Four months ago I had a partial laryngectomy. At the time I was debating having a full laryngectomy and two different consultants effectively talked me out of the procedure. Four months on I am struggling with the decision I made. Here's how it went and how I thought it could have gone had my decision been different.
Had I have chosen to have a full laryngectomy I would have been eating within two to four weeks of the operation. I would have been talking within six weeks. In order to talk I would have had to had a value fitted which would need changing regularly. This procedure is done by popping in to see your local speech and language therapists and takes about 20 minutes. It is not known how often the valve needs changing but it can be as often as once a month or as seldom as once a year, everyone is different. This valve would have enable me to have had a stronger, but deeper, voice and it could have been adjusted until I got something I liked. The main disadvantage was that I would have had a stoma in my throat for the rest of my life and would have had to insert a filter each day. This procedure would have been similar to what I have been doing every morning for the last seven months while looking after my tracheostomy.
But I didn't chose the full laryngectomy because, to quote one consultant, 'there would be no going back and with a partial laryngectomy within a year it would be as if all this never happened'.
So four months into my 'intense' rehab here is the reality of the situation.
After the operation I couldn't speak for six weeks. Now I can speak my voice is very quiet and weak. I get breathless and can only talk in short sentences and for short periods of time. As I only have one vocal chord it has got inflamed and swollen, This has caused a blockage in my airway and is making it difficult to breathe. This possibility was never discussed with me when I had to make my original decision.
I often get breathless and struggle to walk any distance. I can't walk up stairs and travel at about half the speed that I did before the operation. Apparently this is because my airway is narrow, again this was not discussed with me. Apparently this could be because there is some swelling from the operation. As I mentioned earlier the operation was four months ago and when I started this there was a chance that my rehab could have been finished in three months. With that knowledge I find it difficult to imagine that there is still swelling from the operation. And if there is could someone please tell me when it is likely to go down so I can start breathing again.
I can't swallow my own spit so I have to have a receptacle with me at all time to spit into. This means I can't leave the house other than to go to the hospital or work. Retail shops tend to frown on their customers spitting as there wander around the cashmere jumpers or fresh veg. I have been very lucky that the people at work have put up with me spitting into a cup all day. Without that release I would have gone stir crazy by now.
I am carrying out swallow exercises in order to restore my swallowing function but it is hardly the 'intense' rehab I was led to expect. I have to try to swallow five teaspoons of water every two hours. It is horrible as most of it hits my lungs and leaves me coughing like a 80 year old who's smoked forty a day all her life but it is not what I would call intense.
Finally the rehab was supposed to take three to six months with no mention of it running past that. There was even talk of pushing me harder to get me through it in three months. Well four months in and my next swallow X-ray has been pushed back two weeks. Hardly any time at all you may think, but when you don't leave the house because you can't function and you have been fed via a tube for nine months, two weeks feels like a life time. It is also another sign that things aren't as good as they should be.
So was the decision to have a partial laryngectomy the right one? At the moment I doubt it but hopefully I will be proved wrong.