What You Don't See: The Invisible Reality of Bladder Cancer
Last updated: March 2021
What do you see when looking at me? You might see a middle-aged woman with various ailments. You might see a fat woman who appears not to take much care of herself. You might see a happy, smiley lady. In those first 30 seconds, you have already made your mind up about me. You have already judged me on my looks, but looks are so deceiving.
The struggle is real
What you don’t see is just how hard it is to get out of bed some days. You don’t see that I have to pull on the radiator to yank myself out of bed as the muscles in my legs are stiff and solid. You don’t see the tears I cry when my legs are so painful during the day.
I’m cancer-free, but scared it could come back at any time
You don’t see the struggles of living in “limbo land”. Yes, yes, it’s great to be NED (no evidence of disease) but physically, emotionally, and mentally, it all takes its toll. Having to live a different life to the one I had before bladder cancer. Trying to find out where I fit back in this world and accepting new limitations that I hadn’t expected.
Bladder cancer isn’t my only health problem
You don’t see how I am struggling with my arthritis in my hands and how every time I crochet or create something, my hands seize up and become claws, as well as how they are swollen most days.
You don’t see the fear
You don’t see or feel how I feel on the days when I am so down that even my husband can’t make me laugh. The paralyzing fear of recurrences that can take my breath away. I try not to go here too often; I know that staying in this place isn’t healthy.
Worries about the future
With every scan or appointment, it’s yet another reminder that I am not out of the woods yet and that this will continue as long as I am alive. The cancer won’t ever not be in my future. You don’t see how every now and then, I get frightened for my future. Will it come back? If so, when? 1 year? 2? 3? 10? 15? Never? (Fingers crossed!) Yes, I know we are all in the same boat; none of us know when we will die, but I just wonder if the cancer will kill me or will it be my heart that gives up?
Smiling through the pain
You don’t see that I need to nap after I have done something physical. Nor do you see how much strength it takes to go to that party or gathering, or how I then have to take a day of rest before I can attempt anything else. You don’t see me gritting my teeth through the pain of everyday life. Even with a smile on my face, because I’m lucky, right? I am alive and my heart is still beating, so surely I should be grateful?
Guilt and frustration
You don’t see how frustrating it all is when I have made plans and have to cancel at the last minute due to feeling bad. And GUILTY! It’s the guilt that makes it hard. No matter how awful I feel, it is still upsetting when I am unable to go anywhere due to this body. My mind thinks it’s okay, but my body has other ideas.
You don’t see how breathless walking makes me, and how I struggle to get up the stairs. You don’t see me having to take a moment to sit down or the tears of pent up anger as I constantly compare myself to others (this is a bad habit to get into).
Please don’t label me
I hate those words, “thriver” and “survivor.” I don’t want to be in this cancer club! I don’t want to be labeled. I know I won’t ever be the same person I was before cancer, and I am trying to accept that, but these words don’t help. I am not a “warrior”. I am not “brave”. I am simply “me,” and I will get through everything that life throws at me because I HAVE to. I have no other choice.
And the moaning goes on and on
I feel that I moan or whine all the time. There is always something that hurts, that restricts my life in some way or another. I often feel that I am ungrateful and then I look back at this sh***y journey and see how far I have come. No, not I - how far ‘we,’ the hubby and I, have come.
The unspoken side of cancer
I hope that by writing my articles others may understand what their loved ones go through. Or perhaps, like me, you too felt ungrateful and guilty about the ‘real’ side of this cancer? I think that we feel we have to be positive and strong and then when we fall apart or have a blip, we punish ourselves because we shouldn’t be thinking things like this, we should be eternally grateful at still being here. Well, that is a load of rubbish!
It’s okay to scream and cry
Have your down days, your laying-on-the-sofa-eating-chocolate days. Have the days when you cry your eyes out because you feel that you have to or else you will explode. There really isn’t any shame in that. It doesn’t mean you have failed at life, it means that you are adjusting to your life. The emotions have to come out in some way or form, so let it go! Cry, scream, shout about how unfair it is; you are allowed. It’s not feeling sorry for yourself, it's expressing all of your emotions, the good and the bad. Remember: everything is relative, and we are all different and experience different feelings in our life journeys!
Rely on your support network
I know that I am truly lucky for my hubby and my family. They have been through a whole range of emotions just as I have. Keep talking to your support network. Tell them what you are scared of. We found our lives being turned upside down and faced some pretty awful situations, together, as a team. My family have given me strength when I needed it, and love, oh so much love. They have kept me safe. Together, we have become a pretty tough team.
Focusing on my purpose
I have found my strength. I have a voice and a pretty strong one at that. People listen to me, they read my articles, and so as long as I continue to relate to others and spread the word about bladder cancer, I have my purpose. You will need to find yours. Maybe you could go back to work, or perhaps volunteer for a charity. As we all know, cancer changes your life, for the worse AND for the better. I bet you don’t worry about material things anymore. And I bet the small, trivial things still annoy you a little (go on, admit it).
Becoming a better person
I personally think we come out of a cancer diagnosis with a greater understanding of life and what it means to live. I feel that we appreciate life with more sincerity than we did before. I know that I have. Whatever stage you are at right now, I wish you strength and love.
How long did it take for you to receive a bladder cancer diagnosis?