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Bladder Cancer Intro and Support

Bladder Cancer Intro and Support

Posted by Lacey_Moderator on Jul 14, 2020 2:09 pm

Hello Everyone!

I was hoping to pull together some of our members with bladder cancer and caregivers to share and connect with each other. It can be so so helpful to talk to somebody going through something similar. Let's start a support thread here!
  • When were you diagnosed with bladder cancer?
  • What treatment did you have? (surgery, chemo, rad etc)
  • How are you doing today?
  • What would you tell someone newly diagnosed with bladder cancer?
All are welcome!

Warriorprincess‍, livingwithbladdercancer‍, lisac‍, Emzee‍, davieskk‍, FayeMarie‍, Stevenmussell‍, Annamarie444‍, ssgirl‍. Bubbiewarrior‍, SunnysMom‍, sammy72‍  can you start us off?

Re: Bladder Cancer Intro and Support

Posted by Warriorprincess on Jul 14, 2020 4:08 pm

Hi I'am Liz aka warriorprincess . I was diagnosed with bladder cancer 4 years ago . My cancer did not spread through the wall of my bladder, this allowed me to participate in the BCG programm
 The imonotherspy was a  series of 8 treatments .  I was treated with a form of the tuburclosis virus (yikes) . I still have check ups every 6 months, next check up September. Life has returned to normal , I am very active bike riding,  walking , pole walking , swimming and I LOVE my crafts .
To anyone  newly diagnosed,  never give up. A positive way of thinking is very important to your well being now and as you go through treatment . 
Always here for help , just message me :)
 
Compassion has no limit , kindness has no enemy

Re: Bladder Cancer Intro and Support

Posted by Lacey_Moderator on Jul 14, 2020 4:44 pm

Warriorprincess‍ 

Liz- SO so good to hear from you! Glad you are doing well 😊

Thank you for always being willing to share and help others!

Lacey

Re: Bladder Cancer Intro and Support

Posted by Cooper2019 on Jul 14, 2020 7:14 pm

I was diagnosed on December 21, 2019.   
My first surgery was December 23rd to remove three blueberry sized tumours T1.   
My second surgery was February 19, 2020 where Dr scraped the bladder wall tissue.  T2 diagnosis resulted. Luckily no spreading anywhere else.  
I started chemo May 8 and will finish July 24.    After 4-6 weeks break I will have bladder removed at Prince Margaret.  
Staying positive with lots of family support.    
No loss of appetite or taste.  Watching the “covid 15” doesn’t creep in with fatigue and lack of exercise.    
 

Re: Bladder Cancer Intro and Support

Posted by Clarke on Jul 15, 2020 10:57 pm

I am Clarke Edward,survivor!  

My tumor was diagnosed March 2019 and I chose a radical cystectomy, completed that July.  A week in hospital turned into 2 months in hospital and rehab, due to subsequent hernia surgery.  Home since September,  I get 2 visits a week from a nurse to care for my stoma and nephrostomy sites and tubes.  I have returned to Toronto General Hospital to have the nephrostomy tube replaced.  

Regular tests show no sign of cancer return and I have almost no pain, other than from my tubes shifting.  

But I am a shadow of my old self.  Using a walker in the apartment and walking about half a block a day, no chance to help with mowing or house maintenance Or even driving the car!

Yes, I am a fortunate and thankful survivor, living well, but not living the life I had hoped to return to.

Clarke Edward

Re: Bladder Cancer Intro and Support

Posted by MCoaster on Jul 16, 2020 12:04 am

Welcome Clarke‍ and thank you for joining us here.   The life you live now is certainly very different to the one you envisaged and I am so sorry it turned out that way.   It must be so stressful to put it mildly to come to terms with the physical and emotional impacts.   It is reassuring that you are now cancer clear.    Would the involvement of an occupational therapist help?   Do you have any adaptive equipment?

Every one in this community has been touched by cancer either as someone who has the diagnosis or their caregiver and I hope you will find this a place to safely express yourself and also find others who relate to bladder cancer and the treatments.   I know that if you wish to share it will also help others.  

There are many forums and groups etc which I suggest you explore and, when you wish, to post in.  If there is no topic which addresses your needs please feel free to start one.   An initial place to start is “Introduce Yourself” or perhaps “bladder” in “Cancer Type”.

I am happy to answer any questions which you may have.

Healing thoughts.

MCoaster.

Re: Bladder Cancer Intro and Support

Posted by Bambam on Jul 16, 2020 2:26 pm

Hi....I am currently a very active 72 year old lady..power walk daily and do pilates/yoga/step/weights for 30 minutes most nights...I have bladder cancer (& breast cancer) ..Bladder cancer diagnoses 2003..(wow-17 years ago)..and since that initial diagnosis have had 20 small-medium  tumours removed..(cystoscope yearly)..in remission for 7 years...
have had no “treatments”...just became more aware of my health...ie: increased exercise And healthy eating...so far..so good..

Re: Bladder Cancer Intro and Support

Posted by ValMul on Aug 8, 2020 6:03 am

Good Morning everyone.  My husband has just been diagnosed with bladder cancer.  It was discovered through an ultra-sound.  He was being treated for an infection, the doctor decided to take it a step higher and ordered an ultra-sound.  His pain and discomfort had become so bad we went to emergency Thursday night.  We have not met up with the urologist yet, we meet August 20th.  but because of his discomfort he has had many test and procedures done to reduce his pain.  (kidney's were not functioning).
Because of the Covid19 I am not able to be with him until he is admitted into his own room, hopefully that will happen today.  So we have been chatting on the phone or texting each other. Right now our information is quite limited, he has been told he will be having chemo for the cancer.  
I am in a bit of a fog...last week we were quite healthy...this week a new path is starting... just want to keep things positive for us.
 

Re: Bladder Cancer Intro and Support

Posted by Brighty on Aug 8, 2020 9:01 am

ValMul‍  good morning  and nice to meet you.   You will find help and support  here for your self and your husband.    So sorry for the diagnosis.      There are some discussion groups here you might like to join under 'forums ' and cancer types.     Click under bladder cancer.    We also have a caregiver discussion where caregivers share their tips and coping strategies.     I'd like you to meet a few others who have had or have bladder cancer.   
ssgirl‍ 
Emzee‍ 
Cooper‍ 
Clarke‍ 
if you need any more information in the meantime  you can call our cancer info line at 1888 939 3333.    Let us know what you learn on August 20th.   We are here to support you through.      
Help is out there. All you have to do is reach out.

Re: Bladder Cancer Intro and Support

Posted by Brighty on Aug 8, 2020 9:09 am

ValMul‍ 
sorry I meant to tag Liz, 
Warriorprincess‍ .
hi Liz.     Would you be able to help out our new member ValMul‍ 
whose husband was just diagnosed  with bladder  cancer.  ? Thank you so much.    
Help is out there. All you have to do is reach out.

Re: Bladder Cancer Intro and Support

Posted by Warriorprincess on Aug 10, 2020 8:14 am

Hi ! Iam so sorry to hear about your hubby's recent diagnosis.  It can be so scary,  I certainly understand . I would be more than happy to answer questions for you . Send me a friend request if you feel more  comfortable chatting privately. Thinking about you 
Liz aka warriorprincess 
Compassion has no limit , kindness has no enemy

Re: Bladder Cancer Intro and Support

Posted by Lacey_Moderator on Dec 8, 2020 2:37 pm

Cooper2019‍ 

How did your bladder removal go? It would be great to hear from you.

Lacey

Re: Bladder Cancer Surgery

Posted by Cooper2019 on Dec 8, 2020 3:36 pm

Hi there.  The surgery went well but took more than 10 hours.  My left leg objected to that length of time.   Twelve weeks now since surgery.  Getting more sensation in the left leg now.   Still on a walker but have spent a bit of time with a cane.  As I feel more stability on the left leg I can move to the walker more.   I had an EMG and no nerve or muscle damaged.  Apparently just needs time to reconnect again (wake up).  May take up to five months.  With covid I am not going anywhere so that makes it easier to be patient.   
As far as bladder removal and ileal conduit I have been fine.   No leaks and no pain.  Nice red stoma.  Appliance changes going well.   First order of supplies successful.  I have applied for tax benefit and grant.   Haven’t heard back yet.    
Christmas will be a quiet one but I feel blessed to be here!   

Re: Bladder Cancer Intro and Support

Posted by Lianne_Moderator on Dec 15, 2020 5:41 pm

Cooper2019‍ 

Good to hear from you and happy to hear that you are recovering well from the bladder surgery. WIshing you well as you continue to get your sensation back to the leg as well.

I think Christmas will be quiet for the majority of us. 
Fingers crossed for the benefit and grant

Lianne

Re: Bladder Cancer Intro and Support

Posted by Coliver52 on Jan 2, 2021 10:33 am

Hello all,
It is the day after New Year’s Day and I am wishing you all good health in 2021. I have just joined this group. I was diagnosed with bladder cancer December 2019. Have just completed my second round of 6 BCG treatments (was kinda hoping the first 6 would work) I am now waiting a month or two till the bladder inflammation subsides for a cystoscopy in order to see where things stand. I’m sure you all know everything about the patient (or in my case not totally patient!) waiting periods we all go through waiting for news or results. Fingers crossed!
Stay safe and well, fellow BC troopers!

Re: Bladder Cancer Intro and Support

Posted by Essjay on Jan 2, 2021 1:56 pm

Coliver52‍ welcome to this awesome community which none of us want to join...

The waiting game - waiting for appointments, waiting for tests, waiting for results, waiting for treatment to work. There sure is a lot of waiting in this cancer journey. It’s the hardest part I feel. Going through treatment and having positive action taken is so much easier to handle.

Keep us posted on how you get on.

best wishes Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Bladder Cancer Intro and Support

Posted by Coliver52 on Jan 2, 2021 3:56 pm

Hello essay and all,
Thank you for your welcome to the bladder cancer community (I am new to this forum so not entirely sure I am addressing bladder cancer patients/survivors exclusively.) At any rate, thank you so much for your message. I hope you (and the bladder cancer community) are doing okay. I know we all need courage at all the various stages of this journey. At present I am experiencing unexpected pain after ten days of my second six-week BCG treatment. I don’t know if anyone has had a similar experience? Anyway, hope you are all well and thanks for listening!

Two peas in a pod

Posted by Cooper2019 on Jan 3, 2021 9:17 am

Jennalee‍ i had everything removed with bladder (all the lady parts) but nothing with bowel.  Reconstruction required for pelvic area with plastic surgery at the same time bladder removed.  The bladder part is all good.   No issues there.   I have a shark bite looking incision on my leg where they took the flap for reconstruction that took time to heal.  CCAC came in daily for three months to bandage.
I am using the walker less and cane more.  Exercise daily and up and down the stairs too.  Fewer mid day naps.  Not as exhausted.  
During surgery 18 lymph nodes were taken to sample and none showed cancer which Dr said is good news.   CT scan this week and Dr call January 21 with results.   Trying not to anticipate the worst (more cancer somewhere else).   Focusing on the positive aspects of life and cuddling my puppy and hubby.   

Re: Bladder Cancer Intro and Support

Posted by Lacey_Moderator on Jan 3, 2021 11:54 am

Cooper2019‍ 

It's good to hear from you thank you for sharing. 

It sounds like you are doing well with your recovery, keep enjoying those cuddles.

Take Care and please keep us posted!
Lacey

Re: Bladder Cancer Intro and Support

Posted by soggybottom dad on Jan 16, 2021 4:50 pm

in cancer always be prepared, therefore you will not be shocked when the big C returns. Get your doctor to educate you about Cancer.
Soggybottom dad