Monday, January 21, 2013

Twitter and Cancer Support

We all know Facebook. It's a way to keep in touch with folks. A way to brag a bit about our accomplishments, promote our favorite causes, and virtually stalk our ex friends and lovers.   

Then there is Twitter. I created my twitter account several months ago, viewing it simply as a way to follow some athletes and public figures.  It turned out to be a source of news almost right as it happens.  It's a pretty powerful source of information.

Twitter does so much more.  For the last couple of years, I'd been trying to refinance our house, to no avail. Our loan is upside down and not a Freddie or Fannie loan. I spoke with the bank and mortgage brokers. The bank wasn't going to budge. Until Twitter. I tweeted one random tweet about my frustration with Citibank and said that they were unwilling to help a cancer patient reduce his monthly payments. Yes, I played the cancer card, but I think that is my prerogative. Lo and behold, the very next day I was contacted by Citibank and they were ready to help. I wasn't looking for a principle reduction or anything like that. I simply wanted a interest rate that reflected the current rate. Bam, a couple of months later, I am refinanced. My interest rate went from over 6 to under 3. That is huge.

Also a few months back, I was fighting my work's human resources over an arcane policy that really wasn't employee or recovering patient friendly. My goal all along this cancer ride has been to work as much as possible. They city's policy, though, isn't necessarily geared to the same goal.  I was getting no where in my attempts to reach a solution with the H.R. folks. So I took to twitter.  Next thing you know, I was contacted by a local reporter and a city councilman, wondering what's up. I also heard from my bosses that angry calls were coming in from City Hall with people wondering what the heck I was up. Folks were pissed, they don't like to get called out. Those were some interesting interactions.  The problem never got resolved, but I shelved my fight, given I'm back at work full time and the issue is not an issue. It may rear its ugly head again. And, really, the City should update its policy to reflect what an employee needs to recover from an illness. I know of others who have been impacted by this policy.  In March, I am hosting a Cure Talk panel discussion about working and cancer. I want to get a representative from the local cancer legal resource group. I think this is a massively important subject. How cancer patients are dealt with in the work place is a needed discussion topic.

These are just examples of the reach of Twitter or even social media in general.  But what outweighs it all for me, is the discovery of an amazing online support network. Through Twitter I get and give encouragement. Other myeloma patients cheer me on if I tweet something about my latest lab results. If I'm feeling particularly jacked up from my steroids, I can tweet that, and someone will respond back with a joke about how they manage their steroid high.  It truly is an amazing network. There is a network of fellow patients out there who I'd consider friends.  The thing I've learned about cancer is that it changes your mindset. Myeloma, for me, is something that now underlies everything I do. I feel great and from many people's perspective, I'm recovered and no worse for the wear. True but not true.  I 'd say you need to be a cancer patient or a caregiver to understand the complete mental aspect of all this. There are times I feel taxed by it all and am ready to take a mental vacation. I think I do a good job of balancing the emotions. But it is a huge help to have this network of fellow patients and caregivers who understand the impact of myeloma on our psyche.  I'm lucky to have it.

Just to be clear, I also tweet a lot of nonsense. I've heard  Twitter referred to a depository of brain farts.Again true, but there is value as well. You can find me at @mpg61

1 comment:

  1. Matt, I'm truly touched by this blog entry - and that you also put my work on your blog. thanks for that - and thanks for being you.
    Lotsa love, Mom


Berenson Oncology Success Rate

 Some reading about my myeloma specialist's success rate. A press release and an article from Targeted Oncology.