpredictable as I am witness to (see above). Make sure your nearest and dearest know where all your important papers are: will, POA, bank account etc.
  • Don’t worry overmuch about pain medication. I was told after mentioning possible addiction to opiates that it was the least of my worries and if I was only taking them to relieve pain then I should have no problems; and I didn’t.
  • If you are told you might finish up in ICU with a trachy, work out other methods of communication like basic sign language or have your main visitor bring in big pens and a small whiteboard.
  • If you wear specs to read, make sure that they are handy and they can get them on your face.
  • Record music on an iplayer or something. You may not be able to use it in ICU, but it may help.
  • Talk about it beforehand to your main visitor (your wife, mother, husband, father etc) so you both have a strategy in place. It is possible that you won’t be sufficiently compos mentis to be able to use them, but I would have been able to use them all despite my drugged state. And it gives your visitor something to do. My wife found being beside someone semi comatose and struggling for breath or in pain very distressing and she felt she could do nothing to help. She just talked to me about anything, or read a book or just watched or talked to the nurse.
  • If you are in ICU you’ll be surrounded by bleeping screens and have lots of tubes coming out of you so you’ll not be looking your best. Don’t worry. You won’t care.
  • There’s also a lot of waiting around if you’re a visitor and you may get rushed out if something seems to be going wrong. The waiting rooms are not hugely exciting and you may spend a long time in them.
  • I found the tablet computer to be a godsend. And your visitor can use it if you’re not ready for it. And bring books.
  • Google around and see what you might expect and maybe ask the surgical team what to expect. Be as prepared as you can to help reduce the shock.
  • Keep a diary. Events and sequence of events becomes blurred quickly.
  • I took pyjamas and a towel and washing kit. The PJ’s provided by the hospital are really comfortable if not stylish and they provide towels every day. I brought a face cloth as there was no way I could bend to put my face in water. A toothbrush for me was a waste of time and the hospital provided stuff to clean my mouth. In my case shaving was important but difficult. The giant sticky plasters won’t stick to bristles.
  • Label your case/bags or they will get lost. I found this out the hard way.
  • Bring a sense of humour with you. The darker the better.
  • Don’t worry too much. It’ll probably be OK.

The End?

I haven’t mentioned everything that happened. Only the stuff that seems important looking back. The worst bit was ICU. ICU is not a nice place to be but it’s a good place to be if you are very ill. I hope I never go back there. If the need arises again we shall be better prepared.
I am no hero and I left the ‘fighting cancer’ bit to the surgeons and medical staff. I just wanted my life back and an end to the pain. But I was surprised at how much I would do to stay alive. It has been an adventure and much of the time I have approached it in that way. I didn’t set out to have an adventure but it has been interesting and occasionally exciting and sometimes very scary. It’s been a seminal and life changing experience.
Hope this helps.

P.S.

Here are some scar selfies after a year.
The neck. neck_scar The leg legscar Although the surface under my jaw and around the cut in my leg are dead as the nerves were cut, the wounds’ underlying tissue on my neck and leg ache and sting from time to time. As you can see the scars are fading with the tracheotomy scar the most noticeable in normal light. I wear a scarf much of the time as these areas are sensitive to cold and sunlight and also I am very aware of the disfigurement.
The tongue now (18 months on) looks like this. Not very appetising I am afraid! The reconstructive surgery was to my right hand side tongue (left on photo). The flap that I lost was where the seam is now. tongue I do get tired more quickly now although I now swim 3 times a week doing up to 3 Km in a single swim and walk up to 7 miles maybe 2 or 3 times a week. I have not fully regained all the weight I lost and possibly never will, but I seem to be none the worse for that. There have been some slight and odd changes to my body that I cannot account for: the muscles at the front of my left lower leg feel very odd now, and I have to be in reach of a toilet all the time.

I noticed a swelling under my jaw on the left hand side some months ago and queried the consultant about this. I was sent for an ultra-sound scan and it turned out to be nothing more than a swollen saliva gland. The saliva gland on the right side had been removed during the operation along with some lymph nodes.
Some months after that, I was again sent for an ultra-sound scan as a matter of routine. The swollen saliva gland of a few months back has now shrunk completely away and no longer functions. No worries as there are some more in the mouth which still work.
One of the consultants also picked up on a difference in size in my tonsils and asked a specialist in ENT to cast his eye over them. He reckoned that there was no cause for concern.

It’s now been over a year and a half since the operation. My check ups are now 2 months apart.
As you can see I am being well looked after and all is as well as it can be. The post op care has been as conscientious and caring as the pre-op and hospital care.

The End _ August 2022

I have just been for my last checkup. I am clear of cancer. The places where I was cut still ache or sting from time to time. A price I think worth paying.

So I thought it was all over…

Fast forward to 2024 and a visit to the dentist where I had the usual check up. All the remaining teeth were no worse than they had been but … she noticed a wee strange red bit where the tongue had been joined to the tissue from my leg. I was told that the hospital would be in touch and they were. Just a few days later. I saw a consultant who handed me over to another doctor. He numbed my tongue (always a rather unpleasant procedure) and took a sample for a biopsy then stitched me up. No surprise. I had been there before.

The next appointment was for another procedure. This time I was numbed up again and some tissue was cut away from my tongue along one of the seams where the graft had been sewn to my tongue. All was stitched up. Not much pain after the anaesthetic wore off which was great.

Some days later I received a letter making an appointment for an MRI scan _ with dye. It took about 45 minutes. Very boring. And no music this time!

Next appointment was shortly afterwards to get the MRI results. The results of the MRI were OK.

About 2 weeks later I was back in the hospital for another procedure but this time tissue was cut away from a different part of the joint where the tongue and the graft met. Numbed up and same old same old.

I was told that the results of biopsies conducted on the tissue that was cut away weren’t cancerous but a level of pre-cancer that might be a cause for concern and best to take away the suspect tissue.

I returned once again to see the consultant who had had most to do with my treatment about 2 months later after all had healed. It all looked very well to me and she reckoned likewise. I have had another check up since then and again all looks good. I am to go back again for another check up in a couple of months. I suspect this pattern may repeat for some time. They are taking very good care of me.

It has been strangely pleasant to meet up again with all the health professionals that had seen me over a period of several years post op. I have found them very warm and caring with a nice sense of humour. All a credit to their profession. Thanks again to them.