Wednesday, July 9, 2014

Be Your Own Best Advocate When It Comes To Your Health

In various blog posts I've hit on the fact that we are our own best advocates, in Melaland, when it comes to anything associated with our health. Feel free to do a blog site search. It's time to bring those ideas together under one roof. And while this is written with "melanoma" in mind, because that's what I know, this applies to other cancers and life-threatening diseases as well.

Many of us have wonderful support systems to help advocate for us. But I've also been around long enough to know that many of us do not have good support systems. Whether you do, or don't, have someone who will make those calls, push for what you need, or go to bat for you when you simply cannot pick up the bat for yourself, there are things you need to be prepared to do if, and when, the time comes.

As a dear melahomey says, "No one wants me to live as much as I do!"

That said, and agreed with, remember: this is your life, your battle, and at the end of your days it will be your death whether you die from melanoma or from some other cause. There are things you need to know.

One. You need a melanoma specialist! That is crucial, no matter what your initial stage, as you live with melanoma at your table. While a melanoma diagnosis is no longer an automatic death sentence, many do die from it every year...and, we need to understand that having a melanoma specialist in our corner gives us the very best opportunity of living while we manage this disease. Many will do well with their melanoma and many will manage their disease. Give yourself every fighting chance. Be in the best care possible. I know people who fly across country to see their melanoma specialist. Others go out of state. I travel over two hours, each way, to see mine at Duke (I see a melanoma specialist surgical oncologist, but a mel spec onc has my records, and we've met, in case I ever need her).

Even if you are in the lower stages, I still advise seeing one. Be prepared to have a tough time getting that first appointment, though, if you are of a lower stage. But push. Be that squeaky wheel that gets the grease. Tell them you want your records seen, that you need peace of mind and to know you're doing everything you can do. Then take your records and get that second opinion. Make sure you were staged correctly. I've seen melanoma specialists change the original stage...I've seen it go down and I've seen it go up. Get your records in the hands of the best just in case you ever need him or her. This is Aim at Melanoma's link to melanoma specialists in the USA and Canada. Where you find them you'll also find surgical oncs who are mel specs and you'll find dermatologists who make melanoma and skin cancer the focus of their practice. If you are outside the USA and Canada, go online and find the melanoma organization in your country. They can help you.

Often people don't realize that there are melanoma specialists! They think any ol' oncologist will do. Or they think an oncologist who specializes in another cancer is OK. Well. No. You need a doctor who knows melanoma, who knows what's going on in the field, who can get you into the right trial for need a doc who KNOWS about the current, and best, melanoma trials. I'll be painfully honest. I've lost good melahomies because they refused to see a melanoma specialist. They liked their onc. They trusted their onc. Their onc was a general onc who, even if my melahomies didn't know they needed a specialist, the ONC knew they needed a specialist. And those oncs knew they were not mel specs.

If you have melanoma, see a specialist.

And, even then, know what's going on in the world of melanoma trials yourself. Be able to discuss the possibility of participating in a trial. Know the latest and know the greatest. Yes, your melanoma specialist will know of the top ones, but that doesn't mean he or she will know of ALL the trials that YOU might be interested in. Some people want to get in on the ground floor of brand new trials. Some want to get in more established ones. Some people are willing to travel if they meet the criteria and others aren't. Here's the go-to site for finding a trial.

The medical world isn't the only place you need to be prepared to advocate for yourself in. There's also the insurance world. Some people breeze right on through and everything the doctor orders get approved with no problem whatsoever. All the time. Rarely though will everything be happily approved forever and a day. Even the luckiest melahomey in insurance world, eventually ends up having to push for something. Some people have to push for everything, and I do mean EVERYTHING. It will vary as to insurance plans, Medicare or Medicaid.

If you have to go to bat for yourself, suit up and go. But also know that you've got a team behind you that you can use. Your nurse is a line of defense who can go to bat for you. The hospital will have someone on staff who is used to haggling with insurance companies and they are there for you. Use these valuable resources.

A lot of us have to muster our courage and grow a spine when we get a melanoma diagnosis. Rarely will everything you want or need be handed to you on a silver platter from day one. That's just the way it is. Remember: this isn't their life, their melanoma, their battle, and it won't be their death. It will be yours. Do what you need to do to live your life the absolute best way possible for your particular circumstances and health.

Be your own best advocate. And when you just don't have it in you, have at least one other person in your life that you can trust to advocate for you and see that you get what you need. But it starts with YOU!

You are worth it.

You matter and your life and battle matter.

If you are a person of faith, pray. Stay connected to God and listen to His leading. Not everyone on this road is a person of faith, but everyone has value, worth, meaning, and purpose. So...

be prepared, and understand what you are willing to do and what you are not willing to do as you face this disease. And don't settle for less.

We don't get do-overs.



Thank you.