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Finding Community: Helping Others with Bladder Cancer

Who would have thought that having cancer would change my life in a positive way? But it has. I am certainly not saying that I am happy I had cancer, but it definitely has taught me some great lessons.

I've been blessed with good health

As someone who made it to age 63 and never had stitches, one simple fracture at age 45, and still has my tonsils and wisdom teeth, I considered myself very lucky and very healthy. My parents both were in their 90s when they passed away, so I have the added benefit of good genes. When my cancer diagnosis hit, my good health definitely played a part in my decisions and quick recovery. But I also saw myself very differently. No longer did I take my good health for granted.

Reaching out to others with the same diagnosis

I soon realized that I needed to find others with the same diagnosis as I to discover how they handled treatments and recovery. I shared my personal story with people online who I would probably never meet in person, but they provided great relief. I kept in touch with many of these support people to see how they are doing also.

Opening up to strangers is a gift to you and them

After my recovery, I found that sharing with others who were just diagnosed and supporting them through their treatments was an amazing gift. As someone who does not normally share my personal health issues with non-medical people, I found that doing so helped them and lightened the weight it put on me. I joined sites on Facebook and local groups and freely commented. I traveled to other states to meet those dealing the bladder cancer. I was open with my urologist/oncologist about wanting to help others with my exact situation. They began providing my contact information to patients who could reach out if they chose to do so.

The positive impact of sharing my story

I began speaking at gatherings of cancer patients at the local cancer center and local hospitals. Best of all I attended a bladder cancer event in North Carolina and began helping with the annual arrangements of the event.

Even though I am 6 and 1/2 years post RC/IC (radical cystectomy/ileal conduit) and considered cancer-free, I am deeply involved in the bladder cancer community. Over the past 6 and 1/2 years, I have met hundreds of bladder cancer survivors and their families and hopefully have impacted their lives in a positive way. I found that sharing information with those with cancer as well as those without is healing. By being so open about this disease, I met others who I would not have. I have found that people reach out to me when someone they know has found they have bladder cancer.

Still learning at my age

The past years have taught me the following:

  • Do not assume - not everyone has heard of bladder cancer
  • It ain't over 'til it's over
  • Sharing information and treatment options is invaluable to you and others
  • Telling my story can comfort others
  • Though my doctors consider me "cured," I still continue to help others each day
  • The people you meet with the same illness become amazing friends
  • Just being able to say "been there, done that" means a lot to someone else
  • Being only a phone call or email away is of great comfort
  • Some things that happen when you have cancer are actually funny - (I will expand on this later)
  • Survivors do not spend all of their time talking about cancer - we have fun
  • Your family and friends mean more when you have survived a disease like cancer

Continuing to help others with bladder cancer

Though many people prefer not to share such personal information with those who are not close to them, I found it extremely beneficial to me. As I continue on my post-cancer journey, I hope to continue to meet other members of the bladder cancer community and to positively impact those affected by this disease. The reality of it is that we are all in this together.

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