Hi all, I am almost 11months post treatment

Hi Bill2788, I had tonsil cancer, with the same treatment as yourself, that finished 31/2 years ago. Getting back to eating was a long process for me ,as I just didn't feel like eating, and my mouth was so dry. However things did  get better and I started to eat more, with plenty of water to help it down. I'm sure you will find that your taste and swallowing will improve with time, and like myself be back to almost normal eating, so hang in there, there is light at the end of the tunnel. All the best to you.

Regards Ray.

Thanks for the reply old biker, I think I may be being a bit impatient... I seriously underestimated the treatment before it started and now it feels as if  the recovery is taking longer than I ever expected 

Hi Bill and welcome.

The good news is that taste and saliva can continue to improve so don't give up hope.  They may not return to what they were pre-treatment but just keep trying different things all the time. 

I finished treatment in August 2018 and can't eat a packet of crisps but still nick one from someone else just to see how I get on.  Bread I can eat if I dip it into soup but meat still doesn't suit my tastebuds or my swallow.  Again, I'm constantly trying little bits from someone else's plate or while I'm cooking.

Some people find acupuncture helpful in stimulating saliva and sugar free chewing gum.

Keep at it and good luck!

Linda x

Hi Bill. I’m 33 month post radiotherapy for tonsil cancer with several affected lymph nodes. Now I would say I am eating pretty much as I did prior to treatment. Crisps some days I can some days I can’t. Plain or cheese n onion am ok but other flavours no. Spicy food is not palatable for me. Now I can eat most meats rare steak lamb pork is harder. Mince takes a while snd chicken legs or thighs easier  than chicken breast. Chips take  longer chippy  chips ok home made deep fat fryer ok oven chips no. 
I had acupuncture to kick start my saliva and always have sugar free chewing gum to hand. I no longer constantly have water in my hand but do drink at least 2 litres a day. 
taste I never lost. 
hope this gives you encouragement   Even now I am still noticing small improvements 

Hazel c

Hi Hazel, this whole shenanigans started because my tongue was playing up and I was having difficulty in swallowing certain foods. The tumour was 40mm and situated at the base of left hand side of my tongue, they say that the treatment worked, yet I’m in a worse state now than I was this time last year, at least back in the day I had taste and saliva . The left hand side of my tongue is cream crackered from the nerve damage caused by aforementioned pesky tumour and still seems to be slightly swollen and tender, I’m wondering if this is normal?. It’s all very frustrating and there’s always that niggling doubt that something isn’t as it should be, if that makes any sense.

Hi Bill

My tumour was also base of tongue.  I do find that area is very tender and I've developed scar tissue in the area which makes swallowing even trickier.

Do mention any worries to your team at each appt so they can check, even at the risk of repeating yourself - that's what my team advised me to do.

Linda x

Hi Bill as my oncologist said to me you may be fit and  feeling well now but by time I’ve finished with you he apologised and said you’ll feel worse than you thought possible. He was  right . I know exactly what you mean but I can honestly say my mouth now feels like my mouth I never thought it would.ok I still have odd moments of dryness but nothing like the first 18 months Lack of saliva is horrid. Re your tongue I would contact my Macmillian nurse as they always say we are here to help it’s just the reassurance that you need. Or contact your consultant s secretary they are onky a phone call away. 
best wishes Hazel x

Hi Linda,

I mentioned it to my speech therapist and dietitian, they say it’s to be expected, however I suspect they haven’t been through it. It’s a lot better hearing it from those who have a firsthand account of it 

cheers

Bill

Hi there, I'm 2.5y post treatment & find meat difficult as it's so dry & difficult to chew with a tongue resection.  I eat minced beef but am otherwise pescatarian.

I've recently found that hoisin sauce tastes good, flavoured but no chilli so thats great. Sometimes my mouth is sore & I have to watch sharp things like crisps but sometimes I can eat with no problem. 

I drink lots of water when I eat & that really helps. 

Cathy

Unknown said:

Or will it get better

Yes it does

I had 30 fractions of RT to the back of my throat  

By 18 months I could happily chomp through a packet of crisps without a drink. I can even manage a Jalfrezi if I add yoghurt and mango chutney. Dry white meat is doable but too much hard work so I avoid it. 
I chew gum to keep my saliva going and have acupuncture to stimulate remaining salivary function. I go to bed with a xylimelt tucked into my cheek. 
I cut the umbilical cord to my water bottle months ago. 
Life goes on, just a little differently and the art is patience. 
You will get there. 
Best wishes