Brain Cancer Life After Emergency Mode: Room For Improvement

Brain cancer patients are already in a pretty small group but the numbers of those who surpass the emergency mode stage are even smaller.  I’m in that group and am glad to be outside of emergency mode, but being past it has many challenges too, and often comes with less understanding and support.  It’s my hope that positive changes are on the horizon.

To begin, I’d like to offer a synopsis of my personal experience IN emergency mode as a comparison to life after it.  Being diagnosed with brain cancer was a very powerless time when I had no idea what was going on. For once in my life there was no action I could take and I merely existed, which was a very powerless feeling.  The diagnosis itself was a quick punch in the face, but then dealing with it was nearly impossible because the lab work and appointments took forever, and it’s, “hurry up and wait, but try not to panic!”  I had surgery, so part of my brain was now missing and the rest was swollen, so everything was fuzzy and different. Medicines filled my body and mind, and people kept asking me questions.  Life- it’s value, love, regrets, dreams, all of it flashed before me, kept me up at night, and overwhelmed me.  So much pressure that I, “Just… Can’t… Think!”

I’m glad that part is over, but I also want to acknowledge the positive elements of emergency mode. My family and I had an immeasurable amount of support, assistance, and love from friends, family, and the community. We had meals prepared and delivered, visits, and help with transporting our children. We were in many people’s prayers and thoughts and received a lot of kindness.  Some of friendships were strengthened and developed during this very difficult time. Even strangers came forward with kindness and support.  I am very grateful for all of this and want to hold that part deep in my heart forever.

I see numerous cases of other people giving and receiving positive assistance in the emergency mode stage through other connections that I have.  In my opinion, society does a much better job with brain cancer emergency mode than with the new normal, or what I consider the Brain Cancer Freeish stage.  I continue to be grateful for my personal love, support, and societal understanding during emergency mode, but would like to address the “room for improvement” moving forward.

The next step in my cancer journey, life after emergency mode, hasn’t been easy either.  Many, if not most, people don’t know a lot about this time in life, possibly because a lot of people never make it here. It’s a new arena for almost everyone involved, the patient, family, friends, and society.  There is a “dream destination” expectation after emergency mode that everyone thinks is going to be bliss but actually isn’t. It’s definitely a step up, I want to be clear, but the work isn’t by any means over and empathy, understanding, and willingness to learn by others are greatly diminished.

As a brain cancer freeish patient, you’re doing some healing as well as some recognition of changes that are likely to be permanent.  You’re coming to terms with your life goals and predicted timeline and trying to figure out how to get everything in. Normal life schedules and events reemerge and yet your abilities, energy, and intentions may change, and that alone can be challenging.

There is also a shift in support and understanding. In emergency mode, people don’t focus on your challenges as much and are just grateful you’re alive.  But after emergency mode when people identify your challenges more, a number of them just look at you blankly, drift away, maybe smile and say something nice in a transactional way, but then leave.  There is a lack of effort to try, or depth when they do. You kind of feel like a thing rather than a person, and it often feels like living in a glass cage.

Some specific things some people that know or just found out I have cancer do that annoy me include talking to me loudly, or slowly, or over-annunciating their smaller words (?)… I could totally write a Saturday Night Live skit on that…  Anyway, there’s that, and then there are those who eye me up like they think they’re going to replace me- they do this in my face! Seriously. Then there are the ones I kind of feel bad about mentioning because I know they mean well, but the ones that are so sorry for you that they make you second-guess your own self esteem. Oh, yes, and then those who go on and on and on about how hard this must be for my family. What am I supposed to say? “Yeah, I so selfishly lived,” or, “Um, thank you. For ten fucking seconds I was enjoying life and feeling grateful. How dare I? Thank you for setting me straight! You don’t think I don’t spend every other second besides that vaca 10 you just ruined worrying about and trying to support my family?”

I’m sharing my own negative experiences and feelings because I want to represent these for others who can’t and because I want to find some way to make it better. My specific experience doesn’t cover everyone. Not only are individuals different but so are support systems and the changes brought on by brain cancer. People are so complex anyway, then when cancer takes over and/or surgery takes out part of the brain it’s even more complex. It’s not like other body parts at all because the brain controls everything. So two people could have the same type and size of brain cancer but in different parts of the brain and have very different outcomes. It’s not even, “what’s it like to have brain cancer?,” more so, “what’s (insert name) going through?”.

So what’s the point? Please acknowledge that no two patients or support systems are identical. Learning is imperative in post-emergency, Brain Cancer Freeish mode and that applies to everyone- patients, caregivers, society, the medical community, basically anyone who cares. Patients, you will need to get to know yourself now and identify areas you’re challenged in. This information is a first step to knowing where you need help and support but even more importantly, learning to deal with these challenges yourself. Everyone else, the only things that apply to all patients is the fact something is harder or different now and the fact that you care. From there everyone and everything is specific and you may need to ask, observe, even experiment with how you can give help or support. Some things may be obvious, such as if a person lost their driving privileges or abilities they probably need help with transportation and errands, but others are not obvious and you may need to ask.

For me, some specific memory problems and proper noun recall issues are the worst. Someone might observe that, but most people don’t in a brief conversation. It helps me if people I care about know this because I may temporarily forget their name or have difficulty coming up with a certain word and have to talk around an issue trying to get my point across. Sometimes talking to me can be like a game show, that’s what my friends, family, and I deal with when we communicate.

In closing, I hope that society in general learns that there are still changes and challenges after emergency mode and they are different for each patient and support system. Your heart is open to help, is your mind too?  Stay by their side and get to know some of their challenges, lighten up on the judgement- and be supportive as they strive to be their best in a continuously exhausting and difficult time. It’s harder for you too, yet I’ve also found it to be enriching for my family as it’s expanded their empathy, relationships, and overall treatment of others. I think they’re deeper, more caring people and I’m grateful they’re my family. Patients can give and take love as they go through their challenges. Caregivers can be that person for someone and continue to grow as their own person. Society and individuals can have positive and helpful interactions. Open your heart and mind, after all, we WANT brain cancer patients to survive longer, right? Let’s do it, let’s improve brain cancer life after emergency mode.