Best Of

My all inclusive HMO provides all hospice services though occasionally farms them out if overloaded. There are simply too many fingers in the pie and very little being done as they try to figure it out who should do what or who is responsible for anything. My pressure sores (buttocks) have been there since March but if I don’t bring them up, they pretend it has been resolved. ) and they are not are not responsible or worse, these are rare so I really don’t have a problem. Yes my adult daughters who are truly helpful keep running into the same level of mis communication and flat out errors. We have no choice except to activate asshole mode. I am about one step away from assisted suicide as the current situation is not living.

@tougholdcrow

Thanks so much for the reminder. I really needed it today. I have been Stage IV for 3 years, still on my first line. Nervous because my blood test results from yesterday showed a .1 increase in CEA. While I know that tumor markers don't correlate for everyone, CEA has been eerily accurate for me.

I am hoping that the increased stress I've been under in other parts of my life is causing the uptick. In addition to vision problems I've struggled with for the past 6 months, my son has recently announced that he has been chosen for a prestigious 2 year overseas posting to begin next summer. While I am thrilled for him, it means that his family, including my baby granddaughter, will be gone from the time she is 2 and 1/2 until she is 4 and 1/2. I am so sad that if I die before they return, she won't remember me.

I realize that there are many on this board who have had and continue to have, problems much greater than mine, but it makes me feel a little better to be able to share.

Hugs and healing thoughts to all,

Eleanora

exbrnxgrl- I am sorry you are having such difficulty with getting hospice. I am not ready myself for hospice yet. But my Mom, Dad, and Sister had hospice near the end. Hospice was great, with the patient and the family. My mom had congestive heart failure, my dad old age- 96- and failing, and my sister with cancer. They had hospital beds, oxygen, meds, nurse visits, CNA visits, etc.

What are you having difficulty with? The hospice company? Scheduling? Insurance? Try a different hospice company.

I hate to read you are having such problems when this should be a time when you need peace.

So sorry it has come to this so quickly for you. Have appreciated the knowledge and kindness of your posts on this forum.

Hoping that hospice can solve the pain issue ASAP and that you have a long and peaceful run on it.

Virtual Hugs and healing thoughts sent your way.

Eleanora

13 years was a good run! Why are we pretending that there is a cure for something that has no cure? Please don’t feel sad or sorry for the inevitable . I will not be a “warrior “ and fight for something that cannot be achieved just so my obit can testify to my bravery or warrior spirit.

jbradb52 - Hello. I don't think I'm the best person here to comment on your problem, because I am on Verzenio (a sister drug to Kisquali), but I can tell you my experience. After I started Verzenio, I had a scan at 2 months that showed some slight progression in my bones. Because of that, my oncologist at the time said she wanted to pull the drug and put me on standard chemo. I had read however, that it can take 3-6 months sometimes to tell if the drug is working or not, and she insisted that 2 months was enough. I pushed for more time and she reluctantly agreed to another month. Well, then she went on maternity leave and I saw her replacement and had another scan at more like 4 months. That scan was fine and showed improvement. Subsequently, I have stayed both on Verzenio and with the "replacement" oncologist now for a long time. I've been on Verzenio since May of 2023, so going on 2 years now. I have been stable with now some mild concern about possible progression. I have new scans coming up in March. I think there is a common time frame for Kisquali also, but I don't know if it is the same as for Verzenio. I'm pretty sure that some who are on Kisquali will come along with better info for you than I have, but given my experience, I would say give it some more time! Best wishes to you and your wife.