Joining the Cancer Club
It didn't take me long to realise that in order to better understand my diagnosis and the journey ahead, I needed to connect with people who were living with it.
So I reached out into the universe to hold hands with people all across the world who could encourage me with their story.
I was finding this cancer curious, because the response to it is not to treat but to watch & wait and that was not something I had any understanding of. (my mum, mother-in-law & friends have all survived cancer and watch & wait was not in their treatment plans). I needed to understand what that looked like on the ground, where the rubber meets the road.
Before we go into what I discovered, let me back up a bit to something I learned long ago when asking for information...
Half empty/ Half full
People can be so quick to share bad news stories, negative facts, worst case scenarios. It's an inherent bias we live by for some reason. You only have to pick up any kind of news media - its all angled to alert and alarm. Gets readers right?
I noticed this really tangibly when I decided to have a home birth during my first pregnancy. My very good friend delivered three beautiful boys at home and she encouraged me to trust my body, trust the process. I was so inspired and excited, that is until I started telling other people my choice. Whoa! Man did everyone want to fill me in with the risks, the mishaps, the horror stories! I had to get really good a boundaries and asking people to keep their personal opinions and stories for someone else who might be interested in entertaining nightmares.
Since then I've worked in community development in the Pacific and dedicated an entire programme to reframing how we define what we have in our communities based on the analogy of a half empty or a half full cup... it is a matter of perspective, it's a matter of choice and of focus.
We all have a cup and it's both half full and half empty. What gets our attention directly impacts what we're building. It's hard to build a vibrant community when all one sees is lack and problems. Success is far more likely when we celebrate the abundance, strengths and resources found within.
This is a value and perspective I try to carry into every area of my life.
Seeking Stories of Hope
So with that in mind, let's get back to my story about reaching out to the world wide community of people living with my curious type of cancer:
I was aware that how I framed my introduction would very much determine the kind of responses I would receive. I was also very aware that the information I asked for would be the building blocks that I invite to frame my life from here forward. Did I want the dismal, sad and despairing stories (because if I look, I'm sure to find them), or was I seeking stories that would bring me and my family hope? Give us a solid foundation to build from.
Taking a deep breath, I jumped in, joining a couple of Facebook groups. "Surviving and Thriving with CLL" seemed like a positive place to start and also one for people my age sharing this diagnosis.
My first post read: "Really keen to hear from people that have lived with this for many many years! I wanna be there for my boys into their adulthood and want to build a knowledge foundation of CLL on stories of hope. Love to hear from you!"
Hope from faraway friends
The feedback I received felt like a blanket of comfort was wrapped around my shoulders and the sweet scent from a cup of hot chocolate and marshmallows filled my senses.
So many beautiful people shared their stories of hope - which is what my family and I needed most:
I was diagnosed in 2013, and 10 years on, I haven’t needed treatment yet.
I was diagnosed on my 40th bday. Had 6 months of treatment. I’ve been in remission for over 7 years now.
18 years. I just live my life.
If it gives you any relief I have been on watch and wait since 2010 and am now 63
I've had CLL for 13 years, diagnosed in my 30s. So far, I have not needed any interventions.
I've been W&W for about 12 years.
I was diagnosed at age 37 and my sons were around 10 and 8 at the time. I am now 48 and in full remission.
I was diagnosed 10 years ago, had treatment and am living a full active life.
Diagnosed a couple months shy of 43, still in W & W at age 54.
Please have hope. I was diagnosed 23 years ago at stage 1 and had symptoms when I was younger than you.
I was diagnosed at 30 while pregnant with my third child who will be 20 tomorrow!
And like a loving family who just want everyone to feel safe, others shared advice and encouragement:
We've learnt you can still have a good life
Just relax, and live life as normal, there are a lot of us on W&W for years.
I hope you stay in watch and wait for many years like me or have those long remission after treatment like above.
Ask lots of questions of your doctor. See a CLL specialist.
Try not to worry, there are lots and lots of reasons not to!! Hang in there and feel free to reach out any time.
Stay positive, be brave and ask lots of questions. Each journey is different with CLL, but we make it!
I read out each comment to Anton and the boys and felt our spirits lift as we sailed on the stories of others. This is not a club I'd choose to join, but the warm welcome was tangible and appreciated.
Courage, Love and Legacy.
Usually online group networks scare me: so many people just rant and rave and throw negative, hurtful punches all over the place. But on the CLL networks I have joined (see about CLL page for a list), I have found people to be kind, caring and courteous. Everyone is there to help. There you will find a network willing to encourage, love and inspire you on the journey. We need connection, hope and understanding and it's uplifting to find others who are on a similar journey and can appreciate our highs and our lows. It is a big extended family of people - not linked by biological blood, but blood brothers & sisters all the same. And it's beautiful.
If you need a cup of hope (or hot chocolate) today as you absorb a cancer diagnosis, I'd encourage you to reach out to and connect with others and ask them to support and uplift you. And feel free to ask for a bit of love in the comment section below.