Explore Your Options...

As I approach my last (for now-aka this better be the last one for a while) round of chemotherapy I'm thinking a lot about what my next move is. I got an extra week added on to the end of this chemo because my body has had enough and wants a break. Cancer treatments destroy a person's body all for the end goal of hopefully being "healthy." It seems back-asswards to me from a logical stand point but I'm not sure any of this has been logical at all. Cancer defies logic most of the time; a treatment that works for one doesn't work for another. Even if the numbers are EXACTLY the same, individuality also applies to medicine.

Knowing that cancer can have a mind of it's own is the scariest part of this disease. In the past couple of weeks I've talked to several cancer patients, younger, older, breast cancer and other forms as well. Friends of mine have contacted me and asked me to help other people, even if they don't listen to a word of advice I give them just talking to someone who is experiencing this is BEYOND helpful. I can't put into words what a simple 10 minute conversation with someone who gets it is worth. But the BIGGEST thing that has stuck with me is everyone's fear, not just of their disease but of their doctors. Afraid to ask questions, afraid to ask for second opinions, afraid to ask for tests. This is NOT ok. I'm not sure when the entire western civilization decided that doctors had EVERY single answer about our bodies and we had no answers about them, but they're wrong. I had a woman tell me recently she is SCARED of her oncologist because she doesn't think he likes her. She hasn't had a scan, she has to push for appointments, and has an incredibly aggressive cancer. We shouldn't be afraid of our doctors.When we are sick they shouldn't be dilly dallying and wasting our time. Cancer is a fight against the clock, you have to get the wildfire under control before the whole damn forest burns down. So why do so many oncologists just pretend it's a little campfire that we can toss dirt on to put out? I truly don't know.

I switched hospitals and oncologists because mine would have killed me, not being dramatic being honest. Her exact words were "I'm sorry Jennifer, this is the ONLY thing to do." More of the same hormone therapy that hadn't worked the whole time is what she was offering. My words were something along the lines of "Yeah, no I don't think so. You don't know what you're talking about and I'm going to find a new doctor. Go fuck yourself, thanks for nothing. bye." And I continued to see her occasionally so that I could have two doctors to bounce things off of, everything she has said has been shut down by my oncologist and team at City of Hope. My point here is that you HAVE TO ADVOCATE FOR YOURSELF. No one else will do it.

When I was first diagnosed my mom and sister, Sarah flew to my house and stayed with me through initial appointments, etc. Sarah has been fighting an auto immune disease upwards of 10 years and has been to every type of doctor you can think of. As we were calling hospitals setting up appointments my mom and I were confident I would be taken care of swiftly. Sarah was not. She warned us appointments could take weeks and we didn't believe her. She was of course, correct. I was made to wait for weeks to get to an appointment and then hours to be seen. There can be a whole lot of hoops to jump through to even see your doctor, and they are insanely busy once you get there. I understand that and it's a system that needs to be fixed, I can't do anything about that part of it. What I CAN do is advocate for myself once I'm in that office. I can educate myself, I can see multiple doctors, gather opinions, see alternative medicine doctors, GATHER information and then the MOST important part of this is TRUSTING YOURSELF. Listen these doctors/nurses/oncologists have had LOTS of education on medicine, more than I will ever have. But they won't ever live in my body, so it is ultimately up to me what happens to it. People around me love to ask "Is that what THEY told you to do." The "they" being the myriad of health care providers I see, sometimes yes THEY told me and sometimes no, I told me. I researched, I trusted my gut, and I found the right professionals to help me. I have heard of oncologists refusing to see patients who don't do EXACTLY what they say. I'm sorry what? If I feel like something isn't working correctly and I have certain side effects they aren't allowed to tell me I don't or just to deal with it.

YOUR DOCTOR IS NOT IN CHARGE OF YOUR HEALTHCARE. YOU ARE.

Your doctor should be there to guide you, they should be there to support and suggest, not to control you. You have hired them, they have not hired you. It is their JOB to take care of you, it is not a right they have, it is an opportunity you are giving them to help you. They don't save your life, they help you make the right choices to save your life. CHOICES.

When I was first diagnosed Stage II, I did everything the doctor said. I asked if I should change my diet, he said no. I asked a whole lot of things and he said nothing I do will help and not to worry he would "cure me." God complex much? He didn't cure me, what he did was ignore the metastatic disease in my lungs a month into my chemo treatments. I brought it up once and was blown off about it, it's just a chest infection they said, nothing to be concerned about they said. I listened to them and they were WRONG. Just flat out WRONG. So I did all this radiation and all this treatment for you to be wrong. And I trusted it, I trusted every word he said, and that incredibly smart doctor of mine was wrong. I'm not saying every doctor will be or is wrong. They save lives and most of them work really hard at doing it for all the right reasons.

IF YOU'RE DOCTOR ISN'T MAKING YOU FEEL CARED FOR SWITCH DOCTORS. PERIOD. END OF STORY.

I'm not talking about if your doctor is late for your appointment, don't be high maintenance about timing with your oncologist. You could be the one in the room scared and with a million questions delaying your doctor to getting to their next patient. If they acted impatient with you, you definitely wouldn't feel cared for.

I'm really referring to when a doctor gives you the brush off. If you have questions about your treatment, they are there to answer them. Just because it says M.D. after their name doesn't make them the boss of you. People get absolutely indignant when you talk to them about food, nutrition, holistic choices but those same people do EVERYTHING a doctor tells them. Doctors don't have all the answers, I promise you that. (For example oncologists get about 2 hours of nutritional training, they aren't exactly the end all be all of how to care for your body through food.)

GET A SECOND OPINION, IT COULD SAVE YOUR LIFE.

Like I said, I don't know how to give you medical advice. I have NO CLUE what's right for your body. I could NOT and AM NOT doing so well because I know how to cure my own cancer or anything crazy like that. I DO believe I listened to my gut and my instincts told me run out of that oncologist's office and find a new doctor. I interviewed several and the one I landed on is right FOR ME. Not saying for everyone but for me.

Please listen to your gut. And ADVOCATE for yourself. No one and I mean NO ONE will care as much as you, ever. Do not take a back seat when it comes to your health, especially cancer. Be proactive, educate yourself, ask the uncomfortable questions, cause a stink, make people listen to you.

Your life could hang in the balance.

XOXO,

Jenny

Comments

  1. Excellent advice, Jenny! I would add that a place like The Cancer Support Community-Benjamin Center can really help people connect.

    ReplyDelete

Post a Comment

Popular posts from this blog

The waiting game...

The Perfect Patient

Around and around and around she goes.....