Message from Jessica: Mr Frankl comes to the rescue

10/22/2017 at 1:06pm
I stole my mother’s Deux Chevaux when I was 17, the day I passed my driving test. Not literally, but effectively. I took to driving as I did to smoking: like a duck to water, so to speak. So strong was my love of driving I even forfeited lagers at the Rose & Crown, the hangout pub (‘Rose & Pose we called it) aka home for me during my teenage years.
My pleasure at being behind the wheel, coupled with decades of driving at English speeds, meant it was just a matter of time I’d get in trouble driving over here.
Ed and I were heading upstate, me at the wheel, gliding along. Him telling me to slow down as per usual – yada-yada-yada – and me ignoring him, also as per usual.
Just as in the movies, the police car lights up, blasts out, and I pull over. An extremely tall man with a fancy hat and sunglasses strolls over. He asks for my ID. The problem was that not only did I have no ID, I had no US driving license, no UK one. Nothing.
Uh oh.
My strategy was to up the English accent, and take a long long time pretending to slowly search for fictional/ID, all the way expressing apologies in the way that only English people can.
Eventually he asked me to get back in the car, telling me that he’d let me go, but that I really might want to consider getting some form of ID and a driving license before my next trip.
My ability to act, spin, manipulate, whatever, had got me out of a potentially tricky situation. The art of persuasion is of course at the heart of my profession, PR. At the time of this event I was recruiting, so I did wonder if I could simulate this situation for potential candidates, to test their ability to convince people to do other than they might….
There’s a much more serious point here, relating to living and surviving a Grade 4 cancer diagnosis.
I was reminded of this when I started reading the phenomenal ‘Man’s Search for Meaning’ by Viktor E. Frankl. You’ve probably all read this. If not, I suggest you do. It is the most enlightening prose. Frankl was a psychiatrist who survived Auschwitz. His book offers extraordinary insights into why some people had a life after the camp, while so many perished.
Early on in the book, he talks about how he was able to forge a relationship with his ‘Capo’. These were SS appointed prisoners who headed up labor squads. They kept their privileged positions by terrorizing subordinate prisoners. Frankl was able to get into his Capo’s good books by using his personality – particularly his innate empathy – and psychiatric knowledge to advise the Capo’s struggles with his romantic life.  He adjusted his manner to appeal to his foe’s better instincts. As a result, the Capo kept Frankl close to him, and ensured he had preferential treatment. He valued Frankl’s advice, so it was in his interests he stay alive. This meant Frankl got a myriad of tiny advantages: a morsel more food, a slightly better task – individually not significant but collectively making a huge difference in his chances of survival.
In sharing these two tales, I am in no way attempting to equate them.  I’m also not of the view that surviving a concentration camp or a serious cancer diagnosis is down to personality. What I am observing is how my particular personality can be put to best use in the face of the challenge I face. Whereas I had thought that the weeble was incapable of falling over, and that indeed it was in my control, I have found the last few months the control slipping, and the weeble failing to upright itself as quickly or as easily as in the months following my diagnosis.
I’m glad to report the wobbling weeble has regained its balance and stands straight and still.
Mr Frankl has a lot to do with that. As does the psychiatrist I’ve started to see – Dr Marina Benaur – who brought the book to my attention.
I was becoming increasingly anxious. Nighttime trips to the bathroom stretched as I found it hard to get back to sleep, the GBM horror preventing me relaxing. Face book GBM groups enticed me in, only for me to come away often feeling aghast at the tales of carers who have just lost loved ones, often just weeks or a few months after being diagnosed. And frustration at the complexity of getting OurBrainBank off the ground making me feel out of control.
Maybe it was psychosomatic, or maybe just the cumulative impact of being on chemo and immunotherapy for a year and a half. But I started to itch. And itch. And itch. A corner of one of the arrays I wear on my head would come lose. An itch the equivalent of a squad of mosquitoes would emerge, proving irresistible to my index finger. I’d sneak in a scratch; enjoy a delicious moment of satisfaction, swiftly followed by pain. And then the itch grew to cover my body. I’d have a shower and find myself using the towel so harshly that my skin went red. Small sores grew into open wounds.
I was referred to Dr Lacouture at Memorial Sloane Kettering, a senior dermatologist who’s been seeing a number Optune users with sore scalps. Novocure, the company that makes the device, tried new barrier creams. Despite all these efforts, my skin became increasingly painful. And new treatments or the cumulative impact of 20 months on chemo and immunotherapy caused me to wake up to a body covered in red hives. I found it hard to think about anything other than the itching and the sores and the hives. It got so bad I couldn’t even take the arrays off without moaning.
The upshot is that I’m taking time off the device, using creams and fresh air to heal the wounds. While it feels liberating not to wear the arrays and carry a bunch of wires and a bag round with me, it also worries me. Optune is the only treatment other than the chemotherapy I take, that’s proven to extend life. So I want it back on as soon as my head is healed.
Nevertheless, I feel good.  The best medicine of all is a good MRI. Just short of a week ago I ventured into the bowels of Columbia yet again. I emerged triumphant just a few hours later. “No evidence of disease progression” and that fabulously reassuring, trusted smile from Dr Iwamoto.
But I’m still confused.
I seem to be surrounded by spectrums and contrasts, my mind and mood ricocheting from the substantive to the superficial. Did I really seek to relate my ability to avoid a speeding fine with Mr Frankl’s successful dodge from the gas chamber?
I must be mad. No need to respond to that statement.
Here’s another spectrum. I began the summer by penning an OpEd for the NYT, and ended it by appearing on the Dr Oz show. For my British friends, Dr Oz used to appear on Oprah Winfrey’s show, pitched as a medical expert who could connect with the masses, and one who was open to alternative treatments, as well as traditional Western medicine. Many are skeptical of him, just as many support him.
Dr Oz planned a feature about GBM, centered on an interview with Maria Menounos, who has been quite public about her recent surgery to remove a benign brain tumor. Maria’s mother has GBM, so Maria asked the producers to invite people with GBM to the taping of the show.  The producers wanted to convey a message of hope, and hence I was invited to be in the audience and say something hopeful. This I duly did: Dr Oz .
People with GBM and their carers are very active online. Their reactions were at different ends of a GBM spectrum. Patients cheered me on for the message of hope. Carers were polite yet clearly critical that the picture of GBM that emerged was overly positive. Many have lost loved ones just a few months after being diagnosed.
I realized that I had been insensitive to their feelings.
The core of OurBrainBank is really about shifting the axis of cancer treatment from the lab to the patient. So my mind is concentrated on what patients think, feel, express, want. In my desire to be upbeat, I risked conveying a lack of sensitivity, both for people living with GBM and having a much harder time of it than I, as well as those close to them.
I do believe that one’s attitude to disease is important, even if it simply helps one stay sane(ish) in the face of a horrible disease.
Maria Menounos quotes Rocky Balboa, perfectly articulated by Sylvester Stallone: “Life’s not about how hard of a hit you can give… it’s about how many you can take, and still keep moving forward.”
If GBM is my life challenge, then OurBrainBank is a determined effort to turn challenge into opportunity. From negative to positive. From death to life. To persuade all of you, and all of me, that we can turn this monster disease around and, in so doing, make major impacts on all cancers. I’m going to end here now because otherwise I’ll start ranting on and on about how fabulous OurBrainBank is, and risk alienating y’all.
Maybe next time. Because by the next time I post we will most likely be up and running. Oh yeah…. It’s happening! We have a website, we have some initial funding, and we have a passionate group of brilliant minds.
This is going to fly. And I’m going to stay strong.
X
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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.

It’s taboo…

Our eyes met across the crowded room. At first a quick glance. Then another. Soon a stare and a nod. When the others stopped talking, he sought me out and asked if he could give me a hug.
Taboo of the Black Eyed Peas, Native American, covered in taboo tattoos, and survivor of testicular cancer, was on the panel for the launch of the Biden Cancer Initiative this week.
A friend of a friend used to work at the Cancer Moonshot, Obama’s creation with Biden at the helm. Anyway, said friend of a friend wangled me an invite to the launch of Biden’s initiative.
So I’m sitting in a fancy room with around 40 people in suits. Medical experts, pharma giants, goliath cancer NGOs.
They’re all wearing suits. I’m wearing my Optune electronic helmet.
I knew that headgear had uses other than fighting TEF.
Taboo could see it. After the proceedings, we made a beeline for each other and he asked for a hug. That I can do.
But there was another guy in the room I wanted to meet. I joined the line, hustled a little. Deep breath, be brave. “Hi Mr. Vice President, I’m Jessica and have what Beau had. I’m so sorry he didn’t make it.” Yup, that got me a hug from MR JOE!! I went on “I’m doing fine and involved in setting up OurBrainBank, a whole new approach to moving glioblastoma from terminal to treatable, powered by patients. It so chimes with what you’re saying is needed – collaboration, a sense of urgency – I’d love to share our thinking”. Now those twinkly eyes focus and widen. Yet another hug and then, with his arm round my shoulder, he beckons to Greg Simon, President of the Initiative. “Greg! We gotta hear more about this!”
Oh yeah baby! That was Monday. What a way to start a week.
It’s broken a logjam inside my poor beleaguered head. Because I’ve been speechless.
I’m 15 months in, had a great MRI a while back, and have run out of words.
Fifteen months means I’m passed the median point of survival. Not that that means much – all these facts and stats have little relationship to either the here and now, or to me and my particular body and TEF.
I’m not daft enough to fail to recognize bloody good news, but. What now? It’s much easier to write a book of gloom than one of joy, right? I mean, look at the Brontes. Or Dickens. Fiction favors sad endings. Sorry, no can do at the mo.
Away from fiction and back to reality, what this means is I’m just not sure how to feel now. I’ve passed the median point of survival. What’s the next goal? And how do I get there?
I think the answer to the first point is readjusting the thinking. If I cede any ground to TEF, it’s that it’s stolen the luxury and anxiety of dreaming ahead. Long–held fantasies of somehow magically making enough money to have a second home. Or of building a career of real impact that only longevity can provide. Writing my novel. Producing my movie. Singing my song. Making my mark.
There’s a sort of liberation that comes with eliminating long-term planning. Ed mentions this in Felix’s podcast, and I’ve been dwelling on it. He’s right in that not being able to look so easily into the far future helps to focus aspirations onto today. The here and now. The making best use of the nanosecond.
I get that and, for the most part, feel it.
But how do I answer what my goal should be, and how I achieve it? I think I’ve been struggling with this because at times I’m not sure what I feel. Physically and mentally OK. Sure, tired, but if you’d been on chemo, immunotherapy and electrotherapy for more than a year I reckon chances are you would too. It’s the amorphous psyche that I’m talking about.
Which is why I haven’t been writing to you. I don’t know what to say.
I have no problem in having opinions (plus ça change, I know). But it’s being sufficiently zen and open to enable compulsions to skip the line, expose themselves, and order me to work.
Monday’s launch helped me break through. I got to connect with two incredible guys – one a musician able to command the attention and authority of cool young people all over the world. The other… don’t get me started. Just imagine if he’d been on the ticket last year.
Anyway, I got home Monday evening punching the air with excitement and new-found confidence. And purpose! And now I’m able to write again…..and writing to you helps me unlock my emotions so I can get closer to how I’m feeling. And opens the gate to my compulsions.
Top of the list is OurBrainBank. I am a Natural Born Campaigner, and getting OurBrainBank off the ground is no longer a choice, or a hobby, but a need. As soon as I take a day off of it, I drift. When I’m back on, I feel alive.
We are going to move glioblastoma (GBM) from terminal to treatable, powered by patients.
PLU (people like us) will input how we’re feeling and what we’re doing with treatments every day – or more – using a beautifully simple mobile app, designed by the fabulous duo Bruce and Ben, of sexy start-up uMotif. All that valuable data will be analyzed by clever researchers at Columbia University and the Dana-Farber Cancer Institute, led by my doctor, Fabio Iwamoto, and his colleague Lakshmi Nayak.
Medics will benefit from new insights into what combinations of treatments work best. And they can go for the prize of developing the first Patient Reported Outcome in GBM.
Partners and funders will benefit by having a ready-made pool of patients to recruit for clinical trials, massively speeding up the whole process of progressing new treatments.
Most importantly, people like me with GBM will be able to manage our conditions. Every day I can see how I’m feeling and what I’m doing against yesterday, and the day before. If I increase my exercise while finding the fatigue impossible, I’ll know to take it easier. If I can no longer pass the cute balance test on the app, I’ll know it’s time to check in with the doc.  And I can graph this over time, so I can look at it with Dr Iwamoto and figure out what meds to adjust and so forth, when I next see him.
All of us have or will be affected by cancer, if we haven’t already been. During my lifetime extraordinary success has been achieved for many cancers. But not for the really tricky ones, like TEF. It’s time for a rethink, a redesign, and a renewal of, in VP Biden’s words, a sense of urgency.
By putting PLU at the center of our plans, we reckon we can do it. And by focusing on GBM, we can put into play another great design principle: universality. If you design a doorway to take the widest wheelchair, it’s the most effective route to making sure everyone can get through any door. It follows that if we focus on cracking one of the most complex, rare cancers around, it will be the most effective way to getting solutions for other cancers, everywhere.
We hear a lot about the complexity of cancer. Yet pretty much all go through the same treatments: Surgery, radiotherapy, chemotherapy, and now immunotherapy. Electrotherapy has great treatment potential.  But we need exponential progress. We need cures.
This calls for a fundamental redesign of how we look at cancer as a whole, not just at different pieces. I’m talking about gently taking the helm from the medics and making PLU the Captain. Designing treatments and monitoring cancers around PLU, not just via medical instruments like MRIs, or objective measures like tumor size, but from what it is actually like to live with a TEF in my head. We need to press the smart brain button on our heads to turn off the sick button that allowed TEF to worm its way inside, and kick it the hell out, locking the door to prevent return.
I believe that everything I need to stay alive lies inside my brain. I’m fighting to keep my healthy cells engaged in beating GBM for me, for all those dealt the GBM card, and for everyone affected by cancer.
A while back I wrote that having a diagnosis like mine is a license to be outrageously ambitious… I also wrote that I’m not thinking about yesterday, or tomorrow, but today. Getting into that crowded room and hugging a couple of ultra-cool guys was more than just a good feeling. It catapulted me back in touch with my own, super-strong compulsions. OurBrainBank is going to be amazing. As Taboo and his band mates would say: “I gotta feeling, that tonight’s gonna be a good night. Tonight’s gonna be a good, good night.”
OH YEAH!
X

Taking Care of Business

A 17 year old good looking guy walks into a recording studio. He explains he’s a singer. “What kind of singer?” he’s asked. “I don’t sound like nobody.”
What gave teenage Elvis the confidence to think he could make it as a singer, let alone one who was so unique and distinctive he defied categorization? Whatever it was, it helped propel him to become The King.  If I could find that chutzpah and bottle it then… well, then The Evil Fucker (TEF) would really be on the run.
I heard this tale when we visited Graceland last week. We were in Nashville and Memphis for Spring Break. We checked most of the boxes: Graceland, Stax and Sun Studios, the Lorraine Motel and National Civil Rights Museum.
I was struck by how so many musicians actively seek out different genres, wanting to understand and be inspired by differences, breathing new life into their art, constantly redefining their work.
And having a blast while doing so.
That’s what I’m trying to do with TEF. Grabbing as many treatments as I can, both medical and complementary, hoping that there may some truth in the simple adage of the more the better. Hoping also that one of oncology’s current buzzwords – synergistic treatments – comes good for me.
But there’s another ingredient behind successful musicianship that Tennessee reminded me of. I want to feel good… James Brown is not alone. What makes me feel good is doing something with the shit hand I’ve been dealt in order to stare it down, for me and anyone else dealt this card. That’s why I’m determined to get OurBrainBank off the ground.
We’ve had a couple of meetings with potential partners, and I’ve spoken to some people with seriously deep pockets and/or minds (we know you can never assume the two go hand in hand, right?).
Everyone loves the concept. We’re turning GBM (the acronym for my kind of brain cancer) from being considered terminal (ie no cure yet) to treatable, powered by patients.
Everyone loves the team.  My fabulous neuro-oncologist, Dr Fabio Iwamoto at Columbia University, Dr Lakshmi Nayak at the Dana-Farber Cancer Center in Boston, and Bruce Hellman, CEO of coolest start-up ever – umotif – and maker of the app. Oh, and moi.
But – and it’s an important but overcomable but – we haven’t yet demonstrated how the information we want to collect from patients via the app will enable us to make a giant leap in cracking brain cancer.  Whatever we ask patients to input has to make sense to them, so it’s worth their while to use the app, and not become yet another good but insufficiently compelling-idea.  So we’ve hit the pause button until we’ve cracked it we can get on with launching it.
I cannot wait.
The fug I’ve been feeling, which Elvis et al briefly lifted, persists.
This despite a great MRI a couple of weeks ago. The genetic makeup of my tumor means the chemotherapy I take is more likely to impact than otherwise might be the case. So I’m still taking it, a year since I started. The MRI showed further shrinkage of the cavity where the tumor was, which means the chemo is still doing its job. Given I’m OK with it (she says, stifling chemo-induced yawns) I’ll keep popping the pills for a while yet.
So MRI day was a very good day.
Why then the fug? I wrote last time about the longer I’m OK the more worried I am that I may be closer to the day I’m not OK. A sort of mid-life crisis massively concertinaed perhaps. I can react by getting all gloomy, or by hitting back. OurBrainBank helps me do that, so I’m finding the pause button hard to deal with. Once that’s lifted I will be so up for it. I feel a bit like those thoroughbreds champing at the bit, waiting for the gates to open.
Moi, thoroughbred? You ay scoff, but you know what I mean.
I want to get on with OurBrainBank because it’s good for me, it’s good for other patients, it’s good for anyone with cancer and that means it’ll be good for all of us. When I say it’s good for me, I don’t mean only because it has the potential to make a major contribution to sorting out brain cancer. I mean it will help satiate my need to feel I can still be ambitious. It is legitimate for me to strive to achieve, to make a mark, shift a needle or two, make some quantum leaps somewhere. I can’t bear the thought of TEF closing any doors to me. I can feel anger at that prospect coursing through my veins even as I type.
I’m a 53 year old woman with brain cancer and I want to feel like a 17 year old who can knock the socks off the competition with a totally new approach.
So at the moment I’m doing what Elvis famously talked about – TCB (Taking Care of Business) – in a flash. We’re not quite yet moving at lightening speed, but once we’re up and running you betcha I will.
X

Message from Jessica: Million Dollar Woman

I’m a million dollar woman. My surgery cost something like $130K. A year of immunotherapy infusions is $144K. Electrotherapy is $250K a year. Half way to a million and we haven’t even added in radiotherapy, chemotherapy, bi-monthly MRIs, and a bunch of supplements. Who said I was a cheap date?
I’m a Million Dollar Woman.
And a greedy one. I reckon I’m worth so much more. Back in the day, if I didn’t feel Ed was paying me enough attention, my oft articulated and somewhat wishful line was: ‘Don’t you realize that thousands would pay thousands to spend just one day with me?’. Wistful and downright dodgy. And useless. All it did was elicit a wry smile. He’s still here though, and we’re happy even without the thousands and thousands. Ha!
But feeling like a Million Dollars, staying well and fighting The Evil Fucker takes a currency far more complex than a big bunch of bucks. Oh my poor head. It’s not enough to be carved up by a surgeon, burnt by radiation, drugged by chemo and frizzed by electronic tumor treatment fields. It’s got to dodge all those bullets and deliver a positive mindset. Because what’s the point otherwise?
Here’s my recipe:
Set the oven to high
Mix together personal experience with knowledge garnered from the finest neuro-oncologists, technologists, brain cancer patients and care givers you can find
Sprinkle in more than a pinch of common sense
Flavor with large dollops of hope, belief and determination
Bake until a syringe comes out as clean as the MRI you want to see every time you enter that tunnel
Eat, enjoy, energize. And then ACT.
I’m feeding my appetite to prove my worth and triumph over TEF by developing OurBrainBank. A quick reminder: After decades of very little progress, cutting edge treatments for brain cancer are on the horizon. But none have yet harnessed the power of the very people most desperate to make a difference: patients. OurBrainBank does this by putting the patient at the center. We’re starting where patients are: online. We’re using what patients use: a beautifully simple app. We’re asking them to input what they’re doing to stay well – from diet to exercise to supplements – and how they’re feeling, including symptoms and side effects – language issues, balance problems, tiredness, nausea and so on. All that information will find its way onto the desktops of analysts at Columbia and Dana-Farber, two of the world’s leading neuro-oncology research centers. These clever clogs will pore over the data to spot what’s working best, what combinations of treatments are most effective, what insights we can gather from the reality of patients’ lives so we can improve guidance, connect patients to each other, build a community, enable patients to make better use of their meetings with their doctors, and provide a ready-made pool of candidates for recruitments to trials. And perhaps most importantly, provide insights and evidence into this patient population to unlock the serious big bucks we need to kick TEFs outtahere for everyone, forever.
If OurBrainBank is my big therapy, you’d think I was feeling swell. I mean I’m helping create something seriously special that could make a significant contribution to tackling one of the most complex and frustrating cancers around. It’s exciting and ambitious and all the things that get me going. And I think I’m doing fine physically. I haven’t had an MRI since I last wrote. Nor have I had any noticeable changes in how I feel physically. But I don’t feel psychologically that great. I think it’s because the longer I’m well, the nearer I get to a potential downturn. I’ve never been given a prognosis, and I understand that median statistics are just that, and in no way an indication of what may happen to me. Perhaps I fear not fearing TEF. Am I sufficiently prepared for the worst? Or is that a self destructive and pointless exercise? If things change, I will have more than five minutes to adjust. As a wise friend told me, instead of feeling that the longer I feel better, the nearer the moment I might not, I should feel that the longer I feel better; the longer I feel better. True dat. A few months after my diagnosis we went to see The Witch, a truly dreadful film. As the movie started my friend Jenn whispered that she was scared. Quick as a flash I responded: “I’m not afraid of my brain cancer, so how can you be scared of a crap movie?”. A flippant remark, but one I delivered without thinking because that’s how I then thought. I was clear headed and confident. Every night, those first few months, when I woke to go to the loo, I’d look at the chinks of light from my bedroom shutters and feel my belief and self knowledge that I was going to be OK.
I still feel that. But now I sometimes fear feeling it. A massively horrible, unfair thing happened to me and I rose to hit back. It’s like when I woke up in my freshman dorm room in college (or ‘first year university accommodation’ for my British readers) to find a guy stealing my camera. I was so shocked I jumped out of bed, wrapped a blanket round me (err yes, I was starkers) and chased that bastard down the corridor. I lost him, but he was eventually caught and I was able to buy a much better camera. I was shaken, but I wasn’t stirred.
The point is my reflexes are to fight back. That’s what I’m doing now, but it’s getting surprisingly harder and more complex a warpath the further along I go.
TEF is stirring me a little of late. I can see it in the way I’m not pushing myself to exercise as much as I was. In the way I’m indulging in sugary treats or the odd carb every now and then. The sin of over-eating has been the bane of my life. It took me far too long to figure out what was always staring me, literally, in the face. When I start to feel a bit wobbly, I eat. The difference now is that I understand the power of the confessional, and you, lucky reader, are my Pope. By opening up and hinting at my sins I can feel ablution washing through me.
Here’s another recipe. This one is for getting Back On Track:
Dress well.
Apply make up.
Tie head scarf.
Add appropriate ear-rings.
Walk Jazzy
Think.
Revise TO DO list and Get On With It.
MAKE OURBRAINBANK HAPPEN
I know I can. After writing this, I know I will.
I’m a Million Dollar Woman, after all.
Thank you, dear friends

Message from Jessica: It’s all about me

I bet if I took a straw poll, more than 80% of you would have had some sort of psychotherapy at some point. There’s typically a moment when you have to spill the beans, so to speak, of what’s really going on inside your psyche. To dig deeper, set aside what you think you know of you. And in doing so, the therapeutic value of lancing the boil is immediately proven. As you grimace at the check, you also acknowledge that you are different in some perhaps indecipherable way, to some uncertain degree, with indeterminate consequences.
Cancer got inside my head in a way no shrink of whatever hue could. 2016 was a year of shock, regularly fueled by intensive treatments. I completed six weeks of full-on brain radiotherapy. Nearly a year of chemotherapy. Same of immunotherapy and electrotherapy. I switched my diet to exclude all sugars – cancer’s food – bought the best pup ever and got to know every nook and cranny of Prospect Park. I guzzled a handful of supplements with breakfast and dinner daily. I stuck needles (good ones) in all sorts of places. I slept. And slept. We hosted a dizzying array of friends and family, dined off extraordinary feasts delivered by Brooklyn’s best. The flowers, the gifts (I still snuggle under a cashmere delight of such wonders no words can convey), the cards and the visits kept me up and away from the Danger of Depression.
2016 was dictated by TEF. Everything I did stemmed from it. It took center-stage in my life in a horribly dramatic way.
2017 sees me – the full me, not just the sick bit in the upstairs department – tentatively getting back into the driving seat. I’m looking at me and I am much more than a bunch of sick cells.
First, though, I needed to pack 2016 away. To do so, I wanted to look at the physical location where TEF first made its presence known. I wanted to pay homage to that moment, and to the instinctive and unfettered love and support shown by my friends who were there on a hillside in upstate New York where I collapsed a year ago. They kept me upright as I shook and frothed and rolled my eyes and god knows what else. They gently led me down the mountain top, guided me into a vehicle, using calm and loving tones, keeping my rising alarm at bay.
We returned to Beaverkill with the same friends a couple of weekends ago. With no set plan in place for Saturday morning, we found ourselves intuitively coming together for a hike to The Place. There we smiled, hugged, chatted, remembered. And replaced a traumatic, unspeakably horrible memory with one of collective friendship. With every step away from the site, I could feel my psyche healing, as if it had been looking for a critical stray piece of the puzzle of repair.
Now to 2017. One year and one week to the day later, I accompanied my brilliant neuro-oncologist Dr Fabio Iwamoto and Bruce Hellman, CEO of extraordinary UK start-up umotif, to present thoughts to a global team at the forefront of healthcare and technology, on how we can massively accelerate progress to a cure for my kind of brain cancer.
Here’s the thinking. What I have is very rare, and very aggressive. What’s the solution? Seriously large research money for new treatments. The challenge? Funders like to fund treatments which are likely to succeed. The safer the bet, the better. So we’re in a Catch 22: without evidence we can’t get funding, and without funding we can’t get the evidence.
I’d asked Dr Iwamoto what was needed to crack brain cancer, and I was pondering this funding gap. We had to find a way to get evidence.
Meanwhile, I was madly googling online for advice and ideas and support from fellow travelers. What I found was a traffic jam of facebook groups, blogs and message boards packed with patients and caregivers. The range of different advice offered by different doctors, and the huge spectrum of other treatments, from complimentary therapies to different diets, and so on and so on…..In other words, a vastly differing array of experiences documented solely online. The only common factor was the chasm between patients and doctors. Where doctors are understandably loathe to recommend anything that hasn’t been proven, patients like me are operating with a very different criteria, ie as long as it doesn’t harm me, the absence of a cure means ‘I’m up for it’. And whereas online patients are posting notes often more than once a day, their doctors only get to see them sporadically.
Wasn’t there a way of combining the two? Of documenting what patients are doing to treat their TEFs in a 360 degree way, from their perspective, at least once a day? Thereby providing a fuller picture and – critically – a mountain of as yet untapped data that can then be analyzed to understand what combination of treatment works best, building a more robust base of evidence and insight into the patient community that one hopes will give greater confidence to potential funders.
One other point. If you look at cancer as a whole, research funds tend to go to those cancers that afflict most people, and/or are easiest to treat. Seems to me this is a poor way to tackle the overall condition. I used to work with disabled people, and we’d seduce businesses into seeing disability as a business issue by arguing that if, for example, you design your buildings to fit the widest wheelchair, it’s the most efficient way to make sure the doorway works for everyone. Move to cancer – doesn’t it make sense to tackle the most complex, most aggressive and rarest one first? Wouldn’t that be the quickest and most efficient way to secure better treatments and outcomes for all those with cancer?
Bruce and Fabio are designing an app for people with my kind of brain cancer called ‘OurBrainBank’. It’s designed around the patient, not the app’s capabilities to collect data. We think we can make TEFs treatable much more quickly this way. And the whole enterprise is being powered by patients.
Oh yeah. More on this in future posts.
That was last week. This week was MRI time. The usual scanxiety kicked in a few days ahead of my 8am Tuesday appointment in the bowels of Columbia-New York Presbyterian. I am very lucky not to have to wait for the results. Soon as I’m back up to the 9th floor where neuro-oncology lives, Dr Iwamoto comes to see us and smiles. Ah, the relief. I cannot begin. He shows us the images. Pretty much unchanged from the last scan two months ago: the cavity vacated by TEF is tiny, and the lightened area hasn’t really shifted, confirming Iwamoto’s view that this is scarring left over from the radiotherapy. If it was suggestive of TEF it would have grown since the last scan.
I’m to continue with two more chemo cycles, taking me up to a full year. I’m a little anxious about stopping, as, presumably, it is impacting positively. But there’s no evidence it can impact after even 6 months, let alone a year, so there’s no strong case to continue. Equally, the toxicity of chemo means it can create problems in the future. (When the doctor started talking about long term problems I felt happy! I might have a long term!!). And the cumulative effect of the chemo is making my tiredness seriously boring.
I’m also to continue with the immunotherapy, a checkpoint inhibitor called opdivo/nivolumab, for a further year.
Meanwhile, labs the world over are feasting on cutting edge treatments to land the next big step in cracking brain cancer. It’s been years, at least a decade, since we had any major advancements. Cross everything we get a breakthrough soon.
So all of this is what I’m fixating on now. Not last year.
As I watch the most powerful person in the world conducting himself in the most bizarre fashion, feeding on the oxygen of publicity that must, surely, lead to political suicide at an as yet unknown moment, I turn the outside world off. I’ve kicked TEF out, both literally and psychologically. I hope for ever, but certainly for now.  I’m good – very good – for now. And that’s all any of us can know.
The Beaverkill walk helped seal the end of last year. A great day, topped off with a glass of champagne before dinner. As I took my first gulp, my friends morphed in front of my eyes into a flashmob, jettisoning me back to those ’80s student days and my love of dancin’. Go WHAM!! Chloe – I will always love you for this. I dare you to resist George and Andrew as I sign out for now and get back to focusing on me! RIP George. You and Andrew may not have been the most sophisticated lyricists, but you got me.
Wake me up before you go-go
Don’t leave me hanging on like a yo-yo
Wake me up before you go-go
I don’t want to miss it when you hit that high
Wake me up before you go-go
‘Cause I’m not planning on going solo
Wake me up before you go-go (ah)
Take me dancing tonight
I wanna hit that high (yeah, yeah, yeah, baby)
X

2016 Round-Robin

Message from Jessica: 2016 Round-Robin
In a few days I’ll be sitting on my dad’s loo, fingering his books on the little shelf he built, just the right height and size to fit a perfectly curated selection of reads for a morning toilette. I can recite by heart the titles of many of the long-standing scribes. A Murder of Quality by John le Carré, much better than any Night Managers. The Rose of Tibet by Lionel Davidson (although I’ve been meaning to ask dad to swop this for A Night in Wenceslas, a far superior effort in my view. Seems I spend so long reading I forget to ask). The 5BX exercise routine, devised for the Royal Canadian Air force in the ‘50s. And then a more recent addition: Simon Hoggart’s compilation of round-robin letters: The Cat That Could Open The Fridge: A Curmudgeon’s Guide To Christmas Round Robin Letters.
Here’s mine. Ed has had an excellent year, producing a steady stream of important articles on such light topics as the death penalty, racism, poverty, sexism and generally any subject where human beings in the world’s most powerful nation are treated extraordinarily badly. It’s like starting every day with a cold shower – good for you! Felix had a wildly exciting gap year, lifting India out of poverty single-handedly, before moving to London where he acted as Steve Jobs for internet start-up uMotif. Now he’s shining at the highly progressive Colorado College, nestled in Colorado Springs, home to a major military establishment as well as more Churches per capita than any other city in the US. That’s what I call diversity. Tess is fulfilling her mother’s desire that there be only one letter on her report card, as she embraces her senior high school year with unbridled optimism, filling out college applications expertly, speedily, and generally being an absolute joy.  It’s just the way she does anything I ask so immediately, without question, and with such a delightful smile on her face. The clothes that get picked up off the floor instantaneously, the refusal to wear any of my latest purchases, use my make up or wear my earrings. Emma also. Emma has joined Tess at the finest high school in the city (Beacon) and is already excelling at all aspects of the curriculum, including Friday night sleepovers at ours, which require Ed and I to don aprons and produce restaurant-worthy brunch offerings on Saturday mornings for scores of charming young women. Ah, the neatly made beds they leave behind them. They do all say thank you…. Perhaps the star of stars, however, is Jazzy, a wheaten terrier who arrived to brighten our lives, jumping sweetly over furniture to embrace us, showering us with dog kisses, while simultaneously chewing our most precious Alvar Aalto chairs and leaving indelible wee stains all over the taupe carpet. It’s not her fault that the wee stain doesn’t match the carpet, is it?
Back to the loo.
We are headed to an East Coast boutique hotel for Christmas, aka my parents’ house with the aforementioned loo. Stone House on Mersea Island is an oasis of calm, delivered through immaculate design, impeccable home cooking, constant hot water for proper baths, and really fluffy towels.
And a couple of the best human beings on this planet.
I want to pay tribute to my parents. This year they’ve had to grapple with the full spectrum from their children. At one end, my fantastically talented sister Frances shattered many a glass ceiling by becoming Director of Tate Modern. Richly deserved, and as her sister I’m allowed to say, a little overdue. Then my brother, navigating a change in family situation with care and patience, while renovating an extraordinary property on an impossibly beautiful spot in Devon. At the other end, my diagnosis.
Not many parents past their first flush of youth would get on the plane, come on over, cook and clean and garden and shower us with persistent and consistent strong and tender love.
And wow has it helped.
Last Friday I had my MRI. I was warned I wouldn’t be able to get the results until Tuesday this week, so had prepared myself for the wait. My usual ability to lie in the donut and focus on a James Bond red tunnel, with me coordinating the SAS zapping of TEF suspects, was hard to conjure up. I was so tired – the main side effect I get from ongoing chemo and schlepping up to Columbia New York Presbyterian from Brooklyn – and the gurney so comfy I almost nodded off. Even with the drilling pounding my ears.
But Dr Iwamoto isn’t any old doctor. He came and found me and gave me the headlines, and showed me the images. The cavity where my tumor was has shrunk yet further. He smiled. I smiled. Ed smiled. This was a bloody good result after a bloody awful year.
Back to the round-robin. Jessica began the year with an unexpected seizure, leading to the diagnosis of one of the most rare and aggressive of all cancers. She ended the year with no sign of it, nor of the 60+lbs she’s shed along the way, adopting the ketogenic diet, intermittent fasting, various supplements, and addictive daily dog walking around Prospect Park.
But more importantly, she and I have come to the end of the year knowing that we’ve achieved all this by drawing on reserves and replenishments of that most potent fuel. The one my parents have showered on me throughout my life, even when I’ve driven them nuts with bad behavior (so if teenagers never misbehave they’re just boring adults, right?!), working in a completely different field to them and my siblings, and – worst sin of all – by moving away. Despite all this, they’ve powered me with constant, unbridled, uninhibited and unconditional love.
So when people tell me how well they think I’m doing, as they often do, I wonder how I am able to. I’m actually, crazily, happy.  Because I have very firm foundations. I’ve been loved all my life and I’ve given love all my life. And I love life. So as we end this tumultuous year, I see 2017 as the year I can inch from the psychological emergency room I’ve been in since January, to a more public ward.  One where I can put to good use the knowledge and experience garnered this year.  You’ll just have to hang on for the next post to hear more. But I’ve got some bloody good plans he he. And they’re all powered by love.
As my school motto stated: Amor Vincit Omnia. Sitting here, having not had a single day’s illness all year, and still flush from my fab MRI result, I can say – you bet. Love does conquer all.
Thank you for reading. For supporting, for communicating, for giving, for loving.
To you all, from me – a very Merry Christmas and a Happy New Year.
X

Fits and Starts

I had a seizure in Prospect Park two weeks ago. And another in the ambulance on the way to hospital.

 

The medical community talks about ‘auras’: how people often sense a change in the air before they have a fit. I was feeling tired anyhow, and had forgotten to take my anti-seizure medication the night before. I’d doubled the dose in the morning to make it up. Then set off to walk across Prospect Park to have brunch with friends.

 

Still tired (but when am I not?), we started walking back, and it was when we hit the gorgeous boathouse that I began to feel those old teutonic plates shifting again.

 

And the words… a disconnect between what I wanted to say and the noises I uttered.

 

Ed was there and caught me, and our friends Steve and Ria sorted an ambulance. A passing doctor explained the importance of placing me on my side on the ground, ensuring I kept my airways clear.

 

I came to in the ambulance, outraged at the incompetence of the man trying to save my life.

 

Every two weeks I get Ivy League nurses at Columbia injecting me, so I know a good vein spotter when I see one. This guy hadn’t even completed first grade. But he was trying to save my life, so I could have been a little nicer. Ed said I was horrid. He also said I kept on trying to take my clothes off. Does unconsciousness expose innate and instinctive bad behavior? No need to answer.

 

Home that evening, lying in a hot bath, I could feel anxiety morphing into terror stealing along my veins. Why did I have these seizures? The cancer must have returned. The clock has shifted. The hourglass flipped. The smiley performed a 180-degree flip, TEF had hit a bracket key on my human keyboard of emotions.

 

My insurance policy of doom and despair kicked in, ahead of my MRI scheduled for the following week. Despite a CT scan done there and then, and which showed no evidence of recurrence, I knew with that dull certainty reserved for serious shit that the weeble (remember, I’m a 1970’s kids’ toy called a weeble, that famously ‘wobbles but doesn’t fall down’) was under threat. I had to manage my expectations, hence the insurance policy. If I assume the worse, anything better would be much better than better, sortathing.

 

This was all so different than the first time I had a seizure, back in January. This led to my diagnosis, delivered by the completely charming Dr Andrew Chi, head of neuro-oncology at NYU. It was a stunningly stark moment that I don’t expect to ever completely process. I do remember feeling shocked at the reality, but not completely surprised, nor even devastated. The previous weeks since my brain surgery had seen me stalking my surgeon via phone calls and emails, and he had taken his time to get back to me. When we finally spoke, he’d told me I had a glioma. I was sitting on our bed looking at the spot on the skirting board where Gerard didn’t paint sufficiently thoroughly, thinking: ‘there’s a false upbeat in the surgeon’s tone. He doesn’t want to tell me everything.’ So I’d mustered my thoughts and asked him if this meant I was a goner. The skirting board was banished as he uttered “Oh, you’re not going anywhere”. Yay! Onwards! “Where can I find out more about gliomas?” I ‘d asked. Ha! The naivety. “Don’t google. I’m referring you to Dr Chi, he’ll talk you through it.”

 

Google told me lots of horrible things. Curiously, the same horrid explanatory paragraph seemed to show up on every article associated with gliomas over many years. Plagiarism isn’t the sole preserve of one Melania Trump, it seems. So I could tell that it was bad news, but that I would need Chi to provide accuracy, detail and, hopefully, Hope.

 

Which he did. He gave me my diagnosis with very specific reasons to be cheerful. Size and location of tumor, good surgery and recovery, my age and overall health. Both in content and manner, the way he delivered my diagnosis was a model of excellence.

 

Straight afterwards, I nipped into the bathroom in NYU’s neuro-oncology unit. It’s surprisingly clean, with grouting between the tiles that seems only to have known bleach. It was in that room, looking into the mirror, that I was first able to process my diagnosis. And in that moment to know that I was fundamentally on my own, and that, equally fundamentally, up to the task ahead.

 

In our kitchen in Greenwich where I grew up, we had a huge white pin board where we displayed all sorts of pictures and photographs. Somewhere on there was a piece of wood with a quote from Churchill burnt into it: “Please understand there is no depression in this house, and we are not interested in the possibilities of defeat. They do not exist.”

 

This surfaced in my mind in the NYU bathroom. But nine months later in Prospect Park two weeks ago, I found it much harder to grab at. During the days following these seizures, TEF licked its lips as it invaded my every moment, both conscious and unconscious. Its tentacles wrapped themselves around all thoughts of work, of home, of family and friends.

 

I felt myself swaying in its power, its grip tightening with every nanosecond I tried to stop thinking about it. Like a mad, attention-seeking psychopath, ignoring it was not an option. My dietary discipline cracked. My exercise stalled. My concentration diminished. Tiredness and anxiety took over. I longed for my MRI to provide the clarity I needed, to triumph over the emotions and provide a clear way forward.

 

And then it was ten days later, and the day of my MRI.

 

8am in the bowels of Columbia on 168th St. Electronic headgear was off. Earrings removed. Wishbone necklace set aside.

 

I lay down on the gurney, the cushion place under my knees for comfort. I twiddled the foam earphones and relaxed as the headphones were placed over my head.

 

The instinctive claustrophobia I normally feel failed to make an appearance, so keen was I to know whether the seizures had led to recurrence or not. CT scans only go so far….

 

They handed me the panic button. Wasn’t Panic Room a good name for a movie? Why the same thoughts each time, I ask myself each time.

 

Then the mask goes over my head, and foam pads are inserted each side to inhibit movement. There’s a tiny mirror above me where I can see a bit of my forehead. Why? Note to self-moment: ask the technicians why that’s there. But it’s so trivial I never do. But I get a small sense of enjoyment with the familiarity of the question rearing its head.

 

Then I’m moved inside a donut. It’s not a coffin it’s not even like a coffin it’s designed to help me stay healthy yes it is it is is stay breathing be calm you had two home births for fuck’s sake.

 

Why is it so goddamn noisy, like a road works has invaded my head? Note to self each time, ask the techs. Note to self each time, don’t worry you know you’ll forget and you don’t need to know. Just behave and let them do their jobs. They want the best for me I’m so lucky.

 

Pause half way through. Inject me with contrast. Then pummel away again.

 

OK you’re done. They smile inscrutably as they help me off the gurney. What must it be like to know whether the person is doing well or not and yet not be able to say? What secrets that basement must hold.

 

And then….. Just a matter of less than half and hour and nine floors up the elevator, along the corridor and into the neuro-oncology department. Dr Iwamoto arrives and delivers the headline:

 

“It’s a good MRI and I’m really pleased with your progress”.

 

YES

 

X

Fits and Starts

I had a seizure in the Park two weeks ago. And another in the ambulance on the way to hospital.

 

The medical community talks about ‘auras’: how people often sense a change in the air before they have a fit. I was feeling tired anyhow, and had forgotten to take my anti-seizure medication the night before. I’d doubled the dose in the morning to make it up. Then set off to walk across Prospect Park to have brunch with friends.

 

Still tired (but when am I not?), we started walking back, and it was when we hit the gorgeous boathouse that I began to feel those old Teutonic plates shifting again.

 

And the words… a disconnect between what I wanted to say and the noises I uttered.

 

Ed was there and caught me, and our friends Steve and Ria sorted an ambulance. A passing doctor explained the importance of placing me on my side on the ground, ensuring I kept my airways clear.

 

I came to in the ambulance, outraged at the incompetence of the man trying to save my life.

 

Every two weeks I get Ivy League nurses at Columbia injecting me, so I know a good vein spotter when I see one. This guy hadn’t even completed first grade. But he was trying to save my life, so I could have been a little nicer. Ed said I was horrid. He also said I kept on trying to take my clothes off. Does sub consciousness expose innate and instinctive bad behavior? No need to answer.

 

Home that evening, lying in a hot bath, I could feel anxiety morphing into terror stealing along my veins. Why did I have these seizures? The cancer must have returned. The clock has shifted. The hourglass flipped. The smiley performed a 180-degree flip a bracket key.

 

My insurance policy of doom and despair kicked in, ahead of my MRI scheduled for the following week. Despite a CT scan done there and then, and which showed no evidence of recurrence, I knew with that dull certainty reserved for serious shit that the weeble was under threat. I had to manage my expectations.

 

When I was first given my diagnosis, delivered by the completely charming Dr Andrew Chi, head of neuro-oncology at NYU, I wasn’t completely surprised, nor even devastated. The previous weeks had seen me stalking my surgeon via phone calls and emails, and he had taken his time to get back to me. When we finally spoke, he’d told me I had a glioma. I was sitting on our bed looking at the spot on the skirting board where Gerard didn’t paint sufficiently thoroughly, thinking: ‘there’s a false upbeat in the surgeon’s tone. He doesn’t want to tell me everything.’ So I’d mustered my thoughts and asked him if this meant I was a goner. The skirting board was banished as he uttered “Oh, you’re not going anywhere”. “Where can I find out more about glioma’s?” I ‘d asked. Ha! The naivety. “Don’t google. I’m referring you to Dr Chi, he’ll talk you through it.”

 

Google told me lots of horrible things. Curiously, the same horrid paragraph seemed to show up on every article associated with gliomas over many years. Plagiarism isn’t the sole preserve of one Melania Trump, it seems. So I could tell that it was bad news, but that I would need Chi to provide accuracy, detail and…. Hope.

 

Which he did. He gave me my diagnosis with very specific reasons to be cheerful. Size and location of tumor, good surgery and recovery, my age and overall health. Both in content and manner. The way he delivered my diagnosis was a model of excellence.

 

The bathroom in NYU’s neuro-oncology unit is surprisingly clean, with grouting between the tiles that seems only to have known bleach. It was in that room, looking into the mirror, that I was first able to process my diagnosis. And in that moment know that I was fundamentally on my own, and that, equally fundamentally, up to the task ahead.

 

In our kitchen in Greenwich where I grew up, we had a huge white pin board where we displayed all sorts of pictures and photographs. Somewhere on there was a piece of wood with a quote from Churchill burnt into it: “Please understand there is no depression in this house, and we are not interested in the possibilities of defeat. They do not exist.”

 

This surfaced in my mind in the NYU bathroom. But I found it much harder to grab at it in the Park. During the following week, TEF licked its lips as it invaded my every moment, both conscious and unconscious. Its tentacles wrapped themselves around all thoughts of work, of home, of family and friends.

 

I felt myself swaying in its power, its grip tightening with every nanosecond I tried to stop thinking about it. Like a mad, attention-seeking psychopath, ignoring it was not an option.

 

Then it was ten days later, 7am in the bowels of Columbia on 168th St. Electronic headgear was off. Earrings removed. Wishbone necklace set aside.

 

I lay down on the gurney, the cushion place under my knees for comfort. I twiddled the foam earphones and relaxed as the headphones were placed over my head.

 

The instinctive claustrophobia I normally feel failed to make an appearance, so keen was I to know whether the seizures had led to recurrence or not. CT scans only go so far….

 

They handed me the panic button. Wasn’t Panic Room a good name for a movie? Why the same thoughts each time.

 

Then the mask goes over my head, and foam pads are inserted each side of my head to inhibit movement. There’s a tiny mirror above me where I can see a bit of my forehead. Why? Note to self-moment: ask the technicians why that’s there. But it’s so trivial I never do. But I get a small sense of enjoyment with the familiarity of the question rearing its head.

 

Then I’m moved inside a donut. It’s not a coffin it’s not even like a coffin it’s designed to help me stay healthy yes it is it is is stay breathing be calm you had two home births for fuck’s sake.

 

Why is it so goddamn noisy, like a road works has invaded my head? Note to self each time, ask the techs. Note to self each time, don’t worry you know you’ll forget and you don’t need to know. Just behave and let them do their jobs. They want the best for me I’m so lucky.

 

Pause half way through. Inject me with contrast. Then pummel away again.

 

OK you’re done. They smile inscrutably. What must it be like to know whether the person is doing well or not and yet not be able to say? What secrets that basement must hold.

 

And then….. Just a matter of less than half and hour and nine floors up the elevator, along the corridor and into the neuro-oncology department. Dr Iwamoto arrives and delivers the headline:

 

“It’s a good MRI and I’m really pleased with your progress”.

 

YES

 

X