Monthly Archives: October 2011

Finding a support group in real life

26 Oct

I’ve just gotten back from my very first support group.  My feelings are mixed, much like they were before going.

Now – okay, fair enough. You might ask, ‘Hey Catherine, why are you scared of support groups when this entire website is one giant support system?’ And you’d be totally justified. And then you might wonder if it’s because I can’t handle ‘real life’ encounters, or maybe I’m anti-social? Or hey, just for fun, I could actually be a 45 year old man scratching his hairy belly and sipping a diet soda, blogging about breast cancer.

But let me reassure you, I hate diet soda.

And no, I am not anti-social (though, I am pro quiet and calm). In fact, I love one-on-ones with other people who have travelled a similar road, and think that meeting and sharing ideas is fantastic.

So then you may ask, why do you like going online for support? How come an online support system is easier to enjoy than real life?

Honestly, it’s not always easier. I just know that when I turn on my computer, I can pick and choose the content suitable content for that moment, on that day (be it forums, news pages, gmail, twitter, blogs, whatever). And alternatively I can escape it all with the click of a button. Or at least, I can escape the flood of information, even if the haunting never quite fades (at least, not yet. I’m still very hopeful to move beyond the ghost of cancer’s past.)

I love Facing Cancer Together because of its tag line (and the pretty colours): “for everything else you’re going through with cancer.” So there’s the surgery, diagnosis, treatment and it’s literally all consuming – but alongside that is the fear, relationship strains, family obligations, that constant need to find a purpose in the madness . . . and then, that hope of looking forward. Relearning how to live post trauma. Not letting illness rule your everyday life. I love this website because while it’s a port in the storm, it’s also a place to start looking beyond cancer. Just check out the blogs. Both Sides is using art and poetry to work ahead, Terri is off chasing her big hairy dream, Katie is acting upon her advocacy dreams, Sherry inspires with her survivorship ,  Sandy’s giving tips for positive living, and Live is helping us to laugh.

So when life starts getting black, and the helplessness bubbles (and it does bubble, just look at the forums. People reach out, and they really need to communicate, even if it’s often under an alias – sharing helps the pressure release.) I know this is a place to come, relate, and leave uplifted. Whether it’s through a friend reaching out and leaving comments, or a new blog post, or a response from the Question of the Week.

I like knowing what to expect when arriving here.

But then throw me into a live mix of women and anything can happen. Today it was introductions and diving into our treatments. Next time will it be the same? Am I going to cry? Will we talk about the emotional trials? Maybe we’ll touch upon our non-cancer lives? I don’t know, and that freaks me out a little. But one thing is certain, while cancer is cancer I often find it helps to just talk ‘about everything else’ as opposed to pounding hard on the life-threatening experience.

Mind you, that’s always the starting point, isn’t it? Talking about a cancer diagnosis is to patients what sniffing butts is to dogs. A starting point.

So what happens next?  I wonder.

Today at the MapleSoft Centre in Ottawa, I met four other young and lovely women who have lived through (are living through) cancer. My feelings are still mixed about attending a group, but that’s in regards to my own issues, and not theirs. Maybe I’m not a support-group kinda girl? I guess that would be okay too. But maybe I am? (I’m certainly a cup of tea at Starbucks kinda girl, which is almost  like a support group, but in my opinion possibly more fun due to funky decor and free pumpkin spice latte samples.) We’ll see. Sometimes these things need a chance to grow. Like my hair. Certainly it’s a great idea and fascinating to meet other women my own age, fighting through similar battles.  We will see.

P.S. The conference went really well. The nurses who attended seemed to enjoy the roller coaster analogy I used to describe getting treatment. Hmm, I sense another post topic for the future: Roller coaster riding and the patient experience. Get ready to raise your arms and scream.

Posted in cancer, cancer treatment, finding support, healing, life after cancer | Tagged , | 1 Comment

Honesty for those offering palliative care

19 Oct

Have you ever heard of palliative care?  Maybe the word has been tossed around in the background, or perhaps its realities have been shoved in your face. Me – I’ve heard of it before, and actually benefited from palliative care during the several months of chemotherapy, but here’s the trick: I didn’t know it was *palliative. I just thought the nurses and doctors were being helpful.

But then fast forward in time. (Go, like, a year or so, which means spring twirls, summer passes, winter descends, spring thaws, summer revisits, and autumn plants its feet firmly on the ground – a little annoyed I skipped it the first time around.)  Hmmm.

Okay, let’s start that again. Fast forward in time to one month ago after the publication of my Glow Magazine article (this past September). I was contacted by a Karen (I’m starting to think Karens are good luck – each time I meet one, they’ve got opportunity in their hands).  Karen was organizing a conference for palliative carers, and she thought my story in that article would resonate really well with her crowd.

And so – because she was so kind, charming and I liked her immediately, and because I thought, ‘why not, Catherine, you can do this.’ – I agreed to be a guest speaker at her next conference.

Which takes us here, to this week. Today. I’m giving a talk at 9.30 am (Oh so early) and it’s going to be brilliant.

Do you want to know why? And believe me, it’s not because of my awesome-once-a-debater-haven’t-spoken-before-a-crowd-in-ten-year skills. Oh no, sir.

It’s because I get to be honest. Finally. Because during treatment there was no way, no how, I could truly display my feelings toward those who provided palliative care. The nurse who missed my vein: grumble. The other nurse who administered my first AC chemo: the sight of him made me want to vomit for a really long time. The doctors: They sentenced me to that year of bullsh*it.

Or at least, so it felt during my very darkest times.

No way could I share those emotions. Firstly, they weren’t fair.  Secondly, they were mine alone – the only person I really told about this was my husband. Sure, I love to be honest in Bumpyboobs, but there are some dark spots that were never discussed. You probably know what they are. If you’ve been there, you know. They don’t need publication. And thirdly, between the drug drips, the blood tests, the consultations and the scans, there simply wasn’t time to discuss.  (Except for once. My GP called me on my mobile one day shortly after my diagnosis. She said she felt totally shocked and never expected it to be cancer (that made two of us), and asked, why don’t we talk about this? Conveniently I was cruising by her office on the bus at that time, so hopped off to have a person-to-person chat. It was lovely, and I won’t forget her kindness.)

But I owe a debt of gratitude to those who carried me through the surgery, chemo, radio  and beyond. And this presentation has given me cause to reflect upon the ‘patient experience’, and what that truly means. From the very start with diagnosis, to that moment cancer sinks in, and finally when the clouds clear, the hospital no longer seems so punishing, and all the nurses have achieved saint-like status.

I get to be honest with a group of people with whom I never felt close enough to share that reality. That was my mistake at the time. But today, it will be my release. And I hope, since this is a conference, they find it insightful.

*Palliative care as defined by the World Health Organization: …an approach which improves the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment and treatment of pain and other physical, psychosocial and spiritual problems.

Posted in cancer, cancer treatment, chemotherapy, finding support, healing | Tagged , | 2 Comments

Narrative Nipple goes, “Woohoooo!”

12 Oct

Okay! Today is exciting because today is the day that launches a new website called Narrative Nipple. (Whooohoooo! Yeah, Baby!) What’s Narrative Nipple? Are nipples suddenly talking? Well – if you’ve ever had a breast cancer scare or worse, you know there’s a story to tell and, yes, it boils down to breasts. Nipples included. :)

The idea hit me several months ago while I was taking a shower and getting pummel by life: appointments, work, treatment, hair loss, picc line, drugs, recovery . . . you know how these things circle like a storm through the brain and just wreak havoc on your sanity? Well, I was showering and trying to keep my picc line dry, digesting all these thoughts and trying to imagine what I would draw for my next blog post, when I was hit with this idea: wouldn’t it be great if there were an online creative/literary forum for all this kind of stuff?

Yes Catherine, yes it would be great.

Blogs are full of life writing. That’s writing from life, real-world stuff and often from a personal perspective. But you know what I think was missing (though not anymore) a place for the community to get creative, get descriptive, get grungy, get poetic, get inspired, get support, and see their story represented through others.

Then I thought back to being first diagnosed. The  absolute shock and total confusion. While I couldn’t handle reading about surgeries and statistics, I was desperate to learn about the experiences of others. Forums were overwhelming initially (not any more) and informative websites were terrifying. I think having a page like Narrative Nipple, which is more like a gallery of highs and lows, might have helped in digesting of my new journey.

But enough of my talking. This project is here and being launched into the atmosphere. Unlike a blog, Narrative Nipple is not about the ‘me’, instead she’s all about you. You, and you, and you, and yes, even you over there in that office chair, hiding behind that monitor. She’s a site that’s collectively built and grown. She tells our stories.

Welcome to Narrative Nipple: please go read her over, click the buttons, leave a comment, pass it onto friends, and, if you’ve got the guts, submit your own work too.

www.narrativenipple.com

Wohoooo!

Posted in breast cancer, cancer treatment, finding support, healing | Tagged | 3 Comments

Being wonderful with each other

5 Oct

“This is your time. This time we are for you.” Last year around October, that was my French Canadian grandmother of ninety-one years, Lulu, cheering me onward as we spoke over skype (as I tried to look ‘healthy’ with my bald head and worn out expression, since no one wants to look sick in front of their grandmother). She sent her support, like everyone else – and I was so incredibly thankful. ‘People are at their best during the worst’, I heard that the other day on Lost (I think), and during my worst, people were truly incredible.

And last year I thought to myself while pre-made food arrived, as friends visited, when family called from across the ocean and coached me via skype, I thought to myself, “once I’m all better, I’ve got to give back.”

The number of ways to ‘give back’ are endless, from blogging to volunteering to donating to running marathons. . . possibilities stretch before a thankful survivor who needs to honour the goodness they’ve experienced. But I hadn’t imagined giving back would start so close to home, so close in the family.

This week Zsolt and I are thick in the woods of the Mount Tremblant area, hanging out at my aunt’s cottage and keeping her and my grandmother company. Now, one year later, this is Lulu’s time, and this time we are for her. While I haven’t written a single word of fiction (or fact, apart from this blog) during this mountain retreat, I have cooked some lovely meals, watched my husband stoke the fire, enjoyed driving tours with my aunt, played rummy with family, listened to my grandmother’s memories of her parents (and her parent’s parents, and her aunt, who was a nun) . . . and I am reminded that sometimes the best way to help another person is simply to be available.

Being here. Cooking food. Listening to stories. Going for a latte.

Last year those were the little things that made an incredible difference in my fight, and this year – though the circumstances are completely different (though the exhaustion isn’t, I can imagine) – these are the same things that helps everyone smile. And when we’re smiling, all else moves aside like sunshine through clouds. A generous reminder that life can be wonderful, and we can be wonderful to one another.

Psst! Check out my personal page (www.bumpyboobs.com) – full of conversations, stories, and breast cancer ass kicking. Also, tweet with me on twitter (@bumpyboobs) and check out facebook too.

Posted in cancer treatment, chemotherapy, finding support, healing, life after cancer | Tagged | 2 Comments