problem eating.. 30ml fortisip 4 x a day enough ?

Thankyou, i am getting a bit concerned about radiotherapy as sin e joining this group yesterday, ive had a couple of replies from people that ha e had it and it hasnt done wonders for them, my worse fear is throat and breathing etc, i have panic attacks about throat things, so im just gonna try and keep pushing soft foods down and hope it gets better soon, scared of the future but so is everyone on here xxx

You have really been through it, I am glad that it is healing. Hopefully the new pain is just things healing. I haven’t had any surgery apart from a tonsillectomy when they biopsied my throat. My treatment plan was chemo radiation. I was diagnosed the middle of June last year and my treatment started on the 5th August. I had 6 weeks of treatment 5 sessions of chemotherapy and 30 sessions of radiotherapy. Should have been 6 chemo but I missed one when I was hospitalised for a week due to severe vomiting, I couldn’t even keep water down and was on a drip for 16 hours a day.  That was only after my second dose of chemo. They tried every combination of anti sickness drugs they have but none of them worked. In the end they kept me on steroids to get me through it, I suffered from nausea and vomiting all the way through and then for several weeks after.  Good luck today, hope all goes well. x

Have they said you will have radiotherapy? It may not be part of your treatment plan. At the end of the day, it may have given me some issues that have been a struggle at times, but I’m still here and live to fight another day. Even for me 5 1/2 months after treatment they say it’s early days, so for you it’s extremely early and lots will improve x

Hi

I wanted to let you know my own experience of radiotherapy incase it helped in any way.

I am 4 months post 30RT sessions and 2 chemo for squamous cell carcinoma, neck dissection and removal of neck lump and 2 affected lymphs. I too was worried about the RT as am slightly claustrophobic and have suffered from panic attacks in the past. Also having the neck surgery I was worried I wouldn't be able to swallow. I took a mild tranquiliser they prescribed, for my first session but later abandoned that idea as made me feel a bit groggy afterwards (that's maybe just me though). And, I can honestly say that the remaining 29 sessions were absolutely fine. They played music, or I hummed a tune in my head for the 7 minutes I was in there. I sipped water a lot during those weeks and added squash to keep my throat hydrated. I also used a facial sauna to steam inhale too. I found the whole experience quite reassuring bizzarly. My RT was only 3 weeks after my surgery, so I hope (although my diagnosis etc is different) that you can see we are all different and, you can get through this if you do have to have RT. Keeping my fingers crossed for you,

Tricia

Hi Tricia, 

How are you getting on with eating now? Can you eat most things? Most of the people I have met at my hospital who have had similar cancers seem to be able to eat better than I can. My speech therapist is really pleased with the improvement I have had, but I still feel really frustrated that there are so many things I can’t eat and that I still need to have a couple of the drinks to maintain my weight. 

Kay 

Oh wow that sounds alot nicer story than the other poor girls, what a horrible experience i was in a state last night thinking omg, as two of them it seemed their issues came from the radiotherapy, i just keep pushing bits of food down i.e soup, yogurts,weetabix and fortisips hopefully it will right itself,my daughter thinks some of it is anxiety from it doing it and now its not but feels like it is, im not convinced but we will see, ive never been weak mentaly in my self thats why im not convinced but then this op has knocke dme for 6 so who knows,i had the parotid gland removed,the right ear and 62 lymph nodes, the ear and gland nd 10 lympths were infected x

Hello Kay

I think it depends on  what was zapped, doseage and how long as to how you fair. I got to a stage where 4 weeks after last RT session, I got stuck in a rut foodwise and had to push myself. 4 months on, I can eat most things but, not enough of anything as saliva runs out. I still have at least 1 Fortisip a day (down from 2, but only in the last week) but I find it helps me mentally, as I don't panic so much about whether I have had enough calories that day or if I have had enough vitamins. In otherwords, the Fortisip is my mental building block that gives me confidence to add whatever food to. I also found that I can eat bread-Jacksons from Waitrose (toasted) with marmalade, but another bread I can't, so do experiment with different varities of things and I hope you will find loads that work. The only thing I haven't managed yet is fish, but then I did get haddock. Someone here mentioned that cod might be better. So it may be that everyone you speak to has just stumbled on the right wariety of the foodstuff that works for them. I do remind myself that I am still only a quarter way through my optimum tsatse/saliva range, so am doing ok. Also, get out and try foods, Tapas, Indian, Chinese are great for dipping in to various foods without taste fatigue from just one main dish.

Hope that helps.

Tricia

Thank you, I do keep trying things, but like you saliva is a problem and am also only 5 1/2 months post treatment, so a way to go yet. 

Well done Kay on trying new things.   As you say, it's still early days for you.

Please try not to compare yourself with how other people are doing.  We all react differently to treatment and repair at different rates.  In my experience what people find palatable and easier to swallow varies greatly too.

Keep up the good work.

Linda.x

Hi Tricia 

Baby  steps are the way to go , I am now 18 month post radiotherapy for tonsil cancer with several affected lymph nodes and now each day ian getting easier for me. I always had a problem with haddock it’s too meaty a fish for me , but cod ,flakes so much easier.Better with batter in or in a fish pie plenty of sauce.

i too for months could only eat a certain brand of white bread preferably toasted , but to give hope to everyone I managed a nice proper crust baguette lots of butter on it but huge progress compared to  this time last year. Re:the high calorie drinks I too have the odd one as a boost , maybe we’ve gone out for food and it’s not been a success so a Ensure give s me a boost of quick calories.A tip that may help ,for me if I don’t get enough to eat over a period of days I still flag  energy wise. so to everyone no matter where  you  are in treatment there’s is light at the end if the tunnel Just keep plugging away at it.One last thing cheese on toast or mashed avocado on toast with poached egg quick easy  nutritional and my go to when all else fails Always worth a try.

Hazel x