Living with No Evidence of Disease
What happens when you are told, "Congratulations, you have no evidence of disease!"? Of course, you are elated, relieved, happy, and perhaps a little overwhelmed and a bit confused.
They said my cancer was terminal
Terminal. They said it was terminal, so how can I now be NED? How can I have outlived my prognosis? Please don't misunderstand; I'm not being ungrateful, not being a drama queen. I'm trying to be honest with you all about how it feels.
The physical and psychological effects of cancer
We are all living a lot longer thanks to earlier diagnosis and better treatments, and that is just fabulous. However, there is a flip side to this, and that is the emotional and psychological effect that cancer has on you. Oh, and let's not forget the physical effects cancer leaves you with.
Living with an "incurable" cancer
For me, having metastatic small cell bladder cancer meant I was told that I wouldn't be here for long after my diagnosis, and yet, here I am nearly 4 years later. That can mess with your mind! And it does, regularly. One day I will be having a fabulous day. Ticking everything off my to-do list. Having cooked the evening meal and cleaned the house (ok, so not to my standard a few years ago but to my standard now - the standard that I can manage). Anyways... where was I? Oh yes - on this good day, I am able to convince myself that I will remain a walking miracle and that this evil small cell cancer will never come back, and I will live to tell the tale.
It's hard to accept the NED me
But the very next day, I can convince myself that I have a lump growing on my leg or that my glands are swollen, and I am positive that the cancer is back! Where does that leave me? Unable to work due to my health, as it seems that every single organ in my body appears to hate me. It's hard! Hard to accept the NED you. Physically you may find, like myself, that you suffer from other conditions, or perhaps you still suffer from chronic fatigue, or are still in pain due to treatments, or all of the above!
We barely have time to process our experiences
Everything physical comes from the trauma our bodies and minds have gone through. Every scar is an imprint of our treatment. We barely have time to process everything we go through until after treatment. Don't be hard on yourself if you find that you are constantly worried about the possibility of recurrence.
Going through the motions
How can our minds understand everything our bodies have been through? I have spent the last 3 and a half years "living" because I was told I would die, but have I been really living? Or have I just been getting through each day?
Our lives don't go back to normal if we're NED
We need to be more open about how we find life after treatment, being NED or even in remission. We don't just bounce back because we are told that, for now, we don't have active cancer cells in our bodies. Our lives don't just go back to normal. We may become more anxious about life. We may become more reckless or yearn for a much simpler life than the one we had before. If you are struggling, then please seek some help, either from your doctor, support group, or more professional help if you need it. There is absolutely no shame in asking for help. The shame is that society still treats mental health as a taboo, although it is getting better now.
I have to take time to rest
I have started to realize that I HAVE to take rest days, even if I don't want to. If I put up a fight then everything takes twice as long, and I am using that much-needed energy. So, it pays, in the long run, to give in and take the rest day.
Adapting to our new lives
Isn't life about learning, growing, evolving and adapting? Cancer is no different. We learn to live with our new lives. I feel that we grow emotionally, we become stronger, we realize that even though we didn't choose this cancer for ourselves, we can adapt our lives and that this is our chance to live our lives how we want to.
How well does your healthcare provider understand your bladder cancer?