Need advice transitioning to hospice

[Lund5505]

I have now been recommended to hospice. Chemo is no longer working effectively in controlling the liver Mets and Sloan won't take me due to single lung met. I've been on folfox, folfiri, avastin, cetuximab, xeloda and irinotecan. Both my oncologist and I d nt see much of an upside to stivarga so I guess it is time. Sort of feel like I'm giving up but there doesn't seem to be any valid choices.

My question is what questions should I be asking when meeting with hospice. Also,are there any supplements I should consider to make the time I have left more productive.

[midlifemom]

Sorry to hear you've reached this point.
I wish I was more technically savvy - I don't know how to post links.
I found a few good posts on this under subject line Advice on Hospice
Perhaps if you search on those two key words you will find what you need.
I hope you find peace. Don't feel like you're giving up.
However, if you're still wanting to fight, check into clinical trials.

I have no personal experience butt it seems some have found help with IV vitamin C for energy and feeling well.

Best of luck with whatever path you choose.

[ams5796]

I'm very sorry to hear this news. I wish you the best going forward.


Ann

[Cowgirl918]

I am so sorry. I hope that you are able to find peace in your choice. You did not give up. You are still fighting the good fight. People often think Hospice means giving up. I worked Hospice for years. To me it means empowerment and personal choices about the type of life you want to live. They are very knowledgeable about supplements etc. and palliative care. They work with you to make the journey yours, and only yours.
Make sure they have a qualified and experienced Medical Director, have advanced pain control available etc. and are Medicare Certified. Often they have a therapist or social worker on staff. That was me. I found the support and education very helpful for our patients and for my Dad when it was his time. Remember, this is not the end of the journey. You are just starting on a new road. Take Care.

[Stanfordmom]

Sorry to hear this news. I cannot offer much advice on supplements but wanting to with you the best and painless/happy days ahead.

Hugs ((((((()))))))

[Nik Colon]

So sorry

[midlifemom]

Lund,
Another thought, check out the Xilonix trial.
I believe that focuses more on quality of life over cure.
A search should find you the link.

[Delinda2]

Lund, our friend cowgirl said it so well - this is where YOU get to be in control and chose what makes you comfortable. I will be thinking of you and hoping you find peace in your heart. Please stay in touch and let us know how you are. We are all here for you. XXOXO, Delinda

[jortego128]

Lund, does the number of liver mets exclude you from being a candidate for SIRT? Have you discussed the possibility of it with someone yet?

[Lund5505]

Thank you all for your responses. This is such a caring and knowledgable group.

I have over fifty mets to my liver which I am sure excludes me from sirt. I will look into the colonic trials for xilnonix. My oncologist didn't seem to think it offered much hope but then again when there is none even a little would be heldful.

I am really scared of this next step. More about the humiliation, degradations do indignity than the pain. I still haven't gotten over the indignity of the hospital stay from the colon resection. Why is that the gowns they give are made for so,done 300 pounds and ever time you sit up your boobs are on display for the whole world. Nor they can't handle so,etching as simple as the right size gown what other horrible things will they do just because it is easier for them.

Hospice just plain scares me. The idea of strangers coming into my house and telling what to do and meddling in our family relationships freaks me out. I have a very supportive husband and two really awesome sons and three small grandchildren. But I'm worried that as this progresses I will say or do something that will change their memory of me forever. I've heard you just go kind of crazy when your liver starts to fail.

I just wish I could skip this last step.

Sorry for ranting but I'm really freaking out over this. I'm sure I did more chemo than what was prudent just avoid the whole hospice thing. Fyi, my mom died the night before the were going to dump her in hospice. That may be factoring into my fear factor.

[ronnieciao]

Lund,

I just wanted to say a few words as a daughter and caregiver of a mother the same age as yours. I am sure I can speak for your sons too when I say that all us "kids" of parents with cancer want to do is help and let you know how deeply you are loved and we would do ANYTHING in our power to make any of this....better.

I am determined that that when this disgusting disease takes my Mum away from us it will not tarnish her grace and her memory and she will always be by beautiful Mum in my heart. not a cancer patient. I'm sure it will be fo the same for your and your family, whatever happens going forward.

I wish you great days ahead with your family!

veronica

[surfingon]

Dear Lund,

I wrote this blog entry precisely for patients like you with questions like this: https://sheddinglightonthecancerjourney.wordpress.com/2010/01/24/how-to-choose-a-really-good-hospice-part-ii/

It is really important to understand that not all hospices are the same. If you don't feel comfortable with the one you choose, it is likely that there may be others to choose from in your area. And if there is a staff member that you don't feel comfortable with, you certainly have the right to ask for someone else. Everything about the hospice you choose should be about you and your own unique circumstances and needs.

Hope this is helpful. I'd be happy to answer any other questions you might have.

Blessings on this journey,
Rachel[/u]

[Bev G]

Dear Lund,

I wrote this blog entry precisely for patients like you with questions like this: https://sheddinglightonthecancerjourney.wordpress.com/2010/01/24/how-to-choose-a-really-good-hospice-part-ii/

It is really important to understand that not all hospices are the same. If you don't feel comfortable with the one you choose, it is likely that there may be others to choose from in your area. And if there is a staff member that you don't feel comfortable with, you certainly have the right to ask for someone else. Everything about the hospice you choose should be about you and your own unique circumstances and needs.

Hope this is helpful. I'd be happy to answer any other questions you might have.

Blessings on this journey,
Rachel[/u]

Thank you for posting this, Rachel. I think it's a wonderful resource. I hope you are well.

[jortego128]

Hospice just plain scares me. The idea of strangers coming into my house and telling what to do and meddling in our family relationships freaks me out. I have a very supportive husband and two really awesome sons and three small grandchildren. But I'm worried that as this progresses I will say or do something that will change their memory of me forever. I've heard you just go kind of crazy when your liver starts to fail.

I just wish I could skip this last step.

Sorry for ranting but I'm really freaking out over this. I'm sure I did more chemo than what was prudent just avoid the whole hospice thing. Fyi, my mom died the night before the were going to dump her in hospice. That may be factoring into my fear factor.

Lund, my mom just began Hospice about 2 weeks ago. So far they are very good, very nice people. The main nurse who came for the initial interview is just an absolute sweetheart. As of now they only check in about 3 times a week or so, not intrusive at all.

I recommend interviewing a couple different hospice organizations (assuming there are more than one) in your area and going with the one that feels right-- see if you can find anyone else who has had experience and or reviews about the different available hospices.

So far, I feel very comfortable with the hospice nurses that are checking in on my mom. I understand your feelings, but try not to be scared of them. Their #1 goal is to make you as comfortable as possible.

Josh

[exaussie]

Sorry you are worried and nervous. Hospice people are fantastic. And as to liver failure my son did not go crazy. He said a couple of amazing things near the end. He was very peaceful. Don't be concerned about end of life but the life you have right now. Say and do what you need to do. Write letters see friends see the sights. Enjoy every minute. Pretty much what we all should do

Hugs and peace.