The Things You Don't See

In talking with one of my online support groups recently, a very important topic in the brain tumor/cancer community came up. Perhaps one of the hardest things we as patients have to deal with is helping others understand our day-to-day struggles. After the surgery is done, the hair grows back, and the visible signs of the tumor are gone those around us can often forget that there is anything wrong with us. They don't see the cycle of worry, fatigue, cognitive difficulties, anxiety, depression, and sorrow that we live with on a daily basis.

The brain is a very sensitive organ and when it is affected, it affects every part of your entire body. While we might look normal on the outside and maybe even act normal at times, on the inside we are often facing many things we don't quite understand or know how to deal with. Tasks that once came so easily to us, we now have to struggle to do. We worry about what the next scan will show and that each new "tremor" or change in ourselves can be the beast returning. While we try not to focus on statistics, we are aware of them and that there is no known cure just lots of hopeful ideas. Everything we do is a struggle and when we have our good days we often pay for them with days of fatigue because our bodies and brains no longer recover as they once did. I often find that I either have a good "brain" day or a good "physical" day but rarely do I get both in the same day. Doing everyday tasks like balancing the checkbook and paying bills can be the mental equivalent to running a marathon without first training for it.

Finally, while many of us know that we have to accept a "new normal" when we enter surgery, radiation, chemo, etc... just as you grieve for a lost loved one, we sometimes grieve for the piece of ourself that we have lost. Along with this comes depression, anxiety, and frustration. While we all know that life is never the same after a brain tumor diagnosis, it isn't always something that we want to accept but we have no choice. While some types of cancer or even illnesses can be cured or handled by medication or surgery, these are only temporary solutions in brain cancer. I've heard it said many times with other cancers, "Give me a year of your life and you can go on with the rest of your life," this isn't so with us.

Some of the people close to me would say, "but you are always upbeat and you never show any of this." Yes, you are right. I am perhaps a master of wearing a mask over my emotions. I find it easier to hide my feelings and struggles and discuss the superficial things in my life that I do to show my emotions and talk about what is really going on. It's easy to get caught up in the web of "no one can understand unless they've walked in my shoes." I'm hoping that with the change of my blog, this is something I can slowly help change.

Perhaps the hardest thing to openly deal with is the knowledge that there is no cure. Once diagnosed, we have constant reminders of this for the rest of our lives. It will perhaps never go away entirely. It's hard when we attempt to deal with the issues we know need to be dealt with. The things that everyone should deal with at some point in time to make things easier on their family when their day comes. However, when someone in the younger years aims to do the same thing, we don't always get a lot of support. We hear "death is inevitable and it can happen to anyone at any time." Isn't that all the more reason to start thinking about arrangements when you are younger because... you never know? One thing that must always be remembered... While everyone will die some day and no one knows when that time will come, those dealing with brain cancer not only knows this but they also know their days are numbered and no one has bothered to tell them the number.