After almost seven years of living with his diagnosis, M is gone.
I thought we were ready. We weren’t.
Category: general health
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October 29, 2022 – The Word Hospice Carries a Lot of Baggage.
Because hospice comes with so much baggage I struggled with how to discuss it with M. Then I was lucky in that Dr. M had the new doctor in the clinic suggest it. I’m pretty sure Dr. M was motivated by never wanting to have to deal with M again, but however we got here, I’ll take it.
We met with the paperwork person Thursday, the nurse came Friday morning, they delivered a portable oxygen concentrater Friday afternoon, then today the pharmacy delivered the emergency pain comfort kit. M said if he’d known this would be the care level he’d have signed on months ago.
He’s still the healthiest sick person I know but we’re definitely seeing progression in pain levels, the struggle to keep weight on, and weaknesses. It’s good to know the support system is now in place if / when things get worse.
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September 29, 2022 – Amazingly, We’re Still Out Here
Just in case there’s a single soul out there wondering – M is still plodding along! Amost six an a half years.
He didn’t have his last CT scan that was supposed to happen in October 2021. Dr. M retired before it was supposed to happen. Then, the doctor’s office screwed up the insurance authorization. They forgot to submit the paperwork at all until two days before it was scheduled so it had to be cancelled. They said they’d get a new date once the authorization came in and call us back. Well, we got the authorization letter from insurance and never heard back from the office.
That was it for M. He said he was done. Doesn’t want a new dr, doesn’t want the scan, done.
His choice.
Then, at the beginning of last month he had his MRI scheduled with Dr L. He got sick 1/2 way through (before the contrast) and refused to finish the test and said that was it, never having another. Dr. L wasn’t as pleasant as he has been previously. “Nothing of concern as much as can be seen without contrast.” No further follow-up appointments discussed.
So that’s where we are (or aren’t) as far as tests. M is done with it all.
The pain is increasing, I see it in him continuously, and then especially hard hitting in spasms – one of the worst spots is right over where the known lung tumor is. We can only assume it is growing but without tests it’s impossible to really know.
He won’t complain or tell the doctor just how bad it is… His original palliative care doctor, Dr. M, treated him as if he was a drug seeking junkie when he’d try to explain all the pains, rather than someone with metastatic lung cancer with chemo-induced peripheral neuropathy.
Honestly, it’s disgusting that a palliative care doctor should exhibit such a lack of empathy for his patients with a terminal illness.
It has been better since he’s been seeing Dr. Y, he feels like she listens to what he says, but he still puts up a “it’s not that bad” front. Unfortunately, she’s leaving, and Dr. M is the actual head of that department.
I’ve considered seeing about switching him to a different palliative group but the other option geographically is an hour away & M doesn’t like that. (Currently it’s 45 minutes to the doctor & Dr. Y was letting him have televisits except the yearly requirement to come in for the urine drug test.)
I also wonder if he’d be eligible for hospice but don’t want to (or know how to) have that conversation with him: “Well ya know, it’s looking like you might not make it six months, so…”
My apologies, I know that’s crude but it’s where I am.
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March 14, 2021 – Just Out Here, in Isolation
Next Saturday, Shot #2
The Saturday after that? Lowe’s, in a mask. M has been a model in lockdown.
Then, during the week after that he has a CT scan & Dr K.
We’re almost at five full years!
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June 20, 2020 – Something Just Isn’t Right
Last Monday, M woke up really nauseous. This has happened a few times here and there over this journey but something felt different this time. I’m not sure what made if feel that way. He was really weak, cold & clammy, no fever… Dr. Google says heart attack. M swears he doesn’t have chest pains. Well, dear reader, we all know you don’t have to have chest pain to be having a heart attack.
I had to go to work. I was scared but, as I’ve said before, I can’t stay home every time M is sick. As an extra added stressor, due to some poor career choices in the past eight months, I have no available time off.
M never replied to my texts after lunch and I was getting concerned, but he did answer my call on the way home. Sounded weak as all hell. Tuesday, a small bit better, then a small improvement each day. Yesterday, Friday, he ate more than he’s eaten all week. This morning? Boom, back to how he was Monday.
Again, I don’t know what is making this feel different, but it does seem so. Nausea, weak, occasionally sweating & clammy, and he can’t sit for 30 seconds without nodding off. I got him to eat a little chicken noodle soup this evening and he fell asleep between spoonfuls.
I’ve told M my concerns. I’ve been pooh-pooh’d. And there it is. He’s an adult and I’m not his mother. He’ll let it get out of control bad before he’ll agree to be seen by a dr. It has been 15 years since his first heart attack. That one gave warning signs for at least a month that he refused to acknowledge.
Something just isn’t right.
(edited in July to note – the Dr. L appointment that was to happen in May? Postponed. M did not want to go into a hospital in the midst of the pandemic)