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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.

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...... 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.