Building Our Support Teams: You Are Not Alone
I clearly remember the day I was given a diagnosis of bladder cancer, a type of cancer I had never hear of. I soon discovered that bladder cancer was not one that people openly discussed. We rarely talk about bodily functions unless we are under the age of about 5, when it is a main topic.
My head was definitely spinning because I had no idea where to start. Was my only option for more information spending hours online? Or were there actually others out there with my same cancer diagnosis? Being told you have cancer is devastating enough without feeling that you could be heading down this path alone.
Building your support team
I decided fairly quickly that I needed more information which would probably require telling those close to me of my cancer. I knew I would definitely benefit from a variety of support and guidance. I needed to navigate this journey both physically and emotionally. After absorbing my diagnosis, I began to put together my support team.
The medical experts
I researched experts online and opened up to very close friends for suggestions. My family was quietly asking around for recommendations also. I was not ready for my diagnosis to be public.
Fortunately, the local urological/oncology team that I had been seeing since early on was also the most highly recommended. I felt comfortable with this group as they were compassionate, caring, and skilled. The surgeon who performed my bladder removal procedure in the end had a lengthy record of successful treatment. He also was the first in NW Ohio to use the DaVinci robotics approach. Having an expert medical team significantly reduced the anxiety associated with my diagnosis.
Family is emotionally involved
My daughters were always there for my appointments. They held my hand while I waited for test results or prepared for surgeries. They spent endless hours in hospital waiting rooms during my surgeries. They prepared meals, picked up prescriptions, and walked miles with me each day to reduce my recovery time and help me gain strength.
My family did whatever it took to make things easier whenever possible. I neglected to realize that they were also be having anxiety. My cancer was not something they could make disappear, so they were very emotionally involved. It was clearly important to have my family be part of my support team, but I did not always see the strain it placed on them. They were there for the challenging times as well as the days the news was good.
Close friends are like gold
Who do you trust to help and be there for you when family is not or cannot be available? Good friends are worth their weight in gold at difficult times. Friends will be honest and upfront without being as emotionally involved. They will provide some of the best insight you receive. Most importantly, friends make sure that every moment is not spent with cancer being the only topic of conversation.
Survivors tell you exactly how it is and what to expect
I would not be where I am today without the people I met on this journey. I met Pat online literally a day after my diagnosis. She spent endless hours calming my fears, always telling me she was a phone call away. I found survivor chats online and read probably more than I should have. I have met hundreds of people while attending bladder cancer events over the years. Survivors can honestly say they have been through what you have. They know exactly what you are feeling because they have felt the same way. They are not emotionally involved as your family and will honestly and without hesitation be truthful in response to questions and concerns. Their perspective is from being much farther along in the journey while you are at the beginning. Survivors are an invaluable source of information and comfort.
Find the support you need
Look for a support group in your area if possible. It is amazing how quickly you will "click" with another person in these settings. It is like having an older sister or brother who can honestly say, "Been there - done that."
Your team of supporters and experts are there to help you up, to understand on those days when you ask "why me?". They will sneak in a treat that is definitely not allowed and plan a great reward when this is all over. Most importantly, they are there to always remind you that, "YOU GOT THIS!"
Have you talked to your doctor about navigating sex with bladder cancer?