@Bill1  Hi Bill, you must finish your treatment.  Yes the mouth is painful but it will settle in time.  Took me a couple of months and I was on liquid oxycondine, morphine and duregisic patchs for a while.  Off my face there during that time. My doctors said it was not side effects but as a result of having radiotherapy.  I wasn't able to even drink for about three weeks even with the liquid linacain mouth rinse. One day at a time, one step at a time. ... View more

Hi everyone Have seen a few posts with queries regarding problems during and post teatment. I am almost six years post treatment and my experiences relate to patients in Australia. All the major problems during treatment such as pain and extra thick mucus went after some months. Then it was adjusting to just what I could now eat. Things to remember and they may not tell you because everyone is different. Saliva glands are actually destroyed during radiation treatment and they never recover.   This means you will have a lack of saliva for the rest of your life.  If you still have some, it will be thick and not much good.  This is why they get you to have regular dental checks and to make sure you clean you teeth and moth daily.  This also leads to ongoing problems with oral thrush. Your Thyriod glands are more than likely affected and you will need treatment for this. Magnesium levels are often depleted and will need topping up from time to time. If most of your treatment was in the neck area you will have scaring and the nerves will be damaged. I suffer in the cold weather and this area becomes very sensitive to touch. Also have sensation that feels like ants or spiders are crawling over this area.  Apparently all normal for damaged nerves. The biggest hurdle is finding which foods you can now eat because without the saliva it is difficult to swallow some things. Gravies and sauces become your best friend along with custard and cream. I have found water is the best thing during the day and also have a bottle by the bed for night time. I always rinse my mouth with Biotene mouth wash first thing in the morning.  there are others on the market. Hope this helps some out there as it is a long lonely road.  Only those who have traveled it will understand. Best wishes to all ... View more

@Bill1  Hi Bill, I am six years out and still have problems with oral thrush.  It is an ongoing condition because of the compromised saliva, or total lack of saliva. My doctors prescribed Fluconazale  (spelling  is off today) first when I was having my treatment all those years ago. It is a propholactic antibiotic that helps prevent oral thrush.  In the beginning I was taking it every day but now only take it twice a week. If you take it your GP will need to do liver function tests every six months or so as long term it can have an effect on the liver. Sometimes the thrush flares up and I take every day for two weeks then back to twice a week. It is often prescribed when there is immunology problems. Hope this helps. ... View more

@Jen827  Hi Jen I am six years post operation, actually today is the anniversary of this journey. Please go back and try and read mosat of my threads as I cover everything except the feeding tube.  I was able to avoid having one under advice from a very dear friend. The saliva problem will remain for the rest of your days and the glands do not repair.  Taste depends, for me it is limited as they removed a large portion of my tongue. Food is a problem still this many years down the track and there are certain things I will never eat again.   The upside to this is my weight problem is now under control.  All my main meals are served with a good serving of gravy.  Also eat a lot of home made soup with is packed with lots of goodness.  I grate the vegies for my soup as I find it requires less chewing. I have a lumping neck and my right jaw line is a rock solid mass.  Just all part of the fun. It is hard work adjusting to this new life but with the support of friends, family and this forum you will make it. ... View more

@CaptainAustrali  Hi, it is exactly six years since we discovered cancer on my tongue.  The doctors moved that fast I didn't have time to think.  So I am five and a half years post radiotherapy treatment.  I didn't have to have chemo so that was a plus. I have what they call a woody neck due to radiation scaring.  At times it feels like there is a lump there and is worse in the cold weather.  One spot is a bit tender if it is pushed on so I leave it be.  Sometimes it is difficult to turn my head fully to the right, side operated on and had heaviest doses. The shoulder on that side has dropped and the clavicle is raised as though it has been broken.  This is due to the muscle weakness where the cut into my neck. Reading some of the posts brings back memories of that dark time.  Now six years down the track I am still learning to adjust to not be able to eat a lot of the foods I enjoyed before this episode. I have learnt to manage some things but at times I would really love to go and have some junk food.  We rarely eat out as it is too hard to find something on the menu for me.  When having family get togethers I always prepare what is easiest for me, everyone understands.  This is also the case with my close friends. I would like to say some things get easier but unfortunately the things that have been lost never return.  My taste has never recovered fully, I guess because almost half my tongue was replaced with a flap from my forearm. On the bright side, it was caught in time and I am here to enjoy my beloved and long awaited grandaughte who will be two in a few weeks. Cheers to all and just take one step at a time, one day at a time. ... View more

@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