Thursday, August 25, 2011

"SERIAL CAREGIVER ON THE LOOSE, FILM AT 11...."

When you read the word "serial", do you conjure up a negative response? After all, serial criminals are usually dangerous. Serial liars can be counted on to bend the truth. So, what is a serial caregiver? And are you one?

I came up with the term to describe a lot of caregivers caring for people with manageable diseases like cancer. Unless your loved one is getting progressively worse, his or her cancer is likely to be treated more than once over time. That means that you're likely to resume most, if not all, of your normal activities when your loved one's cancer is under control, and you'll have your life turned upside down during those times when it returns. You'll give care during chemotherapy and take a step back when the nasty side effects fade away. The more often your loved one needs treatment, the more often your life is disrupted. Both you and your loved one will ride this roller coaster together, finding your hopes and dreams tossed over the side of the car as you go flying around the curves that cancer throws at you.

In some ways, being a serial caregiver is harder than being any other kind of caregiver, because it's often a shock to find that the cancer has reoccurred or popped up in a new location in your loved one's body. You have to stop what you're doing in your own life and become a family caregiver again. Not only do you have to deal with your loved one's disappointment, you have to deal with your own.

Serial caregivers have to deal with more than just physical issues, because with every new discovery of cancer in loved ones, there is the attached terror. Is the cancer spreading? Can it be controlled? Managed? Stopped? Cured?

It's important for cancer caregivers to understand serial caregiving. The better you appreciate the issues you are likely to face, the better you will be able to meet your loved one's ever-changing needs for care. Cancer disrupts life. Minimize the trauma by being prepared.

If you would like more information on issues that often arise in cancer caregiving, check out The Practical Caregiver Guides:

www.practicalcaregiverguides.com

Tuesday, August 9, 2011

WRITING A CANCER BLOG IS A HUMBLING EXPERIENCE

A lot of people write blogs these days -- about their favorite food, entertainment, experiences and activities, sports teams, personal philosophy of life -- you name it and people write about it. But for me, it's all about helping caregivers and their families get through what they have to get through, because I've been there and I know how tough it is.

But writing a cancer blog is a humbling experience for me. Why? Because no matter what I write, when I get feedback, I know that I am in the company of amazing people. Little trickles of information come through about what life is like for these people, and that tantalizes me. So many times I am left with more questions to ask.

When I wrote a blog entry to "Donna M Down in Florida", people wanted to know how she's doing. I'm happy to say that I took a quick peek today and she's getting out and about, taking a boat trip and even planning a party. I wish you blue skies, Donna -- nothing but blue skies from now on.

I got a comment from "Nancy" recently. "I took care of my mom who had breast cancer and two years after she died, I was diagnosed myself...." Wow. Nancy, did it help you to handle your own cancer diagnosis to have been there with your mom? Or was it harder, thinking your cancer would follow that same course as your mom's? What worked because of your experience and what didn't? I wanted to know because I am convinced that a big part of cancer management is all about being proactive, but I also know sometimes it doesn't matter what you do -- cancer is cancer. Nancy, if you read this and you feel like sharing, I'd love to have your thoughts on how you decided to handle your cancer, and if you'd like to tell the world, I'll be happy to help you do that.

Another recent commentary was by Crabby Cancer Wife, married to Crabby Cancer Man, now going through his second round. She has her own blog:
http://crabbycancerwife.wordpress.com/

Feisty, funny, irreverent, thought-provoking, and yes -- crabby -- you can see her working her way through the annoyances of being a cancer caregiver and spouse. She's taking her situation and using it to figure out how to keep going. She doesn't hold back her opinions, so don't expect pleasantries and a spoonful of sugar. My mother would have thought she was a spitfire. But you know what? If you're a cancer patient fighting this disease, it can be great to have someone at your side who's loaded for bear. When she takes aim at cancer, watch out!

Along the way, I've met so many people who have touched me with their own personal stories and experiences. Maybe that's why it is so humbling to write about cancer. It touches so many lives. No matter where I go or who I talk to these days, everyone knows someone who's waged the battle. We're all connected. Read the obituary pages and you'll read about people who have lived for more than a decade with cancer. Look at Bernardine Healy, former head of the National Institutes of Health and the Red Cross. This medical expert and educator survived two bouts of brain cancer over more than a decade until her recent death. That's the thing about cancer. It doesn't care who or what you are, whether you're a liberal or a conservative, rich or poor, educated or uneducated, happy in your life or miserable. Doesn't it make you wonder what Dr. Healy's approach was when she first learned she had a brain tumor? How did she decide where to go for treatment, and what options were best for her? Is that how she survived as long as she did?

That's another humbling thing about writing a cancer blog. I care about survival, but I also care about quality of life. How do you get the best treatment without being sidelined by the misery of chemotherapy? Watch how oncologists diagnosed with cancer do things. They're out there, and if we're lucky, they share their experiences. When they say they use palliative care to get through chemo, take note. This is something to put into your cancer arsenal. The better a cancer patient can get through chemo, without being laid low, the better the chances for a little more time. With a little more time, there's a little more hope -- for a cure, for a reprieve, for remission. That means more lives are lived and more things are happening -- more people are creating, producing, making, and managing all kinds of wonderful projects that can make a difference. Will all cancer patients and their caregivers change the world? I doubt it. People are people, after all. Some are born to greatness, some are born to mediocrity, and the rest of us fall somewhere in between. But from pain often comes inspiration to be more, to do more, and to share with the world. That's the thing about cancer patients and their caregivers. We share experiences and form bonds. We build on that to create a global community. Maybe the next comic genius is the man who survives cancer because people reached out to him. Maybe the woman who writes the next great novel does so because she had the right kind of cancer treatment and a whole lot of support to help her through it. Somewhere in the back of most people's minds, we think about making our mark in the world. The thing about cancer is it sometimes forces you out of your complacency to be more than you ever expected to be. You reach deep and you pull out a piece of wisdom you pass on, and in return, you find wisdom handed to you in little increments that help you get through the cancer experience. You learn from the people around you and you do the best you can. It's never easy. Writing a cancer blog is humbling, but that's because cancer is such a tough teacher.