Total Laryngectomy

Hi there 

I have had a total larangectomy in January 23, and another op to do flap due to issues, also radiotherapy. There are lots of support but it’s groups on face book I find and don’t find much here only lot of old things. 

The NALC website is still active 

Phil A said:

National Association of Laryngectomee Clubs does not exist any more

Are you sure? 
I’ll tag one of our community champs who is himself a laryngectomee 

 Kasvin  can you help? 

Good evening Phil A i have been a laryngectomee since 2010 and have met other people in the same situation as you. My cancer returned within a year after having my first operation with radio and chemo. It is a big operation and it takes quite a bit of time due to the work involved but to be honest, i never had any issues with the recovery and healing. The main problem is learning to accept and adapt to becoming a neck breather, i tried not to think of what was ahead and took it one day at a time so that i was not overthinking. In most cases, you will be able to have some sort of voice afterward mainly through a speech valve ( TEP) If you click on my name it will take you to my profile where i have written about what i went through. I understand your apprehension about meeting someone, please feel free to re-post if you need further advice or help. Wishing you all the best.

                                                                                                  Chris 

Hello everyone,  especially those that posted messages to me I appreciate all your comments which have been a great help. My mistake about the club it seems it's the newsletter that may be finishing. I never think of using FB though I do have an account because I use Oculus2. That's my escapism. I will get round to it eventually I'm just becoming slower at doing things now. Thank you all.

Hi, yes my mistake seems its the newsletter that may be finishing.

Hi again it seems its the newsletter that may be finishing not the organisation, sorry my mistake.

Hi Phil.

I hope you don't mind me asking but I was wondering if you'd had the surgery by now?  If you have, I really hope you're doing well and making a good recovery.

You can look at my profile if you like and it will give you an insight about my partner who had a TL last December.

I'll just add that when he was offered an opportunity, several months ago, to meet other laryngectomees, he turned it down and was adamant it was a no go.  Maybe it was scary for him as although he'd already lost the ability to speak by then due to his tracheostomy, he hadn't had the operation at that time and he may have deemed it as the last stop.  Who knows?

However, at clinic last week, his H&N team asked me if I'd liked to meet a laryngectomee and other carers.  I immediately said yes and then looked at my fella who put his thumb up and nodded.  I was so pleased that he was ready to take that step!

So, the team will set up a meet and if he still wants to do it, we'll go together.

Don't worry if you don't feel like responding as I'm fully aware of the emotional impact surgery like this can have.

Whatever you decide, take good care and I genuinely wish you all the best.

Gill xx

Hello Gill, yes I had my op on 12th March at The MRI under Mr Bowen and discharged on 31st totally confused and unsure of myself. I joined The Oldham Quiet Ones before my op and kept them updated with my situation and they were/are extremely friendly, helpful and supportive, they/we meet once a month or so at Oldham Library. Next meeting is Saturday 10th May 1-3pm, everyone is welcome. I realise that kind of group meet may be too much at this time. There is a Facebook account under The Oldham Quiet Ones, please join by just introducing yourselves. And also on WhatsApp. But I would gladly meet you and your fella which I hope would give some or even more confidence. Because I believe that's what is the main problem with coming to terms with our new way of life. Thank you for getting in touch and I hope you contact me again soon.

Hi everyone. First my apologies for not keeping this forum updated but has you can imagine I now have a totally new and different life after my operation on 12th March which I am still trying and learning how to come to terms with. I was discharged from The MRI on 31st March.With the help from The Oldham Quiet Ones, Head & Neck Specialists between The MRI, Manchester North, Fairfield Hospitals and Atos, not forgetting myself they all help and guide but I (we/you) do the hard work. The first month of recovery after the operation is the hardest and again another month after discharge is hard coming to terms with what you need to do in terms of looking after yourself. It can and is frightening when something untoward happens and you haven't a clue what to do then panic sets in. Knowledge and confidence is the trick to getting through it. Knowledge of what you now are and what you need to do with the confidence to do it and carry on with life.

Hi again Phil and thank you so much for your reply.  I was a bit worried that you might have thought I was a cheeky so-and-so as it's not me who's personally going through this life-changing ordeal!  But I honestly do understand a lot, being my bloke's 24/7 carer.

Firstly, I'd just like to tell you a massive well done!  I feel you were so brave to opt for surgery, knowing what was to come, but also a huge jump forward to starting the journey towards a different style of life.

I'm pretty excited about having this exchange as apart from my fella, and a brief chat outside hospital with another laryngectomee's wife, I haven't had the opportunity to gain real insight into any of it yet.

You nailed it about the confidence/lack of as I reckon H (that's how I'll refer to my fella now for confidentiality) was hit for six after his op.  In the early days after coming home, he changed from when he was in hospital inasmuch he stopped trying to communicate and mainly just read the papers and gawped at the telly.  Over time this has tapered off, and he's more willing to engage via his writing board and miming.  I'm becoming a good lip reader!

Have you had a TEP or been given an electrolarynx to communicate with others?  Are you managing to care for your stoma by yourself and all the other gubbins, and finally how are you dealing with neck breathing?Sorry about the third degree but I'm full of questions for all the advice I can get!  I admit I mollycoddle H and do most things for him, but he's gradually getting better with his personal care.  Do you find it fiddly with your stoma cos H does and his dexterity isn't brilliant, to say the least! 

Right, I'll give it a rest now but I really hope you're getting support as it would be challenging to do everything by yourself.

I'm glad you found a group in your area and hope it'll build your confidence.  Most folk are very kind and helpful and we've not encountered any negativity thus far.

Thank you, Phil, for indulging my endless wittering - I'm a gob on legs!

Take great care of yourself and a small tip, listen to the birds singing as it puts you in a lovely place.

Gill xx