Tag: melanoma caregivers
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not coping
The grief is palatable. Email from urologist said he wanted to wait and possibly never do surgery. He would try removing nephrostomy tube and doing a different procedure but even that sounds questionable. It’s one thing to wait for something that would hopefully make life easier but now it feels like this is as good…
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the wheels have come off
Three surgeons agreed surgery is very risky. Oncologist, urologist and plastic surgeon all agreed she needs surgery but is it too risky? Right now Amy has a ostomy bag for urine and one for poop. She also has a tube coming out of her back to drain urine into a bag worn around her ankle.…
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again
Soooo…waiting again. We’re waiting for appt with two surgeons. That will happen in 2 days and the anxiety has exploded. This time we will discuss how to close the fistula. It sounds like it should be a quick and easy surgery but I’m guessing it’ll be slightly more complicated. Because we don’t know what to…
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anger
Why today? I feel so much anger and resentment from things that have happened years ago. Why does it pop up seemingly out of nowhere? Like the person I asked to do a Costco during Covid. We were over our heads with cancer stuff and I thought she won’t mind. She was so angry when…
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too much anger
Today, I’m feeling very sad. I get no support anymore. No one has any idea what life is like for us. It’s been months since anyone asked me about me. I mean really asked me. Not, “how are ya”, crap where they expect me me to say “fine”. I’m not fine. I’m not even ok.…
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and here we go again
I’ve been absent for several days because I’ve been busy dealing with one crisis after another. September 8, Amy’s temperature spiked at 38.2. Off we went to the hospital at 6pm. We waited for 16 hours to be told the the Ctscan was off, she has an infection and they were going to admit her.…
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its far from over
It seems like people have gotten back to their regular lives and have forgotten about us and our needs. Do I blame them? No. I’m sure I’ve done the same. We can only hold so much angst. If something is has to go it’s going to be cancer patient and caregiver support so they can…
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surgery update
Amy’s minor kidney surgery went well. No complications afterwards. There was a small temperature spike but that resolved itself. Yeah! Now, we just wait until the antibiotics cease to make sure no infections grow. I’m almost feeling like we might be able to make some plans going forward. Our anniversary is at the end of…
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Upcoming surgery
Caregivers experience of stress related to upcoming tests or surgery, is very real. Amy will be having a minor surgery in 2 days. It’s a kidney stent being inserted to keep the tubes from collapsing. It’s not a big deal but last time a whole chain reaction of infection leading to sepsis started from this…
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How to support
Most people think sending flowers is the only way to show support. They follow that up with “ call if you need anything”. I’m here to offer some other ideas. Very few of us will ask for help. It’s just uncomfortable and some of us have followed the therapeutic idea of asking for what you…
Rainbows and Black Unicorns 