I'm Walking to Fight Bladder Cancer

Survivor / Thriver

My journey with bladder cancer started back in early 2014. I had discomfort in my back. My acupuncturist suggested that it was not muscular and I should see my doctor and request tests. After urine, blood and ultra-sound there was nothing peculiar showing up. Upon returning to my acupuncturist and visiting my Muscle Activation Technique therapist, the acupuncturist suggested I return to my doctor and suggest more tests. At that time my GP scheduled me for at CT scan. Sure enough...the CT scan showed something in the bladder. I was booked in with my urologist - Ron Kodama at Sunnybrook Hospital - and he then booked me for a cystoscopy (up the urethra with a camera to take a look inside the bladder). During the cystoscopy Dr. Kodama noticed two peculiar sites. As it turned out they were two high grade tumours, non-muscle invasive bladder cancer. I was in for a TURBT in March of 2014 and then followed up with 18 BCG treatments for up to nearly two years. Gladly, I can say that I got my bladder cancer early, I kept my bladder,  and I have been "all clear" ever since. I now return for an annual cystoscopy to ensure that everything remains in check. Surviving and thriving.

Why I Walk

Bladder Cancer Canada and their team and available resources supported me along my journey. Jack Moon, a co-founder of Bladder Cancer Canada was the first contact that I had in Canada. When I had run my first walk in Kenora, Ontario - David Guttman, another co-founder of Bladder Cancer, and I met and he invited me to audit a board meeting. After the board meeting I became a board member, following that as National Walk Lead and these past three years Volunteer Chair of the Board at Bladder Cancer Canada.

We Save Lives

Through our devoted volunteers and staff, Bladder Cancer Canada delivers support to our patient community - raises awareness about the disease and our support programs and funds important research through our Medical Advisory and Research Board and the Bladder Cancer Canada Research Network.

YOUR SUPPORT of MY WALK ensures that we can fulfill on our mandate, year after year.

Please Support My Walk this year

I hope that you will consider supporting my walk this year. I respect and appreciate that times are difficult in the face of COVID-19. If you are making your plans for charitable donations in 2021 - I hope that you might include a donation to Bladder Cancer Canada's Awareness Walk. My personal walk / team page is at FERG DEVINS FAMILY AND FRIENDS .

It would be awesome if you could support my walk - it would be even more awesome if you actually registered to be part of the team. We are hoping that Canadians coast to coast to coast will join our walk this year - register and help raise awareness about bladder cancer with our family friends and neighbours.

Thank You !

Sincere thanks for sticking with me along this journey. Your support is truly inspiring, valued and impactful.

@FergDevins


Bladder Cancer Awareness - Catch it Early

This month of May, like every month of May we at Bladder Cancer Canada work hard to raise awareness about this disease.

I was diagnosed with bladder cancer in early 2014 with surgery to remove two tumours via a TURBT, followed by treatments with BCG.  Luckily for me I got it early and my last check up via cystoscopy in 2020 proved to be "all clear" once again. The best words you can hear from your urologist on an annual check up are "All clear...see you in a year".

In much of our literature and resources we produce, we speak to the critical need to catch bladder cancer early. The earlier detected, the more likelihood of catching it, dealing with it, saving your bladder or preserving your bladder and or taking the appropriate surgical procedures to remove the bladder and stop the spread. There have also been terrific strides made in research to also deal with metastatic bladder cancers and arrest this beast.

When I discovered by bladder cancer I did not know where to turn. I reached out via BCAN in the US through their Inspire network and dialogue. Fortunately for me, moderators in the Inspire network referred me to Jack Moon in Canada. Jack is one of the co-founders of Bladder Cancer Canada. He, along with David Guttman, founded the organization eleven years ago. As patients, at that time, there was no support network to turn to. Thus, they saw the need and rose the occasion of creating a national organization in Canada to support the patient community.

From those early days and the first volunteers, Bladder Cancer Canada has grown to be a national network of volunteers and staff with a clear mission and mandate to support patients, raise awareness and fund research.

Both Jack and David have stayed active. They continue to be in dialogue with patients, assisting them along their path and journey with bladder cancer.

I have been fortunate enough to be a volunteer and current Board Chair of Bladder Cancer Canada. My term will come to an end in December. It was been a truly rewarding experience to serve this organization and the bladder cancer community in Canada and around the world. We are now part of the World Bladder Cancer Patient Coalition and we are raising awareness and assisting with start up organizations to support patients and their families around the world. In fact a past Chair of Bladder Cancer Canada, Ken Bagshaw, is the current President. Former ED at Bladder Cancer Canada, Tammy Northam, played a critical role in the early days of establishing the world coalition.

In essence it comes down to people getting involved and giving  back to their community. We at Bladder Cancer Canada are only as strong as the network of volunteers, donors and partners that we can bring together across Canada.

I hope that as this month of May #bladdercanceraware wraps up that we have attracted more to our community. If you are reading this and wondering how to connect. It is as simple as clicking on Bladder Cancer Canada right here and joining our efforts and cause. Help us help others on their bladder cancer journey.

Be well!

@FergDevins


Bladder Cancer Awareness Month - May - Discovering it...

Bladder Cancer Awareness month of May is an opportunity for those of us who have had bladder cancer to share stories about our journey.

Survived

As a survivor of non-muscle invasive bladder cancer and the Volunteer Chair of Bladder Cancer Canada, I am delighted to have so many across Canada joining with us and taking action within our patient community.

A question might be "How might I know I have bladder cancer?".

Early Sign / Symptom

We remind people through our public campaign "See Red - See Your Doctor" that blood in the urine could be a sign of bladder cancer. If you see blood, see your doctor - even if just once!

How I discovered bladder cancer

My situation evolved from some back pain that was unfamiliar. I had chronic back pain since falling when I was young. I went to my acupuncturist upon feeling a sensation in my back that was not what I was used to. After working me over, she suggested that my issues might be internal and I should see my doctor and request tests. I saw my GP and had urine, blood and an ultrasound. The ultrasound did not reveal anything. So...I went back to my acupuncturist. She worked me over again and suggested that I return to my doctor and request further tests. Luckily my doctor was open to this patient advocacy and he sent me for a CT scan. The results of the CT scan showed something in the bladder. He thought that it was so insignificant that it was likely nothing of concern. However, he did set me up with an appointment to see a urologist - Ron Kodama - as Sunnybrook Health Sciences Centre in Toronto.

Urologist

I visited with Dr. Kodama and residents and they decided that I should proceed with a cystoscopy (more to come on that). The results of the cystoscopy showed two tumours in the bladder. Upon this discovery Dr. Kodama scheduled me for surgery (more to come on that).

Listen to your Body

My point here is that blood in the urine is one symptom. If you are in tune with your body, different aches and pains may be a signal to you that you have another underlying condition.

Thanks to my acupuncturist, my general practitioner and Dr. Kodama and his team I was diagnosed in early January 2014 and completed my surgery in March of 2014. I like to say I've been "all clear" ever since...and after 18 installation  of BCG (more to come on that).

Awareness Month

This month of May awareness month I will be blogging daily about my personal experiences with my bladder cancer journey. I hope you find something of benefit to you or someone who might be facing a similar journey.

Thanks to Bladder Cancer Canada, my journey was one of great support and resource. Proud to return the favour.

Ferg Devins

 

 


Bladder Cancer Awareness

Bladder Cancer Canada Awareness Month of May

Bladder Cancer Canada Awareness Month

The month of May is #BadderCancer Awareness Month in Canada. Along with the World Bladder Cancer Patient Coalition and patient advocacy groups around the globe Bladder Cancer Canada has declared the month of May as Bladder Cancer Canada Awareness month. We are delighted that Health Canada has  officially recognizes our efforts each year.

Our campaign is focused on two intents for the month of May. Firstly, we are raising general awareness about bladder cancer across Canada and around the world. It is the 5th most prevalent cancer in Canada and in in most countries. Secondly, we are intent on reaching out to the 80,000 patients and their families across Canada to get them connected with us at Bladder Cancer Canada. We want to connect with YOU and your family and caregivers and get you enrolled in Bladder Cancer Canada so that you can tap into the resources we offer AND  you might even decide to get activtly involved. You can also connect with us on Facebook at Bladder Cancer Canada - Cancer De La Vessie on our national page or on one of our  20 Facebook community pages centered in our foundational walk communities across Canada. You will also find us on Twitter, Instagram, LinkedIN and a very resourceful site on YouTube. We are here for you.

We are so thankful to members of the media across Canada who are supporting our efforts and in particular our partners at Corus Entertainment and their Global News Network.

#bladdercanceraware

With our #bladdercanceraware campaign this month, we are calling upon our volunteers, patients, families, urologists, oncologists, nurses, general practitioners and the public at large; to join with us to bring attention and awareness to this fifth most prevalent cancer in Canada. Did you know that #bladdercancer is the 4th most prevalent cancer amongst men in Canada and 12th for women? Yet, in funding, it is below 20th!

Some of the milestones this month will include a May 3rd lighting of Niagara Falls in orange. On May 23th the CN Tower in Toronto and the Toronto sign will be lit yellow, with a touch of red. Feel free to speak with officials in your community to request your local icon light up for #bladdercanceraware this month of May.

I Survived

I am personally proud to shout out the #BladderCancer awareness activity through #bladdercanceraware as a bladder cancer survivor myself. I had two non-muscle invasive tumours removed in March of 2014 followed by regular check-up cystoscopies and BCG treatments. My check ups since surgery have remained"all clear". I am now into an annual check-up frequency. Thanks to Dr. Ron Kodama at Sunnybrook Health Sciences and his team for looking after my medical needs. I've taken the active step of getting involved with Bladder Cancer Canada as a board member and I am completing a three year position as volunteer board chair.

Spread the Word

YOU can help us this month by helping to spread the word about #bladdercanceraware as part of our effort to raise awareness coast to coast to coast in Canada for #bladdercancer. Feel free to retweet @BladderCancerCA or on Instagram @bladdercancercanada or post on Facebook. You can also gain more information and ideas about Bladder Cancer in Canada, and ways to support our awareness month of May at www.bladdercancercanada.org. Perhaps you will decide to volunteer, join a forum or make a donation to support the fight against this disease.

Please help shout out awareness for #BladderCancer Canada by using our #bladdercanceraware hashtag across your social networks this month.

Thanks for helping us gain greater awareness for Bladder Cancer. And for wellness sake, if you See Red - See Your Doctor !  @FergDevins

 


Bladder Cancer Awareness

Bladder Cancer Awareness - Pandemic Times

New Normal - Same Cancer

Since March of 2020 our patient community, like so many other patients facing their challenging times, has been reminded to continue to pursue their appointments with doctors and appropriate follow up - pertaining to their own individual circumstances. The pandemic may be causing us a new context of normal but we are reminded that it is the same old cancer.

Symptoms not Lessened in Importance

Critical to bladder cancer patients is the fact that symptoms are still symptoms. We caution the public and remind them that if they see red in their urine they should seek out their doctor and request tests. Through these challenging times, one might find themself taking an easier route of "waiting til this is over" to seek advice. Don't wait. If you see red in your urine - start the process of checking this out with your doctor. It might require some tests, an ultra-sound, maybe even a CT scan. If your doctor is concerned, he/she might refer you to a urologist. Don't delay because of COVID-19. Advocate for yourself and be sure to take the steps necessary to rule out bladder cancer.

@FergDevins


Cystoscopy

Bladder Cancer Awareness - The Cystoscopy

Ok you've had your initial concerns expressed by your GP, you've headed off to the urologist, the urologist might have run some more tests, maybe another scan or ultra-sound and now they think that they would like you to have a cystoscopy.

In essence this is an opportunity for your urologist to go up into the bladder with a tiny little camera and have an exploratory look around.

So...you're thinking "a camera up my what !?". Smiles...trust me, if you are on the path of assessing whether or not you have bladder cancer, you will want to just trust the guidance of your medical team and book this as quickly as possible so that they can assess your situation.

You will be asked to disrobe, likely put on a hospital gown or two (back and front). You will climb up on a table in a procedural suite of some sort where you will put your legs in stirrups. The nurse will give you a quick wash down there and then likely give you some freezing gel that will help numb the area so that the scope can then be inserted up through the urethra and into the bladder. For males you might find a slight discomfort as the cystoscope passes by the prostate gland. Try and be as calm and tension free as possible, sometimes good to take a deep breath. It may also help for you to take a tylenol before the procedure to further minimize discomfort.

The doctor may draw a small sample of urine from the bladder. The doctor performing the cystoscopy will fill your bladder up with saline to expand the bladder for best viewing opportunity. You will likely have a chance to view the inside of your bladder along with the doctor and his team. The team may include the nurse that prepped you and possible a resident student if your hospital is an educational university institution. In fact the resident may actually perform the cystoscopy and then call your urologist to take a look at the findings.

In my situation, Dr. Kodama saw two small tumours in the bladder. They almost resembled a cauliflower shape. On viewing what was in the bladder the Doctor tapped me on the shoulder and said, "I think you are likely going to need a small operative procedure (my recollection...likely  not his exact words).

The procedure might take up to ten minutes or less.

After the examination you will get dressed and then meet with your urologist for a de-brief to discuss next steps. I'll cover that de-brief in the next blog post.

@FergDevins


How's that New Year Resolution going?

How's that new year resolution going?

So it is still very early in the new year. Heck February 22nd...still early in 2021. Are you still on track with that new year's resolution list?

We can sometimes get a little antsy about the promises we made to ourselves for the new year. There might be even more pressure if that new year resolution actually impacted more than just you and your plan for the year. You spoke those words, now you need the plan for action.

Let's face it, 2020 was a year like no other, never, nadda, nope - and hopefully not one like that ever again!

I like to think that my intentions for the year are pretty straight forward. My plan for action is underway. Eating more healthfully (dabbling with the 17 day diet) - More active (target 10,000 steps a day...or 5K walk a day) - Monitoring food (just simply getting back to eating healthy, smaller portions, less fat, cut back on the wings, reduce adult beverages) -  More focused on social networks (Interesting find of the new Clubhouse App which is actually like a conversational podcast where you get to participate). Goals are not too lofty - but no matter how grand they need to be actioned.

It is said that it takes 21 days to create a habit or 21 days to rid yourself of a habit. To keep the new habit it takes commitment and determination. A commitment to self discipline.

With all of the positive words, phrases, thoughts for 2021 - you might have some fun with this word art tool below. If nothing else it might give you some inspiration in your workspace.

Have some fun and create some word art with some of the thoughts that are on your mind for your world in 2021:

When you look at your list you will find different magnitudes of thought and interest. Some of the thoughts might have a significant consequence, some of them minor, some of them are things that should just get done.  On a lighter scale, some are perhaps wishful thoughts. Hey...why not dream a little bit too.

Reinforcing Personal Commitment

None of it will get done, without a commitment to do and action to follow.

Furthermore, whatever it is that you/we/ I want to get done - it doesn't just magically happen because someone decided to make it happen for us. We have the power to take the action and get on with the doing. As I often say "Your Day is only as good as YOU make it".

Three Resources To Consider

I've always been a big fan of Chris Brogan and Rob Hatch at owner.org. Chris always kicks off the year with the practice of defining his three words. It is a powerful way to focus on three contextual words that can set up goals and your purpose for the year ahead. What's really important here is that they set a context for action. They are not necessarily initiatives unto themselves. They set a context to shift the mindset to help you get focussed on who and what you need to be to get things moving in a direction. That direction might be a continued direction or a new direction or perhaps a level above last year's direction. The important factor, in my opinion, is that they are foundational. They lay a foundation for the rest of the year. Chris and Rob have ongoing webinars and a slew of resources for personal and business development needs.

Another person I have come to respect and follow is Dr. Benjamin Hardy. Ben has been working on a really great 12 month program since he first launched is "52 Week Momentum" course and weekly coaching through to his current AMP (Accelerated Momentum Program) that integrates accountability pods with weekly check ins. Lots of great resources at Benjamin Hardy. Benjamin has his PHD in Industrial and Organizational Psychology. The Facebook group brings people from around the world together in conversations of possibility. Benjamin also writes some very inspiring and helpful posts at Medium. He's one of the leading writers in that space and his clear thinking and suggestions for success are wonderfully inspiring.

Finally, an annual event that focused on social media - the Social Media Marketing World Summit - was a wonderful conference held in San Diego in March. Last year I attended. We were the last 4500 person conference in the San Diego Convention Centre before the COVID-19 lockdown. Amazed that we got in and out of there without a major situation as the pandemic descended upon the states. Social Media Examiner is the oversight group and lots of wonderful resources. I'm a member of the Social Media Marketing Society with great online resources available at every turn and such a welcoming and supportive group on all platforms.

Structured Support

So don't despair. Find your support network and system that you need to fulfil on success this year and for years to come. It might be a friend that you meet for coffee each week, your spouse, your children, your extended family or a mentor and coach. Perhaps your team at work needs to have a morning or afternoon workshop to determine "what's important and how are we going to get it done".For you personally, it can also be various personal support systems. Fitness - A Trainer, Diet - "Lose It App", "NOOM", Social Media Knowledge - Social Media Examiner, Finances -  Freshbooks, New prospects - Clubhouse and the list goes on.

Like the famous weight loss coach for men Harvey Brooker used to say, "If you could have done it alone, you would have done it already (R.I.P.)".

Take Action NOW

Importantly, don't let another month slide by and still be sitting at the current place with respect to fulfilling your plan for the new year. Take action today. Map it out, write it down, plan milestones, make commitments, journal it, envision it, calendarize it. As Benjamin Hardy would suggest - decide who you need "to be" to make that happen.

Wishing you a Great 2021

Finally, when you question yourself about how that new year resolution is going, what response would you like to have for yourself? By setting your goals, with a plan for action, your year will be as good as you want to make it. 2021 can only be better than 2021 - Let's do this!

Wishing you much happiness, peace, joy, and harmony in 2021. Cheers!

@fergdevins


Rita Winkler

Rita Winkler - Her Art - Her World

Meet Rita

Rita Winkler is the niece of a life-long friend of mine, Mark Winkler. She is the grand daughter of former Mayor of Kenora, Ontario - Kelvin Winkler. They name may be familiar given the recognition that the City of Kenora gave to Kelvin's work and legacy in his community - Winkler Harbourfront Park on Bernier Drive.

Rita is an inspiration for us all. Her art is a special gift to the world.

She gives back to her community through her work and through her art.

Rita's Book Launch

Rita is launching her new childrens' book "My Art, My World" - You can PRE-ORDER with this link.

Rita Winkler is a young woman living with Down syndrome. In My Art, My World she shows us the world as she sees it: a place full of joy, colour, and the delight of life with her family and friends.

Approaching her daily life with enthusiasm and a dry sense of humour, Rita rides public transit to her job working at a university coffee shop. She takes yoga and folk dance classes and enjoys art, drama, and music at a day program. When it’s time to celebrate holidays and the birthdays of those she loves, Rita likes to mark the occasions with paintings and handmade cards.

I have had the pleasure of receiving one of her early edition books and some beautiful hand made cards that she included as a thank you.

Follow Rita

FOLLOW Rita on her promotional Facebook page at  https://www.facebook.com/RitasArtBook

You can also FOLLOW Rita on Instagram at  https://www.instagram.com/ritawinkler82/


Use Your Words for #BellLetsTalk Day

#BellLetsTalkDay

Through these challenging times we can all pay a little closer attention to each other and our mental health and wellness. This #BellLetsTalkDay is a great day for you to just listen a little more intently to the phrases and comments we make that have just become part of our language and lexicon.

Phrases and Words

I'm referring to those phrases and words that perhaps perpetuate the stigma or context of mental wellness, or those facing personal challenges.

I'm raising this in a light-hearted context, but concerning a serious matter. The matter is our concern and promotion of all things mental wellness, mental health, mental illness, mental stability, stable mindedness. The list goes on.

I am referring to some of those phrases that you might give a second thought to, as you reference them today and from this day forward.

Let's be more sensitive and more present to those words and situations that may actually be more "sensitive" than what meets the eye. What appears on the surface, is not always representative of what is below the surface or on a person's mind.

Someone may actually need your help, assistance or empathy if they are facing or dealing with a mental health matter.

Here's a short list that comes to mind. You might have others to add.

"That's just crazy"

"Are you out of your mind"

"Are you nuts"

"Are your meds working"

"Are you off your meds..."

"Who do you think you are..."

"Wow a little schitzo"

"That's a downer"

"There's a dark cloud hanging over them"

"You look panicked"

"She / He is a maniac"

"Just the ups and downs of life"

"That is just psycho"

"They are disturbed"

"Why so negative"

"wow, they're in a bad mood"

"A few screws loose over there..."

"That's just insane"

"They are a little skiddish"

"They are a little odd"

"That seems a little loony to me"

Did you catch yourself from the past making a comment, or thinking one of these phrases, or another?

Thanks for helping make a difference today and every day in promoting mental wellness.

#MentalWellness the #BellLetsTalk day.

Conclusion

I often refer to a statement I saw at St. Paul's Hospital in Vancouver - "If we take the I from Illness and make it a WE for wellness we move from Mental Illness to Mental Wellness". Let's not leave anyone alone.

@fergdevins

 


Christmas music

When the Christmas Tunes stop playing on the radio

...are your passengers demanding another station yet?

This season is truly one of the most wonderful times of the year. Christmas tunes start to appear as a constant track of music on many stations on or around the date of American Thanksgiving. They have even started a little earlier with some stations, given this unique year and its challenges.

Some stations are reported to start playing Christmas music non-stop on November 01, right after Halloween. By the time boxing day rolls around, it is almost a relief when they finally stop playing Christmas songs on the radio. There are lots of variations of our favourite tunes. However, there seems to be that relief following Christmas Day when the stations with the holiday music revert back to top tunes of the day.

Sirius/XM Canada have a few different options for holiday music listening. Some come to an end with boxing day, while others will remain on track until December 30th.

In Neil Pasricha's "The Book of (Holiday) Awesome", he refers to this as an "awesome" moment, "Because at some point we all stop caring what Bing Crosby is dreaming about".

Regardless, there is truly something special about the wonderful tried and true tunes of Christmas, as well as the new versions and recordings of present-day artists. One of note again this year is the wonderful work by Gentri Music. It reminds us of the holiday joy that we experience through the singing of Christmas tunes during the holiday season at Christmas. These lads have done some masterful work, and some amazing holiday videos as well. It was also very inspiring to see the Holly Dolly Christmas special and the release of the Dolly Parton holiday album - a first in 30 years.

Here's to your listening pleasure this holiday season and all year round. Enjoy those special tunes these last few days of the 2020 holiday season.

@FergDevins