Onward and upward ?

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Well it is almost 1 week since my last treatment and I am still not sure how I feel or what happens next. Not getting much sleep even with a sleeping pill but I am ok with that. Mouth feels like a gunk bin but I am able to enjoy a sip of tea or coffee with some semblance of taste which in itself is great   
My neck is really bad but I have the dressings and the cream so I’m sure it will start to heal soon 
   I must say, up until about 10 days ago actual food didn’t bother me but now it’s been all I can think about but I know it want go down. I am feeling weak and weary but right now the sun is shining so it’s a good day.  

Thank you all again for your help and support, I really appreciate it and would not have done it without you all xxx

Lillian xxx

  • At least you have an appetite Lilian which is great.  I couldn’t have cared less about food for six months. If I hadn’t been cooking for husband ……

    You sound pretty upbeat. You can at least experiment with some soft foods and indulge yourself in all those high calorie things that were always off limits. I didn’t put any weight in till around 18 months. I could eat anything. It was a bit of a shock when I did. 
    Time to refresh this article too? 
    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    Keep going Lilian. The only way is up HeartHeart

    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

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  • Hi Lillian have bern thinking about you. You sound upbeat which ys giid. Poached eggs are a good thing ti start with on well buttered toast as well. Toast is far easier than bread fir a giid whije. Strange but the toasting alters the texture makes it easier ok you might need a warm drink to wash it dien but give ur a try when you’re ready. Jaffa cakes dunked into tea ur coffee. Jellies custards ready break etc xx

    hugs Hazel well done xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Hazel does everyone struggle to start eating again, I am beginning to think it may be psychological on my part 

    Lillian 

    I have had a cold for 2 weeks and the last couple of days I have been running a fever and temperature. 
    I am taking soluble paracetamol but I am struggling to get even yogurt and semolina down. 
    I know that it will have to run its course but I have lost weight and I am concerned that if it doesn’t go away I will lose even more weight. I am literally drained and so weak and  I would be grateful for any advice. 

    Thankyou Lillian xx 

  • Hi Lillian, I'm sure most people struggle to eat after treatment, I know I did, I used my RIG for about 2 months after my treatment had finished, then slowly started to eat just small amounts of very soft foods. It's very hard to eat when it's the last thing you feel like doing, I remember it was several months before food tasted anything like it should have done. You are still at very early days in your recovery, it all takes time. Just try different things to eat, you will get there in the end.

    Regards Ray.  

  • Hi Lilian yes we do. I had my ng tine out eeek 3 of recovery but I was getting  at least 75% of my calories via ensure s leaving me Fred to try poached eggs custards jellies etc I very slowly gif to 50/50 but there’s no hard and fast rule. I used to have 6 small tea plates if diid spread throughout the day. Breakfast was and still is my favourite porridge with sliced banana Snd honey. Well buttered toast even now I prefer not to eat the crust. Think nursey diid. Potstuez mince n chicken gif mr were no no. Slow cooked land easiest meat of all. 
     pop u a few things to read. 

    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
    here for you. Excuse typing am out in my bike no reading glasses lol xc

    hugs H 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hello. I certainly struggled to eat again. I used my PEG from week 4 of treatment until several weeks post. I had to force myself to put any food into my mouth. It was definitely a mental aswell as physical struggle. It does get easier. Just keep trying different foods. 

  • I just looked back at the food diary I kept during the early weeks of recovery - creme caramel & soggy weetabix with full fat milk seem to have been my mainstays. 

  • Thanks so much for that info Hazel I will give some of it a try but the dry mouth is really getting worse which makes eating so much harder. 
    Lillian 

    I have had a cold for 2 weeks and the last couple of days I have been running a fever and temperature. 
    I am taking soluble paracetamol but I am struggling to get even yogurt and semolina down. 
    I know that it will have to run its course but I have lost weight and I am concerned that if it doesn’t go away I will lose even more weight. I am literally drained and so weak and  I would be grateful for any advice. 

    Thankyou Lillian xx 

  • Hi Lillian yes carry a water spray bottle with you to help. As for eating I always had a warm drink nr it weak peppermint  herbal tea lukewarm water or later on coffee to wash the food down. Or good old plain water. The spray bottle is a nes tip Dani and I picked up on a webinar recently. It makes mouth moist without washing away saliva. 
    I had auricular acupuncture which I had to pay for plus try chewing sugar free gum I used orbital in blue tubs still use it niw. I break pieces in half. Xyimelts at night as well 

    hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • Hi Hazel hope I’m not being a nuisance but I am still struggling with my eating and still losing weight.  I went for my first visit to my consultant last week and he said everything is going as expected and I am back in 4 weeks. They are trying to encourage me to eat more but what I try I can only manage a couple of spoonfuls. Is that normal or should I be managing more. I am feeling very tired and weak, and getting worried that I should be doing better. 
    Lillian

    I have had a cold for 2 weeks and the last couple of days I have been running a fever and temperature. 
    I am taking soluble paracetamol but I am struggling to get even yogurt and semolina down. 
    I know that it will have to run its course but I have lost weight and I am concerned that if it doesn’t go away I will lose even more weight. I am literally drained and so weak and  I would be grateful for any advice. 

    Thankyou Lillian xx