Real Life Laryngectomee: Janet’s Story

My journey started in Spain about November 2007 when I started with a cold.

So maJanetny people had colds and then a cough developed and would not go away.

So bottle after bottle cough mixture was bought.

It slowly cleared but my voice had seemed to change.

Early 2008 and still in Spain, I had severe sciatica which lasted about two months.

I was unable to walk and in terrific pain.

I had about 12 injections for pain relief, it slowly started to ease and I then started walking using a stick.

We  came back to the UK in April 2008 and you are probably wondering why I’m telling you all this.

Well with all that had happened in Spain I made an appointment to see my Group Practice Nurse, which was unusual for me as I rarely went to the doctors.

We  sat and chatted for a while as she was also a friend.

I told her all about what had happened in Spain but I mainly talked about the sciatica and my back pain.

But she kept on asking me what was wrong with my voice.

I just kept saying it was a cold and cough I couldn’t get rid of.

She prescribed a mild medicine as she wanted me to have some tests regarding my back.

By the time I arrived home she had left me a message on the answer phone to say she had made an appointment for me to see my General Practitioner that evening.

Later in the evening I went to see my GP who had been informed of all that I had told the Practice Nurse.

He questioned me over and over again about my cold and cough, and the change in my voice.

Then he asked if I had ever heard of a film star called Jack Hawkins[1].

I said I vaguely remembered him.

He went on to explain what had happened to him regarding his voice.

He then said he was going to make an immediate appointment  for me to see a consultant.

Within two weeks I had seen the consultant and his specialist team and arrangements were made for me to have a biopsy at my local hospital.

The results confirmed I had cancer of the larynx.

Arrangements were made for me to have a month’s course of radiotherapy at the Oncology Unit.

I was very afraid but I stayed positive.

I kept telling myself that all the pain of the radiotherapy was a means to an end… to get rid of the cancer.

Consultant appointments followed for a few months and I seemed to be doing fine, so I asked if I could go back to Spain for the winter, as we usually did, and just fly back for appointments.

They agreed and said they would see me in eight weeks which would have been the middle of December 2008.

We drove to Spain and had a nice few weeks which did me no end of good.

But gradually I was becoming very tired and losing weight, and the cough returned.

We  made arrangements to fly back to see the consultant and to fly back to Spain a few days later.

We  were leaving the car at the airport, but unknown to me, my partner was realising I was becoming very ill, so he left car keys in the apartment and hid the parking ticket in the car.

We  had friends who would check the apartment.

That flight home was horrendous for me and I kept having terrible coughing bouts and my throat felt as though it was full of glue, and this was affecting my breathing.

We picked up the hire car and drove home on a Saturday afternoon.

All I thought about was my appointment with the consultant on the Monday.

I had a terrible Saturday night and was getting worse.

My partner said on the Sunday that he would take me to A & E.

All I wanted to do was see the consultant the next day, but I eventually gave in as I felt so dreadful.

So I ended up in A & E and was transferred to a hospital ward.

The following day I was taken in a wheelchair to see the consultant.

He confirmed the cancer had returned and arranged for me to have a camera look inside my throat, before any decisions could be made.

It was now nearly Christmas and they made the decision that I needed a total laryngectomy which was scheduled to be performed at the Aintree University Hospital[2]  on the 12th January 2009.

I was allowed home for Christmas and New Year on the understanding that I would return to the  hospital  should any changes occur.

And so began the long wait for 12th January.

Christmas and New Year came and went in a blur.

On 11th January I started the journey to Aintree.

On 12th January 2009, I had my larynx removed and so began the long journey  to recovery.

After three weeks I was allowed home with a community nurse visiting each day.

After two days she said there was a problem with the wound, after much persuasion from her, my partner and my close friend, I allowed her to telephone Aintree.

They said I needed to return to the ward immediately.

After being examined they said the wound had developed a fistula and they would need to keep me in for 24 hours.

And so a nasal tube was inserted once again.

Little did I know that 24 hours would turn in to four months.

They explained a few days later that a hole (fistula)  had developed in the wound, probably partly caused by the radiotherapy I had received and it would have to be “packed”.

So started the daily routine of packing the wound.

Days turned into weeks.

All this time I had been using a white board to communicate but this was becoming tiring and frustrating.

I remembered I had been given a Tru Tone Electronic Voice[3] after the operation but I hadn’t used it.

My partner brought the Tru Tone from home, and now and again I would try to use it but the sound was so very strange to me.

Further, I couldn’t use it on my neck as it was supposed to be used, because of the wound, so i started to use it on my cheek with limited success.

But the Tru Tone practice was forgotten as I developed an infection which made me feel quite ill and tired and so I was moved to a side ward.

They decided to use Manuka Honey[4] on the dressing as it was not healing and they started talking about another operation by using the pectoral (pecks) muscle[5].

I begged them to give it more time as I did not want another operation and all that would be involved with moving the pecks muscle.

They were very understanding and said it would be the last resort.

So they carried on using the honey, and now it was a waiting game.

The dressings became more and more painful and I was given morphine injections in order to try to relieve this.

I was still in the side ward and I started to practice to use the Tru Tone on my own.

When my partner came to visit I would ask him if he understood my speech.

At first he found it very difficult but I continued to practice a little more each day.

Gradually and very slowly I started to feel a bit more comfortable using it and I was in-a-fashion, being understood.

After more than two months the fistula still hadn’t healed so they decided they would have to do the Pecks Major Flap operation and I had realised myself that this was the only option available.

So the operation was performed and a skin graft was taken to cover the wound.

I don’t know if I was weaker but I found this operation more difficult to come to terms with.

I was very tired and weak and I was still in a side ward on my own so I could sleep without being disturbed, which I did a lot!

A week or so later I was monitored throughout the night but in the morning I was rushed down to the theatre as the muscle from the pecks to the neck had become  infected which resulted in part of the muscle being cut away, and the skin graft had failed.

I was at my lowest ebb.

I had had three major operations in as many months.

I thought I would surely start feeling better but I was feeling worse.

About a week later I was given a couple of blood transfusions which slowly started to make me feel better and everyone was saying I was looking better.

But a small fistula had developed in the left side of my neck; not as bad but it still needed packing.

So yet another waiting game, during which I practiced using the Tru Tone.

All this time I was being given medication through the nasal tube and being fed through the night via the tube.

After about three months they said I could go out for the day, so the night before the night staff started my feed early so it would be finished earlier the next day.

They were all very excited at me being allowed out for the day.

We  were shown how to do the medicines through the tube and out I walked, albeit feeling very weak.

But I could finally see light at the end of the tunnel!

So began a few days out, and the fistulas were slowly healing.

I was still not ready to do the famous water test, but because I was doing so well and there was not a lot more they could do but just wait until I was taken off the nasal tube.

They taught my partner how to set up the feed machine and then they let me home, which they are reluctant to do while you have a nasal tube in place.

After four months and a being careful with feeds, medicines and lary dressings, etc., I was on my way home.

It was very emotional leaving the hospital unit.

I had become used to the Tru Tone and was asked if I would go into the wards to encourage people that they could communicate again.

All the staff came to wish me Good Luck and said I had nearly broken the record as the longest patient they had ever had in the unit.

But I just missed out by a few days!

This began the long journey to me being discharged.

I do not like saying “All Clear”.

After another month I finally passed the water test and the tube was removed.

With the help of community nurses and dieticians I became stronger all the time.

After five years of clinical appointments I was finally discharged in 2014.

I still struggle with the lack of neck and right arm movements due to the peck operation and also the frustration of laryngectomy, but the alternatives do not really bear thinking about.

I am still continuing on this long journey but for now we are back in Spain for the winter.

Janet Wigfield

[1] https://en.wikipedia.org/wiki/Jack_Hawkins

[2] www.aintreehospitals.nhs.uk/Pages/default.aspx

[3] www.griffinlab.com/Products/TruTone-Electrolarynx.html

[4] www.webmd.com/a-to-z-guides/manuka-honey-medicinal-uses

[5] https://en.wikipedia.org/wiki/Pectoralis_major_muscle

If you would like to share your story to be included in the Real Life Laryngectomee series please get in touch on enquires@ipl.uk.com or 0115 975 4074 or write to Freepost Address:
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