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Newbie here!

Newbie here!

Posted by Partner on Jun 3, 2020 2:12 pm

Hello, Fellow Caregivers!
So, I am new here.  Just joined the Forum today.
My husband was diagnosed with Bladder cancer earlier this year.  So many, many ups and downs already, and he has barely begun treatment.
I must admit, I'm feeling a bit overwhelmed, and that is unusual for me... so it feels like even feeling like this is new territory.
Anyhow... I'm glad that this forum exists... I've mostly browsed a bit today, trying to figure out how things 'work' :).  Looking forward to getting to 'know' some of you better as we go through our journeys.
 

Re: Newbie here!

Posted by Brighty on Jun 3, 2020 2:28 pm

Nice to meet you Partner‍ .      Sorry you have to be here but you'll find  much support.    I was a caregiver  too.   If you have any  questions  feel free to ask.    Does your husband  have a treatment  plan ?    
Help is out there. All you have to do is reach out.

Re: Newbie here!

Posted by Brighty on Jun 3, 2020 2:43 pm

Hi Partner‍ .   I looked up some names for you.. I'm hoping you can connect with Warriorprincess‍ ... a bladder cancer survivor.    I also found Emzee‍  and Leesa‍ .    
Help is out there. All you have to do is reach out.

Re: Newbie here!

Posted by Partner on Jun 3, 2020 4:32 pm

Thank you!

Re: Newbie here!

Posted by Partner on Jun 3, 2020 4:39 pm

Good to have a place for support, Brighty‍ ! 
In terms of a treatment plan... He’s having a procedure tomorrow that will temporarily allow his right kidney to drain externally (bladder is pressing on the kidney, and good kidney function is needed for upcoming chemo). Then 3-4 months of chemo. Then bladder removal. Then determine if anything further is needed, or (hopefully!) not. 

Re: Newbie here!

Posted by Brighty on Jun 3, 2020 4:55 pm

Thank you for letting me know.   Please be in touch tomorrow if you can to let us know how it went Partner‍ .      
Help is out there. All you have to do is reach out.

Re: Newbie here!

Posted by Warriorprincess on Jun 3, 2020 7:01 pm

Hi there , my name is Liz , better known as warriorprincess, and I am a survivor Iam so sorry to hear about your husbands diagnosis . Please feel free to add me as a friend ,ask questions, just listen we are here for you . 
Compassion has no limit , kindness has no enemy

Re: Newbie here!

Posted by Brighty on Jun 3, 2020 7:06 pm

Thank you Warrior Princess‍ for  reaching out to Partner‍ .    Nice to see your name again.   How have you been?
Help is out there. All you have to do is reach out.

Re: Newbie here!

Posted by Brighty on Jun 3, 2020 7:07 pm

Let me try that agsin.    I think I tagged the wrong Warriorprincess‍  just now.    Hello Liz.  Thank you for reaching out to Partner‍ .    
Help is out there. All you have to do is reach out.

Re: Newbie here!

Posted by Warriorprincess on Jun 3, 2020 8:36 pm

Hi Brighty‍ ! It has been a while! Iam doing well , hope you are doing good as well .Please continue to tag me where you think I may be abel to help.  Keep up the great work ❤
Compassion has no limit , kindness has no enemy

Re: Newbie here!

Posted by Brighty on Jun 3, 2020 8:48 pm

Thanks Warriorprincess‍  Liz! Glad you are doing well.    I will definitely  tag you again.   Thanks for helping out !!! 
Help is out there. All you have to do is reach out.

Re: Newbie here!

Posted by Cynthia Mac on Jun 4, 2020 9:00 am

Wull howdy, Partner‍ ! (Pulling out my John Wayne impression.)

It’s good that you’ve found us. The “other man” in my life (my boyfriend, who I refer to as “the Laddie”) is a bladder cancer survivor (5 years) now, and my “main man” and primary concern is my Dad, a prostate and now lung cancer survivor for whom I’ve been primary caregiver for the last 2 1/2 years.

If there’s any help I can offer, tag me.  You can do that by putting the ‍ “@symbol” right before someone’s name, like I just did but without the quotation marks.

Our primary recommendations for caregivers are to find something that is “your own” - an indulgence, an hour to sit and read, a bit of retail therapy (now that shops are opening again), and to keep your “patient” well hydrated, particularly around those treatment days.

 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Newbie here!

Posted by Partner on Jun 4, 2020 11:35 am

Thank you Cynthia Mac‍ ! It is so good to hear of people like your boyfriend who are doing well 5 years on!

Re: Newbie here!

Posted by Partner on Jun 4, 2020 11:39 am

Warriorprincess‍ .. Thank you! I am so glad to hear you are doing well! I have sent a “friend” request.

Re: Newbie here!

Posted by Clarke on Jun 4, 2020 3:23 pm

Hi Partner,
Welcome to a mine of helpful info and stories!  I have found it a wonderful support.
Hi Partner,
I am a delighted survivor of bladder cancer!  Bladder tumour confirmed in March 2019 led to complete removal of bladder and associated organs (6 hour surgery) that July.  Major hernia at site of surgery erupted during my hospital release meeting with my surgeon a month later..  The hernia surgery led to another month in hospital and rehab.  Recovery has been slower than I expected.   Getting around with a cane or walker, but not driving yet.

But I am a survivor, with a clear CT scan for further cancer, 10 months after surgery.👌
in fact, I am sitting in the sun in our garden to write this.  Wonderful!😎

Did you know there is a separate group within CancerConnection just for bladder cancer?

Good luck on your journey!  I am thankful for a great supporting team: my urologist and surgeon and his team, the nurses and staff at Toronto General Hospital and Toronto Rehab Hospital, my wife and caregiver and my family and friends..

Please stay in touch👍😀. Answers are free!

Clarke Edward,
Holland Landing, ON

Re: Newbie here!

Posted by Laika57 on Jun 4, 2020 4:21 pm

Hello Partner‍ 
sorry to be meeting you like this. Being a caregiver can be stressful.
there's a lot of advice accessible here. what Cynthia Mac‍ said is a great example - be sure not to lose yourself in this. And don't go thinking your feelings about the situation are any less valid. I gave up my hobbies and tried to focus only on what "mattered" (money and my husband's care) and ended up being less productive and able to help (you'll recognize the point when you feel like beating some sense into other people...)
watching my plants die seemed like an omen. nope, it was just bad coping. Lucky for me, i am "into" african violets which you can mutilate and they end up multiplying - so, one day when my husband was in hospital (yet again) i chopped the tops off, put them in fresh soil and started caring for them again - the first crop of flowers is just starting to emerge and that really brightens my mood.
keep a list of phone numbers and know whom to call for what. :) and take whatever help is offered ;)


 

Re: Newbie here!

Posted by Partner on Jun 4, 2020 7:24 pm

Thank you, Clarke‍ ... and great to hear your recent CT was clear! Enjoy the sunshine!
 I’ll look around the site for the Bladder Cancer group (still finding my way around....)

Re: Newbie here!

Posted by Partner on Jun 4, 2020 7:30 pm

Good to hear from another caregiver, Laika57‍ ! And LOL at “watching my plants die seemed like an omen”. 
I hear you on figuring out what will work for my own health too. We’re just at the start of this journey, and some days I feel overwhelmed....