Knowing when to shut up

I talk to lots of ladies who are at various stages in their breast cancer journeys.   I make no secret of the fact that my mission in life now is educating anyone who will listen to me on breast cancer diagnosis, treatment, and recovery.  I have learned so much through my journey, how to navigate, how to research, and how many tips, tricks, and hacks are out there.  I want to make this process more manageable for those who come after me.  Sharing is the easiest thing in the world for me.

 

The area where I struggle is when to shut up.

 

Most of the time I think the advice or information is welcome.  Sometimes it is just lending an ear to someone who has questions, and needs to talk it out.  I could do that all day long (and I sometimes do).  But there are times when I really have to hold back.  When I know my advice or tough love will make things worse.

 

Such as:

 

My biopsy was so painful, nothing can be this bad – I hate to break it to you, but that was the easy part.  The good news is that you will get so used to needles, you’ll practically want to start sticking yourself to save time in the doctor’s office.

 

I just had my first chemo, and I feel great! – So, yeah.  I personally didn’t have this experience (I was horrendously sick from my first infusion), but I know others who have.  The effects of chemo are cumulative.  Meaning that each infusion will hit you a little (or a lot) harder than the one before.  Just because you are still going to your spinning class after your first treatment, does not mean you will still be that energetic after the tenth.  And please don’t judge those of us who had a harder time.  You may be one of us in another month.

 

I can’t wait until I’m done with treatment so I can have my life back – This is the cruelest lesson of cancer, which is why I try not to spoil the delusion.  You need that dream to get you through the day sometimes.  But the truth is you don’t really get your life back.  You may go back to work, and get more involved with housekeeping or your kids again.  But it will hurt.  You will be tired, a tired I can’t describe and that I never believe existed in nature.  You will still have constant doctor’s appointments, physical therapy, and tests.  You may be seeing a therapist to make sense of it all, and to combat the anxiety and PTSD.  You will have to make a spreadsheet of all your medications.  Your side effects will have side effects.  You will realize that the life you fought so hard to get back is gone.  But you know what?  You will have a new life, fresh perspectives, and maybe even a new mission.  All you have to do is embrace it.

 

These are things I would like to say, but I don’t.  Because you have to learn these things on your own, and sometimes you just need to believe that your experience will be different.   Sometimes the best way to help is to get out of the way.

 

Or just shut up.

 

Speaking of new missions, keep an eye out for our website, coming out later this week!

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Practicing medicine

I am here today to talk about being a proactive patient.

 

I don’t care if you have stage 4 cancer, are perfectly (disgustingly) healthy, or act as a caregiver to someone who is ill.

 

This one is for you.

 

(Ok, I do care, and wish we were all disgustingly healthy.  But you know what I mean).

 

This is the deal.  The days where we went to one doctor and took what he (and I do mean “HE”) said at face value are over.  Done.  Kaput.   This is your health we are talking about, the very essence of your life.  We need to build relationships with good doctors, and demand the best care available.  I don’t care how little money you have, or what insurance you are stuck with, we pay for a service, and we deserve the best results possible.

 

It’s your life.  YOU are responsible for overseeing it.  That can’t be delegated.

 

So how do you become proactive?  It starts with your choice of doctor.  If you are insanely healthy, you may only have one doctor (how quaint).  If you are fighting a disease such as breast cancer, you have an army of medical professionals.  I personally command a medical oncologist, radiation oncologist, cardiologist, plastic surgeon, surgeon, and primary care physician.  I also have a physical therapist and lymphedema therapist on call.  I feel like a general ordering maneuvers most of the time, but its the only way I can feel like I have covered all the bases.

 

What to look for in a doctor, whether it is one or ten?  Here are a few of my thoughts:

 

1.  How accessible is the doctor for questions?  Two of my doctors have cell phones where they can be reached 24/7.  Two more have an on-line messaging service; I always receive prompt responses.  Two others are mainly available by phone, but I find that they respond quickly so that is ok.

 

You should NEVER have to wait weeks until you have an appointment to have questions answered.  You should not put up with unanswered messages.   Part of healing is keeping calm, and that is difficult if you are under constant stress from your medical providers.

 

2.  Demand better.  Don’t look at it as a second opinion.  Treat it as an interview.

 

Go to meet additional doctors, listen to their views on your health, and ask questions to see if this is someone you can work with.  Are they willing to work as a team with your other doctors?  Ask questions about alternative treatments and recent research to see what their reactions are.  Make sure they are a good fit.

 

3.  Make sure your doctors are willing to listen to YOU.

 

You have concerns.  Are they being taken seriously?  I see too many people being diagnosed with advanced cases of their disease because it took too long to diagnose.  It infuriates me when this happens.   There are infinite diagnosis tools out there, but doctors need to listen to us and validate that we know something is wrong.

 

If you are brushed off, see #2.

 

Once you have doctors in place that make you comfortable, it is time to research

 

I don’t mean you should spend all your free time on webmd looking for diseases you might have.  But after discussions with your doctor, go on-line and make sure you understand what you are being told.  And that there isn’t more to the story.  Confirm side effects, and check for drug interactions that may have slipped past your doctor and pharmacist.  There are many reputable sites for medical information.  If it sounds wacky, it probably is.  But make notes and ask additional questions of your doctors.

 

If my doctors aren’t rolling their eyes by the end of my appointments,  I don’t feel like I’m doing my job as an informed patient.   Bonus points if they tell me to stay off the internet.

 

Finally, find a support group, either local or on-line. 

 

These are your people.  They are your tribe.  They have been through what you are facing, and have tips and hacks.  And some may be at your stage of treatment, so you have someone to face it with.

 

Facebook has groups for pretty much every medical condition.  They are an information rich environment to learn from others, and hear about treatments your doctor may not be doing.

 

Just a few safety pointers, though.

 

Do you feel comfortable sharing in the group?  Are other members respectful to each other, and do admins enforce group rules?  Is there any vetting of new members?   Are admins or other members actively trying to market products or services to you (a sign that the group is not about support)?

 

Remember that anything you share on-line is immediately out of your hands, so you want to ensure that you have a safe environment.  It should be a place you feel at home.  If not, you may want to keep looking.

 

And that is my primer on the first steps to becoming an informed health care consumer.   There is too much technology at our disposal to not be an active participant in our treatment.

 

And remember, the key word is “eyerolls”.   That means you are doing this right.