I have had a full larengectomy this last July. I was diagnosed with larynx cancer in April so it all happened very fast, almost too fast. There was not much talk or time to think of what comes after surgery and what options I had. I am a 67 year old widower who is very stuck in my ways. I am at my wits end with all of this although I am very thankful that I have my life and I am cancer free this has been so beyond frustrating there is a giant lack of communication with my doctors and it's a learning hospital where I had my procedure done so maybe this is why I ask ask ask and get either the run around or no where?
I have a million questions it was like I was born yesterday I have no idea what I am doing. They sent me home with a Larry tube to keep my stoma open for healing now it has been 5 months and I am assuming I should not have to wear the larry tube anymore, WRONG every time it is out my stoma tries to close the docs just put a prosthetic in 4 weeks ago and I still have yet to be able to speak because nothing works and the doctors give me the run around when I call with questions.
So I'm hoping coming to this site maybe I will get more answers than I have gotten. Thank you for listening.
Hello Donott, I remember when I had my laryngectomy in 2010 and I must admit it was all go to get it done but unlike you have had very good aftercare and still have if needed. You should not be left to fend for yourself as you should still be under the care of your team regardless if it's a learning hospital, in fact, I would have thought it to be the opposite. My stoma has never caused me any trouble so I have never had to have a larry tube in although I know others who have to wear one all the time, sometimes after a long period the stoma will stay open so maybe you could ask your consultant which bracket you fall into. I hope you can get all your larry bits on prescription, I use Countrywide Supplies and order online then they sort it out for you. You should also have a dietician checking up on your diet and weight quite regularly as well as your Speech and Language Therapist ( S.L.T). The S.L.T should by now be helping you with your speech valve as it should have settled in now, they will teach you how to use and maintain the valve as they can get a bit blocked with mucus, they can also leak and wear out so your S.L.T will do this for you. Other than that the actual use of my speech valve never came about due to damage caused by previous operations, not actually sure what the reason was now! So you should chase up your S.L.T to get things moving, I believe you have to have a swallow test to make sure nothing is leaking unless its been done already. You should not be doing all this running around as the consultant, dietitian, and S.L.T should be sending out appointment dates. I'm sorry you have been treated this way so, please get in touch with your consultant for a meeting so you can discuss all these points, the dietitian and S.L.T should also be at this meeting. I hope i have managed to help answer some of your points but please repost if you need more help or advice as I will be quite interested to hear from you. Good luck and best wishes, take care.
Chris x
Its sometimes not easy but its worth it !
