Throat cancer

So sorry to read you are in such a fix.

It is a huge thing to take in.

I can tell you that my first husband lived for many fruitful years after a laryngectomy and there are members here, two of them community champs like me, who are doing well. Hopefully they will pop on to offer advice. chris2012  and Kasvin 

Did your surgeons say that you would lose your whole tongue or just part of it? Because if it's only part then you will still be able to eat and speak.

Thank you for your reply.They did say I would have all of the tongue and voice box removed and that plastic surgery would also need to b carried out.

i would appreciate if you know of any groups where people have gone through the same and can offer support to my wife and self to try and come to terms with the change of life we would go through.

Thank you

Hi. I know of one laryngectomy group and there is also a group called Young tongues but you have to be under sixty to join. I can link both of those but I do t know if one that caters for both at the same time. Please do give the Macmillan support line a ring too. They may be able to point you in a direction. 

https://www.laryngectomy.org.uk/

https://www.youngtonguesglobal.com/

Hi 231160 . I’m really sorry to hear this, it is so hard on you and your wife. My husband is in a very similar situation, having recently had a pharyngolaryngectomy for hypopharyngeal cancer (upper throat/larynx area). He won’t be able to speak again as he had radiotherapy to his neck as part of his tongue cancer treatment 10 years ago. This does long-term damage to tissue, reducing healing ability, so the medical team felt it was just too risky to give him the type of speech implant that laryngectomy patients typically get. We don’t know yet whether he will be able to eat; it was already very difficult for him following the tongue cancer surgery and radiotherapy. He had half his tongue removed and reconstructed.

‘Husband is recovering, and after an anxious period of very slow healing it looks like he may be out of hospital in the next couple of weeks, hurrah! He is using text-to-speech apps to communicate very successfully, plus he has very expressive eyebrows! 

We were very grateful that he was offered the operation as the first hospital he was referred to turned him down because of the previous treatments. At that point we were looking at the 9 - 18 month horizon before certain death. So when Gloucester came through and offered to carry out the surgery husband was keen to take it, having stared the alternative in the face. It probably also helped that he had gone through major, traumatic surgery previously and rebuilt a good quality life afterwards, despite not being able to eat properly and having speech issues. We know we’ll have to work on finding a new normal and it won’t be easy, but there is fantastic, compassionate specialist support out there, not least from the Macmillan nurses.

Hang on in there. We’ll be thinking about you both.

. Good evening 231160, i know how you are feeling , i have had cancer three times, all in the lower jaw and voice box. In 2008 i had my first operation where they took a part of my tongue and the floor of my mouth. Next year, it returned, so i had to have a lower jaw reconstruction followed by removal of my voice box in 2010, so from 2008 and 2010, I was in and out of the hospital. Thankfully, the removal of my voice box was my last operation.  I cannot speak or eat solid foods and breathe through a hole in my neck ( neck stoma), and have a feeding tube (PEG/RIG) that goes straight into my stomach via a syringe. It all sounds so scary, but please don't fear, it's the end, as i learned how to adapt to my new lifestyle and live a very comfortable lifestyle, still going on holidays abroad, shopping, driving, etc, to me its just a normal lifestyle. Try taking things a day at a time, dealing with any issues as they come, as we all have good and bad days. You will be surprised how well we recover from these sorts of operations, although we all recover differently. I can still swallow thin liquids, it just takes a bit longer. Some people can speak by the use of a speech valve or an electro larynx, which your speech therapist will explain to you. Due to damage from previous operations, the speech valve and electro-larynx would not work, so I just use a text-to-speech App and notebook on my phone to communicate, but most of my family have just gotten used to my hand gestures, etc. Please do not feel as if it's the end, as there are still things to look forward to and life to enjoy. I will try and answer any issues, worries, or concerns you or your family have. Stay strong, take care, and all the best. If you click on my name, it will take you to my profile, where i have written a brief story about my cancers.

                                                                   Chris 

Thanks Dani x