Are there any laryngectomees in these forums. I hae been one for about twelve years. I am trying to draw attention to the problems of telephone only contact to hospital departments and GP surgeries.it should be possible to at least arrange mobile phone text as an alternative.
I am a membe rof a number ofcancr, health inequalities and disabilities but -apart from the hearing impaired - there are no speech impaired persons joining.
Original Post
Hi LMB,

I too am a laryngectomee of 11 years standing and have been fortunate, I can still maintain my job as a Contracts Specialist. My oesophagal voice needs tuning into but I seldom have trouble making myself understood on the telephone. People I find are generally sympathetic and simply assume I am suffereing from a bout of laryngitous or other form of sore throat - Close.

I would be happy time permitting to participate in forums considering the effects of disabilities generally and ours in particular but found my local self help groups were populated with patients who were seeking predominently financial rather than lifestyle benefits, which I found personally counterproductive to coming to terms with our "afflication".

The world does not owe us anything but courtesey and consideration as for any individual but I agree with your opinion on telephony the technology exists and hospitals and Surgeries in particulatr should be cognisant not just of our difficulties but anyone with any kind of speech impediment. Normally I find that it is not prejudice just there is so much to do and unless and until the problem is highlighted to the correct level it will continue to be just overlooked.

With respect to Bill, you have been particularly unlucky, I am afraid I cannot offer any direct advice on nutrition but agree with LMB that you should be able to get speech training from your local health authority. When first diagnosed with my cancer I was simultenaously introduced to the Speech Therapist who would teach me to speak again following the surgery. She was excellent and I was discharged from her direct care within 4 months, able to use oesophagal speech, not everyone can be as lucky as me though, and over the course of the next two or three years I kept in touch with my Speech Therapist to try various devices to help my speech, in the end I discounted them all as none really improved the level of speech I had attained but each had their own particular disadvantage not least cost to the NHS, not that that was ever mooted to me as a reason for not taking advantage. The decision to give up on the additional devices was always mine, never forced upon me.

There is life after surgery Laryngectomees and we should not be put off by our handicap. The only real pleasure that I do miss is swimming, pariculary sea swimming. My only visit to the Carribean came as a treat for our Silver Wedding Anniversay two and a half years after my surgery and I looked with real envy at my fellow travellers enjoying that tropical sea.
LMB gave a presentation at a local Social Services organised communication impairment seminar at the end of last year which illustrates the problems faced by laryngectomees.
quote:

Speech Matters In Life Everyday.(S.M.I.L.E.)

Over eleven years ago my vocal chords were removed due to cancer. I soon discovered what communication impairment can mean. At first my only means of communication was an electronic device which sounded like a dalek and aroused, fear, amusement shock etc. when heard. There are many people still dependent upon this method of communication.

Communication impaired can frequently become invisible or non persons Communication is impossible with any background noise. People in general tend to be gregarious and congregate in groups, the communication impaired are so often on the outside looking in. Meetings are not, in many instances structured for to include our input. As we try to start communicating a more verbose person has spoken. We are easily abused, either by being talked down or ignored. To some potential bullies it is an opportunity to shout at someone who cannot shout back. I have been verbally abused when shopping. I have tried to reach an item said ‘excuse me’ but apparently not been understood. On the telephone we are treated with suspicion or amusement. Some people avoid us. Lack of speech is equated with a loss of mental facility.. We are not represented on decision making bodies. Life for a female communication impaired can differ from that of the male.

We are vulnerable, we cannot call for help. Laryngectomees cannot laugh or cry so emotions are blocked in. In everyday life misunderstandings etc. constantly arise with family and partners thus giving rise to all round frustration.

We lack the understanding, representation and support of those with other physical and sensory impairments. Psychological and emotional support are lacking with no real training provided for any counsellors to work with and, assist the communication impaired.

I now only breathe through a small hole in my neck . This limited breathing does effect my everyday life as it has created physical limitations, any exertions make me cough. I miss being able to tend the garden. I have swallowing difficulties so can rarely go out for a meal. I can only take self catering holidays so that I can look after my own food. Very few catering establishments provide for soft easily digestible, non spicy food. They understand the needs of Diabetics and Vegetarians but not swallowing problems. This of course effects the life style of my husband and family. Some of our grandchildren are quite wary of me. All of our four children live in different parts of the UK. I used to rely on the telephone for contact but that is difficult now. When I go anywhere I have to be near a door so that I can get out quickly if either, I start coughing or, my stoma dries up and needs attention. I therefore never go to a cinema and go only to our local theatre when a suitable seat is available.

Two years ago I nearly lost my life through the lack of understanding of needs. I could not breathe so my husband took me to A & E. I asked for, and was given, a nebuliser, it was left on and ran dry. I was discharged without any real examination of the stoma. Not A & E fault, they just do not have any training for dealing with neck breathing problems, where a patient cannot communicate. The following day I was admitted to ENT at St. Michaels, A ‘scope investigation showed I had an infection which had been bleeding and dried up, this had cut off my breathing. Several doctors and other medical staff came to assist me, a junior Doctor eventually managed to suction some of the dried blood away and thus I could breathe.

Our quality of life could be improved by education as so much of our deprivation of normal human rights is due to thoughtlessness and lack of understanding, chiefly because our real disability is unseen Very slowly we are making an impact. Disability Discrimination legislation is becoming aware of our rights to be treated in the same way as are other disabled persons.

In response to LMB's speech as abridged by Dr Joshi I have some comments the first is that I did not know that LMB was a lady, our nicknames do not easily identify gender, and for the record I am a male.

I was moved by LMB's testimony I have come across similar experiences but I have been fortunate as said previously to have good if not excellent voice, but I have heard laryngectomees whom I could not tell from normal speakers.

However I take issue with the fact that emotion is impossible to express it is certainly difficult but I laugh [frequently](if not a little comic in itself)and I cry buckets at times life is never going to be easy and there is so much pain in this world. Where emotion is difficult if not impossible to manifest is in the inflection of the voice, the rise and fall in volume and the hints of scarcism,irony pleasure or even anger. I have been mistaken to be angry or offensive when merely attempting to express an opinion when in my contract negotiations, so now make a point of stating that if I appear to shout or my voice implies that I am angry that is not the intention and that I will find means other than my voice to indicate passion should that be needed to underscore a debating point such as slapping the table or using eye contact and body language to emphasise intent.

We are a small minority and I always inform new people I meet of my handicap and make them feel comfortable by telling them they may not understand all that I say and to not feel embarassed to ask me to repeat myself several times if necessary, but never to assume they no my intention. I get angry for example when others try to finish my sentence and can understand how stammerers might feel, for a few seconds silence is not a problem in the communication exercise to the speaker but the embarassment of the listner can be multiplied by the silence.

To LMB I say keep up informing people in as many forums as possible in the general sense, but in the one to one sense try to put your audience whomsoever they may be at their ease, their embarassment will be real and most will be entirely sympathetic and not at all patronising if their concerns are addressed by the laryngectomee directly.

What I miss more than even swimming is the inability to sing, not that I was ever a crooner you understand, but as a Christian I gained a lot of spiritual strength just from singing hymns with gusto if not perfectly in tune (to my wife's shame who constantly would dig me in my ribs to turn down the volume). Miming the hymns is not the same but I am now accustomed to it and of course God knows that my praise is every bit as genuine as it ever was previously.

Chidren I find of all categories the least resistant and when I take the time to explain to them as I do my problem I am frequently asked to show my stoma. I will generally only do this once to any young audience, with a simultaneous warning never to smoke, which I find a far more effective warning than the shots of poor souls actually dying with lung cancer!!!
LMB told me:
quote:

...... one of my theories namely, most female laryngectomees have different problems from males, smaller stoma, less breathing capacity? I really cannot laugh or cry. Incidentally I lost not only my larynx but, lymph and thyroid glands, plus saliva gland damage. All following 33 radiotherapy treatments. I cannot work out the male laryngectomee, one actually plays a mouth organ!

I will tell you what started my action for understanding of laryngectomees.
  • I met Jim after his op. when I happened to be back in hospital with an infection. Jim was in his late forties. Both he and his wife were in a really traumatic state. Jim could not stay on his own or go out alone, so his wife had to become a full time carer. Having been refused benefits and having exhausted their savings two years later they had to sell their family home and moved away into a mobile home, which they bought, I was appalled to think this could happen to any person because of cancer.
  • Patrick had the op. a week after me but only survived about five years. His neighbours openly called him 'the dummy' and mocked him. He was a small elderly man , an easy target.
  • A female laryngectomee I know was treated for two years for neurosis before finally having her long term voice problem examined and cancer found. I have wondered if I would have fared better if the diagnosis and treatment had started within less than the six months it took.

Yes there is life after a laryngectomy or oral cancer but I sitll believe more understanding is needed. Those who are diagnosed early and have a straightforward laryngectomy are indeed fortunate.

Hello I am writing this on behalf of Peter my husband who has been a laryngectomy for 6 years.
He has had a total laryngectomy and has a Blom Singer valve inserted which has for the last six months been giving a lot of problems because of Regular leaks and a candida problem. He has also got Type 2 Diabetes and is on medication for that. He is also on Diflucan one week per month. He also has a strong swallow which they believe might be a contributing factor.
Are there any laryngectomees out there who have had a similar problem and could share some light on this matter. It is good to meet others who have the same problems and can share it.

Many thanks for reading this and it is with our good wishes to you all Peter & Mary
Hello Mary,

The Blom Singer Valve as you know is to give the Laryngectomee added help to produce oesophagael speech by drawing air directly into the oesophagus instead of "swallowing" air for the same purpose. I was fitted with the valve many years ago and experienced similar problems as your husband. In the end the puncture into which the valve was fitted closed from the inside out. This meant that it was difficult to fit and was re-sized a few times before the actual problem was discovered for there was no apparent reduction in the quality of my speech. The option was to get a new puncture and refit a valve but with my consulatant we agreed my speech did not really need the assistance of the valave and I simply stopped using it and the punture closed up completely very quickly.

What I am saying is that it may be more comfortble to do without the valve while the added support to the voice quality may not warrant the disadvantages your husband experiences, he should discuss the options with his consultant.

Cheers, Alan
Hello Peter & Mary

Martyn has been a laryngectomee for nearly two years, he has the same valve as yourself and it has also caused him alot of problems, mainly being with leaking.His first valve was fitted at the time of his laryngectomee operation and he was unable to speak for weeks after because of other problems and that value lasted for months.When his consultant replaced his first valve they were unable to get the new value in and they allowed the hole to close.Martyn was admitted as a day case to have a new puncture and valve inserted.Since that second value was inserted he has had nothing but problems with leaking.Martyn has found that by stopping drinking Coca Cola his leaking are virtually non existent.
Hi
Just joined, so a bit late with this information to Peter & Mary, but after my opp, I was aloud two valves to take home, which I
swap when the one I am using causes trouble, sometimes this can be as little as two weeks or as much as six, depends what Mary's been cooking cooking
Bernard

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