Friday, June 2, 2017

A Crazy Bible Site has destroyed my blog

I am still trying to fix the fact that my blog name has been stolen.  Sorry.  Maybe it is a sign! :)

When I have time to work on it I will.

Let you all know.

I am OK ......I am going to snail mail google....this sucks!

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?

Right?


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.....