Say What?

 

Have we gotten bolder when it comes to standing up for ourselves or our loved ones? Just because it’s the way of the world now, do we have to speak-up or end-up with tire tracks on our backs?!!  It seems that way.

Reading your comments and seeing all of these insensitive remarks made in a hospital setting, in a cancer world setting is so awful.  I have a few of my own that will never leave me and I’m remembering from Leory’s first surgery.  That’s going back more than nine years now.  The comment a surgeon made to us when she was doing a post-op exam on him.  She looked up and said, “We all have an end date.”

She never put a foot in that hospital room again.  I made sure of that.

Where do these people put their common sense?  Did they have any to begin with?

Every medical team and I mean nurses, doctors, aides, everyone, should gather at the beginning of their shifts and be reminded of where they are working and how fragile the patient is, in each and every room they will enter.  If they are not qualified to give medical advice, or offer up information, then they shouldn’t open their mouths.  And for heavens sake, check the stupid remarks at the door. If they fail to do this, then they get what they deserve.  A stong verbal reminder that they goofed big time!

It can happen once.  We all get a pass, once.  But if it happens twice, shame on us.

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YOU COUNT

No one should ever, and I mean ever, feel like a number, or a medical file, while waiting on care at a cancer center. 

If that has happened to you, don’t stand for it again.  Instead, stand-up, find someone who can direct you to a supervisor and complain.  LOUDLY.

Cancer may be changing your health.  It may be changing the way you look and the way you feel, but it hasn’t taken away who you are.  You are a bright, functioning, person. YOU count, just like anyone else counts in this world.  No one should have the ability to make you feel less than that. 

So, if that happens, get up and get angry.  It’s OK to voice your opinion. 

Cancer centers employ a lot of people.  Some of them, unfortunately, were absent the day they taught manners and how to treat a patient.  So it’s up to you to sometimes do a little teaching on your treatment day. 

Remember, you’re not a number, but you do count!!

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The clock is always ticking in cancer world.

If cancer is a hereditary concern, it’s just a matter of time before the genes do what they’ve been preset to do and the cancer begins to grow.  In some cases of breast cancer, or colon cancer and others, it’s important to start the check-ups early to monitor any early signs of changes.  There are so many tests now that can do that.

And then there’s the more immediate time frame.  Going to the doctor, getting blood tests or scans that will tell the tale of where the cancer is at this moment.  It’s a pins and needles kind of day.  We’ve all sat there waiting to hear what the results will say.  There isn’t a more anxiety filled time than waiting for that exam room door to open, when the doctor walks in to report on the report.  But wait, not everyone gets those results so quickly.  Instead of a few hours, it can be days, even a week or more for that phone to ring with results.  It’s agony.  We all know that in this age of medical machinery, tests are completed and results can be had in hours.  Sure, they need to be read and written-up by an expert, the doctor has to review it too, but as the clocks ticks, the patient can hardly resume a normal routine until the resutls are known.

Time, precious time…give us those results.  We need to know.  

Good news, not so good news, we’re living with cancer, so we’re already prepared for either outcome. It’s just the “time thing,” the waiting, that really makes us crazy.

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We think we have so much time in the beginning and besides, we’re so thrown off course by the diagnosis, saying the right things, and having the tough conversations aren’t even a consideration.

Then there’s the planning of what comes next.  Will there be surgery, will there be chemo therapy, how will that fit into the days that used to be filled with “stuff?” 

And the time slips away.  Before we know it, it’s been weeks, then months, and all of sudden you’re celebrating surviving cancer a year out or more.  Maybe the doctors were wrong, maybe there will be more time than they thought.  And the conversations are put off again because time seems to be on our side.

Try to imagine Cancer in an hour glass.  When the sand starts to slide through the narrow opening, there’s so much of it.  There’s so much time in the top of the glass.  We hardly feel the pressure to talk about lives shared as kids growing up, or as sons and daughters or as soul mates. 

We just do what we have to do to give that life another day.

Until something changes….cancer makes a move and we’re caught off guard.  The clock stops.  The calendar ends.  The life is gone.

Who forgot to turnover the hour glass? We need more time.

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Cancer deals out the good, the bad and the ugly in generous portions.  and it’s important to talk about all three.  The good is easy.  It’s spelled out in three little letters…N-E-D.  There are no better letters in a cancer spelling bee. 

We adjust our lives to deal with  the trauma of the diagnosis, treatment follows, the outcome is a good one and eventually life returns to normal or close to it.

Many cancers can be treated like a chronic disease now, controlled by medicines that knock it out or knock it down.  Cancer survivors, and that’s a term I don’t use very often, call themselves that because they have seen the beast, and lived to tell the tale. 

Some of us have not been so lucky in cancer world.  When it’s been bad, it’s been very, very bad. 

So it comes down to facing the fact that cancer kills. 

How do we handle that?  More importantly, how do we talk about the ultimate outcome?

As a cancer patient cargiver, do we ask the right questions of our loved one suffering with this disease?  I mean do we ask the tough questions, when the cancer has reached a place where death comes knocking? What are their final requests? Do they want us to carry out certain tasks?  Who should be there to say good-bye?  In those last days or hours, how do we make them feel at ease?

This is a life changer, I assure you. It will be one of the hardest things you’ll ever do, but it will also be one of the most important.

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Let’s call this day, OUR day. 

We’re taking control of the day.  We all know how important it is to stay in control while we’re in a cancer fight.  There are so many new voices stepping in, trying to pull us one way and then another, it’s not unusual to feel like you’re spinning out of control.  There are so many decisions to make.  Some doctors try to make the choices for you, while others throw out so many options, you’re blown away by what’s in front of you.  So today, I’m here to remind you to stay in control.

If you don’t know all the answers, ask.  It’s as simple as that. Ask questions and get answers that will help with your decisions.  Making the right choice is especially important in cancer world.  Talk it over with your caregiver.  Sometimes another voice on the subject brings in another point of view that will lead to a better decision about treatment or looking toward the next bend in the road.

But stay in control.  You’ve been there for a long time,and just because cancer is in the room, shouldn’t change that part of you.

When we’re making our own choices, we feel empowered and that gives us strength to fight even harder.

With cancer, you get an extra layer of “tough.”  There’s a reason for that.  We all need the “tough” part to stay in the “control” part.

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I never got either one of their names. But I’ll remember them forever.  You never forget the angels in your life, especially when they visit you in cancer world.

 It was after midnight, Leroy was hanging on to life by a thread.  I’d held on to his hand so tightly as the O-R nurses wheeled him closer to the door that would separate us for many hours…maybe even forever.  The doctor had been very clear that his chances of coming through this spinal surgery were slim.  I didn’t want to let go, but I had to let go, so I kissed him and told him I’d see him when he woke up in recovery.  

 The floor was pretty much deserted  I walked toward the waiting room.  It would be a very long night. 

I never got her name. She just appeared with warmed blankets and pillows.  She told me to get as comfortable as possible and out the door she went.  She was angel  number one, that night.  Some one to take care of me when I really needed it. 

Same night, different nurse, or angel. This one was my life-line to the operating room.  Like clock-work, she would call me every couple of hours to give me an update on how the surgery was progressing.  And when it came time for her shift to end, as the new day dawned, she decided, she couldn’t leave me now…so, she stayed until Leroy was safely on his way to recovery.  We met outside the O-R and she put her arms around me like angels do.

Pierse, our oncology nurse, our angel from the first day at the cancer center until, well, she’s still a part of my life.  Angels don’t come any better equipped than Pierse.  

We meet so many of these angels as we make our way on this cancer journey.

They come in all shapes, sizes and skills.  They wear scrubs, they can hang a bag of chemo, change a dressing, they can find a vein, they know when to smile and they know how to take away the worry.

Angels rule!!

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First things first…Al…you know we are all keeping a good thought in our hearts for you and your wife. It is wonderful news to hear she is improving.  Hour by hour, we can only hope that continues.

Laurie Hirth…where have you been?  What a great surprise to “see” you here.  Isn’t it great that our group continues to grow, but we have our core, those who rooted in this community years ago and stick with us.  I appreciate every single one of you, more than you know.

Actually, Laurie used an interesting phrase in her post…the “friends we never met.” I guess we are that, but we have helped each other through so much cancer chaos over the years, I’ve always felt we really have met, at the toughest turning points in our lives.

It makes me wonder about all the times we’ve passed strangers on the street, in the grocery store, at the gas station, smiled at them, and for that fleeting moment, connected.  Are they struggling in cancer world?  Have they visited our community?  Should they be a “friend we never met?”

We are a powerful group.  Cancer, as horrible as it is, has taught us some great lessons in life.  We’re survivors now.  We’ve learned to navigate a world that puts up terrible obstacles along the way.

We’ve learned patience and we’ve learned how to conserve our energy for the really tough times, and some of us have a masters in caregiving now.  We’ve learned to share too.  Especially here, at “Our Cancer.”

As the saying goes, “we’ve gone to school on cancer.”

And we’re friends forever.

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HOPE

That’s it…it’s all about HOPE!!

That’s what makes this all worthwhile.  It’s HOPE.

We all have to have it, otherwise why bother with the treatment, with the fight, with being a caregiver or a nurse….or with being a patient?

We are in this battle because inside all of us, no matter what hat we’re wearing, is that thing we call HOPE.  Chemo can’t kill it.  There’s not a surgeon alive who can cut it out.  It’s what brings the nurses back into the infusion room day after day and it’s what empowers the caregiver to do what they do…give life to a loved one, a fighting chance. 

It’s the engine that hums along inside the cancer patient that drives them to believe they can live another day, maybe another week, maybe another month.

And if that life ends, hope seems, for a while anyway, to end with it…but that’s the best part about it….it will come back…it will make it all worth while again.

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This is a place where we come to talk about how we cope with cancer.  Some of us are in the middle of the fight and some of us have been through the worst of it and are coping with loss. 

Have you ever wondered how oncology nurses cope with being in the fight every single day? I mean this is a career choice that boggles the mind.

Take the infusion room, where nurses dispense bags upon bags of chemotherapy.  These men and women don’t just hang a bag and move on to the next chair. Nurses know their patients.  Everyone knows everyone. It’s not unusal to be greeted with a hug and a “How are you?”  The conversation could move on to talk about the family, or a favorite sports team.  Where ever it goes, the nurse and the patient, they’ve bonded.  They are on this mission together.  This could go on for years.  These nurses have extended families that number in the hundreds.  The cancer patient and the cancer nurse….this is quite a team.

The same goes for the oncology nurses stationed on the cancer floors of the hospital.  Some patients are there for weeks.  These nurses become the thread that connects patients to their doctors and to the outside world.  Hospitalized patients appreciate a friendly, skilled nurse. 

And what about the nurses?  My bet is they appreciate the same in their patients.  Many good friendships are forged between cancer patient and nurse because this disease does not let go easily. You become a part of each others’ life.  And what happens if the worst happens and the patient dies?

Do nurses have a place to go to get help?  Is there a blog made for them where the sadness can be spelled out to make them feel better?  Do they huddle around each other and “lift” like we do here, when death takes a long time member of that extended family? 

Coping in cancer world is far-reaching.  Maybe next time you see your cancer nurse, YOU be the one to hug first.  YOU be the one to ask,”How are you feeling?”

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