Tuesday, May 23, 2017

Off blog till June 1st..blog highjacked by some crazy Bible sight apologies..not me

Hi All.

Doing a bit of reorganizing till the first!  I may pop in but not sure.  Thank You and please read all 600 posts if you are new here!

Happy Summer!

Friday, May 19, 2017

Cancer Survivor...#16 year Cancer Patient Says....What If Survivorship is Being Taught All Wrong?

This has been on my mind.......what if everything they are teaching you to care for yourself in Cancer Survivorship is all wrong in the long term?  Or what folks are teaching you is OK but they are missing some of the most important long term aspects of care?  I think that is how I really feel.  As I travel around....and talk to other patients something is missing.....here is what I think.

1.  I think every patient needs a course in assertiveness training.  A business communications class.  Learn how to speak to people respectfully...kindly and get what you need.  In rare cancer survivorship if you do not have this skill....it could be deadly.

2.  Money.......I will make a separate post about this because it is complicated however the amount of people not even having a budget continues to amaze me. 

Not knowing how your health, life, disability, insurance actually works...I get it....get someone you trust to teach you. 

3. Don't blindly trust everyone....if your regular oncologist tells you time and time again that you do not need a specialist...don't listen!!!!  Get to a specialist in your disease....your life depends on it.

4. Every time I hear from a cancer patient hiding their disease so they do not loose their jobs, miss a promotion, just get side lined, etc ...my heart breaks.   Understand your benefits etc when you are well. 

5. Many Survivorship programs hire young Therapists to do big jobs in support groups and individual care.  They had all the schooling and learned the basic answers to a cancer patients needs.....but they have not "been there" Thank Heavens...and they miss much although lovely people.  So if you are really looking to talk and gain a working knowledge....maybe find someone with a bit of experience....someone with loads of "empathy" ....not just sympathy.

6.  Create a working process for your care.....create a world that you can live in ..control what you can.....when everything else is so not in control

Tuesday, May 16, 2017

#16 Year Cancer Patient Says.....The Robots Are Coming??!!!! and other Machines

I read lots of medical stuff...even on Twitter....I follow some brilliant medical folks that post articles from all over the world.   I can not imagine being in the ER and my first contact interview is with a robot....a real robot checking me in.  So you might not visit with a real human until the robot calls them?

Obviously if you are truly having an "event"...the humans will come running.  However I can not help thinking that everyday we are becoming more and more inhuman towards each other and the World at large.....that all of this machinery just carries us further away from each other everyday.

Even here on social media I believe that partially me typing and you reading...inclusive of Facebook, Twitter, Instagram, etc brings us further away from actually being with other human beings.  There is no replacement for seeing others in person....none. 

I understand the need for innovation, creativity, and making money.....but will all of these inventions actually trickle down to the average patient?   How will we pay in the future for anything medical amidst all of this innovation? 

As a Patient and Patient Advocate I am all for progress, new ideas, making money.  In that thought process and other issues we can not forget the average patient in care and how they are really progressing in the everyday care that they receive.

I believe in all of the new innovations we loose sight of our real Patients.  If we can invent a robot to check a suffering person into care....why cant we create a decent healthcare system?


Monday, May 15, 2017

#16 Year Cancer Patient Says....Back to the Business of Healthcare ...Secrets People Tell Me and More

I have a lot that I do not discuss on any given day..everyday I get messages from people that I do not know.....people I will never meet in person....but as far as cancer goes...I know them.

Some secrets are.....

1.  I am so tired....I fought for so long...I can't talk to people I know... about how tired and scared I really am.  They just think that I will live forever...that I can keep doing endless medical things to myself and everything is ok.   I don't feel OK.  How do you feel about 16 years?   I am only doing 3...or 10...etc  How do you do this? 

2.  We just adopted 2 children and I am going to leave my partner with them alone.....I don't know how to do that.   How do I do that?

3.  I ran out of food the other day and did not tell anyone....I am embarrassed....I get food money tomorrow....I went to the food bank...no one knows I did that.   How do I get help?

4.  I miss my hair....I miss Me....where do I find Me?  

5.  My doctor (who is not a Sarcoma Doctor)  talks to me like I am an idiot ......how do I get to a real doctor? 

6.  Not sure how to pay for this medication....I don't have $2,000 a month and insurance says I can not have it.......I am a single Mom with kids....can you help me get this medication...can you call my insurance company?  I am not poor enough or rich enough...must I fall through the cracks and be destitute to get help?  Is that how this works? 

7.  My company figured out how to fire me without my benefits....can you help me?  My savings are almost gone.....

8.  My Mom has Alzheimers and it costs about $5,000 a month for her care...do you do Alzheimers or just cancer?  We are running out of money...quickly..

This is the real face of healthcare ......F...You....Republicans that support this.....Others better stand up and fight or we will unseat You...or die trying.

Saturday, May 13, 2017

#16 year Cancer Patient Says...Happy Mother's Day ...Thoughts on this Day..Mom or Not

I am a Mom.  And if you have read here for a long time you know that not only do I have cancer for 16 years ...my kids also lost their Dad in 2006 of a heart attack.  On this Mother's day here is what I have to say and it may not be what you think......(remember I am a frustrated Stand Up Comic)

Yup.....you love me kids and I love you...that is a given..in our world anyway.  And yes...let us acknowledge that we have been through some mind blowing stuff together...Way more than I ever went through as a kid and even young adult for sure.

I will leave you someday....maybe sooner than later....who knows...I even died and woke back up in 2015 so who really knows?  I will hate leaving you whenever that is...because I know that I will miss so many things in your life....both good and bad.  

I never thought that I would have kids..no less twins.......I have come to the conclusion that kids change everything...they changed everything.....every single thing in my life I thought of differently.

The only other thing to do that in my life other than my kids ....was Cancer....because of the longevity of it in my life.....My Kids and Cancer are the two events that rocked my world in the best and worst ways.  The death of my ex Husband is a close third......very close.

So my advice to anyone that wants to be a Mom is.......in no particular order....

1.  Know that someday you will leave your kids...so you must make them strong, independent, and a little crazy.....teach them that they are fabulous and should speak up with respect, common sense and wit.

2.  Know that they are watching you....they watch everything you do and say.....even if you don't think so.  They know everything and what you do now will reflect on them now or later.  They are sponges.

3.  Kids are like a bowl of cherries.....some are easy and yummy...and some ....the pits....you must plant them and watch them grow....they might bloom slowly or later in life.  Don't make them feel bad for that.  Also.....let them be different.....different is good....very good.

4.  The guilt of being a single parent if you are one.....get over it....it serves no purpose....just do the best you can and that could be enough.

5.  Laugh...Laugh a lot...Scream with Joy and Dance ...grab moments when the days are hard....grab moments when the year is hard and you seem stuck.  Teach your kids to laugh...life can change for the bad in an instant but also for the good. 

6.  If you think you should do something and you are scared...do it anyway....You know what I mean...xo

Time...every morning I wake up with tumors everywhere I can't believe I got to wake up ...I am always thinking that I am wasting time.....it is so precious!   Don't waste time....don't forget to learn how to wiggle...wiggle means not accepting no for an answer and getting around it...learn wiggling.

Thursday, May 11, 2017

#16 Year Cancer Patient Says.....I am Screaming Can You Hear Me???????? (humor)

I am screaming on the inside....I am smoldering...My emotions are cooking....not in a crazy way....I am just in that place....I am in that place where I have to get really brave to stay here on Earth.  And I do not like it ....2 months shy of 16 years.....You  might think I am used to medical stuff....real medical stuff and you would be wrong....I have to gear up as a wave is coming ...a medical wave.  And all I want to do is enjoy life.....there is always a price these days...

And you can pass along some philosophical bullshit to me...but whatever you say, I have already been there...."I mean please after 16 years do not give me lines of bullshit"...I have heard all of them and then some....a small list of lines I get on a daily basis....:)...LOL

1.  You are not dying God has a purpose for You.....OY...I say OY
2.  You should feel grateful that it has not gone to your brain.....and how do we know this for sure????   LOL....I have not checked lately :)  That is not how grateful really works....seriously..
3.  Have you tried Snake Green with Polka Dot Grape Juice from the Mountains of Afganistan...it will cure You 3 weeks after drinking at a cost of $500 a teaspoon!
4.  You have Cancer because of a crime that you committed in a past life and for $2000 I can cure You!  (yes....someone said this to me)  Ugh

The list is endless...this is a small list.....

So I will keep screaming on the inside and do my best to stay here.......that is all I can do everyday....and I will keep typing until I can not anymore!!!!!

Guess I will go drink some Afganistanian Snake Juice right now....:))))))

Tomorrow back to business.....

Wednesday, May 10, 2017

#16 Year Cancer Pateint Says....Is Healthcare Really a Human Right? And other Random Related Thoughts......

Yes...it is ...every human being on Earth deserves enough food and clean water so that they are not hungry and can grow strong.  Every human being deserves a safe place to lay down at night and sleep free of harm, the cold, etc.  And every person on Earth should have basic healthcare so that they have a chance at a decent life.  That is all pretty simple and so NOT simple here in America for so many reasons.... way before both Clintons, Obama and even Trump came along.   Our healthcare crisis has been developing for 50 years or more.  No one was paying attention...none of us until the crazy bills started coming about 30 years ago.....and still no one paid attention.....no one that was really willing to try and change anything....

During this time Insurance Companies expanded their power immensely in their lobbying of Congress and their economic worth relative to our GNP (gross national product)...Medical Insurance companies are huge....if they go under we could have a depression.  They also paid many political folks by donating lots of money to campaigns.  Why don't we ever discuss the insurance companies and their role in all of this......???   They paid reps from all parties to be quiet.  Sad indeed. Maybe we can change this.  I want to hear from them.

In order to really change the system to anything that works better in truth....we must hold all responsible parties accountable.

The Insurance Companies ........where are you?  I get it.....The least CEO makes over 18 million a year and that is without bonus........

So.....suck us dry.....we loose houses...can't pay for meds.....people die without proper coverage....people choosing care over food.....How as Americans did we let this happen?

Disgusting.....Step Up ...Rise Up......

Tuesday, May 9, 2017

Cancer Survivor....About Acknowledgement and Long Term Survivorship

Over the years I have done much communicating with cancer patients in person and on line.  One of the number one issues they face is the feeling of acknowledgement on so many levels......

1.  Acknowledgement of the illness itself
2.  Acknowledgement of the fact that the person is still who they are and not just a disease
3.  Acknowledgement of fear.....death...not living a full life....fear for family and friends.....fear that people will run from them....the list is endless.....

Acknowledgement does not mean acceptance...it can just mean that I have a problem now how do I fix it....if it is fixable......and acknowledging something that could be hospice and death.  I am not there yet however I know many that are in hospice.

Today is an expression of my love for other long term survivors like myself.....the endless medical journey......whether it is 3, 5, 10, or 16 years like me......

The mind blowing procedures that we withstand to stay alive and heart ache when we can not fix something.....a major body part gets a tumor and we can't fix it.

Because with our knowledge.....and research .......after so many freaking years.....shouldn't we just be able to fix it???!!!!!  We develop a mindset that we can fix anything......

We have survived endless surgeries.....new experimental treatments.....chemo, radiation, emotional and physical craziness....and we did well for the most part.  And yet when the real time comes....we can't believe that our bodies are dying and we can not fix it.  There must be something!  And we see the heartache in our doctor's eyes as they have nothing to offer us except love and peace.

I understand this. 

To my close Cancer people in Hospice Today....My heart aches.....I have seen many friends pass in these 16 years.  Each person that I become close to takes a piece of my heart and soul with them......I miss you so.  Because you are the closest person to me...to this life that I never asked for...but we do the best we can everyday because that is who we are.   And when I go someday.....I am sorry to leave You xoxox  Tomorrow back to the business of Healthcare.

Monday, May 8, 2017

Cancer Survivor....16 Year Cancer Patient Says.... a Lot Today..Update and Info

There are two choices in life......you sit around and watch the world pass you by and have fear....sometimes paralyzing fear.....

Or you have a bit of fear and do whatever it takes to make your heart beat with life and joy....a couple of times I have gotten in my own way however as of late...nothing gets in my way.....

If you have read prior posts here or googled me.....I am never shy ....but all of us experience fear in illness or where ever.....These days I just absorb it.   I have found when I am really fearful....there was no reason and when I feel fine that is when the unexpected happens...so I make a great effort to go with the flow....see how things pan out and treat people the way that I expect to be treated.  Until the deep warning signs emerge in my soul......

The last couple of days I have been at pre op for a liver embolization.  This is not an unusual procedure.  Thousands do it every year all over the world.....however I am an unusual person as last time I had any procedure was two years ago when I died and woke up after 40 minutes of no oxygen to my brain and about 3 days in a coma....a miraculous recovery indeed.

Yesterday was at a visit with the head of anesthesia to make sure this does not happen again....hence the fear .......caution on my part and many questions..... and they too wanted to make sure as a patient that I was ready for this as well.

And then you sit and talk to people and you realize that perhaps the whole event could have been avoided for a couple of reasons....and then you realize what actually happened that day you died...really happened and the longer you sit there ....the angrier you become.....I hid it well.  I sat and listened and made friends.

So now I am sending a letter today to the doctors that declined my care....the anesthesiologist that was my doc that day in the ablation where I died and woke up 3 days later for no reason at all....

2 years later ....and two meetings later..with 2 anethesiologists......including the head of the department...it is time for someone other than the doctors that saved my life that day.....It is time for someone to F'ing say.....I am sorry!!!!!  Say to this patient.....I am sorry for what happened to you on that day!!!   And I can assure you in the next procedure that we will do better!

Saying you are sorry does not admit blame.....it means you are truly sorry! Cefotitan...the drug given to me that day is related to penicillin ...about 10 to 25 %....I am allergic to penicillin...why was I given that drug Ever? 

A lesson in advocating for yourself...speak up...don't let medical issues pass you by...save your life...be proud and speak up .....I am no patient....I have no patience for people that treat me poorly.

I am not dying from another "accident"...not me...not ever!