My husband has recently had a total laryngectomy and also had to have his tongue removed, so is no longer able talk. He only had his op on 10th December so still early days. Just wondered if anyone else has had experience of learning how to communicate again and the frustrations and guilt of having to eat in front of him when he is only on protein shakes. As I said early days still a long way to go.
Oh Clair.
So sorry for both of you. It must be such a horrendous thing to bear.
chris2012 is on this forum and I’m sure he will be along to help soon. He can’t use a TEP so can’t speak though he has still got his tongue and is fed via a PEG.
I can remember being in the full throes of radiotherapy pain and being unable to eat while my husband tucked in to his food. I did notice but really it didn’t bother me. Husband said he felt guilty but I convinced him not to be.
I hope you both find some peace and healing
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Clair, sorry to hear of your that your husband has had to have these operations. I have had three cancers all head and neck, first was floor of the mouth with a small bit of my tongue removed followed by radio and chemotherapy, the second was lower jaw and lastly was a total laryngectomy. Most laryngectomees will be able to find another voice either by a voice valve ( TEP ) or Esophageal speech plus you can also use an electrolarynx. The use of a speech valve is the most favoured option as it is easier to use in most cases, the Esophageal speech involves swallowing wind (air) and then slowly realising it, a bit like burping,it takes a lot of practice. The electrolarynx is more of a robotic voice and takes time to learn it but i have heard a speech and language therapist using one and she sounded really good. I think the first one would be best for your husband as it does not require the use of the tongue if i remember rightly.
Unfortunately for me none of these methods worked for me due to damage done on previous operations as I had a lot of plastic surgery after the first two operations so I'm not the best example of a laryngectomee as most normally find a new voice. I tried all three and the electrolarynx worked a little bit but not good enough to communicate with. My way of communication is pen and paper or a text to speech app where I type a message and it will speak it, a bit like "lost voice guy" who won Britan got talent two years ago, I suppose sign language is another option but if no one else can do it its a bit of a waste.
My swallowing never recovered well enough after my first two surgeries so I have been using the P.E.G since 2009, thankfully I can still swallow thin liquids like tea, coffee, water etc and at a push can swallow the supplement drinks, I have Ensure Compact which I mostly syringe through my P.E.G. I found it best not to be in the same room when people eat which works ok for me and my family and has not caused any issues, I suppose it depends on each individual. My family did feel guilty, to begin with, but once I reassured them it did not matter and as time went on it all fell into place, I just take the dogs out or sit in the front room or do something in the garden etc. But as Ron said it did cause an issue with him so I just depends on the individuals
You will find as the days and weeks go by that everything starts to slot into place, you are right its early days and it's all-new so take things a day at a time as there will be good and bad days but you will as a family get there. I hope I have managed to cover a few issues for you both and shed a bit more light on the subject, please come back if you have any more questions and we will try our best to help you and your husband. I'm now happy with my new way of life going out, shopping, holidays etc, and I'm sure your husband will be. Wishing you both all the very best, take care, stay strong.
Chris x
Its sometimes not easy but its worth it !
