Real Life Laryngectomee: Alec’s Story

My name is Alec Smith. I am 58 years old and this is the story of my laryngectomy – before, during and after.

I had my laryngectomy on 24th August 2010 at the Norfolk and Norwich University Hospital, but the story starts two or three years before that.

I work as a cleaner, employed by a facility management company that looks after laboratories and offices for the Centre for Environment, Fisheries and Aquaculture Science (CEFAS). I started getting a slight tickly throat and husky voice towards the end of my shifts, but, by the next day, everything would be back to normal. Some days, I had no symptoms at all and just put it down to being a smoker for the best past of 40 years.

For the next two years, I did nothing about this tickly, husky throat and, month by month, it gradually became worse until I virtually had no voice and a bad cough. I hid my head in the sand because there was neither pain nor any real discomfort and ignored pleas from my friends and family to see a doctor.

I continued working and going fishing but was beginning to notice that I was becoming more and more breathless and was producing huge amounts of phlegm and mucus.

One evening at work, I could not get my breath and had to go home and, from here, things escalated at an alarming pace. I started to rapidly lose weight and was permanently tired and breathless. My son came home one day and found me practically unable to breathe and had to take me straight to the A&E Department at the James Paget Hospital, Great Yarmouth. After an examination, I was given oxygen and sent home with antibiotics, as I had a bad chest infection. I also had an appointment to see my GP the following morning. During this appointment, the doctor nebulised me, gave me a course of steroids and, after a brief check-up, made me an emergency appointment at the ENT Department.

The next day, I collapsed with more breathing problems and was taken by ambulance to the James Paget Hospital, where I was kept in the assessment ward for the next three days. Two days after this, I went to the ENT clinic for tests, where I underwent an endoscopy and was told they suspected I had throat cancer. I was then booked in for a scan and a biopsy.

If I am honest, it wasn’t a great shock when they told me I had cancer, I was able to accept it and stay positive no matter what. I had the scan and biopsy a few days later and it was decided that I needed an operation to open my airway. This was scheduled and then cancelled twice! I was then sent to the Norfolk and Norwich Hospital to discuss my options and was given the choice of either having laser treatment to decrease the cancer, followed up with radiotherapy, or going straight for the laryngectomy. After advice, I decided the laryngectomy was my best option.

Illustration

Laryngectomy illustration

A couple of days later, I went back to the hospital to meet a chap who had already had a laryngectomy around six months earlier. I found talking to him to be very helpful and reassuring. After this, my operation was scheduled to be in a fortnight’s time.

I went into hospital the afternoon before the operation. I had to sign paperwork and talk to the anaesthetist and the surgeon, who went on to explain what would happen the following morning and also what I should expect upon going back onto the ward after the operation. Following this chat, I phoned my wife to tell her what time the operation would be going ahead and then got a good night’s sleep. I don’t remember feeling scared – I was actually more relieved that everything was finally going ahead and being sorted out, as I had been steadily going downhill over the previous two weeks.

I don’t remember anything until I was back in my room on the ward. I was hooked-up to a pump so that I could administer my own pain relief and I also had a drain in each side of my neck. I felt around my neck rather tentatively and encountered all of the stitches and staples. It was strange and uncomfortable but not particularly painful. My family had been told that I wouldn’t be up for seeing visitors that day but, when my wife rang to see how I was doing, she was told that I was sat up in bed and reading and would benefit from a visit, so my son came to visit that night.

Two days later, I was taken off the morphine pump, as I wasn’t in a great deal of pain and actually felt good. On the third day after the operation, I was starting to feel fed up from lying in bed, so got up at 6am for a shower and a shave and was dressed in my jeans and t-shirt when the nurses came into my room. Prior to this point, my feeds and medication were being administered via a gastro-nasal tube, which the nurses had been in control of. However, going forward, I took over this responsibility. I was also becoming frustrated at not being able to speak and writing was my only means of communication – and I’m a slow writer!

On the fourth day, I had a massive pain in my chest and was in agony, so was whisked off for a scan and was found to have two blood clots on my chest. I don’t know what drugs I was given, but they worked miracles and, by 8pm that night, I was back to being sat up in bed and laughing. As a result of this, I had to spend the next nine months on Warfarin.

On either the fifth or sixth day, my tracheostomy tube and drains were removed. Barbara from “Head and Neck Support” showed me how to clean and take care of my stoma and indwelling speech valve. I took to this straight away and it just became something I would have to do every day for the rest of my life. I was feeling so much better at this point and was up-and-about, walking around the ward and the hospital grounds.

Nine days after the operation, I was really excited, as I was being taken down to Radiology to see if I was healing up. If everything was ok, I could go back to eating real food again, plus it was also my birthday! Several of the staff came to watch my test and I sailed through it. I have to admit I had tears in my eyes when they said everything was ok and they even brought me a carrot cake with one candle and sang Happy Birthday! I spent the rest of the morning learning how to use my new voice which, to be honest, I had sussed out the day before when I realised that, by pressing my cassette to close off my airway during exhalation, I could speak! It was a really strong, deep voice and, after only whispering for the past two years, it felt incredible to be heard and understood again. Dinner time came soon enough and, after nine days without eating, I was starving and managed to polish off two helpings of Shepherd’s Pie, a jug of gravy and apple pie and custard. It took a long time to get through it all, as swallowing can be a problem following having a laryngectomy, but I can manage to eat most things as long as I take my time.

Now, all I wanted was to go home. I crazed every doctor I saw that I was fit enough to go home. Originally, I was told that the going rate was usually 10-14 days in hospital and this was only the ninth day. I guess I got lucky, as they couldn’t think of any real reason to keep me in! The next couple of hours were spent getting together all the kit I would need to keep my stoma and speech valve clean and getting release papers sorted. They were quite concerned about letting me go, as there wasn’t any cover locally in case something went wrong over the weekend, but I went against advice and left hospital after only nine days. That weekend was quite uneventful and was the start of a routine that I now have to follow every day.
Before I left hospital, it was arranged that the District Nurse and “Head and Neck Support” would visit on the Monday morning to check that I was managing ok and that everything was clean and healthy and to show me how to order the baseplates, cassettes and other equipment from the suppliers. On the Monday morning, the “Head and Neck Support” nurse duly arrived at exactly the same time as not one, but three District Nurses! They soon left, as they could see I was doing really well and that their help was not really required. From then on, things seemed to roll along quite nicely with no problems. Swallowing became a lot easier as long as I had gravy or sauce with my food.

Almost two months after the operation, I was scheduled to undergo a course of chemotherapy and radiotherapy over a period of four weeks. This is standard treatment following a laryngectomy and the chemotherapy consisted of being hooked-up to a drip for around three hours over four consecutive Monday mornings. The radiotherapy was a daily treatment, which entailed being fitted with a mask that was then attached to the table you are laid on, so that you are immobile. This is a very precise treatment and it is critical that there is no movement. The treatment only lasted for five minutes at a time and was daily, Monday to Friday, for four weeks. Apart from the discomfort of being attached to the table, I could not feel any of the procedure. I had no ill effects at all from the chemotherapy but, after two weeks of the radiotherapy, my neck felt very sore, as if I had sunburn on top of sunburn and then more sunburn! My throat was also sore and swallowing became a problem and this lasted for several weeks after the treatment had ended before gradually returning to normal. The chemotherapy and radiotherapy was described as being “preventative” – hopefully stopping any return of the cancer. I then had regular check-ups and, other than the occasional speech valve change due to leakage, I got my fitness back, put on lots of weight and went back to work.

I didn’t have any real problems until approximately a year after the operation. I wear a spacer in my stoma (called a ‘button’) to stretch and keep the stoma open. One evening, I had a coughing fit and, during this, I inhaled the button. It just shot down my neck and out of sight. This had happened once before and my wife was able to grab the button with tweezers and pull it out, but this time it was long gone! An ambulance was called and I could see a bit of panic in the ambulance crew’s faces, as they had not encountered anything like this before! It was not really dangerous, as it could only go one side or the other and not stop me from breathing, but it did make me cough. A&E staff tried to remove the button and a specialist doctor was called, but the button could still not be retrieved. At approximately 2am, it was decided I would have to go into theatre later that morning and I was found a bed for the night on the ward. When the time came, I was given a pre-med in case I needed surgery and taken off to theatre. I had never seen so many surgical staff – I think they’d all come along for a good look! A camera was introduced into my windpipe and the picture was relayed onto a big screen so that the folks dressed in green could see. In the end, it was all very simple – the surgeon introduced a long wire with jaws on the end and just grabbed and extracted the offending article. Half an hour later, I was dressed and drinking a cup of tea.

Up to now, I have not had any other problems with my neck, other than around six months ago when I noticed the valve appeared to be moving to one side, with the skin growing over it (granulation). I was also noticing that my voice was disappearing and I had developed a throat infection with slight bleeding. I, of course, panicked and rang “Head and Neck Support” straight away. The granulation was burnt off in around two minutes, the infection was treated and cured and I was left with virtually no voice. The decision was made to change the valve, which normally only takes a few minutes and entails pulling out the old and inserting a new one. The old valve was pulled out and, for the first time, was painful and bled. After much pushing and probing, followed by a camera down my throat, it was found that it was impossible to insert a new valve due to the fact that the flesh in my oesophagus had completely healed over. The only solution was to let nature take its course, let everything heal up and then go for a re-puncture. I was given the choice of either a local or general anaesthetic and I chose the local, as this meant I could leave hospital straight after the procedure. It all took just over an hour to complete and entailed firstly swallowing and then being injected with the anaesthetic. A camera was then put down my throat and the image displayed on a screen so that they could see what they were doing. My wife found this quite fascinating and I guess I did too! Starting with a needle and then various enlarging instruments, we got the insertion of a catheter, which was to stay in place for a few days to allow the puncture to heal into a nice, round hole. This did frustrate me, as I was expecting to leave with a voice that day and obviously didn’t. Frustration is probably the wrong word – I was actually really upset but, after a pint of Guinness and reflection, I could see that it was only for three days and then I would have my voice back.

After lots of measuring of the new puncture, my new valve was inserted and I could speak again. In fact, you could not stop me!

If after my laryngectomy I had been told that I wouldn’t be able to talk again, I would have accepted it. However, after having a good voice for three-and-a-half years up until the re-puncture procedure, I did shed a tear or two out of sheer frustration at not being able to make myself understood and, wrongly, my wife often bore the brunt of my frustration.
The re-puncture was one month ago and I have since been for my six-monthly oncology check-up and everything is great. I am happy, all of my team is happy and I am in great shape and feel really well.

To finish my story, I have to say that there is not much I cannot do. I am not on any drugs other than Levothyroxine to compensate for the loss of my thyroid gland. I do have to be very careful when bathing or showering, as any water could go directly into my lungs. Otherwise, I lead a very full and happy life; working, having foreign holidays and following my hobbies of gardening and fishing.

I have also been asked to talk to a few patients who have also been diagnosed with throat cancer and are facing a laryngectomy. I have also helped in Q&A training sessions with medical students so that they can hear from the patient’s point of view about living with a laryngectomy. I hope I have shown that you can bounce back from the most devastating news you will ever be told… and even have a laugh about it.

 

 

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