A Space for Mucosal Melanoma Caregivers
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Ongoing
Still angry. I hate feeling this way. I’m getting triggered over the smallest things. Amy’s capped off tube was causing her pain. Probably urine backing up so she added the leg bag. It’s not working 100% but it’s ok. nurse comes this aft to change dressing and patch her up for Christmas. Hopefully we get
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crisis pt 2
After a weekend of uncertainty her bag started to drain. Yay! She wasn’t feeling the greatest but not sick enough to go to emerg. Hospital did arrange for her tubes to be changed today but rather than a leg bag they capped the tubes so it’s now totally flowing into her urostomy. Fingers crossed that
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anger
Do you ever get angry? Do you get mad? Our society really frowns on any expression of anger even though it’s healthy. Of course, it can’t be free flowing and you can’t take it out on innocents so how do you show it? When is it allowed to be expressed and how. I’m in no
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crisis pt1
It all started with two infections. Drugs weren’t working well enough to get rid of the bacteria. She smelled. Dr google says it smells like ammonia but it was more vile than that. It was offensive and I kept candles burning all the time. The more days this went on the more stressed I got.
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movie
There’s are new movie on Netflix called “leave the world behind”. Can’t comment on the movie cuz we haven’t finished it. But Julia Robert’s speaks a line in the first 2 minutes that made me laugh, “ I hate people”. Yup, me too! I don’t want to be like this but gawd I’m so tired
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i thought i’d be better
Nope, still mad at people’s insensitivity. I get it. I truly understand why people say stupid things about being positive blah, blah, blah. Right now though, it’s making me angry and I have no patience so it’s better if I just ignore them. Amy got drugs today to deal with infection. Symptoms are bothersome like
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angry?
Is it wrong to be angry with your partner that you’re caregiving for? I’ve been angry all day since Amy announced she had a sore lower back which means she has another infection. Nurse came to collect urine and test it but we both know it’s an infection. Hospital called to book another ctscan, nephrostomy
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fed up!
I wasn’t having the greatest day then it got worse! How does that happen? Amy has a sore lower back. Sure sign of yet another bloody infection. She’s down and frustrated. She shopping on line. I’m huffing and puffing and clenching my jaw. Latest round of antibiotics ended just 2 days ago. Here we go
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more surgery
Met with new surgeon today. He will attempt to insert a large stent into her ureter to see if that will help it stay open thereby eliminating the need for nephrostomy tube and urine bag she wears around her ankle. That’s the goal. No more tubes coming out of her back. It’s general anesthetic but
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the same
Life is still the same. Amy’s still fighting infections and my anxiety is controlling my life. Amy looks green, her urostomy bag is noisy sounding like a waterfall at times and it smells. Antibiotics? Probably the cause.Me…I hear all the noises and worry that this isn’t normal or healthy. She refuses to ask anyone about
Rainbows and Black Unicorns 