NAEBODY TELT ME

?Nobody told me?, is not strictly true. I'm quite sure that in the days following my laryngectomy operation, sister nurses and doctors on their rounds did their utmost to explain how different life would be. But following the trauma of such a life changing operation, I simply couldn't take it all in.

When you are in hospital you are nursed, you are cared for. People do things for you. And my experience was that they couldn't do enough for me. I was wonderfully looked after. But when you get home, you have to do it for yourself. You are your OWN carer - albeit, in most cases, helped by a concerned and perhaps anxious partner.

So what did I find out where I was released from hospital some 10 days after my operation? The first thing was evidence of good procedural liaison between the hospital and the local medical practice. The day following my release I was visited by the district nurse. The doctor arrived a day or two later. It was more than a routine visit. Doctor McC  made his way to me following a snowstorm; he had to abandon his car half-a-mile away from the house and trudge to me in his gumboots through six inches of snow!

In due course, the district nurse removed the few remaining stitches at home . I don't  suppose either the doctor or the district nurse see many laryngectomees but both were sympathetic and diligent in planning for my ongoing treatment and rehabilitation. The chemist was given a list of the items I would need to restock with every 20 to 25 days or so: base plates, filter cassettes, Peri-Prep dressing wipes, gauze swabs. The system works perfectly. I phone the pharmacy perhaps five to seven days in advance and it's all ready for collection when I need it.

Loose ?Grunge?

The first challenge is to have the confidence to clean yourself up each morning. There's always some loose mucous (?grunge?) which I cough out - actually into loo paper! Then, standing in front of the mirror, I remove yesterday's base plate and cassette and bin it. I wet a gauze swab, wring it out, then carefully wipe around the stoma (the breathing hole). Then I wipe round again with that Peri-prep skin wipe. This inevitably causes some coughing. In hospital you couldn't see how the cleaning worked because it was being done to you - now you're on your own. First there maybe some crusty deposits around the stoma. Take your tweezers or small forceps and peel that away. Then you need a powerful finely- focused torch to look in. The hole in the valve is easy to see. Take your brush, align it, then carefully inserts it. Give it a gentle turn or twist as you remove it. It will inevitably have some gunge attached which you wash away.

Although you return home with a box of necessary bits and pieces provided by the hospital to keep you going for perhaps a couple of weeks, I found that it was useful to have the Provox compact care kit. This is available from Platon Medical Ltd PO Box 2568 Eastbourne BN21 3HZ at £29.95. It contains a lightweight, flexible torch with a powerful focused beam; a dual magnifying -and -normal mirror; a specialised forceps for stoma cleaning; a brush and a plug to use if and when the valve leaks plus some oddments - a spare base- plate, cassette and skin cleaner. All this is contained in a specially designed pouch which can fit into a large handbag or be clipped to a belt. It?s practical and convenient for travel.

You soon get used to this day the cleaning operation and I find it takes no longer than shaving. My wife finds I?m in the bathroom about twice as long as I used to be - so that makes it quits! It used to be she who hogged the bathroom!

On with the base plate, smoothing out any wrinkles - there usually aren't any - in with the bung - and away you go to face a new day. You soon get used to a new regime as far as bathing is concerned. Obviously you can no longer lie down and wallow - you'd become waterlogged! You certainly don't want water in your stoma invading your air hole. I prefer to shower, first clipping on the downward facing blue plastic shower protection device.

New Experiences

What new experiences did I find as each new day arrived? In the early days there was quite a lot of mucus which needed to be coughed up. You know, there's nae justice! Non-laryngectomees can blow their noses and cough up anywhere and at any time. A lot of Edinburgh concert- goers tend to practise this art in quiet passages of music! Infuriating! Football players spit without a second thought. Indeed, I notice more and more sportsmen (but thankfully not women) at it. But the poor laryngectomee has to find a quiet corner to ?blow his throat.?I can think of three instances when I simply had to have a cough to clear my airway. One was during a meal at the golf club at Crieff Hydro Hotel. One was at Perth Theatre and the other at York Minster. What do you do? First you must establish where the loo is. At Crieff I slipped out between courses during the meal. At Perth I could wait till the interval then attend to my little problem. At York Minster, I waited for the prayers of intercession and, as everyone bowed their heads and shuffled on to their knees, I had a good blow ! Incidentally, it would be very helpful for laryngectomees if ?Rest room? designers will provide a small shelf to put things on. Balancing your bung on the cistern is fraught with unpleasant possibilities!

So keep your eyes peeled and prepare for all eventualities. Establish way you were going to go when the need arises. One of the most important physiological things I had to learn was that there are now two parallel channels in your throat. One is the food and drink channel; the other is the breathing channel - and never the twain shall meet. What are the irritations which cause coughing? Initially, it's the mucus that collects and makes its way up your air tube. I find, for example, in the morning  if I need to do some bending - say to water some plants or to check my tyre pressures ? perhaps even to tie my shoelaces, there will be a gob of mucus to dispose of. I carry man-sized tissues with me for that purpose. I never go out without stuffing some in my pockets. But the other irritation or tickle happens in the food channel. Very often laryngectomees develope a small post operative pouch at the top of the oesophagus. This tends to collect food that hasn?t been chewed and ingested thoroughly enough before swallowing and can cause one to cough. Choose your food thoroughly before you swallow! Wash it down if you have to. Always have a glass of water at the ready with your meal.

You also find that old reflex actions don't fit your present condition. For example, one evening quite soon after my return home, I had an irrepressible urge to sneeze. Automatically I grabbed a tissue to cover my nose - and my cassette shot across the room like a cork from a champagne bottle and landed in my wife's lap! It's a conditioned reflex that you need to change. Also, you will find that you want to yawn,  your mouth opens wide but no air passes through; it is actually passing through the stoma! How important it is to see the funny side. My wife and I have been convulsed with laughter at some of my performances!

In Stitches

My struggle to learn to talk again often had us in stitches! For some days after my return home, I was still having to scribble frantically to try to keep up with the conversation. Inevitably, by that time I put my pen down and pass round my written contribution, the topic had changed. Very frustrating. In hospital, my voice therapists had been very supportive and encouraging. The best bit of psychology was to introduce me to a laryngectomee of some six years' experience who spoke freely and confident. Her personality came through strongly and she had a distinctive accent. She was unique person. I knew that my boys would be needed - albeit with a much lower timbre. when at last I was able to speak, my morale was considerably boosted by more than one young lady who thought my voice sounded very sexy! So, you see, there are compensations.

Your voice therapist will want to meet with you on a regular basis during the first weeks or months, depending on your rate of progress, to monitor your developing speech technique and provide you with increasingly challenging phrase and sentence exercises. However well I learned to speak, and I'm doing pretty well, there are still things I can't do. The letter ?h? is a big problem and I nearly wet myself trying to speak on the phone to my cousins Hugh and Hillary in Holyhead!

How do you sound? How do you look? We all worry about our appearance and I suppose we are sensitive about being seen walking about with a bung in our throat or with the white bib around our necks. Thankfully there are some stylish neck covers available. (I hate calling them bibs). There are various coloured cotton Romet collars which look like the top of a sweater to be worn under an open-necked shirt or blouse and some smart designer neck covers, various designs including Paisley patterns which look like Cravats. These are available from Kapitex Healthcare Ltd, Sandbeck Way, Wetherby LS22 7GH. Tel 19375 80211. They will send, by return, a full colour illustrated catalogue. They welcome visitors too. They?re on an industrial estate just off the A 1.

How has my illness, in particular, my speech affected the responses of others to me? Once or twice, I've had a well meaning inquiry: ?Have you got a sore throat?? I don't want to embarrass such kindly people but I feel the truth needs to be told, albeit as tactfully as possible. It?s difficult to know how to phrase an answer without causing offence. I usually say something like : ?I'm fine, thanks. I had voice cancer but that's gone and I am learning to use my new voice."

Those who knew me before my operation have been, without exception, very sympathetic and concerned about my ongoing health. I have had no experience of people trying to avoid me because I am ?different? in some way or because they are embarrassed and don?t know what to say. I'm not different. I'm still me! My voice is lower - that's all! In passing, I?m amused to see how often those with whom I'm chatting raise a hand to their throat in sub- conscious imitation of my actions.

Many Hands ?

Communicating over the phone can be a struggle. I recall a complicated conversation with a girl in the D V L A office in South Wales. I simply didn't have enough hands - holding the phone with one hand, turning over bits of paper with the other, holding a pen and depressing my cassette to speak! I think that adds up to four hands! She was very patient as I explained I would need to pause while I juggled! Surely there's a case to be made for free hands technology for all laryngectomees? Not least to have both hands on the wheel to drive and talk to one?s passengers at the same time.

But, most importantly, I find I have become immediately identifiable. As soon as I open my mouth to speak over the phone, for example to the chemist to ask for a repeat prescription, before even I have given my name, they have recognized me. That really makes me feel rather special. So you learn to look after yourself, tidying up each morning. You learn to talk with an interesting new voice. You can go out smartly dressed. How much physical activity can you cope with? Obviously this varies from person to person. I can only draw on my own experience.

I had my Op in January. Four months later, in May, my wife and I and another couple had a week's holiday in a farmhouse in south-west France. I suppose I still felt a bit frail, an invalid, still recuperating after a major operation. In a garage was a mountain bike. I was encouraged by our friends to get pedalling. a mile the first day and by the end of the week I was doing up to 20 miles. The stoma works well. I don't suppose I take in quite as much air as by mouth and nose but I seem to be able to fill my lungs as well as the next person.

And you're not alone. Although voice cancer is one in a 1000 cases of cancer, there are a lot of us about. There are laryngectomy clubs throughout the United Kingdom affiliated to the National Association of Laryngectomee Clubs. Their magazine is CLAN - NALC backwoods! There?s always someone at the end of the phone at the Association's HQ in London who can give advice and perhaps point to a club near you. NALC is at Ground floor, 6 Ricketts Street London S W 6 1 R U. Tel 020 73819991.

So - fellow laryngectomees - get on, get out, get busy and enjoy your life. You cannae say "Naebody telt me". Ye didna ken?  Ye ken noo !

Clifford Hughes