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.
23 thoughts on “(Don’t) Take It From Me…”
Great post! I agree with you 100%, and although my blog is all my “cancer lessons,” it really comes down to one. Cancer, like any illness, is different for everyone. Thus, no one can tell you how to “do cancer.” As for the Internet, I’ve heard of patients’ doctors telling them to avoid it. I think that’s nuts. There are good sites, reputable sites run by organizations as well as the government, which are excellent sources of accurate information. As a librarian, I don’t claim to be an expert on anything, but I do know a little about finding information and so feel qualified to make that statement.
Thanks–so glad you agree! Was nervous about posting this because most blogs I read I gather and follow advice–yours included! And wow, you’re a librarian–that REALLY makes you qualified to point folks in the right direction. I am in no way qualified to do such things, and meant no offense to those folks who can and do provide those needed tips.
I am concerned when doctors suggest staying off the internet, can’t remember for the life of me if any of my onco team were the ones suggesting it to me. However, long before cancer, I left a dermatologist who criticized me and all patients for having “outside” info to question doctors. The kicker? He’d given me the info I was bringing up the previous year. I was dumbfounded. So I got an interesting lesson before becoming a “professional” patient with cancer. Just something to think about.
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No one ever told me to stay off the internet. Thank goodness. Telling someone to stay off the internet is like telling someone she isn’t smart enough to find the reputable sites and such. And like you, I’m just trying to muddle along too. Aren’t we all?
Oh Nancy, you more than muddle–you are my best and favorite resource! And so glad you like this post, like I said to Kym, this was not meant to criticize folks such as yourself who are very good at giving those needed tips. I just…know my limits and abilities. Griping? I excel! Other stuff? well…..
Anyway, thanks for reading as always!
Outstanding post and thank you for sharing! I’ve reached the conclusion that (most) doctors are stupid and want to appear as if they know everything to their patients, hence the stay off the internet nonsense. I cannot tell you how many medical people told me that. It was freaking ridiculous. As someone who was too sick to do anything but lay in bed and breathe and/or throw up constantly for an entire year, rather than telling me to stay off the internet, I should have been given useful sites and resources.
Wow! Yes, you should’ve been given resources! As I mentioned in an answer to Kym, I am concerned about medical folks who urge us to stay off the internet. Very upsetting. Thanks for reading and commenting!
Yep, I sure do love this post!!! I don’t like being told to stay off the internet. My docs didn’t say it that way. They just said to not Google too much & assume any outcome to be eminent. Every case is unique. Therefore, no one can really be an expert at being a bc patient. Everyone’s experience with chemo, rads, etc is unique to them. I did not get all nauseous from TCH, but know of others who were terribly ill from it, just as one example. Like you & others, just muddling through, blogging to share my own experience with it. If it helps somebody, great. It helps ME. I am by no means a role model for how to do bc. Probably the exact opposite, actually! I am so thankful that I did get on the internet & found your blog & others. 🙂
Yes, and I learned that every case is unique…on the internet! Ha ha. I seem to remember it was stressed to me that my case, while not common being HER2+, was being treated in the standard way. In fact, some mistakes the PA made with me were because she assumed I was experiencing some common reactions, and that was NOT the case–a disastrous bout with treatment for shingles, when I in fact had Staph, was because of an unwillingness to accept each case is unique. Ugh, shudder, bad memories!
But I too am thankful that we BOTH got on this interwebz, and found each other! Hugs!!!
It’s the indiscriminate Googling and misinformation my dr is against. He gave me specific sites I was allowed to visit – of course I didn’t listen to him and am a Google fiend. I should not be allowed to roam the Internet unchecked. My mind latches on to all the bad stuff and seems to ignore the good stuff. I think in many cases Drs are trying to save us from ourselves.
Ha ha, indeed, last year while experiencing some very bad anxiety while ill, I Googled when I shouldn’t have–it happens. Like I said in this post–the “no internet” advice works for some, I only object to how much I hear it, and the way so many folks give this tip to all patients in general, as if all cancer patients are the same.
I’m surprised at how many folks commenting here mention that it was their doctor who gave this tip (as I said in another reply, I do not remember who advised me to stay off the internet, it was more than one person, so I only remember the message, not the many messengers). I’m sure at least one of the stay off the internet tips I read recently was in pieces written by medical professionals. But I object to it, no matter the source, ha ha!
Anyway, thanks for reading and commenting!
Great post. I was told only to believe the information on breastcancer.org and the American Cancer Society’s site. But I also found many other good sources for cancer and health related news. My father has been using wikipedia to find out (mis)information on his lymphoma. Both I and his oncologist told him to stop! He’s an educated intelligent man but thinks wikipedia, because it comes out on the top of google searches, will tell him all.
Oh Wikipedia, I so often wanna believe it, but you’re right, too much chance with it. But I’m pleased to hear you were offered a little guidance rather than that “stay off the internet” as a whole. Seems to be contrary to what happens for so many others. Thanks for your kind words!
My impression is that sometimes newly diagnosed folks aren’t familiar with the best sites for reliable info about breast cancer so giving some suggestions about sites to look into can be helpful. Telling people to stay off the internet just seems ridiculous in today’s world and as you said, it’s possible to run into misinformation anywhere.
Yeah, not being familiar about which are the most reliable sites can be said about any illness, or heck, any topic! And yes, suggesting anyone stay off the internet for answers is ridiculous. Thanks for stopping by!
My oncologist calls me an extremely informed patient. Yah, that’s from reading the internet. However, once I’ve read something I take it to him and ask for his opinion. I trust him fully, I am fortunate to have one of the best oncologists in the world, as far as I’m concerned… he says, you bring me information that concerns you, and then I’ll try to give you knowledge about that information. Works for me. I just wish I’d read the internet when I was first diagnosed at stage III, there are many things I’d have done differently, perhaps even helpfully, prior to metastases. I appreciate your balanced thoughts, very much.
Yes there are so many sites I know about now I wish I’d known then.
Thanks I do try to look at each issue from all sides, and TRY to be balanced.
I’ve always lived on the internet. It is unlike me to just sit and take the advice from my Doctors without doing some research. I like to walk into my Doctor’s office with good questions and sometimes they feel challenged and annoyed, because the truth is, I am no MD but I try to get as much information as possible. After all, it is my health we’re talking about here!
I am guilty of saying to some patients to stay off the internet, but like you said, it’s the way the comment is presented. It is indirectly asking the patient not to get educated about his/her health condition. What prompted me to tell people to stay away from the internet was when I read my entire pathology report and researched every word. I read everything related to my report on the internet and that was not very wise. It scared me! Now I have more knowledge about what sources “to trust;” sort of. I tell people to be careful where they get the information from because truth is, there is a lot of scary stuff on the internet and a lot of it isn’t true or it isn’t related to your case. (Yup, I wish I had known that when I was shaking for hours…)
Sorry to reply so late, I’ve been slack lately!
Yeah, sometimes it can be a bad idea–I’ve read my blood reports and looked up stuff and got all out of sorts until I met with my doc. Maybe that is the key–to not say AVOID internet at all costs, but to be careful about it.
The internet was a lifesaver for me when I was newly diagnosed, especially the message boards on breastcancer.org. I think as adults it’s up to each of us to weed out the bad from the good. We all make our choices, but to ignore the internet is to shut out a wealth of information and support.
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Yep! Like I said, it is possible to get questionable info from anywhere–especially people who say silly things to us in real life! But celebs and some advice-pushers stick with “avoid the internet”, no one ever says, “stay away from your crazy Aunt Bessie who is trying to get you to take some crazy treatment”. Dubious stuff is everywhere–stop picking on the internet! Thanks for stopping by!
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