Please advocate for yourself or take someone with you who will

Last week we encountered a conflict with my Jeff’s medical team. I’m not exactly clear what the discord is, but I felt it left us in an impossible situation.

With Jeff’s life literally at stake, I found this unacceptable.

The very short story is that we were given a treatment plan that would best suit Jeff’s circumstances and then, the very next day, we were advised to do something completely different.

As Jeff and I are not medically inclined, we rely on our trusted doctors to lead us in the right direction.

I will mention, the original treatment plan was decided by 2 doctors on Jeff’s medical team. The following day, only 1 of those doctors elected to change the proposed plan.

I’m of the mindset that if it doesn’t feel or sound right, it probably isn’t.

I took the time to message the doctor who had been “overridden”. Said doctor has more experience and is renowned for treating advanced/aggressive prostate cancer.

I explained, in detail, about our experience with the other doctor and the new proposed treatment. As a result, Jeff will in fact be following the *original* plan discussed.

It’s alarming to me because if I hadn’t written, Jeff would have moved forward with a treatment that may not have been as effective.

I just wanted to say, it’s ok to question your doctors. It’s ok to disagree or ask for clarification. It’s ok to keep asking questions until you receive a satisfactory response. If it sounds “off” or wrong, it’s ok to seek a 2nd opinion, or as in our case, involve another doctor on the team.

If you’re uncomfortable advocating for yourself, take someone with you who doesn’t mind challenging things that don’t quite make sense.

Take care of you.
xoxo

~ Stephanie

Advocacy is so important. So is communication. It has been difficult during Covid restrictions-even now, offices don't want "visitors". We are basically rule followers, but sometimes you have to question authority. I have spent countless hours in the car during surgery, infusions, and appointments. Hubby has a hearing problem which recently affected one appointment. I was on speaker phone, but it wasn't satisfactory. Now I have started attending appointments like I belong there --with him telling the receptionist that he is hearing impaired if questioned. No doctor or nurse has even mentioned my presence. Just have to make it by the front desk.

Although I am not very vocal on this subject, I am a strong proponent of advocacy. Additionally, I would like to add knowledge to advocacy. Because, without knowledge we are left to those we believe have our best interests at heart. For example, how many men know what a PSA test is and how many would understand that they may want to ask for more tests? I certainly didn't and that's why I find myself where I am today. Enough of me and back to you. Advocacy!!! We must all be our own best advocate and like Stephanie says, or bring someone who will.

Good job Stephanie, and all of above posts are good. When I was having my RT day after day it was common to strike up conversations with the other guys waiting to get on the rack. I was surprised at how little many of the guys knew about their prostate cancer.

The more you know about your condition, the easier it is to advocate.

I was thinking of you guys today. How have things been?