Permanent Tracheostomy - Anyone?

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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.

  • Apologies if I misunderstood 

  • Hi Cath, I haven’t got a stent to help with breathing however I have a stoma in my neck for breathing, you have mentioned a valve for speaking, this is what I have as my condition was cancer of the larynx so we are called Laryngectomees. I had my operation 2 years ago and it was difficult to start but life becomes quite normal, if you click on my photo/name then my journey is there.

    With the stoma and valve you will be supplied with baseplates and TPE’s which filter and keep the air you breath moisture conditioned, they also help keep germs etc out of your airway. Depending on your lungs condition the production of mucus differs from person to person, mine is quite high due to emphysema but my Doctors are now trying different medications to reduce the problem.

    I am working as you will see and whilst as I say it gets some getting used to you will hopefully speak and enjoy life again, your real support will be family and the Speech Therapists will be your go to people.

    Take care and come back if you want any further info/help  

    Tony Relaxed

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  • Don’t apologise Elaine. I didn’t mean to confuse matters either. I should be apologising for interfering 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • Sorry I've not been on earlier, just one of those busy weekends.  I'm really grateful for your comments, help and experiences, they all add a different perspective, so really, there's no need to apologise. x

  • Hi Tony

    Thanks for getting in touch with tips and offering your help, it all makes it easier to cope with what's happening.  I'll know more after meeting with the ENT people on Weds and I'm hoping that what is proposed will not only buy me more time but that life will still be good.  You've been on quite a journey, twice, and still smiling. I had to go back to your bio a second time as I didn't notice your 'cap' - you don't wear a cuff to hold it in place?

    No doubt be in touch with questions. Cath x

  • Not at all, ive tried to delete my post as i dont want to cause any undue worry but i cant x

  • Elaine you haven’t. It’s ok. Really. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi Tony

    Thanks for getting in touch with tips and offering your help, it all makes it easier to cope with what's happening.  I'll know more after meeting with the ENT people on Weds and I'm hoping that what is proposed will not only buy me more time but that life will still be good.  You've been on quite a journey, twice, and still smiling. I had to go back to your bio a second time as I didn't notice your 'cap' - you don't wear a cuff to hold it in place?

    No doubt be in touch with questions. Cath x

    Sorry Cath. I just flagged this post with my clumsy finger on the phone. So it will disappear. The mods will put it back. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi All,  I had the appointment with ENT this morning and a tracheostomy is not considered to be helpful and would likely make symptoms worse. The best analogy I can come up with is replacing a sink waste joint when there's a growing continuous blockage in the main outlet pipe. The cancer has infiltrated the base of the stent about 13mm above the carina.

    The consultant was very good in explaining everything and it was like having a second opinion on my last scan.  To be honest I struggled to see how a full length tube in my trachea would connect to the tracheostomy. 

    She is going to speak further with the thoracic team and get back to me on any more temporary interventions to keep me going a bit longer.

    Thank you all for your help and input. It made life a little less scary. Best wishes to you all for great times and good health. Cath xx

  • Hi Cath thank you for popping in with your update, hope you manage to get something that will help you. 
    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help