larynx cancer

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hi everyone hope that you are all keeping well. I go by the name Mr jingles because I've written afew songs about cancer for cancer support and my experience being nearly four years a laryngectomy . it seems to me that whatever our bodies go through we adapt to it after a bit of time. my first sign was a hoarse voice. I had to have a few operations to help me breathe when my cancer grew bigger but after 30 sessions of therapy my cancer was stubborn and returned so I had to have my larynx out. It's been a bit tough at times, especially on the phone but the docs and nurses have good technology to help people talk with a valve being fitted. I just want to say if anyone is going through larynx cancer and would like someone to talk to for advice or support let me know and I will help as much as I can.  looking forward to hearing from you. 

  • Hi Mr Jingles  I am in my second week in hospital having just had my larynx removed. All going well and just waiting for my swallowing test. Then food, and then hopefully a voice. Can't fault Macmillan nurses as everything they said would happen, has done so far. So no big nasty surprises. Hospital staff also fantastic. My suggestion to anyone going through the same trauma us stay positive and take each step one at a time. Tommlt

  • Hi

    Your lucky there are quite a few of us Larygectomees on here and also try the Larynx group as well, as you say it gets some getting used to but at least we have a pretty normal life, I still work and as you say telephones can be difficult at times especially if the baseplate blows half way through !

    Great to hear from you both
    Take Care

    Tony

    Community Champion Badge

    We will move mountains to help people with cancer live life as fully as they can.
    We'll do whatever it takes. For information, support or just someone to talk to,

    call 0808 808 00 00 or visit www.macmillan.org.uk

    Onwards and UpwardsWink 

    Voicebox Cancer- Laryngectomy 2020 and Oesophagus survivor 2022

    Adminitrative Assistant at Frimley Park Hospital, Cancer Support Hub

  • I'm hoping to have a velve to .but I still feel rough all the time it's been 8 months 

  • hi, steve. what anyone tells me about laryngectomy I already know.  let me just say this to you. my first year after my op was a real grower for me. in fact the worst time of my life steve. now I know how you feel and I know what you're going through. your body has gone through a major change and it is still adapting to your new way of life. in fact, it was about my 8th month I just couldn't take my new way of life anymore. I mite have felt a bit sorry for myself. but after I had my new valve I had another great meaning to my new world. when you get your valve fitted then you will know and understand that being a laryngectomy isn't all that bad steve. good luck with the new valve it will be better than talking on the phone with the vibrator tone. and people putting the phone down to you. and after the valve then you will be able to talk without touching your valve but that will be the next stage. I m still learning that one. all the best steve 55

  • hi, tommit. that took me back a bit to when I was having my swallowing test. That's right we all have to stay positive. our bodies have gone through a major change and it wouldn't be unusual to feel a bit down now and again I no all about that but the body is strong and we come to terms with our new way of life. let me know how the swallow test goes for you. it's nice for me to be in touch with other laryngectomeys. all the best to you. you should get the Vibro speaker soon. it took me a while to get used to it but you will be ok 

  • Having a valve would be great, people I've met in the flesh and in online "webinars" sound amazing, someone even sang in an online Christmas party last year. But, it's not make or break; I can't have a valve, electrolarynx won't work (lack of tissue vibration due to RT damage), tried esophageal speech and failed dismally and my quality of life is still fine. I get by, my son (who lives with me) lip reads me 95% perfectly now, so he's often able to translate. I can also make consonant sounds so a word like, as an example, "stop" I can "say" very clearly.

    Hope you get your valve but don't despair if it's not possible.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • hi, mike0. soz to hear that you can't have a valve fitted. sounds like you have a fantastic son mike. that's brill. I wish that I could help you mike all the best to you and your son 

  • Thanks, though I really am content with my situation, many go through worse, best to you and yours as well.

    Community Champion Badge

    Metastatic SCC diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014. Recurrence on larynx diagnosed July 2020 so salvage laryngectomy in September 2020.

    http://mike-o.blogspot.co.uk/

  • Thanks for your reply