Back in the last century, I was at home in San Jose. I was enjoying a little romance and when I lifted my head to gaze into my true love’s eyes, I felt a shock of lightning and the world started spinning. I felt very ill but I didn’t tell anyone and got back to my romance.

A few years later, I was fixing the garbage disposal. I was lying under the sink and when I lifted my head to see the pipe, I felt that same shock of lightning. Like an axe handle to the side of my head. The room span. It felt like I’d had one bottle of vodka too many. Like when you get off the spinning Waltzer fairground ride you should never have ridden in the first place.

I discovered that I could stop and start the spinning just by moving my head a few inches to the left and I managed to finish fixing the garbage disposal without passing out.

This time though, I went to see Dr Griffith.

“Oh, it’s just vertigo. If you like, I can put you in this chair and spin you around until you puke. You’ll feel much better.”
“Er. No thanks, Doc.”
“Oh, OK. Probably nothing anyway. Let me know if you ever want me to spin you around in that chair!”

Twenty years later, I still get this vertigo when I try to fix a curtain rail or hang a picture but when it happens, I know how to stop it now. Is it a symptom? Who knows?

Another year went by and I started getting this itchy feeling in my legs. I say itchy but… Imagine a swarm of African Fire Ants crawling up and down your legs all night. The only way to stop the itch is to march frantically up and down the bedroom while rubbing your legs. If I stop the marching, the ants come back.

I went to see Dr Griffith again.

“It’s probably an allergy. Try some camomile lotion.”
“Could it be Restless Leg Syndrome?”, I asked.
“It could be malingering. I’d stay off The Google if I were you.”

The itching stopped after a week or so anyway.

The next incident was about halfway along our 150-mile drive to Fresno to collect our lovely new puppy. My Little Clown and I stopped on the way to get a sandwich and as we walked to our table, I said “Ooh. I feel a bit dizzy. I need to sit down.” Jazz told me that I passed out and then went into a kind of spasm with my head in my sandwich for about 30 seconds while she cried. The staff and customers in the crowded Subway restaurant walked past my 13-year-old daughter and watched her cry while her dad had a grand mal seizure on the table.

We were nearly in Fresno though so we continued to Rusty the Cockapoo Breeder’s house to collect the Best Puppy in the World and drove home without incident. When we got home, I went to see Dr Griffith again.

Dr Griffith said, “Oh. Grand Mal seizure. That could be serious.” He shone a bright light in my eyes and asked me a few questions. “It’s probably nothing. Let me know if it happens again”, he said.

Fast forward a few years to a life in another country and I started to smell phantom smells.

“Is anyone making toast?”
“No, dear.”
“Do we have new flowers?”
“No new flowers.”
“Are you making my favourite soup?”
“I’m not.”

We thought about going to see the doctor but about that time, the government said we had to stay indoors because of COVID and we definitely shouldn’t go to the doctor’s unless it was super-urgent. Eventually, I got COVID and all my smells went away, phantom or otherwise. I forgot all about it for a year or so.

I’ve been a Sir Ernest Shackleton fan since I visited his grave in Grytviken, South Georgia in 1984 and I have long been an admirer of his jumpers (AKA sweaters) so I got myself one. It smelled of lanolin and dead sheep.

If you are an old-time explorer on a voyage to the South Pole, it’s probably fine if your jumper smells of lanolin and dead sheep but my wife didn’t like it and she made me leave my jumper outside. A few days later though, the smell came back.

“Did you bring my jumper in?”
“No, it’s still outside.”
“I think I should call the doctor.”

Smelling flowers and delicious soup is one thing but smelling dead sheep all day long is much less pleasant and I suspected something might be up. I called the doctor to make an appointment, and she said “Oh. That sounds serious. We can book you in for tomorrow morning.”

Morning comes and I go to see my new doctor.

“Phantom smells etc…”, I say.
“Hmm. Never heard of that”, the doc says.
“The Internet says it’s either diabetes or a brain tumour”
“Well, let’s do a blood test for diabetes then and hope it’s not the other thing.”
“Let’s hope!”, I agreed.

I was on my way home when she called me to say “I asked my colleague and he said you should have an MRI. I’ve booked you in for Monday.”

Monday comes. The dude operating the MRI was brilliant (they always are). Lots of jokes and he explained how it all worked. “Are you allowed to look at the results?” I asked. “I am allowed”, he laughed. “But I’m not allowed to tell you!”

As I was walking home, the radiology department called me. “Can you come back tomorrow? They need to do another scan with contrast.”

“Uh! Oh!” I said.

After tomorrow’s scan, we met our neighbours at the Grain Barge for a beer on the way home from the hospital, and my doc called me while I was there.

“Are you somewhere you can talk, Mr Clown?”
“I’m at the pub. I don’t mind if you don’t mind.”
“Are you with someone?”
(uh! oh!) “I’m with my wife.”
“I’m sorry, Mr Clown, but you have a brain tumour. I don’t know any more than that but someone will call you soon to make an appointment with the neurosurgeon. kthxbai.”

Mrs Clown made that noise that Iranian women make when a national hero dies.

Do you have any idea how slowly two weeks pass when you are waiting to hear surprises about your brain tumour? Anyway. The neurosurgeon says…

“It’s a glioma. Three lobes. Size of two golf balls. I can remove it if you like. You’ll have the surgery while you are awake so I can prod your brain to see which bits are safe to chop out.”
“Will you remove all of the tumour?”
“No, just a little bit.”
“No thanks then.”

The Internet says that if your tumour is in three or more lobes, it’s called a gliomatosis cerebri which is a 1 in 10,000,000 diagnosis. It’s just me and Kristina who have one, as far as I know.

Fast-forwarding through the next couple of years:
I refused all treatment. My three lobes grew to six lobes, two hemispheres and a corpus callosum. My sense of taste broke too but then it got better.

Here I am two years later and I had my first official seizure at Christmas. Then another. Then another three on subsequent days. I was awake for all of these seizures. Each time, I drifted in and out of consciousness while my Little Clowns tried to talk to me.

Mrs Clown gave me one of those quizzes you give to people with dodgy brains. I got zero points for prime ministers and the name of our street but I almost got my birthday right and I remembered some of my family’s names. I got my favourite singer-songwriter though!

We do a similar quiz after every seizure. Sometimes I have no language at all, but it always takes a while for my speech and memory to come back. I can understand everything that is going on around me — I just can’t talk about it.

A quick aside for the philosophers among you. Philosophers argue over whether language is required for thinking. When I come out of a seizure, I can think very clearly even though I have no language. I understand everything that is going on but when I try to talk about it, it all comes out garbled. The thoughts I have in my seem like words until I try to speak them. I even tried writing them down last time but although my handwriting was lovely, I didn’t manage to write any actual words — just a long stream of random letters. Inside my head, it feels like I am thinking in words but when I try to share them with other folks, they just come out as nonsense.

My next seizure was a bit more dramatic. I didn’t know anything about it until I woke up and everyone was sitting on my bed at two o’clock in the morning.

Me: “Why is everyone sitting on my bed? Is it because you love me very much?”
Little Clown: “No, it’s because you had a seizure. You were out for 25 minutes. We thought you were dead. The ambulance will be here in a minute.”

The ambulance folk were very nice and they did all their tests but we decided we’d rather go back to sleep than go to the hospital. We walked down to the hospital the next morning and they gave me a CT scan and blood tests, then kept me overnight for observation.

We had an appointment with the Lovely Oncologist soon after that and I surprised her (and Mrs Clown) by asking to have chemo. I started it a few months ago. It’s just a pill and probably a bit milder than the chemo you are familiar with.

After the first round of chemo, I had another seizure. This time, the ambulance folk were already there when I woke up and they were even nicer than the previous lot. After some tests, I gave them a tour of our house (we have a lovely view of the harbour), and then I had my first-ever ambulance ride. I didn’t stay the night this time but they did their tests and we came home. Back to the chemo.

So that’s where we are now. My tumour symptoms are creeping up a bit and my memory is starting to wane. I read somewhere that you can plot on a chart the number of words that Agatha Christie used in each of her books to track her decline. That’s about where I am. I have another year to go with my philosophy degree so let’s hope I don’t have to remember too much or use a lot of words.

Round three of the chemo was a bit more unpleasant than the previous rounds but it is all tolerable as long as I remember my bran flakes. I just had an MRI to see if the chemo is doing any good but apparently the NHS only has one radiologist in the whole country so I will have to wait a month to get the results.

Let’s hope they are happy results!

“Whatever you do, do not Google for information about your tumour.”

The reason is you’ll find very little good news about gliomas on the web. If you are the kind of person to whom this advice makes sense, you should stop reading because there is no good news here either.

On the other hand, if you are the kind of person who’d rather know, so you can make plans, read on.

When there is bad news in my future, I want to know it. I understand that other people would rather not, and would rather leave their care in the hands of their medical team. That’s fine. You do what’s right for you and I’ll do what’s right for me. But if you want to learn a little about gliomas, read on.

After I was diagnosed, I spent several hours every day researching on The Google. I read every scientific paper and trial result that I could find.

About a year ago, I decided I didn’t want my tumour in my head all the time (so to speak) and made a conscious effort to stop looking for information. I still think about it every day, but it doesn’t dominate my thoughts like it did before. Now and again though, it sneaks back into my consciousness, and I feel the need to write about it. So here I am. I learned a lot in my research and feel compelled to write some of it down before I forget everything.

What is cancer anyway?

As you probably know, cancer is not an external invader. It’s a bunch of your own cells that have malfunctioned. There’s usually a DNA copying error or mutation that causes a clump of cells to grow and divide more than they should. Errors like this occur all the time and our immune system has a mechanism for killing cells that misbehave. A message is sent to the broken cell — TIME TO DIE BROKEN CELL — and that’s usually the end of it. However, sometimes cells accumulate more mutations. For example, there might be a mutation that says ‘Ignore the TIME TO DIE messages.’ Another mutation might say ‘Forget you are a breast cell. Go hang out in the lungs for a while.’

Cancer is not just a single disease; there are over 200 kinds and they are all different. They are usually classified according to the body part where they started (e.g. breast cancer, lung cancer), or the kind of cell they started from (e.g., squamous cell carcinoma, melanoma), or the name of the mutation that started the ball rolling (e.g., BRCA or ROS1) or even all three together. Although they have a lot in common, breast cancer and lung cancer are different diseases and if your breast cancer spreads to your lung, it’s still breast cancer.

When they are diagnosed, most cancers are given a stage that indicates how much they have grown and spread. The exact details of staging differ from cancer to cancer but, roughly, stage 1 cancer is contained within the organ where it started while stage 2 and 3 cancers are progressively bigger and detectable outside the original organ. If a cancer has spread to other organs, it is stage 4 and often referred to as metastatic.

The original tumour is called the primary tumour. Tumours that appear away from the original organ are called secondary tumours (or metastatic tumours or, among friends, just mets). For example, if you have metastatic lung cancer and it spreads to your brain, it’s still lung cancer. The original tumour in your lung is the primary tumour and the secondary tumour in your brain is called a brain met. If the tumour started in your brain, it is a primary brain tumour.

What kind of tumour do I have?

There are dozens of types of brain tumour. I have a glioma. It grew from a mutated glial cell.

There are two main kinds of cells in your brain. There are the neurons that do all the thinking and there are the glial cells. Glial cells (literally, glue cells) are like the infrastructure of your brain and they provide nutrients and support to neurons. A tumour that originates in glial cells is called a glioma. Cancer in neurons is rare in adults, and most brain tumours are gliomas.

Unlike other kinds of cancer, gliomas are not given a stage — they are given a grade. The grade of a tumour is a measure of how similar it is to normal cells. A grade 1 tumour looks a bit different from a normal cell and grows more than it should. Grade 2 tumours look even more different and grow a little faster and so on until grade 4 where the growth is out of control and the cells look like undifferentiated mush instead of brain cells.

Grade 1 tumours can usually be removed by surgery and that’s the end of it. Higher-grade tumours usually come back, even if all trace of the tumour is removed. They are typically treated with surgery, radiation and chemotherapy.

Grade 2 tumours usually transform to a higher grade eventually and higher-grade tumours are considered terminal. Some patients have surgery or chemo multiple times to fight them back but gliomas can rarely be cured completely.

Tumours in most parts of the body are sometimes described as benign (not cancer) or malignant (cancer), but brain tumours are rarely described that way because even a non-cancerous tumour can kill you. If you have a benign tumour on your wrist, it might look ugly but it can get as big as a grapefruit and still won’t kill you. A benign tumour the size of a grapefruit in your brain will kill you.

Radiographers can sometimes guess the grade of a tumour from an MRI, but it’s usually confirmed by a biopsy. The biopsy might be done as part of a craniotomy where most of the tumour is surgically removed at the same time, but I had a needle biopsy. The neurosurgeon drilled a small hole in my skull and extracted a bit of tumour to analyse it. My biopsy was inconclusive, but my tumour is probably grade 2 or 3. I have a very nice titanium plate now though.

There are different kinds of tumour too. The three mains kinds are, in order of nastiness, oligodendroglioma, astrocytoma and glioblastoma. Mine is probably an astrocytoma, but again — inconclusive.

Gliomas can be circumscribed or diffuse. Circumscribed means that the tumour has well-defined borders. A circumscribed tumour causes problems when it grows large enough to put pressure on the surrounding brain. This is called mass effect. The tumour squishes the brain and causes malfunctions. By contrast, a diffuse tumour infiltrates the brain. My tumour is diffuse. I imagine an ink drop spreading through water.

When I was first diagnosed, my neurosurgeon said my tumour was the size of two golf balls or half a hemisphere. My latest MRI says it is about twice that size now and has spread to both hemispheres. My next MRI is in a couple of weeks and I am not expecting any good news. Good news would be: my tumour is still the same size.

Is my tumour treatable?

Several treatments for gliomas can extend a patient’s life, but gliomas almost always grow back and eventually the patient dies — but that might be years later. For circumscribed tumours, surgery relieves the immediate crisis, and radiation and chemotherapy postpone the day that the tumour grows back. But there is no evidence that surgery is helpful for diffuse tumours. Chemotherapy might be helpful but chemo really sucks and might not be helpful at all. There’s no evidence either way. My tumour is much too big for radiation.

What’s the prognosis?

The correct answer is that no one knows. Unless your demise is imminent, the best your oncologist can give you is an average from patients from the past who have a similar diagnosis. They don’t usually make predictions.

On average, most patients with a grade four glioma survive around eighteen months. The five year survival rate is around 5%. For grade three, it’s 25% and for grade two it’s about 50%. These are averages — it’s not uncommon for glioma patients to survive much longer than this, but if you are a planning person you should plan for less even if you hope for more.

Until a couple of years ago, there was a diagnosis — gliomatosis cerebri — if the glioma was in three or more lobes of the brain. Mine is in six. The incidence of gliomatosis is one in ten million so I am kind of special. I have a special friend in Canada, also with gliomatosis. We are special together and talk nearly every day. The prognosis for gliomatosis used to be the same as for grade 4 tumours. But gliomatosis is no longer given as a separate diagnosis — so maybe we are no longer special?

The numbers given for survival start from the day you are diagnosed. I was diagnosed in March 2022 but I have an array of undiagnosed of symptoms going back many, many years.

In 2014, I had a grand mal seizure. I had restless leg syndrome about ten years ago. I had serious, serious vertigo during a moment of passion in 2000. My one and only confirmed symptom — phantom smells — began about two years before I went to the doctor to see whether I might have a brain tumour.

So when did my clock start ticking? Do they backdate the survival time if the diagnosis was delayed?

The bureaucracy of dying

When I was first diagnosed, I thought it important to be prepared for an early death. I got all the paperwork done: wills, powers-of-attorney, a map of where all the treasure is buried, etc. I planned my funeral and made my funeral playlist.

The immediate period after a death is very stressful for the survivors because 1) The most important person in the world has just died and 2) There are tons of difficult decisions to be made and bureaucracy stuff to take care of. Burial or cremation? Which coffin? What flowers? How do I get access to his pension? How do I pay the electricity bill? Widows are probably the least equipped people in the world to deal with these issues. Taking care of them ahead of time just makes so much sense.

There’s a brilliant site — GetYourShitTogether.org — that has checklists you can use to prepare. Someone will thank you for it one day. If you live in Bristol, have Dee at Divine Ceremony organise your funeral. Dee will make you smile more than you thought possible. She’ll also drive you to the cemetery in a white car and bury you in a cotton shroud.

I think our society has a huge phobia against talking about these topics, and this causes real harm. Like, maybe, if I think of myself as a widow or — **shudder** — the deceased, I will jinx it and the Grim Reaper will visit even sooner. It won’t. Get your shit together. Someone will thank you for it.

After a while, talking about death loses its sting. At first, everyone recoils at the very suggestion that there’s someone dying, but after a while you learn to talk freely about the aftertimes. It’s much healthier. We can laugh about it now.

Afterword

I got a bit lazy with this post and a few weeks went by. Fast forward a bit and I’ve had my MRI and I am waiting for the results. I had a bit of an uptick in symptoms over Christmas and it’s all suddenly urgent again now. I really need to get my shit together.

How exactly do I transfer a 401k from California to the UK when the USA does not recognise a UK power of attorney? Can I pass my US social security to Mrs Clown? My Navy pension?

Why do they make it so hard?

If it’s only a short time, like a few months, you make plans for your family, get your will and power of attorney done and try to make the most of the time left.

If you have many years to go, you probably make different plans. Maybe you think about early retirement and go live by the sea with your philosophy books and a constant supply of real ale. Or maybe you make a bucket list and go see some elephants in Africa or drive a muscle car in Death Valley.

But what should you do if you don’t know how long you have? Maybe you just carry on with your everyday life. Maybe you write some code, do your shopping and walk to the pub in the evening.

When I was diagnosed with a brain tumour, I was determined not to ask for a prognosis and was ready to take whatever fate had in store for me. I have had three people close to me who died of the same tumour that I have and they all died quite quickly so I assumed that I would too. But I am still here.

Neurosurgeons and oncologists can’t really predict how long you are going to live. All they can do is look at the history of people about your age with a similar tumour of a similar size. Then they take a kind of average and add a few months for good luck.

Most people with a brain tumour join an online community and the first thing they tell you is “Whatever you do, don’t google your tumour.”

Their motivations are sincere — if you google, you’ll find bad news and most people don’t want to find bad news — but I think it’s terrible advice and said so on my blog. I think most people would rather know the news, even if it is bad news. Most people are going to google anyway and it’s better to tell them how to google than tell them not to google.

Your prognosis affects your treatment choices too.

Some people, if they don’t have long to live, will ask for extra chemo or some experimental treatment or have magnets put on their heads. Not me. I would rather go and sit on the pontoon with my little dog and watch the ducks on the harbour. If you have chosen extra treatment, that’s fine. Good for you. But it’s not for me.

What about a longer prognosis? If I have two years left, do I want to spend one of them puking? Will it make me live longer? Who knows? I’ve made it two years without chemo. If I’d had chemo would I make it to three? Or fifteen? Who knows?

Anyway. Here I am two years later, still going strong, and I wish I had asked for a prognosis back at the start. In fact, I plan to ask my oncologist when I see her in a couple of months. I’m still ready to face whatever comes along but I wish I had a bit more information to make some proper plans. If I have a long time left, I’d like to go live by the beach somewhere or maybe in the tropics. If I don’t have long, I’d rather not uproot my family. I’d rather make some plans and know that they’ll be OK.

In The Quiet American, the main character, Fowler, is approaching the end of his life and he settles down with a Vietnamese woman who prepares an opium pipe for him every evening. I would be down with that.

Or with a Maltese woman buying me boozy milkshake at Fontanella in Mdina. As long as they serve real ale and I can bring my philosophy books, I’ll be OK.

A pipe of opium, or the touch of a girl who might tell you she loves you.
And then, something happens, as you knew it would. And nothing can ever be the same again.

The Quiet American — Graham Greene

I had requested a second opinion from someone who was specifically NOT a surgeon on the grounds that surgeons are predisposed to recommend surgery (just like car salesmen are predisposed to recommend that you buy a car). My surgeon seemed offended.

“NOT a surgeon, eh?”.

He raised an eyebrow. Oh, well.

We were expecting to see Dr XY (a rather stern-looking male doctor when we stalked him online) but when the door opened, we were greeted by a smiling Dr XX. We were not used to smiles from doctors in recent weeks and they caught us by surprise.

Dr XX started by asking about my anti-seizure medication. I told her it was making no difference and was giving me unpleasant side effects. I told her that, from my research, what I was experiencing didn’t sound like a seizure anyway — though 3 nurses and a neurosurgeon disagree with me.

“Hmmm…” she said. “It doesn’t sound like a seizure to me either. I’ll book you an appointment with the head of epilepsy. He is an expert in brain tumour-related epilepsy (BTRE). He’ll know. He’ll probably do an EEG.” (Mrs Clown has been asking for an EEG for weeks).

Score One Point for Dr XX.

Dr XX next started to talk about scans and tumours. I paused her and suggested that, instead, I tell her what I know and what I think we should do and then ask her my questions. No point in her telling me what I already know. “Sounds like a great idea!” she smiled.

Score Two Points for Dr XX.

(paraphrasing) I have a diffuse low-grade glioma in three lobes etc etc. Prospects for surgery are bleak and I don’t think I want it. Radiation is not possible. Chemo requires a molecular profile which will require a biopsy. The data on PCV if I have the 1p19q codeletion looks promising.

My question: is the chemo likely to do any good? If not, there’s no point in even doing the biopsy.

Smiling Dr XX (paraphrasing again):

You described your condition exactly as I would have. I have nothing to add and your suggested treatment path is exactly what I was going to recommend. I think surgery would be a bad idea for you and radiation is not possible. 

The biopsy is easy and low risk. No reason not to do it and you seem like the kind of person who prefers to have more information rather than less. PCV is usually given as an adjuvant therapy after surgery. There is no clinical data on using it without surgery but a healthy young man like you should be able to tolerate it and, if you have the codeletion, I think the chemo will be helpful. If you don’t have the codeletion but have the methylated MGMT you might consider TMZ. If not, you will have lost nothing but will have more information about what to expect.

If you like, I can present this to the multi-disciplinary team and see what they say.

“Please do!”, I said.

Score Three Hundred Points to Dr XX and Gryffindor.

I asked about the other side.

What should I expect if I have no treatment at all?

Your glioma seems to be very slow growing and might have been there for years. It might be there for years to come. It’s almost certainly grade 2 now. It might transform to grade 3 and then it will grow much faster. People with your kind of glioma usually just find themselves gradually slowing down and finding cognitive functions harder to deal with. You might have trouble with speech.

Eventually you’ll find yourself getting sleepier…

…and, eventually, I’ll go to sleep and not wake up?

Exactly!

What a lovely way to go!

Dr XX said she had been careful not to sound too optimistic and I promised that I wouldn’t come back to haunt her if she got it wrong. As we were leaving, we told Dr XX that she was wonderful and that we would rate her Five Stars on Yelp (“…and TripAdvisor!” shouted Mrs Clown).

We walked home on sunshine and talked about what this new information meant.

Though nothing has really changed, this new way of looking at things certainly turns everything upside down. Maybe I’ll have time to finish my degree? Maybe I shouldn’t quit my job? Maybe I’ll outlive my term life insurance. Maybe we should make plans for a smaller mortgage. I’d like to let the information settle for a bit before I make up my mind. I have time to think now.

I spoke to K last night to see what she thinks. K reminded me that I said the last couple of months have been among the best of my life. She told me I should just keep doing that stuff. Maybe I will.

I learned later that the two dudes were old friends who see each other once a year to hang out and catch up and argue philosophy. They covered all the good topics. Is patriotism good for society? When does patriotism shade into nationalism? Is that bad? Should we encourage immigration from other cultures? One was arguing from what I will call the Daily Mail position while the other was more Guardian — though they were both smart dudes and able to address each other’s point of view intelligently and with charity and good nature.

At one point, Mr Daily Mail said something outrageous and I blew my cover by laughing out loud so they invited me to join them. Before long, Married Couple joined in too. It was a fun afternoon. Mr Daily Mail bought us all drinks and we solved many of the philosophical problems that have challenged philosophers down the ages. We were even able to classify all the lines of Alanis Morriset’s song according to whether or not they were actually ironic (Mr Afraid-To-Fly: yes; free ride when you are already there: no; rain on your wedding day: only if you are a meteorologist, don’t you think?). We also declared that the international unit of irony is the KiloSpoon.

With the irony problem solved, Mr Guardian announced a new topic.

“I’ve got one!” he said. “Imagine that you’ve just been told that you only have a short time left to live. What would you do with your time remaining?”

“Well,” I said.

“I’ve just been diagnosed with a brain tumour. It’s terminal. There is no cure but they can extend my survival time with surgery, chemo and radiation. I don’t know the tumour type yet but median survival ranges from a few months for a glioblastoma to a couple of years for an astrocytoma to about 7 or 8 years for an oligodendroglioma. I’m not dead yet so it’s probably not a glioblastoma. I just had another MRI and I should find out more next week. What should I do with my time remaining?”

I’ve been thinking about this a lot recently. Researching too. Of the dozens of papers that I have read, most say that surgery for a diffuse low-grade glioma (LGG) is controversial. The benefits are questionable, the recovery times are awful and the risks of brain damage are considerable. Still, the standard of care for an LGG is to have a craniotomy to remove the tumour and, depending on the molecular profile of the tumour, to follow that with radiation and chemotherapy. However, there are no (zero) studies that compare the outcome of surgery vs no surgery (similarly, there are no studies that compare the outcome of jumping out of a plane with a parachute vs no parachute — it would be unethical to do that study so we have to guess at the likely result).

I found several studies that compare survival times based on extent of resection (EOR). If they get 100% of the tumour, overall survival (OS) is X. If they only get 90%, OS is a bit less (and so on, for 80%, 70% etc). All these numbers vary according to the age of the patient, where the tumour is, how big it is, what the grade is and how long it has been there. LGGs are very rare anyway so the numbers involved in computing these stats are tiny and mine is the rarest tumour of all: there is only one of me.

So there seems to be a strong correlation between EOR and OS. But, hold on! Why would they only remove 90% of the tumour? Is it because that last 10% is in an important bit of brain? The bit that would kill you if they chopped it out? Maybe that apparent correlation is about where the tumour is rather than how much they are able to chop.

While we are talking about brain-chopping, how do they know which bits to chop? There’s a magical fluorescent dye that shows you which bits are tumour and which bits are healthy brain tissue. Unfortunately, it only works on high-grade tumours and we won’t know the grade until after surgery. And you thought brain surgery was easy!

There is a thing called a ‘needle biopsy’ where you can take a sample of the tumour to analyse its molecular profile without full-on surgery. But gliomas tend to be heterogeneous — different bits of the tumour will have different mutations — so needle biopsies are unreliable.

Most craniotomies are done ‘awake’ these days so the surgeon can talk to you while he chops. This allows him to prod a bit of brain and see what it does.

Hmmm…. This bit makes his right hand twitch. Let’s not chop that bit.”

They also give you little tests like:

“Count to ten for me.”

“One two gargle bloop sslllllpp”

“Ah. That’s the speaking bit. We won’t chop that bit either.”

That famous philosopher, Donald Rumsfield, might point out that there are limits to this technique. The surgeon can figure out the known unknowns but how does he know which bit has Dave Gilmour’s guitar solo from ‘Shine on you crazy diamond’?

Which bit knows the capital of Iceland or the colour of my true love’s hair? There are no stats about that in the scientific literature.

I’ve yet to meet anyone who has chosen to not have surgery for a glioma. The smarter members of Smart Patients might say that’s because they are all dead. My surgeon is definitely pro-surgery (he would be, wouldn’t he?) but I need a little more evidence before I decide whether it is right for me.

Whenever the topic of Steve Jobs comes up on Smart Patients some members get really angry that such a smart man would try to cure his cancer by drinking vegetable smoothies. Do they not wonder whether perhaps Steve Jobs knew exactly what he was doing and he knew that chemotherapy would not have cured his cancer either? And that vegetable smoothies are a lot more delicious than chemotherapy.

He will die one day. But so will everyone else.

I know one cancer patient who refused treatment and is now driving around America in a van having the time of his life. He insists that ‘You are not “refusing” you are “choosing.”‘

He is going to die one day. But so is everyone else.

What it all boils down to is that I am going to have to make a difficult decision with very little data. If surgery is gonna extend my life by 9 years, maybe it’s worth a shot. If it’s gonna extend it by 6 months and I am gonna spend 9 of those months recovering from surgery then, maybe not. And no one’s really got it figured out just yet.

Lilli sent me a poem yesterday. She said it reminded her of me (though Lilli doesn’t know me in real life). I’m honoured by the comparison.

So live your life that the fear of death can never enter your heart.
Trouble no one about their religion; respect others in their view,
and demand that they respect yours.
Love your life, perfect your life, beautify all things in your life.
Seek to make your life long and its purpose in the service of your people.

Prepare a noble death song for the day when you go over the great divide.
Always give a word or a sign of salute when meeting or passing a friend,
even a stranger, when in a lonely place.
Show respect to all people and grovel to none.
When you arise in the morning give thanks for the food and for the joy of living.
If you see no reason for giving thanks, the fault lies only in yourself.
Abuse no one and no thing,
for abuse turns the wise ones to fools and robs the spirit of its vision.

When it comes your time to die,
be not like those whose hearts are filled with the fear of death,
so that when their time comes they weep and pray for a little more time
to live their lives over again in a different way.
Sing your death song and die like a hero going home.

Chief Tecumseh (1768-1813) 

Chief Tecumseh (translated as “shooting star” or “blazing comet”), led the Shawnee tribe and saw his people’s lands, culture, and freedoms threatened by the aggressive white settlements. I wonder if we are related.

PS. Nick & Duncan — my two dudes from the pub — if you are passing by, please leave me a comment. I’d love to hear from you!

In this post, I will investigate how the way we talk to people with cancer is different from the way that we normally talk to people and I will suggest some remedies for this unfortunate situation. Finally, I will reveal that I have a brain tumour and describe how I am dealing with this unhappy fact.

In 1991, my girlfriend, Rita, found that her memory was starting to fail and a visit to the hospital revealed that she had a glioma, a type of brain tumour. I was living in London at the time and Rita’s Maltese parents, Edward and Maryanne, came to live with me and to help care for her. They were soon followed by a long procession of visitors. There were friends and neighbours from Malta, colleagues from Rita’s work, countless aunts and uncles from Long Island and eventually Rita’s sister, Georgina, whom you may know.

Some visitors, close friends especially, would just settle right in with a hug and a how are you? and then just chat away, sharing tears and laughter as if they were just old friends hanging out together for the first time in a while.

Other visitors seemed to be there out of the unwritten duty that requires everyone to pay their respects to cancer patients. They know they are required to visit but they don’t know what to do when they get there and behave accordingly. Their eyebrows furrow to the fullest extent and they incline their head and tell you how sorry they are. Then they tell you about their cousin who died of the same cancer last year or about the other cousin who cured their cancer just by eating ground up asparagus spears.

I don’t blame this second category of visitors. I’m the same way when I am in the obligation-to-visit-cancer-patient situation. Now that I am on the other side of the dialogue, so to speak, I thought it might be useful to share some tips on what seems to work and what doesn’t.

If we are old friends, we can just hang out like old friends do. We don’t have to talk about cancer at all if you don’t want to. Don’t feel obliged to mention it like it is an elephant in the room that demands to be mentioned. I run an online community for patients and their families — Smart Patients — and I can’t tell you how many people complain that they are sick of talking about cancer and would rather talk about anything else. Not me though! I love talking about cancer!

I’m more than happy to tell you in excruciating detail what kind of cancer I have, why cancer happens and what my prognosis is (not at the moment though because I have no idea as yet). I might shed a few tears while explaining but I’m OK with that as long as you are. You can cry too if you like. If that’s not your thing, that’s OK. Let’s find something else to talk about.

I like talking about beer, politics, philosophy, art, snowboarding and travel. I like talking about most things actually. I’ve been lucky enough to live a rich and full life and have a lot of stories. Ask me about the time I ran out of money in Tahiti or the time I was almost eaten by a Komodo dragon. Ask me about arriving on Bora Bora in the pouring rain in the middle of the night with nowhere to stay or being chased by a leopard seal on South Georgia. Ask me what it is like to fire a twin-barrelled 30mm anti-aircraft gun at 20 rounds per second or a wire-guided torpedo from a ballistic missile submarine. Or tell me one of your stories. I love stories! People don’t tell enough stories.

One pleasant side effect of having a terminal condition is that my wife and family let me sing Elvis songs in the kitchen now. They’ll even talk philosophy with me occasionally. I had a lovely discussion with Mrs Clown and one of the Smaller Clowns about the Ship of Theseus yesterday. Mrs Clown confessed that she didn’t really understand philosophy before and, now that she does, talking about it is quite fun! I have an essay due on equality soon. I’d love to talk about that!

I have a few pet peeves. If you have a miracle cure for cancer, I’ll listen politely. When you tell me how cutting potatoes out of my diet will cut off the cancer’s supply of starch, I’ll smile and thank you the first couple of times. But the third or fourth time you swear that your aunt cured her cancer by drinking malt vinegar I’ll start to get uncomfortable and try to change the subject. Same deal for more conventional cures. I’m happy to hear your tips to ameliorate chemo symptoms or about some new clinical trial that I should look into. If your suggestion fits in with my plans, I’ll follow it gladly. If it doesn’t, I won’t. I hope that’s OK with you.

I don’t know exactly what my prognosis is yet but I am pretty well informed about the range of possible outcomes. As an occasional Stoic and frequent rationalist, I find it useful to know the median expectation and the worst-case etc. I understand that other people find it comforting to focus on the best possible outcome but I don’t. Not at all. It doesn’t bother me to hear that your uncle survived 53 years with his brain tumour and I am happy to listen but I don’t find it helpful. People tell me I have to have hope but I don’t actually. I have to have a realistic idea of what I am facing so that I can plan accordingly. If you find it helpful to have hope, don’t let me take that away from you, but I’ll deal with this my way thanks!

One last peeve. One of my favourite smart patients, Stephanie, disliked any metaphors for dealing with cancer that involved violence. When someone told her that she needed to “fight to survive” or that she would “win this battle”, she would politely explain that she doesn’t think about her treatment that way. Cancer is not an external invader that needs to be vanquished. It’s a malfunction in my own body that needs treatment and care. Stephanie didn’t lose her battle, she enjoyed her life to the very end and I plan to do the same. Don’t feel bad if you forget and exhort me to fight but don’t be surprised if I gently explain that I don’t feel the same way.

That’s all I can think of for now. I assume you already know about the Ring Theory. Go read about it if you don’t. Quick summary: the patient is in the centre ring, close family is in the next ring, and everyone else is in the outer circle. You are allowed to complain from an inner ring to an outer ring but not from an outer ring to an inner ring. I’m fairly robust and don’t really mind listening to your complaints but The Clown Family won’t enjoy it at all. They will need your support.

I’ve only been dealing with this cancer thing for a week and I reserve the right to change my mind once I have more experience and more information. I’m open to the full range of possible outcomes including the oncologist telling me that it was all a mistake and they had the MRI results upside down. I’m not expecting that though. I’ll learn more on Wednesday.

Feel free to ping me if you want to know more or if you want to hear one of my stories.

The neuro-oncologist said “Hmmm… Doesn’t sound like a seizure to me. I’ll send you to a neurologist.“

A seizure is a sudden, uncontrolled burst of electrical activity in the brain. It can cause changes in behavior, movements, feelings and levels of consciousness.

Mayo Clinic

The neurologist said “Nope. Not seizures. But you can carry on taking the anti-seizure medication if you like.” I carried on taking the medication until I forgot it when we went on holiday to Tenerife.

It’s a year later and I am finally having seizures. They are usually at night or in the morning so you probably won’t see one. They always start with a massive electrical storm that feels like a nightmare where I am on a fairground ride that spins me around too fast before it crashes.

Last night, I knew what was happening so I was able to wake Mrs Clown and ask for help.

I lose my language every time but I am perfectly lucid and able to understand what is going on (remember this the next time a philosopher argues that consciousness depends on language). I can think clearly but I don’t know any words. I remember everything.

Mrs Clown always gives me one of those quizzes where you test the patient for alertness. I usually get my name right — and Bob Dylan’s! — and I was quite close with my birthday. I forgot the dog’s name though… and my children’s. Last night I remembered that my address was “Crescent and something. Two syllables. Starts with a ‘W'”.

Eventually, my words come back and sometimes the pounding headache goes away too. The rest of the time I am fine except for a few misplaced nouns. Last night we were able to get back to sleep and everything was fine in the morning.

You put my feet back on the ground
Did you know you brought me around
You were sweet and you were sound
You saved me

Somersault, Zero 7

I don’t know how long this will go on for. It might end tomorrow or next year. Maybe it will be another 20 years. Who knows?

I have a glioma. It’s probably an astrocytoma but my biopsy was inconclusive. It’s probably low grade but it might be grade 3. I have had no treatment.

There have been no significant improvements in glioma care since PCV in the 1960s and TMZ in 1999. Radiotherapy has got a little bit better and surgery has improved incrementally but there have been no drug breakthroughs in over 20 years. Gliomas are stuck with PCV & TMZ which are essentially chemo while every other kind of cancer is getting breakthroughs in immunotherapy and targeted therapy.

Targeted therapy typically aims at a specific receptor or enzyme or protein and causes a cell to change its behaviour while chemo typically just kills everything and hopes that the cancer cells die faster than the healthy cells. We’ve been dreaming of a targeted therapy that can cross the blood-brain barrier AND target a receptor on glioma cells since forever.

There are three main kinds of glioma: oligodendroglioma, astrocytoma and glioblastoma. None of them are very nice but glioblastoma is particularly horrid. Almost all clinical trials for gliomas are for glioblastoma.

https://www.smartpatients.com/trials?search[keywords]=brain+tumor

I know of only two interesting trials for low-grade gliomas. One is for vorasidenib, which is a targeted therapy.

https://www.smartpatients.com/trials/NCT04164901

Vorasidenib targets the enzyme IDH.

IDH (Isocitrate dehydrogenase) is an enzyme that is involved in the cycle that turns nutrients into energy. In one step of the cycle, IDH is supposed to generate alpha-KG (alpha-ketoglutarate) but, if you have a particular mutation (IDH1-mt) in your IDH1 gene, it generates 2-HG (2-hydroxyglutarate) instead. Besides messing with your metabolism, 2-HG is thought to mess with your DNA, causing lots of knock-on mutations which lead to tumours.

IDH1-mt is diagnostic for two of the three main kinds of glioma: oligodendroglioma and astrocytoma (but not glioblastoma) and vorasidenib has been shown to improve survival of low-grade glioma patients to an extent that is frankly miraculous. So miraculous that they terminated the trial and gave the drug to all the participants.

https://www.theguardian.com/science/2023/sep/17/these-patients-do-not-have-time-families-in-uk-demand-access-to-new-drug-that-slows-brain-tumours

I hope I survive long enough for it to be approved in the UK.

I won’t keep you in suspense — the surgery went well — but there is a lot in the video that plucks at my heartstrings.

Laura is an absolute delight to listen to. She holds nothing back — sharing her darkest fears — but she finds a joke in every dark corner, and suddenly we are all laughing again. She is happier than you have ever seen someone who just had a cancer diagnosis.

In today’s video, they tell us about the months since Laura’s surgery, and how they have been so much harder than they expected.

Laura had lots of pain, of course, and couldn’t get around for a long time. But she lost her speech entirely, and it took weeks to come back. Her speech is still not quite right four months later.

It’s not quite on the same scale, but I lose my speech like this every time I have a seizure. I can’t speak at all at first, and it takes a while before I can get a word out. I can mostly speak after about half an hour, but I am never entirely back to normal, not even now.

The bit that really struck me, though, was how she dealt with everything.

Laura had it much harder than me, and there were times when she wished she hadn’t had surgery at all. My neurosurgeon wanted me to have surgery, and I said no. I wonder how things would have gone if I had had the surgery and Laura had skipped it.

Laura had a horrible time with depression, and there were times when she wished she was dead.

“I felt like I was in the tomb… I felt only darkness.”

But by the time she is telling this story, she is making jokes and laughing. Laura could get her darkest thoughts across with a laugh in her voice, and I am grateful for that.