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Advanced Stage Bladder Cancer

3 weeks 6 days ago #58518 by snickted
I hope that in time, I will feel honored to be with her during her last moments but right now I feel like someone stole something from me. That it was too soon and she had to endure so much pain to only end like this. It feels wrong on so many levels. Thank you for everything over this last month...I am still in shock that it happened. I am not trying to be the strong one, selfishly, I'm just trying to get thru the days lately...more so now. Thank you again - it's sad to have company in this nasty disease that claims our loved ones :( but I feel blessed to have had your support during this.

You mentioned heredity - I asked her urologist if I needed to be concerned and he said no. What have you heard?

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4 weeks 2 hours ago #58516 by Alan
Thanks for sharing and may peace be with you.

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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4 weeks 2 hours ago #58515 by tlwjaw
I am so sorry for your loss. It is one of the hardest things we have to go through and I could never wish it on anyone else. I knew when I saw this was a post from you that her time had come. Please just know she is no longer in pain and now has her wings. She is now your guardian angel. You will feel numbness at times and then other times you just have go off and have a meltdown and you know what it's ok!! Be there for your Dad and you children but don't try to play the strong one, they need to know too that it's ok to let the tears flow. Take care of yourself as well, you need to be sure to have yourself checked medically as I know some types are hereditary. Sounds like you have a wonderful group of neighbors. Let them help when they offer, little things will mean the world to you later. Friday the 25th, marks 7 years since I lost my mother and it still feels like yesterday. With time it gets a little easier but the pain never truly goes away. Piece of your heart is forever gone. I love the hat too. It's exactly how I feel about this stinking disease. Please take care of yourself now and if there is ANYTHING I can do please do not hesitate to ask. I am here!

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4 weeks 2 hours ago #58514 by sara.anne
So sorry to hear about your mom and to hear the pain coming through your report. I will never forget holding my mother's hand as she passed, sitting by her bed and wondering if each breath was her last. Now..believe it or not... it is one of my most precious memories, that I was able to be with her at the end.

With all my love to you

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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4 weeks 5 hours ago #58513 by snickted
Hello,
My mom went to heaven yesterday at 12:27...it was so painful to see her go. Like you said below, the hospice nurses said it could be anytime all weekend starting on Friday. I stayed at my parents house all weekend and never left. I knew when we woke up yesterday she was different. It felt like her soul had already left and it was only her physical body. Sunday night, early Monday AM, I asked her if it was time to go and she was able to say not yet. That was really all we heard all weekend - most of the weekend was unresponsive. She could nod but wasn't able to speak or drink. They said the sucking ability goes away so she couldn't drink any liquids. We used a swab for her mouth and that was it. Sunday night she nodded she wanted some food. I feel bad it wasn't something better - applesauce and some chocolate pudding. I didn't realize then it would be her last meal. 4 months from diagnosis was all we got...16 days from putting her in comfort care and 4.5 days in hospice. I can't believe how fast this has happened. I felt like yesterday was a bad dream and I'd suddenly wake up...never happened.
I will share one wonderful memory from this weekend - my mom loved fireworks. She would spend so much money blowing up stuff. My dad hated it but she couldn't wait for July 4th. She wanted my daughter to be born on that day - she came on July 7th. My neighbors knew how much she loved fireworks. It was a running joke on my street as to how much would my mom buy each year. My two neighbors contacted the local firework distributor and told him about her and her love for fireworks. In our city, you are only allowed to sell fireworks on July 4th and New Years, so he said he was so moved by her story that he would donate some for them to shoot off in honor of her. He wouldn't take any money and donated about $500 worth. He even said we could come to their private warehouse next year to pick out some good ones for her. I knew none of this was happening until my neighbors drove to my parents house and asked us to come outside...they started lighting them for my mom. She wasn't able to see them but could hear them. All I could do was cry...it was so nice of them. I wish she could have seen them but I know she loved hearing them. The funny part is where my parents live, it's illegal to shoot them off outside of July 4th so we were so worried someone would call the police. Nobody did though. She was loved by so many.
I am sad that I can't feel her now. I'm hoping I will soon. I had hoped that when she passed I would feel her love surrounding me. I wish I could remove the memories of her slow breathing and the long pauses and how each one I wanted to scream, breathe!! And when I saw her heart slowing down with each one....until I saw it's final beat. Oh god, how I wish this didn't happen. I know you wish the same for your husband. Thank you again for your support and communication. I don't normally say stuff like this or use this word, but I bought a hat with the bladder cancer ribbon on it and it says F-ck cancer. I plan to wear it proudly...because that is exactly how I feel.

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1 month 3 days ago #58501 by tlwjaw
You are feeling everything that myself and I am sure others felt. We feel cheated of time we should have had left with them. I have been thinking of you and wondering how things were going. I am sorry that she is declining like but it is part of the disease progression unfortunately. I feel it is better for her and for your family to have her at home for when her time comes. I was just like you and thought we had more time, especially when he had that really good day where he was alert, ate ice cream, was talkative. Next day barely anything, two days after that he was gone. What happened to the 2-3 months they told us he might have. Instead all we got was 2 1/2 weeks. This disease is one of the worst there is, it just progresses so fast it's unreal. There is no rhyme or reason as to why their lives are shortened and others live so long. I know my husbands parents ask that everyday as they are both are almost 80 and have out lived their only son. I wish there was something I could say or do to help you through this difficult time. Trust me though you do want the doctors and nurses to be honest and up front about what's going on. I know our hospice nurses were fantastic and honest. When I asked what they thought they were straight forward and told me it was any day. Take each day you have and make memories even if it's just holding her hand or kissing her cheek. Nothing you can do and nothing I can say will prepare you for the day that is to come. Do not hold back your grief though because that will only make you feel worse. I am just so sorry it has come to this point so soon. I know you are afraid to bring her home but that's what hospice is for, they have your back and there for you 24/7, take advantage and do not be afraid to call them. I am still praying for you and your family. Please keep me posted.

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