Hello - I’m new to this group

Hello Harvest Moon and welcome to the community

I am two years out of radiotherapy for base of tongue SCC 

No work for me though. I’m retired and living well. 
Fire away with your questions. There is a wealth of knowledge here and it’s full of people who do know how you feel. 

Harvest Moon

Welcome and I am sure you will be able to help others as much as find help.  Its good to share experiences.  Fortunately, like Dani, I don't have to work, but for many work will provide a useful distraction.  Hopefully, your employer will be understanding and offer a decent phased return with good support to you.

Hi Harvest moon 

I am 33 month post radiotherapy for tonsil cancer with several affected lymph nodes living life to the max. Welcome to our group any questions just pop on

Hazel 

Hi Dani

Thanks for your response. 
 
How are your tastebuds after 2 years? Mine are still quite bland- cheese n onion and sadly chocolate are my current favourite flavours. 
I initially had my tonsils removed prior to my treatment and still choke quite a lot when swallowing. I still feel awkward eating in front of anyone- although with lockdown- I eat on my own just now. 

Have you had much improvement in taste and swallowing?

The leftside of my face is still quite numb due to pressure of tumour on nerve. 

Regards 

Margs 

Hi PFJTHS

If possible I’d like to help anyone I can. 

I can’t make up my mind if I want to return to work at this stage. You do put your life into perspective when you are diagnosed with cancer so an early retirement is on my mind. 
I may even be made redundant after the company I work with having furloughed most of it’s staff due to Covid19. 

Get a chance to try some of the things/hobbies I’ve talked about for ages but always put aside. 

Hope you are enjoying your retirement. 

Regards 

Margs

Hi Hazel 

Thanks for your response. 

I had my tonsils removed prior to my treatment. Only good thing is I lost 3 stone after my tonsillectomy and combined treatment.

Tastebuds not great and still choke a lot when swallowing. Can’t eat most meat- mostly prefer vegetarian foods now.

How are you re tasting and swallowing?

Regards

Margs 

Hi Margs

i am fine on swallow meat wise chicken is the worst although last week I managed actually to eat a battered chicken fillet ! Mince is still hit and miss pork rarely try it . . Lamb shoulder lamb chops are fine leg of lamb difficult nothing spicy passes my lips. Rice is difficult potato hit and miss set bought a deep fat fryer fir those rare occasions we have chips. Fruit banana black grapes  cherry’s strawberries (a few) are fine. Crisps only plain snd not regularly. I didnt drink before and if I try a sip of hubbys it’s like vinegar. So overall pretty good. 
Taste wise I never lost it even through treatment, some days taste buds are over sensitive in a hyper way. I will often accuse hubby of over salting stuff 

hope this helps 

Hazel x

Hi Margs

My taste is fairly ok but not as acute as it was. I can taste everything but it’s not in HD. I have strangely developed a sweet tooth which I never had. 
My saliva took a while to come back properly and I helped recovery along with acupuncture targeted at improving surviving salivary function. That has helped tremendously. I no longer bother carrying water around with me though I am a slave to sugar free gum which really gets the saliva flowing. I always have some in my pocket. 
2 years on I can eat anything even chicken breast ( with lots of gravy) but I do tend to enjoy veggie things more these days. 
It all comes back and patience is the word. 

Hi Margs and welcome.

I was diagnosed with base of tongue cancer in May 2018 and had robotic surgery to remove the tumour and a left neck dissection followed 6 weeks later with rt.

I was a gardener but have been unable to return to work due to various ongoing issues that have still to be resolved.

I've read in your replies that your taste buds have not fully recovered.  Neither have mine and like you I'm unable to eat meat due to taste and texture so vegetables are the order of the day cooked in various guises for me too.  Many other foods are also off the menu ie tomato, chocolate, mayo, pickle, most fruit, rice - I won't go on.  But, at least I can eat so I'm most thankful for that!

I do have to be very mindful when swallowing as it's very easy for liquids and food to go down the wrong way and end up choking.  They did find that my epiglottis doesn't close properly now hence the difficulty with swallowing plus I have developed a ledge of scar tissue on the base of my tongue which makes it problematic getting food passed it.

I havn't completely given up on the tastebud front as I've read posts where some foods do become more palatable 3 years + down the line.

Good luck with the work decision - one I don't envy.  I suppose it depends on your reasons for feeling anxious about returning.

Linda x 

Hi Dani

I can’t wait for my tastebuds to greatly improve. Can’t say I’m missing meat too much.

I still take my reliable bottle of water everywhere with me. Mouth really dry first thing in morning and when I talk.

My dentist prescribed me with an oral spray and oral gel but I prefer water. 

Did you find your own acupuncturist or was one referred?

Yes as you and my dietitian say - be a little more patient. I’ll try. 

Enjoy the weekend. 

Regards

Margs