Thursday, January 16, 2014

Talking to friends and loved ones

Cancer can be an awful experience.  From the fear, the illness, the cost, the inconvenience, etc. cancer isn't something I would wish on anyone.

But there can be a silver lining....

Cancer can let you know just how much your community really loves you.  People rally when a loved one gets cancer.  Whether it is meals, rides to the clinic, sitting through chemotherapy, visits at the hospital etc, people will go the extra mile for a friend or loved on with cancer.

When people have a large enough community, keeping everyone up to date can be a real challenge.  Telling everyone about the victories (got through bone marrow biopsy, finished chemo, had a good scan) or sharing bad news (had to delay chemotherapy a week, hospitalized for antibiotics, cancer is back) can be really daunting when you feel like crap.

I've seen a number of patients make blogs of their experience (see here and here and here) as a way to let everyone stay up to speed with what is going on in their journey.  They can make entries of any length (short or long) that allows their support network to keep up to speed with what is going on.  Sometimes you just don't want to have to tell someone a part of your story that you've already told ten other people about, sometimes you want everyone to know your good news as soon as you can!

One of the reasons I am aware of these sites (and I deeply appreciate) is that patients have often linked their own blogs to mine for specific pages that make sense to link (ie. making sense of different types of lymphoma, what is R-CHOP or FCR chemotherapy, when to treat CLL etc).  I've heard several patients tell me my post on nutritional supplements was helpful getting a well intentioned but misguided friend to lay off.  Sometimes trying to tell people all the things you heard during your doctors visit can be quite difficult and linking to a nice summary is a lot easier than trying to explain it yourself.  If my blog can help in that way, I am delighted.

Quite frankly, those links from external sites help my blog rank higher in the google search results so I appreciate each and every one of them.

There are FANTASTIC blogging sites out there like carringbridge, wordpress, or even blogger that are extremely easy to start and maintain.  You really do not need to have any computer skills beyond what you would normally use to navigate the web.  If you are truly web-phobic, ask your kids, they can set it up for you.

There are a number of really great "chat groups" out there like cllforum or that are additional great venues but I would encourage anyone out there looking for a way to have their own "homepage" think about making their own blog.

Thanks for reading