A Letter to My Bladder Cancer Friends
Dear Fellow Bladder Cancer... well, I’m stuck here. I don’t want to put “sufferers” or “patients,” so I’m going to put “Friends”.
The struggle is real!
As Bladder Cancer Friends, we carry so much on our shoulders, regardless of what “type,” “grade,” or “stage” we are at. Regardless of it being superficial, muscle-invasive, or rare, we all are too aware that the recurrence rate is HIGH.
Some may think it’s the “Cinderella” of all cancers, or that it’s the “best” cancer to have (yes, I really got told this!). Some may even think that it’s “not” a proper cancer.
We are some of the toughest people around
Well, let me educate you. I feel that we, Bladder Cancer Friends, are some of the toughest people around; we have courage and strength bursting out of our souls!
Why do I say this? We live in constant and perpetual fear of a reccurrence; we face ongoing scans for the rest of our lives. I don’t like the word “warrior” being used for “cancer patients,” as I do not see myself as a “warrior” or “one of cancers little soldiers." I think they are patronizing and condescending. For me, a “warrior” is someone who wears armor and protects their divine right to survive, so I guess when I write it down like that, in black and white, we ARE WARRIORS!
It's not the most glamorous of cancers
And it’s not like it’s the most “glamorous” of cancers, is it? It’s our bladders and pee, the things you shouldn’t speak about while at the dining table, not a great dinner conversation. But, perhaps that’s where the problem lies? We need to “normalize” it; we need to get others to speak about it and not be “embarrassed” by doing so.
As Bladder Cancer Friends, I bet all of your families are aware of the signs; they know what “color” our pee should be, and they know the pain of having to get up 50 gazillion times a night. They know when you are in pain or discomfort by the tone of your voice or the way you pull faces. I guess, just like my family, they are telling others about “your” journey, and in doing so, we ARE spreading the word, we ARE doing our bit to educate and warn others. Just sometimes, it doesn’t feel like I’m doing enough, I don’t know how you feel?
Our bodies are altered
All too often, we have our bladders removed, which let’s face it IS a life changing experience; our bodies are “altered”. And while some of us opt for a “bag for life,” some opt for reconstruction, called a “neobladder”.
I can’t tell you, from my experience, what a neobladder is like as I feel that I chose the easier option; however, from what I have read and heard from other patients is that it does take while to get used to it. It involves “self-catheterization”, setting your alarm to wake you up in the night to go to “pee”. What a reminder of what you have just had to go through! What a reminder of your journey with Bladder cancer... and it’s there for the rest of your life!
The alternative doesn’t really bear thinking about does it? A bag of pee protruding from your tummy, or the self-catheterization every few hours... or death!
Even with a bag, the first few weeks and months are full of 2AM leaks; you are still recovering from the operation and having to deal with so much. All of this and no “help” to get used to your “new” self image.
Living under a black cloud
We do all of this to have our “normal” lives back. We have to live with the “black cloud of doom” that hangs over us, every single day. We undergo treatments that only give us a 50% survival rate for “normal” bladder cancer! We live knowing that at any time, this evil and disgusting disease could show its ugly face.
We try for the most to “get on” with life, as we have no other choice. The road seems rocky, with such highs and super lows. We tell ourselves that “we are ok” and if we aren’t ok, then “it’s ok to be NOT ok”. Every twitch, every pain reminds us, that we have cancer. I guess that even at 5years, which is considered “remission” for a lot of cancers, we are aware that it could STILL come back!
Determined to make our lives worth living
We deal with a lot, physically and emotionally, day by day and week by week... We smile and laugh, determined to make our lives worth living, and to remind ourselves to be grateful that we opened our eyes this morning. All while carrying the huge burden of knowing that we may never stay free of our cancer.
What a weight to carry! So, Bladder Cancer Friends... I salute you: for staying strong, for adjusting well, for never giving up, even when you want too... and just for being “YOU”.
Love and hugs,
How long did you wait before telling others about your diagnosis?