BCACF Newsletter – Spring 2020

THE SUPPORT ISSUE

With so many Australians still in lockdown due to the pandemic, caring for each other is so important. Think about someone who might be of concern to you, and phone them, shoot them an email or send them a text.

In this issue, we want to highlight a few tools to help bladder cancer patients, their loved ones and medical professionals.

NEO BLADDER VS ILEAL CONDUIT SURVEYS

We have 5 years of data from over 300 surviving bladder cancer patients who have been through radical cystectomy. Data updated this week. This has been a great help to many people facing this decision.

BRAVING CHEMO

This new book by Beverly A Zavaleta MD, is getting the thumbs up on many social media pages. Beverly is a doctor who became a cancer patient. It’s a book about how to care for yourself in order to feel better when undergoing chemotherapy. You can get a free preview on Google Books.

TIPS FOR CAREGIVERS

The big US Bladder Cancer Group – Bladder Cancer Advocacy Network (BCAN) – has released a great new booklet for care givers.

PATIENT GUIDEBOOKS

If you or your practice need more Bladder Cancer Patient Guidebooks, Urinary Diversion booklets, Patient Care Plans, “Blood in Pee” posters, just drop us a line at contact@bladdercancer.org.au

FACEBOOK GROUPS

If you are into Social Media there are two very good patient support groups for Bladder Cancer. Look for Bladder Cancer Support – Australia / New Zealand and for men only search: Mens Bladder Cancer and Prostate Support Group.

WE ALL COPE IN DIFFERENT WAYS

Covid is a bust. I heard this song on ABC National Radio. A real Aussie song, simple, heartfelt and touching. It’s a really good tune, to bring a little bit of light into a dark room.

AUSTRALIAN DIRECTORY OF BLADDER CANCER EXPERTS

If you are often working with Bladder Cancer patients, you should register on our directory. It’s free of charge. Our web site gets thousands and thousands of visitors so its a great way for patients to find professionals in their area.

UROLOGY NURSES

Anyone involved with Bladder Cancer knows how important Urology Nurses are. The Victorian Urology Nurses Society is very active and in the following link you can read about their bladder cancer speciality group and view a summary of their recent survey.

ROYAL MELBOURNE HOSPITAL UPCOMING STUDY

The Royal Melbourne Hospital upcoming study on CG Oncology NMIBC oncolytic adenovirus (CG-0070) will take place in 2020/21. This intravesical treatment is being studied as a possible adjunct to bladder cancer treatments along side BCG or as a seperate treatment for BCG-unresponsive patients.

COVID IMPACT ON CHARITIES

On an International level, the World Bladder Cancer Patient Coalition, together with other Global Cancer Patient Organisations, have published an extensive document on how COVID has impacted charities.

DONATIONS

We get no Government funding. We rely on your donations to allow us to keep sending out booklets to patients and doctors; to allow us to keep pushing for greater awareness of Bladder Cancer; to allow us to keep helping thousands of people every month. Please send us a little donation. Do it now!

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BCACF Newsletter – June 2020

Thank you to everyone who supported Bladder Cancer Awareness Month in May. We pushed hard on Twitter and Facebook during the month which led to record traffic on all platforms and record booklet downloads. We also received some nice donations in May. Thank you. We get no government funding so any help is appreciated. You can donate here.

Start-up Guide for bladder cancer patient groups

The World Bladder Cancer Patient Coalition has launched its Start-up Guide for bladder cancer patient groups. Its an awesome document. If you want to get involved and start up a patient support group on Instagram, Facebook or other social media, or to start up a charity, this guide is a great place to begin your plan.

New Downloads

We posted lots of information and graphics during May, to highlight Bladder Cancer. We have had loads of requests for all of that info which is on our website for free download:

Support us by liking our Facebook page

Our facebook page is where we get a lot of support. Please have a look, and friend us or like us!

WBCPC May News

The May 2020 edition of the World Bladder Cancer Patient Coalition newsletter is out now. If you are not on the WBCPC newsletter mailing list you can view the current newsletter on-line. This instalment includes:

  • Thank you for helping us make the world more #BladderCancerAware
  • Campaigning For Cancer South Africa joins WBCPC
  • COVID Advocacy Exchange
  • EAU20 Virtual Congress & Theme Week
  • Bladder Cancer in the News
  • Important dates & events

Read the WBCPC May newsletter or learn more about the WBCPC at worldbladdercancer.org

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BCACF Newsletter – April 2020

Hi everyone and welcome to our April 2020 newsletter.

These Covid-19 times present a range of new problems. What were day-to-day things last month, like going shopping, now present new difficulties for many. It can be scary just going to the supermarket. Social distancing means that there is now less eye contact as you walk down the street. Anxiety levels can increase for people. We can be scared of getting near others or touching anything. And trying to be kind and think of other people first, instead of oneself, can be difficult in our own little “safety bubbles”.

So I have made a decision to give a BIG SMILE or a friendly wave to everyone that I walk past whenever I do my exercise or my dash down to Woolies.

It’s simple. And feels good for two. Try it!

Tony.

New Patient Cards

We have thousands of these cards which medicos can hand out to patients. It’s an easy way to lead patients to our free bladder cancer patient guidebooks.

If you want some cards for your clinic drop us a line and we will put some in the mail. E-mail: contact@bladdercancer.org.au

Post Your Stoma

We have started a “Post Your Stoma” campaign along the following lines:

The Post Your Stoma page allows other people to see your stoma, with and without clothing. As you know, making a decision to remove your bladder includes many questions. One is… how will I cope with a stoma?

Letting other people see how your stoma and bag are situated will help them to be more prepared and to make a good decision. With clothes. Without. Close ups. In costume. Be bold! Be Creative! Post Your Stoma!

Post Your Stoma

New Bladder Cancer Patient Procedure Guides

These guides have been developed by doctors and patients to give those going in for surgery or investigation a clear picture of the entire procedure including preparation and recovery.

Each guide can be downloaded for free and include:

  • TURBT
  • CYSTOSCOPY
  • BCG
  • INTRAVESICAL CHEMOTHERAPY
  • CYSTECTOMY
  • ILEAL CONDUIT
  • NEOBLADDER
  • KIDNEY & URETER REMOVAL

WBCPC March News

The March 2020 edition of the World Bladder Cancer Patient Coalition newsletter is out now. If you are not on the WBCPC newsletter mailing list you can view the current newsletter on-line. This installment includes:

  • Bladder Cancer & Covid-19
  • WBCPC General Assembly Meeting
  • Video: The Landscape of Advanced Bladder Cancer
  • EFPIA Blog – Industry – let’s step up
  • Bladder Cancer Awareness Mont
  • Free Weekly online support group – Healing and Cancer
  • Food and Nutrition tips during self-quarantine
  • Podcast: Cancer Care during Covid-19 in Italy
  • Bladder Cancer in the News

Read the WBCPC March newsletter or learn more about the WBCPC at worldbladdercancer.org

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BCACF Newsletter – February 2020

Hi everyone and welcome to our first newsletter for the year.

New Facebook – Please re-follow!

We lost our Facebook pages and have had to start again! Please friend us and follow us on our new official and authorised Facebook page:

Friend and follow us on Facebook

Today is World Cancer Day!  (Feb 4th)

Today, the 4th of February, is World Cancer Day, Please take a minute to look at the World Cancer Day website: www.worldcancerday.org

And if you are thinking “What can I do today to help a cancer organisation?”  you might consider sending us a small donation:

www.bladdercancer.org.au/donations

World Bladder Cancer Patient Coalition Newsletter

World Bladder Cancer Patient Coalition

The WBCPC newsletter is out now. If you are not on the WBCPC newsletter mailing list you can take view the current newsletter on-line. This installment includes:

  • WBCPC Annual Meeting (22 March Amsterdam)
  • Out with Cancer Study
  • WBCPC joins All.Can International
  • Year of the Nurse and the Midwife 2020
  • European Cancer Forum
  • and more

Read the WBCPC January 2020 newsletter

USANZ in Sydney (March 7th-10th)

USANZ 2020 in Sydney

Come and see us at USANZ in Sydney 7-10 March 2020

We will be exhibiting with a good supply of booklets as well as this unique guitar for some lucky visitor to win and take home!  

More info at usanz2020.com

Unique guitar for USANZ 2020 in Sydney

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November 2019 – The Men’s Issue!

Hi everyone and welcome to our final newsletter for the year. This issue has a bit of a focus on male issues.

Over the last few months we have attended UROGP, prepared yet another print run of Bladder Cancer Patient Guidebooks, been active on Facebook helping people where we can, and continued to be the number one source of information for Bladder Cancer patients in Australia with over 9,000 unique visitors to our site and over 400 booklet downloads and mailings to patients and medicos.

We get no government funding, so how about giving us a leg up and making a Christmas donation?

DONATE NOW

World Bladder Cancer Patient Coalition Newsletter

WBCPC

World Bladder Cancer Patient Coalition Newsletter just released. The coalition is progressing strongly with the appointment of a CEO. This October newsletter has a lot of great information for patients and doctors. Well worth a read.

Read the World Bladder Cancer Patient Coalition Newsletter

Mens Bladder Cancer & Prostate Support Group.

The Mens Bladder Cancer & Prostate Support Group is a new private facebook group for MEN ONLY that has sprung up and it is absolutely fantastic. We know that men out number women as bladder cancer patients, and the delicate subject of sexuality is not easy to discuss for many. In a male only group there are lots of good discussions going on.

Join up if you are interested.

Wiesner Incontinence Clamp

We are not recommending this clamp or recommending clamps in general. That is a discussion for you to have with your doctors. But if you are using a clamp to help with incontinence, which is an issue for many neo bladder patients, some men report this new one is REALLY COMFORTABLE, works well and has 4 size settings.

You can order it from www.menshealthphysiotherapy.com.au

Photo of Wiesner Incontinence Clamp

New EZ Print Bladder Cancer Care Plan

Care Plan Printable version

This sheet has been so popular with urologists, oncologist, stomal therapists, urology nurses and bladder cancer patients. But people were complaining it was too colourful to print out so we have created a new lighter colour, EZ print version.

You can get it here or via the website.

Have a great Christmas everyone.

Tony Moore

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Walk For Dan (Sunday), BCAN news and Bubbles for Bladder Cancer

Load images to see Walk For Dan 2019 route

Walk for Dan is this Sunday! There is still plenty of time to register or donate!

Walk For Dan this Sunday May 26th in Melbourne – More info and route.

Help us reach our goal of $10,000 to go toward life-changing urological research.

Check the current donation tally here.

REGISTER OR DONATE NOW

BCAN USA updates

Our friends at BCAN in the USA have been really busy. A new patient survey for bladder cancer patients and carers, plus they are working on a US$10 million grant for bladder cancer research from the US Government.

BCAN have launched a new survey.

If you are a bladder cancer patient, survivor or carer, please do the survey.

The results of the survey will be shared anonymously and will be used to create decision-making tools and patient education materials that could help newly diagnosed bladder cancer patients and caregivers better understand the impact of bladder cancer and its treatment.

BCAN in line for $10 million grant.

The U.S. House Appropriations Committee released its report for funding in fiscal year 2020 for the Defense Appropriations Act. The report recommends $100 million in funding to conduct peer-reviewed research into a number of cancers and bladder cancer is listed first for up to $10 million. BCAN has been at the forefront of advocating for increased funding for research into this sixth-most diagnosed cancer in the United States. The funding request is just that for now – a request – and the bill needs to be approved by both the House and Senate and signed by the President to become law.

BCAN Mailing List

It’s so important we all work together to solve the bladder cancer puzzle.
Join the USA BCAN mailing list. Bubbles for Bladder Cancer

May 19th was #BubblesForBladderCancer day! A day in which we blow bubbles with our friends and families to remember those we have lost to bladder cancer. Our patient advocacy group BCA Australia organised a national bubblethon to mark this special day!

More photos on the BCA Australia Facebook page.

BubblesForBladderCancer Images

May is International Bladder Cancer Awareness month

Bladder Cancer Awareness month ready for lift off

May is 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!

Our charity will be contacting many of you directly by email or telephone during the month to connect our efforts with yours. We hope that you can take 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.

Bladder Cancer Awareness Poster

We have created a new A4 poster you can download and print here… or we can post you copies – please email the team at contact@PROTECTED

Bladder Cancer Awareness poster

The 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 platform now: Twitter, Facebook, Instagram

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.balddercancer.org.au/WalkForDan. A brisk Sunday walk (4.2km) and you’ll be home for Sunday lunch! Please come and support this great initiative.

Walk For Dan 2019 route image

USANZ Brisbane

Thanks to everyone who came to see us at the recent USANZ Convention in Brisbane. We underestimated the demand for our booklets and we were out of stock by Monday lunchtime. All who requested copies to be mailed should have received them by now. If you need copies of our Patient Guidebook or Urinary Diversion booklet just send us a request at contact@PROTECTED.  

Congratulations to Nish L, an International visitor, who won the guitar that was donated by The School Locker!

USANZ Brisbane Photos

Walk For Dan 2019, USANZ, Norwegian TV

Video image of biker with motorcycle

>>> Or view the 3 minute movie

Walk for Dan – 26 May 2019

May is Bladder Cancer Awareness Month and the team from BladderCancer.org.au are hosting Walk for Dan 2019, a walk on Sunday 26 May around the Royal Botanic Gardens, Melbourne, with 100% of funds raised going toward the Daniel Christidis Urology Research Scholarship.

View the route, read more about Dan, register now or make a donatation to help us reach our target of $15000.00 – Register/Donate

Walk For Dan 2019 Route image

USANZ Brisbane this weekend!

USANZ Brisbane 13 April 2019

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

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

We are 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 re-created from the original with modern electronics by the same Italian company.

Come along and put your name in to win!

Win this guitar at USANZ

BCACF Newsletter April 2019

World Bladder Cancer Patient Coalition logo

We are delighted to advise that at the inaugural 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 Associazione Palinuro (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.”
USANZ Brisbane is only a week away

USANZ Brisbane 13 April 2019

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

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

Win this guitar at USANZ

Neo Bladder & Ileal Conduit/Stoma Survey Update

Thanks to everyone who recently completed the surveys.

The most current results have been updated on the respective survey websites:
www.neobladder.com.au and www.ilealconduit.com.au

The surveys are still open and we are now in the process of completing some deeper analysis looking at time lines as well as broad averages. It would be great to see the situation with patients 2+ years, 5+ years etc, so if you did the survey before a few years ago, please do it again.

May is Bladder Cancer Awareness Month

Bladder Cancer Awareness Month is May! (Only 25 days away)

Here is the International Schedule:

1 May 2019: Launch of Bladder Cancer Awareness Month
12 May 2019: International Nurses Day
19 May 2019: Bubbles for Bladder Cancer Day

26 May 2019: Bladder Cancer Awareness Walk in Melbourne.
31 May 2019: End of Bladder Cancer Awareness Month with a Friday party at your place!

Please use the hashtag #bladdercanceraware in May!

Related: Light The Month Orange – BCAN

Bladder Cancer Practitioner Directory

Are you a medical practitioner dealing with bladder cancer patients regularly? If the answer is YES – please sign up to our are directory so patients in need can find you!

It’s free advertising for you: Add your contact information here

Australian Bladder Cancer Specialist Directory

The BCACF is working toward creating the definitive directory of health professionals involved with Bladder Cancer in Australia. This will be a valuable resource for all patients across the country as they go through their personal bladder cancer journey.

You can add your name to the directory here:

Add Professional Listing

The BladderCancer.org.au web site has over 50 unique visitors every day (more on weekends) which represents potentially 2,000 people per month looking for answers about bladder cancer. This FREE listing on our website is sure to bring more patients seeking assistance to your facility!

When filling out the categories you specialise in please only select the options where you consider yourself to be an expert, for example, if you are a stomal therapist but have never performed a neo bladder irrigation please don’t select neo bladder! But if you have been deeply involved with both neo bladder and ileal conduit patients please check both. If you are a pelvic floor physiotherapist treating 99% women please don’t indicate that you are a continence expert for male post bladder cancer surgery etc.

Please only select your top skills, the areas where you know that you shine! Patients will appreciate this and the resource will become valuable if it offers accurate information.

Thanks
Tony Moore

Director – Bladder Cancer Australia CF

1/296 Collins St, Melbourne Vic 3000

BCACF Newsletter March 2019

New Bladder Cancer Awareness Videos

Bladder Cancer Awareness Videos (preview)

We have 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.

Inaugural World Bladder Cancer Patient Coalition

World Bladder Cancer Patient Coalition logo

The World Bladder Cancer Patient Coalition are holding their inaugural 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 around the globe.
Read more…

May is Bladder Cancer Awareness Month

We will have more news about Bladder Cancer Awareness Month international and local activities and support after the Barcelona meetings. Stay tuned!

New Bladder Cancer Practitioner Directory

Are you a medical practitioner who is a BLADDER CANCER expert practising in Australia? Please add your name to our directory. Free of charge.

Tony Moore
Chairman – BCACF