Hello...hoping for some help

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Hi,

I've just joined the forum and I'm really hoping somebody can help me.  I was diagnosed with an Ameloblastic Carcinoma (T4N0M0) last year which was surgically removed in November.  I just finished a 6 week course of adjuvant RT on my right jaw and neck a couple of weeks ago (that's not much fun is it!). I've not been able to eat since about the end of week 2 and I've been pump fed overnight since then through my PEG tube. 

I'm trying to work out how to get back to eating again.  Everything tastes disgusting and makes me feel so sick.  I've tried a few mouthfuls of custard and jelly but I really can't cope with more than that.  I'm struggling to drink more than a cup of water/tea a day and have to syringe extras down my tube to stay hydrated.

How did everyone else get back to eating/drinking, how long did it take, when did the nausea stop, how do you deal with the thick saliva??

Sorry, so many questions.  I'm feeling a bit overwhelmed and I'm scared I might be stuck like this forever.

  • Hi welcome to,our small community   Radiotherapy takes time to recover from there’s no one size fits all. I was ng tube fed from end of week 3 to week 3 recovery. Then I orally sipped ensures and slowly introduced food starting with soft food for the next month or so poached eggs slip,down easily then added smashed avocado in well buttered toast  yes toast far easier  than bread, crumpets as well

    . But I took food is fuel attitude ni pleasure was derived from food for a good 6 months no appetite either it was a case if keep in top of pain killer s to start with a lot of calories came from ensures .some days it’s 2 steps forward one  step back it’s all normal. Think nursery food and smaller portions I was on around 6 a day , smoothies with extra calories eg peanut butter added are good trifles ice cream mac and cheese out if a tin to start with   my blog below might help my cancer was tonsil so different from yours. 
    water yiu need z2-3 litres mist if mine to start with  went via tube. Then I had to sip it try through a straw , it is important to be hydrated as well . I found a notebook to write down my water intake and calorie intake helped keep on top of it. 
    read these as well 

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
    https://www.yumpu.com/en/document/view/66263025/cookbook-by-andrew-gaylor-head-and-neck-cancer-survivor-2022

    Hazel x

    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  

  • Thank you Hazel.

    Thanks for the links, I'll take a read.

    I need to try to eat/drink more regularly.  I'm lucky if I manage once or twice a day at the moment.  Everything else goes down my tube. Thats not going to get me to a place where i can have my PEG tube out is it!  Its so difficult isn't it when your so exhausted and you have absolutely no thirst or appetite.  It's like being force fed.

    I was such a foodie before all of this.  I'll be honest, I never thought it would be this hard.  I'll try to take each day as it comes and make more of an effort to take little bits of food/drink more regularly.  Hopefully I'll see small improvements in the weeks to come.

    G_W x

  • I found slowly slowly sone days better than others. Sometimes we all want to run but it’s a case of marathon not a sprint. The treatment s brutal but it needs to get rid of csncef in an area we use every day we eat talk breath in fact everything with our mouths and throat. You’ll get there we all do. Now at almost 6 years post treatment theres very little I can’t eat. Mainly spicy for me is a no no 

    Hazel x

    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  

  • Hello Gentle-Whisper.  First of all, congratulations on finishing your RT.  No, it certainly isn’t fun.  I’m about 3 months ahead of you. My tumour was at the back of my tongue, with a secondary in the lymph node. I had adjuvant RT for 5 weeks following surgery.  Like you I was tube feeding from about week 2.

     I think you are doing really well to be pushing yourself to eat only 2 weeks after finishing treatment. It took me over double that to start weaning my way off the dreaded tube. Water was a real problem. This will sound daft, but it felt just too ‘thin’ and seemed always to want to rise up the back of my nose. My dietitian gave me some thickening powder to use with it.  This worked up to a point, but drinking dilute tapwater paste (remember that?) was a tad unappetising.  Perhaps counter intuitively I find it easier to gulp swallow liquids rather than sip them.  I found slightly thicker drinks such as cocoa and cappuccino much easier.  Smoothies, as long as they were not too acidic were good, as was soup - thick, blended and not too hot.  I also found bananas went down well.

    I really sympathise over the foul taste and the thick saliva.  I did find that the saliva issue was eased to some extent by staying well hydrated…I used the tube to do this. I found that both problems went away of their own accord.  After the foul taste receded, it was replaced for me with pretty much no taste which also has its challenges.  Gradually I am able to taste some things and am hopeful that something approaching normality will return in time.
    I am still not back to normal with respect to eating. I had the tube out a couple of weeks ago.  I may have jumped the gun a bit. I’m managing small portions of solid food…carbohydrates are a problem..it’s an issue of texture…and am topping up with fortified smoothies.  I find that sipping water while eating, to substitute for lacking saliva, helps.  But things are getting better and a lot easier. I’m looking forward to the day when I can genuinely enjoy a meal.

    I fully empathise with your fears that you might be stuck forever.  I went through exactly that.  But there really is light at the end of the tunnel.  It just all takes time. I didn’t find that forcing the issue helped me. All it did was to emphasise the role of food as ‘the enemy’ to be fought with.  Once I resigned myself to pacing myself and taking things gently, it became easier.

    Good luck!

    Liz

  • Hi Gentle Whisper

    I found when I had the NG tube in when I was in hospital that I did not feel hungry as the supplement going in was filling me up. Consequently I did not feel like eating. I found that cutting back the amount of supplement going in and eating first made a difference otherwise it was like being force fed.

    Little steps at a time. Make a deal with yourself to eat a few mouthfuls regularly and you will then be able to eventually build on this. You will get there.

    Lyn

    Sophie66

  • Thank you Liz,

    That makes me feel so much better and your right, perhaps I am creating a rod for my own back because I certainly feel as though food is the 'enemy' at the moment.  

    I didnt realise it would be this difficult after treatment.  In my head, the side effects would wear off pretty quickly and I'd be back eating and drinking normally within weeks, back to going our with friends for meals and my tube would be out so I can go open water swimming again (which is the only thing that helps my pain from previous unrelated medical issues).  It seems that I need to reset my recovery timeline in my head and give myself a bit of a break.  

    Thanks again x

  • Hi Lyn,

    I too had a mandibulectomy on the right side.  It was very odd starting to eat again after the surgery but at least I was actually hungry and could taste the food then.

    I wonder whether my night feeds are making me feel full all the time.  I'm only on 1500 calories overnight which is below what my dieticians have recommended but I'm putting weight on so I'm obviously not using all of the calories.  Maybe I should start cutting down slightly to see if that helps with my appetite??  

    I'm seeing my CNS team in a couple of weeks so if I'm still no further forwards, I'll ask them.

    Thanks again x

  • Hi Gentle Whisperer

    It is great that you are putting weight on so you must be getting enough calories. I did not have a feeding tube when I went home only when I was in hospital after my mandibulectomy. Consequently I found it a bit of a struggle to put on weight for ages. I also did not have a feeding tube during radiotherapy as I was not offered one and ended up losing 10k.g. Food did taste terrible for a while but it did improve over time so initially eating is not for enjoyment just to get the calories in.

    It does take quite a while to make progress so patience is the key. It is definitely early days since the completion of your radiotherapy but things do improve with time. Be kind to yourself and don't try to rush the process.

    Lyn

    x

    Sophie66

  • Hi Gentle_ Whisper

    T2N1M0 HPV16+ tonsil cancer ....Finished Chemoradio June 2023

    I was PEG pump fed until late August....then started with very small meals, mince and mash...mac and cheese....scrambled eggs....no taste to any of it...and supplemented with Ensure 2cal....from late September I gradually built up to half portions....then full portions....taste returned bit by bit now about 70%.. late November eating chippy food and mild curries...going out for lunch regularly....going to Tenerife in 2 weeks (was also in Canaries Oct/Nov).

    Thick saliva?....plenty of Caphosol, Biotene and Difflam ....Nausea was a real problem at first but improved greatly 3 months post CRT...long hard road but things do get better..

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

    Take care and best of luck

    Peter

  • Thank Peter,

    I'm glad things have improved for you and that you are able to enjoy holidays and food again.  

    Thank you for the advice. x