To Know and Not to Know

A very wise client of mine, Elizabeth Al-Khalifa, who headed up equality and human rights at the Department of Health, once told me that the key to surviving at the top of the UK civil service was ‘being comfortable with ambiguity’. This struck me as both true and peculiarly ironic in my current life, given that it came from the government department perhaps most focused on certainties.
You’re either healthy or sick. Alive or dead. With cancer or without.  The evidence-based trial system will provide irrefutable answers. Objectivity, evidence, data, and outcomes outcomes outcomes rule.. And yet… the more I delve into my condition and experience my experience, the more I hear Elizabeth’s words ringing in my ears.
I feel fine. I’m on the ketogenic (Atkins) diet. Starving cancer cells by eliminating sugar and carbs and eating only protein and fats. (Bring on the steak and salad). My energy’s up, waistline down, skin clear and eyes shiny. The electronic helmet is a major pain in the wotsit, but a manageable pain in the wotsit. The immunotherapy is a breeze, even if the hours and hours of inexplicable waiting I go through each time I wait for an infusion is an exercise in patience-stretching.
OK so I’m more tired, but that’s why we got the huge bed and the AC. And OK so I can get glum, hence the purchase of a huge ball of fluff aka Jazz, a wheaten terrier I defy anyone not to fall in love with.
So I feel fine, but am I fine?
Of course I want to know that the treatment I’m having is working.  $12K worth of nivolumab (the immunotherapy I’m taking) courses through my veins every month. Turns out we have no way of knowing if it’s working without looking at MRIs. And even then the MRI might show a flare that could be anything from the after effects of radiation to my immune systems flaring at the nivolumab, before embracing it to fight the cancer. The only indications we have of how I’m doing are things like whether I’m having more headaches, can follow the nurse’s finger as she moves her hand (I have to suppress a giggle each time as my father used to test my sobriety as a teenager back late from the pub by waving two hazy fingers and asking me to count digits. Yup, I invariably failed the test). Or my favorite, which provoked an ‘oh god’ reaction from Ed was when I was challenged to recite the months of the year backwards. Of course MRIs do tell us a lot, but it’s not definitive and not embracing of all the treatments I’m taking.
So I’m living with uncertainty. I know we are all in this club, but the scale and stakes of difference between certainty and ambiguity for me is much bigger than yours. And I’m finding navigating this terrain tough.
Frustrated by the familiar tale of the more I find out, the more I appreciate I don’t know. Unclear about how I can use my patient-power to accelerate progress against brain cancer. I’m on an uncomfortable see-saw, where some of the time I feel confident and full of clever insights into how if only the medical profession could become truly patient-centered all would be fine, or if only it would apply universal design principles and crack the hardest cancer first (rather than ones that impact on the largest number of people) and so on… and then the see saw swings abruptly and I’m met by insurmountables, like the bloody blood-brain barrier, unique in the human body, and both its most valiant protector as well as its built-in suicide bomber. Or how my own fixation on all things brain cancer might not be shared in equal measure by y’all.
Sometimes I feel that it’s contradictions, not ambiguity, that are driving me most nuts. Rest so I can get over the radiotherapy; exercise so I keep my immune system fit for chemo. Stay away from the online community to stay sane; get support from fellow travellers offering the solidarity of those in a horribly elitist club. Add to the cocktail with supplements and therapies – they can’t do any harm; keep focused on the main treatments and don’t spend precious $$ on things that are unproven and have little effect.
I’ve got to get to the top of the class. Navigate the ambiguity and see it as an opportunity to make headway. Here’s what I do know for certain:
–          We need more big bucks to crack brain cancer – one of the hardest cancers to treat, but affecting one of the smallest patient groups and therefore too often under the funders’ radar.
–          We’re in a Catch 22 where funders won’t fund ideas that have no evidence of potential, but without the funding it’s hard to explore potential, let alone secure the evidence.
–          There’s a wealth of evidence out there from the online patient community that isn’t captured or used. Because I can access knowledge of treatments, fellow patients and carers, and track my fitness online, I’m managing my health in ways impossible for previous generations.  So there’s bounty out there and I want to figure out how to get at it, so we accelerate progress towards cracking brain cancer.
My Doctor quite rightly stresses that anything I do to encourage patients to share experiences has to be easy, simple, practical.
Cancer can be inscrutable, incorrigible and inexplicable, and brain cancer perhaps the most complex cancer of all. There is a beauty in facing up to the behemoth and challenging its clever, wicked ways by saying the answer to TEF starts by putting human beings and their 360 degree oneness at the center of the plans of attack, understanding every facet of their experience, and letting mad and meaningful innovation flow.
I love the writings of John Maeda, author of The Laws of Simplicity. I can’t read this sentence without nodding vigorously: “We seem to forget that innovation doesn’t just come from equations or new kinds of chemicals, it comes from a human place. Innovation in the sciences is always linked in some way, either directly or indirectly, to a human experience.”
And I’m living it.

Cocktail Hour

Mine’s a margarita. But as with any cocktail, it has to be  just so. Combine agave tequila with a small amount of agave nectar. Add freshly squeezed lime, no pips, but some pulp.  A bit of rough. So, too, the ice. Crushed but not too granular. There is of course only one salt – Maldon – to use. This has to be crunched by hand into smaller pieces before the rim of the glass is rolled in it. For me, it’s got to be a good quarter of an inch round the edge. And the glass has to be a classic cocktail glass with a tall stem and wide rim circumference. Only have one. Sometime after 6 and before 8.
It’s not just the combination of ingredients that has to be spot on. Nor the ratio between them. The magic lies in the mix, because when it’s on target each individual ingredient stands out so much better than on its own.
Same for fighting TEF.
I’m now on so many therapies I have visions of Maureen Lipman in that ‘80s ad for BT were she praises her grandson for getting ‘an ‘ology. “You get an ‘ology and you’re a scientist!”. I get a therapy and I’m cured! If only it were that simple.
Here’s what I’ve done and am doing, four months in:
–          Immunotherapy
–          Radiotherapy
–          Chemotherapy
–          Electrotherapy
Supplemented with aspirin, celebrex, melatonin, levetiracetam (note to normal people: you can gain subconscious bonus points from consultants if you call meds by their real names, not the brands), calcium, vitamin d, vitamin b, frankincense (oh yeah – and sniffed, what’s more). Next week I finalize the additional 15+ supplements I’m considering adding to that list. Then there’s the medical marijuana to add into the mix. Oh, and I haven’t even talked about the ketogenic diet I’m following. All I need now is Tom Cruise – hang on, I don’t think any of us need Tom Cruise anymore – or Mr Bond to shake, not stir….
So my University of Life course has narrowed of late, with my growing specialism in oncology. Bit tough when I was always hopeless at science. Luckily I took the precaution of marrying into a Medic Mafia, aka the Pilkingtons. Where they help probe the finer details of a PD-I checkpoint inhibitor, I default to my historian training.
The most successful patient advocacy movement of the 20th Century has got to be the Aids lobby.  Aided (sorry) by years of dogged campaigning, the patients knew how to get their voice heard. They didn’t just craft a case and blast the medical research establishment. They tipped urns of ashes over the White House lawn. They blended a unique campaigning cocktail, while the medics blended a range of antiretroviral medicines.  The resulting cocktail has turned what was certain to lead to a swift tombstone into a manageable disease.
A decade ago, the buzzword amongst many oncologists was targeted therapies. The mapping of genes and greater understanding of individuals’ genetic make-up would inevitably lead to individual therapies for each unique patient. But it isn’t just patients who are complex. Cancer is really a name for a wide-ranging, highly complex group of diseases, many of whom have a tendency to dodge bullets and morph into new horrors, in much the same way a Hollywood action movie makes the impossible believable. Sadly, when it comes to cancer, it’s true.
Fighting with a complex array of armory that both blocks as many pathways the cancer cells seek to fight back from, as well as present strengths borne from the synergy of the cocktail mix, is a route many in the cancer world are now pursuing.
Makes sense to me. But if only they could relate it to fabulous alcohol it might sound a bit more exciting, non? It’s not for nothing I’m in PR.
In other news…
The electrodes are on. The backpack is full. The imaginatively named ‘device’ is lit. And the batteries come and go. I started Optune, made by Novocure, last Thursday. The company sent a charming chap round to run through the whole malarkey. I couldn’t actually understand a word he said, but luckily the website has lots of useful videos. Except of people I can relate to.
So the day before he comes round, I wait until everyone’s left the house. I creep into the bathroom and tentatively start shaving the little hair I have left. I discover Ed’s shaving cream. Who knew guys have it so easy? Off it came. And then, thanks to the Kardashian gels, I take a selfie. Time to bust out of the help site and seek support, encouragement and energy from the world…. via facebook. Wowee! I thought the only way to get a compliment out of you lot was to post a pic of the kids. Who knew I was Charlize Theron, or the one from Ex Machina?
One of my big fears was how people in the street would stare at me. But what I hadn’t clocked was that when they stare, they make sure I don’t see them doing it. Which is exactly what I do when I see someone looking a bit different. More importantly, I hadn’t anticipated how proud I would feel, having embraced a treatment many are uncertain of, yet which doesn’t include any toxicity. When I met Deb and Claire at the Farmer’s Market on Saturday, I found myself tearing off the headscarf, and asking Deb to film me as I walked around the market. Few starers betrayed themselves. I started wondering about how to draw more attention to my head, rather than less. Why a fake wig when my old hair was so past its sell by date? Jude – surely Damien could be persuaded to paint some dots on the ceramic dishes pressed to my skull? Let’s be proud and confident that despite whatever, wherever and however TEF tries, it Will. Not. Succeed.
Which reminds me. Another one to add to the list:
–          Psychotherapy.
Back to Stephen Jay Gould, whose writings are continuing to blow my mind. Take this: “Science is not a heartless pursuit of objective information. It is a creative human activity, its geniuses acting more as artists than as information processors.”
After all that meandering, I think I deserve a  very special cocktail.

Good for Now

My first MRI since completing radiotherapy and chemotherapy was clean…. YES.
This gives me two months to take a deep breath and relax.
The nanosecond we heard the news, a cold sore popped up on my lip. Next time I need valium or something to dampen the anxiety.
But oh the joy. Such a relief. I got so anxious I developed a twitch, noticeable only to me, on the left side of my upper lip. I feared this was a sign of tumor regrowth, even if on the wrong side of my body (my tumor is in the left side of my brain, meaning any recurrence is likely to show signs on the right side of my body). Funnily enough, the twitch has now switched off. Ha!
Now we look forward to the next wave of treatment. I tell you, I’m so cutting edge. It’s exhausting being at the forefront of cancer treatment fashion. One minute I’m infusing myself with the immunotherapy that’s turned President Carter’s cancer around, the next I’m preparing to shave the little hair I have left, in order to wear a bunch of electrodes on my head.
For years and years we’ve treated cancer with three weapons: surgery, radiotherapy, chemotherapy.  While the world’s labs have been working away at diving deeper inside our bodies to find answers to cancer cures, 78 year old Professor Yoram Palti dreamt up electrotherapy while settling into retirement in Israel. No doubt bored with not working, Palti dusted off his ideas from his doctorate days, decades old.
He told ‘Globe: Israel’s Business Media’: “My friends would sometimes ask me: ‘Why not search for a cure for cancer?’ So I did.” Inspired by an equal love of medicine and engineering, he decided to integrate electric fields with living tissue. He set up a lab at his home in 2000 and, 16 years later, has seen the Phase 111 trial of his therapy for people newly diagnosed with brain cancer, like me, halted because its success meant everyone on the trail should be offered the treatment.
At a basic level, how it works is that I get to wear a backpack that feeds electrodes attached to my head. These electrodes carry highly charged particles that create an electric field and attack brain cancer cells. Specifically, they block further division of cancerous cells in the brain. So this is proven to extend the time between diagnosis and recurrence. This we want, as when recurrence happens, it tends to narrow the time window to act.
My neuro-oncologist – fabulous Dr Fabio Iwamoto at Columbia – said the medical community thought this was bizarre… until they saw the data.  Now it’s thought that it will soon become the norm, alongside surgery, radio and chemo.
Closer to home, what it also means is that I’m going to be bald with great white pads stuck to my head for the next -nine months. Plus I’ll grow a sort of 2016 Met Ball techno-tale, in the shape of a big electric lead that feeds into an 8lb backpack full of batteries that will help shift those pounds. Definitely designed by engineers rather than fashionistas. Come to think of it, if only I’d known the theme of this year’s ball ahead of time, I could have challenged the world’s designers to design head gear for Optune that will encourage people to wear it.
The company is coming round next week to show ‘my carer’ how to shave my head and fix the pads and ‘arrays’, something that needs to be done twice weekly. I’ve requested an evening appointment as something tells me Tess and Emma might be useful here. Not that Ed isn’t the most caring partner in the world. But I’m thinking the skills acquired by teenage girls in the hair and make-up department might enable them to demonstrate their particular expertise in a way that complements his support and that delivers the best possible care to my poor beleaguered scalp.
The online brain cancer community is charged/buzzing/literally electric (oh dear, bad puns, but I can’t resist… talk about a gift horse) about how to wear this contraction. Did I mention I’ll need a special cooling pillow from Bed Bath & Beyond plus fan at night, as it generates heat? Oh, and this also means wigs are ruled out…
But what really did it for me was when someone online relayed their experience of being accused of being a suicide bomber when on public transit. Imagine a large electric wire leading from a backpack (containing batteries with flashing lights and alarms when things get too hot – like on the NYC subway in summertime) to a head with electric pads on it… put like that perhaps it’s not unreasonable. This provoked an outpouring of similar tales online, with responses that were strangely practical and solution-oriented, unlike mine which was to guffaw in a macabre kind of way.
Some people make cards they hand out to those staring at them, asking for their prayers, not their fears. Or explaining they have brain cancer and this treatment is a GOOD THING.  I think I’ll wear earplugs.
In between feeling in awe of the creative thinking behind this treatment, and relief that its high cost is all covered by our insurance, and dodgy humor at the idea of wearing this contraption, I feel… well. Excited and terrified in equal measure. This is a notable new chapter in the brave, mad, sane, cumbersome and confusing journey I’m choosing.
Next time I’ll tell you all about medical marijuana. Much easier for my head. Ha!

Chapter 1

January 23rd, 2016. Around 3pm. In the Catskills. Not enough snow to cross-country ski, so let’s go for a hike. Me, Alex, Gretchen, Janet. We’re walking up the hill and I can feel myself more breathless and somehow – intangibly – different, to how I normally feel on a walk like this. We’re nearing a sort of cross-roads of paths, and the conversation turns to whether we’ll continue or go back. I’m just not sure. I want to keep walking but I don’t feel right. But should I push myself on or urge a turn back? I have to say something but I don’t know what to say. I’ll start and then it will be clear. But I can’t form the words I’m not sure I want to say. Just sounds. I can see their faces, their increasingly concerned smiles. Janet looks at me encouragingly, but with a puzzled look: “Just take your time, Jess, and try again”. I try to breathe calmly, control slipping away like sand in an hourglass.  I can feel my arms stretched out, being supported. Then I’m out.
I open my eyes and there’s Eric, Josh, a crowd of friends, and a small vehicle. Everyone’s being very calm. So I am too. But I know something has happened to me. I don’t know what’s going on but Ed’s in the car so I’m OK. The cheery paramedic sits by me chatting away, just enough to stop me thinking about what’s happened, but not enough to really engage me. I know I’m still on Planet Earth but a tectonic plate has shifted somewhere.
January 26th, 2016. Middeltown. I undergo a five hour operation to remove a grape-sized tumor in the left parietal section of my brain. We know it’s a primary tumor, meaning it hasn’t originated from elsewhere.  My fear that an MRI would find me riddled with cancer from head to foot is set aside. But a week or so later, once the pathology comes through, we hear it’s an aggressive, malignant tumor. We also know that its location, size, and good surgery are all in my favor. We tell the kids and I sense I’ve got my gang behind me all the way. The Guardian tells Ed to take all the time he needs. FleishmanHillard, who I’ve spent less than a month with, are instinctively and unbelievably adult, empathetic, generous and caring. My mother asks Ed how long he can take to care for me. He answers: “I’m here for the duration”.
I’m treated at a brand new hospital – Orange Regional Medical Center – which pleases me, negating my fear of hospital super-bugs. I’m lying in a luxurious ICU room, with Ed in a 22nd Century Parker Knoll chair beside me, either watching the bigger-than-we-have-at-home TV selection, or gazing out at the Catskills outside. You won’t believe the care I get from the nursing staff. How are they so genuinely lovely, even while performing really horrible unmentionables like fitting catheters?? As for the machines. I’m floating aboard a magic carpet, masked as a state-of-the-art bed. It carries me off to mushy marshmallow sleeps, induced my anesthetic and fed by regular intakes of oxycodone. My magic carpet can even detect when a part of my body hasn’t moved, compensating by moving the relevant part of the bed, thereby avoiding bed sores.  Mmmmm.
Our friends are worried about me having brain surgery outside of the City, but it’s dangerous to move me. Andy Postman calls his former college friend, a noted neuro-surgeon who works somewhere upstate, for his advice. Dr Jeffrey Oppenheim answers his call: “You’re calling me about Jessica Morris? “That’s who I’m scheduled to meet in a few minutes.”  Serendipity is alive and well and on my side. I get excellent surgery from our friend’s friend who describes the difference between healthy brain tissue and cancerous as being like looking for vanilla in a jar of mayonnaise. Later I find he’s performed a really good surgery – what is known in the medical lingo as a ‘full resection’. TEFs like mine grow with microscopic tentacles, which is why additional treatments are needed. But still – the surgery was a literal life saver.
I haven’t written Chapter 1 before because this was all unplanned. The blog grew from the dual need to coordinate the overwhelming amount of support offered, and our desire to share updates on my journey with you. At first, Ed emailed family and the friends who’d been with us that weekend, but then more and more people contacted us and so we wanted to find a way to keep people up to speed.  But by then we were onto Chapter 2.
In a couple of hours from the here and now of me typing this blog today, we get on a flight to Chicago for the weekend, thanks to the incredible generosity of Ed’s sister Karen. It’s our family reward, a weekend off from the narcissistic, self-absorbed and attention-grabbing TEF.  My next post will start with a new round of treatment, with January 23rd very much behind us.
So, many of you are owed Chapter 1. But Janet, Alex and Gretchen’s versions would be very different. While I saw my eyelids close, they saw my eyeballs roll. They witnessed a seizure, with frothing and all sorts of yuk. They kept me upright, and saved me while getting emergency help. And as Ed stayed with me through the surgery and recovery, they took care of our kids – Janet and Josh coping with Emma and Tess and manifold homework/test requirements; Gretchen winning Project Runway for morphing Emma into Emily Dickinson for the Waxworks Show – allowing me and Ed to somehow start to come to terms with the split-second, door-sliding, good-bad, up-down, curve-ball-heads-tails what??
That my life suddenly morphed into.
And what a life. Daughter of Bill and Liz – or Bliz as I like to call them – who are, as I type, somewhere over the Atlantic flying back after a two week visit – who I love beyond anything, anywhere, ever. As I do Ed, Felix, Tess and Emma. And my siblings, their kids, my wider family, my friends. Jaez I really didn’t plan to get corny, but writing about how TEF first made itself known brings a big (non-cancerous) lump in throat.
Chicago is our prize for getting this far, in such good form.
I was at a breakfast meeting yesterday for The Osborne Association, courtesy of Wesley Weissberg and David Goldberg. Go google if you haven’t yet had the pleasure of knowing about this outstanding organization. At the breakfast, one of the speakers said something that really resonated with me: “Having family and support around you is incredibly empowering”. They were talking about people who are incarcerated. TEF wants me to be its prisoner. The fact that I’m not is in large part because of you. Whenever I get glum, I see someone. I interact, talk, think, feel.  But it’s more than that. It really is empowering. Every interaction generates energy and motivation and ideas and happiness. I come alive with you. I feel well, alert, intelligent, and with a confidence underpinned by a steely-eyed determination – nay ruthlessness – behind my smile. I’m fighting fit.
Bring on the next Chapter.

Done with Zapping

We’ve got a family text thang going. The other day, Emma, who was away with friends skiing in Colorado, sent a text saying she’d had a dream about her grandfather Tom, Ed’s dad. Felix replied saying he’d also dreamt of Tom. And I felt very odd, as I’d been thinking about him a lot also.
Tom was an intoxicating powerhouse of a man. A medic specializing in treating diabetes – a pioneer of lap band surgery – brought up in Germany by a German Jewish father and English mother. They moved to the UK in 1936, when he was 15, swopping his father’s last name of Berend for his mother’s – Pilkington. He was sent to boarding school without a word of English. I remember asking how on earth he’d coped with that. He’d looked surprised at the question: “It wasn’t a problem – why would it be?” he had answered, in his impeccable London English.
Tom’s parents were musicians, and he an accomplished violinist. He and Pam, Ed’s mum, took us to the opera many times.
I, too, grew up in a musical household. Even when I was a hard-partying South East London teenager, I still got up at 8.30am on a Sunday to sing at St Alfege’s without a word of protest.
Throughout the course of my radiotherapy, I’ve listed to jazz, blues, rock, pop, soul, reggae, hip hop… kind of you name it. But no classical.
So when I was pondering what lucky composer would fill my head for my last day of radiotherapy on Monday, my mind lept to Tom, to classical music and to his favorite opera.
There was only one contender. I jumped up onto the gurney, pulled that mask onto my face. Closed my eyes and kissed goodbye to the zapping as the Ride of the Valkyries blasted my earways.
This is not about Star Wars or Apocalypse Now (even if my allegedly educated children think so). It’s about me maximizing my not inconsiderable strength. Staring TEF down for as long as it takes.  And telling it to bugger off to Valhalla on a one-way ticket.
Wagner kept going (and some). Me too. With radiotherapy over, the next act kicks in. The immunotherapy infusions continue (third one yesterday) and soon I will resume chemo, on a five-day a month intensive schedule. The big one to get our heads around is the electrotherapy. If you want to show sympathy and get creative, google Optune, made by Novocure. Somehow  I’m going to figure out how to wear this extraordinary contraption. The electrodes have to sit tight on my head and generate heat, making wig-wearing tricky. Which is sad, as one the fabulous Carol at NYU Radiology only went and bought me a wig! See pic. I sort of hope that when my real hair is allowed to grow back, it might look like this…(this is me trying to take a selfie a la Kim).


I know this is deeply politically incorrect, and many people have and are and will suffer terribly from chemo nausea making it hard for them to eat.
But I do think it unfair that this one side effect which could have led to me emerging from this intensive treatment with an actual bonus – fantasies of a Jessica Morris morphing into Kerri Russell sortathing – has been denied.
The concrete bunker super-factory known as my stomach is very much alive and, as has been the case since 1963, with a seemingly insatiable appetite. Luckily friends continue to deliver the most fabulous feasts. It’s not all bad, though. I’m a sugar-free zone, as TEF is apparently magnetically attracted to all things glucose, which works as a super-food, enabling TEF to grow.  Same with me, which is all the more reason to steer well clear. But once a week I go further, and fast. It seems TEF is clever, but not that clever. 12 hours into a fast it gets confused at the change in routine. I picture it sitting around, complaining ‘where’s my dinner’? And feeling all at odds. Which is exactly why fasting is good, as while TEF is wondering where the next delivery’s coming from, it’s distracted from its normal evil wrong-doing activity, ie causing trouble for me.
I know I’m lucky to have dodged the nausea bullet (for now). But not so sleep. This other, much trailed, side effect from radiotherapy, has now kicked in. I march back from daily zapping to dissolve into afternoons of Cornish clotted-cream consistency sleeps. A rare moment of wisdom saw me arrange to have our bedroom decorated just before treatment started. It is no longer the bedroom. Not even a master bedroom. It is now a zen retreat of triple Michelin-star marvelousness. Fluffy duvets, fur throws, cashmere blankets…. Couldn’t be more perfect.
I really have very little to say other than – all is good, roll on end of zapping (Monday next week), next immunotherapy infusion (Tuesday next week) and then more pills, more medics, and the mad electrodes. I’m doing good. I don’t know why I feel happy, but I do. I was struck by Decca Aitkenhead’s extraordinary piece in The Guardian a few days ago, where she described her partner’s death and her treatment for aggressive breast cancer.  This leapt out to me:” When Tony died, no one knew what to say. When I told people I had cancer, everyone knew what I should do… Above all – and under the circumstances, this one felt like a tall order – it was imperative to Think Positive. We all want to believe there is a cure for bad luck.”
The same day I read this, my addictive googling took me to the writings of Stephen Jay Gould, paleontologist and educator at Harvard University whose book ‘The Median is the Message’ re-wrote the rule book on how to interpret statistics. Stephen lived with cancer for many years before dying in 2002. He wrote: “Attitude clearly matters in fighting cancer. We don’t know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer.”
What I love about this is not just that it blesses one of my few, genetic pluses – the ‘Weebles wobble, but they don’t fall down’ phenomenon – but that it also squashes the need for evidence. There is no evidence to support his point. There is also no evidence to support what I’m doing with the immunotherapy. But there’s the magic combination of belief, and common sense.
Works for me.

10, 9, 8…

Ten treatments to go. As I twiddle my toes to Youssou N’Dour and Nenah Cherry singing Seven Seconds away… so many numbers, digits, forms….
Life doesn’t get much more dramatic (I hope) than brain cancer. But there is a side to it which is really, really boring. Endless forms to fill out. Pills to take. Meetings to be had. All of which involve waiting. My whole day seems taken up with that bloody subway ride. The march from 34th and 6th down to 1st avenue. Turn left at reception. Follow the blue line. Be amazed by the harpist/violinist/guitarist playing in the waiting area of a Monday. Suppress memory of waiting 11 hours at the Whittington for Ed to be X-rayed when he’d been stabbed in 1987. Not a nurse in sight, let alone harpist. Catch elevator to second floor. Time my steps carefully so I don’t have to pause while my hand triggers the hand sanitizer to drop its load. Rub in while turning right for radiology, pressing the big button that opens the door for me (wait, am I now counter-acting the hand sanitizer by picking up germs?! methinks monotonously every time). Say hi to Natalie at reception; admire her yet-another-new hair style. Place hand on space-age palm reader. Suppress repetition of thought of counter-acting hand sanitizer on grounds of really too dull. Wait for my guys. Duh all the technicians are men and all the nurses are women.  Check which of Harry’s numbers on my bespoke apple shuffle I want to hear today. Jump on gurney, place head for helmut. Twiddle toes. Get outta there.
TG for my mates, accompanying me on this journey every day. And TG there are only ten left to go.
I’m a bit more tired, a bit more chesty. Or is that because I keep being told that’s what I’ll feel? I’m certainly more bald. Rather dramatically. From the front I have a fabulous fringe (much as I love this fine country, bangs for a fringe seems a poor swap), but from the back it’s like some UFO has landed and  burnt a huge crop circle. There’s a fringe left at the bottom. A sort of mullet.  Nice, eh?
I need to wrap this treatment, get back to work, and get what brain is left  back working on things more meaningful than how to describe my hair. And I need to see a therapist.
More soon x

In the Bullring


My metaphor madness continues. I’ve been increasingly obsessed in getting to know my enemy, aka TEF. As we all know, it’s a frighteningly intelligent, tough and complex foe. That’s one of the main reasons I plumped for a strategy of throwing as many weapons at it as early as possible, rather than rely on the standard of treatment for my kind of brain tumor.
So I’m now a Spanish matador, playing a psychological game of engagement and warfare with an enemy that is as keen to win as I am. I got some new ammo last week, with funding secured for both the immunotherapy treatment, as well as the electrode therapy.
I had my first infusion of the immunotherapy – nivolumab, marketed as Opdivo – on Friday. It was all plain sailing until right at the end, when I had a slight allergic reaction which saw my chest tightening and caused much coughing. Nothing a shot of benedryl couldn’t sort. I’ll be having these every two weeks from now on.
Electrode therapy – rather confusingly marketed as Optune – will start in May, allowing my sore and increasingly hairless scalp time to recover from radiotherapy.
So I’m all set. A full array of ‘banderillas’ that I and the army of charming medics helping me are throwing at TEF. The plan is to wound it, lengthening the time I have as more banderillas come on to the market – including the sword, or ‘estocada’ – I’ll have great pleasure in plunging into TEF during our final dance. Opdivo may turn out to be the estocada, or one of the other new treatments.
I miss London and my fabulous family and friends very much. Your emails, photos, gifts, messages, and now even visits, are hugely welcome. My sister – all hail to the new director of Tate Modern! – is with me this week. Many years ago she asked me to cut her hair, while I was staying with her at Cambridge. I gave her what I thought was a very chic short cut. It’s taken 37 years for her to return the favor. My hair started falling out last week and having clumps of over-dyed tresses fall out all over the place is really not nice. Last night Frances snipped away and hey presto, twins we are again. She even said I looked like scary lady from House of Cards. Sibling love can be very blind at times.
All this is good. As was my weekly meeting with Dr Silverman, the super-hero managing my radiotherapy. I’m exactly half way through the initial six week radio and chemo program. Check out Ed’s pix to see me and my mask. I asked Silverman to tell me to stop googling, as it tends to bring me down… and yet I’m drawn irresistibly to researching more aspects of my disease. He paused. Then explained that because I’m unusually young to have this condition, I’m in much better shape than the majority of people he sees. My body is able to tolerate the treatment (apart from an on-going cold, I really do feel fine), and this, together with the other positive points I have (size and location of tumor, excellent surgery, no regrowth to date) means I have every reason to feel good.
And I do. x

Re You Know What

I’m overwhelmed.
Every day I wake up to beautifully crafted, heartfelt and extraordinarily loving messages.  I draw great strength from these. But I’m overwhelmed and can’t keep pace. Too many years in consultancy, plus very good parenting from the very best parents, mean I can’t cope with being slow and bland with replies.
I know you know that, but I want to state on the record that I’m sorry.
It’s all the fault of T.E.F.  That’s the name my great pal Julia and I have conjured up for the dying mass inside. The Evil Fucker.
The grey faceless soldiers have been replaced with the sun. Weather Report’s Birdland and All That Jazz leads me to see a red target when I close my eyes under the mask. We all see it under the real sun. And for me it’s burning away, every day, at 1pm ET. And it’s doing what the sun does, giving life to me while killing TEF cells. All hail.
Enough of my incoherence. I only want instrumental music under the mask at the mo, while I eat words when freed. My very dear friend Alex Harvey is gifting me a poem daily on Facebook. Each is providing sustenance to a place in my head and my heart that TEF cannot even get a temporary visa for. But this is my favorite so far. It’s ‘Snow’ by Louise Macneice. The sun I stare into every day is so spiteful to TEF and so gay to me:
The room was suddenly rich and the great bay-window was
Spawning snow and pink roses against it
Soundlessly collateral and incompatible:
World is suddener than we fancy it.
World is crazier and more of it than we think,
Incorrigibly plural. I peel and portion
A tangerine and spit the pips and feel
The drunkenness of things being various.
And the fire flames with a bubbling sound for world
Is more spiteful and gay than one supposes–
On the tongue on the eyes on the ears in the palms of your hands–
There is more than glass between the snow and the huge roses.
TEF can’t match poetry. And it can’t beat perhaps another weapon in my arsenal. Turns out I’m a weeble, aka popular 1970s toy. However hard you try to knock it down, it bounces right back up.
PS. Still feeling fine, still waiting for funding, still patient, and still being a good(ish) patient.

Mr. Jagger Joins the Team

A good conversation with a Doctor when you have a horrible condition is one where he says: “You are in the best possible state at the moment.”
Five days into radio and chemo, and that’s what Dr Silverman at NYU said to me today. He showed me images of my brain and the area where the tumor was. The surgery I had was pretty much a total resection of the tumor. Latest MRIs show no growth. The two hours in donut machines last week were worth it.
I haven’t experienced any side effects as yet. But I’m under no illusions – exhaustion and nausea and all sorts of unspeakable things that require much time in the bathroom – are more than likely to hit mid-way through treatment.
I’m home now, sitting at the kitchen table while friends and family cook up another amazing feast, feeling happy. Today’s meeting was just so good, coming after a weekend when I was down. I’d entered into the online patient support community, and came away feeling it should have its own health warning attached.
We are still waiting for the funding for the immunotherapy, hoping to have a first infusion end of this week or early next.
And now there’s another treatment to add in. This would start after radiotherapy, and creates electric fields that slow and stop cancer cells from dividing. A trial to see if this is effective for people newly diagnosed with the kind of brain tumor I have was stopped at the end of last year because the results were so good. It will take 9 months and require a lot of hats, headscarves, wigs, but I’ll be able to live normally.
Today I chose to burn through Gimme Shelter as my men – Chris and Shmidt – zapped those outrageous invaders. It’s just a shot away… but a much bigger shot at the moment than it might have been.