MRF Blog

The Power of Two

September 30, 2011 | Categories: Treatment

 

When a doctor tells a patient they have cancer, they take great pains to explain the situation.  The better docs will use lay-language and talk about treatment plans and next steps.  More often than not, however, it is a wasted conversation.  A patient hears “you have cancer” then everything else is a blur.  The physician might as well be reciting a Shakespearean sonnet in Swahili for all the good it does.

And not all of the doctors are that careful.  I recall a patient whose doctor went into a long conversation about tests, approaches, strategies.  She finally stopped him and said, “Wait a minute.  Are you saying I have cancer?”  He had never said the words, had just launched into the treatment plan.

The fact is, with cancer it is important to have a second set of eyes and ears, someone who can help sort through the language and the data.  Most of us do not, in our daily conversation, use words like lymphedema, resection, embolization, immunotherapy.  And we certainly don’t talk about PI3 kinase inhibitors over coffee with our friends.

I remember vividly a call from a person who was thinking through treatment options for melanoma.  She said, “I know you aren’t a doctor, and I am not looking for medical advice.  I just need to think this through with someone who knows the language.” 

But it isn’t just about the technology, it is about understanding.  People who share a diagnosis have an instant bond.  They understand one another’s fears and uncertainties.  No one has to explain the meaning of scan anxiety, or describe the biting-on-aluminum foil feeling of finding a new lump under the skin.

A great number of these  connections happen through our online community, www.mpip.org.  But sometimes more is needed.  So, we are starting a new program at MRF through which we will pair up patients.  We don’t know quite what to call the program—maybe a “buddy” program, but we are not letting the lack of a name hold us back.  It will start small, with a handful of volunteers receiving specific training.  But it could become a critical first step for every person diagnosed with melanoma. 

Imagine being just diagnosed with Stage IV melanoma and being able to have regular calls with another Stage IV patient.  Imagine being Stage IIIa fully resected and struggling with what treatment to have, if any. Or being a young woman with melanoma, finding others just like you.   Now you can speak to someone else who has walked that path. 

This program is being launched because we’ve seen the amazing impact that people on MPIP can have on one another.  It is positive and frequently life-extending.  Literally.  This program will be another way we can ensure that people with melanoma are w well informed and well supported so they can live longer and better.

Cancer is a challenging journey that is in many regards highly isolating.  No-one should walk this alone.  No-one.

Comments

shelbug66 - (10/7/2011 - 2:57pm)

I think this is an exceptional idea.  Even though I'm 'only' Stage 1b, I know it helps a lot to read information of other people at the same stage.  It helps me to realize the things I worry about aren't so crazy!!  Having a 'buddy' would be extremely helpful!!!

 

Shelley

Just keep swimming...Just keep swimming!!!!

- (10/7/2011 - 9:59pm)

I have stage IV and have been fighting this for over 4 years now. Although I have a few friends on facebook who also have Melanoma, I would be interested in having some sort of a "buddy" When this is launched I will signing up! Thanks MRF!

caochao - (2/8/2012 - 3:23am)

I have stage IV and have been fighting this for over 4 years now. Although I have a few friends on facebook who also have Melanoma, I would be interested in having some sort of a "buddy" When this is launched I will signing up! Thanks MRF! 

andalusy - (7/18/2012 - 12:21am)

I think this is an exceptional idea.  Even though I'm 'only' Stage 1b, I know it helps a lot to read information of other people at the same stageالعاب تلبيس  .  It helps me to realize the things I worry about aren't so crazy!!  Having a 'buddy' would be extremely helpful!!!

- (6/18/2013 - 9:40am)

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