Wednesday, October 28, 2009

Took the words out of my mouth...

My newest best friend I met less than two months ago. We were part of a gathering in Little Rock, AR for the "Big Dam Walk." It was a walk for colon cancer over a big damn. A bunch of past and present Colondar models were in attendance. That included Becca (http://www.colonclub.com/2008August.html). Somehow people were just drawn to her...myself included. Anyhoo...she and I were up talking at 3am last night. (A common thing for people on chemo is insomnia.) We are both stage IV colon cancer survivors and we have a bunch in common with cancer, but it has also caused us to think a lot alike.

I didn't know until last night that she kept a blog, too. I read an entry she wrote this week. I felt like I had dictated it to her. Her thoughts are exactly mine. And since she already put them into words, I would like to share: (either click the link to her blog or read the text below)

http://thecolonchronicles.blogspot.com/2009/10/life-support-in-our-social-networking.html

When you are diagnosed, you have a few choices in terms of ways in which to cope. Among those choices are things like support groups, or networking groups of other people with cancer. In our social-networking-crazed world, its also easy (if almost impossible NOT) to build a community of cancery-people online. All the myriad of websites with message boards, email groups, blogs and of course...the big bad daddy of 'em all, Facebook. Over the years, I've met people who've either been through the same things I have for colon cancer, OR have had various cancers of their own but for some reason or another, we've connected and relate to each other. Sites such as The Colon Club, Imerman Angels, and Planet Cancer to name a few, have allowed me to either reach out to, or be reached by a huge network of patients/survivors/caregivers, etc. Many of these people I keep in more regular contact with via Facebook.
I actually have my "friends lists" in my Facebook broken down into "Colon Cancer People" and "Other Cancer People" and they're both pretty lengthy.
I figured it was healthy and good to have people you can vent to, and relate to in ways you never ever could to even the most well-meaning friend or family member. But inevitably, if you have a network of cancer-folk you will also lose some of those folk. And chances are, lose them to the very thing that you yourself are fighting. No matter how close you were to a person, or how long you knew them, ANY interaction in the cancer world, even a brief one, can form an intense bond.
I've posted on here before about someone I knew and was close to, passing away from her cancer. And in the time since then (roughly a year ago) several others I've met have passed away from it as well.
As of late I've been mulling over whether having this community of cancer-folk is actually a good and healthy thing after all? I recently was in an email discussion back n forth with a handful of other colon cancer survivors (of various lengths of time) and one of them made a comment about how he was glad he was finally getting "past this cancer crap" and beginning to "move on with life". It wasn't a comment directed at me specifically, but at the group as a whole. Many in the group had cancer quite a number of years ago (8, 10, 13 etc). Just those simple comments were enough to simultaneously enrage me with jealousy, and fill me with sadness and resentment.
I would LOVE to be able to get past cancer. I would give anything to be able to move on with life. I don't see how that is ever possible for me however. I mean, yes, I can still do other things and not dwell day to day on cancer, cancer, cancer. I can try my best to not let it consume me every minute of every hour. But ultimately the fact still remains that every day, twice a day, I have to remember to take my chemo pills. And every week, for an hour or so every week, I have to truck myself up to the burbies to get an infusion at my oncologists office. The time in between all of that, I am sometimes lucky to be able to distract myself and not think about my ultimate demise, or perhaps any of the MANY ramifications that come about from having cancer, or being on treatment. Although, successful in that as I may be, I can easily log into facebook or even just check my email and instantly be reminded about it in someway. Some friend will post about how a scan has come back clear! Or another will send a link to an awesome organization we cancery-people should know about. Or maybe there's a fundraiser, young adult cancer-mixer, or a walk/run for awareness we should support. Or...and these are the "or's" you begin to dread: You randomly happen upon a friends profile page in passing only to realize from the comments posted that a person who, not more than a week prior, you were reading about them celebrating a 27th birthday...or who that VERY day you had just addressed a birthday card to send to her, belated of course...apparently just passed away the day before. I don't know whats more sad, the fact that someone you know just died way too young and for not a good enough reason...or the fact that you find out on a website...or the fact that its not all that uncommon of an thing.
I begin to think about how if I didn't know all these people...all these wonderful, amazing, remarkable, hilarious, strong, intelligent, accomplished, loving, kind people...that I wouldn't have nearly as much sadness and sorrow. To be fair, with or without knowing them, I have my fair share of it. But with knowing all of these new friends, I've expanded the potential for grief many times over. So is that good for your psyche? Is it healthy and healing to have to continuously face the end result to things in which you yourself are facing? In the same respect if I ignored all these new friends. If i disassociated myself from all the organizations I've connected to that do so much towards cancer-support...is that any healthier? Would denial be any better of a way to cope? Common knowledge would lead me to think no. But I would be remiss if I did not admit that I don't always believe common knowledge knows what the hell it's talking about!! Of course, ultimately, there isn't a right or wrong answer. However, I'd love to hear others thoughts on this matter.

3 comments:

Katie Mac said...

I love you Shawn. I miss you so much too :( Let's do something over Christmas!

Melissa said...

As with most things, I think everything in moderation is the key. The understanding and support that your "cancer friends" can give you is markedly different than what the rest of us can muster, simply because we haven't been there like they have. On the other hand, I'm sure sometimes it's nice to hear from and be with people who *don't* have that understanding so you can maybe forget for a moment what makes your path different and more difficult that others'. Both are good for you, but not to the exclusion of the other.

(By the way, on your prior post, I would ask your doctor which medication he would choose if he were in your shoes. I'm sure it's a hard choice, but whichever route you choose, I'm sure you'll be in good hands. Keep us posted.)

JESSICA said...

I agree that you need a good mixture of both. When you have never experienced this for yourself, as much as you love someone and want to be there to support them, you will never be able to fully grasp what they are going through, never really know the right things to say to encourage them. If you say "I hope you feel better", will that magically take away their pain and sickness? If you say "be strong" do you really know what it takes to find that much strength and courage? When you say "have faith", will it erase all their fears and doubts? When you say "think positive", will the bad thoughts that stir within their minds suddenly disappear? When you say "I know it sucks", do you really know how bad it sucks? When you say "the sun will come out tomorrow", will it make all the sad and dark moments vanish, make the gray clouds go away? I think it is important to be able to have people around you that are going through the motions as you are, people you can talk to that truly get it, have honestly been there and understand, can encourage and support you with a full understanding of what you are facing. I have said all the above to you, and I believed and hoped for it with all my heart, but I could not fully understand what I was asking, and what it would take to make it so. I will keep telling you these things because I am your sister, and I love you, but you need the support of people as well, that are experienced and qualified to do so.