Shocked

It’s fair to say that not much of anything shocks me anymore. Maybe life, and this piece of shit brain tumor, have jaded me a bit as I’ve adjusted to a life full of insane (now normal) things and events.

Don’t get me wrong, plenty in life is surprising and downright disappointing; such as toothpaste in the soap dispensers, a bathroom flood, Elmer’s glue all over the kitchen and dog, etc… but nowadays I rarely categorize much of anything as shocking anymore.

I don’t often think about the year (year from hell) I spent trying to convince my first surgeon to operate to remove my tumor. It’s sort of like a bad soap opera where none of the characters speak the same language. I’ve recognized and accepted that we (surgeon #1 and I) believed two different things and neither of us was willing to compromise.

As such, there’s not much to wonder or contemplate about that year.  It was a bad fit and I’m a better, stronger person for moving on. Book closed.

However, I repeatedly find myself increasingly shocked with one thing about how that year ended and the dysfunction of the doctor/patient relationship.

Maybe I shouldn’t be shocked, but I am. It’s the disappointment and shock that gets me mumbling each time I need to get that next MRI on the calendar and since it is nearing the time for my next scan, I’m again finding myself mumbling (among other things)…

You must be shitting me… I can’t believe I still haven’t heard from them!

May of 2008, about a month after an MRI with my first surgeon, I switched my care to Emory and Dr. Costas Hadjipanayis. I had always made it a practice of having my scans put on CD’s to keep for my records. So, when the time came and I left my first surgeons practice, there were no records to forward onto Emory. I simply walked into my first appointment at Emory with my own copies of my scans and the first surgeon and his practice was none the wiser that I’d left.

In the two and a half years since I left the first surgeons practice, I’ve NEVER had a phone call, letter, email or any form of reminder or communication that I am overdue for my MRI (by over two years); that I need to schedule my MRI; or simply to check in to see if I’m even alive.   

Considering the first surgeon, his PA and nurse maintained a standard practice of never returning my calls in a timely manner (often taking up to two weeks to respond) and often taking 7-10 days to get anyone to give me my MRI results, let alone answer any questions about what they were looking at; I really shouldn’t be shocked or surprised at all that I’ve never heard from them.  

But, I am surprised and I continue to be shocked and disappointed. The worst thing and saddest is that I’m sure I’m not the only patient that has experienced this.

I wonder and worry about other patients and their families who are treated like this and assume this is good medical care.

It concerns me that patients often assume that their physician and medical team are acting in their best interest and do not question anything. When in reality, as patients, they may simply be falling through a crack and forgotten.

If they haven’t contacted me, I must not need that MRI…

It concerns me that there are patients out there that need and deserve better, like it did, and don’t recognize they have options. They don’t realize that caring, compassionate and talented medical teams exist if you look for them.

There’s nothing right or acceptable about any of this.

I suppose I should have called a year ago, two years ago and asked the obvious question of why no one ever called me to schedule my MRI. Maybe that was the mature, adult track to take here. I don’t know. What I do know is that no matter what they would have to say, it would never change my impression and experience. It was all so wrong.

I’m a smarter patient for this experience. While it took a great deal of courage to acknowledge and accept that the first medical practice was a disaster waiting to happen; my move to Emory and the outstanding level and standard of care I’ve received should have existed from the beginning of my journey. The experience is a journey and I wish, of course,  I’d never endured that year from hell even though it has brought me to where I am.  

I have very, very few memories after I woke up from surgery in August 2008, but the few I have are vivid ones.

My first memory was that I TOTALLY panicked and had no idea why I had a craniotomy. I suppose it was pretty funny (in a sick way) to watch my panic unfold.

Second, I had an immediate sense of relief hearing my surgeon calmly tell me I did great and that he was really happy we got the tumor out when we did. 

Last and most haunting is the deep dread I felt for what could have been if I’d never left that first surgeons office.

While I remain shocked, disappointed and dismayed, I remain grateful for all that has come from the entire experience.

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6 thoughts on “Shocked

  1. That’s sad that they haven’t tried to contact you. I just had a brain tumor removed in July and knowing me I would forget something like that! I think that most people would. Who carried around an agenda for, say, the next several years? I don’t.

    I’ve blogged about my own experience with brain tumors and doctors. It’s a ride, that’s for sure.

  2. Sad, even most car dealers send a reminder when it’s time to come in for a service visit. Makes you wonder how much really gets overlooked out there.

    One thing Jen has made abundantly clear to others in the last few years is that if you really think something doesn’t “feel right” medically, speak up.

  3. I had a similar experience with my (primary care) physician, who told me the lump in my neck was “nothing to worry about”. A year later I inquired again, and this time was told by the same office “it’s nothing to worry about but to appease you I’ll send you for an ultrasound”. An ultrasound, biopsy, and MRI later, I was then told by my surgeon, that I had a tumor that must come out. My primary care physician never once acknowledged the oversight or followed up with me after my extremely painful and scary surgery. What’s up with that? How can people’s feelings, not to mention lives, be treated so carelessly? It’s infuriating.

  4. Thank you Heidi… the whole experience has been so eye opening, scary and shocking… The concept of “what if” is the most haunting of it all for me.

  5. Jennifer, by writing this so clearly for everyone that reads…and for a portion of those that read/digest and take to heart…you have saved their life or the life of a loved one. Thank you.

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