Sensitivity and Expertise

A few days ago, I blogged about the apology from an oncology nurse after she was diagnosed with cancer herself. I do feel strongly about this issue. This morning I received a comment from someone (anonymously) on this post:

"I totally disagree with the premise that people must actually have a disease to understand or help those with the disease. Sensitivity is a wonderful characteristic and we hope that our care givers have it. But expertise, with or without sensitivity, is invaluable,and may spell the difference between survival or not."

I disagree with this statement and wanted to clarify my position on this point. 

There is nothing wrong with sensitivity or expertise. We hope that our medical professionals have these qualifications. But the point of my statements is that what medical professionals, who do not have personal experience with the ailment they are treating, lack is the understanding of what a patient is going through. 

What is the patient going through when someone says 'you have___' (fill in the blank with the nastiest ailment you can think of). Their life probably just completely turned upside down. They have no idea of what treatment protocol they are facing. They are concerned about their finances. They are concerned if they will still be able to work. They are concerned if they are going to live.

Then they are here are some tests you need. And you get to wait for the results. How long? 'Oh, a few days maybe. We'll call you as soon they come in.' (Unless of course we forget to call you and you have to wait a bit longer.) Will we call you before the weekend so you aren't stuck in limbo for two more days? No promises there.

And that test we sent you to? Oh, it won't hurt. You will only feel a pinch (that is what they told us to say but we aren't really sure because we haven't had this on ourselves). 

Side effects? Here's the list of what we are allowed to say. 'Some patients feel nauseous. If it lasts longer than 48 hours or you really can't keep anything down, call us for more meds.' (Unless its the weekend or after 5pm....)

Thank you for your sensitivity and expertise but sometimes its not enough.

Finding People Like You

What is the point of a support group? Finding people like you to talk about your issues - whether its widows, cancer people, parents of autistic children. Sometimes it helps to talk to people with similar issues - everyone has cancer for example. But sometimes you need to find people with the same cancer as you.Its pretty easy to find women with breast cancer because there are support groups for them everywhere. Its other types of cancer that can be hard to find.

But then there comes the question: How do you find people like you? There aren't little registries for people with a specific kind of cancer to sign up. So how do you find them? Asking other people who you meet.

I don't mean go up to strangers and ask them if they have a type of cancer. I do mean ask your oncologist about support activities such as support groups where you might meet other people with your type of cancer. Another place you might look for similar people are on social media - just like
networking for a job.

It is so important to find people who are coping with the same issue as you. They are the only one who really understand your questions, who have been faced with the same issues have you,

As I strongly believe that your emotional side is as important as the physical side, finding support is crucial.

The Wrong Doctor

Synopsis of a very sad story: A man with horrible pain issues was cut off of pain meds by his doctor and as a result took his own life.

The details: The man's pain issues were treated by his PCP who was concerned about potential opioid abuse and cut him off of medication. His PCP was concerned about losing his own license as a result of tightening laws regarding opioid medications due to the current abuse epidemic. His pain, when untreated was so bad, caused him to commit suicide.

I think my big problem is that the man was not treated by a specialist who would have a better understanding of options for treating his pain. There is a reason there are specialists. After specializing in their training, they also spend time researching new medications and treatment protocols. Let's see, would you have your primary care doctor take out your gall bladder? Probably not. You see my point.

Personally I want a specialist for pretty much any chronic condition. Something that isn't going away ever requires a specialist.

There is a lesson to be learned here for everyone. If you do not get the treatment you need from one doctor, find a new one. I do not mean doctor shopping to see who is going to give you a prescription for something for you to abuse or distribute.

A doctor should want to work with you and help you with your problems. They should be open to discussion and share decision making. If your doctor cuts you off, find a new one. Don't suffer.

Again, it is such a sad story that this man was in such pain that he took his own life. My sympathies to his family. And to his PCP who cut him off? Thumbs down to you!

A Post for Every Oncology Medical Practitioner

I have often spoke about how nurses, doctors and other medical practitioners just don't ''get it' because they have never been through it themselves. They also don't understand what they do not understand, because they haven't been there.It has been my greatest desire to have medical practitioners who have had the ailment they are treating. Especially oncology medical practitioners.

An oncology nurse recently wrote an apology letter to all her patients. She had not 'gotten it' in all her dealings with patients in her care. Now she knows what she did not get because she has now been diagnosed with a stage III colon cancer. This unfortunate diagnosis now helps her in her dealings with patients. Her letter begins with the paragraphs below. But please go read the entire letter yourself.

"Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.

This thought has been weighing heavy on my heart since my diagnosis. I’ve worked in oncology nearly my entire adult life. I started rooming and scheduling patients, then worked as a nursing assistant through school, and finally as a nurse in both the inpatient and outpatient settings. I prided myself in connecting with my patients and helping them manage their cancer and everything that comes with it. I really thought I got it- I really thought I knew what it felt like to go through this journey. I didn’t.

I didn’t get what it felt like to actually hear the words. I’ve been in on countless diagnoses conversations and even had to give the news myself on plenty of occasions, but being the person the doctor is talking about is surreal. You were trying to listen to the details and pay attention, but really you just wanted to keep a straight face for as long as it took to maybe ask one appropriate question and get the heck out of there fast. You probably went home and broke down under the weight of what you had just been told. You probably sat in silence and disbelief for hours until you had to go pretend everything was fine at work or wherever because you didn’t have any details yet and wanted to keep it private still. You probably didn’t even know where to start and your mind went straight to very dark places. That day was the worst. I’m sorry. I didn’t get it."

Once you read the letter, please share it with your medical professionals. We can help educate our medical providers and perhaps this would help them understand our side.

That Sleep Crap

So I haven't slept well in years. Back in the 1990s and earlier, I started having sleep problems. I have been known to get up and clean the house in the middle of the night.(Why not. I was awake?) Its not like I wake up dying to pee or need a glass of water. I just wake up and can't sleep.

My husband tells me to relax and feel each body part slowly relaxing and then just close your eyes and fall asleep. I have tried everything you can think of, including and not limited to: exercise, sleeping pills, new bed, etc. I have even counted sheep.

Two years ago my doctor sent me for a sleep study that came back as no apnea or anything. This year she sent me for another one because of my fatigue issues. That one came back with apnea so I was sent for a CPAP study and I just got the results: It was only partially successful. This means I don't necessarily get a CPAP and I get a new doctor. I am being referred to a sleep disorders doctor.

Just what I need, another doctor. I can't wait. But if they can help me get a good night's sleep regularly I'm happy.

Cancer Prevention (Or Why Me?)

I have a feeling I am bit cynical these days. This morning I found a post by Dana Farber's Insight blog on cancer prevention tips, which caught my cynical eye.

I was 19 when I was first diagnosed with cancer. Okay, I admit to smoking some by then but I wasn't much of a drinker until I got to college (!!). I was pretty active. I was young. Any bad habits didn't have much time to turn into a cancer, or so I think. 

Then by my second diagnosis, 26 years later, I might have had a few more bad habits but I was pretty active and got check ups, wore sun screen and in good shape. 

This is my family history of cancer: one grandfather got prostate cancer, the other one got gall bladder cancer, and one of my mother's cousins had breast cancer in the 1970s and is fine. (Considering my mother had forty something cousins, that's not a bad record.) 

So what happened? Why me? Why was I the one to be diagnosed with cancer? Twice? 

As for all my other ailments, my mother has had a bad back for years and also has rheumatoid arthritis. No one else has anything like I have. My father, in his late 80's, has been known to call me and ask questions about upcoming medical procedures because I have had way more than him. I ask again, why me? I am a bit cranky about this. Still. I mean why did I end up with this medical history? 

Do you see what I am saying? How did I end up with my medical history when I am surrounded by a family of healthy people? 

Its very frustrating when you follow the rules and still end up with all the medical crap. And I really don't understand what I can do to prevent more cancer - once you have a cancer diagnosis, your risk for future cancers greatly increases. Grrr.

Risk Vs. Worry

You get cancer, get treated, and they say 'here, go on with your life'. (That last part is so helpful! NOT.) Somewhere in the middle of all that treatment crap, they give you all the numbers about statistics - which,as the patient, we interpret wrong. If they say you have a 99% chance of living five years, all us patients put ourselves into the 1% who are not going to make it. (And we ignore the fact that the entire 99% could be hit by a bus at any time.)

Over at 'The Big C and Me', I read today's post by Renn about 'Five Years and Counting' and she included the American Cancer Society's statistic about survival rates for stage II breast cancer. Then I read this post about cancer people mis-interpreting risk and worrying too much - When Does Worry Outweigh Risk. The article starts with:

"For patients with breast cancer — even after treatment — worries about risk are common. Patients wonder, could the cancer come back? Will it spread throughout the body?"

Obviously whoever wrote this has never had breast cancer. Of course we worry, its cancer. Anyway, some research was done and they found after talking to 1000 women with breast cancer diagnoses behind them and found:

"They found 36 percent of the DCIS patients and 25 percent of the low-risk patients substantially overestimated their risk of distant recurrence.

Women who overestimated their risk were three times more likely to report worry about recurrence. They had higher distress scores and lower mental health."

This surprises them? Anyway, go read the whole thing here. They go on to talk about how patients need to understand the differences in risk - when is it low and when it is higher and the difference between local (won't kill you) and distant (the bad kind) recurrences. How patients need to talk to  their doctors more about this and learn about all this so they don't end up with 'higher distress and lower mental health'. 

(These people clearly do not have breast cancer. They don't understand us.) We had cancer and we are going to worry. We just need to learn to manage the risk 

I have had cancer twice now and I do worry about the risk. I had cancer once and my worst fears came to pass when I got it again. So now I am not supposed to worry about getting it again? How's that going to happen?

I'm going to work on worrying that risk thing again still so I don't have 'higher distress scores and lower mental health'. I have a therapist and one of my supposed diagnoses is 'post cancer depression'. When I get past the depression for the first cancer, I'll work on the depression for the second cancer. But I will work on it.