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Meet Roy L.

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It is September - a month where Autumn starts to creep in and it is also Prostate Awareness Month. With that, let's meet member Roy L. and learn about his experience with stage 4 prostate cancer and how he advocates for men with his blue mane.

WHATS NEXT?

For the past 15 years I seem to be asking that question too many times.  At the age of 7,  I was diagnosed with Juvenile Diabetes now more commonly known as Type 1.  It has been a struggle at times but I thought I was managing things well.  In my early 40’s I had issues with my blood pressure and things started to fall apart from there.  Not only with my health but in life as well.  My marriage fell apart, my mom passed, I was diagnosed with depression then nerve damage through the left side of my body and chronic fatigue.  I was unable to continue to work, had nerve surgery, blood pressure worsened, my dad passed, had to sell my house, diagnosed with celiac and then those words “you have cancer”.

 
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               My last 5k race before I had to give it up, yes I came in last.

At 53 I was diagnosed with prostate cancer after a trip to the ER with severe abdominal pain.  At first I wasn’t very concerned, but it would be months before I knew the whole story.  In March 2019  I met with my Medical Oncologist and got the whole story.  I had Stage 4 advanced PCa, metastases to my hip and femur, a 11 cm tumour and of course there was no cure.  I was started immediately on Androgen Deprivation Therapy (Hormone Therapy) and radiation to prostate hip and femur.  I had lost over 50lbs before treatment, but gained it back very quickly with the ADT.
 
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                                                                   My support group, son, daughter and son in law

I had some pretty dark days in the beginning of my treatment but through it all I had my kids and some amazing friends to get me through.  I could not have asked for better support than what was given then and continues today.  Whenever I needed anything, they were there.  Popsicles, Gatorade, a drive or just someone to talk to, they were there for me.  I also started to attend an in person support group for PCa and we have managed a couple in person meetings since covid started.  I asked my radiation oncologist how I could get in contact with others with advanced PCa.  He told me about cancerconnections.ca, what a game changer.
I didn’t jump right in but took the slow and cautious approach to my postings but kind of found a groove and felt more comfortable talking about my cancer.  I was asked to be a community mentor and since then I have tried to share my experience with cancer and of being a care giver to my dad who had Hodgkins Lymphoma.  The support and caring of this group is amazing and has been a huge part of my cancer journey.

The other big part of my journey has been my dog Harley.  She knows when I need a snuggle and when I need to get out and move.  Without her I am not sure I would have left the couch.  We enjoy our walks whenever we can get out, she really does keep me moving.

 
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                                                           Me and my best companion, Harley

For the first 2 years of my journey I received positive news every 3 months from my oncologist.  The ADT lowered my PSA count from 442 to 0.05, my scans showed no new metastis and my tumour shrunk to about half of the original size.  Today however I have 2 new metastis on my rib and shoulder, my rib actually fractured because of it, ouch!  My PSA has been increasing and now sits at 1.0.  September will be a big month for me as I get a new bone scan and see my oncologist to find out where things stand.  Fingers crossed.

One important thing this journey has shown me is how to be an advocate.  When I found out I had advanced PCa I vowed to get the word out to men to get their PSA checked.  If mine had of been caught early I know the treatment and prognosis would have been much different.  In May of 2019 I dyed my hair blue for a fundraiser called “Colour to Conquer”.  Well, that became my thing, blue hair.  I do it now every September for PCa awareness Month.  I get some weird looks but more importantly I get people asking why.  I love it when people ask me why.  I have also stopped asking whats next, whatever it is I will hit it head on!

Peace Love Cure.

Thank you for sharing your story Roy, for all you do on the site and for getting the word out whenever and where ever you can. And we will be keeping our fingers crossed right along with you.

 




Comments

Roy L.‍ Thank you for sharing your story. You’re advocacy is commendable, and you’re choice to live your life with positivity and grace despite our common cancer diagnosis and the struggles that go with it inspiring. After reading your post, I spoke to my husband and learned that he gets prostate cancer screening during his yearly Chrone’s colonoscopy. Thank you for spreading the word on screening and early detection. Peace.
  • Posted Sun 19 Sep 2021 10:50 AM EDT
Thank you for sharing you with us! Such a powerful story from such a powerful force on this site. You have helped so many here by just being you. We don’t have to be experts - we just need to be human. Thank you for your sense of humour, your honesty , your you! 💙
  • Posted Thu 02 Sep 2021 10:36 AM EDT
Hey elle29‍ Thanks for your post, bone scans have caught all my metatis, I had another one yesterday to make sure they have all spot before more radiation ASAP. I see my oncologist on the 13th so I am hoping its only the 2 new ones. Bone metatis is very painful so as soon as I mention any issues I get a new bone scan. I know you have alot on your plate, please take care of yourself and I wish you well.

Roy
  • Posted Thu 02 Sep 2021 06:23 PM EDT
Oh Roy L I am familiar with your infamous funny post about the baby furniture . I s the baby born yet ? Yes such a powerful survivor all u have been through and carrying in this monster 👿 c spread to bones 🦴 ribs . Yes and gorgeous family so proud of . U shared so strongly as though it was nothing nada 🏋🏽‍♂️! ! How did u know it went those places u did not say ? As I shakily text drained of energy to try to post here .Told more in my own monthly results . Sorry do not know where it says to comment but here .
  • Posted Thu 02 Sep 2021 06:16 PM EDT
Elbowdentist
thank you Roy for your story. You are a wonderful person. It is great that you are advocating for prostate awareness. My husband had an enlarged prostate but he had it removed in time. At least we believe it was in time. He’s been clear for 6 years now. Big hugs to your beautiful family. Is that a wedding picture? We have a dog too. They are such a special creation aren’t they. Keep strong. Lots of love.
  • Posted Thu 02 Sep 2021 10:07 AM EDT
Elbowdentist‍ Yes that was my daughters wedding 4 years ago. It's now down to 3 months until I meet my Granddaughter, we are all very excited. Glad to hear your husband is doing well.

Roy
  • Posted Thu 02 Sep 2021 02:14 PM EDT
Thank you all for the kind words, it is very humbling. I am so fortunate to have such wonderful people in my life. I appreciate the trust Lacey and Lianne had and have in me to be part of this team. I have always tried to be the person my mom expected me to be, although I think she would have been freaked out by the hair. She used to get mad at me as I was a very earth tone kind of guy, I disliked colour. Hope the hair makes her smile.

All the best and as always Peace Love Cure.

Roy
  • Posted Thu 02 Sep 2021 08:54 AM EDT
So thankful to have you @Roy L.
  • Posted Thu 02 Sep 2021 03:50 PM EDT
Hi Roy L.‍ and thank you for your warmn introduction. You have been one strong dude since childhood....I admire your srength and resilience with your positive 'bring it on' attitude.
Your hair is fabulous as is your sweet pooch.
3 months and counting until you and your granddaughter meet in person!!
law1
  • Posted Thu 02 Sep 2021 03:09 PM EDT
We are the fortunate ones Roy.

I bet your hair does make your mom smile, as it does us
  • Posted Thu 02 Sep 2021 01:00 PM EDT
Roy L.
what an inspiration you are to your peers, community & to your family.

thank you so much for taking on the task of advocacy.....it is such important work.

love the images: your dog is adorable, the kids look so proud of you, and yep....I am totally jelly of the blue hair....you ROCK IT!

all the best with the upcoming diagnostics

cheers
su
#peacelovecure
  • Posted Wed 01 Sep 2021 07:57 PM EDT

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