Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Thursday, November 20, 2008

How To Reach Your Provider

Being a patient for so long, I may have forgotten some of the basics difficulties we face in locating care.
After three years, I still question when I should call my doctor. I think “Is my question stupid? Do I sound like an idiot? Am I wasting their time?”
I don’t know what I’m scared of. I don’t think I’ll be hollered at for being an idiot and sent to the back of the short bus.
I stomp on these thoughts. I beat them out of my head.
I flip the script and think “Without our illness, these people would be out of a job. They are paid to talk to me, if only to alleviate my fears.” Try to remember this, or anything that makes it easier, if you find yourself in the same position.
I am looking out for me. If I am scared in anyway, I’m going to make the call and not give a damn what anybody thinks.
You should all do the same. BE STRONG and TRUST YOUR GUT. There’s a whole, very persuasive book, proving first instincts are usually right. It’s called BLINK, by Malcolm Gladwell, one of my favorite authors.
We’re going to go back to the basics today.
I’m going to answer: How do you get a hold of your provider?
All patients are given guidelines for when to call: fevers above 100.5, diarrhea, vomiting, rashes, etc.
These symptoms are concrete, but sometimes my symptoms don’t fit the “call” problems.
Sometimes, I just “don’t feel right.” My gut says “something is wrong and about to go very badly.”
YES, call your provider with bad feelings. They will not laugh at you. You know your body best.
Know the process of getting a hold of them in advance! This will make it easier when you are sick and not thinking clearly. Write the process down and post it on diagnosis!!
At DF, the most effective way is to reach a provider is to have them paged. I have the page number memorized (617-632-3352). This is the only number I have to know.
I tell operators both my doctor and practitioner. They can work it out who calls you back. Now, you’re on both their radar. Two minds are better than one.
To speak with them immediately, ask to hold and be patched through. If your call is not returned in twenty minutes, call again.
At DHMC, the most effective way to reach a provider is through their secretaries. If you can only remember one number, call the general number (603-650-5000), then ask the operator for the office of X.
Secretaries are an often overlooked Godsend. DO NOT DISRESPECT THEM. Be nice. They’re the glue holding the office together.
My phone calls go like this, “Hi. This is Hillary St.Pierre. I am a patient of Dr. X/Pr. Y. I’d like to (speak with them or schedule an appointment). I just received (insert procedure, surgery, chemotherapy) on (Date) or (how long ago it was). “
“I’m feeling (fill in the blank) and would really like to (…be seen, speak with them, etc.)”
If you are asked “Can you hold?” and feel you are too sick to do this, and need immediate attention, SAY NO. That’s why they’re asking the question.
It is beneficial for everybody if you call knowing your symptoms and what you want. All that will then be needed is a yes or no and some action.
REMEMBER, your providers can’t see you! They are not up in your body with you! Describe the best you can what you’re feeling, but if you’re uncomfortable with their response, ask for an appointment.
It is ALWAYS better to err on the side of caution. Too many things could go wrong.
On somedays, if I’m concerned about hearing a response, I’ll try to get ahold of everybody.
Yes, I call, page, fax, or email all six providers who currently work my case: Dr. Alyea and Melissa, Dr. Gautier and Anna, Dr. Meehan and Beth.
I’m concerned I’m in provider limbo and don’t want to fall through the cracks. By doing this, I ensure at least ONE opinion, and all involved in my case are updated on my concerns.
This has been effective for me. My complaints are legitimate.
If you’re frustrated with a lack of response and start calling so much you think you are being shameless, you’re headed in the right direction. I get into PUSHY mode without being BITCHY. Don’t cross the line.
If I’m concerned I’m not getting the care I need, I’ll start to pout or cry. I never yell or scream.
In my experiences, providers are GREAT at returning calls, pages, emails, etc. This information is for JUST IN CASE.
It’s always best to have a plan B-Z.

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