Coping

FormerMember
FormerMember
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Iam a brand new laryngetomy and. Am struggling to cope with how Iam going to meet new people and start a new life , any ideas ? 

  • Hi trev123, how long ago did you have the operation and what stage are you now i.e are you home, have you got a speech valve. If you could give me these details i should be able to help in some way as i had a laryngectomy in 2010. All the best 

                                                                      Chris 

    Its sometimes not easy but its worth it ! 

    Community Champion Badge

  • FormerMember
    FormerMember in reply to chris2012

    Hi Chris , had the op in October , and have Speach vaulve at home just finishing radiotherapy , but having trouble comming to terms with so many changes , fears about can I meet new people ,and get on with a life 

  • Hi Trev this is Hazel glad Chris has been in touch he is really a godsend in this forum am sure he can help you out. 

    I am 16 month post radiotherapy for tonsil cancer so sorry can’t help with your speech problems but always willing to lend a hand if I can’t help with  anything radiotherapy wise .

    baby steps is the way to go just take everything in small stages .

    keep in touch 

    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Hi hazel , good to hear from people that can understand , the radiotherapy  comes to an end next week , thank god , the Mask ! Drives me mad , and it's made me fill at an all time low , but I know it's comming to an end , just trying to think how to fill my days once   The treatment has finished ? Iam thinking about getting my fitness back at the gym , but can't face it at the mo , thanks 

  • Hi Trev

    best advise I can give you take itbsteafy as ince radiotherapy finishes just remember your body is full of radiation and it has to leech out slowly from your body . Exercise is good but start slowly when yiu are ready , by 8;weeks I was back on my bike only doing 10 Km and built up from there .  The mask I used to tell it every day that treatment  was going to hurt it more than me , in fact I gave it a name and now it’s hanging up in the garage great for scaring the kids at Halloween put lights in it ! 

    Any questions please ask ,  

    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Trev123, thanks for the update, well done so far as I know how difficult it can be, it's mainly building up the confidence. I was like you at this stage so its quite normal, most of the people you know i.e family, friends, workmates etc should be ok with you so I used to go and visit my place of work as they wanted to see me and watch my progress, I just used a pen and paper for communication or my phone which I installed a "text to speech "app which speaks out what you have typed in, or I just showed them what I typed. Of course, the family was no problem at all. I soon built up the courage to go shopping, get petrol, for this, I just carried a notebook in case I needed to ask them something, you will be surprised how accommodating these sort of people are and will help as much as possible. I'm a bit of a favourite when I go shopping as they have got to know me and always ask how I am getting on, so don't be to frightened to get out there and slowly integrate with the public. To this day I have never heard of a rude or degrading comment and I live in an area where you would expect it. I even take two Dachshunds out for a walk and I can control them by clicking or clapping my hands if needed, even fellow dog walkers speak to me so it's not to bad out there with the public, even been to watch Gillingham F.C play (don't laugh Slight smile).

          What you have to remember is the only thing that has changed is your loss of speech and you have to breathe through a hole (stoma) in your neck protected with a filter which takes over from your nose which is now redundant.I have met many new friends especially on Facebook etc as they also have Laryngectomy Groups on there. You will be surprised how easy making new friends becomes and life will carry on as normal, it can be a bit difficult when you are in a group as its harder to get involved as they are all speaking quickly and it can be difficult to be heard but you learn the pitfalls and adapt to them in your own way as time will show. 

        I mention all the above as I doubt if you have any dealings with the speech valve as this normally starts once the radiotherapy dies down. Once the speech and language therapist starts to see you they will be able to teach you how to use the speech valve, it's very much like you mime the words and the speech valve then produces a clear voice. This is the most common way to speak after a laryngectomy and is easiest to use . You also have the electrolarynx which is a robotic voice, its a bit like putting a vibrating razor under the chin and again mouthing the words where the vibrations will come out in speech form, this way takes a lot of practice but I have heard really excellent dialogue coming out of peoples mouths, one person I know can use a telephone using one. The third one is oesophagal speech which works on the method of swallowing /trapping wind and learning how to make words as you release the wind, a bit like burping. 

          So all is not lost just because you have no voice box its just a case of you and other people accepting it and building up the confidence to get back out in the community again. This will all come in time, I promise. I'm now 10 years since my laryngectomy and life is very good where I lead a near-normal life as I'm sure you will. I hope this as helped in some way, please come back and ask if you have further questions, I promise the answer will not be as long as this one Slight smile. Take care and best wishes.

                                                     Chris.

    Its sometimes not easy but its worth it ! 

    Community Champion Badge