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Tongue Based Cancer - One year on

Phil.
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Hi Everyone

I am now 13 months on after having 6 weeks of Radiotheraphy and Chemo, cancer had spread to right hand side of neck into the lymph nodes and a large tumour under the base of the tongue.

I am in remission and want to give everyone who may be goiung through this treatment or still in early stages after treatment that things do get better. I do have some  taste issues, espeically with sweet things, fruit and saliva is limited, but apart from that everything is more or less normal.

I can fully enjoy life, go out for meals without worrying what the menu is.  Looking back it was probalbly this Jan,  one year on from when treatment  finished, where I felt my full energy levels return, before that I would still get tired at times. I am very active and gradually got my fitness back to pre cancer. This has really helped my mental state, and overall mindset to remain posiitive.

I still remain positive that further improvements will happen and currently trying Hypnotherapy to see if that can re-wire the brain for memories of taste. I just want to expore every avenue and I have nothing to lose if it doesnt work. 

I hope this message may give some hope that things can and do change for the better.

Phil 

  • Offline in reply to Onestepflash2025

    Hi Mary

    Brilliant you are trying to push yourself and yes the excercises were tedious at times, but so essential to do.  It is slow and steady recovery, you look back a few weeks and think, ok yes that seems better.

    I was very impatient as it seems you are, I remember they told me, would be a long time before I would eat Steak and Chips in March. So on 1st April I had a small steak and some chips, took me about an hour to eat it and didnt get much taste, but I then emailed the speech therapist a picture of me eating it.. 

    Although I am probably now not going to see much change, unless the hynotheraphy works. Worst or best thing depending how you look at it is I cannot get much taste from  sweet things like chocolate, cakes  and probaly most frustrating element is most fruit tastes a bit off or sour.

    Just keep going and it will improve. 

    Phil  

  • Offline in reply to Phil.

    Thanks for your encouragement. 

    Mary

  • Offline in reply to Onestepflash2025

    Hi 

    I had my op on 14 march 2022 with neck dissection as well. I got my results this week and I've been so lucky no further treatment needed.

    I'm on a purée diet at the moment can I ask how long was it for normal eating and when does the swelling on the tongue go down.

     

    My skin graft on left arm is the most painful if all at the moment and I'm trying to not sleep in the day and get a good night's sleep every night. 

    The tracky hole is still there so I'm finding this a nightmare at the moment pressing the button whilst talking eating and drinking, can anyone tell me.how.long it took for tacky hole to heal??

    Thanks

    Amanda

     

     

  • Offline in reply to Phil.

    Hi Phil

    Been reading your posts i was diagnosed with tongue cancer came as a complete shock. Had radiotherapy 5 days a week for 6 weeks and Chemotherapy twice over 6 weeks

    I had a very high dose , the treatment is not nice but necessary I know. The recovery I have found horrendous with all side effects.

    I am 7 weeks post treatment now, I am mainly eating soups and deserts plus still having protein drinks via the tube on bad days. Every day I wake up I have different tastes in my mouth salty being main one. I can't eat dried food like toast . If I try and can't do it I become frustrated and upset.

    I feel I am never going to be able to eat propperly  will this ever come back. Will I ever recover . I try to be positive am back at work part time 

    Lynf . 

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