my name is liz and i am posting this on behanf of my husband brian as he has just joined and doesn't feel confident ebeough to post on the site yet.
he had a laryngectomy 2 weeks ago, and has been fitted with a stoma voice box, and only got home on friday. he told me this morning that he is afraid to go out and face the world but does not quite know why. i don't know if he is feeling bad about the stigma, or of getting in a pickle operiting the voice box under pressure. but he says he doesn't have the confidence to go out in public.
another problem he is finding is a technical one ... the baseplate. he says it is not sticking very well, and keeps coming loose from the skin when he tries to speak. often when he tries to talk to me, all i hear is the sound of a rush of air. this panicks him too.
his name is brian.

Adjusting to the new way of life is not an easy thing to do, especially if you have become disfigured or lost your ability to speak. That is similar to taking away one major component of your whole being.

I do not have a stoma voice box so Im sorry I cant give you any technical advice on that but I can help with his new shyness.

Its very normal to have the fears you mentioned. Many survivors will seek out professional therapists or even psychologists to help them learn to adjust to their new normal. Many will take (sometimes temporary) anxiety meds (even the caregivers). He has been thru the war and made it back which is no small feat. One thing he needs to drill into his head is that no matter what happens, he is still the same person inside. It took me quite a while and to adjust to my new way of life, so I know he can too. I was hideously disfigured from oral cancer. Even while I was stuck in the hospital for 2 months I began to tell myself "you are still you, nobody can take that away". I suggest giving him time by starting to do very small trips. Maybe take a walk around the block, go to a movie or a quick trip to the grocery store. These things have little interaction with others so he probably wouldnt have to speak at all. Slowly build him up to going out to more interactive things.

Best wishes!


PS... Next to the My Stuff tab you should see a flashing envelope. I sent you a private message (PM) with some helpful tips.

Hi Liz,

My husband Reggie has had a permanent stoma since Feb 2010. He too had to build confidence when he first started to speak with his new voice. It will take time. You must encourage him. I was lucky. Reggie's voice sounds very close to the way he did before the laryngectomy.He still has problems with his baseplate because his stoma is so deep in his throat. Not flat along the neck like most. You have to try different sizes or shapes until he finds one that is a good fit. Also the skin must be well prepped for the baseplate and he shouldn't talk for about 30 minutes after placing it to get a good seal. If you need me to go into great detail about what my husband does to prepare his skin for placement, please feel free to e-mail me. Good Luck!

Hi Liz

It sounds like his fear of the unknown is greater than the actuality. So human

Maybe small steps. People who care to come visit. Once he has a successful visit and has managed any issues, he will gain confidence. Next step might be with a friend to the local shop. Eventually, he will realise that most people will work with him, small children who stare is what small children do, and some people have no idea and should be ignored/crossed off the Xmas list/pitied (and one day maybe even laughed about).

Is there a support group that he can meet face to face which may help him define his fears through their own experiences? Once he knows what they are, he will be better able to find the answers to manage them.

I have a weird fear of trains in foreign countries, so I go first with someone who has no such fear. This turns my fear of the unknown to mere discomfort, so I can go on my own. I am resigned that this fear will never go away, but equally determined this will not limit my exploration and enjoyment of new places.

I don't mean to trivialise what your husband is dealing with just trying to point out that fear is our greatest limiter and we can succumb to it, or build in safeguards which will allow us to conquer it (or at least manage it).

Hi Brian and Liz! Welcome aboard this crazy thing we call Oral Cancer Survivorship!

It took quite a while to get back out in public again after paying the cost of living, which can be very difficult for men, as don't let us fool anyone by our oft unkept looking appearance (we do that to try and look rugged). We are just as vain and self conscience as our female counterparts.

I spent more time in front of a mirror than all of my girl friends, and they'll tell you that too. I didn't for a while, now I've resumed my routine of making sure my hair is perfect before going anywhere. I think that stems from being subjected to countless reruns of Happy Days as a child, but I digress.



Eric