@Alan22  nice to hear from someone further out than me.  I can eat chocolate by having a cup of coffee or hot chocolate on hand.  Most of my meals are covered in gravy or white sauce, this works for me better than drinking water.  I am missing a chunk of taste buds as the removed a portion of my tongue and repaired it with a flap from my foreare. One of the most challenging things is going to hospital for day surgery or pre admission clinics.  All they seem to have to offer is sandwiches which are almost impossible to eat.  Today I got icecream and yoghurt and was told I could have taken my own soup in a thermos. My next project is to contain all patient liason officers public hospitals here in the west and request that changes be made to this process.  There are hundreds of people who for one reason or another are unable to have sandwiches. I have been discharged from the ENT clinic and now my local GP keeps a very close check on me. ... View more

@Jen827  Hi there, I am five and a half years post treatment and sometimes still have this problem with chewing and then trying to swallow.  Mainly with some meats such as steak.   Also well cooked meats as in casseroles can also still be a problem.  Sorry to burst some bubbles but there are some things that will never get better no matter what the doctors may say.  We are all so different to start with that they just don't know what will happen.  Read back through some of my other posts and you will get a different perspective from the Captain's. I just go one step at a time one day at a time and have to keep going so as to care for my husband of fifty years. Just experiment with different foods at different times to find what works best for you.  In my house the standing question is "what will I have for lunch, maybe soup. Yep think I will have soup"  This is my go to most days.   ... View more

Hi All, some of you have been asking how long before things get better.  Well I am 5and 1/2 years post treatment and while things have settled there is some that will be life long. Taste is still all over the place and really depends on degree of mucosis and also degree of oral thrush.  Did they tell you this can become a problem because of the lack of saliva.  I have to take a prophalatlic antibiotic to keep the thrush under control.  As mine was on the tongue with almost one side being removed and replaced with a flap from my forearm, my taste will never be the same.  Big chunk of taste buds now missing.  Also that part of my new tongue gets cold which is a really strange sensation. I have what is called a woody neck as a result of radiotherapy scaring and that side of my face and neck have a different skin texture.  Also because of the nerve damage where they did the neck disection, my ear is extremely sensative particularly when it is cold. I still struggle to eat some does and often skip lunch because it is all too hard.  Soups are my main go to and evrything else is smothered in gravy or white sauce.  Chewing can be a problem as it makes my nose run and eyes leak.  Apparently this is normal. There are a few side effects that some experience that others don't and it really depends on where the cancer was, what surgery was done and the follow up treatment. Some days are harder to get through even this far out but it is one step at a time, one day at a time. Everyone will find their own way to deal with lasting issues and with support from family, friends and this forum you will make it. As to the weight issue, I lost sixty kilos all up and have kept most of it off.  I was morbidly obese before the cancer so this was my silver lining.  Weight loss was due to tube feeding after op didn't agree with me so didn't get much that first week.  then only eating very soft foods and soup for a couple of months.  During treatment I was unable to take anything by mouth for about three weeks and just as they talked about putting a peg in, I was finally able to get some shakes and ensure down. This is a lifelong journey and being a Thursday's child I have far to go. Best wishes to all ... View more

Hi All Noticed some comments about neck fibrosis and thought I would add my experience.  As most of you know I am five years post treatment and somethings are only now settling. The term the doctors at my ENT clinic used was Woody Neck.  There is a hard mass on my jawline extending down into the neck.  This is the scarring from the radiation.  I don't get cramps as such but my jaw locks up from time to time.  This is worse in the cold weather and I have to use a head pad on it. Also have trouble with the ear on that side, tip of ear is very sensitive and sometimes feels like a spider or insect crawling on it.  When it is cold if it is touched it hurts, fun when getting hair cut. Also finding my jaw is out of line after having mouth wide open for dental treatment and it also aches more.  Takes a few days but does settle. When jaw "locks" up, I just do the exercises the speech therapist took me through when I first had my op.  I was lucky in that my swallow and gag reflexs remained as before.  The saliva issue is an ongoing battle so I always carry a bottle of water to "wet my whistle" when conversing with people. These are some things that will never improve and you will find a way that works for you.  Also my GP is one of the best support people along with the Primary Helath Care nurses at the G P's surgery. Now I am focused on caring for my disabled husband and having lots of fun with our beautiful grandaughter who will be eighteen months on Friday.  I mind her one day a week and sometimes over night on weekends wheh her parents have a night out.  This is the best medicine and I than the medical who worked their magic so I can be here to enjoy this time. All the best to everyone, Just hang in there and take one day at a time. ... View more

Hi Mozz, I don't post much these days as I am 5 years post treatment.  I can relate to the problems you are experiencing as mine were very similar.  The main reason they don't tell you much about the side effects is because they are vastly different for each patient.  As we are all different so the reactions are different, thye can only give us advice in general terms.  I also had severe oral thrush and still get it on a regular basis.   This is due to having compromised saliva, some days almost none.  I will have to take Fluconazole at least twice a week for ever or until it affects my liver.  I was also very tired for months after treatment and then due to a diligent doctor we discovered my magnesium level was dangerously low, took supplements and it helped although I still have bouts of low levels. Some things will improve over time and others may never return to normal.  Even after five years my taste is still very much hit and miss, might have something to do with the fact that partof my tongue is actually from my forearm. Even after all this time some days are a struggle particularly when everyone else is enjoying those foods I can no longer eat, such as fresh sandwiches.  I have learnt to adapt some things and there are a few softer foods that I love so enjoy those.  When going anywhere that you are asked to contribute food, I take what I can eat and everyone is happy with that. I haven't had a can of soft drink since the cancer first appeared as the bubbles now hurt my tongue, funny sensation.  This is a good thing as it helps me keep my weight in check. Let people around you know that sometimes you need a break from all the well wishing and positive reinforcement, those that really care will understand.  I have told those closest to me that I do not want to here the saying "but you are still here".  I have lost some very dear friends and family to this disease and sometimes it hurts when someone says this throw away line. Most of all be true to yourself, be in this fight for you and remember to put you first sometimes.  Life will never be the same and you will learn to adjust to your new life in time. All the best and may you also be with around to celebrate five years post treatment. ... View more

Hi everyone, it's been awhile since I posted anything.  I am now five years post treatment so clinic visits have finished along with dental checks.   My experience was on my tongue with one lymph node in richt side of neck affected so only had radiation treatment.  I remember first few weeks were okay and then it hit me with avengence.   They gave me xylocaine which is a thick pink liquid that you dilute with water and rinse about five mins before eating or drinking.  It is a liquid topical aenasetic (excuse spelling) and this worked a little bit.  Tried the difflam as well but four weeks in and nothing worked, could not even drink much water.  Just before they were going to put a peg in I was finally able to manage enough ensure to slow the weight loss. Mucosis was really bad and I still have a mild form even today.  Without saliva you cannot cough up phlegm.   As the removed a loarge prtion of my tongue and replaced it with a flap from my forearm my taste buds have only partially returned.  So much for they will be okay within a few years.  I had liquid oxycondin, morpine and duregisic patches to help with the pain.  I got off the patches about six months after treatment as I insisted I needed to stop them.   These days eating out is a test as without the saliva you are limited in what you can eat.  Try getting people to understand that you cannot eat sandwiches, it is fun.  My family have been a great support and all keep in instant gravy for when I am having a meal at their place.  Every thing is with a side order of gravy or white sauce.  Sweets are with cream or custard.   Some days my tongue doesn't want to co-operate and I have trouble with some words, the worst being anything starting with W.   It is a long road, but eventually you will find your normal.  It has taken me this five years but now things have settled into a pattern and I just plod along and ride the bad days as the good far outnumbered them.   I am for ever grateful to my doctors who acted so quickly in the begining and for their continued support along the way.  The main one is having a very good family GP who keeps a very close eye on me.   The other plus for me was the weight loss, 60kgs all up, as I was morbidly obese before all this happened and now I am just a bit overweight.  So look for a silver lining and focus on that. Good luck to everyone. ... View more

Hi everyone on this journey, I haven't posted for some time but have been following everyone's posts.  Let me update you where I am at.   I am officially in remission as it is five years post surgery, January will be five years post treatment.  No more clinic appointments for  me.  Luckily I have a very good GP who keeps a close eye on what is happening with me. There is not a lot you can research as we are all different and no two people react the same to treatments.  A lot depends on what type, how mcuh and strength of treatment as to how your body will react.   I found out about the over production of other fluids when no saliva by chance.  Discussed the issue with a Resident one day and he related that he had other patients experience the same thing and that was how they worked it out. Also, if you have radiation treatament in the head area your Hypothalmus is affected.  This is the main reason for the thyriod getting out of whack along with several other glands.  This is the area of the brain that regulates body temperature and this is why some of us become intolerant to cold weather. I have to wear "ten" layers of clathing if I am going out when a slight cool breeze is blowing.  As I tell people when the ask "I am f** freezing" For some of you things will improve in time, for others we will reach a point and that will be it.  Because a large portion of my tongue was removed I am missing those taste buds and the others are still recovering. The mucosis is on on going issue for me and I have learnt to live with it. I also care full time for my husband who is wheelchair bound and can only transfer from the wheelchair to another chair or the bed.  He now requires help getting dressed and showering.  Luckily during my treatment he was still able to walk with a walking frame.  I also had my brother living with us and he helped with meals. Now it is just the two of us again because my brother has gone to live with the baby sister. Whilst the cancer journey has been a pain, I try and focus on all the positive things in life.  My son turned fifty this year after a very long battle with drug addiction had us doubting he would live this long.  My beautiful daughter gave us the most precious gift last year, a granddaughter.  Harper Grace is such a joy and keeps me busy one day a week.  This little one even looks like her Grannie. The one thing I still have a problem with is when someone says "but you are still here and that is all that matters", I just want to scream.  They have no  idea of the journey we have travelled to get this far and we are all grateful for the help and support given to us on the way.  We don't need to be reminded of the battle. Take heart beautiful people, there are so many of us out here battlling one way or another.  One step at a time is all we can do.  Only surround yourself with those that truly care.  I have the two of the  most beautiful children, their partners and a very small network of close friends.   Keep strong ... View more

Thanks for replying, yep I am on thyriod treatment and may have to increase dosage as my last blood test was a bit suspect.  I am now officially in remission as it has been five years since first diagnosed.  My taste buds have still not recovered completely and of course most on the right side are gone.  I suffer in the cold due to the area that received the radiation seizing up.  some days I have trouble opening my jaw wide enough, great when at the dentist getting treatment.  Also the flap in my tongue gets cold and does not warm up even with a hot drink.  I have developed a sensitivity to salt and can no longer enjoy anything with even a small trace of salt.  No more chinese for me.  I am lucky in that I have had wonderful support from my GP clinic and they are constantly monitoring me.  I have blood tests every three months to check thyroid, blood sugar and also magnesium levels.  Depleted magnesium was another side effect I had after treatment but I know the signs and take a powder supplement when low. There are some things that never return and when cancer strikes the mouth and throat area there are a lot of little things people take for granted that are affected.  Most people have no idea just how important saliva is to able to do many simple things. The other thing that happens to me is that my nose my run or tears flow when I am eating, especially if I have to chew a lot.  One of the doctors said he had other patients experience the same thing.   Apparently the area of the brain that tells your glands to produce saliva is the same for nasal mucus and tear production, so when one doesn't happen it makes the others. I struggle still with not being able to eat many things and having to constantly explain to people why I can't have even sandwiches. Now I try to focus on my beautiful grandaughter who just turned one and give thanks that I am here to enjoy her.  My other reason for fighting on is that I am full time carer for my husband of fifty years.  Hope that you continue to make progress and one day be in official remission. ... View more

I had tongue cancer, confined to right side only. They found aggressive cancer in one lymph node so had to have 36 radiation treatments. Initially I had the same problems as you but avoided having a PEG, just. Now 4 years later my taste is just returning to the point where I can distinguish salt and sweet. Doctors said that was unusual to take this long. The mucositis will never completely heal as the saliva glands have been damaged. The thick ropey mucus will lessen and the need to cough it up will go. This took about 6 months for me. Eating is still an issue as without the saliva there are many things I can't eat, like bread. Mostly have semisoft foods with plenty of soups and casseroles. The joke here is "do you have a side order of gravy with that" or a side order of custard. There is one side effect that I struggle with and that is my body over heating for no reason. It has been suggested that the hypothalmus was compromised during treatment. My ENT doctors don't call these things side effects they say it as a result of having the treatment. ... View more

HI Bev, I also was diagnosed with tongue cancer last year. Like you I am a non smoker and also a non drinker, this makes us unusual when it comes to tongue cancer. Trauma can cause it and I can trace mine back to having my tongue damaged by eating chilli some years ago. This area never healed properly but when biopsies were done they came back as ulcer, no suspicious cells. Then a year ago all that changed. I hope you are going well now. Did you have any radiotherapy or chemo? I found the radiotherapy worse than the operation and 7 months later I am still learning to live with the changes ... View more