Patient Advocates

I received a "tweet" that said I was listed on Listly's list of 300+ patient advocates.

http://list.ly/list/4V0-300-plus-patient-advocates-on-twitter#item_970146?

I'm not really familiar with this list but I'm going to check it out.  I'm #316!  You can follow me on Twitter through the link on that site.  I'll try and add a "twitter" button on my blog too.  I don't tweet much--I'm hardly online anymore after working hours.  I spend most of my day on a computer and the last thing I really want to do at night it spend more time on it!  Of course with smart phones and iPads it not easy to get away from our online "life".

So what is a patient advocate?

Patient advocacy is an area of lay specialization in health care concerned with advocacy for patients, survivors and carers. Typical advocacy activities are: patient rights, matters of privacy, confidentiality or informed consent, patient representation, awareness building, and support and education of patients, survivors and their carers. Patient advocates give a voice to patients, survivors and their carers on health-care related (public) fora, informing the public, the political and regulatory world, health-care providers (hospitals, insurers, pharmaceutical companies etc.), organisations of health-care professionals, the educational world and last but not least the medical and pharmaceutical research communities.

Patient advocacy in its current form finds its origins in the early days of cancer research and treatment, in the 1950s. It's part of the notion of Total Care, a term coined by Sidney Farber, a Harvard physician and cancer researcher, referring to the treatment of children suffering from leukemia where "the cancer clinician treated the family as a whole".[1] The concept of Total Care subordinated clinical investigation to patient welfare ... "clinical investigation in the field of cancer may be carried out only as part of the total care of the patient" (Farber et al.,1956).[2] Cancer patients are usually not in a position to take an assertive stance, and even less so in the 50s; clinicians recruited patients for tests and suspicion reigned at the NIH as researchers had to convince doctors and patients they weren't experimenting on people. In order to properly represent the patients in this medico-legal and ethical discussion patient advocacy came into being as a way to make the voice of the patient heard.[3] http://en.wikipedia.org/wiki/Patient_advocacy

I'm not sure I consider myself a "patient advocate".  I started my blog to keep my friends and family informed on my medical issues and treatment.  Of course, I think most personal cancer blogs start out that way.  I do want to share what I learn along the way and help others.  I'd like to do more but with working full-time, I just don't have the "time" or energy to keep up with everything.

To me, a Patient Advocate is someone who "stands for the patient". Helps them navigate this world we call "cancer".  Lends moral support, medical information and shares treatment experiences.

What is a Patient Advocate to you?

 

Fake Cancer Claims

Lately there have been 3 instances of people faking a cancer diagnosis (online support groups) either to get money or attention or both.  One was a local girl who bilked people out of thousands of dollars.  She even had her place of employment fooled.  They held a fund raiser for her and raised $16,000!  She also received money from non-profits but they won't say which.  You can read the story here:  Charges-filed-against-utah-woman-accused

Two other instances were on a "community" website.  I won't say which but it is one I go to occasionally and read up on how people are doing.  Two young women.  Diagnosed with two serious cancers. One was kidney and the other was endometrial and colon cancer.  One girl died.  There were over 100 posts on her blog.  IT WAS ALL FAKE!  The other blog just disappeared, however, I also followed her on Instagram.  Then that one disappeared and I received a "follow" request from her again and when I clicked on the link, it was from another person who said this girl was a total fake!  I found out that it was true.  I don't understand people mental frame of mind that can do this.  Don't they realize it hurts all of us who are REAL?  I know some are just plain criminals and want to milk money out of people however they can.  Sociopaths.  Others may be mentally ill and craving attention.

When I googled "fake cancer blogs" to find the article about the girl here in Utah, I was shocked to see how many reports came up of people faking their cancer diagnosis (or their child's) for financial gain (or in one case, breast implants).  Really?

I don't know how you can tell who is real and who is not.  I guess you just take your chances in the online media and communities.  Be careful who you donate too!  Donate to a charitable organization if you can.

Please know this.  I am real.  Yes, I have hair.  No, I have never had chemo but even if I had, not all chemo causes hair loss.  I have scars.  I have pathology reports.  Even though those can probably be fakes pretty easily.  My scars can't.  Just sayin....

Happy New Year!

Happy 2015!

I had one goal for 2014.  I'm not calling it a "resolution" because I had little control over it.  My goal? No major surgery!  Yup.  I made it.  Nothing major in 2014.  Only one minor procedure completely unrelated to cancer.  I'm not sure if I should set any goals for 2015.  I could keep with the same theme and probably be safe.

A few personal milestones in 2014.

• I was laid-off from my job of 3 years after a cancer diagnosis and two surgeries.  This was after my boss told me they would do whatever necessary to support me.  Right.  Lay me off me and take my insurance away unless you sign this "release" that states you won't sue us! Blackmail?  You bet!  Stress?  Nah.  No stress there.
• I got a job after 2 months.  It's a great job.  I like it a lot.  I actually work for an insurance company now.  Ironic?  I think so.  Oh, I also make more money than I did before (but my insurance costs me more and I had to switch around some doctors but not my oncologist).
• Remained stable according to my blood work (last scan was in February, 2014 a few days after I was laid-off my job).  I have not had a scan since. 
• Attended my first Dressage show with my horse Abbie.  We got a second place.  It was a really small show but I was proud of how well she handle the "show" atmosphere.  It was her second show ever.  

Up in 2015: What's next?

• Bloodwork scheduled for next week.  I'm not expecting any changes.  I still feel good with no carcinoid syndrome symptoms.  I do have a lot of headaches but this could be from the Sandostatin or it may be my sinus's.  I'm calling a doctor tomorrow.
• Schedule a scan before July 1st since that's when my insurance deductible kicks in again.  since I've met my deductible, I'd like to get it before I have to reach it again.  I have not (for the first time since diagnosis) met my maximum out-of-pocket.
• Switch insurance to my employee health plan.  My oncologists clinic is now part of our network.  I have no reason not to switch.  I'm very, very excited as this will save me some $$$.
• I'd really like to go to another couple of Dressage shows.  I'm not sure if I can afford it but I'm going to try.
• Go on a sister's trip.  Its been too long!  Even if we keep it domestic.  

Check out the TOP TEN Highlights of the Year for Carcinoid-Neuroendocrine Cancer
from The Carcinoid Foundation website:  https://carcinoid.wordpress.com/2014/12/18/10-highlights-of-the-year-2014-for-the-carcinoid-and-neuroendocrine-tumor-community/

1) Gallium 68 Clinical Studies
2) PRRT Clinical Trials
3) FDA Approves Lanreotide for Gastroenteropancreatic Neuroendocrine Tumors
4) Immunotherapy for NETs
5) Global NET Patient Survey (yes, I took part in this)
6) NET Conferences
7) NET Cancer Day
8) ONCLive Features Series on pancreatic Neuroendocrine Tumors
9) Warner Advocacy Award
10) NETs in the News and on Television (link to the BYU men's basketball coach here in Utah w/PNET.


Here's to a safe and healthy 2015!