My lack of presence on my webpage is because I’ve been busy breaking out of my cancer cocoon. Probably not the best analogy to use, at least in a physically metaphorical sense, as I went into my cocoon with flowing locks and have emerged looking like a disheveled caterpillar. However, on an emotional level at least, I’d like to think I’m a pretty bold butterfly. Anyway, caterpillars are still cute aren’t they.
I went into my cancer cocoon for my own sanity. The first few days post diagnosis I got a little enthusiastic with good old google. I read through message boards with the same trepidation one has when watching a horror movie; my eyes were hooked to the glowing screen and I just kept scrolling further and further into nail biting misery, imagining myself in every scenario, good and bad. It wasn’t pretty. I’ve never got the appeal of horror movies.
I wanted to find that balance between being my own self advocate, being knowledgeable on what I was facing whilst also focusing on keeping myself mentally happy and healthy. Although at the time my thoughts weren't that cohesive, all I knew was the more page hopping I did, the worse I felt. For me, trying to interpret my lab results or join community boards was turning me loony. I wasn't in a place to give support and wasn't ready to reach out to receive support from the community.
I buried myself in my family, put trust in my medical team and limited my google habit. I also listened to A LOT of 80’s/90’s i tunes radio (because it’s funky and I’m a dork, you should check it out), spent as much time outdoors as weather permitted (because sunshine makes me crazy happy) and when sunshine failed me I hid away in books with my oatmeal cookie habit (because Evie loves to bake and err, I’m greedy).
I have one extensive booklet on all things Hodgkin from the Lymphoma Research Foundation which was 100 odd pages of solid info written in a reassuringly soft tone which minimized my nail biting. I allowed myself to use a few trusted resources such as the Leukemia & Lymphoma Society (LLS) website, American Cancer Society and a few UK gems like McMillan Cancer Support and Cancer Research UK.
I banned myself from message board activity and focused my energy on living in the moment. My 2.5 year old Evie was a brilliant inspiration for this; when she’s happy she shows it, she hums when eating icecream, jumps up and down and runs in circles when we mention the park and then when she’s not happy, let’s just say, she lets you and your ears know it.
Then during one of my ventures on the LLS website last summer I came across the Light the Night Walk. That was the break in my cocoon. I wrote about it back then, but I found like I had found my people at that walk. It gave me hope, I came away inspired and I realized that maybe I was ready - ready to accept this new side to my identity and explore a little. I’m now getting more involved with LLS, but I will write about that another day because I’m excited about it and I’m rambling as it is.
I recently started to look at support out there for young adult cancer patients and I am impressed. Moreover I’m not scared of them anymore, I’m inspired. I went to a cancer conference for women the weekend before last where I was instantly taken aback by a beautiful girl sitting across from me in a sharp tailored jacked, fitted jeans and stunning face. I can honestly say, the fact she had no hair did not register until after her beauty and confidence. She was also lovely. Before leaving she gave me a torn bit of paper with her name and number. It’s like dating for friends, cancer friends and it leaves you with that warm fuzzy feeling. I texted her within 30 seconds, because life is short and I’m a dork, as you know.
I then went out with some of the greatest friends and let my hair down (ha-de-ha) with the help of margaritas, blues bars, the Chicago BlackHawks and a Tiki Bar.
Cheers to life outside of my cocoon and to awesome friends and support!