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08 February 2022
This is my Journey – The Lilly Effect
My name is Alan Spinks and I wrote this with the hope that it will help other people who are about to have or have had a total laryngectomy.
As an experienced Head and Neck Nurse, I am passionate about empowering people to achieve their maximum potential.
I have worked in various roles in the health sector for over 34 years.
In 2013, I had a total laryngectomy. After a couple of years away from work to recover, I have since devoted my time to helping patients prepare for and manage their own laryngectomy journey.
However, for me it has not been plain sailing. It is important to note this as you, the reader, may not go through the same journey I did.
Prior to my surgery, I was highly active and quite a gregarious, happy, and probably the most optimistic person you would ever meet. As well as a nurse, I was a professional speaker. I would speak at conferences all over the world about how to improve patient services and make access to healthcare easier, quicker, and safer. I have represented my adoptive country on two of these occasions at international events. I have managed multi-million-dollar budgets.
In the past I have been a teacher, a lecturer, and a trainer, so you see I was a very loud person and I spoke a lot in my work and in my private life. My hobbies were rugby (when I was a little younger), I am a qualified sailor and have sailed yachts for many years in the UK and New Zealand.
In April 2012, I chaired a week-long improvement program in Perth, Australia that was attended by some of Western Australia’s hospital managers and executive teams. It was probably the most intense week I have ever had, and I spoke for hours every day. I flew home to Auckland, New Zealand in a very euphoric mood, I felt I had achieved a great deal that week.
It all began to change when I landed in Auckland. Within 2 hours of being at home, I started to have difficulty breathing so I visited my doctor. My breathing became so bad he thought I was too ill to leave the surgery for the 10-minute journey to hospital even by ambulance.
After 4 hours they managed to control my breathing enough to get me to hospital. I was admitted to a high-dependency unit and a CT scan confirmed I had acquired immediate onset bilateral pneumonia. Thankfully, after 7 days I was fit enough to go home to recuperate.
Over the next few weeks, I developed a husky voice and it seemed not to get better. The doctor I saw at my outpatient appointment said it could be the after-effects of pneumonia and I blamed the hectic week in Perth. After a few weeks, I again visited my doctor who referred me to the ENT specialist at my local hospital.
The ENT surgeon put a camera up my nose and into my throat and told me he had seen something he thought was likely to be cancer.
As you can imagine my world was turned upside down immediately after I heard the word cancer. My ENT specialist tried his best to make me feel better by saying “If you are going to get cancer then this is not a bad one to have. We can remove the cancer easily. 8 out of 10 people can be cured of this cancer through radiotherapy treatment. My response was “As long as you don’t give me a stoma, I am ok!” After the diagnosis was confirmed through a biopsy and CT scan, I embarked on a treatment plan of radiotherapy consisting of 20 sessions. This was carried out easily over a period of 4 weeks.
A follow-up appointment 6 weeks after radiotherapy showed the cancer had indeed gone. I was euphoric, finally, I could get on with my life and put all this behind me. A further follow-up 6 months later showed the cancer had come back. After a discussion with my specialist, I agreed to have endoscopic laser surgery. This is a procedure whereby they use a laser to zap away the cancer, however this would lead to a small gap in my vocal cord and may affect my voice. After the procedure, the 3-month follow-up showed no cancer. My voice was good again and I felt positive.
This was short-lived as my next follow-up showed the cancer had returned and therefore I had further Endoscopic laser surgery. This left me with a whispery voice, and I was aspirating a lot when I drank fluids. At least the cancer was gone, and I could deal with this aftermath. All through this time, I was positive that I could deal with this cancer and that this was the end of it, and I could rebuild my life.
I attended my follow-up in October 2013 to be told the cancer had come back and was now very aggressive and was tracking along a nerve. I was advised to have a total laryngectomy.
I was devastated, this was the last thing I ever wanted to happen. I remember saying to my specialist “Please don’t give me a stoma!” Questions were rushing through my head like a train: Who will look after my children? How will I be a nurse? How will I talk? How will I breathe? And the most unusual question came into my head – Can I still drink through a straw? Why I had that question rolling around my head I still do not know to this day, there were many more questions I came up with but that one stayed with me.
4 weeks after hearing the news that I would need a total laryngectomy, I was admitted to the hospital the day before the surgery, and I kept thinking I would get through this. I will adapt, mend, and get on with my life.
I have little memory of waking up after the surgery or indeed of the first 3 days after my surgery.
I remember lying in bed breathing and the only difference was I was breathing through a stoma in my neck.
When can I go home?
I don’t remember having any pain or discomfort at all. The only issue I had was that when I coughed, I coughed through the stoma in my neck. This was quickly accepted by coughing into a tissue at the stoma instead of my mouth or nose. I was simply happy to be alive and relatively well, in no pain or discomfort. I was not hungry thanks to the tube in my nose that fed me regularly. I actually thought this was not bad at all. I had no voice, but they had just removed my voice box, so I used paper and pen. In the afternoons, I would write out all the questions I wanted to ask my surgeon the next morning when he did his rounds, there was always the question – when can I go home?
I was discharged home after 9 days in the hospital. This was a great moment, at last, I could get on with life.
When I got home, I had all this equipment, a humidifier, a nebulizer, boxes and boxes of food to put in my nasogastric tube to keep me full but even though my wife was with me I felt I was all on my own.
All of a sudden, I had left the safety of the hospital with all the support I needed to be at home with just myself and my wife. I felt alone, how was I going to get through all this without all the nurses, the speech therapist, the doctors, but you do, you quickly learn to do what you must do, and I did. Slowly I got myself together and got better, day by day I felt stronger. Eventually, things settled down and the swelling around my neck reduced, and the numbness started to go.
I was still breathless on exertion, so I took it easy and did things slowly. Every day I would walk a bit further without getting so out of breath.
3 months after my surgery came the day when I was going to regain my voice. I attended the hospital with the speech therapist and my specialist. Finally, they took out the tube that was keeping me fed as well as keeping the fistula open and they placed a voice prosthesis in its place.
I remember the speech therapist saying to me “we now have to teach you to talk again” I quickly put my finger over the stoma and said quite clearly “What would you like me to say?”
My wife and I could not stop crying! Finally, I felt it was over. I had my voice back, not only back but a lot better than the whisper I had after my second laser surgery. I was so happy; words cannot express that feeling when you get your voice back after losing it for over six months.
I then threw away the bibs I was given by the hospital to cover the stoma and replaced them with something called an HME and a baseplate.
I got used to wearing the HME and baseplate to the point where I could not stand not wearing an HME at all. If the HME fell out in my sleep, I would wake up immediately and put it back into the baseplate.
As my health started to get back to a new normal, I started to socialize and think about returning to work. Thankfully, my taste for beer came back and I started to see friends in our local pub, but things seemed different. I was very conscious of the stoma and the fact that people could see it. I felt I could not be heard in busy places and slowly this got worse to the point that I would not go out at all. I had a seamstress sow clips into all my shirts so that nobody could see the stoma. I felt my personality had changed, gone was that gregarious person that would tell unfunny jokes, share experiences or just be part of a conversation, all that had gone with my voice box.
I was embarrassed to go out because I believed I looked different and not in a nice way. People would look at me differently and wonder why does he sound like he does? If my HME was visible, I would believe people looked at my stoma before they looked at me. I became very sad but not only sad, but I was also lethargic. I would avoid doing anything at all, I would just sit and read. More worryingly, I became fearful of my relationship with my wife. At the time we had been together for over 25 years, and I felt it was soon to be over, why would she stay with me when I am sad, frustrated, and grumpy all the time?
I could not even envisage going back to work. I am a nurse, and this is all I have ever done. How could I work on a ward or even with patients when I have this stoma in my neck that I breathe though. Over the first couple of years after my surgery, I ran a small business, but it was different from being a nurse. Over time I lost my nursing registration due to not working in the sector and this affected me greatly and added to the sadness I felt.
I realized I was not the person I used to be.
I remember overhearing my son and his partner talking about the imminent arrival of their first child. I remember distinctively their conversation reverted to being about me and my son’s partner said, “Do you think he will be this sad and grumpy when our baby arrives?” Hearing this drove me to despair. I did not know what to do or where to go. I realized I was not the person I used to be.
Then things changed.
It was the day Lilly was born.
I saw this beautiful little girl in my son’s arms and thought to myself I cannot be this sad grumpy person anymore. I will not allow this baby to grow up with a grumpy grandfather. I want to be part of this little person’s life and be there for her and my family.
I call this the “Lilly effect.”
It was Lilly who made me realise in life we can control certain aspects but some things we cannot. The one aspect we can control is how we deal with things. I started to work with my clinical team and really embroiled myself in my rehabilitation.
I practiced voicing. I would sit on my own and read aloud the newspaper or the book I was reading and trained my voice to be the best it could be without the vocal cords.
This is who I am.
I took out all the clips that I had sewn into my shirts as I realized this is me now. This is who I am, I am on the right side of the grass. I am alive and I will be alive for Lilly, my family and myself.
Not long after, I enrolled in a return to nursing course and got my registration back. I felt I had a lot to offer people like myself and trained to be the head and neck nurse I am now. I look back on the first 2 years after my surgery and I think what a shame.
I now live a full life; I work full time helping people who are undergoing or have gone through the same surgery. I feel honoured and humbled to be in this position.
I have taken the time to write this because everyone needs their own Lilly effect. When you are faced with the same situation, you may feel it is the end, but it is not, it is the start of your new life.
Please don’t let it absorb you, find your Lilly effect.
Having a total laryngectomy is a lifesaving surgical event.
Embrace it as you should embrace life.
Try and find your own Lilly effect earlier not 2 years after your surgery. If I knew my journey was going to end in a total laryngectomy knowing what I know now I would have had it done straight away. Life is good.