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Bladder cancer

Bladder cancer

Posted by Warriorprincess on Sep 6, 2017 8:19 am

Hello out there!
I would love to conect with other Bladder Cancer survivors like me! Some days are rough, I know I always get very agitated before a scheduled check up. How do you cope?
Compassion has no limit , kindness has no enemy

Re: Bladder cancer

Posted by Lacey_adminCCS on Sep 6, 2017 10:25 am

RuthB‍, Bubbiewarrior‍, FayeMarie‍, Brittany Townsend‍, chrissienbobby‍, Bailey‍, Stevenmussell‍, Nova‍, 

This is a great place for ongoing support and dialogue for members who have experience with bladder cancer. Thanks for starting this Warriorprincess‍.

Please introduce yourself below and let us know where you or your loved one is at with treatment.
When were you diagnosed?
How do you cope with regular check ups and life after bladder cancer?

Re: Bladder cancer

Posted by Warriorprincess on Sep 6, 2017 11:29 am

Hi , i am Liz aka warriorprincess . I was diagnosed with bladder cancer just over a year ago, so i am pretty knew to this. I received 6 rounds of BCG treatment , completed in December of last year. Next Cystosopy is Sept 14, I always get very agitated just prior, so now. Not coping very well this time, what do you do to ease the stress?
Compassion has no limit , kindness has no enemy

Re: Bladder cancer

Posted by chrissienbobby on Sep 6, 2017 11:41 am

Good morning, I as well have been going thru BCG treatments. I have my first Cysto Sept 20th.. Don't know what to expect. I was diagnosed January with nonavasive bladder cancer. BCG has been going good, I go every Friday since June 23rd. I am in constant worry of the un known. I am 45. My first time seeing someone on this blog that is going through the same thing as me..

Re: Bladder cancer

Posted by Bubbiewarrior on Sep 6, 2017 6:24 pm

Hi My name is Pam. I have stage 2 bladder cancer it went into the muscle of my bladder. It was removed April 11, 2017. The doctors are trying to spare my bladder. I have had 4 rounds of chemotherapy at Southlake hospital. I have finally recovered  from chemo only to start 33 radiation treatments this week plus once a week chemo at Princess Margaret. I really hope at the end of October all this will be behind me. December 13 will be a big day for me the doctors will do a cystoscopy and hopefully give me awesome news. One day at a time....trying to stay positive. Big hugs Bubbiewarrior - Pam

Re: Bladder cancer

Posted by Warriorprincess on Sep 7, 2017 11:28 am

Hi Pam ( Bubbiewarrior‍ ), hope you are feeling better . Fingers crossed for you that the next scope goes well ! I don't see a oncologist, I still see my urologist . (Maybe he's both?) . Scope coming up has me freaked out. Not sure why, no changes or new symptoms. I was fortunate that the cancer did not go through the wall of the bladder .....BCG has been my only treatment. Keep fighting my friend. 
Compassion has no limit , kindness has no enemy

Re: Bladder cancer

Posted by Warriorprincess on Sep 7, 2017 11:32 am

chrissienbobby‍  , it sure is a scary place l. I hope you are feeling better! Would love to connect, I find some days I just need to talk to someone else going through the same journey as me. Stay strong!
Compassion has no limit , kindness has no enemy

Re: Bladder cancer

Posted by chrissienbobby on Sep 7, 2017 3:18 pm

Thank you for the friend request. Definitely need a friend who is going through the same battle. I focus on the good, I sometimes at night think I feel something, I know it's my mind. I keep busy, and be positive.... Hard sometimes.....Live for each day!!!! Love yor family more and more

Warriorprincess‍ 

Re: Bladder cancer

Posted by ssgirl on Sep 7, 2017 10:20 pm

My husband was diagnosed with bladder cancer after a year of back pain attributed to nerve pain.  Unfortunately his GP did not investigate or take him seriously so he is stage IV at this time, was very sick in late April with a huge abcess from a spinal metastasis.  He is feeling much better now after 5 days of radiation in June and started chemo mid August.  I'm finding it difficult to deal with as the chemo is affecting some of his thought processes.  He doesn't seem to understand a lot of things, perhaps it is too difficult to come to terms with.  Anyway, I'm glad that most of you have had your diagnosis early enough to have hope of recovery.  His treatment is palliative, we are just hoping to have a few years left together with some quality of life.  It's still hard to believe that a year ago we had a normal life.

Re: Bladder cancer

Posted by Warriorprincess on Sep 8, 2017 9:52 am

ssgirl‍ , what a strange  journey this bladder cancer is. I am so sorry that your husband was diagnosed so late . Please know we are here for you. I hope that he starts to feel better soon, and you can spend some quality time together. Thinking of you, a wishing the best.
Liz 
Compassion has no limit , kindness has no enemy

Re: Bladder cancer

Posted by ssgirl on Sep 10, 2017 10:37 am

Thanks Warrior Princess‍  for your kind message.  Every day is a new experience.  He has been feeling pretty good this round of chemo, then yesterday suddenly a bit of a relapse, nausea and just feeling rotten. As well it was the day for the memorial service for our loved one who passed away in early August.  So he had to get through that.  I'm sure it brought forth all kinds of emotions about his own cancer and prognosis. I can't imagine what he is feeling, a roller coaster for sure.  Anyway, we are just trying to take each day as it comes and get through it somehow.  It really helps to have the encouragement of all your voices here on the forum.

Re: Bladder cancer

Posted by Warriorprincess on Sep 14, 2017 8:22 pm

How's everyone holding up this week? I've been stressing for the last month. I get so worked up when its time for a scope. Feeling Blessed today , NED !
 
Compassion has no limit , kindness has no enemy

Re: Bladder cancer

Posted by Annamarie444 on Sep 19, 2017 4:39 am

Im not coping very well I was just informed all the treatments and tumour removals in the past year have been to to no avail They tried everything to save my bladder but it wasnt successful now my bladder has to come out asap My cancer is high grade Drs said it would happen quickly in the next couple of weeks. Im petrified. Has anybody else experienced bladder removal

Re: Bladder cancer

Posted by ACH2015 on Sep 19, 2017 10:21 am

Annamarie444‍ I am tagging Warriorprincess‍ and Lacey_adminCCS‍  into this conversation.

If you click on someones Profile, you have the option to send them a message directly for contact and information.

Lots of good people in this discussion group that can assist you I am sure.

Good that you reached out for assistance in coping. You have been fighting this for a long time, so keep moving forward. It's tough right now but so are you!

ACH2015

Re: Bladder cancer

Posted by Lacey_adminCCS on Sep 19, 2017 10:42 am

Thanks for looping me in ACH2015‍ -much appreciated.

Annamarie444‍ - It's understandable to hear that you are having trouble coping. Finding out that treatments you have endured haven't been effective and you will have to remove your bladder must feel devastating. 

I'm so glad you reached out to connect with others so you can begin to process this next step with support. Pokie‍ may be able to offer some information regarding bladder removal. You may also want to check with Bladder Cancer Canada they have discussion forums there specifically for bladder cancer.

When you're ready to move forward try to focus on the fact that you still have treatment options available for you and you can remove those tumours once and for all! Keep talking and getting support this is a big life change. Have you met with the Social Worker at the hospital?

Try and give yourself the same compassion you would give a friend while you process this ok?

Hugs, 
Lacey

Re: Bladder cancer

Posted by Warriorprincess on Sep 19, 2017 11:47 am

Annamarie444, I am so sorry that treatments have not been successful. It is so frustrating, and indeed a very scary place to be . I do not have experience with Bladder removal , perhaps livingwithbladdercancer could answer your questions . I also strongly suggest connecting on bladdercancer.ca . There are many people that can answer you specific questions. Thinking of you . Liz
Compassion has no limit , kindness has no enemy

Re: Bladder cancer

Posted by Lacey_adminCCS on Oct 12, 2017 4:53 pm

gordr‍ 

Welcome to the site. I'm glad you have joined and are looking to connect. Many people find it so helpful to connect with others who understand. 

I would like to introduce you to Warriorprincess‍, Annamarie444‍, ssgirl‍, chrissienbobby‍ who all have experience with bladder cancer.

Please keep us posted with how you are doing,

Lacey

Re: Bladder cancer

Posted by livingwithbladdercancer on Dec 1, 2017 11:05 am

HI Annamarie444
I had my bladder removed and an ileal conduit installed. I have a stoma that empties into a urostomy pouch attached to my abdomen. The thought of the process, I had found, was far worse than actually living with it. Living with it really is the main thing. It is an inconvenience to be sure, but it has allowed for a return to a normal life. There are adjustments to routine and additional considerations with it, but life is pretty much normal. I have a 2 liter "night bag" that I attach to when I sleep (no more getting up in the middle of the night to go to the bathroom - huge bonus :-) ) I have adjusted my wardrobe to allow for better concealment of the bag when in public and assorted other cosmetic considerations, but aside from that, it really does just become a new routine on a regular day to day. Changing of the bag/flange for me happens every ~5-7 days and the process is pretty simple once you get used to it. I have had it for well over a year now and honestly, it is nowhere near as awful as I had envisioned when the option was first brought forward to me.
Cancer took a lot away from me; a lot, but and it is a huge but, I am still here. I get to spend time with my wife and kids and grandchild. I just returned from a vacation with the family in Caligornia. The urostomy bag was an added annoyance for sure, but in many ways I think of it almost like a badge of honor. It is a physical reminder that, yes, I had cancer, but I won. This bag is a constant reminder that I beat bladder cancer and I get to spend more time with those that matter to me. If you or anyone else wants to talk about it further, I am always open to talk. I wish you the very best, one day at a time, one foot in front of the other and reach out to others for support, suggestions, or just to talk.
Steve

Re: Bladder cancer

Posted by BetteQ on Apr 19, 2018 2:28 pm

Hi:
I have just been diagnosed with low grade bladder cancer. It's such a shock, because you never think it will happen to you. As everyone says, it's the wait time between checkups that is frustrating. Having read so many of your stories, I feel blessed to have a low grade and that they got the tumors out successfully. Will go back in early June for my 3 month cystoscopy. Hoping for good results.

Re: Bladder cancer

Posted by Elsie13 on Apr 20, 2018 5:47 pm

Hello BetteQ‍  Glad you have found us here at cancerconnection. So no chemo or radiation is needed?  Perhaps you can connect with Warriorprincess‍ and Bubbiewarrior‍ . 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Bladder cancer

Posted by Cynthia Mac on Apr 20, 2018 6:03 pm

BetteQ‍ , my “Laddie” is a six year survivor of bladder cancer. He just had his last annual check this winter. I wish for you the same success!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Bladder cancer

Posted by Warriorprincess on Apr 20, 2018 7:58 pm

Hi BetteQ‍ , my name is Liz , and I also have bladder cancer . Iam sorry for your diagnosis, and like you, I was in total shock when first diagnosed. I had 6 riund of BCG treatment, my canxer is very aggressive. But having said that , I have been clear for 1.5 years. My next scope is in May. They always make me nervous , but I am getting better. Please feel fee to ask me any questions I will share what i nfo I can
 i wilwill sendsend you a friendfriend requerequest. Be strong :) 
Liz 
Compassion has no limit , kindness has no enemy