A fine line between educating yourself and making yourself crazy.

When I first found a lump, before I even saw my GP, I became a googling fool.  With each progressive test and referral it became a near obsession.  I’m sure I’m not unique in this. In fact, although I never mentioned my nocturnal forays into the darkest reaches of the internet to my doctors, they all said something to the effect of  “don’t spend all your time on the internet” “try to stick with sites that give accurate information” (I was given a pre approved list at this point) and later on.. “don’t listen to well meaning friends who have been through chemo. Their experience won’t necessarily be your’s” (and hasn’t that been the truth?!). But just like when a woman becomes pregnant for the first time and wants to immerse herself in stories of pregnancy, labor and motherhood.. you can’t always filter the information so all  you hear about  are the great experiences, perfect patient/doctor relationships, spouses and family that support without fail and happy endings.  Even while inwardly cringing and wondering at the motives of a person who will share tales of 36 hour labors, nurse Cratchets that took glee in their misery, babies who cried 24 hours a day for 2 years straight.. you still can’t help listening.  And researching. And comparing.  Since my diagnosis, surgery, chemotherapy, and impending radiation I have clocked plenty of google time. I’m not sure why I continue to and what I expect to find today that I didn’t find last Thursday.  

This isn’t new behavior for me.  Even before I had access to the internet.   There was a time that I worked as a medical transcriptionist out of my home. I worked for many different disciplines, including cardiology, family medicine, obstetrics, ENT and later psychology and psychiatry.  When I started out I would recognize myself in the patient’s list of symptoms.  The more unusual and obscure the more likely I was to be experiencing the same thing.  I didn’t bother to see a physician regularly during this time.. I had the power to diagnose myself!  I would type along, anxious to get to the diagnostic part of the report and find out exactly what was wrong with me.  Of course nothing was wrong with me and I knew that, but it was easy at times to “go there”.  Compare yourself to someone else based on a handful of similarities.   If have the same diagnosis and treatment plan as another patient and she terribly sick with the chemo, will I be?  If I’m not does that mean the chemo isn’t working? What if it’s the wrong dose?   If someone with my exact diagnosis who did the same treatment has a recurrence 3 years down the road, is that my future?  Why is my hair coming back while still on chemo while someone else’s has made no appearance 3 months after stopping? I’m sure that means mine is going to fall out again, right?  

It’s honestly crazy making, but on the other hand, comforting in some way or we wouldn’t do it.  Btw.. I stopped trying to diagnose myself about the time I switched from medical to psychiatry.  Now I only diagnose friends and family.

Advertisements

26 comments

  1. Tracey · April 2, 2012

    This is actually why I didn’t tell anyone (well, hardly anyone) about my cancer diagnosis until a year after I had been diagnosed, so I’m nearly done with treatment now. I felt that hearing all the stories was going to be too much for me. But as you say, nothing is ever the same from one patient to the next, including how you handle information.

    Like

    • mainelyhopeful · April 2, 2012

      That had to be hard to keep to yourself. Were people upset that you didn’t tell them?

      Like

  2. Carina · April 2, 2012

    I’ve been diagnosing others since nursing school, and since breast cancer I have been diagnosing myself too. Can’t help it. Of course, I kept my diagnosis of people around me in my head.

    When I was first diagnosed, I had information overload from the books and DVDs I borrowed from the library. I did check the list of approved sites given to me but I searched other sites too online, some the ones for medical professionals. Some made me feel worse, some better. I did learn some things in the end that were not mentioned by my oncologist theme, and when I asked, they discussed it with me and answered my questions.

    Like

  3. It's Just About The Hair! · April 2, 2012

    I didn’t loose my hair, never quite got bald … always had just a bit of fuzz!
    Do you think the Chemo was working?
    Maybe it was too busy killing Cancer Cells to bother with the hair?
    Did I get enough Chemo … maybe not?
    I can certainly relate!
    … My mind can get so busy … especially when enticed by the steroids!
    Where do I leave my 5 cents? 🙂

    But then, Breast Cancer is so complex with is + and – and sub-cancers, the more I know the more I don’t! 🙂

    Like

    • mainelyhopeful · April 2, 2012

      I’ll send you a bill in triplicate 6 months from today after we see what your insurance pays.

      Like

  4. suzeq740 · April 3, 2012

    Well apparently Im a bad nurse LOL. The only thing I googled was the drugs. It took me a while to read other blogs….I didnt want power of suggestion or something I guess. It was my loss, I learn so much from you guys. But I am also a horrible pt. I never got my ultrasound on my leg.. it was going down, no pain, so I knew it was okay ( self diagnosing). One of the dangers of nursing school, they warn us, is that we will see ourselves in every symptom. I did that too. I just never guessed one of them would be breast cancer. Course I went to school when christ was a baby.. not sure we even talked about it. You aint crazy, your just a woman.. its our perrogative to do whatever the hell we want to while going through this 🙂

    Like

    • mainelyhopeful · April 3, 2012

      If I were a nurse working through chemo treatments I would probably end up telling my whinier patients to suck it up. 😉

      Like

      • suzeq740 · April 5, 2012

        Haaaaaaaaaaaaaaaa dont think I havent thought about it. Luckily my pt care is limited as I dont have pt load, just the whole hospital. I just go around and help put out fires. But Im filing that one away just in case I need it 🙂

        Like

  5. bgillen · April 4, 2012

    The first run through, I listened and stayed away from the internet. I was already terrified and didn’t want to compound the issues. After being a NERD for four years, It came back and I became an internet junkie about it.

    I wish I’d have left it alone. The more you know, the more scared you get.

    Like

    • mainelyhopeful · April 4, 2012

      Especially when you read conflicting information from what look like reliable sources.

      Like

      • bgillen · April 4, 2012

        Exactly, like there is a “reliable source” for what we are individually experiencing. I find it easier to just listen to my doctors, rely on my instincts and eat what I want. 😉

        Like

  6. The martini effect · April 4, 2012

    You are spot on when you say it’s a fine line. The internet is a mixed blessing, definitely. I found it helpful reading other people’s blogs though as it is reassuring to know you’re not alone.

    Like

    • mainelyhopeful · April 4, 2012

      I feel the same about the blogs I follow. I check in several times a day even when I have nothing to post myself.

      Like

  7. vickylyn28 · April 4, 2012

    Don’t drive yourself crazy with reading everything. One of the many things that I took away from my treatment was that everyone’s body responds differently. There are so many types of cancer and everyone has different body chemistry’s so there’s no telling what or why something will work with one person that won’t work on the next.

    I hope all is going well for you. Stay positive and kick caner’s butt!!!

    Like

  8. kissmeteet · April 4, 2012

    Yep, I have also signed on to “Dr Google’s” practice. I spent so much time reading up on Breast Cancer, some scarey ass sites and info out there so I decided to withdraw from searching, much of the info is out of date anyway and much progress has been made……but not enough.

    I find it very helpful reading other womens experiences and likewise sharing mine with other women…..we are not alone.

    Keep fighting the good fight.

    Like

  9. Misifusa · April 5, 2012

    I did this as well…couldn’t help it! One day it’ll be easier for you. xo

    Like

  10. susymac · April 10, 2012

    I’m a nurse who went through the whole shebang last year…i just wanted enough information to get by and was so fed up with questions from people, i started blogging my diagnosis and experiences instead of repeating myself like a broken record. I didn’t google and didn’t read…just went with the flow, taking my chemo and radiation like a trooper. It’s behind me now and i’m trying to pick up the pieces of who i was. Breast cancer changes you…lots to the good (i lost over 100 much needed to lose pounds in the process) but also sweeps your feet out from under you…i wish you lots of strength!

    Like

    • mainelyhopeful · April 10, 2012

      Thank you Susy. I just found your blog this morning. It’s interesting to read about what comes after. I wish you the same 🙂

      Like

  11. gozzygirl · April 13, 2012

    Your post made me smile today since I’m a googling fool on lots of things. But I don’t take everything at face value. What I did find helpful was http://www.breastcancer.org. They had discussion forums that would help me frame a question so that my oncologist would understand. Sometimes when you’ve never experienced a side effect before, like the neuropathy during chemo, how would you even know to say to your oncologist that you have neuropathy. I couldn’t even pronounce it properly when I first read about it.

    Google is okay if you’re curious, just don’t let it totally freak you out. Hope everything works out with your radiation.

    Like

  12. kissmeteet · April 18, 2012

    lol – I have Dr Google on my payroll too. Seems he gets around!

    Like

  13. Laura Renegar · May 14, 2012

    Somehow I missed this post…and I LOVE it – you are hilarious ! 🙂

    Like

  14. Shaunna · August 4, 2012

    I was hooked to the internet when I first found out I had breast cancer (3 year survivor). It was very hard for me to sleep during the initial diagnosis, surgery and then chemo so I stalked all of the internet forums. My favorite was http://www.breastcancer.org also. In fact it is still bookmarked, as you never get over the doubt that the cancer will creep back into our lives. I remember meeting my Oncologist for the first time, the questions I was asking must have raised his eyebrows, as he told me to stay off the internet….it would only scare me unnecessarily. I should have told him what I was screaming in my head….”Hello, how do you think I was comfortable having you as one of my Doctor’s…I googled the hell out of you”.!! Will continue to keep track of you….stay strong Warrior Woman!

    Like

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s