Just landed

It’s the first day of a new year and I’m on it. I’m sitting in 39G in a Norwegian airbus, sandwiched between a sleeping husband and a waitress who’s going to ask her boss if she can take a week out every two months to see her boyfriend. She keeps hinting she might quit if he says no. She was chattering away to her man and I could tell she was waiting for him to encourage her to leave. But he didn’t, and now she’s playing bejeweled on her iPhone too quickly, trying to work out what she should do. She has the whole year ahead, and doesn’t know where to start.

But I do. I’m nearly three years into my new life, and I’m more focused, more confident, more alive, than I’ve ever been. Years ago I watched a documentary about posh and bex. David had just failed to bend it like Beckham (check what sin he committed that took England out of the World Cup) and was subject to the full wrath of fickle English fans. The camera followed them into a lux car where posh reminded him: ‘whatever hits you makes you stronger’.

Ah the snobbery of the English. I found myself parroting this line, aping her Essex accent, dismissing it as the sort of cliche we (us truly posher brits) see as simplistic in the extreme.

And yet. And yet I find myself full of energy for whatever lies ahead. I’ve made it this far, and I really wasn’t sure if I would. Posh was right.

I’ve come through a year that saw us bury first my maverick, enticing, deliciously difficult 96 year old mother in law, swiftly followed by the distressing demise and death of my exceptional father.

I’m flying over the Atlantic for the fifth time  since this time last year. Each time I’ve watched people I love fall apart. I participated in beautiful, moving ceremonies that sought to express in some small way the contribution of both on earth. I find myself attacked by tears at unintended moments, grief hitting me with no warning. I’m comforted by the logic that points out their longevity. But it doesn’t distract from the loss.

My father was a great communicator. He often spoke in succinct, memorable phrases. When I was a young child, grappling with the growing realization that death comes to us all, he would reassure me by saying that he wasn’t afraid of death. I can hear his voice telling me this. I can see his face when he was saying it – his expression serious but gentle. His eyes unafraid to meet mine. A special expression for his child. It worked.

Last March I stopped all medical treatments for my brain cancer, on the advice of my neuro-oncologist. I’d blasted my body with two years of chemotherapy, immunotherapy, electrotherapy, together with a rich list of supplements, special nutrition, and intermittent fasting.

My MRIs showed ‘no evidence of disease progression’.

I came out of Dr Iwamoto’s office confused. Emotionally, I couldn’t equate being happy with stopping medical treatments. I had spent over two years staring down death, using every weapon I could command. Yet I was being advised to lay down my arms, even if the enemy could resurface at any time. 

I could understand the reasoning. Two years of chemotherapy is more than a year in addition to the standard of care for glioblastoma. The immunotherapy I was on is unproven as a mono therapy for my disease, but the hope is that it will leave an indelible impression on my immune system – creating a memory – meaning if it is to have an impact, it would have done so already. As for the electrotherapy… the immunotherapy caused an allergic reaction in my scalp to the gel on the arrays used to stick the Optune arrays on my head. But I was reassured that I had already worn it for longer than the nine months evidenced by research.

I’ve never taken medicine unless absolutely needed, and my MRIs have – to date – been good. But stopping treatments made me feel as if I was being forced to be a passive patient, waiting for a recurrence. Glioblastoma returns because it doesn’t grow as a clearly defined, solid tumor. Rather it spreads tentacles undetectable to the finest MRI and strongest radiation. The blood brain barrier, critical to keeping healthy brains healthy, becomes a foe for those of us with brain cancer, because it inhibits treatments getting through.

What was I to do? It was beyond me, psychologically. My weeble personality was struggling to bounce back up. I tried sticking to my regime of the ketogenic diet and intermittent fasting. I tried enjoying wonderful family holidays. I tried channeling my energies into OurBrainBank. I tried seeking a part time role in the workplace. Nothing worked sufficiently strongly. I went back to see my psychiatrist. We discussed my symptoms and came up with a recipe that combined medication to lift my mood, plus a psychologist to help me work through some of my deep rooted behaviors that weren’t helping, particularly eating too much. I have used food as a way to cope with anything that seeks to swat the weeble in me, my whole life.

Just as these new crutches came to my aid, the deaths of Pam and my father hit. 

And just as I sought to manage my grief, my son Felix broke his leg – while motorcycling in Vietnam.

Back to the here and now and the Norwegian airbus. I had five emergency weather alerts for New York when I woke up this morning in Essex. The flight is smooth. The waitress has played bejeweled for the entire flight. I’m clear headed. I’m looking back at a year that saw me gripped in a washing machine that just kept on and on, making me wetter and wetter, then squeezing all the strength out of me, taking away my ability for me to control things. But for now it’s stopped. 

I spent new year’s eve watching a rubbish old movie, eating a very English game feast, and sensing the warmth that being with my mother provides.

I have much greater clarity on what I should do in the year ahead. And, in brief, it’s about exercising the core of why I’m where I’m at: the power I have as a patient  living with one of the worst cancers that exists. 

What I’ve learnt last year is that I’m not as in control of my emotions as I had thought. When I’m able to rest my psyche, my mind can heal and reset and set me once more on the path of determination.

I’m not afraid of death. I had become afraid of life. Now I realize that the language of terminal illness is a barrier. Everyone dies, so life is, by definition, terminal. When I was told I had a terminal disease, what I heard was that my life could end any minute. When I was told medics were working hard on finding a cure, I heard that there was an aspiration that at some time in the future, we may find a way to stop this disease causing death.

What I now know is that, because I feel good today, because I have no evidence of disease today, because I’m happy and loved and loving others today, then today I am cured. Today I am alive, well, and embracing whatever hits me in this new year. I can enter 2019 fired with the knowledge that the skill set I have has served me well so far, and that I want and can and will make better use of who I am to help rid the world of glioblastoma. Because the most powerful people in this story are people like me. Impatient Patients.

The weeble is standing up straight. Here we go.



See-sawing up and down

Our house has a cellar. In the cellar is a black metal box. Inside the black metal box are my old diaries.
Inside my old diaries are really boring accounts of what I did on such and such a day, some random year past.
The first paragraph invariably started along the lines ‘I’ve got so far behind… I have to catch up… I got the bus to blah blah and changed to another bus to blah blah’. YAWN.
So here I am, catching up with you, dear reader. The last time I wrote was almost 13 weeks ago…
Does this signify some terrible bad luck? Have I betrayed you by not keeping you abreast of my life? Oh, the arrogance and the assumption of interest. Sorry. But I want to relay where I’m at, and where I’ve been. And during this overdue therapy session, aka writing a blog post, perhaps I’ll get some personal enlightenment as to why it’s taken me so long.
The new norm of ordinary, which I wrote about last time, seems to be taking root inside my psyche. I had a long conversation yesterday with a woman whose husband has glioblastoma. She’s terribly upset that he has this horrible disease, and frets that he doesn’t seem to be actively pursuing all the treatments out there.
As we were talking, I felt the same sensation as when I go online and delve into the GBM community.
I feel ordinary. Really, boringly, ordinary. My anxiety about where the disease will take me has flipped to anxiety about how far I can take it. How can we engage more people to use the OurBrainBank App? How can we secure more funding? How can I get person W, Y, or Z to reply to my emails??
Ooooooh but it feels good.
I’ve stopped taking chemotherapy. Two years of seriously heavy toxicity drugs, blasting my system every month for five intense days. Over.
I’m tapering off the immunotherapy – subject to the next MRI or two.
I’ve stopped waking up in the middle of the night and staring at the window blinds in terror.
If that’s a list of things that are ending, it’s more than counterbalanced by a list of things I’m making happen.
OurBrainBank is up and running. Hang on, I was only diagnosed a couple of years ago with deadly brain cancer. You’re telling me that you’ve got a cooool nonprofit up and going, with an amazing board, hardly any funding, but with charitable – 501c3 – status, Institutional Research Board (IRB) approval, and more than 200 people with glioblastoma and carers using the OurBrainBank App already?
This time last year I was scared to book the summer holiday. I worried I might have a recurrence, and our flights might be nonrefundable, and what would that do to the tiny pot of $ I will leave them?
This morning, Ed and I talked about maybe hopping down to Costa Rica with the kids for a couple of weeks. I didn’t even blink.
It’s not that I’m in denial. It’s that I’ve figured out how to really, really live day by day. How to get joy and energy out of progress. How to respect the learning – intellectual, psychological, emotional – that I’ve absorbed since this extraordinary chapter of my life started.
When I go into the MRI tunnel, I sometimes drift off to Greenwich Park. There’s a playground there. It’s the see-saws I remember most vividly. They were really long, so you could go quite high and feel like you were dangling in space, or crash right down to the bottom, invariably screeching and laughing in equal measure.
It’s an apt metaphor for what I’m going through.
Year one was bottom of the see-saw; year two wobbling a bit, in every way feeling up and down, often simultaneously.
Now, as I enter year three (oh, the utter joy in typing that number) I feel the see-saw lifting me up. There’s a sense of light-headedness as I feel more able to accept how well I’m doing with this bugger of a disease. And more proud, strong, delighted… at the extraordinary feat we’ve pulled off, of creating OurBrainBank.
If GBM is about death, destruction, negativity, pain and utter hopelessness, then OurBrainBank is the opposite.
I don’t know what lies ahead, but whereas I equated that with fear of hearing that the cancer’s come back, I now increasingly see it as revealing the mystery of how we can beat the bugger.
This is no ordinary initiative.
This is about switching out those on the bottom of the see-saw – the patients, stuck with their uncontrollable bodies riddled with diseases they don’t know how to treat – while medical deities with acronyms after names, white coats, extraordinary language where words only come with a minimum of three syllables, pronounce on treatments and prognoses.
Flip it. I’m at the top. I’m telling you that the OurBrainBank App is there to serve me, recording how I feel I’m doing, every single day. And what I see from up here is that the digital revolution, the growing awareness that patients can play an active role that helps not just them but science…. Is inexorably making progress.
My MRI shows ‘no evidence of disease’. But we know that MRIs are indicative, not definitive. So, TEF (The Evil Fucker, aka my brain tumor), I’ve decided that if you’re invisible to the MRI, then you’re invisible to me. You’ll stay right down there at the bottom of the see-saw because I’m quite happy at the top.
You will try. But I’m so much better than you. I can create, you can only destroy. I can bathe in the intoxication of succeeding in developing something that can, is, will…. Help me and oh so many others. You have nothing to live for. You don’t even want life. How sad is that. How bad are you.
Stay that way.

Eloquently ordinary

I was listening to a radio show featuring a veteran of the Iraq war describing how his decision to step out of the Humvee that his best friend was traveling in led to his survival and his friend’s death. He didn’t know why he’d decided to get out. They were in a calm area. The Humvee wasn’t attacked. He chose – for no clear reason – to step out and walk. His friend stayed inside the vehicle. The Humvee drove off. The driver lost control, no-one knows why, and everyone inside died. The inexplicable nature of that moment tortured the vet. That split second decision, made without conscious thought, yet with such massive consequences. One lives, one dies.

Two years ago I decided to do everything possible, and everything impossible, to live.

The veteran who lived couldn’t cope with the hand he’d been dealt. He relived the moment from when he and his friend changed from being as one to being at the literal opposite ends of life’s spectrum. He found himself caught in a seemingly forever freeze-framed state of PTSD, unable to ‘move forward’ as we might say. Eventually he sought solace in communicating with others. He joined an initiative which brings together vets with country music artists, allowing them to express their emotions. But it was in his meetings with his psychiatrist that he found the insight that got him through. He realized he had a choice. To stick with ‘what if?’ or to move to ‘what now?’.

Blindsided by my diagnosis of glioblastoma (GBM), I grabbed every treatment I could get. I switched doctor so I could have more than the Standard of Care, even if unproven. I embraced complementary therapies, adopted the ketogenic diet, fasted twice a week, walked every inch of the park. I couldn’t help but think about GBM all the time. I saw a psychiatrist.

I’ve been reading a fascinating autobiography by Kate Bowler, assistant professor at Duke Divinity School. Kate is an expert in the ‘prosperity gospel’, a branch of Christianity that promises a cure for tragedy. Its bold central claim is that God will give you your heart’s desires, whether that’s a buoyant bank account, or wonderful career. Or healthy life. Kate’s faith has been massively stress-tested since she received a diagnosis of stage 4 cancer. She has just published ‘Everything happens for a reason’. She writes about the contrast in how she viewed her life pre-diagnosis and post: “If I were to invent a sin to describe… how I loved – I would not say it was simply that I didn’t stop to smell the roses… I failed to love what was present and decided to love what was possible instead.

“I must learn to live in ordinary time, but I don’t know how.”

It’s taken me two years to live in ordinary time. It feels good.

Over the next few weeks I will complete two years of chemotherapy, two years of immunotherapy, and nearly two years of wearing the Optune device. I am extraordinarily lucky to have the body of a workhorse, able to withstand all these drugs and more. At the same time, I’ve fed my psyche by focusing on what I can do, rather than what I can’t. I can learn about the disease. I can stare down the dire survival statistics. I can face the challenge that no real progress in treatments has been made since 2005. I can turn these realities into challenges that we will and can overcome. So when I look at the scan of my MRI from last week and I see beautiful strange entrancing squiggles, but no bright alarm cancer lights, I feel the vibrancy of life in the here and now. And when I get up in the morning and think about my day, I find GBM doesn’t pop up as the irritating alarm in the way it did a year ago. GBM will never let me be considered ordinary, but I’m starting to live in ordinary time.

I continue to benefit from constant, real-time infusions of interaction treatment from friends, family, colleagues, others with GBM. I wonder how anyone can ever survive solitary confinement. Because each interaction feeds what is left of my brain with new thoughts, new springboards that help refresh me, keep my internal dialogue alive, and help me find the right path for me today.

In just over two weeks (what is it with the number 2??) the OurBrainBank app goes live. Yes! Can you believe it – it’s really happening and it’s really bloody brilliant! We’ve built a board of outstanding human beings, spanning medical and tech experts to lawyers, marketeers, and people with glioblastoma. Check out my fellow GBM traveler, Adam Hayden, who joined us most recently and who writes like a dream https://wordpress.com/read/blogs/118032889/posts/3592

OurBrainBank is founded on the belief that if you design a treatment for a disease around the person experiencing it, you will have a better chance of meeting need. Our initial tool makes this happen by using uMotif’s brilliant app. I’ll blog as soon as we’re good to go. But the point is that we are hoping – determinedly so – to bring together people like me and Adam who are living with GBM, with people like you, who are anxious about people like us. We want to use our collective power to make it possible for everyone with GBM to live way beyond two years post diagnosis. And to live in ordinary time.

But these are extraordinary times. Technology allows us to connect, collaborate and, we believe, conquer. Charles Darwin was right on the money when he wrote: “It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change”.

Which leads me to one of my all-time favorite lines from the Bard himself. Coriolanus’ mother says: “Action is eloquence, and the eyes of th’ ignorant more learned than the ears.”

OurBrainBank allows us to monitor and manage the change that GBM provokes in our lives. In so doing, our lives will morph into data, and transform again into medical currency that can fuel research and, ultimately, a cure. That is our long term goal. Capturing our symptoms is gold dust for the learned medics. But Our data is the first step. Unlocking the extraordinary power of patients is the key. People like me and Adam have learnt more about life and death in the last two years than most people will ever get a chance to. We are students of the University of Creativity in the face of Adversity. Our first step is to engage many more people living with GBM and their caregivers. From Day One, I reckon the OurBrainBank app is going to help people like me adapt, to move from supposed ordinary lives to extraordinary, and back to ordinary. To do so smoothly, effectively… and eloquently.

And perhaps to a New Ordinary.




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.

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.
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.
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’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.”

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.

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
Revise TO DO list and Get On With It.
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)