Hi again
I've reached the dizzying six week mark, and looking back I've come a fair way, but there's still a long way to go. The looking back helps me a lot.
Since my last update (at 3 weeks) I had an SLT/dietician review on the phone and they made it super clear that I should prioritise eating and drinking and get off the peg. I found it quite daunting but went for it and was really pleased with the speed at which I could move from yoghurt and custard to rice pudding and much lumpier textures.
So some successes: l'm now eating three 'meals' a day - usually soggy Weetabix for breakfast, and something stewy or soupy with a dessert for lunch and dinner. I found the Little Dishes range of toddler TV dinners very edible (small portions, small chunks, very moist, minimal seasoning). Yesterday, at a family 'do' I managed some pulled pork and apple sauce, followed by tiramisu and trifle (without the fruit - too many bits in the berries!) - best meal yet!
I'm monitoring my weight and topping up with fortisips - usually 2/3 a day depending on how much I've managed to eat. I can't drink them yet, so still using the peg, but only for those. I'm going to ask if I can switch to the compact ones as they might be more manageable (although my issue is not just the quantity, but also the nasty taste). I tried Huel before I started treatment but it was too grainy for my tastes even pre RT.
One thing I'm struggling with is pain in the mouth and throat. It seemed to get worse once I started to eat more. I've also had days recently when things have felt more swollen and inflamed than previously. I'm using pain relief and mouthwashes religiously - saline, difflam and lidocaine - but it gets very painful indeed and makes eating difficult and very slow.
Is this newer pain and swelling to be expected? My GP says yes. Should I take a step back and revert to the purees etc for a while? I think my swallow mechanism is fine, but it's just so painful!
Btw my GP has been super helpful - I would recommend anyone in early recovery gets support in this way. I went there initially to get top up prescriptions and I now go fortnightly.
Thanks for reading my ramblings, and for sharing your insights
Polly
Is this newer pain and swelling to be expected? My GP says yes. Should I take a step back and revert to the purees etc for a while? I think my swallow mechanism is fine, but it's just so painful!
Yes, absolutely. As for taking a step back? I’d just up the pain relief
I used a sip of morphine swished then slowly swallowed
Mind you, I was on morphine till 12 weeks. I think you’re doing brilliantly.
Hi Jako
Initially nothing tasted of anything, such a disappointment. Then most things tasted strange, but the last week or so I haven't had too many nasty surprises. I have found that if I keep going back to foods that taste odd, the flavour gets more normal.
Some stuff I tolerated well I've gone right off - scrambled eggs unfortunately were an absolute staple but now I can't bear them. Hoping they'll be ok again soon.
Have you found any food that causes more pain? I was expecting tomatoey things to sting but they've been no worse than anything else.
I haven't been able to drink tea yet, I miss it a lot, but the milk in it tastes funny. I can cope with it in Weetabix no problem, and also semolina and jam - blast from the past but it goes down a treat!
Interested in hearing what things you are eating too.
Polly
Hi Polly,
I’ve been ok with eating tomatoes but I really don’t like the taste of ketchup. Most things are starting to taste more normal but it seems to be somewhat weaker. I’m hoping that improves.
Anything spicy is a big no no which is frustrating as I love spicy food. This last week I’ve been able to eat sandwiches and pizza which I’m pleased with and my appetite has improved massively. I’ve been eating a lot of cream cakes too to try and put some weight back on as I’ve lost 3 stone.
Sounds like you're doing brilliantly! I haven't even tried bread yet.
It's funny how appetite and taste are so closely linked, I love my food but it's a real struggle to finish what's on the plate now.
You're right about things tasting weak. I find myself adding sugar to things to make them taste better.
I'm looking at to some spice too - I used cumin and coriander in something last week and that was ok, but I can't cope with garlic even if it's too strong.
Happy eating!
Week 12 post treatment and cucumber was such a disappointment. I loved it but now it tastes really yuck. Blackberry and apple jam I loved. I had some on toast for lunch. It just tasted salty and sharp. Im really having to force anything down. I really don't want to eat or drink anything. Now cheesy puffs and you are talking even if they do gum up my remaining teeth. lol
Toast! That gives me hope
I️ made stewed apple and it tasted fine to others but I had to add several extra spoons of sugar to cope with it. You wouldn't expect to do that with jam though!
I've just tried tuna and pasta bake and it brought tears to my eyes so I've retreated with a bowl of semolina pudding
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