Wow, i thought post Op was dismal having the Tracky and eating baby food, but late and post radiation is no picnic,how long do i have to wait till i can taste things again?? can other people discuss there similiar experiences please, it may boost me up and i may see the light at the end of the tunnel
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Super Contributor
Hi oldman Everyone is a little different regarding healing and regaining taste. It took a few weeks and then months and even now sometimes I struggle with taste. I have some good days and some not so great and my buds go on holidays. My saliva is better than it was but that seems to be a slow process and I am grateful to have any saliva at all. Hang in there and make sure you are in the tunnel so you can see the light. 🙂 Julie
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Tks Julie for your kind information,as I am new to forums I am not too sure what to talk about, except I believe that interaction with others who are going through or who have gone through similiar is a big part of the healing process and coming to grips what is going on. I am glad to hear that you have some saliva as have I, nights excepted as I was told I would lose it permanently. I tend to babble on but realise that this is a huge change in my life and family. anyway is this the right section to put this info or do i go somewhere else on the site.
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Super Contributor
Hi Oldman You can post in this section or you might like to join the head and neck section. There are a few of us in there that have all had similar treatments and experiences. I believe as you do that interaction is a good way to come to terms with a lot of things. The treatment that you have had is pretty difficult to get through and the side effects can be many, some being permanent and others not so. I hope your saliva improves for you at night. It sounds like it is fairly early days for you so just hang in there as it does get better. Are you having any problems with ulcers or burnt skin? Rgds Julie
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Tks Again Julie,the names Dave but Oldman is a name dubbed me ages ago and just sticks(HaHa). Yes the ulcers are on the side and bottom of the tongue and the sunburn is not so bad now as i am a week out of Rad Therapy, I also have thrush but it is unbelievably only on the free flap and no where else. I gargle as told with the stuff they give me but Wow it is an effort to keep it in the mouth for as long as they say,Lol, The back of the throat is healing well,I think the worst part of it all is the wait for new teeth as i had them all taken out before surgery. Anyway enough about me, i would like to hear your and other peoples experiences,as i say it should be talked about not left in the corner and it will go away.I believe my case is minor compared to others. As a ending note I sure enjoyed the banter though at the Perth radiation clinic,I think by the time i left the impression i made was a memorably one,haha,We have to stay positive Dave
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Super Contributor
Hiya Dave I went through Royal Perth for my treatment, is that the same for you? Some head and neckers really do go through a very traumatic experience and some are worse than others for sure. I was one of the lucky ones so far. Did they give you the recipe for mouth wash at your dental place? Where did you go for your dental? I went to charlies for that and they gave me a recipe for a mouth wash ... bi carb and salt, which apparently is especially good for mucositous (however you spell it). If you don't have one and would like one i can get it for you. I keep giving away mine and can't quite recall the exact measurements at the mo. One week out is pretty good if you have saliva still and very early for taste buds. take care Julie
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Yes, I went to Royal Perth also,which was pretty good as i drove to every session as i had the 1st one just about everyday and the parking was easy and free and not far from work,I see DR Aggi at Charlies and she is really great,she convinced me to get rid of the teeth as they could be a drama later on. she gave me a medicated mouthwash to use instead of the salt & bicarb & it seems to be doing some good ( 3 days in on it ). Off work for a couple of weeks to try and get my strength back. See i babble on again. How did u find RPH, i thought they were really friendly and went overboard to accomodate me considering there were some 100+ patients at the time. I always tried to be jovial and i can be quite talkative at times.
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Super Contributor
Hiya Dave RPH were wonderful and they were great for country patients as they gave us early appointments on fridays and late ones on mondays so that those that could travel home were able to do so. They were great with me also as every 2nd week i had to go to fremantle first for monoclonal therapy and then down to rph for radiotherapy. I stayed at Milroy which is at shenton park and volunteers would take us over for treatment and then back again. Glad you had a good experience with RPH aswell, it certainly makes a difference i think. The radiologists there are incredible with the amount of people that they see and put through each day. TOwards the end I was having real problems with my skin and they were all very caring and very careful to monitor it. Between us all we managed to limp my skin across the line and finish the treatment. I went home with weeping open sores on my skin when I had finished and a staph infection ... just to round things off. lol Ok, time to get something organised for dinner here. Hows the baby food going? Sick of it yet? Oh, just before I go I must mention the dietician at RPH was just wonderful and a lovely person. It is amazing how much difference they make to our treatment when we have people like that and of course my cancer nurse was pretty amazing too. We still keep in touch and she is very supportive. take care Julie
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Deceased
Hi Oldman54 Many things as well as radiation can affect taste. A lot of us have been there and yes it does come back eventually. (There can be a positive side to it - it is a great way to lose weight if you need to!) For some reason I went through a period of eight months where everything was bland. It didn't matter if it was spicy or exotic flavours, it was just bland. then sudden;ly one day I had taste back.. Strange thing I have been on the same medication since then and never had that side effect again. I don't know why you have the moniker Oldman, but there are times when I just feel old before my time. Cheers Sailor I realize that the old salt’s of tomorrow, start out as the beginners of today. John Jack
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Gday Sailor, no the name has stuck as a user name now for a long time and i believe i am still young even if i do.t fell it,haha Only just finished radiation so i am getting impatient and i have lost the weight that i desire, just need to get rid of the mouth ulcers and get back into the baby food again, no teeth.lol. tks for your post hope hear your story sometime Cheers Dave
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Hiya Julie, Wow it seems like we are long lost friends already,sorry to here about the open sores and other stuff and here i am complaining,all i got was red cheeks and angry earlobes,thats after going through 2 litres of the moisturising cream..LOL A few Ladies i talked to there also had fairly skin issues too,maybe it's my leather face, at least i don't have to shave for awhile. Hoo-Ling was the dietician i saw and she was just great,even ringing me at home if i missed her at the hospital to see how i was. I see you went to freo as well but i didn't understand the treatment u mentioned, i actually had my surgery there and visit the ENT there every so often. How did the dinner go?? I had scrambled eggs,not many ways to cook eggs but that is all i can manage and yes sick of baby food but i have at least 6 to 12 mths still on it or at least just moist diet. Better stop babbling on might run out of paper,haha,warped sense of humour. I noticed u are online but i assume this is the only way to communicate?? Cheers Dave
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Super Contributor
Hey oldman Dave I think the site lags with who is online or not. Or hotmail lags with the site ... who knows. haha You can do omelettes with vegies and cheese and they are fairly easy to get down, plus you can stick an asian gravy on it and that will help with any food sticking. Poached eggs are good also, soup is good and all sorts really when you explore a bit with it. Oh and try a bit of vegemite for taste, it is strong and that was one of the first things I was able to taste again. Julie
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Hiya , omelettes are fine,the veges i puree, but the cheese at the moment just sticks to the mouth like gum..LOL the gravy sounds good some maybe back to the mash/pumpkin and gravy Dave
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Super Contributor
Just to clarify here ... with head and neck patients they are not always guaranteed to get taste buds or their saliva back again ... It can take up to five years for some people to get any sort of result, so slightly different to other people getting cancer treatment. A lot of us have radiation directly to the mouth region which causes a lot more damage. It can be a very difficult thing to come to terms with after treatment finishes.
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