Many times lurking first post

15 years 11 months ago #15264 by Rosemary
Replied by Rosemary on topic Many times lurking first post
Dear L,

I'm very glad that things are going better for you, but just one question....do you not have a driver's license and a car? There is no reason that I know of that, if you are licensed and have a car, that you can't drive yourself to treatments and get your own water. I had a 30 minute drive to and from my BCG treatments, and it was never a problem. Sometimes, if i needed to, I would even stop at the store on the way home to pick up something I might be in need of.

No one ever mentioned to me that I might need assistance during treatment. The matter just never came up, and it worked out just fine....

Regards,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

Please Log in or Create an account to join the conversation.

15 years 11 months ago #15262 by Friday
Replied by Friday on topic Many times lurking first post
Thank you so much to all of your responses. I can't begin to describe the relief that it has been to be able to reach out and have a human response! Things at home are much better. The weekend finally came and my partner and I were able to take some time to talk it out & figure out what is going on. Fighting when you are sick is just the worst because, I'm not sure if it's the drugs or what, but I am too confused to understand clearly what is really going on.

My partner works long hours at a difficult/demanding job and so she just didn't have the energy for me this time around. Things kind of blew up in our face. I know that the doctor is going to want me to start the BCG treatments and the stress in trying to figure out how I was going to manage that when my surgery alone was intense. Julie, I totally understand what you are saying about 'living' with the cancer and that it is something that I am going to have to deal with and so by proxy is my partner. I think we are just working out the kinks--I'm hoping.

My family is not going to bother learning about this---it's just the way it is. It's not that they don't care--they do, but not that much. Everyone is busy with their own life. My partner will learn, but there is only so much that she can do realistically. She is younger than I as well and so the capacity to handle stress is a little less I think (not just because she is younger, but partially).

I have decided that I need to quickly look into what kind of support I can find. If I can hire a driver/nurse once a week to take me to my appointments and just come back to the house and putter around getting water or whatever...that would help.

I really appreciate the support I have gotten. Thank you so much.

L.

Please Log in or Create an account to join the conversation.

15 years 11 months ago #15218 by gina
Replied by gina on topic Many times lurking first post
L,
i am so sorry for your situation! your post especially touched my heart!..i cannot imagine being in your shoes...honestly, for the past 5 yrs my husband and i have dealt with another family trauma and prior to my disclosure were worlds apart!...it seems that my diagnosis brought our marraige "back together" again. i am very thankful...without his support i'd be lost!! just as you say, having bc is a very lonely place..even with support!...you need to have a heart to heart with your partner or as suggested here..find help...lack of support is one thing..."feeling unsafe" is quite another!!...my address is This email address is being protected from spambots. You need JavaScript enabled to view it. , feel free to email me privately if you'd like!!..take gentle care, gina

Please Log in or Create an account to join the conversation.

15 years 11 months ago #15213 by Julie
Replied by Julie on topic Many times lurking first post
The issue with your partner is a big deal. If this is how your partner reacts to you not being well it needs to be addressed. Bladder Cancer is very treatable and many people live a long time with it. The key is they live with it. Having Bladder Cancer means seeing the Dr. several times a year, it may mean having a TURBT one or more times a year. A supportive partner on your team is a blessing someone who can't be there for you is toxic. As we are talking long term needs as well as short term. Is this what you want for yourself? Is she able to be supportive at all? Are you able to tell her that her verbal behavior is verging on emotional abuse. I think it is important that your family and partner learn about bladder cancer and how they can support you emotionally.

Also do not feel bad about posting you are in the middle of a serious problem and need to be able to find support and this is a good place to come.

An yes my spouse is cranky and irritable when he is in pain as he is after treatment. He is working hard on not lashing out at me verbally but he still does at times. Yes I get resentful but it is more at the situation than at him. Julie


Volunteer Coordinator
ABLSC

Please Log in or Create an account to join the conversation.

15 years 11 months ago #15207 by momof4
Replied by momof4 on topic Many times lurking first post
L.

I agree that your statement about not feeling safe in your home is distressing. Can you contact a Social Worker? Or Cancer Services? There has to be some kind of service out there if you can't stay in your home safely.

Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

Please Log in or Create an account to join the conversation.

15 years 11 months ago #15206 by Mike
Replied by Mike on topic Many times lurking first post
I know this is about BC but I'm concerned about the statement "I don't feel safe in my own home". Are you OK? I'll choose to not over react and assume you are venting as we all need to do, but really if you are not safe please know there are always options in our lives. It is just so hard to see them sometimes.

Anyway, we care about you here and as it was said, someone is almost always on site to listen.

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne