After The Second Cancer

This section contains things that I found during various aspests of my life during recovery. There are sections on communication, eating, people,bathing, 3 years on and the recovery

Communication

I have included in this section with a poem that I found on a website for Laryngectomy Support. I have included it because I find it very moving and sums things up exactly. It was written by someone called Sara. I've since found out she is called Sara Bowden and belongs to a group called "Shout at Cancer", a group based locally to me that is using singing to learn to project and improve the voice. A group that's not for me I'm afraid. I will start this section with the poem.

Can you hear my voice?


Can you hear my voice, It's there for everyone to hear,It may not be the usual one, not always very clear

 

Some days it's barely there at all, but frustrating as it maybe, I have to persevere you see, As I have something to say

 

It's gone, The box, the vocal chords, they took it all away


But can you me shut up! Well no, as I have something to say

 

One thing is,that I still have, opinions that's for sure, equally as important as they were before


They may not come across the same, Intonation's not always good,but I ask you to listen please, In a way I can be understood

 

So here's the thing, I know, I look and sound a different way but I'm still me, be patient please, as I always have something to say, so if I'm in mid sentence and stop, it's not by choice

 

So I'll ask you again in a different way. Can you hear my voice?

 

I was told it could take up to two years before my voice would be understood by others. They probably said this to keep my hopes up. It was actually three years.  I now that after three years my ability to speak and my confidence is better, so communication is not a realproblem. My greatest difficulty or disappointment is trying to get the majority of people to realise that although I have lost my voice I haven’t lost my sense of humour. I still enjoy having the piss taken out of me and I enjoy taking it out of others. I also get pleasure as I used to from sarcasm especially when the person on the receiving end doesn't realise I am being sarcastic.The other thing some people do not understand is. Just because my voice doesn’t work properly. It does not mean my brain is not working. Having said all that, I still get upset when I lose the ability to speak when a piece of medical equipment fails. I came up with an ideas to ease my frustrations with communication. First, I tried poetry. I was no good at it. The same with songwriting and storytelling. Everything I wrote was so miserable. I tried writing non-fiction, hence this blog about my laryngectomy. I think it's working.

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Eating

 

During my first cancer the oncologist said that if I didn't stop my weight loss, I would have to be fed artificially by a tube inserted directly into my stomach. As a result, I decided to see the nutritionist at the hospital who suggested I drink three pints of IPA a day and three pints of Complan. That would not increase my weight but I wouldn’t lose any either and it would give me the protein and calories to stay alive. told James at about that time that I needed to be able to eat again but I had no appetite. He said smoking marijuana always makes people hungry. My oncologist had already said I should smoke some joints but when I asked him if I could get it on prescription because I don't know where to get it from he said that one of my sons would know where to get some and otherwise there was no hope for me. I told James he got me one and I smoked it when Hazel went to bed. There were the side-effects, not being able to uncross my legs and forgetting how to walk but I became hungry. I made some scrambled eggs which burnt my mouth and tasted awful. So I tried a tin of soup which burnt too. Back to the drawing board!. After a couple of days I thought about babies that were being weaned. When you take a baby off the breast, it spits food out and doesn't like it but eventually their body gets used to it and they swallow the food. They start off on bland, pureed and unseasoned food and gradually progress. So I started with scrambled eggs again, this time without seasoning. It worked as I ate half of it. Then I made my own soup, with no seasoning, and that worked too. I progressed to unseasoned cottage pie, beef casserole and other such dishes. Steak was difficult at first because the gums in my toothless mouth had never chewed food. I progressed further to seasoning my food and could even eat mild curries (I used to eat really hot ones like vindaloo). Then I got my second cancer and that was another ball game.
My laryngectomy involved the removal of a piece of my gullet as well as my voice box. Also when the voice box is removed, the nerve that makes the gullet expand and contract was cut. This is part of the procedure that was explained to me. A piece of muscle was taken from my leg and made into a replacement by a plastic surgeon and joined to the existing gullet. This cannot expand either. This combination causes all sorts of problems. So the need to eat small pieces of food is necessary as a source of nourishment. The best are minced beef and soup, as well as soft vegetables like carrots, leeks and courgettes. My lack of saliva also makes it necessary to eat a small or liquid diet. Large amounts of food are also difficult to digest so I have changed the cutlery I use – a small fork stops me from shovelling too much on to it at once. The laryngectomy also included the removal of the flap that stops unwanted items entering the gullet and windpipe. The flap also acts like a valve to block the windpipe when you are eating and so stops food from entering your lungs. The new piece of gullet I had fitted gives direct access from the mouth to the gullet. No teeth means I cannot chew food small enough to enter my gullet. At this point you would think the solution would be false teeth. I have a set that I had made at great expense. But I discovered that food stuck to them due to the lack of saliva. Cold liquid caused the food to congeal. Hot liquids were a help but as a lot of the food had not been chewed sufficiently and because I had no flap it caused a blockage to my gullet. The food that stuck to my teeth then tasted bad so I am better off not wearing them when I eat. So the need for minced food or a soft vegetable is vital to maintain protein and calories. Mince is as good as it is going to get. Accepting this, I had a serious think about what I like to eat and why. I decided that it was all down to the taste. I could substitute solid meant with minced meat. So we tried it and it worked on a beef casserole recipe I use. We have also tried a soggy version of moussaka and for variation we have tried using other vegetables besides aubergine. So now I am eating healthily again. Rice for some reason is a no. By trial and error I have found out what I can and cannot eat. Bread for instance was even a no as I need a liquid to assist food to go down and bread when wet would swell in my gullet, block it and I would have to clear it. Choking is not a problem, as no air passes that way any more.
So my food intake now starts with a cereal, alternating between Shreddies and Weetabix. At around 10:30am I have a Complan milk shake. At 18:00 I have a very liquidy main meal made mostly of minced beef but occasionally I will have a homemade Chinese or curry. After years of trying and trying again I came up with the following conclusion: It doesn't matter how much I try I will never eat properly again. I have come up with a list of what I can and cannot eat or digest. 
The main problems I have now are that Hazel will say that I’ve not eaten much or hat I didn’t well today. But when she says that it’s when she has piled food on my plate and I just don't eat it all of it. When I help myself I put a little on the plate. Sometimes that means I have more than one helping. But I have only eaten as much as if it was all there at once. Frustratingly, I cannot always eat the same things. What I can swallow one day I may not be able to swallow the next. I don't know until I try. I don't eat out very often for obvious reasons, but on occasions we do, usually if we take my mother out or we are shopping. I need the disabled toilet to be on the same floor as where the food is served as I need the toilet very quickly if my gullet gets blocked. I will only eat somewhere if it serves soup. Often a roll and butter comes with the soup. I know I shouldn’t but I attempt to eat some and occasionally the bread sticks in my gullet. Then I need the toilet. As the nerve that closes the stomach off from the gullet passed through the larynx, part of it was removed with the larynx. The result is that it doesn't work. So if I bend immediately after I have eaten I am sick as the food comes up. So now I try to sit still for at least half an hour. After three years I thought I had learnt about what I can and what I can't eat but I was wrong. Mother came to stay and with her she brought me a jar of Quality Street chocolates. We went to the pictures and I forgot to buy my usual Malteasers so I took some of the chocolates. On return I developed acute indigestion. So much so, I could not eat my dinner (soggy moussaka, one of the easiest). It became so bad I was sick and went for a lie down. The next day was OK, but yet again I could not swallow the left over moussaka. The third day I had trouble going to the toilet. I realised, I had not been for a couple of days. This eventually cleared. I then thought about my digestion. What if the rising acid causes the gullet to swell and partially block? I will continue to monitor the situation. I have learnt though that I can't eat Quality Street. We have come to terms with the eating difficulties and stick to what I can eat. Sometimes we will try new things. Sometimes I am disappointed sometimes I’m not and we’ll have it again.

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People

.I have got used to people's reaction on seeing me with cancer. With the first cancer I was initially shocked. People crossed the road or turned their back on me in the pub. These things were not done to be nasty but because they did not know how to react or what to say. My appearance had changed dramatically in a few short weeks. So I was prepared but shocked on people’s reaction on meeting me after the second cancer. It varies considerably from total amazement to the shaking of the head and walking away. Then there are a lot of reactions that are between the two extremes. There is the polite person who will treat me normally and make no reaction whatsoever. It may be that they have met other laryngectomees before. They are the best. They look at me, listen and if they don’t understand they will say so. I repeat myself and if there’s still no understanding I write down what I’ve just said. Then there are the rude ones. They treat me in a very offhand manner. If they can’t comprehend they will say they didn't. Then they will ignore me and move on to the next person. People like this make me very cross and put me in a bad mood and I hate everyone. There are also the total disbelievers. They are so amazed that they don’t listen or know what to say, they just look. These people obviously have not met a lary before and didn't know that people like me existed. Some know I am different to the norm and want to know about it. I do not mind these at all and answer any questions. Others that hurt are those that think that as the voice doesn’t work properly the brain doesn't either, as related before. Then there are those who will ignore me or pretend they haven't seen me if I’m on my own, but if I’m with Hazel they will stop and talk to her. They act as if I’m not there. Sometimes they will ask "How is he then?" as if I was a small child or somebody without hearing, speech (or come to that someone who has lost all their senses).Other people treat me in varying ways. If I can’t speak for some reason, I write my request down and sometimes get a written answer back. I write back that I’m not deaf and that even if we have not been introduced it’s all right to talk. I am now used to people's reactions and try not to get cross, though not always successfully. Some people are probably rude with everybody. When I look back to before my debilitating illnesses, those that were rude were rude to everyone, from those with a disability, pram, wheelchair, shopkeepers etc. Those who are polite to me are the same to everyone as well. I was in a bad place immediately after the operation. I was conscious of my voice, therefore defensive and ready for anyone that made any comment. As I have got used to my problem and accepted that I’m different to most I deal with people as normally as I can. I get treated much better now, maybe it's because my attitude has changed so I communicate better. I am still surprised by people. Take one instance: I was in the pub, having a three-way conversation with people that understood me and my difficulties. One in particular, a man whose wife had suffered cancer and as a result has a colostomy bag fitted. For those that don't know, it's a bowl diversion. The sufferer wears a bag on the stomach and uses that to go into instead of sitting on the toilet. The bag is fitted with a base plate, similar to the one I wear. Anyway I was halfway through talking, when my plate sprung a leak and I couldn’t speak. The person concerned laughed and said "Give up talking John and write it down.’ I changed my base plate, came back and never spoke again. I was awake at 3:00 am thinking about it, unable to sleep. Children generally have no inhibitions and tell me I sound like a dalek. I reply "I am Davros. EXTERMINATE! EXTERMINATE!" They think this is great and are well at ease. Their parents however react in various ways. Some join in and some apologise. Some even take their children away scolding them and say don't talk to men like him. This hurts me a lot.

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Bathing

 

Since I had my lary I can't have a bath and swimming is almost impossible. If water enters the stoma it will go into my lungs causing coughing, a burning sensation or worse I will drown. I shower with a specially designed adaptor that fits on the base plate It’s designed in such a way that it’s like a small snorkel in reverse. As long as the plate doesn't leak, or I breathe in while I’m directly under water, I’m fine. As a result, I have no hygiene issues. By the way I’m not supposed to be on my own when I shower. That would be fine if I was a bit younger and I could find a female to shower with. I did think about getting my wife to dress in a waterproof nurse’s uniform and perform the kiss of life when needed. I have never tried it, swim. I would have to wear a specially adapted snorkel-type piece of equipment that fits over the stoma. What I can't understand is why I can't get reasonable insurance cover when I fly because I don't know of any survivors when an airliner dives into the sea. Apart from the difficulties in getting cover when I fly water is no problem.
Example
Twice now I have got under the shower forgetting to swap the HME for the shower aid. I started coughing and nearly passed out. Luckily we have a wet room so I was able to step away quite quickly. It must be what drowning is like. My lungs were burning for ages afterwards. After the first time I vowed never to do it again. Of course I did and I suppose I will do it again. At least I know what the consequences are.

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Shower Aid

3 Years On

I wasin a bad place during the first 3 years of my cancer. My attitudes with  people especially has improved immensely. I am a lot more tolerant towards people who do not know how to react to someone like me. If people do not Understand what I have said, I simply write it down for them. If they can't read because they have bad eyesight and have left their glasses at home. They have the problem not me. i walk away before I lose my temper. It's O.K. for them to walk around half blind, but not O.K. for people like me.  Looking back it's not been so bad. I've had the all clear, so now I have beaten cancer twice. When I got my first cancer in 1997 I was 47 and I didn't think I would reach 50. Then I got a different one, throat cancer. I survived that one too and in 2015 celebrated my 65th birthday. OK, maybe I can't eat and drink as well as I used to but I drank too much and my weight kept  going up. I still go to the pub. I'm quieter than I used to be but people there are getting used to me and I am speaking a bit more. I have resigned myself to never taking part in group discussions. My opinions caused many an argument anyway. Hazel and I have seen parts of the British Isles that we would not have seen otherwise. I also still have my caring wife and boys. For that I am ever grateful. Comparing my experience during the two cancers, things have definitely improved with time. Macmillan is more helpful and ready to answer any questions. The consultants keep the patient better informed on what is happening or what is going to happen. ENT has got busier. The wards have more English-speaking staff, whether nursing or outside contractors. Finally, I will say, at the time of writing that the hospital seems busier than ever and understaffed. It’s probably a result of people living longer. So the NHS has become a victim of its own success.Another thing that never ceases to amaze me is the adaptability of my wife. She accepts my eating is different but eats what I do. She seems happy with UK holidays now and always asks if I mind if she goes out. Before she goes she always says don't forget I have my phone with me and ring if you want me to come home and are you sure you will be alright. Do I mind? No of course I don't, she deserves a day out at least. I realise now that most people have never meet anyone like me and are a bit frightened as to how they should react. Life has certainly changed now. But I am thankful That the research that has been done, has enabled me to survive. My eating routine has settled to one that suits me. sometimes my wife doesn't eat the same as me but doesn't mind cooking two meals.My main problem still seems to be the Medical Practice. They seem to change receptionists so often. The new ones don't always understand me and treat me as an idiot. I personally don't think they get enough training. The website is archaic and the only reliable way to contact them is by phone. People generally can't understand everything I say. So it's me my wife and the phone on hands free. All this seems a bit of a palaver when a simple email will do.  

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The Recovery

The day after my release from hospital for the second cancer a friend called me. He had visited me in hospital a couple of times and he was the only person I saw apart from family while I was in hospital. When he visited me in hospital my only way of communicating was by writing. I was keen to use my new voice on people so I suggested we carried on at the pub. After a pint I was tired and went home. When I arrived home Hazel told me a health visitor had called, who was annoyed that I was out. She said she didn’t call on people that could leave the house. She never called again. I gradually grew stronger and started to put some sort of life together. After a few weeks I was able to give up using a walking stick. I go to the pub every day now and have plenty of holidays. If something occurs that I don't have an immediate solution to, and it is a long time before I am due to go to the clinic, I look on the net. Sometimes I find the answer via Facebook and there are a lot of sites for laryngectomees. I am a member of some of the groups. However, they are used mostly by Americans, who generally feel sorry for themselves or want you to pray for them. A big problem I find is with the medical centre I am registered with. They generally do not understand my difficulties. I used to find this frustrating and annoying but after a while I realised they are only GP's who recommend you to a specialist if you have a real problem. Apart from everyday stuff such as colds, flu, headaches and broken bones they don't seem to know much. Three years in they seem more understanding and I get everything I need. A&E doesn't seem to have a clue either when things go wrong. Addenbrookes in Cambridge was put in special measures in 2015 and now when I ring they tell me to see my GP; they used to say "Come in today".They are still in special measures in 2016. I have found the SALT team is the best place to start and if they can't help they will know where to point me. The most helpful place to go is SALT. Over the years the radiotherapy I had in 1998 continues to cause difficulties. I have developed arthritis in my neck and the specialists say it could be the result of the earlier therapy. As well as pain it restricts my sideways movement, resulting in difficulty in seeing both ways when crossing the road.

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Since I had my lary I can't have a bath and swimming is almost impossible. If water enters the stoma it will go into my lungs causing coughing, a burning sensation or worse I will drown. I shower with a specially designed adaptor that fits on the base plate It’s designed in such a way that it’s like a small snorkel in reverse. As long as the plate doesn't leak, or I breathe in while I’m directly under water, I’m fine. As a result, I have no hygiene issues. By the way I’m not supposed to be on my own when I shower. That would be fine if I was a bit younger and I could find a female to shower with. I did think about getting my wife to dress in a waterproof nurse’s uniform and perform the kiss of life when needed. I have never tried it, swim. I would have to wear a specially adapted snorkel-type piece of equipment that fits over the stoma. What I can't understand is why I can't get reasonable insurance cover when I fly because I don't know of any survivors when an airliner dives into the sea. Apart from the difficulties in getting cover when I fly water is no problem.
Example
Twice now I have got under the shower forgetting to swap the HME for the shower aid. I started coughing and nearly passed out. Luckily we have a wet room so I was able to step away quite quickly. It must be what drowning is like. My lungs were burning for ages afterwards. After the first time I vowed never to do it again. Of course I did and I suppose I will do it again. At least I know what the consequences are. 

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