By the way I sweat a lot …

2015 I went to my GP … hoping to scam some penicillin to clear up a chest cough.
As an after thought I told her that I have had random bouts of severe sweating episodes on and off for a few years – there appeared to be no pattern to it.
She said it could be a heart issue and began to send me off to a cardiologist.
Then she said would I mind doing a 24 Hour urine test just to eliminate something a bit weird.
The test was positive – excessive adrenaline … a possible benign tumour on my kidney.
CAT scan finds nothing on my kidneys but 4 tumours in my bladder.
Lists more tests to eliminate Pheochromacytomas … none!
TURB and bladder burned (ouch!) a ureter got nicked …. big ouch … emergency nephrostomy … scary and a stent
Waited six weeks to find out whether I keep my bladder & kidney .. phew!
Then three years of BCG treatment …. and given an all clear
A lifetime of regular cystoscopies but all is going well.
Sheer dumb luck …. I asked a wacky question, I had a thorough GP and a talented urologist.

Brett

Tony Moore

Tony Moore appointed to the board of the World Bladder Cancer Patient Coalition

Our co founder – Tony Moore – has been appointed to the board of the World Bladder Cancer Patient Coalition.

Andrew Winterbottom of Fight Bladder Cancer UK passed away recently as many of you know.  This coalition was his dream.  

Tony says: ” I am honoured and delighted to join the Andrew Winterbottom quest to spotlight this terrible disease and reduce the pain and suffering it causes to patients, their families and their loved ones.”

My journey starts today

I had blood in my urine 3 months ago so went to emergency department of hospital. They did blood tests, found nothing, urine cleared up – they booked me in for cystoscopy in a months time. 3 weeks later more blood so went back to hospital – doctor told me was “probably bladder cancer” but it is typically “very slow growing so no harm in waiting a week to check” I had an MRI on that day – after waiting 8 hours, I was told no tumors detected and bleeding was enlarged prostate – I was relieved. A week later I went in for cystoscopy even though was convinced there was no need. As I watched the camera go in live on the screen I saw the smooth bladder wall and then strange branch like growths. The doctor says “That’s a tumour”. This happened about 5 hours ago so I am still processing things. Hopefully surgery will happen next week and I will take it from there. I am scared and not convinced that doctors know what they are doing.

May is International Bladder Cancer Awareness month

International Bladder Cancer Awareness month

International Bladder Cancer Awareness month starts today! Throughout the month of May, we will be working double time to make the community #BladderCancerAware!

We hope everyone takes some time during May to highlight Bladder Cancer in your workplace, on your social media, with your friends, at clubs… anywhere you can! Start the conversation today on bladder cancer.

Recent International Statistics suggest more than 40% of Bladder Cancer patients don’t survive. We can save so much heartache through early diagnosis. So let’s all get the “Blood in pee” message out loud and clear in May.

Official Hashtag

The official hashtag for Bladder Cancer Awareness month is #BladderCancerAware ~ please use it on your Twitter, Facebook and Instagram in May!

Check the #BladderCancerAware trend on your preferred platform now: Twitter, Facebook, Instagram

Bladder Cancer Awareness Poster

We have created a new A4 poster you can download and print or we can post you copies – please email the team at contact@bladdercancer.org.au

Walk For Dan

Our efforts in May will culminate in the epic Walk For Dan on Sunday May 26th in Melbourne. Register now at www.bladdercancer.org.au/WalkForDan. A brisk Sunday walk (4.2km) and you’ll be home for Sunday lunch! Please come and support this great initiative.

USANZ Brisbane is only a week away.

Win this guitar at ANZUS Brisbane

The Urological Society of Australia and New Zealand (USANZ) is the peak professional body for urological surgeons in Australia and New Zealand.

Key dates
APSSM 2019 11 – 13 April 2019
USANZ/ANZUNS 2019 begins 13 -16 April 2019

Registration and information: www.usanz2019.com

Come and see us on our booth; just left of the main entrance.

We will have stock of booklets, posters, care plan sheets and more for you to take home. As usual, we will be giving away a guitar to a delegate or exhibitor.

This year The School Locker has contributed an amazing instrument – the EKO Ranger 6 string acoustic with pickup & EQ. In the late 60’s and 70’s this instrument was a key component of most UK recording studios. Used live and in the studio by Jimmy Page, Eric Clapton, Jethro Tull, Mick Taylor (Rolling Stones) the instrument had an excellent live and recording sound when mic’d up. You can hear a lot of this guitar on Led Zeppelin 1,2 & 3, Blind Faith, Thick as a Brick and countless other London session records of the time. Re created from the original with modern electronics. Same Italian company manufacturing internationally.

Come along and put your name in to win!

World Bladder Cancer Patient Coalition Update

We are delighted to advise that, at its meeting on March 28, the interim board of the World Bladder Cancer Patient Coalition unanimously approved the admission to membership of ActionBladderCancer (UK), Bladder Cancer Australia Charity Foundation and Associazionepalinuro (Italy). Together with BCAN (USA), Bladder Cancer Canada, Fight Bladder Cancer UK, Norwegian Bladder Cancer Society and Les Zuros France, the coalition now has a solid core of strongly engaged members.

Our co-founder Tony Moore comments: “We need the loudest possible voice to start reducing mortality from the deadly disease of bladder cancer. Many other charities and patient support groups around the world are realising that together is better, and this new coalition aims to give support to all the people around the world trying to help bladder cancer patients and promote awareness of the disease. I am personally very excited to be involved, and look forward to contributing.”

World Bladder Cancer Patient Coalition

Bladder Cancer Awareness Videos

The Bladder Cancer Australia Charity Foundation has launched three bladder cancer awareness videos for males, females and the LGBT community.

The videos are now available on our YouTube channel and the raw video files are also downloadable for educational purposes and dissemination.

We encourage you to embed or share the youtube or raw files on social media channels and networks and any other ways that you can think of to make a positive impact and increase world wide awareness of bladder cancer and its tell tale symptoms.

View and download the videos here.

World Bladder Cancer Patient Coalition

The World Bladder Cancer Patient Coalition are meeting in Barcelona on Monday 18 March and BCACF founder and board member Tony Moore has been invited to join bladder cancer patient representatives from:

After the closed meeting of bladder cancer patient organisations there will be a public launch with speakers from the European Association of Urology, the International Kidney Cancer Coalition, the University of British Columbia, and the US National Cancer Institute.

Invite your colleagues attending EAU to register for the public launch.

Dates for your diary

18 March 2019: World Bladder Cancer Patient Coalition meeting in Barcelona
1 May 2019: Launch of Bladder Cancer Awareness Month
12 May 2019: International Nurses Day
19 May 2019: Bubbles for Bladder Cancer Day
31 May 2019: End of Bladder Cancer Awareness Month

Given that bladdercancer.org.au will now be able to assist other organisations with international programs we look forward to launching International Bladder Cancer Awareness month in May and ask you to get ready to support it!

Frankie – Bladder Cancer Survivor

On March 8, I celebrate my 60th birthday. 2019 is doubly significant as I also celebrate 30 years as a bladder cancer survivor. I am incredibly grateful and consider myself fortunate.

But on reflection I remember it being a surreal time with overwhelming feelings of disbelief. Mostly I recall the oddity of being diagnosed with a medical condition I had never known about or understood. Bladder cancer – the doctors were kidding me, right? I am a woman, and at the time of diagnosis I was 30 years old. Research informed me that bladder cancer was 50% less likely to occur in women and 50 years the average age.

In 1989 at age 30, I had a blessed life with a career in check and a happy family – running around after two small children. But I felt tired, was overweight and had a recurring UTI (urinary tract infection). When blood was evident in my urine, my GP ordered further tests. I was shocked when a tumour occupying 90% of my bladder was detected.

Immediately I was paired with a prominent Urologist and soon I became known as that young girl in Ward 3 South at Cabrini Malvern. Life as I knew it changed for ever and my case was shared widely in medical journals.

Surgeries and several treatments of BCG ensued, instilled in a catheter and lying on a gurney I rotated 90 degrees every 15 minutes. The tumour was successfully removed and my bladder responded well to treatment. On the physical side, all boxes ticked.

Emotionally though, I was challenged and confused. This was the 1980’s, the big ‘C’ was still under a cloud and young people don’t get this disease anyway. Ironically, I became aligned with my father and father-in-law. Aged in their 50’s and 60’s they too were visiting respective Urologists’ and each was in early stages of prostate cancer.

Entrusting the medical fraternity with managing my physical issues, I began a gentle regime changing my approach to mind, body and soul. I shifted my focus to improving everything I could control as a mother, wife and human. I shed kilos, exercised, stopped smoking and gave up the carnivore life.

Cystoscopies became part of my routine and I often walked to hospital from home. When I changed into theatre garb, the walk continued all the way into theatre, no trolley for me thank you. I made my instructions clear – strictly local anaesthetic. Remaining alert I chatted through procedures with theatre doctors and staff. I believed this would ensure I had the mental apparatus to live the experience and will myself to health.

It’s been an epic 30 years and in a recent post-cystoscopy chat with my Urologist we have agreed that I am clear of any nasties for now and I can ease up on the checks going forward.

My team of vigilant doctors have been a blessing and no less are my amazing supportive family. I am indebted to them all. To Drs. David Bosher (GP), Gabi Reisner (former Urologist) and Daniel Moon (current Urologist), thank you, thank you thank you…..30 years surviving has been largely due to you.

I urge everyone to be vigilant. Listen to your body, read the signs and act!

Frankie

Good Recovery

My husband has been diagnosed with bladder cancer and will be operated on in three weeks time. However, a close friend was diagnosed with a more advanced form 5 years ago, and after surgery and her bcg treatment it came back a year later. So she has had to have BCG treatment for three years in total, and now is on a yearly cystoscopy check up with no signs for the past year or two of anything. So we can say she is in remission. This treatment is very good.