hello

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Hello

I am new here. I had surgery to remove a parotid gland tumour a few months ago, followed by radiotherapy, which ended 6-7 weeks ago. When this started I put on a brave face and was optimistic about getting back to a "normal" life (a new kind of normal, I know) within months, but as the weeks after radiotherapy pass I I am losing my courage. I was hoping to be able to eat by now, but I'm still feeding through a naso-gastric tube, as my mouth and throat are still very irritated, dry and sticky. I read about dry mouth persisting for years and starting to wonder if I will ever enjoy food again. I am skinny and I need to eat well to keep my weight. And food used to be one of the great pleasures of life. I'm curious whether others have faced the same fear and whether/how you have coped with this.

All best to everyone

  • Hi Robert and welcome. 
    What you feel is exactly what all of us do. You are still very early in your recovery, a recovery which takes time. I was on morphine still at 12 weeks, eating soft tasteless food 

    When you do start eating supplement with Fortisips or Ensures to keep your weight up. Saliva does recover to around 75% for most of us but it’s a long process. Take ur day by day and you’ll get there 

    I’m now over seven years clear of six weeks of RT and living a good life  

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi Robert, welcome to the group from me. Dani is right we all feel the same way, yet we all recover in different time scales there's no set time for recovering. You have to give your body the time it needs to recover; it can't be rushed. There are people on here who have eaten all the way through their treatment and some who take much longer to start eating again. I lost my voice for several weeks, and it was months before I could eat or taste small amounts of food, I thought I would never enjoy food again. Try not to get frustrated it will all happen in time.

    Ray.

  • Unfortunately dry mouth is part of the new normal for many...easily managed by hydration and gels/sprays...

    I lost my appetite and taste for around 6 months but it started to slowly improve, I kept on challenging myself with different foods and drinks...great success with some...disappointment with others...3 years since I finished CRT and I can eat and enjoy most things...I love a hot curry washed down with Guinness alcohol free...my fav go-to snack now is toasted chili cheese topped with Tomato ad red onion chutney...there is life and enjoyment after treatment.

    Michael

  • Thank you Dani, Ray and Michael, your replies give me hope. Would you say it's best to move conservatively, sticking with comforting food. Or does it make sense to taste different things and try pushing the boundaries?

    Roberto

  • Personally I pushed...slowly at first...my CNS encouraged me to do so...some foods and drinks were too harsh for my damaged mouth and throat to start with but with time and healing I started to tolerate them...and enjoy them

    Michael

  • I just tried small amounts of different kinds of food, things that could go down easily, i.e. milk puddings, runny porridge, poached or scrambled eggs, soups etc, adding lots of cream and butter where you can, for the calories. Try not to push yourself, it will all happen in time.  

  • Any specific recommendations on saliva substitutes, gels, sprays? The one my doctor prescribed has a horrible taste. Biotene gel is the best I've tried so far.

  • Oralieve is good. 
    I was given Saliva Orthana which was disgusting 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • I still use Biotene gel...works well for  me.

    Regular hydration is a necessity.

    Michael