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An update from Mary
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
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11 Replies
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Mary,
So sorry to read this update. It is not what any one of us wants to read or hear for ourselves. I have followed your story on this forum as I was going through the tough decisions and I could feel your pain and anguish. This is not a club we signed up for!
But since my surgery, I have come to realize that we don’t have a choice as to how much time we get to spend on this great earth, but we do have a choice as to how we live our days. I have had the dark days you speak of… The days when you don’t want to get out of bed. It truly sucks big time. But every day I wake up, I am thankful for one more day with my wife and children. I have chosen to be thankful for that time with them and to make every day special. I have chosen Faith, Family, Hope and Courage as the four guiding principles of each and every day of my life, however long that may be. I have chosen not to go back to that dark place in spite of cancer and for the benefit of those I love and those that love me.
So I hope you read this, and the comments from others that are in support of your journey, and that you take a moment to smile, hug your loved ones and choose life!
Joe
Attachments:
45YO male
11/30/2015 Left nephrectomy
2/17/2016 left ureterectomy
8/10/2016 cyctoprostatectomy w/ileal conduit diversion
Cancer free since!
Hello Mary
I’m not sure how to say this…. So I’ll just say itPlease don’t go quietly into that good night. Please come here and yell… SCREAM.. Swear (yes Cynthia we can allow full on swearing from Mary cuz I said so)
Please find a Dr who will at least give you some hope. I for one don’t want you to go away quietly. Sorry I am so late to post this but I have been thinking of you for this week and I can’t let you go.
Please read this and respond. Please use us as your sounding board and let us be here for you
George
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Mary,
I am sorry to hear your new situation. I hope I can say this right – I want this to be positive, but impersonal computers make it hard.
I have been where you are now. I’m sure others here have also. Sometimes life sucks big time and the journey is overwhelming.
Eventually it is time to consider what you will do tomorrow. Take it one day at a time. Hug the kids, talk with a friend, do lunch, whatever may be your thing. This becomes habit forming; when you are ready plan a bit further ahead.
Here it gets tricky. You want to travel, but are concerned about appointments every 3 weeks. GOOD, you are looking 3 weeks ahead already. MAKE your doctor schedule a treatment for wherever you will be in 3 weeks (Oakland?). Contact your insurance company – get them to authorize treatment wherever you will be located. Plan in advance to make your trip happen. It can be done – out of local area treatment is needed all the time. If necessary, ask your doc what would happen if you walked into an ER in a state far away from home and said, “I need a treatment ?”.
If that is not working, how about you start driving a day or so after a treatment, and flying home in time for the next treatment ? (Think about travel needs)
This is for you, not about me, but I know it can be done. When your life gets turned inside-out you have to work harder to do the things you want to do. But you can do them. It does require planning ahead. Your family will understand your challenges and be supportive.
Plan to ENJOY tomorrow. Then repeat daily. It is all any of us can do.
Life keeps getting harder, but the goals and rewards are still within reach.
I wish you the very best, and I truly hope this is seen as supportive.
Best
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021
Hugs to you, Mary.
Anita
Forum Moderator
Caregiver
Hey George,
I’m pretty sure I’m a dead man walking. I cannot sleep at night, and when I try to go to bed, what do you know, but the idea of an incurable cancer diagnosis rears its ugly head in my frazzled brain.
I am scared, angry and ready to give up. Nothing ever seems to go the right way for me with cancer. Why should I keep crying, being scared and, I think, becoming neurotic. I can’t win.
Maybe I’ll just say good bye to this forum and go gently into that good night.
Sorry, but that is exactly how I feel.
Thanks Sara Ann.
Somehow, I do not ever get good news with cancer, so I am thinking this therapy will not work either.
I am quite ready to give up this losing battle. I wanted to have a somewhat longer life, but that doesn’t seem like it will happen for me.
So, you can wish me well, but I don’t wish anything.
Sorry
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
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]
Oh, that is definitely NOT what we wanted to hear. But all of KNOW that you are one of the 20%.
Will keep thinking really good thoughts
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
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
Light a man a fire and he is warm for an evening.
Light a man ON fire and he’s warm forever.08/08/08…RC neo bladder
09/09/09…New Hip
=
New Man! [/size]Sign In to reply.
