Great news re melanoma yiubare due some good news
Many thanks - I'm still finding it hard to believe my good fortune this time.
I'm glad to see that you are enjoying your hols. I'm in awe of how active you are!
Thank yiu haven’t always been it’s onlyvsincex2015 when I rediscovered biking ! Typical last year I had never been as fit and look what I got !,,
determined now not to let it define me so onward and uoward
Hello Clara great to read you are getting through the hellish time you have had, getting back to normal takes a while but you will get there! yes lots of drinks and food dont seem to taste the same even 2 years later i dont enjoy my food at all the way i used to...infact i dont eat that much any more can go a couple of days with out eating if its not soft then dont want it because i find it hard to break it down... think it affects every one differently. God Clara to have your palate removed up to tonsil piller!... how do you manage to eat, swallow food?? I couldnt even drink water properly had to take small sips...you are doing so well you really are... keep it up Clara you will get ups and downs too we all have, but wer all here for you lots hugs best wishes always> your friend dee xo
It's just as well you were as fit as you were last year. I'm sure that all that biking in Spain has helped to pull you through the nightmare you've endured in the past year. Long may you continue on this onward and upward path, or road in your case.
Thank you am off to bed now , been reading up on parotid gland as my right one isn’t producing thin saliva and untilmitbdoes if it does dry mouth is here to stay .so thinking about acupuncture when we get home willing to try anything.
I have had a lot of bother with dry mouth, due to medication. Have you tried any of the sprays or lozenges, or found anything that works? Please let me know how acupuncture works for this. I have never heard of it being used for this condition.
i have tried all the spray including buying ones in Spain for dry mouth 1 they all taste of fish oil ! Lol which is revolting
2 get no more than a few mins relief from them
I use bioxtradry as a mouthwashwhuch is £9 online but eventually I got dr to prescribe me one a month at a time after a battle but uve has that with my drs all the way through all I get is budget budget .
mine isvaused by the radiotherapy that was targeted through the parotid gland not chemo or meds I know atvtheb2 year stage whatbuvw gornis likely to be as good as it gets .
Re acupuncture will let yiu know an alternative therapist recomenened I try it when we get home I will look around.
ps why are u awake at 0220 !
Hi Hazel. Its me again!!
My husband had his parotid removed. Then the RT left his mouth like a desert. We carried copious amounts of water everywhere we went. I noticed he gradually was drinking less. Around about the 1yr mark his other saliva glands started to compensate and he was fine from then on, but still prefered moist foods.
The downside was gustatory sweating. The nerves from removed gland rejoined and saliva used to leak from side of his head. We tried botox injections but nothing helped. He used to get very annoyed and embarrased with it. He avoided eating out etc.
Take care speak soon xx
I have found the same with sprays, but am interested in how accupuncture goes if you decide to go down that route. I have had dry mouth for 9 years and it is getting worse.
As to being awake at this hour, I'm just a night owl.
I can understand what you mean about being difficult to chew and break down food to swallow. I am having to take tiny amounts on a fork, food is stone cold its taking so long to eat. Choke easily too. Tongue doesnt shape food properly for swallowing.
I cant open my mouth very far my jaw is very painful and stiff, I hope this gets better. 3 weeks since op and still a way to go healing. I was taking liqiud ibuprofen to deal with inflammation but had to stop as I had stomach pain with it.
I had a notion for scone and strawberry jam oh dear when jam touched my mouth it was more like a lemon. Quite bizzare. Tried a sip of cola it was like vinegar. I thought this would only come with RT.
Sending you a big hug :-)))) xx
Hello Clara its so good to hear from you, Hope you are slowly getting back to your old self... 3 weeks since your op? you know clara time goes so quick all this discomfort will get a bit better week by week you are doing well trying to eat your scone and jam! funny how you take a pang for things that you used to love to eat then find it so difficult to break down and swallow I found bread so hard...still do Clara wee tip regarding radio try to drink as much water as you can before and after each session of radio it will stand by you so so much...a lady i met at cancer hospital told me to drink drink drink as much water as you can, I did i truly felt so good for drinking so much my skin was able to stand the 30 doses of radio with out breaking down tho i wouldnt have been able for many more! Clara do wee excercises with your mouth every day more so when having radio gotta keep your mouth muscles moving i was told i would maybe have to get mouth clamp em dont think so! I sang to Adele cd the whole way home! all of 80 miles 160 return every day!! poor husband was tortured hahaa Stay well Clara speak soon. your friend Dee.xo
Hope you don't mind me hijacking your posts.
I went to hospital yesterday to see consultant about small white spot (about size of small finger nail) on the right hand side of tongue also got some red patches & soreness behind spot. Think doc said he thought it was Leukoplakia but I'm not 100% as it all happened so fast. He said doubt it's anything to worry about but to have a biopsy to be sure & id get a call in few days to book slot, got call today & booked in at end of April, my heads in a bit of a whizz!!!
try and chill out drs most if time do know what they are looking at .in my case my local dr put me straight into the 14 day cancer pathway due to swollen protruding lymph node .best advise u can give you in keep off dr google the information is not regulated. If yiu mustvsurf stick to cancer U.K. sit and Macmillan.
Good luck don’t fret until you have news from biopsy easy for me to say but believe me I’ve been there and done it. Tonsil cancer last year with multiple lymph nodes given all clear in January
Hazel come back and update please