To: Cancer, You can kiss my ARSE. All my best, Kaysdaughter

Patient Advocate

I was just reading the blog of a wonderful writer/designer of knitted items. I’ve been reading it for awhile and there’s something about Annie that resonates in me.

Her husband has just been diagnosed with Multiple Myeloma, and she’s been trying to come to terms with all the changes in their life (they just moved too). I think one of the things I’ve most liked about her is that her mind seems to go a mile a minute like mine, and she jumps right in to try things she’s never done before, like house repairs. And like patient advocacy.

She realized immediately that chronically ill people need a strong advocate, and hopefully she will realize as well that she can’t and shouldn’t always be there, and cuts herself some slack. An advocates job is a long and hard one and she will need support just as much as her loved one.

No matter how wonderful your doctor or the hospital is, Everyone needs an advocate. In a perfect world the patient is always informed and things just flow thru the system, but this is not a perfect world. There will be delays, confusion, and sometimes tests you had no idea were happening. Maybe the doctor thought about it while he was charting, meant to come back to talk about it, but had something else come up. Make sure everyone who is involved in your care understands that you want to be actively involved in the care of your loved one.

Make sure the loved one has let the medical team know it is ok to talk with you in regards to care. With the new privacy laws, I know many doctors who will not give a spouse or child any info at all until the patient has stated it is ok. I spent much time visiting patients whose family lived far away, and getting them information was tough, especially if the patient couldn’t verbalize the permission to share information.

An advocate is someone who can say “Wait a minute, why do you want to do this test?” or “Please explain in detail what this procedure is, what you hope to find, and what will be the steps you plan to take when you have the results” (I recommend you split this question up) or “We asked for some pain meds a half hour ago. What is the delay and how can I help to make this happen faster?” or even “I know the doctor visited loved one early this morning but I haven’t talked to the doctor in a couple days and loved one isn’t clear on what’s happening. Please ask the doctor when they will be visiting again so I can be here. If I’m not here, please have the doctor call me at this number.”

If you can’t seem to catch your loved ones doctor when they visit, find out from the nurses when your doctor usually makes rounds and ask them to let you know when they arrive. In the case of my daughter, once alerted by the nurse that the doctor was on the floor, I was known to hang close to the door of the patient the doctor was visiting so that no matter if he had an appointment next, I would be able to at least chat for a second. That was my last resort. I most often went to the nurses station as soon as they arrived so I could catch them before their mind got busy with everything else. Nurses can and will be a wonderful advocate for you, and I often found that one special nurse will really advocate strongly for you. Doesn’t happen every time, but happens often. After many years in the hospital environment I can tell you that its the nurse who really knows what’s going on most of the time.

Most of all, advocates, please realize you should not take the full weight and responsibility of your loved ones care on yourself. Many people will want to help. Let them. Don’t beat yourself up if you are not there when something happens. Both you and loved one need breaks from the insanity.

Cancer is a scary world and its good that you are there for loved one, but be there for yourself as well.

Just gotta talk about it – Some get poor treatment according to study

I’m guessing by now most have seen the news report that one-third of ovarian cancer patients do not get the treatment/referrals that are offered to the rest of the patients. The study, which looked at over 10,000 patients, stated that women over 70, black, hispanic, or poor are not referred for more expensive treatments or even surgery that may extend their life.

I’ve got to say that I’m not surprised. My mother was in her fifties when the cancer recurred. We were lucky and she happened to be seen at the University of Tennessee when she had the crisis that led to the discovery of the cancers return. The physician there felt he could extend her life by at least two years if he did surgery immediately. She was ready and waiting for the surgery. Each morning prepared to go to surgery. Her insurance (my parents were retired military) felt surgery was not necessary. The physician who the insurance had review her files told the UT doctor that she was at her 5 year point for the return, and really she had a good run and had a good life. They would cover another round of chemotherapy.

The UT doctor wanted us to sue.

Mother on the other hand did not want to spend her final months involved in a lawsuit. She did not want us to either, and extracted a promise we would not pursue this legally. She wanted to try the chemo and spend her last months in joy rather than anger.

Its been a few years, and I do understand her wanting to move forward. Problem is I still hate those insurance people and the doctor who decided she had lived a good life when he never even talked to her or to us about it.

If you or your loved one is not given every opportunity at the best treatment, fight for it. If you don’t want to pursue the refusal legally, and you are at one with that, then choose that path. Don’t let your ability to pay for the treatment, or your insurance company decide. You deserve to have the best treatment.

Ovarian Cancer

I am the daughter of Kay, a fierce fighter of Ovarian Cancer. She was in remission from her cancer for five wonderful years before it resurfaced and a few short months later she was gone.

This blog is dedicated to my mom. In the years after my moms passing, I’ve been working in the healthcare environment in marketing, public relations, and patient relations. One of my children has struggled with serious chronic illness since birth, and we spent much of her growing years in one hospital or another. The patient relations field was a natural for me because between my child and my mother’s (as well as my dad, who had cardiac problems) medical experiences and care, I understand. I’ve been in that room looking at the doctor who is giving me bad news, okay’ed procedures I really didn’t understand, argued against urgings to perform procedures that were experimental or I felt weren’t in the best interests of my loved one, and researched and requested other options. I’ve watched the world go on as if nothing had happened, while my world crumbled. I empowered myself with as much knowledge as I could find even before the internet days.

I’d like the site to be a resource. Cancer survivors and their loved ones need information, and positive encouragement along with tools for the present and the future. There are always ups and downs and this blog may be no different. I hope that here you will find a positive resource in your journey to healing. Site plans? Links to the newest women’s cancer news I can find, info on self care, supporting the cancer survivor and their loved ones, as well as how to talk to physicians and asking for the info you need to make informed choices. I may do book or product reviews. There will probably be a little random stuff in there somewhere, tools for keeping track of what’s happening, tools for coping, along with some laughter. I have a personal goal to laugh every day, and I may have a chance here or there to share the joy. If there are issue’s you’d like to see or discuss please leave a comment.

A little about Ovarian Cancer:
According to the National Cancer Institute over 22,430 new cases have been diagnosed so far in 2007. This is such a sobering statistic. This means that in the five short months of the year, thousands of mothers, daughters, sisters, grandmothers, wives, aunts, cousins and friends have been diagnosed with Ovarian Cancer. Their whole life has changed in an instant.

The symptoms are so vague. Symptoms list from the National Library of Medicine and the National Institutes of Health’s website MedlinePlus Medical Encyclopedia:

  • Sense of pelvic heaviness
  • Vague lower abdominal discomfort
  • Vaginal bleeding
  • Weight gain or loss
  • Abnormal menstrual cycles
  • Unexplained back pain that worsens over time
  • Increased abdominal growth
  • Non-specific gastrointestinal symptoms:
    • Increased gas
    • Indigestion
    • Lack of appetite
    • Nausea and vomiting
    • Inability to ingest usual volumes of food
    • Bloating

They also state there may be no symptoms until late in the disease, which was the case with my mom.

Both of these sites are a wealth of info that I encourage you to explore. We may take a closer look here in a bit.

As women, we have a tendency to just keep moving forward even if we don’t feel quite right. No matter how young you are, I urge all women to listen to their body for these vague symptoms.

Insist that your physician listen to them too.

This is my very first post on my first blog! I’ve had the blog for about a week, but decided to do my first post on my first child’s birthday. That way I won’t forget his birthday or my blogiversary. I’m a clever one.

Have been working alot this week, so no pictures on this first post. But, thought I would include some things about me, just for fun.

 

  1. I have 5 children and two grandchildren. We lost a daughter to leukemia when she was 10 and miss her every day.
  2. My mother (Kay – which is why my domain name is Kaysdaughter, and I use it in many of the communities I participate in) was one of the most wonderful people who ever lived. She didn’t have a mean bone in her body. A very gentle soul. She passed from Ovarian Cancer several years ago. Ovarian cancer kills so many women because the symptoms are so vague and we have a tendency to ignore them. Well, this is a rant for another post, enough for now. 
  3. My favorite color is red.
  4. I am a freelance writer.
  5. My most irritating trait? I’m always waiting until something is just right before I move forward, i.e. the perfect first blog post. Sheesh…so I chose a day and posted regardless. It’s that internal editor. She always wants to tweak just one more thing.
  6. One of my life goals is to be organized. I think it is one of the things I’m supposed to learn this trip around. Looks like I’ll be learning it the next life as well, ’cause I just ain’t got it. See number 8.
  7. I have lots of things going at the same time. Lots of thoughts, lots of projects, lots of plans and lots of dreams. I am a multi-tasker supreme. I kid you not.

More tomorrow. I hope.

Happy Birthday Trin! I love you.