When “Helpful” Words Are A Burden…

Alone

I’m frustrated with the things people around me think and say.

They don’t even read outside their spammy, fringe tabloid websites. And yet they dole out advice like a knowing sage. Like I’m not killing myself reading every medical study on glioblastoma that I can get my hands on. Asking every intelligent question I can to milk every answer from the oncology team at MD Anderson. Reading journals on everything about brain development, brain damage, traumatic brain injury, stroke, brain cancer, brain recovery, and everything that could possibly be related or help.

You know nothing about brain cancer, John Snow. Much less about glioblastoma. And you know nothing about the depths of my love and dedication to John either.

“Everything will be fine, you’ll see.” Like my husband’s not hanging off a razor’s edge, facing something serious and “cancer is so curable today.” Like if he stopped treatment today, he wouldn’t have just mere months left to live. Like it’s not such a big deal that my husband wants every moment with his kids he can get. Because he doesn’t know how long he will be able to remember things and communicate. How no one gets that “mind over matter” doesn’t work so well when your brain is being attacked. And then again, just because your brain is being attacked by cancer doesn’t mean that you have dementia. Or that you’re crazy. Because it doesn’t. They aren’t the same.

Even cancer survivors of other cancers say things like, “Just have faith, that’s how I cured my cancer.” “I know you’re just trying to fill up your schedule so you don’t have to think about how helpless you feel.”

I know plenty of people, more faithful than I, who are now dead. And NO. I don’t want to be this exhausted as a wife and mother. I don’t need more work to do. I don’t want to be this afraid that I’m not filing disability correctly, this overwhelmed about yet another phone call from disability, or whether I have forgotten to see to some benefit that we might lose because John cannot work anymore. Whether I’ve filed everything correctly and whether I can find it all when I need it next. Because the last 9 months has been a string of hospitals, surgeries, stroke and crisis. And I can’t remember details like, where could that paper be? if it wasn’t filed properly from the get go.

How afraid I am that someone at the grocery store is going to ask me how my day is and I’m going to burst into tears right there. How I wish I didn’t have to do all the shopping.

I am NOT trying to fill a void. I am trying to navigate all the paperwork, be two parents, communicate for my love who cannot advocate for himself completely, feed and drive everyone to everywhere while family and friends have mostly dropped off as far as help. In the beginning they overwhelmed me while he was in the hospital and there was nothing I could give them to do. Now when there are no nurses to help, no one to help fix meals, clean house or run errands, and when all the bills are showing up due, everyone’s busy.  I’m trying to capture every moment I can, but I’m overwhelmed by how much work there is to do, and how it’s stealing every last-minute I have with John and even with my kids, away from me.  And every moment of joy from me. I don’t have time to breathe, much less sleep or take a break and get a haircut. I have trouble remembering everything. I’m so tired I’m getting slower at everything. I begin to wonder if I have brain damage too. In reality I know I need to talk to someone, but there’s no time for that either. Anticipatory grief is there too. And it doesn’t mean that I’ve given up hope, or that I don’t believe in God. But I do know the reality of the battle. I do very well know the stakes.

I’m pretty damned good at researching and calling companies, asking for help, asking to talk to the advocacy departments, but I am alone to deal with all of this. While my hubby complains that he doesn’t get to spend enough time with me because I’m always on the phone sorting out our insurance, or on the computer paying bills, printing forms, answering emails from teachers, and still working from home, like I have for years. But it’s all so hard when I never get even an hour of dedicated time to focus. My day is constantly divided. And I’m constantly having to worry about what my hubby is doing. Making sure he hasn’t forgotten his medicine. Making sure he’s not seizing.

And I feel so guilty. For everything. I’m a failure. I’m not succeeding at it all. I’m a responsible person who has tried to lead an honorable life. And I’m failing.

It’s not fair. None of it is. And just because I burst into tears on occasion under the strain, doesn’t mean I have a bad attitude, that I’m living my life in a negative state, or lost my faith or that I’m not dealing with things as well as I can.

And then on the other hand, it’s all the advice.

“Have you tried NOT doing chemo? I’ve heard it’s worse than the cancer itself.” Um, have you read ANYTHING about Glioblastoma??

“Make him eat alkaline foods. Cancer is caused by acid.” Primary brain cancer is a different animal. Please read up on it before you tell me what you think I should do.

“Is he listening to enough classical music for his brain to recover from the stroke?” “Don’t let him watch too much TV.” “Keep his blood sugar low.”

I mean geez, you’re not here living through this or taking care of him! His blood sugar is already low because we’ve been paleo for years. And too low triggers seizures and stroke. Additionally, that Keto Diet you read about was modified into essentially a paleo diet (without the organic focus) and found to be as or more effective for brain cancer patients! And easier to live on. And it’s boswellia EXTRACT, not essential oil that showed promise as a potential assistant to chemo. Turmeric needs black pepper to be absorbed properly. And Vitamin C infusions can be incredibly dangerous if your blood isn’t tested properly first, and it definitely cannot be carried out at the same time as chemo.

THESE PEOPLE HAVEN’T STUDIED ANYTHING.

And I’ve had a belly full of it lately. :/

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