An update from Mary

This is Not at all what we want for you.
Bc is a bitchy little thing and is always finding a new way to mess with us.
I am truly sorry for your present situation and hope like hell that the therapy is successful.

George
You can vent here as much as you like

Hi,
I have just been told I have metastatic bladder cancer. The oncologist found uretheal cells in an abdominal lymph node.
So I started treatment last Friday that will continue every three weeks for as long as I tolerate it and/or it stops working.
The doctor told me that it works in only 20% of the patients. So they aren't very good odds, are they.
This drug is called tecentriq. I just figure I'll continue to hear bad news until my last breath.
How can I live my life looking at this treatment every three weeks. How invasive that is on our lifestyle. We travel, sometimes for several weeks.
We are driving our daughter's car out to Oakland, CA for Thanksgiving. How do I do that with being tied to an every three week treatment schedule?
I feel like my life is not my own, and probably this is an end game scenario.
In the 80% of patients who do not respond to this therapy, prognosis is 12 - 18 month survival rate.
How do I live with this onus hanging over me? How do I?

Hey George,

I certainly appreciate your input and your good wishes. I guess someday I will not get so upset, but not yet.

I'm going to see a new therapist who is a social worker at Fox Chase Cancer Center. I already know her from the support groups she holds once a month, and she is a sweetheart. I think talking to someone who is familiar with cancer patients will be a big step forward in my emotional healing.

If I come across any good ideas to stop leakage in bed, I will be sure to let you know. I myself am investigating some specialized undies that will hopefully prevent leakage during intimacy.

Again, thanks for your friendship with me in this oh so fun journey!!

Mary

Hello Mary
I am glad to hear from you! Hearing your story is a flashback to many of us here.
After all you have been through, You may feel emotional about yout new normal.
I have to admit that I beat myself up about the "new Normal" shortly after recovery.
So, where do we go from here?
As time goes by, you will get used to the changes in your life caused by this disease.
After 8 years I still suffer with nightime leakage. At first I was devastated by this. Now, it is just a fact of life. My wife and I are on a never ending search for the best control method and as of yet, we haven't found the perfect item.

Thanks for giving us an update. We think about each and every person who visits us and then resumes their life after cancer.

Good luck
George

Hello Group!

I haven't checked in for a few months, so I though I'd stop by to say hi.

I am still sort of struggling with my "new normal". I've had a few setbacks, none of which has been terrible, just very upsetting to me. A few nighttime leaks in bed, YUCK, a few leaks here and there. Don't know why any of them happened, they just did. Anytime something like this comes along so unexpectedly, I get very emotional and angry. And this is now five months post-op.

I also managed to break two different bones in the same foot. Again, no idea how that happened. Ain't life grand??

I'll be having more scans for the surgeon and oncologist in early September, and I'll be anxious once again to hear the results. Right now, this is an every three months deal, and I am hoping that if all is well with this third scan, maybe they'll push testing back to every six months. Fingers and eyes crossed!!

Hope everyone is enjoying these summer months. Despite all my ranting and raving, I am having a good summer.

Best wishes to all,

Mary