Any help or advice for layrangectomy patient.

Hi,

Im new here so hope this is the right place to be? My Dad had a laryngectomy and alot of his tongur removed in November 09 and is currently still in hospital but its looking as though he will be home fairly soon.

I am now in the process of trying to find things to make his life easier for him when he is at home. The main thing is some sort of device where he can contact someone and get help if he is on his own as obviuosly he has no voice and so therefore cannot call someone on the phone etc. Im trying to think of other things he will need to make things as simple as possible for him.

I wonder if anyone on here has similar experiences and would know of anything or anywhere that will help.

Many thanks

 

  • Hello

    When my husband was too unwell with tongue cancer to speak loudly to get attention, we went to Argos to buy a cordless doorbell system which allowed him to ring for me inside the house.  I had two receivers, one mobile and one plug in, and he had the 'doorbell' part to press a button for attention.

    There are emergency call systems for older or frail people which can be used to contact external response centres.  Social services will have details of such community alarms, as they may vary according to your locality - so contact your local council to start with.  They may be able to give you further advice on local sources of support eg carers organisations.

    Good luck.  If you want any more help - just post here.  I am a freelance health writer, and have just been doing a proof-reading job on a book for people severely disabled with ME, and a lot of the information in that is relevant to people who have had cancer.

    Cathy XXX

     

     

  • Hi Cathy.

    Thankyou for answering my post, i will definately have a look in Argos for the bell system you suggest it sounds ideal. I will also contact the council regarding the emergency alarm as social services hasnt been much help so far.

    Its funny you should mention ME, I have suffered with the disease for a few years, not so much now thankfully but have suffered severely in the past.

    Lianne x

  • Hello Lianne

    It's a small world eh?  I am very pleased indeed to hear that your ME has improved; as a freelance health writer I have done quite a lot of work for Action for ME and the ME Association.  I really enjoy the subject matter as it's quite challenging and complex.

    Social services should be able to give you advice and information, even if you do not qualify for the provision of any services directly.

    I wish you well and do keep in touch if you like.  I am here for the long haul (husband is about to begin 7 weeks of radiotherapy, and then of course will be followed up for 5 years).

    Cathy XXX

  • Information on Laryngectomy . E-mail info@cancerlt.org www.cancerlt.org and a book entitled Laryngectomy is Not A Tragedy . I hope you find it helpful . Regards Jonnie.
  • Hi Cathy,

    Sorry it has taken so long for me to reply. With regards to the M.E, if you have any tips or advice as you seem very knowledgeable on the subject, I would love to hear it. Or any questions I can help you with, as I have first hand experience.

     

    I am guessing your husband has started the radiothrapy now? I hope your he is doing well, My Dad had a course of that a few years ago and I think people think its the easy option in comparison to Chemo but it is also very taxing on the body. I wish you and your husband well and do keep in touch.

    Lianne x x

  • Hi Jonnie,

     

    I requested a copy of the book as you suggested and it arrived a couple of days ago. I have passed it on to my Dad who was most grateful.

    Thankyou

    Lianne x x

  • Dear Lianne, don't worry about not replying straight away.  M.E. is a complex confusing illness, and I try to stand back and watch the debate about causes and treatments rage around me (occasionally I get caught in the cross-fire)!  So I'd never be 'foolhardy' enough to offer other people advice, other than to say that Action for ME and the ME Association's medical advisers seem to talk a lot of good, scientific sense, and I pay close attention to their opinions.  Plus a recent book that I helped to review for AfME, called 'Fighting Fatigue', had some sensible tips on symptom management.  It's co-written by a consultant occupational therapist and a patient - quite a good combination.  I don't myself have M.E., though I have a problem with chronic fatigue; I count myself lucky that I don't suffer from severe chronic pain problems or terrible sleep disruption like some of my M.E . friends do.

    Sorry that was rather long-winded, but yes hubby has begun radiotherapy - 4 sessions down and only 26 to go (gulp).  It is pretty taxing like you say, and we are in the early days of side-effects.  It may be less debilitating than Chemo overall, but you are right, it's not easy peasy especially when your salivary glands are going to be damaged permanently.

    You take care and thanks for your lovely message.  Cathy XXX

  • Hi All M.E. Now theres a biggy ! My daughter has been diagnosed with ME for a few years now , so one thing we can be sure of is that it is a illness , not in the mind as some would have you believe ! Its not something like a broken leg which is quite evident , and you can see it. ME is an illness that you cannot see visibley , only the effects of it are visible , No its not in your head as some say , and there is one way to prove that is true . When you are not feeling to good try and get up and do some jobs , if you cannot phyisically do them then you know that its not in your mind . No your not imagineing it , you physically can't do it . But if you lay on the settee saying oh I cant do this , thats where the danger sets in, you start to convince yourself that you cant do anything , then you won't be able to do them because you have already convinced yourself you cannot do it ! So my advice is, on a good day give it a go on a bad day then rest up. This simple advice has helped my daughter , now I am not saying this advice is a cure all thing . But it has helped my daughter cope and to realise that she does have an illness and it is not all in the mind . By the way she is also under the hospital in Gorleston , The James Pagent Hopital who diagnosed her .
  • Sound advice indeed Jonnie.  I wish your daughter well.  It's a frustrating illness, not least because some people do not take it seriously, and do not acknowledge the physical impact.  Good management is the key - and it sounds as though your family has this figured.  Best wishes to you both.  Cathy XXX. 

  • I am new.  I am not from any part of UK.   I just saw "Any help or advice for laryngectomy patient." while searching for other information.  There is not a lot of advice available for someone who has had a Laryngectomy plus other procedures.  I had total laryngectomy and glossectomy.  When I went home from the hospital I was like a frightened little puppy. No idea what to do or who to ask. Doctors told me nothing of what to expect or what I needed to do to care for my self. That was 2 years ago and still I search for several hours on at least 4 days a week. There is not a lot of information to be found, only people who want to sell you something at a very high cost. Please feel free to ask me any question you like. I will share any information I have. You were interested in a way to call someone?  As long as you have a computer you can call anyone you want.  You can very easily make your computer talk.  I have had to do it twice.  You can type a message on the computer (turn up speaker volume) then pick up phone as to make a normal call. When your desired party answers you push 1 button and your computer will speak your message.

    There is a very simple program available to make your computer speak. It is completely free no ads no commercials of any type.

    There are a lot of expensive text to speech programs out there but you don't need them.  I have tried many and have not found one to be worth the cost.

    This address will take you to it. You should only see 1/2 page with 4 files. http://www.msdlg.com/sw101

    If Macmillan will not post the address send me a request.  No matter what cancer you have you need to ask questions. It is difficult to ask a stranger personal questions but sometimes you have to. Most people with cancer are willing to help if they can.  The only bad questions are those you fail to ask.

    Take Care I wish You All The Best Of Luck

  • Hi George,Thankyou very much for answering my post and allowing me the chance to ask you some questions. You say you are not from the UK, where are you from?

    It isn't me who has had the laryngectomy, but my Dad. I am trying to find any information and help for him as he was in hospital for a fairly long time and was unable to do it himself and also has never used a computer in his life! As you say though I have found it very difficult to find any information to help him so far and you are the first person I have 'met' that has had the same procedure as my Dad.  

    He had to have the muscles from both sides of his chest moved up into his throat and had the bac part and the front part of his tongue removed, the back part was replaced with some skin from his stomach and a nerve from his arm was used as a reflex for swallowing. He only had the operation done 3 months ago and because of having radiotherapy on his throat before, his neck is taking along time to heal so they have not yet been able to check if he will be able to swallow or not. They have said that he will never eat again or be able to speak but he may be able to drink. Is this the case with you?

    Also, he has suffered with alot of mucus coming from his tube and they didnt put his laryngectomy tube in for a long time because of all the seceretions. They said when he came home this would not be a problem but he still gets very bad secretions and still needs suction some days. He also doesnt know what to do with his saliva, because he cant swallow or push it to the back of his mouth it just falls out of his mouth. How did you cope with this?

    Were there any mile stones that you can remember along your recovery? Whilst in hospital there was a few times were my Dad said he felt like he had 'turned a corner' but since coming home he seems to be feeling worse and worse, was there a time where everything seemed to improve?

    If there is any other information that you think would help or you would just like to share, I would be grateful to hear it all as it will all help.

    Many thanks Lianne

  • Hi Lianne,

    I will reply in 2 parts because there is a lot to say. If I do not address something ask again. My short term memory and some thought process do not seem to be what they should be. (Too much medication??)

    I am in the United States. The cancer or surgery your father and I have had may appear the same but cancer and the treatments affect everyone differently. What works for me may do nothing for him. Medications that help me could be hazardous to his health. What will help him most will often be found by a process of trial and error.

    My hospital stay was only 6 days. I normally heal very fast. I was in excellent physical health when I went into surgery. I do not believe my first radiation treatments slowed the healing process.  There was 10 years between radiation and surgery. After surgery I waited 3 months before starting chemo and radiation. The surgeon suggested waiting 6 weeks but I had issues that caused delay. That delay gave me more healing time between surgery and treatment. All doctors say I went through treatment remarkably well. I'm not sure I agree with that but I'm on the receiving end of treatment. Your father's time for healing will continue for a long time. I do not really know where to start or stop with healing.  After surgery there may be pain but  for a while you are happy. Surgery is over and you are going to get better.  For a couple of months you are busy there is a lot of new activity in learning to care for your self.  After a few months I was getting worse but it was not sick or cancer it was mental attitude changing. You now have to face a new reality. Perhaps it is like being in shock. You start to develop your new daily routine and since you are not working there is a lot of time for Idle thought. This can lead to depression and anger for a variety of issues you cannot begin to understand. Every bodily function he has was changed by surgery. If he liked to drink beer or smoke this time is even more difficult. He cannot breath, he cannot eat, he cannot drink, he cannot lay on a bed without pain and problems, he cannot bend over to tie a shoe lace or pick something up without problems, there is nothing he can do in the bathroom without problems. All these major changes are like being locked in a cage and tormented daily without any hope of a life worth living. Since you are trying to help him he will make life difficult for you. This is also about the time many people with cancer start to experience financial problems.  He may be having more pain and swelling in the mouth and jaws. This for me is a problem that has had little improvement. It started about 3 months after surgery. Neck dissection leaves lifetime problems with pain and swelling. Fluid that once filled the lymph nodes now has no place to go. It is the cause of pain, swelling and carries an on going risk of infections in the neck and mouth. Milestones for improvement after surgery are something I have not had. Healing is a very long process. It seems like every time some little part stops hurting a new pain starts someplace else. The underside of the jaws from the chin to the neck was very hard after surgery and has not changed much. I am now over 2 years beyond surgery. I have 2 problems that have never changed or shown any improvement. Although I have no tongue it hurts. It feels like I bit my tongue. My neck feels like there is a lot of pressure. It is like having a strap around the neck that is being pulled upward. Everyone is different but I would believe you will not see much improvement until about 6 months after surgery. I am hoping your health care providers can do more than mine have. For about 30 days after surgery I had many doctor visits. However there has been nothing to deal with neck pain or muscle problems. After 2 years of "I don't know" and "Lets wait and see" I quit going to see the doctor. I need to find someone who at least has a larger vocabulary.

    After surgery I could not drink.  It was like trying to get a baby to drink from a cup. You pour it in and it falls out. It took 6 months to get to where I could begin to drink. There is no air intake to assist in drinking. It is a long learning process.  When you breath there is a normal expansion and contraction of the stomach. He will have to practice and learn to use this to draw air in to drink. For me taking a drink is like taking a slow deep breath. To start with you need cups with a very thin rim. Thick glass like coffee mugs will not work. I still have problems with the average coffee cup. After about 18 months I got to where I could take small sips from a straw.  The only suggestion I got from the medical staff for eating was a feeding tube. I never had one put in. During surgery they put a tube in my nose. I had to use a catheter tip syringe to push liquid food through the tube. The tube came out after two weeks. Since then I have used the same syringes to eat. I tip my head back what little I can  and squirt it down my throat. I slowly began to experiment with putting food in a blender and mixing with milk or water. Anything like a pudding or applesauce is too thick. It will not go down. If I try to swallow it can get pushed up into the nasal passages. If you try to swallow something too thick and air comes up at the same time it makes a mess.  One of my early experiments was with Chili. It was a little too thick. I tried to swallow just as air came up and I had chili dripping from my nose. Trust me on this; chili seasoning in your nose is not good.  I do not know how much of his tongue was actually removed. If the base of the tongue is gone swallowing should not be possible. Swallowing is a combination of 3 separate movements.  The roof of the mouth or soft pallet moves down ward, the back of the throat moves forward, and then the base of the tongue will trap food against the back of the throat and squeeze downward. When the base of the tongue is gone and you attempt to swallow the throat will close and push everything up.

    I will get into the secretions tomorrow. That is a lot to deal with. There are a variety of laryngectomy tubes. I have been unable to determine any rhyme or reason for different types. Mine was a soft rubber tube. It was only in place for 5 days. Doctor said it was not necessary unless the opening started to get smaller. They call it a stoma but to me its' a hole in my neck. I seem to have a difficult time referring to it as anything other than a hole in my neck.  They told you the need for the suction and mucus would not be a problem? It is a problem. My doctor told me nothing. I should be able to give you a better idea of what to expect with these problems tomorrow.

    George

  • Lianne

    Mucus and saliva are difficult to deal with. I have never found any information for dealing with secretions of any type.  After radiation I had very little saliva. Dry mouth was a constant problem. After surgery excessive saliva was, I believe, the same as your father has now. Any slight movement of the lips and it leaks out. There is no way to stop it. When it starts, you attempt to wipe it away but it just continues to come out. Similar to pulling a length of very slimy string from your mouth. The only comment I found on this came from a speech pathologist who said many new laryngectomy patients have the same problem. Using suction seems to be the only effective way to deal with it. Somewhere between 3 and 6 months excessive saliva became less of an issue. Saliva is still an issue. I have learned to deal with it or live with it. ???  I have learned to draw in small amounts of air. I use this continuously all day as a way to swallow the saliva.

              My speech pathologist also said she has learned never to sit directly in front of laryngectomy patients. New laryngectomy people have sudden uncontrollable coughs. The mucus sprays out with little or no warning. The mucus will not go away. The mucus is what everyone has. You swallow it without knowing it is there. I have never seen or heard any advice for dealing with this.  At first the only way to deal with mucus seemed to be with suction. I did not go anywhere or do anything. I began to feel like I was tied to a vacuum pump. After about 6 months I was in a position where I could feel the mucus coming up. The sudden uncontrollable cough was gone. I decided the suction had to go. It became a matter of learning how to deal with it. Now the mucus is like needing to blow your nose. Grab a couple of tissues cover the opening and blow.  The only issue with mucus now is that some will periodically come out and run down the chest unnoticed. The area around the opening has no feeling. Both of you may have noticed that when the mucus has dried it becomes extremely hard. Pulling it off can remove skin and hair. A Q-tip and hydrogen peroxide will quickly soften and remove it. Just do not get it inside.

              Are you having problems with mucus becoming stuck and building up inside the opening?

              Does he use foam filters to cover the hole?

              During the first few months the nose was also a problem. Other than trying a nasal syringe I have no suggestion. Keep a handkerchief or tissues nearby at all times. While I have learned to take in and blow out small amounts of air, it is not enough to help with the nose.

              You and your father see the problems around the head and neck but there are other issues you do not see. He my not tell you about other problems. There are dietary problems that neither of you may be aware of. I had one that lasted for more than year. Nothing was done because I did not know anything about it. I have searched for information but only find brief references to bits of information that do not tell me what to do or what is healthy. Perhaps your health care people have given you some insight. Your father now has a permanent liquid diet. The liquid diet causes digestion problems. Since everything is a liquid, food will not stay in the stomach long enough to be mixed with the normal stomach acid that is necessary for proper digestion of food. You can put in food loaded with necessary vitamins, food stuff your body is use to having, but can your digestive system extract from the liquid what your body needs? Your father has probably eaten the same basic foods for more than 30 years with little to no change. Liquid food for tube feeding in the UK may have different names or manufactures but it is still a can or plastic container filled with a substance that is like a baby formula. Water a trace of milk some corn syrup and a lot of chemicals. Everyone is different they do not work for everyone.  I had bowel problems or constipation so bad it was more like a bowel obstruction. I thought it was caused by surgery. No one said anything or had any ideas. (My surgery was in December 07.  Radiation March till May 08. Chemo March till September 08.)  In January I really wanted some coffee. I was determined to find something I could still enjoy. I could not drink so I put coffee in a syringe like everything else.  As soon as it entered my mouth it was like a very smelly old ashtray.  I tried some tea. Not bad, warm and it tasted like tea. During treatments I heated the liquid feed and it was tasting fairly good. Shortly after treatments the liquid feed took on a horrible taste. Coffee was beginning to taste good again. I was mixing food with the liquid feed. That was not bad but not desirable. Then a few months ago, nearly 2 years after surgery, a year after treatment the taste of food took on a drastic change. All liquid feed had to go. The foods I had been using had to change. No more bowel problem! The liquid enteral formula was causing the problem. My diet is now 60% potatoes about 20% oatmeal occasionally some beef stew or a chicken dish. Physically I am healthy. Yard work or any physical labor is a long process. About every 45 minutes I have to go back in the house because my nose is dripping or the hole in my neck is dripping or stomach contents are in my mouth because I bent over too far.  A days worth of yard work is now a 3 day project but I can do it. I can now do 100% of anything I want to do I just have to deal with all the drips.

    George

  • Hi,

    I just had a thought I did not even consider for myself. Sports Bottles! A plastic container fitted with a straw. Just squeeze. I have seen them used by football players and other athleats. May be something to try.

    Because there are differences in culture and medical practices I have stayed away from Cancer posts in the UK and Australia. I have to be careful in what I say. I do not want to offend people or be misleading.  I would say never try anything before you ask the doctor. I went back and read your reply again. It says  "They have said that he will never eat again "  That is not right. When a doctor says he will not eat again it only means he cannot chew or swallow. If there is enough room to pour water down your throat you can eat. A lot of men or women at the age of 50 are bullheaded and will say they do not need anyone telling them how to eat. With a few suggestions and your own testing you can learn a new way to eat. I now use fewer cooking utinsels, need less dishes and eat in less time. I have no need or desire to have a feeding tube.

    This is an example of a snack for me.     A  potatoe, baked boiled fried or microwaved,  about twice the size of an egg and 1 cup of milk. I put milk and potatoe in a mason jar. Same glass jar used for home canning. Take the blade assembly from the blender put it on the mason jar and blend about one minute. (blade from many blenders fit a mason jar)

    Since the only eating tool I have is a 60ml syringe I just draw the potatoe up into the syringe Squirt into my mouth and it goes down.

    Potatoes are very easy to flavor just a little spice or small piece of meat makes a huge difference.  A baked apple is good.  It will never taste like mom's apple pie but its better than a potatoe.

    I hope his swallow test goes well. Here it is used primarily by the speech pathologist to determine what muscels can be used for a speech device.

    George