World Head and Neck Cancer - Alison's Story

Alison’s Story

Alison had laryngectomy (removal of the voice box), and reconstruction of her throat with part of her bowel in 2018. Alison communicates using a voice prosthesis or electrolarynx . She is able to eat a modified diet but requires a feeding tube to help her meet her nutritional requirements.

My story started back in 2018, for about a year my voice was hoarse and raspy. I put it down to forty cigarettes a day, but one day I noticed a lump on the side of my neck. I went to the GP and was then sent to St James's. I went in to see the doctor. He checked my throat, left the room and returned with another doctor, this happened again and they came back with a Consultant. I am not sure but I think his name was Prof. Reynolds. I was sent for a scan and referred to ENT and Consultant Mr Lennon sat across from me and said it is cancer. I said nothing, so he got my brother from the waiting room and said again it is cancer, I still did not say a word, but I could see the shock on my brother’s face, as we had already lost a brother to cancer not long before.

Dr Lennon told me I was to be admitted, I was never in a hospital before and I did not know how to handle being looked after. I was in St John’s ward.  I wasn’t afraid.  I felt very safe, everyone was brilliant. I liked the hospital.  I made friends and we are still in touch today.  ENT visited me every day. I was given a lot of information; it was a bit overwhelming if I am honest. Sometimes it would go into one ear and out the other. I had lots of scans, cameras and x-rays. Before the surgery, we met a lovely man, I think his name was Brian. He had had our op, so it was as if we were the before and he was the after. It put me right at ease. I was impressed with his speaking aid and thought this is not so bad.

Before surgery, I met consultant Dr Sinead Brennan who is from St Luke’s Hospital in Rathgar,  she and Mr Lennon work together at times. She came in to see me with her team. She would put the camera down, check about and leave. Mr Lennon came to see me the next day I think, he told me the tumour had doubled in size, so I think surgery was moved up. I was not allowed off the ward. All I could think was I was not going to be able to go for my walks. I am not one for staying still for long. I think I had my surgery within the week. I woke up for a minute when I was being put in a bed in the ICU department.  I remember my neck felt floppy and my head felt very heavy.  Every time I woke up it was dark with all those lights, I thought I was on a spaceship and half the doctors and nurses were aliens. The first day I woke when it was bright my family came to visit, I would not let them in, I didn’t want the aliens to get them. Trying to communicate was terrible. I still thought I could speak.  I would write things down and they wrote back- this drove me crazy. I was put back on the ward, I could not get out of bed, my curtain would be closed, it was very lonely because I didn’t know anyone in this room.  I kept telling myself this will not be forever.

When I was back sitting up it started to slowly get better.  The nurses took great care of me till I could myself. They would get me up and walk me around the ward till I found my own feet. I would have been lost without them.  Then I got a room to myself with my own shower, air conditioning, and TV. I got the feeding tube in, it was ok, I didn’t see the fuss. The nurses made sure I was well trained and able to look after myself when I went home. I was a bit nervous at first but I was fine. The only thing about the feeding tube was even though you couldn’t taste or smell your food, you missed that hand to mouth experience.

I was out walking one day and happened to pass Mc Donald’s. I didn’t notice I had stopped walking.  I was staring at a guy sitting in the window holding a giant burger.  Oh my God, I was only short of licking the glass! The poor fella was afraid to eat. That’s the funny thing, I can still remember what real solid food tastes and smells like.

I did my chemo and radiotherapy in St Luke’s in Rathgar. Dr Brennan was in charge of radiotherapy. I found that rough at the start, I had to get a mask made, I did not like that.  I felt I was being smothered. I was so relieved when it was done but because I lost weight I had to get another one done. Wearing the mask and being pinned to the table by my head was horrible.  It was only for a few minutes but it felt much longer. After a while I got used to it. I think I had it 33 times. Chemo was ok, Dr Cliona Grant was in charge of that, like Dr Brennan, she was lovely. The nurses were brilliant again, I think the worst thing about chemo was the tiredness.  It never seemed to leave you and the throwing up; that came unexpectedly. I had plenty of follow-up care- scans, weight checks, speech therapy many tips and advice, it was great. I’d be waiting for ENT Dr Lennon and his team and the dietitians would call me in to check my weight, ask about my diet; did I have any worries or problems eating. Speech therapy would take me and check how my valve was. I had a speaking valve put in and they would show me how to keep it clean, how to use it and check it is in place, give me advice. They all made it easy for me to contact them if I had any problems. I also have physio and lymphoedema therapy to help me.  Physiotherapy really puts you to work but they’re all very good.

Communication at the start and sometimes even now is hard. Especially on my family. You have to remember they are going through this journey with you, so try to be patient with them. I am lucky I am supported by an amazing circle of friends, good friends.

My message to people don’t put off seeing your GP- symptoms are like grief, it stays with you until you deal with it. So go visit your GP and to those who are getting this surgery, I would say accept what is going to happen, think positive, and if you can, laugh.

I am sorry about how long my story is.  I talk more now than when I had my voice!

All the best

Alison Conroy