Saturday, June 16, 2012

An Effort to Help the Medical Community and Others Understand Us on Melanoma Road

It has been brought to my attention that we have a rather "specialized" vocabulary. We really do have a couple of cool words that fit into our world quite nicely and need to be known so they can be used appropriately. Likewise, there are also words, phrases, and attitudes that really need a quick demise.

Our really cool words:
Attirude. noun. A "don't mess with me" attitude that can come on suddenly, from out of nowhere. It can also stay around a while once it starts. Depending on the person, it can start a week or two before an appointment. Of any kind. It can start when we get thinking about our melanoma. It can just start without any apparent underlying reason or source. Melanoma is reason enough for a good case of attirude to start. When "attirude" hits, you know it. So does everybody else. It is what it is. (And, yes, that is how to spell it. No typo!)

Scanxiety. noun. A sense of dread that comes on the closer we get to scans. Scanxiety continues until results are in. Scanxiety looks similar to attirude, but it has a definite onset...scans and all things scans. Attirude is more of a general emotion that comes with the melanoma diagnosis.

I suppose of we can have "scanxiety" we can also be "scanxious". Cool! New word!

Words, Phrases, and Attitudes to Strike or, at least, redefine:
Doom and gloom. The medical establishment is often really good at projecting this undesirable attitude when discussing our melanoma with us. Other people can project it as well. This is more of an attitude and, frankly, we don't need it. We aren't stupid, but we aren't ready to die either, so spare us this idea that we're as good as dead. Give it to us straight but give us hope. Oh, and learn what's happening on the melanoma scene! We've had some extremely promising breakthroughs recently, and while they aren't cures, they do add splashes of bright colors to an otherwise darkish canvas. Get some newer statistics that reflect that people are living longer. Not everyone to be sure and sadly so. But advances in testing, procedures, surgeries, treatments, and knowledge about melanoma in general are prolonging lifespans, and not just with quantity of time, but high quality as well. People fighting this brutal disease don't need other people projecting doom and gloom, so cut it out.

Statistics. Our world abounds in statistics and we're all given an earful of them when we are diagnosed and as we progress along the staging ladder or outlive a stat. Statistics are presented to us as numbers, but these particular numbers represent real, live, breathing people. Us. Talk to us in terms of "people" not numbers. And give us "reverse statistics" please. When I was diagnosed stage 3b in July 2008, I was told it would "probably" spread to either my brain or lungs within ten years. OK, good to know. And it was "probably," not "definitely." A spark of hope there. But, I was also told that 30-35% of people in my predicament die within 5 years. That's how most of us are given our stats. That shook me. But as the dust settled and I got to thinking I realized that meant that 65-70% of people don't die within 5 years! Why couldn't my doctor have given me the reverse statistic?! He never mentioned that other 65-70%, which are a lot of people figures, not numerical figures!

In other words medical establishment and others, give it to us straight. We need honesty; and though we may not like what we hear, in order to fight wisely and well we need it given to us straight. But give it to us in a way that offers hope. Is that too much to ask?

Most in the medical community haven't had the word "melanoma" applied to their own lives and health. They don't know what it's like. Your patients will rise up and call you blessed if you talk to us as if we're living, breathing people who want to stay that way! We aren't numbers and while you think we need the statistics, and we probably do, give them to us in terms of being about people and give them to us in the reverse. Give them to us with hope.

Watch how you otherwise talk to us, also. We understand all surgeries and treatments carry risks and side effects. Please talk with us honestly, yet compassionately. Scaring the beegeezuz out of us and our families helps no one.

Train the people who answer your phones how to talk with us and understand what they are hearing. When we need an appointment, we NEED an appointment! When we say we have melanoma or have a changing mole or place on our body that needs checking, train them as to what that means and not to book us months down the road. Work us in that day or the next, but work us in and soon. And when we have tests, call us with the results asap. A week's wait is ridiculous in today's world. And, please show a little mercy when we call wanting a scan. Nobody wants a scan for the fun of it or for attention. We know the nature of melanoma and want to stay on top of it as best as possible. Help us. Understand and work with us. And when finances and/or insurance are a problem, please work with us anyway and instruct your facility's finance department to work with us and help us there as well. See us as more than a payment plan. See us as people who are in a place you really aren't and don't want to be.

Just tune your heart to us as people, not numbers. And remember what you learned in school and practice about melanoma. Then remember you only really know this in theory. Unless it has been applied to YOU, you really, really don't know what it's like. You may have seen enough to have a pretty good idea, but it's still just that. A pretty good idea.

Hopefully this is helpful.

If so, then I am grateful.