Hello everyone.
Week 5 and food is now our focus.
Dietician is pushing to have my hubby's peg taken out.
So we are on a mission, I think he was taken a back at first with this sudden push. Probably because he is only just feeling alittle better and the pain is under control now.
With just paracetamol taken upto 4x a day, plus the throat spray (xylocaine) when needed, we know this is very good for week 5. However talking more than a few words here and there and also swallowing still leave a very painful throat afterwards.
Food wise, taste buds are responding incredibly well, even the oncologist said this is quick.
We've obviously tried various drinks, the fav being orange and pineapple. Latte is good too.
Soups are easy but still only few tablespoons of anything in one go due to pain afterwards. So grazing little and often. Beginning of the week was the odd bit of egg, couple of spoonfuls of yoghurt, custards and soup. Now we are working our way through veg, sweet potatoes (couple slices) tomatoes, even some lettuce with dressing, he could taste. Tried a few small pieces of sausage yesterday. Today we will introduce chicken.
Pasta bread and potatoes taste like cardboard.
To our complete delight a pint of Wainwright's was enjoyed in the Lakes last week. With increased taste to enjoy it. That was a special moments.
Amazing how such simple things bring such joy.
Another was the 2nd (1 kg) weight gain last week. I was delighted for him. Simple thing but meant so much to us.
Eating is still causing alot of pain, which is hindering progress in terms of calories etc, hubby is understandably reluctant to up his pain meds having come off them.. so using paracetamol and mouth spray seems to be the determined stance.
Any other ideas would be appreciated if you've tried anything else to help.. we know it's still early doors regarding healing.
We won't see oncologist again now he's sacked us, dietician is in 3 weeks she wants to look into booking the PEG being removed. (I understand this is ultimately my husbands call) The appointment can take upto 6 weeks so there is some extra time there.
Anyone reading this who is pre treatment, if you are offered a PEG get it fitted. 100% it made treatment easier and recovery as we didn't need to worry about calories and weight too much. You've enough to be focused upon.
Love to everyone
Gail x
Good Morning Gail
Thank you for sharing with us an update on how your husband is doing. It really helps those going through a similar journey to hear from others who share that journey. I am sure sharing about the PEG will help those who are just starting out on their treatment.
I can see food is the focus this week and it is great that he is having support from a dietician. You have asked about other ideas and it seems that you are both doing really well with attempting different food. I love that he was able to enjoy a pint. It's the simple things that can make a big difference. I am sorry that he is having some pain when eating and hope that as healing continues that this is got under control.
I will pop a link here with some info that may be of help
Tips for managing eating problems | Macmillan Cancer Support
Once again thank you for sharing an update and if there is anything else that either of you need please do ask.
Jane
Dietician is pushing to have my hubby's peg taken out.
I can remember how nervous I felt when my oncologist said it was time to take my NG tube out. Funnily enough I vomited it up the next day and pulled it out through my nose. ( sorry too much info) So I was suddenly on my own
Gail, he’s doing ok. Trust your instincts. Everything you are doing is right. It’s a question of finding the courage to try new stuff. Funnily enough I never lost my taste for a good ale
You should try Hawkshead’s place in the brewery yard in Stavely and The Watermill in Ings just outside Windermere. They brew their own. It used to be my local. .
Thanks for the link jane2511 But it’s just a little to generic for us here who are dealing with the pain of a burned mouth and throat and a loss of saliva.
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
No problem, I understand but thought worth a share. Sounds really unpleasant the burnt mouth and throat and saliva loss. I had some eating issues during chemo but not to that extent. Thanks for pointing it out
Sounds really unpleasant the burnt mouth and throat and saliva
It is excruciatingly painful. Most of us are on high doses of morphine for many weeks. There is a huge psychological and social impact too. Recovery in mind and body takes a long time.
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
