Student journalist wanting to hear survivor/patient stories

Do you want the public perception or the real deal?  If you want to have a story similar to the perky 'I never gave up' billboards they have up, you would not want to write my story or likely any of our stage iv gals.  If, however, you are interested in what the real face of breast cancer looks like - perhaps we could have a conversation.  Privacy is not an issue - censorship is.  And it is really important for people to know but my story, for one, will not raise one penny for the seemingly unattainable search for a cure.  We all continue to hope but the reality is - there isn't one and it is going to kill me.

Toeknee, why not change your slant and write about how media journalists misrepresent the breast cancer reality and twist it into either a fairytale story or one of fortitude overcoming the biologic disease process -- leaving the public with the impression that our "positive attitude" is what kills cancer cells and our despair causes them to flourish. We suffer from so much idiotic media coverage, and perhaps you could begin to expose that.

Good, toeknee! Now THAT would be a story worth researching and writing. I'm so sick of us bc veterans having to be the target of every journalist's need for an "inspiring" human interest story. Pink month (October -- bc awareness month) is the worst of it, but the stream of upbeat cancer stories never ends.

Komen and Oprah and the women's magazines only want "clean" stories about charming women who smiled their way through this extreme sport otherwise known as cancer treatment. They don't want anyone to know about Post Mastectomy Pain Syndrome or Lymphedema or Radiation-Induced Brachial Plexopathy, all results of our "life-saving" cancer treatment that can leave us in pain and disabled for whatever life we have left. They certainly don't want to feature the reality of women who are living permanently on chemotherapy because of mets, and who are struggling with all the side-effects as well as the sheer terror and end up LOOKING like they're struggling, not like they're waltzing through Eden.

No -- every journalist who talks about these things always feels the need to put the word "BRAVE" in every other sentence, to make us look like people called to inspire the universe with our grace and sheer will-power. I am sick of "brave." We do what we have to do to put one foot in front of the other, and a lot of the time it is not one bit pretty. We are not interested in being anybody's inspiration, we are interested in being well. And for far too many of us that will never again be possible.

Go tell THAT story, toeknee, and while you're at it, see if you can't make sure that more than just you and your professor read it.

So, okay, I just reread it and it sounds mad. Can't deny that, but wanted to make sure you didn't think I was mad at YOU, toeknee. Just ranting. Go for it,
Binney

Here is a quick little blurb of what it would be like: (although I am not little or quick)

My first go round with this crap was in 1998.  After 10 years of being cancer-free - I have mets to the spine and other bone - no organs so far.  I hurt so bad today that it is hard for me to sit at my desk.  I have still not come to terms with the fact that I have limitations and I can't do things I used to - making my bed is a chore.  If I turn just the wrong way, it is days of extra doses of pain meds.  To move in the morning - every morning - I have to get up hours before I have to be to work so that the meds can kick in so I CAN move.  Trying to make it to the bathroom first thing in the morning is an adventure - I know my doggie has to go as bad as I do but I have to go first and I shuffle my way there - literally telling my legs to move and hope I make it.  My doggie has learned to wait - he is wonderful.  I let him out, start the coffee and grab the handful of meds and supplements, grab my coffee, let the doggie back in and flop on the sofa for a good 45 minutes to an hour until the meds kick in and I can get a shower and get ready for work.  Everyday is the same.  As long as I keep the meds in me, the days are pretty good - today is not one of those days.  I did laundry and vacuumed and tried a little gardening - I ended up hiring someone to mow my grass for me - I won't be able to do that anymore.  I overdid it and it will be days before I won't be in this much pain - which is actually managable when I am not being stubborn and stupid and try to do too much on my own. 

I do see life a little differently but not in a real rosey way - I live in the now, for today as my tomorrow is uncertain.  I am not brave or strong or attitude positive - I am me and I am learning how to live with a disease that is going to kill me.  I do treatments and I take lots of meds and I do whatever is out there that might help me get one more day, month, year or years but that does not make me brave or strong or uplifted - it only makes me want to live.  I am not ready to die but I have to prepare to die.  I have made peace with my God, I have come to my state of grace and my material world is getting settled as well as my finances.  For all treatments, there are side effects - I take medication to counter the side effects.  I take medication for pain.  I take medication for the depression.  I take medication for the anxiety.  I take supplements to aide in the treatment.  I take supplements to replace what the treatment takes away.  I purchase things like laundry baskets on wheels because I can't carry them anymore.  I bought a taller potty so I don't have to sit so far down or try so hard to get back up.  I have massage devices in my vehicles and throughout my house.  I have moved my laptop to the living room as I cannot sit in my office chair for too long.  I am no longer very timely...I refuse to rush.  I try to eliminate stress as much as possible.  Hurry up is no longer part of my vocabulary.  I have learned how to not answer the phone.  I avoid people who call me brave and strong and I have eliminated the drama queens in my life.  To listen to the whining about the sniffles is beyond what I am interested in. 

Toni...there is more and I haven't even mentioned what I see in the mirror...and I am a lightweight when it comes to what really goes on with us.  I am only 7 months into the new journey of bc mets and it is only in my bones - I can still work and am pretty functional.  When the gentle treatments fail me, once I need to go to chemo and trials - there will be no more working and quality of life will become an issue...it isn't about giving up or being brave and strong - it is hope that somehow, someway we can keep ourselves alive long enough that a cure or some treatment that will prolong life with a quality of existence that is liveable comes along. 

As I said, I am new and a lightweight and my story isn't pretty but it just barely scratches the surface compared to what so many others are going through. 

With the ability to laugh at myself - and I do every morning on the way to the bathroom...(I would not find it funny if someone else made fun of me) I get through it - I can make fun of myself - the alternative is curl up in a ball and cry - and I do that too sometimes but the laughing is better.  (unless it hurts like today...LOL)

In a sense, I suppose my story would be the nicer of the ugly side for now.  There will be no happy ending, however.  I don't do the walks or donate - I tried to get help the first go around - not one blasted anything or anybody would help me - single mom, child 8 years old - just got laid off - I literally had to find a job and work right out of surgery and all through chemo so I keep my money for me - if there was a foundation that actually gave money to people, I might do that. 

Ok, I am going to quit here - my anger is starting to come out...PM me if you think this might be what you want to tell about.

Toni-

click on this link

http://www.urbanzen.org/index.php/videos

Thanks jancie...it was just a typical day living with this crap.  She did PM me - I got as far as my first time around.  I have to do the second part from home - I figured I would give her a condensed version of my journal from the beginning of the testing in August of 2009, dx in September 2009and blurbs up to the present.  If she wishes to use it - why not?  It is honest, real and only just begins to show what breast cancer is really like.  Funny - all this perky pink puff stuff raises money - but I started to think about the funds that are raised for the children - the children they show in most dire of conditions - I wonder if people really knew of the suffering - and the not so happy endings - if they may be even more willing to open their wallets to really try and SAVE a life.  Hummm.  After the NFL did the pink, I almost threw up.  I think there needs to be a new marketing slant to getting funds for truly life saving research.  My ta-ta's are gone - but my life isn't - save our lives - we can always get implants but we don't get a new life. 

Ok, down from the soapbox...LOL

BIG BIG HUGS!

Sharon