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Life Lessons from a Cancer Fighter!

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

 

check out this post:

http://www.caringbridge.org/visit/joemetzger/journal

 

Life Lesson

After 18 months of fighting cancer & dealing with health care professionals and people each day... The people who treat me like I'm LIVING are so much more fun and so much better to be with than the people who treat me like I'm DYING.

When you talk to me, or to anyone dealing with Cancer... please be positive and ask positive questions. Get rid of the puppy dog eyes and the sympathetic look. 

 
There's such a huge difference in how people approach a sick patient. I love the people who ask what I'm up to, and ask with enthusiasm... rather than the people who act like the world is coming to an end.
 
On Friday, I went in to my radiation treatment in the middle of the afternoon (4th treatment, only 6 to go!)... it's a pretty intimidating experience. on the verge of one of the most depressing things ever. But the two ladies who administer my treatment... they were focused on what I had lined up for the weekend. And, they asked it in such a way that it triggered a positive conversation and they made me feel more relaxed and calm. 
 
it was: "so joe, its good to see you today... what kind of fun things do you have lined up for this beautiful weekend??"
 
Isn't that a lot better than hearing: "So Joe, you've had four rough treatments this week... (with sad puppy dog eyes, and dramatic expression) How are you FEELING?  Would you like to talk  about your feelings and side effects?"
 
It's crazy. It hit me so hard yesterday, that I wanted to run through the halls at the Hickman Cancer Center to tell the 95% of the people who have worked on or with me over the past 18 months how positive they have been... and because of their positive spirit, it helps me stay positive. 
 
the worst thing in the world, is the care giver who is that smothering loving motherly type... I know she means well, but I'm Living here!!!!!

Oh... and this one goes for everyone. If you're talking to me or to a cancer fighter....  if you have a story about your best friends, uncles neighbor, who had cancer 15 years ago... if the story doesn't have a positive ending... save it. 
 
I really don't care and neither does any other cancer patient care to hear about it unless it has a really good ending.  If I would have asked everyone who has made me sit through their story... and I finished with the only question i know to ask... "yeah, how that person doing today?"  and I kid you not... it seems like 80% of the time the answer is "oh, they died, but they outlived what the doctors told them by X years"   My mind goes... You dude, those so much for the positive energy there! (yes, you are sensing some sarcasm there!  LOL)

And... one more life lesson for the week:  When you see my kids, my wife or my friends or family... please ask them about THEM first, not about me.
 
Nothing worse than someone who sees one of my sons, and its the first time they've seen them in a year or so... and the very first question is "how's your dad doing?"
What are they, wood?  
 
Show your care for the people in front of you first.... and if the conversation goes well... and there's positive energy going back and forth... eventually (or most likely) the conversation will lead to that topic) But, its so disappointing to hear that people would rather here the gory details of my cancer or my treatments... instead of having a conversation with them to share a smile, laugh or a hug.
 
Be positive to others, and positive energy will certainly be returned.

Just sayin'!
 
jen2012
Posts: 1196
Joined: Aug 2012

Great post joe! Those puppy dog eyes are uncomfortable...anyone who shows too much sympathy makes me cry and its always awkward.
So my husband had surgery last week...at a teaching hospital. We were in the preop room going over stuff with the anesthesia intern and he saw in the chart that this is my husbands 2nd cancer and he said...oh man sorry you have really bad luck. We kind of looked at each other and rolled our eyes...but im thinking...wow how unprofessional...teach them this stuff in med school!

I think people mean well but just dont know what to say or how to act. Actually im really happy getting an email from a friend just checking in seeing how things are going.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

It never hit me until this week.... but I've been dealing with this for 18 months. The Puppy Dog eyes are the key identifier to how the conversaion is going to go, how its going or how it went.  Us cancer-fighters are mentally dealing with this 24 hours a day, 7 days a week. We can't get away from this. If follows us everywhere.

But, the best things we can do is to help ourselves grow and learn from this... all while batteling and pushing to survivie.

Yes, everyone means well... but they don't know what to say or how to treat us.

After I posted that yesterday, I recieved dozens of notes... and namely an appology note from my sister.

I felt terrible, as I didn't really think of her when I was writing. She is the worry-wart in the family and she has the biggest caring-heatt of anyone you'lll ever meet. We got through it, but i felt terrible that she fielt so bad for how she has and does act.

Another post was this article which I thought I'd share with ya'all.

http://touch.latimes.com/#section/-1/article/p2p-75241622/

so much good info out there, we just need to seek it out and share with others.

Hugs!

Joe

 

 

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

yes, you are correct... they don't teach "personal communiation skills in Medical School"

i think the "how to win friends and influence people" class should be taught at all levels.

the basic class on life needs to be taught.

 

but, then again.... Life is why we learn, and why the older we get... the better we get!

it's all about life experiences, and always wanting to learn, improve and grow.

 

at my hospital... there are only about 2-3% who don't "get it". But those 2-3% of people, can ruin a cancer fighters day with one stuipid comments, one puppy dog eyed look... or with selfishness or ungratefullness.

I'd like to hold a class for the medical caregivers to help them to help others!

I gotta start that book!!!!

jen2012
Posts: 1196
Joined: Aug 2012

You are right Joe!   These things are learned  - some people never quite learn them though.  Like my 60 yr old neighbor who asked what hospital my husband was in and then proceeded to tell me she would never go there and they really messed up her sister when she was there....but she was sure he'd be fine.   I just make an excuse and walk away.  Some people just can't be taught!    You write that book and I'll purchase many copies to hand out!!

Hubby is back in the hospital with dehydration - was not a happy camper when he went for a bag of fluids yesterday after the surgeon's nurse called and said he just had to pop in for some fluids - then they told him they were keeping him.  He had an awesome nurse though that spent hours just hanging out with us and really calmed him down.  Same with the surgical resident who came in, pulled up a chair and just calming explained why they thought he should stay the night.   There are more good ones than bad thankfully!

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Prayers and good vibes are going your way.

 

I hope he gets out of there quick.

 

Hugs.

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for the update, Joe. I have been wondering how you've been tolerating the treatments.

Steve and I agree 100%. The last thing he wants is to be treated like someone who is sick. As a couple, we don't want people to approach us like we have a problem. Hate the sympathy in peoples eyes. I find a lot of this depends on how Steve looks. If he is recovering from surgery or a complication and looks sick, then people treat him like he's going to drop at any second. It's annoying. It makes me think back to all the dumb things I've likely said to people. Back before I knew any better.

Steve also does not respond well to the smothering/motherly approach. Sometimes he will catch me staring at him, wondering how he is feeling. This bugs him too.

Hang in there Joe. Only 6 more to go! I've always enjoyed your posts. Nice to hear from you.

Chelsea

jen2012
Posts: 1196
Joined: Aug 2012

Me again...as a spouse i find it strange the things people say to me that they wouldnt say to him. Or the questions they ask...like since he just had surgery the question is "did they get all the cancer" or "is he cured" ive been able to put it off for now by saying we havent heard the path report yet....but how awkward. I do know i would never ask that question...and dont really know how to respond. But the too positive people..."oh he'll be fine" gets to me too. Hard to please maybe..

Chelsea71
Posts: 1170
Joined: Sep 2012

Sometimes people that I don't even know that well will ask me, "I heard your husband has cancer. What stage is he?". Any question about the stage seems rude to me.

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

I think you said what all of us feel......sending positive energy to all.. ~ Ann

Trubrit's picture
Trubrit
Posts: 1423
Joined: Jan 2013

When I was first diagnosed, EVERYBODY looked at me like I was dying.  It got the point one day, when a sweet aquaintance burst out crying when she saw me, I just blurted out "I'm not dead yet'.  

At church people either avoid me or come up with either the 'you're dying' look, or stories about their aunt 'Who died of that'. 

In the end, I got up in front of the congregation, laid it out, told them I'm not dying (we're all dying of course), I'm not contagious, and all I needed from them were prayres and positive thoughts. 

I'm heading towards radiation (beginning of June). Whats it like to lay there? Does it hurt? 

db8ne1's picture
db8ne1
Posts: 90
Joined: Feb 2013

I had radiation and chem prior to my resection surgery.  It obliterated the malignant tumor (radiologist and surgeon referred to it as an "ulcer" rather than a "tumor" once chemoradiation was through - as that's what it looked like on the post therapy endoscopic ultrasound). Further, there appeared to be at least one lymph node involved prior to therapy - which disappeared post therapy, as well.  Post surgery, pathology came back that all was benign.  So, the chemoradiation appeared to have done its job well. (I hope!).

As for the radiation - I received it 5 times a week for 6 weeks.  To enhance the radiation I received 5FU 5 days a week, as well.  I wore a pump attached to my power port. The radiation is not painful - you don't even feel it.  It lasts like 5-10 minutes.  Prior to receiving radiation you will spend about 1 1/2 - 2 hours in the "staging" process where they do scans and calculations to ensure they are fousing on the correct areas.  They will make a mold of your legs to make sure you are placed in the exact same position for each radiation session.  They told me to make sure I maintained by weight - so that they wouldn't have to "re-stage" during the process.  (REALLY?  That was the ONLY light at the end of the tunnel for me: potential weight loss!!!).  They will also give you a "dot" tatoo on your belly and each hip for the same purpose.

I believe that people that are heavier (I am) can get radiation burns more easily - as the rads have to penetrate more layers.  However, I had NO burns.  I used Aloe Vera and Aquafore religiously - to help prevent the burns and relieve the skin of any irritations.  I covered all areas from my hips to my pelvic area daily.  I got "boy briefs" for women to wear and pretty much covered any area that the briefs covered.  IMPORTANT:  Make sure your skin is clean, dry, and free of any products BEFORE each radiation session.  Apply products only AFTER radiation.

Also, when showering - use only basic soaps.  I used Ivory - as it was recommended.  Also, don't RUB dry.  Use a towel to pat dry and then either air dry or use a hair dryer (NO HEAT - AIR ONLY).  No heat or cold on radiated areas.

The last week they changed the radiation a bit so it was even more focused on the tumor. It was intense and I got very bad diahhrea - and subsequently a sore bottom.  I took advantage of sitz baths, vitamin e oil, A&D ointment, moist wipes, etc.

Radiation keeps working for weeks/months after they stop the actual therapy.  So, it took a few weeks for me to get back to "normal" after the radiation therapy stopped.  (Last day of chemoradiation was 2/13. Surgery was 4/11).

I hope all goes well for you.

Let me know if you have any other questions!

J

Trubrit's picture
Trubrit
Posts: 1423
Joined: Jan 2013

Great advice and thank you so very much. 

I'm dong the 5FU for six weeks too. 

I've copied it and emailed it to myself.

db8ne1's picture
db8ne1
Posts: 90
Joined: Feb 2013

It looks like we are pretty much on the same "path". 

I worked full time during my chemoradiation as the side effects were not bad - except for the last couple of weeks. Fatigue was really the most prevalent side effect - and since the side effects are cumulative - it wasn't until the end of the 6 weeks that it much more noticable.  I bonded with my furniture (bed and couch) every night and weekend for some time!

Frankly, the original chemoradiation didn't bother me and surgery wasn't as bad as it could have been.  (This was my first ever major surgery - not to mention illness). What I am NOT looking forward to is the upcoming FOLFOX treatments starting in a couple of weeks.  Ugh!

Let me know if you have any further questions.  I hope all goes well for you...let me know.

Best,

 

J

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

My beau and I plan things to do in spite of what the future may bring....

 

Wasted effort to worry about it...thumb your nose at it.  That isn't to say you should not acknowlege the reality of your fight, but after all is planned, etc, go for the joy!  (IMHO).

 

I asked to postpone one treatment, I remember, so that I could stay and extra 4 days in The Netherlands.  I still look at that pic (me, bundled up, standing in front of an historic tower in Amsterdam) snow all around me FREEZING my butt...but the biggest SMILE on my face!!!  And, I chuckle when I remember the plane ride to Holland....mask in place because the gal next to me was sick and kept sneezing and coughing.  Just after my meal arrived, she coughed in it.  I, being the sweet person I am (REALLY angry at this point), put my attendant call button on, and demanded a new meal, explaining that I was in treatment for cancer, with a weakened immune system, and what my seat mate (I didn't know her) had done.  

The gal left, and I didn't see her again until the seatbelt sign was lit for landing.

As you said, dearest....don't treat me as if I'm dying....I might just surprise you and survive!!!

 

BIG hugs, Kathi

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

Love your post!  Luckily where I go to get treatments, the nurses are very positive.  Makes a huge difference in one's attitude.

Deena11
Posts: 193
Joined: Nov 2012

I know what you mean about people saying things unintentionally that seem kind of uncaring.  I also had a "friend" who told me her friend had colon cancer and died.  This was right after I found out I had colon cancer.  I was already pretty terrified and her comment scared the poop (no pun intended) out of me.  I'm sure she didn't mean to scare me but I stopped talking to her after that.  I needed cheerleaders and fortunately most of my friends were very positive.  My nurses at the infusion center were also very cheerful and upbeat. 

Not sure why but almost the whole time I was going through chemo, I was always on the verge of tears.  I broke down at the drop of a hat.   When people were unusually kind, I'd start crying.  One time some little girls were in the lobby of the cancer center handing out goody bags to the chemo patients.  The bag had crossword puzzle books, little bottles of lotions, mints, a hand knit cap, and a hand knit blanket in them.  When I looked in the bag, I was so touched, I burst into tears.  I think it may have upset some of the girls but their thoughtfulness just made me bawl like a baby.

 

Trubrit's picture
Trubrit
Posts: 1423
Joined: Jan 2013

My emotions are also close (if not on top of ) the surface. 

Part of my problem I believe is hormonal. I'm 54, and was having regualr periods until the FOLFOX started. Then it seems I whipped into the old menopause symptoms, crying at the drop of a hat, hot flashes, luckily no mood swings. 

As you know, you're not alone. 

Deena11
Posts: 193
Joined: Nov 2012

Same thing happened to me, Trubit.  The good news is, after I finished chemo...my emotions stabilized.

Kathleen808's picture
Kathleen808
Posts: 2301
Joined: Jan 2009

Joe,

You're just great!  Thank you for a well thought out post.  You are one heck of a postive guy!

 

Aloha,

Kathleen

Deena11
Posts: 193
Joined: Nov 2012

Just wanted you to know your post did make me smile.  Staying positive is a key to healing, I believe.

PhillieG's picture
PhillieG
Posts: 4667
Joined: May 2005

I know what you mean about people starting those "I had an uncle who was DX with blah, blah, blah... and yada, yada, yada he died a horrible death". I've found that often people know what to do when they hear someone has cancer so they come up with what might have been their only contact with cancer.

I noticed that I sort of "size-up" who's asking me about cancer or who I'm talking with and tell them what I think they can handle. Often I give the doing great, good, not bad, or a meh. I feel fairly normal. I know I won't feel like I did pre-cancer. Just saying...

:-)

Saying

 

Trubrit's picture
Trubrit
Posts: 1423
Joined: Jan 2013

I'm British (English), and I have arrived.

Love you drawing. 

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