It’s been nearly six weeks since I started my new medication Cholestyramine http://en.wikipedia.org/wiki/Cholestyramine
My last blog post explained how I’d been handed back some freedom and felt like I’d turned a corner.
So, where am I now? Well, after a meeting with Mr Surgeon last week we had a general review of where I am and how I’m feeling. Everything is OK. Bloods are all OK and tumour markers are as they should be. Nine months since my first post op CT scan and I’m still in the clear. Next month will be the one year anniversary of when I had my first operation. The operation where the cancer was removed along with my rectum.
The weekend before I saw Mr Surgeon for my review I had quite an experience. The medication was working. Or at least it was until Friday. I then spent most of the weekend feeling lilke I’d been dragged backwards. I couldn’t quite put my finger on it. Even though I wasn’t running for the toilet like I used to, I felt like someone had poured acid straight through me and my body wasn’t entertaining it. It always seems to be a lot worse at night too. Fun.
I explained what was happening and went through what I’d been eating. Not much at all if I’m honest. The days where I noticed I was in a bad way though were generally days where I relaxed a little. So, I might have had a bit of my mum’s (not spicy) curry (but had plenty of coconut milk in it), some olives, a baby quiche, some lovely focaccia bread. I won’t list it all, but basically it was nice. Oh and there were the few times I ate out…
But on the days where I ate tofu, chicken, broccoli, noodles, rice, mushrooms, onions, garlic, alpro soya desserts, bananas, to name a few, I was OK.
Mr Surgeon confirmed what I had been thinking, after a little internet research. I’ll be OK and the medication will do its job if I don’t eat a high fat diet. The more fat I eat the more bile I produce, which means I then have to get rid of it, via the toilet. Which hurts like hell.
Part of me is OK with it. It’s one of those things. I’ll adapt. Someone said to me the other day “small price to pay” – I wondered why I flinched a little at that comment. Why it kept bothering me. It does bother me though. It bothers me because I have another reminder of when I had bowel cancer. Mr Surgeon can’t say how long I will have to live like this. It could be for life. My Oncologist has written a letter to me basically telling me she did everything she could during radiotherapy to prevent any damage (a possible cause) and hopes it’ll improve over time. Mr Surgeon said it could possibly be from everything that happened during and after surgery. We’ll never know, but between the three of us we’ve ended up leaving me feeling very different about food. In some ways I’m scared of it now. I’m scared of what it’ll do to me. I’m scared it’ll cause cancer and then I’m scared it’ll cause bile which I’ll have to then deal with. The foods I should be eating to keep cancer away are now foods that don’t agree with me. That in itself is a complete and utter mind f*ck – excuse my language, but this subject makes me sweary.
I can handle it when it’s just me. Cooking for myself. That’s easy. I’ll eat what works. I’ll just drool over the things I can’t have, or if I’m feeling brave and don’t mind being up all night I’ll have a couple of mouthfuls. It’s when I’m around other people. It’s like being with someone on a diet, a strict diet, that isn’t willing to have that “naughty” moment. Frustrating for everyone. Especially in restaurants. My mother is high up on the list of people to avoid at the moment, especially about my latest diet discovery. I’m often met with the following:
“Do you think you’ll ever eat with us again?”
Yes, I’d love to. Unfortunately you don’t seem to like cooking food from scratch and eating plenty of veg.
“Do you want some cake, oh sorry, you’re on that weirdo diet again”
It’s not a diet. Through choice.
“I bought you an Easter egg”
Well, I’ll pass it on to someone who can eat it.
“You were ill again in the night. You woke me up”
“Do you think you should speak to someone who knows more about your stomach problems”
Oh that’s right, my BOWEL surgeon hasn’t got a clue…
“I guess this is a great excuse for you to lose weight”
I don’t even respond to that.
I’m very aware I’ve just entered rant mode. I know I am incredibly lucky to be in the position I am. They got rid of my cancer. I can get on with things. I am though, a bit cross. It’s a big shift in lifestyle and at times frustrating. If I’m honest, I’m just really sick of having to think about food and what it does to me. I’d love nothing more than to read a menu or even a recipe and not dissect it to pieces and put it in my “if only” file.
So, that’s where I am. On the verge of entering a dangerously obsessive frame of mind over food.