Third week of treatment

Hi Hazel

I'm going to be asking for something abit stronger this week.Find the co-codomol ok up to about 4pm then things get alot sorer.I'm choking through the night on the saliva and the coughing is very hard.I've got chemo this week which floored me in week one.Took 3 attempts to get anti sickness pills that worked.Thanks for all your advice.

Turi

Thanks Fab1,

At first I was angry with myself for using the peg so early but there's no point in making yourself even more miserable.What did you manage to eat at first after the treatment ?

Turi

Hi Turi

I am about 6 weeks ahead of you. Three weeks ago finished 6 weeks RT with chemo once a week.

For me I was using co-codamol by the end of week three and started adding a few mgs of morphine (Oramorph) an hour before meals the following (4th) week. For almost all of the RT I could eat and maintained my weight throughout with food and one fortisip a day the last week. By that last week I was using paracetamol 4x per day with 10 mg of morphine 6x per day. 

I was fine with the chemo until the last dose when I got a v strong metallic taste. Then, 6 days after the last chemo and 3 days after finishing  RT I spent 2 days in hospital with neutropenia getting iv antibiotics 4x per day. That was pretty much the bottom for me. By then I was feeding entirely with my RIG tube. 

That was 3 weeks ago. Since then slowly getting better. I eat three times a day - very little, and because I should not because I want to. Use the tube with fortisips for the rest of my nutrition. I could probably not use the tube, but it is quicker and easier than swallowing. Sometimes nap in the morning, always go to bed for 1.5h in the afternoon. I have energy to do things in the morning, but after lunch I sleep and watch tv. Throughout this whole thing I have walked a mile or two every day outside. 

For me, things certainly got more difficult after week 3 (and I was unlucky with the neutropenia). But at no stage was it awful and I feel I am now on the mend. It will continue getting better too, and I'll want to eat again at some stage:)

all the best

Hi Turi! 

When my mouth ulcers decided to go at last ....I started eating some puddings like chocolate mousse with cream, crème brûlée and caramel pudding....for some reasons I couldn't tolerate yogurts. I also had smooth porridge, semolina and dippy eggs (without the bread at first). I also had some homemade soups (avoiding tomatoes) to which I always added cream to try to put some weight back on. I made my own smoothies with fortisip, peanut butter, coconut milk or oat milk. At first I had to keep away from anything fruity. 

You are doing amazingly well. Be kind to yourself and if you try something but it doesn't taste nice or it hurts , don't force yourself and don't be harsh on yourself .You need to enjoy it. If it doesn't work now it will in a few weeks' time. I am still trying different ingredients/food and have a go at reintroducing some food I used to enjoy. Sometimes it works, sometimes it doesn't but I will keep on trying! 

Sending you loads of positive energy. 

Fab1

Hi Mike

You sound like you are getting there day by day.I get my dogs out every day still.Gone from 7-8miles a day to 2 .....not happy dogs.It's so good to get out and plod round the cut barley fields and passes the day.I feel like the weeks are passing quickly.In for chemo tonight overnight.Ward shut with covid but getting a wee room by myself so that's good.

Hope you go from strength to strength and I'm always interested in what folk are managing to eat after treatment.

Turi

HI Fab 1

I'm always keen to hear what people are going for food wise after treatment.How soon after treatment ended did you manage the foods you mentioned ?

Thanks for all the info,

Turi

Hi Turi

My treatment finished at the end of September last year. I had mouth ulcers therefore could not eat anything for a while and had to rely on my peg . By mid December they eased up and I was able to drink some fortisip. My tube was removed end of December and I started trying introducing food then. You will get there too. Take it slowly and be kind to yourself. 

All the very best.

Fab1

Hi Turi

I think I have been quite lucky. RT finished 4 weeks ago tomorrow. To give you an idea, yesterday I ate:

Breakfast: a weetabix with sugar and enough milk to make it soggy:)

Lunch. Chicken and mushroom soup. The chicken pieces are quite small - the big ones are very dry to chew. Half a nectarine. A little Cadbury Pot of Joy. 

Dinner. Pasta, frankfurter and cheese (this was my son's favourite meal when he was 7!). Ben and Jerry cookie dough.

I dont eat a lot of anything, and I dont enjoy much (or any) of it. I can't taste yet. But I do like texture.

I'm having 1-2 Forisips per day and very gently losing weight. I use the tube for that and water - mainly because it is easier and quicker. I can push 350 mL of water into my stomach much more quickly than I can drink a glass of water and if I dont there is a risk I dont drink enough.

Still very tired. 9 hours at night, 2 during the day. And still can't do much more than watch tv after lunchtime. 

Good for you with the dogs! keep it up:)

Best regards