How long....

  • 25 replies
  • 140 subscribers
  • 997 views

Hello all,

I was after some guidelines of how long it's taken people to eat and drink again following treatment.

In a nutshell I got diagnosed late last year with my cancer at the back of my tongue that had spread and swollen my lymph node. I was started on 6 weeks of radiotherapy combined with a weekly chemotherapy session.

The last session was Fri 9th Feb so have had 4 weeks of recovery. Yes the first two weeks following treatment was a bugger as most bit of advice I got said it would. I'm still struggling with swallowing and wondered if anybody has the same?

I'm taking some pain killers that on the whole help, but have a sensation on the roof of my mouth that feels like it's getting acid burn from my flehm/saliva.

I hope this make sense as I thought it should be getting better by now.

All the best,

Si

  • Hi Imjin

    T2N1M0 tonsil cancer HPV+.... finished Chemoradio June 2023

    August before any real improvement for me....September before feeding tube was removed.....different recovery times for all.

    Still improving ...Oncology consultant reckons between 6-12 months for the new normal to really kick in....sometimes shorter sometimes longer

    Helpful reading....Taste Changes - Advice for head & neck cancer patients A4 (cht.nhs.uk)

    Best of luck

    Peter

  • Hi Imjin, you are still in very early days of recovery. Your body has just been put through the mill, and it takes a good while to recover. It all takes time and can't be rushed. Everyone is different and we all take different times to recover, there is no set time. I finished my treatment, in November 2017, started to eat very small amounts of food, about late January early February, after being 100% reliant on my RIG, The RIG was taken out in early April. I ate what I could, unfortunately food tasted awful for months, I thought I would never enjoy eating again, but bit by bit  I could eat more and it started to taste a lot better, by about October 2018, eating was getting almost back to normal, although there were things that would burn my mouth, it's really trial and error, what you can and can't eat. Even now after over 6 years later, sometimes things, taste different to what they should do. It can take a long time, give yourself the time, you will get there.

    Ray.

  • Hi  we are all different. I had the same cancer as you and it was six weeks till I could even try really soft foods and 12 weeks before I could eat anything solid. It all tasted awful but food is fuel and if I could swallow it went down. 
    Honestly if you are still in much pain in your mouth I would increase the painkillers. I was on morphine till 12 weeks. 

    Dani 

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

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi Imjin, congratulations on completing your CRT. As already mentioned, recovery time is varied. I was told that after my final session at the end of August 2021 that I could look forward to eating my Christmas dinner which just about worked out however the road to that was not easy. Like many I had lost a lot of weight during my treatment and adopted the “ food is fuel” approach and tried to get as much calorie rich food down me as I could. Enjoyment was a secondary consideration. Taste and appetite should recover however it does seem that even after some years there will still be things that are no longer an option although, again, this does seem to be down to individual preferences. Two and half years down the line I can eat and enjoy most things. I still cannot tolerate red wine but can eat a mild curry, struggle with ice cream but love marmite on toast!………work that one outSmile.

    Wishing you all the best with your recovery.

    - John

  • Hi Imjin We are all different and it's a case of finding out what works best for you by experimenting . Yestereday I had spaghetti and garlic bread which was sharp in the mouth but managed to finish everything as its essential fuel for the body. Thought I would have strawberries blueberries and yogurt which started off fine then hurt my mouth but persevered and towards the end it stopped stinging. This time will pass just stick with it , I had chemo last week hence mouth issue All the Best Minmax 

  • Hi. As everyone said it depends on the individual. I’m 8 weeks post treatment .  The first week was hell , then from the second week it got better . My tastebuds started to return end of second week.  At times I felt I had a resident welder in my mouth.  The burn was awful. I even felt it in my ears  A sip of water would clear it. At 4 weeks I was eating yoghurt and watery oats, some egg  and crackers. Just a few teaspoons of oats at a time.

    As the weeks progressed I’ve added eggs on bread and trying meat and chicken. I find oatcakes, shortbread and biscuits in general the easiest to eat.  I have hard boiled eggs on hand to snack on during the day. My appetite is gone but that could be because of the mucous and Ensure which I use the Peg tube for as I can’t tolerate the smell or taste of the Ensure . Tea still tastes like fish and the only drink I enjoy is hot water with honey .  Learning to enjoy hot chocolate again but in small doses.

    I work closely with the specialist nurse, dietitian and speech therapist. We have a zoom meeting every two weeks and I follow their guidance .  Good luck. It does get better although feels like forever since I had an appetite

  • DesRoss Don't worry  It does get better eventually , Salt water and difalm worked for me. It is amazing how your taste buds can recover , I enjoy tea but it doesn't hit the spot the way it use to . All the Best stick with it Regards Minmax 

  • I’m so glad. I wish I had appetite because then I’m sure I’d eat a lot more. I’m sure that will come too 

  • Hi DesRoss

    Finished CRT treatment in June 2023....

    Eating was an unenjoyable task....little appetite....had to be done to maintain a healthy BMI....slowly but surely the pleasure has come back into eating...taste buds not nearly 100%....but improving every week....we are off to Montrose this evening for a chippy, black pudding or Haddock ....a few weeks ago this was out of the question.

    Take care

    Peter

  • Hi

     It’s not uncommon to have no appetite best advise I can give is forget about appetite. I adopted the mantra food is fuel and eat to live not live to eat. It took a good  6 month to fancy any food. Then it took another 12 months to put any weight on I was eating 2500 calories a day the slowly the weight crept back and the cream cakes had to stop. 
    youll getbtegte but it all takes time it’s a marathon not a sprint. 
    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help