Completely Rubbish.
Zoffiel
Member Posts: 3,374 ✭
in Day to day
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.
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Comments
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I wish I could do something useful. This is very crappy, you do not deserve it, you have done all the things asked of you (revolting as they may be) and a bit of fair would be good. Is anything at all being suggested? I always think best not to make decisions when you are feeling down (or angry, or generally pissed off, no matter how good the justification) but you need something to make you feel better, not others.1
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Well that is just the pits!
Is this gluten sensitivity only until your body rids itself of all the residual from treatment or is it a permanent feature?
I agree with @Afraser when you are down in the dumps like you are at present it is not a time to be making decisions!
Nothing is ever a waste of time it is about finding what works! I hope something that works is offered to you shortly so you can get yourself into a rhythm of who you want to be!
BTW just read that anemia is a symptom of celiac and a symptom of cancer - BC just keeps giving
Take care xx
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Hi, please don't let bc get the better of you, dont give into it. I know its very hard to go thru this journey..Don't give up.
Get more advice from experts who can help and assist you, surely there are experts that can...Try and try again
:)
Take care xxx0 -
Oh @Zoffiel what a sh*tload of crap this is for you .... Hugs
Can I ask why vegetables and protein are you enemies? I get the lactose intolerance stuff ....
My gut is not the same since Chemo, I can be fine for a few weeks then wham gastro ... I have had uppers and downers to check NOTHING, I cant keep Iron in my system to the point of infusions.
is there a natural way to heal your gut?
Can you have some Vegetable juices/fruit juices freshly squeezed so you are getting the nutrients?
I am sorry this is happening for you. Would be nice to have a Magic wand but we dont have that.
Hugs and energy
xoxo
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I've got nothing really to add except perhaps an urgent dietitian consult. They might be able to assist with diet. I still have trouble with milk and acidic fruit since chemo. Have you dropped a lot of weight recently? Sudden weight loss can increase liver enzymes as it has to process what's released from the fat cells. The elevated levels can impact on appetite. I had this at the beginning of my rapid weight loss and as I was able to add in more meat and fat and it settled just fine. Hope you are feeling less down soon. Kath x0
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Sorry about the pity party. Logically things should look up in the next few weeks as I recover from the chemo. It's been really hard this time.
My disease has never really made me ill, but this treatment sure has. I can't believe how debilitated I am--now the site from the last surgery has gone all stiff and weird. Considering it used to have a walloping great tumour in the middle of it, this is not welcome news. Everything aches and I keep getting the wobbles, which makes me nervous about going anywhere or doing anything. I have never, ever, asked anyone to monitor me but now my life is like a bad spy movie with people sneaking around making sure I'm ok while trying not to be too obvious about it. Think Get Smart. 'Oh, Kelly, fancy finding you here hiding behind a garbage bin.'
The mission is to try to avoid ending up on a drip to correct the multiple deficiencies I'm developing. Yeah, I know, that may be going to happen anyway.
Thanks for the support. Marg2 -
Hi Zoffiel hope gut problems improve
Sounds like you your digestive ezymes have taken a holiday
some of these old fashioned recipes are the best
have you tried apple sauce..high in pectin cook with little water add butter and little sugar
Serve with yoghurt
Mashed bananas
Cooked pears
Creamed rice cook with little sugar and milk add vanilla serve with icecream
Whhip egg white serve with cold cooked apples
Home cooked chicken soup with fresh vegetables celery carrot potato ...start with strained liquid
All best B1 -
The thing is even the smell of food makes my gut churn. I keep getting lots of helpful suggestions, but the problem isn't knowledge, it's my inability to digest what I am eating. I hate my toilet. Im scared of my toilet. When this is done I'm going to unstick it from the floor, drag it into the back paddock and plant a really nasty cactus in it. That would be suitably symbolic. Then go and buy myself a nice non threatening, friendly dunny that doesn't make me sweat at the sight of it2
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I haven't lost much weight, Kath. Just heaps of condition. My bum is as flat as a pancake and I'm all flabby but have only dropped about 4 kgs, which isn't much on my frame. I'm having more tests next week. If I can stop grizzling for long enough.1
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Marg, @Zoffiel you have every right to whinge moan and have a temper tantrum......
I love the idea of the dunny with cactus that would be good symbolic gesture.....
could you try say a few drops of essential oil blended with say almond oil on your upper lip prior to cooking or eating to remove the smell....
hugs and energy and tissues if you want to cry....
Alice xox
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Thinking of you Marg0
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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 4 -
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.2
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Just to keep the theme going - sorry if this is a bad post, I am lousy at attaching pictures.
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