A Space for Mucosal Melanoma
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sad…
some days it all catches up with me and I get sad. today I’m sad and mad about the times people have crushed my spirit by being critical or judgemental of me. By the lack of respecting my boundaries. By the losses. Like the time I asked if I could crash at someone’s house then…
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what can i say?
Amy has yet again another infection. Surgeon returned her call at 830pm. Ordered more drugs and admitted the surgery from last week won’t solve the infection issue. It’s outta his wheelhouse to fix it. sigh…big sigh… Monday we meet with oncology surgeons to discuss options. They will likely need to take healthy tissue from her…
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This is who we are
Carers are not hero’s. We don’t have magical powers. We don’t have a wand but we wish we did.We cry. We shake. We get overwhelmed. We worry…oh so much. We have feelings that get hurt. We get abandoned by people who think we should act differently. We are afraid. We are lonely. We are stunned…
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im sorry
im sorry I can’t be more positive. im sorry I can’t be more resilient. im sorry I’m so scared of the future. im sorry I set boundaries that you find hard to respect. im sorry I’m a challenge for you to understand. im sorry my life has had such a terrible impact on your life.…
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have the wheels come off again?
I don’t know how she copes. I don’t know how she keeps going. Wednesday she had surgery to replace her ureter stent with a bigger one. Surgeon said he lasered something but he lost me. 48 hrs later she’s showing all the signs of infection except she’s on antibiotics now. She’s cold and shivery, her…
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another PRE-SURGERY day
And the anxiety is off the charts. I got some post op stuff organized like food and made sure things are charged. We had an updated convo regarding death, money and wishes and hopes for after recovery looking towards summer. It’s always so hard. I’m not driving her tomorrow and don’t know how I would…
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and again???
My prediction that the infection would go away but return in 2 days was accurate. Two days after antibiotics stopped Amy was hit with pain and a smell that is truly indescribable. The infection had returned but this time it was a new one and a bad one. Something to do with a pneumonia type…
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a death
A woman we know well died yesterday. Colon cancer. She was a musical director for a choir we were involved with. She wasn’t supposed to die. It happened very fast once they realised chemo wasn’t working. It’s affected me greatly because her bowel was removed and she had a nephrostomy just like Amy. Sad, so sad.…
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A month later…
Christmas was ok. Infection was gone and the mountains were awesome. We had a nice dinner with family and it was worth going. By the time we got home Amy had another infection. That got treated and then a new one developed. Omg it’s never ending. Friday she spent all afternoon in urgent care. They…
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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…
Rainbows and Black Unicorns 