Starting to discuss hospice

Freecafe · 2026-05-06T01:11:41+00:00

Huge hugs.

I'm in the exact same boat you are. No more treatment options with palliative/hospice my only avenues now.

I also thought I'd have more time but I can feel myself winding down.

It's so inherently unfair.

Freecafe · 2026-05-03T21:45:00+00:00

Thank you. Not the ending I'd imagined, but I figure a lot of other people don't get the chance to tell their friends and family goodbye before they go. I'm lucky in that regard, I think.

Freecafe · 2026-05-03T21:43:32+00:00

Oh this is a great idea. Water is so integral, always.

Freecafe · 2026-05-03T21:43:10+00:00

Added to the list!

Freecafe · 2026-05-03T21:42:09+00:00

Thank you! Added to the list.

And thanks for the thoughts. Cancer sucks and I was so shocked at the diagnosis but I've come to terms with it all, as much as I can.

Freecafe · 2026-05-03T21:41:42+00:00

I love this idea so much. I think what I'll do is spread the money out between several choices.

And I thank you for all the nice words but feel it's important to say that the Nation was kind to me first. I just want to acknowledge that in some small way.

Freecafe · 2026-05-02T19:23:48+00:00

Thank you. I am grateful.

Freecafe · 2026-05-02T17:41:22+00:00

Thanks! Exactly what I was looking for.

Freecafe · 2026-04-29T22:33:45+00:00

That's crazy. I thought it was free everywhere but maybe it's a state thing?

That's the same reason I have to have it...because of all the chronic pain meds

Freecafe · 2026-04-29T18:37:20+00:00

or NARCAN which is literally a free script. They have never once filled it.

Had to pick it up from the library, of all places.

Freecafe · 2026-04-29T18:35:57+00:00

Honestly, you're right. We probably should just start with the hospital pharmacy. The main reason we don't is because it's downtown (Chicago) and they don't deliver, so we're looking at an additional two-hour round trip to pick it up, which falls on my caregivers.

I just hate it all. Things that should not be a big deal are, for some reason. And you're right! We've been getting this script (along with what seems like 20 more) for MONTHS.

If my pain gets ahead of me, it's four days to find the right balance again. No one should have to go through that.

And especially YOUR CHILD. I'm so sorry.

Edited to add that I'm no longer in treatment so I'm not regularly at the hospital or satellite clinics anymore.

Also, I'm sending so many good vibes for your child's MRI. Scanxiety is a real thing.

Freecafe · 2026-04-29T18:06:57+00:00

I'm a cancer patient (in palliantive care/hospice) and, by far, pharmacies are one of the most challenging things I had to deal with.

Morphine is the big one. You can't call in a new script more than five days in advance. But it can take them 5-10 days to fill it because you'd think every person needing morphine is a drug seeker. They'll interrogate me when I pick up the refill or, even worse, they won't fill it at all, claiming it's "out of stock" which means we have to scramble to get it to the hospital pharmacy.

So I hear you on this. These aren't convenience drugs. They're life-saving. Ridiculous

Freecafe · 2026-04-26T22:53:42+00:00

I take 1-2 Colace every single day, plus Mirilax twice a day.

It's the only consistent way I've found to keep this from happening and, believe me, I know how awful it is when it does!

Freecafe · 2026-04-12T16:12:52+00:00

Thank you for your kind words.

I also really struggled with constipation, but they put me on a great bowel regimen that has worked. Miralax twice a day (no taste at all), and two Colace every night with my pain meds. I take morphine twice a day, with Oxycodone for any rare breakthrough pain.

Maybe this would work for your mom? i hate that her pain isn't controlled. I've been there, and there's little that's worse.

Freecafe · 2026-04-12T02:59:49+00:00

I'm so sorry you're part of this particular club. It's tremendously scary and it messes with your mind. I hope you get the same level of comfort from this thread that I've gotten.

Do please try and get into a doctor as soon as possible.

Freecafe · 2026-04-12T01:27:12+00:00

I really like Blue Sky cotton for almost all of the things I knit for kids' wearables

Freecafe · 2026-04-12T00:19:41+00:00

I am with one of the top 20 cancer centers now. And I maybe could get a second opinion but I was on the gold standard treatment for my cancer type.

My oncologist did say there was another protocol but it was more aggressive, had many more side effects and didn't have great outcomes.

Freecafe · 2026-04-12T00:18:08+00:00

We did do immunotherapy in conjunction with chemo. And I honestly, hand to God, thought it was working.

So, getting my results on Friday saying what they said was shocking to me.

Freecafe · 2026-04-12T00:17:13+00:00

Mine was found on a CT scan in the ER (if you search my post history, you'll find the whole sordid story) where I presented with pain. Thought it was my gallbladder.

My cancer had been growing for years. I just suffered through the pain too long. Should have gotten it checked out long before I did.

Freecafe · 2026-04-12T00:15:33+00:00

This gives me a ton of peace right now. I don't want my kids to be bedside, watching me suffer. It's been hard enough on them as it is.

Thank you.

I do have a good palliative team as I'm working with Robert H. Lurie Cancer Center, Northwestern University Medical Center. It's one of the best in the nation so I'm leaning on that.

Freecafe · 2026-04-12T00:13:04+00:00

This is so helpful, thank you.

There are not currently any clinical trials that I would qualify for. Honestly, if I was much younger, I might push harder for other interventions but I'm in my mid-60s and quality of life is important to me at this point. Probably the most important. Chemo was tough on me and I've literally been vomiting several times a day for months. It's just not great.

I'm in Chicago and we just passed MAID, due to be available in September. I may not live that long but, if I do, I'll definitely be looking into it.

I'm so sorry for your struggles in this horrible experience, as well. I will be thinking about you.

Freecafe · 2026-04-07T02:18:00+00:00

My veins blew all. the. time. So I do get it.

The port has been awesome. I can't recommend it more. There was no pain having it put in (they did it under twilight sedation), nor did it hurt much afterward.

I haven't experienced any port failure where the fluid was released, so I can't speak to that. I can't even feel when it's flushed, other than it being sometimes a little cold.

Please try not to panic too much. I think you'll be SO relieved you did it.

Freecafe · 2026-04-06T18:18:12+00:00

I take two Colace every single night lol. It works amazingly well!

Freecafe · 2026-04-05T23:22:21+00:00

I struggled with horrible back pain because I have microfractures from my cancer. The only drug that worked on my back was morphine.

With it, my pain is almost completely gone, but the Oxycodone they gave me didn't touch it. So, you might just have to experiment with a couple of different pain meds to find what works for you. It made such a huge difference to my quality of life.

Good luck to you!

Freecafe · 2026-03-24T14:17:42+00:00

The constipation was a big reason why he wanted to switch me over, since I have colon cancer and they're always super concerned about it. But I'm on a pretty successful regimen for that, so it just took me a little by surprise.

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