What I would have done differently if I would have known better
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Elicia, you have come to the right place; this is a good site. people on this site are living, breathing, loving fighters. I want to add my voice to those saying don’t second guess yourself! It was a temptation for me, too, but led nowhere. I don’t think there’s any validity to second-guessing at all, it’s just a little mental habit that is not needed at this time! You made the best decisions you could, in the most loving way. I made the best decision I could at every step, given the advice i received and trusted. This is a difficult disease and there are lots of uncertainties, from the docs as well as the patients. Warmest wishes, Marjoriekc
Call the Hospice you plan to work with and ask if they have the med you need in a suppository – they likely do. A hospice pharmacy would be more likely to stock, I think.
Bz
Thank you everyone, we are still waiting for hospice services, we are using Drs and nurses in the family until they finally get started. until then it’s the meds we brought and my mom’s family and 5 kids. We are trying to find a pharmacy that has the suppositories been looking since yesterday.
Thank you! EliciaDear Elicia,
I agree with everything that has already been said. We all have our share of “what if’s” and regrets, but I am really beginning to believe that we all have done the best we can with the situations that we have been given and that is all we can do. Take care & know that my thoughts and prayers are with your Mom, you and your family.
Love & Hugs,
DarlaElicia,
From the start you have made every effort to do what is best for your mom, never second guess yourself. Like others have said, stay focused on her care – hospice should be ready to assist before the insurance details are ironed out. If the one you are working with does not step up, call another and just be there for your mom. Your presence and support is invaluable.
Bz
Hello Elicia, what a challenge- I can’t imagine. You’re an angel to your Mom, and she knows it. If you can e-mail me at e-mail hyperlink by my name, I’d like to share a presonal story with you. You and your family continue to be in our thoughts.
Tess
Dear Elicia we are so very sorry for this nightmare you are encountering. We always say that the one thing we know for sure about CC is that we know nothing. Therefore, there is no way possible for you to have done anything differently than what you have done. For each person wanting to do the chemo, there is a person who does not want chemo. Not all the surgeries are successful and the doctors don’t know how things will turn out until they actually go in for the surgery. The most important thing now is that you are at your mother’s side and that Hospice keep her as comfortable as possible. Your family and mother are i our prayers. Please keep us posted.
Dear Elicia,
Being positive on this site is mixed with realism and genuine understanding.False optimism is sometimes quite depressing.I think it best to accept your mom is gravely ill and say and do all the things that need to be said and done.Gather all your supports,the hospice section on this site is a good place to post as people have great knowledge in this area too.
Sometimes people do rally and other times you get a little window where they improve for a time but comfort is the aim,and that goes for all of you.
I,myself regret the chemo that my husband recieved as it seemed to make him worse.Others might regret not getting it.Its all hard going and that trip you made sounded like a superhuman effort!
Best of luck and let us know how things are going
JanetElicia……your posting describes the reality of the situation so please; do not feel the need to apologize for anything you are saying. I assume that Hospice is by your side now. Your Mom should not be suffering from any pain as there is plenty of medication readily available by means of a physician’s prescription or, Hospice should be able to provide it for her. Vomiting can be a horrible side effect of this cancer. My husband experienced it and we have seen it on this board, frequently. In our situation we found suppositories for pain and vomiting to be quite helpful but, others faired equally well with oral medication. Elicia, this is a difficult cancer and I don’t think that you should trouble yourself with what you could have, or should have done. You have done everything to the best of your ability. Of course, there are people who have been given weeks to live and who have far outlived that prediction. But, first your Mom’s pain has to be controlled and her vomiting be reduced to a minimum. Does she tolerate water, or Ensure? Does her vomiting occur after food intake only or, does it happen randomly? You are a wonderful daughter to your Mom. Please, stay strong and continue to reach out. Also, by using the “search function” and entering “pain” and “vomiting” some previous postings might be of help to you. My heart is with you.
Hugs coming your way,
MarionIf I could rewind to july 1st 2009 I would. I would have asked for a 2nd opinion before allowing my mom to receive chemo. I would have gotten the 2nd even though my mom did not have insurance yet (or medi-caide). I would have opted for another form of treatment less invasive. I would have, I would have, I would have…
Side note…Having insurance in America greatly improves your ability to stay alive and fight!
During my mom’s second opinion appt in Portland, on Wednesday we were told that the tumors in her liver were making her sick and not the chemo. We knew she had bile duct cancer w tumors in her liver only it has not spread…but I guess those tumors were enough. Dr told us she only has weeks left. The chemo and cancer have robbed her of strength to walk or move unassisted. She cannot eat without vomiting. They sent in social services to help us with hospice.
We decided to rent a mini van and drive her home to southern ca (from Eugene Oregon 14hours) Dr advised us that she was to sick to ride a 2 hour flight!We are in the process of getting her approved for medical. The hospice care we chose is nation wide granted we had medical pending.
The Dr helped us by getting her a Paracentesis on the Thursday before we left. And prescribed Marinol(not covered by insurance, pill form marijuana for nausea which worked wonders by the way made her sleepy and hungry)
We made it (she was a trooper, considering we had to lay her in the back on memory foam! Getting her in and out of that thing was like watching the 3 stooges!))
The swelling is back, of course and so is the vomiting…It is so hard to watch her suffer, day after day. She is scared. I wish we could have done something to save her. She is still here in pain less the n half the women she was.
Is there any hope at this point? Does anyone have a story out there that was given weeks but is still here fighting?
so sorry this is such a bummer post, you guys are always so positive. Sorry
Blessings, Elicia
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