Patient Experience
26 July, 2022
As part of his treatment for cancer of the larynx (voice box), Ken had Total Laryngectomy surgery in St James’s Hospital Dublin, and Chemo-Radiation Therapy in St Luke’s Hospital, Rathgar in 2018. Total Laryngectomy surgery involves removal of the entire larynx and creation of a permanent opening in the neck (stoma) for breathing. This surgery can be a life-saving but also life-changing procedure, involving permanent changes to speaking, breathing, swallowing. Ken worked incredibly hard alongside a specialised multidisciplinary team to adapt to a new way of life and learn new skills.
Ken now communicates using his surgically restored voice and he attends the Specialist Speech and Language Therapist at St James’s for management of his voice prosthesis. In this article, Ken gives us an insight into his personal cancer journey.
Kenneth’s Story, Head and Neck Cancer
Hi my name is Kenneth Kavanagh I’m 61. I had my laryngectomy in the last 4 years. In 2017 I was feeling low and my voice started to give me small problems, I thought nothing of it at the time until I was feeling tired and rundown, I really thought I was working too hard. While I was working the week before Christmas I hurt my knee, so I went to my family doctor to see is there something I can do to help my knee. The first thing he asked me, was how was I feeling and when I started to talk to him he knew I was not right, he ask me to start to say letters like a, b, c, when I got to the letter e I just couldn’t say it. He told me to go straight to the Eye and Ear Hospital.
From that day on my life changed. In the Eye and Ear Hospital I had a biopsy. A couple of days after I had an examination from Doctor Lennon, I will say Doctor Lennon was so clear in what was going to happen and said how serious it was and that he was confident that I was going to get through this. At that time, I thought I was finished but he made it clear to me that I could get through it and that he would do everything he could to help me get through it. When he said that to me it gave me confidence to get through what was going to happen to me.
Before I went to hospital to have my operation, the staff (the speech and language therapist) in Dr Lennon’s clinic in the Eye and Ear arranged for me to meet a man who had a laryngectomy ten years previously. It was so important to me to understand and know what was in front of me. It gave me strength to see and talk with this man. I got a shock to hear him and realise he had his Dublin accent it really helped me. Before I went to hospital for my operation again it was so helpful to know it’s only a way of life to get on with so thank you to the staff and clinic in the Eye and Ear Hospital.
My stay and my thoughts in hospital.
Firstly, I would like to thank everyone that helped me through my time in St James's Hospital most of all the staff and nurses of St Johns Ward, all of the team there are so professional and just kind and helpful.
I arrived in hospital for my laryngectomy at the end of February 2018 but it started off bad only because of the weather outside, it was the week of the really bad snow. There were problems all over the country from the snow and my operation was cancelled for a few days. I understood what was happening, the doctors let me know what was happening every day so I was told I would have my operation on the 8th of March.
The day before my operation was hard, but I will say at every chance the nurses and doctors were letting me know that I was in good hands, which helped me with everything going through my mind before operation, you cannot help but think the worst, and if I knew then what I know now, it would have been easier for me. The night before they came and talked me through the steps, on the morning of my operation I had to take and sign consent for the operation. Some people had said it’s so final when you sign the consent form. Believe me the staff and the doctors have gone through what was happening to me before any forms, so it really did not affect me I felt I just wanted to get on with it.
When I woke up in ICU I saw my daughter I was so happy to wake up I was comfortable and a bit stiff but really no pain. I spent the day in ICU, which was the 9th March 2018, also my birthday. I was 58 on that day. I was made feel so comfortable, I had a lot tubes coming out of me, it is frightening at first but the staff explained what everything was for, they were mainly for drainage and for feeding, it just looked scary at first. After that day I was brought back to St John's Ward. That’s when I felt “ok, time to get better!”.
While I was on St John's Ward, the speech therapist would come and start to teach me what I needed to learn to get my speech back. It was so important that hands on teaching on how to look after my stoma and the work I needed to do in order to have a healthy neck and keep my speech clear. The preparation for talking with a valve in your neck is very strange at first, but after spending time writing everything on a board to communicate it’s the best feeling speaking your first words. It really was then that I knew everything could and would get better.
I was on the ward for three weeks before I took my first drink test after 3 weeks on the ward. I failed it but this was due to an infection I was getting at the time. It was a bump in the road and I had to have another procedure called a Pec flap reconstruction operation. I was in hospital for 8 weeks but never did I feel I was not going to get better, thanks to all the staff in St James's Hospital and on St John's Ward. I’ve so much to thank them for.
When I passed my swallow test I was so happy. I felt good. I was starting to get stronger and getting to be at home. Then the chemotherapy and radiotherapy treatment started. I had to go to St Luke’s for treatment. This was a challenge. I found it so hard as my neck got burned inside. I then had chemo and I was just so tired and sore after it. It was hard, but it’s something I had to go through to get where I am today.
My ongoing problem is tiredness. I get tired easily and I’m not as fit as I used to be. I sometimes have to change my speech valves but if I look back and realise what I’ve gone through, I’m in a good place.
It’s not over when you’re told you have cancer of the neck or the larynx. It is just a new way of living and you have deal with things and talk. Thanks to all the help I have received in and out of hospital. As for my outpatient experience, I have nothing but gratitude to the speech therapist being at the end of a phone to help. Us laryngectomy patients have a lot to be thankful for, so thanks for all the work you do.
If I have to leave people with something - if you feel unwell, go to your doctor, seek help, because I know I left it too long to do something, when I knew myself there was something wrong. It’s an old saying, catch it early. If you have to change your lifestyle, it is a small price to pay for your Health.
P.S. get help. Believe me, I was told and I did nothing till I really needed it.
Kenneth
Ken continues to attend St James’s Hospital ENT Outpatient services, and will continue to attend the Head and Neck Cancer Outpatient Speech and Language Therapy team in St James’s Hospital for management of his voice prosthesis, and communication and swallow rehabilitation.