Permanent Tracheostomy - Anyone?

I have ACC in my trachea which was found in the summer last year, 2021.  I've had radiotherapy, a couple of stents fitted to hold open my airway but the cancer is growing above and possibly below the stented and RT zapped area. My breathing capacity is reducing as the tumour is closing up the airway.   I'm due to see the ENT people next week as an option is to insert a plastic tube into my airway to keep it open and that will also mean a tracheostomy.  

A part of me that really wants to keep going tells me to go for it - at this point I know some of what's involved but would like to hear from anyone that has a permanent trache who can tell it like it really is. The bad, the dire and the ugly.  

Another part of me keeps saying look, life will be utterly different, speech will be difficult along with the host of 'house keeping' aspects and perhaps I should accept that this next phase of my life will come to an abrupt halt and not have the trache op.  

Thank you to anyone who'll share their experiences.

  • Hi Kj sorry to see you here. I can’t speak from personal experience but my step daughter’s partner was in a fire and had serious tracheal damage. He has a permanent trachy but with a valve that enables him to speak. He speaks up through his larynx but breathes through his trachy. I wonder if that would be possible? 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Dani

    Thanks so much for replying, none of us really wants to be on the forum do they and I hope you are staying good.  There's not that much information on the net from patients although I have found a couple of YouTube videos like this one Keeping mucus thin with a trach - YouTube link for anyone else that sees this post, she has a couple that are very good.

    I'm hoping that I'll have a speech valve and will know more next week but like most I'm not very good at the waiting bit Grimacing  Any more info you can share from your SIL's experiences would be appreciated.

    Have a great day. Cath x

  • Forgot to say great blog you have Hugging

  • Ah Cath. Thank you so much. I’ll get in touch with him to ask some questions for you 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Cath I’ve sent you a friend request can you accept please so that I can send more details 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Dani, just a quick thank you for putting me in touch with your SIL who's eased the anxiety I had ahead of my consultation and given me 5 days of a much happier life, not to mention some very helpful info!  Although it'll be what it'll be, I have everything crossed!  Cath x

  • Hi Dani, just a quick thank you for putting me in touch with your SIL who's eased the anxiety I had ahead of my consultation and given me 5 days of a much happier life, not to mention some very helpful info!  Although it'll be what it'll be, I have everything crossed!  Cath x

  • So pleased. Fingers crossed and let me know how you do 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Bless you, thats be not an easy decision to be faced with. 
    i to have ACC but of minor salivary gland. I had a temporary tracheostomy as part of my op. I didnt find it easy. I had it for a week. However, if you’re having a permanent one, once a lot of the inflammation has settled im sure you would get used it, get lots of help and there are speaking valves to be had and i also know of a lady who has a permanent hole for trache but no tube!! You will get lots of support. Would it be curative surgery? Will you need radiotherapy? Have you done your research on ACC? Ask your specialist and airway nurses lots of questions. There a guy on here called Chris who I believe has a permanent tracheostomy so im sure he will be in touch with lots of positives about this. 
    Good luck with whatever you decide to do and stick around on here for lots of support xxx

  • Elaine I’m sure Cath is having this because she needs her trachea stented  after treatment. To enable her to breathe. 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm