5 things (caregiver)

I wish I had known that when a patient wants to give up, it truly affects their outcome, and they are entitled to that choice.
I wish I had known that cheerleading is not caregiving.
I wish I had known that 30% survival rate at 5 years really means 70% will die before five years, and that 100% will be dead in 5 years.
I wish I had known how helpful hospice would have been, so I could have gotten them involved earlier.
I wish I had known that care for infections in a local hospital would be more comforting than all the bells and whistles of a tertiary care center, and could make for a better outcome.
I wish I had known how important it would be to both of us to just sit and hug, even if it means crawling into the hospice bed, and sleeping there.
I wish I had known that discontinuing treatment is a valid choice that can enhance the quality of the life that is left.

And I wish I knew how helpful this could possibly be to the person I was before the metastasis and my husband's death.

Good discussion question!

Stephany in Iowa

I wish I had known that it is vital to get second opinions.
I wish I had known as a caretaker how important it is for me to remain calm. One of us could panic but not both of us at the same time.
I wish I had known more about CIS and the difference from papillary Bladder Cancer.
i wish I had known how to ask for help.
I wish I had known that pain when urinating might be something more than a bladder infection and to seek a urological consult sooner.

I tried to think back 8 years to when Dick was first diagnosed with CIS. Much has happened in the years in between. I think these were the most important at that time.
In addition I wish I had known when the cytology reports kept showing atypical cells, suspicious cells when the bladder biopsies did not pick up any more tumors that we considered upper tract involvement and asked for treatment for that area. The Doctor said he couldn't treat what he couldn't find but the signs were there and we knew Dick had CIS which is notoriously hard to see.

Julie

The things I wish I knew as a (metastatic) caregiver:

1). I wish I knew what he thought about his own condition. When I would hear him tell his kids (grown ones) only something positive about a negative report, it made me wonder if he really knew the deal or just being the parent. It turns out that he really didn't know the whole picture.

2). I wish I could tell the difference between extreme fatigue and extreme I don't give a darn.

3). I wish the Dr. would tell me (aside from my husband) things that important for me to know, such as treatment expectations involving time to progression and survival rates (because I am a realist with some medical training and Mom and Sis to pass away with cancer)

That is definitely not the whole list but things that come to mind in the short time that I have to post. I hope this helps.