Forum Discussion
Completely Rubbish.
As I sit here literally sobbing into my gluten free pasta with butter I wonder how it all came to this.
It's like all my efforts to keep going for the last ten years were a complete waste of time. Trying to keep fit, keep on top of my job, rebuild my house, raise a decent human being--it all comes down to gut aches and insecurities in the end.
My blood work last time shows some crappy indicators that all is not well and my oncologist is starting to get agitated. My TMs are OK, it's the periferal stuff that shows I'm either malnourished or I'm not processing what I am eating which has both of us concerned. Sick woman's blood. The problem is I can't stand the pain of eating anything that might help address this. It's not nausea, the chemo has elevated my gluten sensitivity to a full blown intolerance and vegetables and protein are my enemies. There is no lining left on my gut. I'm down to eating basic starch, sugar and some dairy. Disgusting.
I know that I can't heal without the right nutrients and I'm terrified of sliding down the slope into heart disease and general disability. I'm just exhausted. I can't imagine being in a head space where I could get back to work. I'm going broke. And I know that at some stage in the not to distant future I will be dealing with yet another recurrence. How many times does one woman have to get that news?
Rad onc appointment and mapping next week. I'm seriously considering pulling out of it. I don't think I can afford the extra time off and it all seems a bit pointless anyway. I think I'm getting to the pointy end of the 'quality v quantity' decision making process and that stuffing around with low value treatment options because it makes other people feel better is not smart.
It's like all my efforts to keep going for the last ten years were a complete waste of time. Trying to keep fit, keep on top of my job, rebuild my house, raise a decent human being--it all comes down to gut aches and insecurities in the end.
My blood work last time shows some crappy indicators that all is not well and my oncologist is starting to get agitated. My TMs are OK, it's the periferal stuff that shows I'm either malnourished or I'm not processing what I am eating which has both of us concerned. Sick woman's blood. The problem is I can't stand the pain of eating anything that might help address this. It's not nausea, the chemo has elevated my gluten sensitivity to a full blown intolerance and vegetables and protein are my enemies. There is no lining left on my gut. I'm down to eating basic starch, sugar and some dairy. Disgusting.
I know that I can't heal without the right nutrients and I'm terrified of sliding down the slope into heart disease and general disability. I'm just exhausted. I can't imagine being in a head space where I could get back to work. I'm going broke. And I know that at some stage in the not to distant future I will be dealing with yet another recurrence. How many times does one woman have to get that news?
Rad onc appointment and mapping next week. I'm seriously considering pulling out of it. I don't think I can afford the extra time off and it all seems a bit pointless anyway. I think I'm getting to the pointy end of the 'quality v quantity' decision making process and that stuffing around with low value treatment options because it makes other people feel better is not smart.
21 Replies
- Marg! Goodness! I agree with you, my gut hasnt been the same since Chemo!! and the crap thing is...its not BC that made me ill in anyway its the treatments GRRRRR!!!! So I hear you, lots of great advice from all here, have you spoken with a Dietician about it? Never ending roller coaster and it absolutely spirals you into a black hole! I try eat healthy but I also have icecream, chocolate and a glass of wine if and when I want. I deny myself NOTHING and I DON'T BELIEVE LOL that any food contributes to this journey in any way. Your nutrients is a tough one as you are trying very hard, so sounds like need some specialist help to get you to a good place with your gut?? big hugs Melinda xo
- Sending hugs as I don't know what to say. Can't begin to imagine how you are feeling.
- Ha @afaser & @soldiercrab. I'm going to print that out:)
- Snap!! But you are much better at posting images Soldier Crab!!
- Here you go @Afraser I love it a Cactus Dunny !!
- There are trials going on now @Brenda5 but the only legal use of cannabis oil at the moment is restricted to children with a very limited range of conditions.
I take a cannabis and coconut oil infusion once a day which gives mean few hours respite. I'd take it more often but I'd be off my chop all the time which doesnt suit me. Why I can't just zone out for a couple of weeks I don't know, but I just cant bring myself to do it. OK, I'm a bit of a control freak. The version I take is an infusion, not a distillation and really helps. Great for the pain and he coconut oil is very helpful. I've had no nausea or constipation and very little diahorrea, just terrible cramps.
All this is a flow on from years of cranky guts, irritable bowel and food intolerance brought to a head by the chemo. I hope it will settle down but, realistically, normal wasn't great to start with. It's worse this round and I am so glad I am finished chemo. I couldn't face this again. Just to keep the theme going - sorry if this is a bad post, I am lousy at attaching pictures.
- @Zoffiel - This really sucks for you. I love the vision of the cactus dunny in the paddock. Keeping that humour alive is so important
- Marg, ask your doctor if he is up on the cannabis oil research and can prescribe it for you. I have a girl friend with Chrohns and her diet is extremely limited and often has vitamin injections to get by. Since she has been on the oil, the last few weeks, she is finding she can eat a little of the foods she previously couldn't touch without painful consequence and a carton of toilet paper.
- Hey Marg, Can you perhaps try the Fodmap diet to see if that helps settle your system down and then start adding foods back in. It's devastating when you feel that your whole life is ruled by this disease BUT you lovely are far far stronger than that. By all means be pissed off, vent, rage get it out of your system. Your lovelies are developing their own spy movie revolving around you not because they are bored shitless and want something to do but because they love and care for you (whether you feel you deserve it or not - you obviously do ;)). Wishing you strength to want to keep going and sending you huge hugs. Xx Cath
