Hi everyone!

My name is Elaine, I have had my Tracheostomy now for 10 years, i have one because i had a very serious case of Glandular fever! I also had a peg tube but i have since had that removed.

I have been looking for a group so i can chat to other people that have a tracheostomy, but i have had trouble finding one!!

Here now and im looking forward to getting to know some of you. Oh im 25 years old!

Good afternoon Elaine,
I'm not a trachy patient, my problem was two doses of mouth cancer (one in the jaw and one in the cheek)but that's a couple of years ago now so it's history.
I can't speak with any experience about your problem but there are plenty of people on the forum who can and will.Most people will be a little older than you but that doesn't matter we are all young at heart.I'm quite a few weeks older (like 2340 weeks!)
I answered your posting to say welcome aboard its good to have you amongst us.
keep Smiling
John

Hello Elaine and WELCOME to our online family!

I've only been a member for a couple of months, but already care about these folks as if we were all in the same town. The support is phenomenal and the wisdom of people who share the struggles unique to head and neck cancer is unmatched.

Don't know a great deal about trachs (my husband's cancer was base of tongue and he did not require a trach)... but, like John said, many people on this site know all about them and can certainly help.

Soooo... Calling all trach experts on this message board!... Send a note to new member Elaine and let her know SHE IS NOT ALONE!

Glad you found this special site Elaine. We may not all experience exactly the same things or have the same issues... but we do share common fears and triumphs related to oral (head and neck) cancer with a depth of understanding that is unique and binds us all in a very wonderful way. Let us hear from you often.

From my heart,

Melanie

Hey John and Melaine,

Thank you both for welcoming me!

Im sure i will be posting alot, im never away from my PC.

Iam so glad i found this site.

Are there alot of members in this group?

Elaine.x

Elaine,

Just checked and found there are 1112 registered people from all over the world

Melanie

Wow thats a lot of people.

I have been having a look around the site and iam amzed with the amount of support this group gives!!

Elaine.x

HI Lanney and welcome.

I am amazed by your story and your obvious vivacity. To suffer a tracheostomy so young is frightening, but of course you are accustomed to it now. Tell me though you can still speak, your need for a stoma was to ventilate your lungs not as the rsult of in my case the removal of the larynx by reason of cancer but by a blockage in the windpipe due to your infection. I am inetrested because up to 16 I was myself plagued with bouts of glandular fever, manifesting itself in earache and fever and it was also as earache that my cancer was first manifest but only when that symptom was joined by hoarseness.

Another member referred to a "peg tube" this is for feeding I understand but I have never come across this before and would welcome enlightenment.

I have had a stoma now for 11 years so just a little longer than yourself. I need no articifical respiration and my stoma is covered by a mere flesh covered foam filter. I cough quite a lot and as a consequence bring up wquite a lot of mucus which makes any other form of stoma covering impracticable for me.

I have learned oesophagal speech in teh absence of my larynx and can communicater quite effectively.

I found my work mates the easiets to come to terms with my new me, of course they rarely actualy see the stoma, though they know that I am a neck breather, but my wife was very squeamish for many months and could not bear to look at my neck. OK now of course second nature, but as said above you are so young how did you find your classmates reaction when you went back to school??

This site has been an eductaion to me I did not know just how complicated conditions my peers could suffer, I have been extremely fortunate. and if you read some of my opther posts you will understand that I am a Christian and that my Faith has been a huge comfort to me over the years. Are you a believer or was any sense of Faith kncked out of you by your experience? I could not blame you if it was. But God does not intend us to suffer but when we do He is there to provide solace and support, of that I am absolutely certain. Sickness is sickness and I do not question why I should have been afflicted, why not, there are much better people than me who have succumbed to severe illness and we all die eventually it is just a question of time.

However your experience may give hope to hundreds on this site, who face diffioculty every day by reason of their own illneses, and a bright chirpy young thing like yourself is like a breath of fresh air.

Do you work?? Have you a boyfirend?? Are you married?? Have you children?? Do you find it easy to socialise in public?? How did your family react to your situation?? so many questions as I said welcome onboard it is good to have you, DWR

Hello Dancing with roses,

Thank you for your kind and thoughtful words.

I will try my best to answer all your questions, but if i do miss anything out please ask me again!

My main reason for having my trachie is that my vocal cords were paralysed with the infection i had. It also didnt help that i was on a ventilator for so long either!Because of the many op's i have had on my vocals cords, i have been left with a very husky voice, but hey i so gratefull to have it!

The infection in my neck was so fierce it also made a hole in my gullet, i sure the correct word for it is a fistula. This is why i was fed by a peg tube, a tube in my stomach and fed with milkshake like food.

My doctors were talking about removing my voicebox, so they could repair my gullet, but i decided against it.

When i returned to school, i was a completely different person. I lost half my body weight because of my illness. I went into hospital 15 stone and came out only 7 stone! I tried my hardest to fit back in with my old life but i just didnt feel normal anymore. So i took a year out to recover fully, then when i was 17 years old i moved out. I moved to a new area by myself and made brand new friends, who accepted me the way i was, because the never new the old me!

Now the faith side of things, im not a believer in anyway really. I know there is someone up there who tries to guide us in the right ways but im not sure who it is or if they are doing their job right!!lol

As for my life now, i am happy settled down with my partner and we have 2 lovely boys aged 5 and 1 year! Im very grateful to have come through what happened to me, and i try my best to stay positive but some days its hard and i struggle!

I think what gets me the most , is like yourself i need to cough alot. If im out then go into a house that has central heating on i dry out so quickly and i cough like mad. I get a bit embarrassed by it too!

I find myself a very confident person and i do socialise loads and i dont give a monkeys if people stare at me. If they are staring at me they are leaving someone else alone, thats my way of thinking anyway!!

And as for my family, i think they suffered more than me when i was ill. My parents were great , the have done loads for me and im so gratefull to them!! I have amazed my Dad by getting on with my life and not letting anything get at me!

When i feel ill i was in the middle of my exams, so unfortunately i left school with no . qualifications.I have tried to go back to college and study but i wasnt confident enough back then. So when my wee lad is older im defiantly going to go back and get some qualifications!

So thats all i can think of for now!!

Just a few quick questions for yourself, why did you have your larynx removed? How old were you at the time? Do you ever get depressed about it all??

I have loads more Q's to ask you but i can ask them later.

I feel so happy having found this site, its like im not alone anymore!!

I look forward to your reply.Elaine.x

(boy that was a long one)

Just another quick question!!

Do or can you go swimming?? I cant and i missed going, i have been trying to make or design something so i can go!

Oh and i see you are in Inverurie, close to me!

Hi Lanney, I started to reply and something went wrong so a line or two might appear that means nothing.

Anyway I find you so refreshing and I like long replies don't worry I can yap the hind legs of a donkey at times. I was 46 when diagnosed with a carcinoma of the larynx and was operated on within 3 weeks, I never thought of asking for options, if the chopise was lose my life or lose my voice it was a no brainer. I can honestly say that it has never made me depressed, 4 years previous to my canver I was diagnosed with heart disease and had to have a triple by pass and I must confess as I had to wait sixc months for the operation, I became depressed for I wondered what if i can't survive to the operation. I had several scares when I felt I was going to die. I am not frightened of dying, but during my heart problems my boys were still at school and my wife did not work and I worried about how they would cope. The stress which I believe manifested the heart problem (always there of course)resultred from being sacked and losing our home and savings, I ahd found another job at a fraction of the salary buit of course was on long term sick, so when my cancer came along I was much better placed and my death would have resulted in my family being financially secure of nothing else.

I am with you on swimming it was the only sporting activity that I enjoyed and yes you can swim, there are special classes with I presume an thing like a snorkel to use. Sadly the nearest places for me are Edinburgh and Glasgow so I have never had the enjoyment of swimming since my operation.

For our 25th Anniversary in 1997 my wife and I went for a Carribean Cruise and it was so frustrating not to be able to swim in the sea or the liner's pools.

Unfortunately my wife is now severely disabled with emphysema and her quality of life is much less than mine, that worries me and depresses her, but she cannot stop smoking which could at least help alleviate some of the symptoms. I smoked until my cancer in fact I had my last smoke on the bus to hospital for my operation, and I know of laryngectomees that still smoke, I can't understand that.

With respect to Faith then this is very personal, I have never had any doubt about God and Jesus being the Son of God and ressurrection and all that, but I do and have always had a problem with what I call the instituionalised Church. It took until I married before a Minister took the time to teach me the difference bewteen Faith and Religion that I could publically profess my Faith, the way I see it you accept God or you reject God, simple choice. If you accept HIm you will find a way to express your faith and worship Him to suit yourself as I say a very personal relationship between me and God.

Anyway that is a duiscussion for another forum and in the interim I am happy top answer any questions yoou may have. By the way my name is Alan, and there is a story behind my web name I may tell you someday. Enjoy your family you are a remarkable role model, take care, DWR

Hey Alan,

I hope you are feeling alright today, i am!! Ooooo its a lovely day and the birds are singing, what more could we ask for huh???

After reading your last reply, my goodness you have been through the mill!! Having to go through a triple bypass and then to face caner my words you had a rough time of it!

And as for you wife, wow that must be hard too! I hope you send my loving get better vibes to your wife too! I can unserstand about her smoking, i know it doesnt help her in anyway but come on it makes her happy!! I dont mean to ask out of hand but how is is she? I feel for her!


You talk about your boys too, how many and what age are your sons? I would be so lost without my boys!

Anyway a couple more questions for you,sorry!!lol

Do you have any swallowing problems?? I do i cant eat solid food!!

Do you use any kind of humidification??? I have a nebuliser but dont use it enough and dry out loads!

MAybe thats enough questions for now. I hope you are well, i am tonight i have had a few friends round and shared a few glasses of wine!

Oh and i look forward to hearing the story behide your name!!

(i hope the spelling is ok for you, the wine is going to my head,lol)

Elaine.x

Hello again Lanney,

First re spelling who am I to speak see my last reply and that is without any liquid encouragement!!!! I'll try to do better this time.

Next on swimming, the reason the baths who can cope with us are limited is that for safety they need special lifesafing kit (apsirators to suck water out of the lungs) as well as the "snorkels" so I don't suppose it comes cheap and fortunately there are not hundreds of thousands of us to make the cost viable. I have contacts and could probably find out the nearest baths to you that can cope, bearing in mind they may not be close at all. With youngsters it would be great to share that kind of time with them, I managed to spend time with my sons in the baths when they were young it was great. I have two lads one married the youngest, Stephen he will be 29 in August his wife Amanda is beautiful he is so lucky and she has become the daughter I never had they have no children yet. The eldest is Gavin 32 past March and going on 13 he will be the death of me, got his own council flat has a daughter to a failed relationship, works hard but lives on the next planet if you get my drift. Loves his daughter but the rest of us might as well not be here, until he wants something of course!!!!!! hey blood's thicker than water and he is my first born and there is that bond.....

Now your questions and the more the merrier I don't mind at all. I do not seem to have a problem with humidity luckily. I do as I said cough a lot, and get frequent infections in my chest but try to avoid antibiotics elaving the infections to run their course but normally need at least one course a year when it gets too bad. I dare say passive smoking does not help much, but Maggie my wife tries hard not to smoke too much or too close when I am at home, in fact she only permits herself to smoke in one room, it is the living room of course but if it ever got too much I could take time out: the office and public environments here in Scotland are all now smoke free which is a big help. Funny you speak of a nebuliser Maggie has one and needs to use it 3 to 4 times a day with the relevent capsules. She really is low just now so if you don't mind I will relate your experience to her and give her your best wishes I am sure it will give her food for thought.

Re eating, well Lanney I have always been a bit of a pig. I was back on solids much to the chagrin of my really nice nurses just 7 days after my op, after a week of being fed those "Milk Shakes" intraveneously through my nose I was starving and as soon as my x-rays showed I had healed and was not leaking like a rose I ordered roast chicken with all the trimmings. Sorry I am being a bit tactless here I did not have the problems you have suffered with your gullet. I find dry food like bread can occassionally get stuck but have learned to always eat with copious amounts of water/soft drinks. I would have got seriously depressed if I had had to be fed through a peg, but still one can get used to anything and I suppose I do eat more than is good for me. I am told that I am clinicly obese for my size at my heart clinic but do make an effort to keep my weight within reason around 12 -12 and 1/2 stone but probably should be at least a stone lighter.

Sounds like you had a ball with your friends last night, I presume that the hole in your gullet has healed over time but is it that, or a restriction in the diameter of your gullet/oesophagus which prevents you eating solids?? When I was in hospital another laryngectomee patient had come back because he could not swallow at all. The Surgeon "stretched" his gullet and according to my staff nurse there was no physical impediment to swallowing, but everytime he took something up to his mouth he would begin to "cowk" as we say up here - like what happens if you put your finger at the back of your tongue to induce vomiting. He was still being fed intravenously when I was discharged and refusing to attempt to eat solids or even drink! I don't know what happended to him but he was really a very sad person who would argue and be quite rude with his nurses who were only trying to give him encouragement, I got a bit angry with him a couple of times.

Hey Alan, great to hear from you again!

Im glad you dont have much of a problem swallowing. It was really hard for me when it finally hit me that i would never be able to eat again, but now its not really an issue. My last proper meal was 1995 Xmas dinner!

The main problem i cant swallow is because where the hole was in my gullet it has now narrowed so much that everything gets stuck. Sometimes its easy to move the food down with rubbing the side of my neck, but other times its stuck for days! Liquid doesnt wash it away, i just end up chocking on it!

To look at me you would never guess i couldnt eat prperly, im above my average weight about a stone over weight!! Im sure if i cut down my chocolate in take i would be a skinny wee thing! But who wants to be skinny huh!!

Awww sounds like you are very proud of your sons!Im sure they have been keeping you and your wife on your toes for many of years!

I had to laugh when you said about your wife smoking in the living room,lol!! I let people smoke in my kitchen but only if they open the window, I do have the odd puff now and again, DO NOT tell my Dad!!

So how long has your wife been diagnosed with emphysema? That must of been a tough thing to come to terms with!

I think my problem with drying out is that i dont cover my trachie, they wanted me to wear a bib like thing and keep it damp but it didnt go with my clothes. I hope this doesnt sound to horrid but i have coughed up flies, feathers, grass and loads of different things,ewwww!!

I suffer from loads of chest infections too, i do take antibiotcs most times but im now becoming wary of taking them!! I will soon be immune to them all!

How often do you see your Doctors?? I hardly see any of mine now! Its like they have forgotten about me!

I was going to Edinburgh and St Johns in Livingston but i have now been reffered to Dundee. So im hoping new doctor, maybe new ideas! They did try and streach my gullet once but they couldnt get passed the narrowed bit! They didnt want to force past it either and basicly said they wouldnt try again and my only hope was to remove my voicebox and replace the narrowed bit with a bit from my bowel. They gave me a 50/50 on it working and me pulling through the op so i decided against it!

With me my trachie keeps my stoma open, how does yours stay open?? Is it a ring or something you have to use??

And of course i dont mind if you share my story with your wife, the more the merrier!!

So have you spoke to a lot of people in here?Do you find this site useful? Im so glad i found out about it.

Well Alan i think i have waffled enough for now, so im going to have a cuppa T!

Speak soon, TC,Elaine.x

Hello Lanney,

Apologies for the delay in replying, I had a busy weekend.

Maggie was diagnosed with Emphysema back in '99 after we spent our last camping holiday in York. It was a particularly damp second week we had a rigid pole tent and had been camping regularly since '94 which is the first year after getting a dependable car having lost my company one in 86 when I was sacked with a golden handshake for telling my ultimate boss a few home truths. (Never again principles are all very well but not when they cost you your livliehood)Anyway that is another story, Maggie came home with what we thought was bronchitis and we put it down to the damp holiday, but it never got better. Eventualy she had to see the doctor who diagnosed emphysema, but to be honest she probably had it for a long time just symptom free until the holiday. She was registered disabled in 2001 after persistent appeals from her doctor to do so it is against the grain for my wife to admit she needs help and she was given high rate disability allowance. It was not until 2003 that she would use the wheelchair we had bought, but then only when we were away from Aberdeen on vacation and then again just when she felt completely exhasuted, today she cannot shop or go any distance without the chair. She feels so frustrated and not a tad frightened at her declining health.

I am surprised that you do not use some form of cover for your stoma that is naughty, it was drummed into me before I was discharged to always keep my stoma covered, I now use a flesh covered Laryngafoam(tm)filter which is light weight but loses its adhesiveness quickly when I exert and sweat say for example at dancing classes (more another time) or when gardening. I have one bib left which I do use when doing strenous activities, but hate it, it feels uncomfortable and looks appalling. The firm that manufacture the Laryngafoam are Kapitex who also maunufacture the bib. I have tried a variety of valves but due to my propensity to cough these are really not practical. I can recommend the foams. I need nothing to keep my stoma open, my surgeon did a good job, it has lost a small percentage of size since the operation but not that you would notice.

I find this site a bit of a mix, there appears to be months between some posts but I am always anxious to comfort those new to cancer and especially cancers of the larynx. Reading the posts here has really opened my eyes, I was always aware of my good fortune but when I read some of the experiences here it makes me weep, literally, I feel for their plight and the concerns expressed by their families which is why I find you so refreshing. Of course serious illness is nothing to get cheerful about but life can go on pretty much as always and this is the message I would like to put over without demeaning those whose illnesesse are acute and whose prognosis is not very good.

Well that is my lunch hour over so best get back to the job. I may have to travel to Holland tomorrow for a couple of days on contract clarification meetings on a tender we have submitted, but it should only be one night away I was in Egypt for a week in the middle of April, but try as far as possible to avoid these trips with Maggie not being well.

Take care and hear from you soon.