Hi my name is Tracy and have had my voice box removed due to throat cancer,my operation was on April this year so still pretty new I then came out of hospital to have radiotherapy which I really struggled with as I hate anything covering my face I can't have MRI cause I have panic attacks every time I go onto one of the machines. I am now at home with my partner who's had to become my carer I am really struggling having no voice to communicate with people and am finding it very lonely as I don't know anyone else in the same place as me so that's why I joined here to see if I can make some connections or friends xx ️
Good evening TRACYI, I had my Larynx removed back in 2010 and have now got used to living without a voice, it all comes with time and how you adapt to the new way of life. Have you been offered a voice valve as this is a very popular way of speaking for the Laryngectomees, the other option is an electrolarynx that is sort of like an electric razor as it in the way it is used around the chin area and as you mime the worst the vibrations give of a voice, although it can be robotic, I know one speech therapist who was brilliant using one. I never shied away from meeting people or going out to the shops, football,concerts, parties etc, I think a lot of people think it's great that i have not let this disability hold me back. It can get frustrating sometimes but there is always around it. I know where I live they hold head and neck group meetings every few months so you don't feel out of place, maybe they have one linked to your hospital.
I would certainly be willing to give you any advice and chat through my experiences, or just life in general. It must be just as hard for your partner to learn how to communicate. I also use a phone app called "Tell Me" which is a Text to Speech app so you type a word in and it speaks it. There are so many to choose from, I think the "Prologue app" is one of the best but it's very detailed and expensive, it's also aimed at schools. Sometimes I just use a notepad app, the one I'm using is called "Mammoth Notepad" so I just type what I want and show it to the person as it does not speak as I find in a crowded room it becomes too noisy for the speech app to be heard.
Please do not feel afraid about going out and meeting the public as you will find they are brilliant and will help you as much as possible, i have become a mini celeb around my town as they all know me .
I will send you a friend request where we can talk a bit more privately if you want or just carry on like this. I think it will improve for you friends wise it just takes things to click together. Wishing you all the best, take care. Thanks for posting on here.
Hi Tracy I had my voice box removed in 2008 in my late 20s I as l also hated mri felt very colostrophobic still to this day hate them I had radiotheraphy and chemo it was worse than actual surgery looking back now not sure how I got through it cleaning stoma coughing and spluttering and on nebuliser most of the time and then learning to eat again and trying to learn to talk with a speech valve but ya know what I’m a strong person an still am to this day I am now single parent of 4 lovley children you will get through this I promise you x