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Advanced Stage Bladder Cancer

1 month 1 week ago #58459 by snickted
Thank you...I guess I wasn't prepared for how comfort care works. I thought I'd have more time to talk with her - they have her so drugged up to keep her "comfortable" that I feel like she's already gone. They told me to bring in her favorite wine or meal and enjoy our time together...roses and sunshine. And I got crap. I have a mom would can't squeeze my hand when I say hi or can't say I love you when I tell her. I'm so angry and upset. I want to respect her decision and I know quality of life hasn't been there for 2 months but I'm not ready to lose her.

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1 month 1 week ago #58457 by tlwjaw
OMG I am so sorry. This is so much like what Jeff went through as well. Just sit with her and hold her hand and cry. You have to let it out. She knows that you are there and that's what matters. Let her know it's ok to let go of the pain and move on to that better life. I was very calm the days following Jeff's passing, like I was afraid to let it out. I guess felt like if I kept it in maybe I'd wake up and like you said it would be a bad dream. A few weeks later I had a complete meltdown. There is nothing you can really do to prepare yourself for what is about to come, everyone is different. Hold your family tight and don't stop. Your Dad is going to lose his best friend also. I feel so bad for you and your family. Whatever you do though don't be afraid to shed your tears regardless of who is around. I am here.

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1 month 1 week ago #58454 by snickted
Thank you...and you are right. No answer will satisfy the why at this point because it won't change anything. I wish I could understand why so much pain, she is on so much pain medicine and nothing seems to touch it. She doesn't want us to touch her because her skin hurts. So I just talk to her and she just told us she needs to go. I jokingly asked where she wanted to go and she said heaven. I told her as much as I hate the idea of living without, I want her to be in peace and without pain. I hated every minute of it.

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1 month 1 week ago #58452 by Cynthia
You don’t sound like a broken record and you should never apologize for having the very normal feeling you are having. There are many books written about the stages of grief but the truth we all grieve in our own ways and time. Right now you are in the eye of the hurricane but again time is your friend. This has gone from we are fighting this to where you are now not giving you time to wrap your mind around the new situation. Cut yourself some slack, this is one of the hardest things we face. There is a time for tears this is one of them, grieving is natural and needed.
As for why her cancer grew and spread so fast? That is a question researchers have been trying to answer for a very long time. Maybe someday we will have all the answers but not yet. My sister passed unexpectedly years ago and I was obsessed with the why and how for a long time. What I really was asking was a universal why really, why did this have to happen at all? It took time but I had to except that sometimes there are no definitive answers and even if there were they would really change nothing.
Be as strong as you feel you need to be but don’t rob yourself of the grieving you need. Again we are here if you need us.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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1 month 1 week ago #58450 by snickted
Thank you - it just feels like she went thru bladder removal surgery for nothing...we are only 1 month out from surgery and she's leaving this earth soon. She fought so hard when she had the fistula...she fought hard to recover from surgery but behind every corner was another fight. The fight came in all sizes - infection, fever, pain, tumor spread, not being able to hold her bowels. I hate it and I want more for her but I can't bring myself to say good bye. I can't bring myself to let go...I just want to scream or wake up from this nightmare. Every time I try to talk about the good times, I cry. I cry b/c that was the last. And I keep trying to say, don't cry b/c it's over, be happy it happened. I have been blessed to have a wonderful mother and best friend. I was planning a surprise 70th birthday party she won't have now. She seems so young...and has endured so much. I know in my heart it's the right thing but I keep praying for a miracle. Thank you for listening...I feel like a broken record.

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1 month 1 week ago #58449 by Cynthia
My heart breaks for you and your family, our family has been there. Something I have also learned that no matter what you always want more time. It is a blessing she was able to make the decision. Hospice is a gift to the family and the patient it is just as you described it, about comfort care. Both of my In-laws and my own father went through hospice and I considered it a blessing and a privilege to have been able to share that time with them as hard as it was but that realization came with time. Just be there for her even if she doesn’t seem to know it. Hold her hand if she seems to like it and offer what comfort as her family you can. Talk to the nurses and the hospice staff they will help you understand what is going on. If you need us we are here and know you and your family will be in my thoughts.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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