When I began blogging, I did not have a well-formed idea of what I wished to achieve. I merely started one as a way to create an identity to communicate with other bloggers. I’m not sure I ever set out to give advice to the newly diagnosed, and I hope I never did such a thing. I do know that as time passed, and the memories of treatment started to grow smaller in the rear view mirror (thank goodness), I became less inclined to say this or that thing did or did not help/work for me during diagnosis and treatment. When another woman in the support group would describe a problem, even one I’d faced, I was just not convinced I had anything of value to say that would help her (yes, the group was comprised of only females, not because males were not welcome, but because they never joined).
It’s not that I did not appreciate advice given to me in my first awful whirlwind days of diagnosis. Some things worked, other tidbits flamed out horribly. Heck, right now, I can only think of advice that didn’t work: get a wig, nope, rarely if ever wore it; chew ice during infusion to prevent mouth sores, no I wound up hating ice; buy button up shirts for after surgery, but while I had pain, I was still able to pull shirts over my head. No big deal; that is the way it goes. Part of my reticence has to do with realizing that I did not have it as bad or difficult as others. I engage in discounting, I talked about this very early on in my blogging days: see Could’ve Been Worse.
This history of “not so bad”, combined with 1) my tendency to push the panic button and expect the worst, 2) my view that it is impossible to know what anyone will feel/think/do until they are absolutely put into a certain situation and 3) my view of my cancer experience (diagnosis up to present day) as one in which I repeatedly ram my head into a Pink wall, makes me feel not so qualified to give any advice. I can tell anyone who’ll listen what I did about xyz, and if it worked for me or not, but…take it with a grain of salt. It may or may not work for you, I have no idea. I wish I could help, but I probably can’t.
In short, I am NOT the person to be a mentor to new patients, and have never signed up with any organization to be such a mentor. And never will. And again, if I’ve given advice on this blog, I’m sorry and please ignore it! Don’t ever listen to me if I ever start in with “take it from me, I did blah blah blah during cancer, and it was awesome/horrible….” I’m not saying ignore all advice; indeed, there are many bloggers or personalities in CancerLand who are good at this. By all means, follow their tips if you are so inclined.
That said, I am now going to say there is a piece of advice that has been popping up in the past couple of weeks in various online articles I read about cancer that I whole-heartedly, strenuously, emphatically, disagree with. I point out that I’ve only seen it in online articles because the funny thing is that the advice is…..newly diagnosed cancer patients should stay off the internet.
NO NO NO NO NO NO NO NO NO NO. The internet abounds with worst-case scenarios, and a panic button pusher like myself doesn’t need the help of the internet to imagine them. But I am still glad that I ignored that advice (because yeah, I was definitely told to not go to the internet). The problem was that I did not find and absorb the info that I know about now, and that is a great regret. Off the top of my head, issues like the is DCIS really cancer debate, mammography failures, making medical professionals inform women about their breast density, anything about HER2+ cancer, to name a few, I wish I knew about in the early doctor visits, so I could’ve asked better questions. The knowledge that I’ve gained from other blogs makes my head spin, and I often feel like I’m playing catch up when I get to the oncologist’s office.
The sites I found in those early days were not totally useless—in fact, they were helpful, although a little too positive and Pink. And certainly in the days after treatment, the internet again provided the solace I needed from the Pink. So when anyone says “stay off the internet” as an important piece of advice to the newly diagnosed—I just…NO.
Look, I’m sure there are a few folks who heeded that advice and it worked for them. But I do not think it is a good piece of general advice—it needs to be highly specific to the individual, and maybe most individuals don’t need this little tidbit. Furthermore, I don’t think “the internet” is the real issue. Perhaps the advice should be amended to: be careful of ingesting misinformation. Yes, one is more likely to run into misinformation on the internet, because of the sheer amount of INFORMATION there. But misinformation is insidious, and can be present the old fashioned way, in brochures, and from the mouths and minds of other people (the ones typing the misinformation on the internet).
The internet, specifically social media, can be a wonderful tool, and has been for me (and I barely use it compared to most folks in CancerLand social media). The trick is to find reputable sites, authors, and info, and to always check with one’s own personal medical team. And yes, to even challenge that medical team too.
And sigh, I dip my toe into the celebrity cancer patients issue here. Yes, it was Joan Lunden’s recent tips that pushed me to write this—sort of. As I’m sure most know, stay off the internet was one of ‘em. But here’s the thing: when I read her tips, it was the third time in less than two weeks I’d read “stay off the internet”, which was what really made me say enough is enough already.
Ah, there’s the rub. It amazes me that her tips cause a fuss, when cancer patients giving advice are everywhere. What makes her insights worthy? Because she is a celebrity—especially one of those trusted news-y types that Americans get their info from? Please. Those fake morning and evening tabloid-y shows are worthless when it comes to health info. Her tips, especially the stay off the internet one, are not groundbreaking, original stuff. Yes, I’m a bit biased. I was not a fan before her cancer news. I’m sorry she got it, but it doesn’t make her any more special than the rest of us—and by no means an expert at being a patient.
Look, like most folks, I’m just trying to muddle along, doing the best I can with the cards I was dealt by life. I was not dealt a winning hand, I was dealt cancer. Some things I do OK, others times I’ve fucked up beyond belief. I’m just a human, with all the failings and contradictions that come with being one. I’m gonna continue to seek out those sources I trust, use the advice that works for me, and trust myself to know when to do what I think is best for myself.