bladder had to stay...next???

16 years 4 months ago #10215 by Marcus
Replied by Marcus on topic bladder had to stay...next???
Oh you caring people! Not to worry about me! Because this forum is by it's nature, not "real" personal, I find myself needing to read between the lines. What I have realized is that all of you are sincere and caring. For a newbie EVERYTHING is pretty much overwhelming, but I have a choice; I can read or not read! I am chosing to read and never thought i would! We have the most amazing circle of friends and family but something about the site draws me into its circle.

Mostly I am enjoying time with Marcus. In fact, right now we're getting ready to go to an outdoor desert museum. EDAG (Every Day is A Gift).

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16 years 4 months ago #10206 by momof4
Replied by momof4 on topic bladder had to stay...next???
Hi Wendy,

I just found something out about that link to "CancerCare". If you live in the US they will actually send you a check for $125.00 just because you were unfortunate enough to get cancer (any type of cancer)and that it is a financial burden ie...loss of job/income etc... Every little bit helps. If you didn't get it the first time it is:

www.cancercare.org/get_help/assistance/cc_financial.php



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.

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16 years 4 months ago #10205 by wendy
Replied by wendy on topic bladder had to stay...next???
I'm sorry everyone...I suppose I woke up on the wrong side of the bed, what a cranky post. I know that everyone who posts on this board has the best intentions. I am just concerned that a misunderstanding is becoming the point while the real point is being missed, that Marcus' doctor did not do the cystectomy and now they need to find out what the next step is.

Karen, it's perfectly ok to post links to helpful sites, articles, anything that is helpful and absolutely nothing to apologize for, in fact if you have helpful links to outside help I should add them!

When it's about treatment options, Webcafe is a good starting point for practically everything but is not the be-all and end-all to be sure.

As with clinical trials, there's explanations about them on WebCafe and links to outside resources to search them. ( blcwebcafe.org/clinicaltrials.asp



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16 years 4 months ago #10204 by momof4
Replied by momof4 on topic bladder had to stay...next???
Wendy,

Sorry if I wasn't supposed to give out different website info. I didn't realize.

Also the info. I did send was regarding flights, and financial help with bills. I didn't find that information on webcafe, thou I did find financial help with medical needs, and medications.

I know nothing of the clinical trials for Metastatic Bladder Cancer, but would be interested to get some information if anyone knows.

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.

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16 years 4 months ago #10200 by wendy
Replied by wendy on topic bladder had to stay...next???
There are many links of resources of all sorts on WebCafe, regarding clinical trials and info, finances, caregivers and end of life/supportive care issues.

I would appreciate it if members would check out what's already on WebCafe regarding treatment options and resources before looking on the web, cuz' WebCafe is about bladder cancer treatments and resources.
blcwebcafe.org/resources.asp

I am not happy about the amount of replies to this thread coming from people who don't know enough about metastatic bladder cancer, and are adding to the confusion instead of helping.

If I was a newcomer to this forum and read this thread I don't think I'd post or even join.

There are sections on the forum for a reason, and people here should stick to what they are directly experiencing, what they have been through and topics where they know what they're talking about.

I think it's horrible, the judgmental BS that has gone on in this thread without anyone actually knowing the details, it's become a scare fest.

My apologies to Peggy and family, who have been discussed here in third person like they are abstract concepts instead of real people.

Wendy

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16 years 4 months ago #10193 by Marcus
Replied by Marcus on topic bladder had to stay...next???
Zach, So glad you got into the blogspot for Marcus. I just asked him and he said go ahead and give the address. So, check it out and post a comment if you can figure out how.
www.marcusgettingbetterallthetime.blogspot.com

I've been posting on another link to the web cafe - invasive. So many caring people on it as well as this link; i feel better every day and hope for the best while searching all the time.

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