tonsil cancer survivor 8 years

Hi Nanaarthur and welcome. Congrats on your long remission. I’m intrigued by the tea but I suppose the recipe is secret. Most of us here have had tonsil cancer or base of tongue which is more or less the same) I am four years clear and the only significant side effect I have is a slightly dry mouth. 
Move cancer charity yesterday hosted a short webinar on long term side effects run by Emma Hallam who operates a long term side effects unit at Nottingham university hospital. She has a special interest in HNC. 
It was recorded and will be available shortly 

What side effects are you coping with? 

There’s a thread running here too 

community.macmillan.org.uk/.../what-is-your-understanding-of-late-onset-side-effects-please

hi Beesuit  the original tea was to reduce pain swelling boost my immune system and whatever else she thought i needed. so there was all sorts in it.  it certainly did the trick.  after the radiotherapy she adjusted the tea to help my recovery . The consultant and the staff were amazed but even though i sang the pariases of natural herbs from the rooftops they didnt seem to want to recommend it to anyone.

anyway the basic tea i have now is a mixture of sage / marshmallow root  and liquorice. i dont know the ratios of each.

if you dont have a herbalist near you she is based at ORCHARD BARN IN STALLINGBOROUGH near grimsby and have a shop. i think they can post it out to you.

i have found MARSHMALLOW root very helpful on its own as it is mucus forming . i put a teaspoon in a glass jug ( 1 pint)  and pour boiling water over and you have to let it soak either over night or all day. i do it all day to drink at night to help my dry mouth. it is like drinking silk.

my side effects are virtually no taste buds very little saliva and an extremenly dry tongue and back of mouth/throat.

i am managing but even though i drink lots the back of my tongue and mouth/throat is like velcro and blotting paper. i can drink a pint of water and its still dry.

i will look for the look out for rthe webinar.

linda 

I found that chewing gum and acupuncture helped my saliva but I don’t know how that would work so long after treatment end. 
There are two posts on acupuncture on my blog linked at the bottom of my post. 
Spraying your throat with water ( just one or two sprays) works better in moisturising your mouth than drinking which washes saliva away. 
Have you tried xylimelts at night? I still use one. It keeps my mouth comfortable all night. 

NANAARTHUR said:

i will look for the look out for rthe webinar.

I’ll put up a link when it’s posted. 
We have a lady here who messed up her blood pressure with liquorice so be careful 

will do thanks for the tip about xylimelts ill try it

linda

NANAARTHUR said:

i will look for the look out for rthe webinar.

It’s up and running 

Macmillan don’t allow links to a well known video platform but if you Google Head and Neck Cancer focus with Emma Hallam you’ll find it. 

Hi be very careful with liquorice tea or I used to have 1-2 cups a day and all of a sudden I developed banging heads never had b p issues. G p checked me snd I was 210/110 was immediately put on 5 mg amolodopine b p tablet fir life. Liquorice is highly addictive and 50 times sweeter than sugar there’s a component in the root it’s called glycrrhizin . If you  look on a packet of liquorice tea there’s now a b p warning  just be careful 

 I  am almost 5 years post for tonsil cancer. I too had acupuncture plus sugar free cheek g gin and pop 1.: an xyimelt in at night. My dry mouth is perfectly normal  during the day now. 
Hazel x

thanks for that i don't have the liquorice on its own it is in a mixture made up by the herbalist and is perfectly safe iv'e been using it for 8 years.  thanks for letting me know about the xyimelt i am going to try some.

do you have problems eating certain foods  mainly textures  rather than taste as i have hardly any tastebuds

linda

Hi I occasionally have burning tongue/ mouth syndrome I’ve learnt the trigger points for me are fermented foods some strong cheese pickles acidic  and citrus does and I can’t tolerate anything spicy. Chicken breast is difficult  in texture so I substitute chicken thighs or legs. Mince can on some occasions be iffy again in texture I am an oddball I never lost taste but I have accentuated taste buds, which have their own issues.  I can tell if a manufacturer changes their recipe s on a favourite food on occasion. I can’t tolerate alcohol as it burns my mouth bit that’s fine as I wasn’t a drinker previously. Im do try a sip of my hubbys drink sometimes just to check.. But I can eat well bread cakes biscuits most fruits and vegetables ,fish and now most  meats bacon isn’t easy either, I can do aromatic currys so use cumin coriander and coconut milk if we have a curry  

Hazel x