Learning to Listen

2019 6 17 LIstenFor the past eight years, I’ve watched my best friend fight her body’s rebellion in the form of Ovarian cancer.

She’s had surgeries, blood transfusion, infusion ports, tubes down her nose, and more lab draws than I can count.

Her life revolves around doctor’s appointments, lab results, and treatments as she tries to have some normalcy in the everyday things.

When she first started this journey, I’ll admit, fury wouldn’t begin to accurately describe my feeling toward the situation.

How dare the evil “C” come after my friend so fiercely! (Insert multiple profanities here.)

If cancer had been person, I would probably be in prison right now. 2019 6 17 Most-people-do-not-listen-with-the-intent-to-understand-they-listen-with-the-intent-to-reply1

Seriously.

Not really.

Probably.

I’ve said enough…

Anyhew…she got through her initial “debulking” surgery, which consisted of her getting a large, new belly scar, an infusion port, and a whole lot of new medications.

My anger grew as she told me about her upcoming treatments and how much her life changed, but compared to her ferocity at her diagnosis, mine probably looked like a couple of happy bunnies bouncing through the tall grass. Still, I wanted, needed to do something. Fix the situation. Make it better. Have all the answers.

I needed that, but that’s not what she needed.

When she called to tell me about her latest lab results, chemo treatments, or doctor’s appointments, she explained didn’t want me to fix anything.

She didn’t need me to tell her the latest trend in chemo research or if she’d just take these six things out of her diet or if she’d stand on her head every morning, it would cure her cancer.

She certainly didn’t want any articles about miracle cures or survival statistics.

No, what she needed me to do was listen. Just listen.

Understand, that’s difficult for me to do. Simply sit quietly, take it all in, and not spit out a solution.

I have always loved to help people. Over the years, (hopefully) I’ve given helpful advice and fixed situations that need a hand. I’m quick to address a problem and love the chaos of unpredictability.

That’s why I was a damn good trauma/critical care nurse. Before then, I waited tables and tended bar. All are perfect jobs for someone who’s got a brain thinking at ninety miles per hour 24/7.

Such skills didn’t bode well with two thousand miles between us. I couldn’t help her with the daily things like making meals or cleaning her house or helping her get to and from doctor’s visits and chemo treatments.

That stressed me just as much as her battling this stupid, stupid cancer.

2019 6 17 Never Miss a Good ChanceThen in the middle of all this chaos, something beautiful happened. When I asked her what I could do to help, she said for me to “hang out” with her while she had her treatments. “Be there” when she needed to vent and help her translate some of the medical terminology that didn’t quite make sense.

So, every Thursday, we started texting as soon as her butt touched the treatment chair. She’d call me to and from doctor visits and lab draws.

She’d vent when the chemo caused neuropathy bad enough that she didn’t trust her own feet underneath her.

I’d check on her several times a week, simply ask how her day was going. Not all conversations were about cancer. With over forty years of friendship, we quickly rolled back into talking about any and everything–kids, work, books, movies–whatever came to mind.

With all those conversations, I listened and learned and absorbed everything she told me about what she went through.

The obstacles with insurance. The frustration with remembering things she never had trouble remembering before because of “chemo brain.”

She explained how life at work changed because some of her co-workers wouldn’t look her in the eyes anymore when she lost her hair. (Can you believe that?)

Because of that, when I see someone who appears to be going through cancer treatments, I always make eye contact, smile, and say hello. It’s simple and it can mean the world to someone having a particularly crappy day.

She told me how to better ask questions of those going through difficult times and how to  better help.

She also explained, sometimes it’s perfectly okay to say…nothing.

That’s right. You read that right. To say…nothing. To simply sit and listen.

That doesn’t meant you ditch people. What it means is you keep being present, you keep showing up, and you keep being the same friend you’ve always been.

And it’s perfectly okay to tell someone, “I’m not sure how to help you.” or “Please tell me what I can do for you.” or “This sucks.”

Communication can make an amazing difference in the life of someone going through this crap and to communicate better, simply learn to listen.

2019 6 17 Listening to help

If these symptoms are new to you and persist for more than 2 weeks, please talk to your health care provider about addressing them and parameters for follow up.

If you feel your provider isn’t listening, please get a second opinion.

2016 8 31 Symptoms of OC

 

What they never told me

When I was diagnosed with ovarian cancer, I had the benefit (if you can call it that) of having seen every woman in my family battle breast cancer along with seeing my step-dad battle colon cancer.  Therefore, I was blessed with tons of support from family members who had been through it (some more than one time).  I was given tips and tricks for dealing with chemo, hair loss, foods to eat, etc.  I am also blessed by having the support of friends, co-workers, and my bosses as I near the end of my routine treatments. With any luck, I will stay in remission. However, there are things that I have learned during my journey and I’d like to share some of them in case anyone may benefit from them.

No one ever told me (in no particular order):

  • Some of my friends and family would distance themselves and while others I didn’t expect would be a source of support.
  • How unimportant some things are when my life was on the line.
  •  I would have a ‘front butt’ after tumor debulking surgery and that my belly button would be moved in the process.
  • My incision from the surgery would not heal right away and I would end up with a seroma.
  •  I would find a new use for maxi-pads when my seroma started gushing on a Saturday.
  •  I would teach oncology nurses and a resident how to ‘wick’ a seroma.
  •  Potential side effects of chemo included removing my ‘filter’ when I had something to say.
  • How nice it was to not have hair.  I could not have a ‘bad hair day.’ I went from 20 minute showers – shampoo, conditioner, shave, rinse out the conditioner – to being able to shower in 90 seconds flat.  I had no hair to style, no eyebrows to pluck, and no lashes to put mascara on so I had more time to sleep.
  • I would save money because I was not buying hair products.
  • I would look in the mirror and not recognize myself.
  • How really big my head is.
  • It’s o.k. to sleep at odd hours.
  • I could stay clear of negative people.
  • It’s o.k. to go to the store in my pajamas.
  • I could do things I want to do and not feel guilty.
  • Once I was in remission, people would stop calling me, emailing me, and asking me how I am doing.
  • Being diagnosed with late stage cancer doesn’t mean terminal cancer.
  • Being ‘sick and tired’ takes on a whole new meaning.
  • Losing energy and stamina so quickly when chemo started did not mean that it would come back as quickly.  In fact, it takes a very long time to return.
  • Complete strangers would pray for me.
  • I could sweat so much.
  • My fight against cancer would serve as inspiration to some people to eat healthier and to exercise.
  • I could have pain from numbness.
  • I’d be labeled for the rest of my life. My own PCP has the sphincter police answer his phone and I have to be assertive to get in for a regular visit.
  • About the kindness of strangers, random acts of kindness, & the power of prayer. I can truly feel those around me.
  • If there’s ‘a small chance’ of something unexpected that might happen, it would happen to me.
  • Some people stared & others made no eye contact when I wore a scarf.
  • It’s o.k. to ask for help.
  • I would go to a conference where I knew absolutely no one and leave with many friends.
  • I would go to Capitol Hill to speak with the staff of U.S. Senators and Congress to advocate for research dollars and awareness of ovarian cancer.
  • I would meet Miss U.S.A.
  • I would complete a half marathon exactly one year after my tumor debulking surgery.
  • Being on a dance floor with a boatload of cancer survivors belting out Gloria Gaynor’s “I Will Survive” would be one of my most-treasured memories.
  • There are no more bad days – there are now only good days and great days.  As far as I’m concerned, the only bad day I’ll have is the day the good Lord takes me to His home.
  • My teenage son would not be embarrassed to be around his bald mom and would also wear a teal ‘Fight Like A Girl’ t-shirt to school on my chemo days each week for 18 weeks straight.
  • My retired Navy sweetie would keep his head shaved in support of me, also wear a teal ‘Fight Like A Girl’ t-shirt on my chemo days, and be my biggest advocate.
  • I would start a blog – for myself as a form of therapy – and that it would be read around the world and help people.
  • I hadn’t truly lived until I realized I might not be around to see my son grow up.
  • I’m stronger than I knew.

These are just a few of the many things that I’ve learned.  If you are a survivor, I encourage you to share your thoughts here as well. We all have something to offer to help others who are on this journey with this insidious disease.

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Tips and Tricks to Stay Organized

I have been fortunate to be surrounded by people who have helped me get all my responsibilities in order so that I can concentrate on beating cancer. Here are some of the tips and tricks I have used from items to keep handy to ways to utilize all those offers of help that one receives when diagnosed with a serious illness. These can also be useful to someone who is wanting to help a loved one and may need some guidance on what might be needed:

* Medicines – I need to take several different medicines. Some I take once each day, some I take more than once a day, and some are less frequent. I bought one of these from WalMart to help me keep track:

Medicine Organizer

* Calendars – I have a calendar for my appointments and one for my medicine schedule. I keep them on my bathroom mirror and check them off each day:

Calendars

* “Chemo” bag – When I go for chemo, it is important that I have my medicines, my blood pressure cuff (who knew that you now get charged $85 each time you don’t bring your own?!), chemo treatment info, planner (a gift from some friends to keep track of everything), a Velcro seatbelt cover to cushion the port site on the ride home, water, snacks, wet naps, and a book. This bag is kept packed and ready to go at all times.

Chemo bag and its contents

Packed Chemo Bag

* An overnight bag with a change of clothes and toiletries. I keep this in the car in case I am not able to make it home after a doctor’s visit or a chemo treatment.

* In addition, it is very important to have any legal stuff in order including medical directives, durable Power of Attorney (if applicable), and an updated will. The cost for all of these is not great so please don’t hesitate to take care of these needs. You can also seek out an attorney in your local community or religious organization to see what can be done at a reduced cost. Having the piece of mind that your wishes are written down greatly reduces stress.

* Car pooling – I have people who have offered to drive me to treatments as well as help transport my kid to/from school and school activities. Take people up on their offers to help. Set them up on a schedule if needed and rotate through them.

* Cleaning – I now have a person come to clean my house on a regular basis. If you have offers of “please call me if I can do anything,” put these offers to good use and set them up on a rotating schedule and have a different person come each week to help clean and do laundry. That way, no one person has to take on the whole responsibility and it allows your friends and family to really help you. It is not a burden for anyone who has offered assistance to you to come and help you clean, do laundry, or go grocery shopping – don’t be too proud to accept the help when it’s offered.

These are just a few ideas. Please share any that you may have!

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