Hello Dr Joshi. Do you know of any laryngectomees here on the website? It doesn't seem to have come up in discussion. I have found a US site called 'WebWhispers' which is mainly larygectomees but doesn't seem to have many UK members.
I would just like to discuss things with somebody. For example they are surprised there that I will bekept in hospital for at least a month when they go home after a week.
Any help grateful Regards Ishbel

The Cancer Laryngectomee Trust was formed in 1985 by a laryngectomee, Sydney Norgate, to help provide support and understanding for people who are about to have, or have had, a laryngectomy.

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Our aim is to promote and assist the relief of all people in the UK who have had a laryngectomy – This includes our FREE book ‘Laryngectomy is not a Tragedy’ by Sydney Norgate.

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Another useful site: AFTER LARYNGECTOMY

Hi Ishbel
My husband is a laryngectomee, anything you want to ask please do. The usual hospital time seems to be anything between 2 weeks and 2 months, Paul got out after 7 weeks,although that was partly because he was so weak prior to surgery. The main reason for keeping you in seems to be to make sure that you can cope with food-either eating or peg- and you can cope with looking after your stoma-which is easier than it sounds. Make sure they have paper & pen & a bell to get help by your bed,but anything you are worried about I'll do my best to answer
Jennie

DearJennie, Thank you very much for explaining about the length of time in hospital possible reasons. I think I am like your husband Paul in that my weight has gone down so hugely (who EVER thought I would hate being an eight!) and am consequently so skinny that I never look in the mirror.
Has your husband (Paul, yes?) put on weight now that he is taking on more food? The off thing is that I had my oesophagus stretched when theydide the biopsies. The good news was that my eating improved 100% but the biopsies brought the bad news about the new cancer after six years.
I won't knopw for sure until Friday what is happening exacvtly. I had my CAT head and neck and chest scans yesterday and there was a message from the hospital that consltants want to see me on Friday. They willeither say that it is go-go for the laryngectomy; or, worse in a way, that I'm not operable.
So am I trying to do the day at a time. Even hour at a time not to let the terror seize me.
It is not the operation but the loss of the voice.
But I mustn't think along these lines.. Does your husband have a glass of red wine every night as was recommended to me? It wasn't as delicious as I'd hoped as I hadn't had wine for so long that it was a bit abrasive. Wicked Baileys (which, like everyting else has to be thickened to a whipped cream consistency) was delicious, even although I just had one-tenth Baileys and the rest thick cream.
It must be freezing in Blackpool at the moment. Keep away from the prom. As if.
Look forward to speaking again. More importantly, how is Paul's morale at present?
Best regards Ishbel

Hi Ishbel
sorry its so late-just got in from work & trying to sort Paul's bag for tomorrow, he has an overnight blast of chemo & then hopefully comes home for 3 weeks with a pump attached to his arm to give him the rest of it. He's having a totally untried combination of drugs,& instead of going into his chest they go directly to his heart,also not tried very often,they're all still fighting with us,throwing everything at this b*******!!!
Right.over to you. Weight loss-He weighed 8 stone when he had his operation{ was 14}, & about two stone of the 8 was water,he was very swollen round his legs & arms.That was 6 months ago,he's now about 11 stone. His morale is amazing, after all he's been through I can't praise him enough for his bravery. He went through a really bad patch about a year ago when the tumour first came back, they were quite reluctant to do anything for a while,they weren't sure if it was possible to operate & he got really depressed, at one stage he threw a chair through the hospital window.I eventually nagged him into being more positive! When he was told he probably had 6 months,he cried for about 10 minutes, & then went back to fighting mode. He still has an occassional drink of beer,his problems are not the norm, most laryngectomees can eat more or less normally. The strange thing is they all have different things they can't eat, e.g. one man can't eat mince, one of the ladies can't eat raspberries, but it's usually just one food, everything else is ok.One address for you is the National Association of Laryngectomee Clubs,Ground Floor, 6 Rickett Street, London,SW6 1RU. They can put you in touch with local clubs, but i think i told you that the hospital will arrange for someone who's had the op to come & see you beforehand so that you can see people do get through it. Paul does occassionally get frustrated about being unable to talk, but most of the time he's ok, it just takes a bit of planning ahead. The one thing most people seem to struggle with is shopping, but our experience has been nearly always good, you do get the odd person who treats you like you're stupid, or when you write something they try to write back, but they are in the minority.Paul goes shopping on his own quite a lot, and uses buses and taxis all the time.
Well i think i've rambled on enough now, best of luck for tomorrow, remember whatever they say you will cope, we're all with you & praying for you
Jennie

Hi Ishbel, my friend Kate, had a Larry op in 1997 and went down to 5 stone, she is fit and well, runs a B&B in SW6, must be around the corner from Ricket St, I will ask her. Her speach is excellent, but cannot talk and eat at the same time, she can drink wine and do all normal things. She told me she could not swim as she would drown; she would be willing to talk to anyone on the telephone. She has been a great help to me when I was in a bad way. She always wears a scarf in a big bow infront, so you really would not know that her neck is fragile. BIG BEAR HUGS TO ALL.

Hello Garance--I am really pleased to hear abut your friend and her progress. I have been picking up lots of unusual material to make e hippyish stoma drapes. But this activity is al pre-op. I might be like a dying duck so might as well make the most of surge of nervous energy!
I would love to have a chat with her, either by telephone or e-mail if she would care
to. My e-mail is



Hello Garance,
I would love to hear from your friend in South Ken. I used to live opposite the Queen's Elm pub. It is the speech I am so passionate about but I know it isn't easy. I have all this pre-opeeratikon nervous energy and bought a pile of unusual materials today to make scarves and unusual stoma covers.
Probably after the operation I'll feel like a dead duck and won't care about silly scarves. Hope not!
Anyway my e-mail is
rosaliemacrae@aol.com

I would love to hear from her if she ever has time from running a BandB.
I hope you are managing better with your food now as you went through quite an upset tiome recently. Hugs. Ishbel

and



rosaliemacrae@aol.com

Hi Sorry have not been in touch, Kate came for Lunch today, so I will give her a call and if she is o.k. I will email you her telephone number so you could have a chat.

Big Bear Hugs

I am A Lary and have been since March 2003 any questions you have will try and help