One of the lessons I learned about being the caretaker for someone with cancer is that everyone fancies themselves a medical professional. Oh, they don’t boast themselves as such. But everyone has an unscientific opinion about the causes of cancer and its cures based on hearsay, popular “science” articles, natureopathy, conspiracy theories, and, yes, even spirituality. It’s frustrating as fuck. Sorry for the language, but as a caregiver, I’ve heard it all and the language is totally appropriate.
First and foremost, there is today a general mistrust of science and the medical community. I don’t understand why — it could be the dumbing down of our nation of the late, or it could be just that people don’t understand science or the scientific method at all. I won’t even wager a guess as to where it comes from. But I’ve heard it all from abstaining from sugar to CBD oil (or even just straight marijuana, cuz yeah, pot is the magical cure for everything, don’t you know).
What is most affronting is the fact that instead of saying something like, “Oh, I’m sorry for this terrible diagnosis you received. I’m at a loss for words,” people immediately start pinging you with articles about special diets, prayer circles, and latest scientific research (the latter of which would in fact be helpful, except you aren’t allowed to just start taking medications that are currently in clinical trials — there is a qualification process to that — and not all medical research is available to you at all times). I know that people are intending well, but as a caregiver, this intrusive passing along of information makes you feel completely inadequate. As if you weren’t doing everything you can already to get your loved one to the best care possible. And believe me, I’ve done everything within my reach to find a cure for Crow (within the range of actual scientific discovery and medical care currently available; I do not try wacky hearsay homeopathic “cures” cuz, sorry, not real science).
The conspiracy theorists are the worst. They fill your head with misgivings about the medical community and your doctors. And even though you know these people are full of bunk, it still sits in the back of your mind as a judgement on your caregiving abilities. Maybe pot is the cure for everything, you think in the dark hours of the night when your mind is over-reacting to everything. What if there is a cure they are holding back?
Of course, that is totally dumb. Crow’s neuro-oncologist at the Cleveland Clinic is probably the kindest, most compassionate doctor on his care team. He’s the only man who handed me a kleenex on the day of Crow’s diagnosis when I couldn’t hold back and he looked pained and almost kind of tip-toed into the room. I will never forget him for that. He always sensed when I needed kleenex every day after. He called me after hours when I had questions and he worked with us to find the best treatment plan for our lifestyle. There is no way in hell that I believe that this man would withhold a cure if he knew of one that exists. He’s on every tumor board, reads research, attends conferences — this man wants to find a cure for glioblastoma, I can feel it in his gestures. You could ask him about anything related to glioblastoma research and he’d give you all the information he had about the effectiveness of that treatment. I think at the end of the day he might have even respected my informed questions. I was really good at biology in high school. I get this stuff on some level. I’m not your average caregiver, going along with the flow.
The biggest piece of non-scientific advice people dispense is in regard to sugar. For some reason, some wacko got it in their head in the past that because tumors feed on blood sugar, that abstaining from sugar will starve the tumor. I point blank asked several doctors on Crow’s care team about this and they said it wasn’t true. I even looked it up on the American Cancer Society’s website and it is in fact listed under the myths about cancer. You will always have sugar in your blood, no matter what you eat, because a lot of food turns into sugar. The tumor will find a way to feed itself. The only link between sugar and cancer is obesity, which in itself is a cancer risk. (I know a million people will want to debate me on this by sending me links to sites that say differently, but whatever, I will check your sources and honestly a lot of stuff on the web is propaganda and not real science.)
I think the real kicker is the way people talk authoritatively on the subject, as if they really know. They will tell you to give your loved one [insert magical cure] as if it is the only thing that will save them. And, of course, that the medical community is hiding something so that BigPharma profits. Whatever. I’ve heard it all and I’m sorry but I think it’s all wrong. I don’t believe in conspiracy theories — too many people would have to know and, as they say, two can keep a secret so long as one of them is dead. But thanks.
Prayer. Another popular cure. Because somewhere in here the magic of deity can rescue you if all else fails. First, I don’t believe a god, at least not the kind of god described in any text in any earthly religion I’ve encountered. The god of those texts always has some sort of agenda, most of which benefits only those who follow him/her. No thanks, again. Second, if there was a god, and he/she did have the ability to randomly honor some with a cure, it seems to presuppose that said god gave the illness to a person in the first place. Who would do that? I suppose if you believe in good and evil, maybe evil causes disease. I don’t know. This is too much theology for me. So I also find theology a bit offensive, especially because people use this time — now that someone has a terminal illness — to first assume that you believe as they do, without asking, and then they thrust their faith upon you. And if you say, “Thanks, not a believer, but the thought is nice,” people often want to debate the subject with you. It really puts a person like me in an awkward position.
I’ve been approached about religious subjects from people with whom I did not even formerly have a relationship that included a topic of religion. And they felt like it was fair game to bring up these topics. I assume people think they are being a help, but again, it’s like when the Jehovah’s Witnesses knock on your door and demand to talk — you just want to get them off your porch as fast as possible. Because no one wants to discuss religion, no one, except maybe your church friends, so please, please stop. Crow’s faith has always been very casual, and he frankly never liked talking about religion, even though he said he was Lutheran, so it was awkward for him too.
Cancer becomes a community spectacle, it seems. And I’ve not at all liked this part of the disease.