A place to talk death and dying issues

Hi pajim - if I step back and look at the last six months of pain relief I'd have to laugh, I started on 2mg of dilaudid and didn't want to go up from there but I'll get into detail after the next paragraph that details my pain sources.

My liver capsule stretching had been and still is a major part of the pain but now my omentum tumours are spreading quickly and pressing and pushing on everything around my bowels, stomach, liver, well everything. Haven't have a CT for a few weeks, in fact no blood work since Doxil ended but this is what we are treating. I was told last week I have weeks to months but hey what does that really mean? I don't feel like I'm dying yet either, if anything the pain is sure reminding me I'm alive lol.

OK, my medications are at these doses as of yesterday: Fentanyl patch - 200mcg/h, changed every 48 hours. Dilaudid - 12mg by mouth at first sign of breakthrough pain which is averaging 3 times a day. If I don't catch the pain, as sometimes it comes on suddenly, averaging once a day, I take 6mg subcutaneous injection and 12mg by mouth every hour until pain is back under control. And last but not least 20mg of Prednisone daily. Next increase will be an "add on", probably Methadone.

Thanks for asking pajim, I am happy to share any part of this with you and anyone. In fact, I think I'd like to know others experience. Maybe this is too much detail but it feels good to get it off my chest.

Shetland - not a coward at all, these are hard times, I think is important to share. When things were going downhill I had so many questions but was scared to ask.

Jaycee - I'll have to have my DH figure out where the form is when he's home and maybe put it on the fridge when he gets out that rare time to pick up groceries.

Best wishes to all this evening, Maureen

I'm feeling better this evening, at least existentially. My MO e-mailed me this morning to ask how I was feeling then called me when he figured out I am having existential trouble.

We talked for nearly an hour. He has encouraged me to do the things that are important to me and disregard the rest. What's important to me may not be important to you. And vice-versa.

So if my priorities are to run my manuscript meeting on Thursdays that's what I should do. If you want to go and sit in the sunshine (should there be some) then that's what you should do. He also reinforced that there is no right or wrong answer.

It is his job and the palliative care service's job to make sure that I can do those things. From that point of view it was an odd discussion. I get the feeling that they are struggling with this too. Normally if one of their patients has a lot of symptoms or is having trouble they can put them in the hospital or a hospice or something and try to get it straightened out. Except that right now they can't. No visitors allowed at the hospital or the hospices. And they can't even SEE their patients in person. Must be very disconcerting for them.

Wow, Pam. Your MO sounds wonderful. Thank you for being so open with us and sharing your thoughts.

Tina

Pam- I’m glad you are having “good” days and visits from friends (at a distance). Hoping the sun is shining for you today!

Oh, no! This is terrible news. She was so resilient I can't believe she's gone. So smart and generous, with a fine sense of humor.

Words fail.

Thank you for letting us know, 50s girl.

Tina

Thank you 50sgirl. What I will remember is that Pam never lost her sense of humor and she lived her life ( I am thinking about all her travels).

She will be greatly missed on these threads. Pam (pajim) lived 7 years with metastatic breast cancer. She is my aspiration.

50sgirl: And how are you? Are you living your life?

I looked up her obit - what a full life! And her posts here were everything she was in the 'real world' too. Two lovely and strong ladies gone, just like that. Pajim made a few comments when I first joined that helped put things in perspective. I know she was struggling the last few months, but unless she made reference to a medical problem in particular, you would have never known. She will be missed.

This is a very comforting thread. I'm so sorry to read about Pam, but am happy she died the way she wanted to. I've been reading a book called Being Mortal. My husband and have talked about the potential end and how we would both want it. I'll be having this conversation with my dad and sister this summer. I hope and expect to have good years still to come, but I also want to have the conversation about how I want the end to be. For me, "to do everything possible" to keep me alive at all costs would be a nightmare, not a blessing.

Do any of you keep journals? I'd like to, but I have no idea what to write or where to start. I'm just at the beginning of this mBC journey. I appreciate the honesty here.

Carol

This is what I will remember about Pajim.

Her last sentence to us was "LOL".

thank you Lynne- so sad to hear about Pam! Being mortal is a great book- about to re- read it.

Sunshine99- journals can be wonderful- find a notebook and pen that you love and just start writing. I like it best if I imagine no one else will read it

How are you, Lynne?

Today is the day a year ago I was officially diagnosed. It took eight months to start medication from the onset of my symptoms. Of course, it makes you wonder how many more years can I get? I just looked back on some of pajim’s posts. On the 16th of April she said she didn’t feel like she was dying, and she passed on the 29th. That’s what I think about the most, how will I know when I’m close? I am doing fine right now and am grateful I have no pain from this. I do believe at this point, I’m not close, but I do think about it now and then.

I also notice Maureen hasn’t been on here lately I hope she’s okay. And others.

Wow - so sorry to hear about Pam and Valerie. 😭 They were both great contributors to these threads. I enjoyed Pam’s way of explaining things and how much she shared of her feelings and honesty about what she wdealing with.

KBL, I wonder about the same things, how does one know? My primary care doctor told me last week that she talked to my MO and they determined I have 6 months to a year left and what do I want to do? 😳 I don’t even know what to do with that information.

I too am mourning the loss of Pam. She was an incredible individual who shared freely with a special mix of compassion and humor. May she rest well.

While BCO has been tremendously helpful, informative and a place of unparalleled support, I find it a struggle when we lose those we have come to know through various threads. I’ve been on this site for over three years now and have seen many of the old guard slip away. It’s never easy. (It’s particularly challenging when the voices simply go silent leaving us to wonder and secretly hope all is well with them.)

KBL, your question is one we all struggle with. It seems, for many, the tide can turn quickly. I Seem to spend an inordinate amount of time pondering this question as I continue to work full time. I am constantly trying to figure out when I should step away. I enjoy my work and the freedom that comes with a good pay cheque but will be seriously irritated if things suddenly go sideways and I have not given myself the freedom to enjoy the time I have left. But at the moment I am doing well and that is expected to continue so I carry on....

Sending everyone a virtual hug at this challenging time.

Will miss you big time, Pam and Valerie.

Wandering, maybe your primary care was encouraging you to make advance directives? Do you have them? DNR? I've seen a tendency lately for MO's to pass the difficult conversations along to primary cares. They are cowards when it comes talking about dying. Has your MO said anything about this? Why do they feel the need to beat around the bush? I like real honesty from doctors and never get it. Except my palliative care people. They are the best. Two hour visits. No bum's rush. So worth it. Can you find palliative care where you are?

It makes me so sad to lose Pam and Valerie. They were both so strong right til the end, and I am really going to miss their posts. Their family and friends are in my thoughts and I hope they can find some comfort and peace.

I'm sorry that I've been avoiding this thread lately because I'm usually an active poster here. Have been dealing with issues of my own and didn't want to detract from what they were going through, and sometimes it's hard to find the words to support others when you're dealing with your own issues, and I'm sorry for that. I developed polycythemia a couple months ago and that has been absolutely miserable, not to mention it could cause a heart attack or stroke at any minute until we can get it under control, MO thinks it may mean bone marrow involvement since we've ruled out all other causes. On top of that now it appears that my immune system is overreacting to Kadcyla and I may be headed toward a cytokine storm. Should know in the next few days if we're successful in getting my immune system not to overreact this time. I'm just focusing on keeping myself calm while we work through these things and try to get my body back on track.

I'm sorry that I've been so wrapped up in myself that I haven't done a job of supporting others.