Internal and external swelling 5 months after ringing the 33 day radiotherapy bell

Hi Gilpat. Welcome to the forum. There are a couple of people on this forum that have long term tracheotomies so I hope they reply to you soon. I have not had the same cancer as you as mine was jaw cancer. However I have had 2 maxillectomies over time and each time had a temporary tracheotomy. The hardest part I found was not being able to talk so had to get good at making signs and relying on pen and paper. I only had them in while in hospital unlike you. 

What do your medical team say in relation to the length of time you may need the tracheotomy?

Lyn

Hi. I did think of tagging our laryngectomees. We have two in the group who post regularly, both Community Champs but I suspect their experience may not have much bearing. I'll tag chris2012 anyway and see if he can suggest something

Good evening Gilpat, i was like Sophie to begin with temporary tracheostomy which had to stay until my surgery healed and my swallowing was ok but unfortunately i had my voice box removed two years later so mine is permanant now. Im sure once your consultant is happy with your recovery and the swelling has gone down they will alow the trachie to be closed up . It sounds to me as if its just a reaction to the radiotherapy as it can cause issues during recovery i know how uncomfortable and frustrating it is not being able to talk etc. Good luck with your continued recovery.

                                                                                 Chris 

Thanks Chris, I will just have to be patient I suppose. All the best for the future.

On another subject, have you had any experience of flying with the tracheastoma, security checks etc?

Good evening, Patrick. I have only flown short-haul to Germany and had no issues, but make sure you take some baseplates and filters (HMEs), as I found that landing caused me to change my filter a couple of times due to mucus, most likely because of the air quality. All the best.

                                            Chris 

Hi! I am similar to you—3 months post radiation for laryngeal cancer.  28 treatments with internal and external swelling.  I’ve managed to keep from getting a trach but breathing is hard when my heart rate increases—like trying to run but only being able to breathe through a straw.  I have been told this much diffuse swelling is atypical.  It also is affecting my voice.  I live in the states and have been prescribed a “flexitouch” which is a machine that you wear 30 minutes a day that manually helps with lymphatic drainage.  The insurance approval process is long and laborious and I haven’t received it yet, but I’m hoping it will help:  tactilemedical.com/.../

Hi, will get back to you, didn't know there was a dedicated larynx cancer forum, been on head and neck, lung and incurables all the time, will have a look later

Is this product promotion? Not welcome!!!!!!!!

Gilpat said:

idn't know there was a dedicated larynx cancer forum, been on head and neck,

This forum is busier than the larynx one so most patients post here 

Yikes!  This was my first post and certainly wasn’t intended as product promotion.  I am 43 years old, mother of 3 young children and just survived laryngeal cancer.  And I’m still struggling to cope with side effects. I won’t be posting any more since it’s not welcome.  Hope your journey is easier than mine has been!