Not a nice girl

So Taylor Swift is not a nice girl anymore. She’s all snake-like and evil-eyed and jealous and untrustworthy and has a horrible reputation. She’s trashing all her boyfs and all her BFFs and herself.
I’m no Taylor Swift, but I do feel I’m moving from being nice and compliant to nasty and angry.
We have a slide in the OurBrainBank presentation. It has three statistics on it. Eighteen thousand people are diagnosed with glioblastoma (GBM) in the US each year. That means it’s rare. Five percent are alive after five years. That means it’s deadly. Only 5% of applications for research funding into GBM are successful. That means we’re failing.
Not just failing people like me.
But people like you.
Because everyone is affected by cancer.  One in two of us will experience some form of the disease in our lifetime.
Not only is 5% unacceptable, it’s stupid. If we crack the hardest cancers, then the others are a breeze. Yet the converse is what we currently do.
GRRRRRRR
Here’s what I’m cross about. I have a great idea – OurBrainBank – and it’s taking too long to get off the ground. I’m not clever enough to move it fast enough. I’m not on it enough to get the money we need to employ the fabulous person out there to drive it. I don’t want to think about GBM 24/7. And yet I can’t not.
I’m frustrated because my normal default setting of being a passionate persuader hasn’t kicked in as expected. Maybe it’s because the personal stakes are too high. Maybe it’s because some hidden depth of my psyche acts as a health warning, keeping me from obsessing about it all day long.
One thing I’m not is Taylor Swift. She’s out there with a video blaming everyone and everything. I’m at home scratching my itchy head, driven mad by frustration and all my manifold deficits.
Oh for clarity!
My lens was clear and focused just over a month ago. I was celebrating Alicia’s birthday with a group of friends, sipping cold drinks outside as the sun went down over the Hudson. My phone buzzed with a news alert. Senator McCain diagnosed with brain cancer.
I knew it was GBM. As we uber’d it home I emailed my mate Matt on the NYT OpEd team. How about the patient perspective on this? Yes please he said the next morning. And the morning after that it appeared.
Ed has always said that writing is much easier when you know what you want to say. In this case, I did, and it all happened deliciously quickly and successfully.
But being clear about getting OurBrainBank off the ground? I had the idea over a year ago, and we still haven’t been registered as a 501c3. Why is it taking me so long? And why has this blog taken me so long, when the process has been so helpful to me every single time I’ve written previously. I mean, you are my virtual therapy team!
Why haven’t I written since my MRI last week? Because it confused me, I guess, in a way that good news shouldn’t. I’m doing well. Yet again the cavity left from the surgery has shrunk a little. The images only do so much for me. Dr Iwamoto’s smile is all I need to see. Esther, the world’s best Nurse Practitioner, sends me the report from the radiologist. Lots of gobbledygook ending in the last line which I’ve read and reread and reread: ‘No evidence of tumor progression’.
And yet I’m unsettled.
Maybe it’s because I’ve been away for a whole month. I pleaded with Dr Iwamoto to liberate me from the twice-weekly infusions at Columbia (over an hour away door to door). He and Esther moved mountains to work out a treatment schedule that would allow me to indulge in time with the familiar – Heir Island, my geographical soul mate, and the new (to me, duh!) Greece, from the Acropolis to the island of Kea, with dollops of London in between.
I slept, sunbathed, walked, sailed, swam, read, and spent hours with my family and very close friends.
Still unsettled.
If I’m not the passionate persuader of old at the moment, what and who am I? Angry angry angry.
What I want to be is positive and determined and gutsy and smart. Above all, effective.
I worked with Gehl Architects for a while. Jan Gehl was the pioneering architect who articulated so clearly that it’s the space between buildings that are as important to design as the buildings themselves. Jeff Risom, my client, had a great way to describe the firm’s approach. He called them ‘idealistically pragmatic’. I love that. I want to embody it.
Fishburn Hedges, the corporate PR firm I landed in after starting my career in crusading charities like the Refugee Council and Shelter, used a client’s description to brand itself: ‘a strange combination of the sensible and creative’. Yes please!
The day after the launch of the Sheila McKechnie Awards, a scheme set up by the Sheila McKechnie Foundation which I chaired, having worked for this extraordinary and wonderful woman when she was director of Shelter, I received an email from Dame Julia Cleverdon. She congratulated me on getting the Award scheme off the ground, just one year after we set up the Foundation with a zero budget. Julia described the event as the right combination of ambition and FDI. I read and reread and reread that also.
These play out in my poor beleaguered head as I seek a way to articulate how I’m feeling. Why I’m not idealistically pragmatic or sensible and creative or visionary and yet on it. And all I can come up with is unsettled.
And angry.
Enough with the reasonable patient. Enough with complying with crazy diets and exercise and pill popping and and and…
Enough with the being grateful at the fabulous treatment I’m getting.
Enough with the gosh, how well I’m doing and beating the odds.
I WANT TO LIVE A LONG AND HEALTHY LIFE.
I DON’T WANT TO WRITE ABOUT 5%.
Quite soon after I was diagnosed we went to the movies with friends. Jenn and Holly – you’ll remember that truly dire The Witch, which promised much and delivered little? As the film started, Jenn whispered “I’m scared!” to which I replied with a speed that betrayed this was instinctive: “I’m not scared of my brain cancer, so how can you be scared of this movie?”
I meant it.
I’m not scared of TEF. I’m angry at how dare it even think about getting inside my head.
I’M ANGRY.
I’ve got to. Delete. Restart. I’m going to get over this feeling of being unsettled. I’m going to keep the anger and morph it into fuel. And I’m going to up the ante.
Watch out for the launch of OurBrainBank. Join me in spreading the word. Do it for you, for me, for all of us. Because it’s about saving and valuing and extending and preserving and… above all…. Living life.
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4 thoughts on “Not a nice girl

  1. I was talking with a fellow Glioblastoma warrior yesterday when he mentioned “This disease is really aggressive and I fight it aggressively too”. That reminded me of a similar statement from your NY Times Op-Ed about McCain’s cancer. I started wondering how you are doing now, and got a bit worried after seeing your twitter feed inactive for over a month. Very glad to see this blogpost from yesterday. 🙂

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  2. Thank you for (tacitly) reminding me that though our experiences are unique–and certainly more unique to our circumstances than the general population understands, we do share common features with others in our intimate glioblastoma community. My most recent radiology report concluded, “there is no convincing evidence of tumor progression.” No “convincing evidence”? I wondered. Hence, there is evidence, but it is not convincing? Thank you for reminding me that, one, I am not alone, and two, we are better for writing what we know, and with that spirit I’ll endeavor to spend time this morning on what I know best; what I want to say. Cheers, A.

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  3. Definitely not alone. I loved your last blog. Found myself nodding as I was reading! I thought I’d left a note on your page, but my IT incompetence knows no bound. Honestly, ‘no convincing evidence’?? I’m not sure what’s most startling: the low literacy level of the writer who no doubt spent years being educated, or the lack of empathy. What is one to do with such a statement other than blog! Beggars belief! All best – J

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