A Space for Mucosal Melanoma Caregivers
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addicts
We went to the mountains for a few days. It was nice. The weather and scenery was outstanding. We did a bit of letting go of past hurts and disappointments. I wrote a note to the people who have hurt me outlining how their judgement has affected me. I ended each note with a positive
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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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more again
Amy was hospitalized for 8 days. Had surgery on right kidney tube and she’s still recovering. A fistula was discovered and we are waiting for a surgeon to return from holiday. He does robotic surgery and might be able to fix the leak. Her back pain has been very uncomfortable and worrisome. The nurse has
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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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Scanxiety is real
If you’re a cancer patient, survivor or caregiver you’ll be very aware of scanxiety. Every new procedure, scan or doctor visit can bring it on. It’s the unknown that rocks us off our tenuous balance beam. What will they say? What happens next? How will we cope? Scanxiety is so strong today. Surgery is tomorrow
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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
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Aloneness vs loneliness
I’m alone and I’m lonely. In my aloneness I’m getting some stuff done that I’ve been too busy or tired to do. That is wonderful. In my loneliness I find myself worrying about the past and the future. Will we ever get to travel? Will the cancer recur for the umpteenth time? We have an
Rainbows and Black Unicorns 