You are currently browsing the category archive for the ‘My Little Cancer’ category.

My MRI scan happened on Monday at 07:30. It was no problem making the early slot as I tend to wake these days not later than 4am. Probably some drug side effects. In this, the heart of summer, it isn’t any burden to shake free the tangle of night roots and just enjoy the calm. As the surrealist painter and author Leonora Carrington says: “Dawn is the time when nothing breathes, the hour of silence. Everything is transfixed, only the light moves.

Later the same day I had the results via another appointment with my OncDoc. There are two clearly-visible tumours at the back of the brain, one on either side. I’d guess the one on the left is around 3-4cm, and the other is around 2-3cm. That would put them on the larger side of the usual scale.

Two lesions far apart rules out a resection (surgery) and is less suitable for the ‘pinpoint’ or high-dose stereotactic radiotherapy method. It does leave the way clear for what is called whole-brain radiotherapy (WBRT). That will be the one for me. It has the extra advantage that it will treat the bits that are not yet visible, as well as the two above.

By the way, there’s a very high probability I will lose all my hair because of this. But as we both remarked in the car on the way home, the decision is a no-brainer. Sorry, I’ll stop it at that.

I have to get a personalised head mould made for me so I can stay perfectly still. That happens this week so I could be starting treatment as early as next week. The sessions are typical radiotherapy – daily for two weeks. Each session probably consisting of 5-10 minutes of zapping, 45 minutes of preparation and setup.

This gives me an excellent opportunity to play my CancerBingo game, in which I get the chance to include stock quotes that just belong in a Cancer blog. Today seems right for the ‘famous’ Anton Chekhov quote: “Any idiot can face a crisis, it’s the day to day living that wears you out.” Actually, it’s not his quote at all. It comes from a Bing Crosby 1954 film called “The Country Girl”, which in turn was based on a play written by Clifford Odets.

The title of this blog I borrowed from my current favourite Aldous Harding, a New Zealand folk singer with more than a little of the Gothic about her. One of her other songs mentions “Baudelaire in the afternoon.” I like me a bit of Les Fleurs du Mal. He did say: “You have to be always drunk. That’s all there is to it—it’s the only way. So as not to feel the horrible burden of time that breaks your back and bends you to the earth, you have to be continually drunk. But on what? Wine, poetry or virtue, as you wish. But be drunk.

Time for a gin and tonic.

I thought it was going to be a quiet period. I had a regular cryotherapy session over at Thoracic Park on Monday. There was evidence of infection and the op itself was a bleeder when they hit the tumour so they put me on more antibiotics. But I should know by now: there is always a place for an unexpected and extreme event in CancerWorld. Quiet life? No way. That’s not how art is made.

On Tuesday, I was home working at my desk and trying to finish the last line in an email to a customer. I became aware that I was disoriented. Couldn’t work out what the mouse or keyboard did any more. I thought it prudent to lie down until it passed. It was then that I had the seizure. The pain down my left side made me think I had a PE clot that was moving upwards. Then I lost consciousness and I’m told I experienced convulsions.

This one was a proper 999 / Ambulance moment. First time ever in all these years I’ve had to do that. By the time I came around, it was to see three Paramedics standing in my bedroom. It was off to A&E for me.

Long story short, the cancer has spread to my brain.

The CT scan showed up cerebral metastases with swelling (oedema) on the surrounding tissue. They kept me in hospital until the Wednesday. I’m booked in for an MRI scan early Monday next and I have a post-discharge follow-up session in Clinic the same evening to hear more details. In the meantime they’ve put me on anti-epilepsy drugs plus steroids to reduce swelling. They’ve told me to tear up my driving license and avoid machinery.

Brain metastasis in colorectal cancer is a rare thing – typically in the 2-3% range. But, I’ve survived so long beyond the few average years that are expected that I guess I’m now pushing the envelope where these stats are concerned. It’s not beyond the realms of possibility that this will be treatable. Whole-brain or localised radiotherapy would be one option. We shall see.

The day after I was discharged was my 57th birthday. I had the most fantastic few days with amazing and thoughtful gestures bestowed on me from every side. I even went in to the office and had a couple of hours at the beer festival. Arsenal did the necessary and won the FA Cup for me. I’m dizzy and I like to have someone near me when I’m out and about, but I’m happy. I just need to stay alive to enjoy all the good things I have.

It’s time to write the Lonsurf Diary.

To quickly recap, I was signed up for 3 cycles. Cycle 1 started January 11th 2017; cycle 2 on February 11th, and cycle 3 on March 11th. Each cycle lasts 28 days so the final day would have been around April 8th.

Since my bowel and liver surgery in August 2009, I’ve had three previous experiences of Chemotherapy. First was an adjuvant treatment with intravenous Oxaliplatin and oral Capecitabine lasting from Oct 2009 to Mar 2010. Then, there was FOLFIRI plus Cetuximab (both i/v) from Feb to Jun 2014. A drug trial combo of AZD6738 with Carboplatin (again, both i/v) followed one year later, from Feb to Jun 2015.

Each regimen brought different side effects. With Oxaliplatin, it was neuropathy and neutropaenia (low white blood cells). Cetuximab brought an acne-like rash all over my face and torso. Carboplatin and/or the experimental drug also lowered my white blood cells and platelets.

But none of these were really serious, as measured by my ability to do normal things like working, walking, and eating. No constant nausea. No hair loss. No mouth ulcers. No loss of appetite.

For the 2014 and 2015 sessions it was the same pattern. The first CT scan, done around three months in, would show a positive “progression-free” result. The next scan would show the cancer was progressive again and chemo would stop. Scans done after that have continued to show progression as the tumours get larger.

My most recent scan from early April showed the tumor growth had stabilized. When I initially asked for Lonsurf, I calculated a 2% chance of being a “super-achiever”, and around a 20% chance of getting any sort of positive result. As far as I know, I am one of six patients who have recently received Lonsurf at my hospital. I’m the only one with a progression-free result. That supports the statistic and makes me the “lucky one”.

Unfortunately, it also came with lots of tiredness / fatigue, reduced appetite, and nausea / vomiting. Although I managed to stay the course for each of the three cycles, my white blood count was dropping sharply. I ended up in hospital with (yet another) infection, and stayed there for 4 days at the beginning of April. After massive amounts of i/v antibiotics I felt good again. When they discharged me, I told them I had not felt this normal since around October of last year.

So, what to do next? This is the familiar ground of chemotherapy, in which increased progression-free survival is not such a benefit since it comes with toxic side-effects. I made the decision that I would ask for a break from the drug. To use the title of the David Jones first world war poem, I would become In Parenthesis. There will be another CT scan in late June, with results in early July, and we shall see then.

In the meantime, I’ve resumed my cryotherapy sessions back in Thoracic Park. One thing absent from the CT scan results was any mention of tracheal and bronchial lesions. They have done a great job cutting these out or reducing them. This will continue “for as long as I want them to do it”. I do.

It’s a tricky decision on the Lonsurf. After reading the obituary of Robert M. Pirsig, who died recently, I was reminded what he wrote back in 1974:

“The test of the machine is the satisfaction it gives you. There isn’t any other test. If the machine produces tranquility it’s right. If it disturbs you it’s wrong until either the machine or your mind is changed.” (Zen and the Art of Motorcycle Maintenance)

My body is my machine. It didn’t feel right. I need to take pause.

The only mountain I’ll ever climb is a metaphorical one, and yet some of the terms in the climbing glossary are very appealing. My favourite is Belaying, which is the use of an anchor for a rope so that a falling climber does not fall much further than the anchor point.

In CancerWorld, the rope is time. Every so often, it feels like you slip and fall. Instead of crashing all the way to your oblivion you are left dangling from some anchor point. It’s further down, but not the bottom. I compare what I considered my ‘normal health’, say back in November 2016, and it is not the same as today. I’ve often remarked previously on how absurd if felt to be suffering from a terminal illness and yet feel and look so healthy.

Now, I feel much more tired. My appetite has declined dramatically. I look at my body and see all the vanished muscle (still covered by some flabby fat, annoyingly). I’m not sure how severe the weight loss has to be before they call it Cachexia, but it must be close.

But in January I wanted desperately to start my chemotherapy drug, Lonsurf, and I pressed on. In February, when they said my blood counts were all normal, I asked to continue with cycle #2. This week, although I was expecting bad blood reports, in fact it was normal and I have been able to go on with cycle #3.

The side effects that would have led to abandonment (diarrhoea leading to dehydration then kidney damage, mostly) did not happen. I do feel enormous fatigue on many days, and occasional nausea. There is a tendency to under-estimate an oral drug compared to i/v, as it is four tiny tablets twice a day. But the 160mg daily dose soon builds up inside your system. In a given cycle you take the drug in the first half of the month, then abstain in the second half. It is during the second half that you feel it most.

The plan is to do a CT scan at the end of March, and review the results in early April. If the tumours have reduced, it will be motivation to carry on taking the drug. If they have increased, I will stop. If they are the same (“progression has been arrested”) then it will be a mighty dilemma.

Tomorrow, it’s back to Thoracic Park for the regular cryotherapy session. And, as always, again. They’ve worked on the same two lumps at most of the sessions so far. Trying to keep them in check and stop growth. They seem willing to carry on for the long-term.

My date at Addenbrookes on Jan 3 turned out to be a bit of a damp squib. The drug hadn’t been ordered (properly) and there was nothing waiting for me. Spend a fair few hours in Clinic and Pharmacy but the short of it is that it will be ordered and delivered to me.

A day out in a large hospital is a perfect way to sample the latest infections. I chose an especially virulent chest bacteria/virus, and spent the rest of the week in bed generating generous quantities of thick phlegm. It never quite got to fever stage, so just one step short of pneumonia.

Then, another day out in Thoracic Park for  a bit of freezing and frying. I should be so used to it by now, but I do rather play these things down. It starts with a bit of throat spray and then a large injection directly into the neck. I could feel a little panic coming on so asked for more sedative. Problem solved.

An hour ago. the courier arrived with the drug. The Lonsurf Diary can commence properly now. Tomorrow is a handy date to remember (11/1) so that will be Day #1. A bit of a slow start, but hopefully not quite in the realm of “While we ponder when to begin, it becomes too late”, as warned by Marcus Fabius Quintilianus.

Lonsurf is an oral drug, as I’ve mentioned before. That doesn’t make it less intense than an IV. Eight tablets a day for 5 days, two days off, and then on again for another five days. That will be Cycle 1.

Boys and girls, I fear we need an inspirational quote to get us going in 2017. I choose this one from William James: “Pessimism leads to weakness, optimism to power.”

Stay positive.

A lot has happened since my last post. Nothing has happened since my last post. I live in a Beckettian world now. I feel like I have a lot to say, but nothing at all to report.

So, I saw Oncology on November 21. The purpose of the meeting was to review the results of a CT scan done November 15 and agree next steps avec Mon OncDoc. The waiting area was the usual gloom-ridden pit of human despair and misery. You can always tell the newcomers because they clutch the shiny blue plastic wallet they give you for your little bits and pieces. After a few weeks you have enough paper to fill many over, so it gets dumped at home. There must be a lot of sweaty palms placed on those blue wallets, and you’d like to share some experience with the clutchers. But, think about starting a conversation about your life with your fellow passengers on the London Underground. Now, double the cringe. It’s a private, silent world in the Oncology waiting area.

They were running quite late, but nothing unusual in that and I budget many hours more than it should require anyway. It was about an hour late when I got the call to one of the little rooms backstage that they use for consultations. They asked if it was OK if this nurse and that nurse sat in to listen. Fine, I muttered, but where is me consultant? Ce n’est pas Mon OncDoc. It was the same doctor I met after my infection episode. They let me out on a Saturday provided I came back on the Monday to review my blood results. I got there on the Monday, but the blood results were not back from the lab. A wasted journey for a tired body.

Now, today here she is starting our little chat with the news that the CT scan results are not back yet. I felt sorry for her. She must be the doctor in sole charge of late and missing information, the fact of which has to be communicated to the patient. I’m sure her actual job title is snappier than that, but she needs to take a hard look at the delegated jobs she is getting from Mon OncDoc. She was willing to have a go, and we could have a little hypothetical talk about might be, and what could become. I explained that, after all these tests, I could probably guess the results within a reasonable degree of accuracy. This meeting, I said, is more about the continuation of my care plan review with one who knows the history, and to obtain answers to certain questions about treatment options. So, I asked to be returned to the waiting area and recalled when Mon OncDoc was available, no matter how long that took. Not the best thing they’d heard that day, but my request was granted. Quite stressful, nevertheless.

When I finally did see Mon OncDoc, I said I was disappointed that the results were late but no matter, here is my guess at what they were likely to be. We crossed swords on some of my terminology (he didn’t agree that the tumours in my pelvic area were “rampant”, for example). But I pressed on. What I really want, I said, are answers to three questions. One, should I be more concerned about the recurrence of tumours in my pelvis rather than the secondary metastases in my lungs? (Subtext: is primary cancer location more fearsome than secondary?). He told me that the lung tumours were the priority. I’m sad to say he resorted to the war metaphor to explain why :-). Two, if in 2009 the preferred plan was surgical removal of the colorectal tumours, why not do another resection down there now? He said no-one would ever agree to that. He didn’t spell it out, but I’m pretty sure the cost/risk of surgery is out-weighed by any benefits to a patient with multiple site malignancies.

So, question three, given your answer to question two. What about this drug “Lonsurf” that I’m reading about in the Bowel cancer forums? It’s a third line treatment. I tick all the boxes. Would you consider it for me? He cogitated, but said “yes” reasonably quickly. He expressed his doubts about the drug efficacy, but thought it worth trying. Now, a “yes” means that he will submit an application. This is one of those drugs that are not cheap, and NICE needs to approve each case. I would come back on December 12 to hear the outcome.

After the drama, it was time for a quiet expedition to Thoracic Park on November 28 for another round of cryotherapy. There is an especially worrying tumour in the left bronchus that could shut down the whole left airway, and that would be the end of the rest of my left lung function. They had a good old go at that, and it was fun to watch the monitor as they ‘looped’ the tumour with what I guess is a very thin wire. Tighten the loop, and whoosh! A proper horrorshow, my droogs, with plenty of the old krovvy on show, if you pony me.

There was still time too for a trip to the Piss Factory. My colorectal specialist nurse fixed me up an appointment with her counterpart in urology. She changed all the pipes for a fresh set. I asked her to tell me the part number for the bags so that I could get my GP to prescribe. But, she went one better and phoned the medical supplies company to register me and arrange it all for home delivery. What a champion!

She wasn’t long on the phone, but what struck me was that here was a medical professional talking *about* me. Usually, we’re talking to each other. In answer to one question, she replied “He has cancer”. This is the weird thing. I sat four feet away and thought: “Do I?” It’s only been eight years for me to get used to the idea. But I was still thinking “Is that true?”

Later the same day I was at a techie event to do with Virtual Reality. I was mainly there because they followed it with a showing of the movie “Notes on Blindness” that I have been desperately trying to see. One of the talks on VR said their big problem was creating and maintaining what they call “Presence”. This is where they design the software and headsets such that your brain accepts the experience as feeling real, even if you’re know you are actually inside a game. For a moment there, in that urology consulting room, I had lost my sense of cancer presence.

But, as Nick Cave says, the tree don’t care what the little bird sings. It’s there. This not The Matrix.

So, this drug Lonsurf, what’s that all about. It’s another of those ‘double whammy’ combinations of two compounds. The first, called TFD, gets into the DNA and kills the cells. The second, called TPI, stops cell re-growth. It’s not a trial drug. It passed all the Phase 3 tests and it proved to be “fairly well tolerated” and “elicited an immune response in some patients”. It’s an oral therapy, so no hanging around for hours hooked up to a drip.  I’ll probably start on 3 cycles of 28 days each.

Why did I ask to do it? Let me borrow the answer to that from another cancer blog: “I got very depressed by the idea that I had to choose between nothing and chemotherapy”. What do I expect from it? For all these ‘wonder drugs’ that ‘cure cancer’, I get the impression there is no impact whatsoever on 80% of the people who take the drug. Of the remainder, 18-19% might get a temporary pause in disease progression, as if the cancer was figuring out this new variable. That leaves 1-2% who are the ‘super achievers’. They get the headlines.

When I say there is no impact on 80% of people, I don’t mean the side effects. There is a 100% chance that everyone will get some of those. The most likely is rapid decline in white blood cell and/or platelet count. Ulcers and skin reactions are also possible. But I’m willing to accept that.

On the subject of miracle drugs, the DeathLit Cafe had a new customer, but unfortunately he was only able to linger for a short while. The journalist AA Gill died only three weeks after dropping off his first dispatch. It was good copy. He had the “full English” of cancers, he wrote, which invited a visceral imagining of tainted kidney and liver pushed across a breakfast plate of foul malignancy. In fact, he had lung cancer that spread to his neck and pancreas. It sounds like it was a pancreatic tumour that finally did for him.

It’s a shame such a talented polemicist had such a short time to hone his experience and get down his insightful views on our very pet topic, Living With Cancer. The more so, because his fame would provide a powerful platform for any opinions that he did get time to share. His opinion was that a drug called Nivolumab would be his life-saver, if only the bad old NHS was not withholding it from him. I’m afraid this is just the optimism of a neophyte. He did in fact get access to the drug, but it made no difference.

The death list from 2016 grew a bit longer. Not a popular year, 2016. And yet, it occurred to me (too late as usual) that it would have been an awfully handy year to die. For decades to come, people could say about me: “Yes I remember the year he went. Same year as Bowie and Leonard Cohen and a bunch of other greats. Not that he was in the same league, of course, but it was the same year”. Btw I put the last bit as a nod to modesty. You don’t have to use that bit if you think it makes the paragraph too long :-).

Still, no use crying over missed hearses.

For a while there, it was a line from a Tom Murphy novel: “Bejaysus, ’tis worse things are improving“.  The infection took hard on me after the operation in late September and by the middle of October I had to seek help. I was admitted into hospital again. “Cancer fever“, they said. There was a backup of urine and they had to catheter again. For many days it flowed red with blood, which they put down to a tumour penetrating into the bladder wall and bleeding into there. After three days, and a lot of antibiotics, my creatine levels were normal enough to get a discharge home. I’d become convinced there was something tumerous pressing on my stomach, but it was more likely the unhappy alliance of the bladder and the lung tumours working together.

A couple more days lying in bed at home, and a class of recovery started to come upon me. The cancer fever dream lifted, and I was alive again.

That was good enough to jump in the car and head for Aldeburgh on the coast. Well, I’m all revved up and ready, baby, as Lene Lovich once said. Lots of sea and shingle. It was an impressionist painting of pale blue sea/sky abutting onto beige pebbles. In the stillness of the dawn early light you could be forgiven for forgetting the current madness of this world. It is of course Benjamin Britten / Peter Grimes territory, hence the title. Managed to get in some long walks, spotting some good birds along the way. How many more Autumns?

Then home again for another day trip to Thoracic Park. More cameras in the lungs. They say the second tumour in the bronchus is growing. There is talk of more radical intervention to prevent it from closing down the left lung. Radiotherapy or stents, perhaps. Discussions about me will be had. I will be told.

At the end of November I will also meet with Oncology. It will be an interesting conversation. I have questions to ask about pelvic surgery and/or  treatment with a newly-approved drug for colorectal metastatic cancers.

In the meantime, I work. I make lists about things that need to be done. No point in having time to prepare if you don’t use it. I laugh at marketing emails from my bank: “Pushed for time, Paul?“. Just a bit, NatWest, just a bit.

A rough, rough month. Down and downer all the days as my tumours now start to take the upper hand. As Kafka once said about his TB: “My head and lungs have come to an agreement without my knowledge“.

I went for a regular bronchoscopy plus cryotherapy in early September. They injected the tracheal tumour four times but the bleeding was hard and they couldn’t see what they were doing very well. Each time it bleeds, they have to swap the needle for a suction and with adrenaline etc they get it under control and then try again. A slow process. They said it would need attention again but sooner than usual. In the end, they called me for a CT scan, and a week after for a meeting to discuss the results. I was sure the message would be that they’d done all they could, and must now stop. In fact, it was the opposite. They wanted to escalate it up to a more interventionist surgical procedure (a rigid bronchoscopy as opposed to the usual flexible bronchoscopy).

That went ahead this week. General anaesthetic required. Nonetheless, an early start at 7:30 meant I was back on ward by 10:00 and discharged by 4:00pm. The ‘new’ surgeon took on the trachea tumour and the before/after photos were amazing. From an angry bloody abrasion of white pinked with bloody veins to a smooth surface. It is a really good outcome, better than I dared expect. The ‘regular’ surgeon was then able to get around the corner to the bronchial tumour and he had a good go at that. They will return to it again. All of this is in the centre/left lung. On the right side, there is a central tumour that is now over 4cm in size. A grape is around 2cm; a plum is between 4-6cm. But that doesn’t cause any issue, so it is ignored for the present.

The tumerous lump pressing on my bladder was also highlighted from the CT scan, but I’ll have to get the Piss Factory involved on that one. It may mean getting the old catheter treatment again. Bah!

Weirdest of all are the stomach issues. I’ve had a generous lump of scar tissue near my solar plexus since the op in 2009. It just seems to be pressing more on me now. Stomach acid is a major issue and I haven’t had a meal in weeks. Yogurt, jelly, and milky cereal are my only respite. I’ve lost 3Kg in just a month. I keep mentioning it to doctors, but it isn’t on any current agenda for lung or urology, so I now have to push on the hospital until I get somewhere. It’s a full time job getting it all sorted.

It could be the scar tissue, but the other possibility is cytokines. Cancer causes the body to react as it would to say, the ‘flu. So I get these erratic surges in temperature and shaking etc. Cytokines are also good appetite suppressants.

When you have such localised problem areas it’s hard not to use the old cancer-as-battleground metaphor. Each one a front where the enemy must be confronted. I fell back on a book I first read years ago as a student – Susan Sontag’s “Illness as Metaphor“. She compares the C19th attitude towards TB with the C20th attitude towards Cancer. Cancer, unlike TB, is a disease which nobody has managed to glamourise. TB in its heyday had a much better image – pale, interesting, wan, sad, weary, melancholic, romantic. And yet, I remember walking as a child with my parents in the grounds of the local TB hospital. It was an old country house and estate that had been compulsorily acquired to open the sanatorium. It was spring, and the path was lined with daffodils. I was sternly commanded not to touch them, let alone pick them, in case they had been spat on. Now, I’m one of the unclean.

The two most common metaphors Sontag’s analysis uncovered are what she termed “violence” metaphors – fights, battles wars, etc, – and “journey” metaphors. Both bring problems. We’ve talked before about the patient shaming that is the baggage of the war metaphor. No matter how brave the soldier, they will become the fallen. We must accept their loss and carry on the fight. And those fat people who won’t change their lifestyle? Well, they may as well be the enemy within.

It’s all a load of tosh. If you want an analogy, your body is a million delicate instruments operating in tandem. That one or two goes out of sync should not be a surprise. We just need to know how and why, so a pill will correct it. Soon come!

I got to thinking about metaphors for cancer in general.

War

The big one. Trigger words are war, battle, fight, win/lose, struggle, body as battlefield. Other words to watch out for: blitz, air raid, all-clear. I tell you this, if it is a battle, then I’m the ravaged battlefield and not the General in command.

It can be a different type of war. The body is the internal battlefield, the homeland or home front. In this one, cancer is the spy, traitor, enemy within, or double agent. This one is a cold war.

Sometimes, you are up against a silent killer, an assassin. Cowardly cancer. It is your personal nemesis, stalking just you and ignoring all others. W.H. Auden said it first (“It’s like some hidden assassin Waiting to strike at you.“), but here is Harold Pinter (2002) also taking this view:

I need to see my tumour dead
A tumour which forgets to die
But plans to murder me instead.

It can get a tad existential when it turns out that the assassin is actually you, but a you that has turned on yourself in the ultimate act of betrayal.

Journey

Cancer is a road, path, or journey. You may cross the border into its domain, and you may even need the passport your diagnosis gives to allow you passage. Christopher Hitchens called that place “Tumorville“, as he was deported “from the country of the well across the stark frontier that marks off the land of malady.

You may meet fellow travellers. The journey through cancer treatment is the thing that teaches you how to live. One of the more negative implications of the journey metaphor is when people speak of the journey as pre-destined. This is the realm of “everything happens for a reason“. Before you know it, your cancer is a gift or talisman that only you can carry on your quest. The fuck it is. You’d dump it and go back to being a hovel-loving little Hobbit the first minute you had the choice.

Corruption or Rot

Cancer eats you from within. It rots down and eats away all that is healthy. Like a mould or fungus, it creeps across the space. It spreads and grows, like gangrene eats the flesh or canker takes the wood. It may, or may not be, your fault for being morally weak or sad or angry and allowing the rot to enter and take hold. The danger comes if you come to believe you can offset the rotten by imbibing only the pure and the good. Nothing wrong with assisting in early stage cannabidiol drug trials, but you can stick your coffee enemas up your a…, oh, wait a minute.

Alien Parasite

A variation on the above is that cancer is a parasite. Borrowing from the Alien movie, it is a foreign body that has taken hold of the host, and grows within. A dark and malignant “pregnancy” that proceeds by stealth. As J.M. Coetzee puts it: “Monstrous growths, misbirths: a sign that one is beyond one’s term.”  It creeps along the lymphatic system from node to node, like it’s hiding in the spaceship air ducts.

Plague

Or, a plague of locusts that plunders the once-healthy land. A wild whirlwind of destruction. Here is an example:

Kitty’s cancer is proving swift and ravenous, spreading like armies of insects eager to join together at a central hub. Tumours race through her, nesting in organs and slowly shutting them down. To them, nothing is inedible; metastases forming in bone and soft tissue, neoplasms leaving bad cells in their wake as they feast on the good. Paul Tomkins, The Girl On The Pier (2015)

Predator 

I’m guilty of using this one. “Cancer is the shadow of a shark under your raft” says I back in January. Another example I found recently is from Stephen J. Kudless: “It was a shark, her disease. It took her in many bites.”

Crash

The feeling of going through cancer is a long, drawn-out experience. Talking about his wife’s experience with breast cancer, Adrian Edmondson said: “It’s a long grind, like a slow car crash that will last five years and then, hopefully, we’ll get out.” That lack of control is often evident in metaphors such as cancer is like being on a carousel, forced to go around and around, with no way to get off.

I’m sure there are others, and it will keep me occupied looking for them. Sure, it’s something to do.

Went to Oncology in late July to hear the results from the CT scan I had many weeks before that. Short summary is there was no good news. It’s still progressive, which is bad, but then there’s nothing new or catastrophic to report either. Most of my tumours are increasing in size. For example, the largest area of soft tissue on my upper left lung went from 37mm to 46mm and continues to obstruct the left upper lobe. It’s pushing against my left pulmonary artery and I must hope that it doesn’t push through to trigger the La Traviata outcome. There is more soft tissue in the pelvic area, in something called the presacral space, which tends to cause pain in the lower back and hips.

Also on the agenda was my suitability for the drug trial. The genetic screening result came back negative – I’m not in the 20% minority and don’t have the right wrong gene. Therefore there’s no place for me on the amusingly-named “STARTRK” trial, and I won’t be boldly going anywhere.

One interesting revelation was I could still opt for more chemotherapy, if I so desired. I said that I didn’t think I wanted to do so. I now regard chemo like the “dead cat bounce” they talk about in stock markets. The poison kills enough cells and pauses growth to make a short term impact, but it isn’t lasting. It may even provoke my over-eager genetic triggers to produce even more cancerous cells as a response. I left enough wiggle room so the consultant could tell me what a fool I was, and that it was best for me, but generally he agreed that my decision was “right for me”.

At least the Thoracic Park adventure continues. I was there just after for a spot of injecting, cutting and general vacuuming of the lung tissues. They’d left it a while since my last visit, and I think they’d forgotten me until I reminded them. But they did a tidy, neat job, and I’m better for it. Unlike the Piss Factory, who seem to have finished with me now, without so much as a farewell night out.

So, where does this leave me, Doc? I’m a bit of a conundrum to them. When I first appeared on their horizon in 2009 I was something of a classic “type 4” – advanced cancer, diagnosed late, wonky stem cells, poor prognosis, etc. But (with their help and treatment) I’m turning into more of a “type 2” where the decline is of the slower variety. Just another reminder that any specific cancer is really many different forms of disease hitting the same organ, and any cure has very many targets to pursue, with all the excitement and frustration that entails. They can’t do very much, but at the same time not much is going badly. Remember I’m supposed to be on a “two years, probably not five” countdown and that timer started 20 months ago. I have to say I don’t feel like I’ve used up >80% of the allotted time. Maybe it feels more like the 33% option.

This is clearly a good thing. The longer, the better. But at the same time there is no certainty. I’ve just read Paul Kingsnorth’s novel “Beast” about a would-be hermit, alone on the moor and probably unhinged, who stalks and/or is stalked by a mysterious big cat (very Beast of Bodmin). There’s a sentence in it that makes me think of cancer: “I am in the presence of something that does not know time“. Michael Faber’s short book of poems “Undying” tries to make sense of it all while watching his wife Eva die from cancer over a six-year period. He calls it “a harmony of dark biology“. On the one hand, more time is good. On the other hand, who doesn’t want to wake from a nightmare where you are being stalked by the dark beast? To quote Umberto Eco: “is this not a death undying?“. Yet I know that I am definitely no Tithonus, doomed to get older without ever dying.

I am fairly sanguine about it all. I am equally concerned about putting some vivification back into my life. We went away twice in July, which can be a big deal for me and my personal medical supplies mobile apothecary. It all went pretty well. I connected with as much of the wildness in man and nature as I wanted. The pleasures required are small and simple – a type of bird or butterfly will do it. Maybe my role now is just to get on with it, smile a bit, and not be too much of a cancer bore. “To be a rock and not to roll”, as the song says. You’d think that under the circumstances one would want to gorge on life’s pleasures before time runs out, to take in all the sapori e saperi that is to be had. But the appetite is weak.

Meanwhile, the Exterminating Angel smiles, and moves along.

I want to write my book. The one that has the cover blurb “When he beat cancer in 2016, he decided to share…”. But it looks unlikely.

I’m willing to try. The ‘running repairs’ on the lungs (as both I and the doctors now call them) carry on at 5-6 week intervals. Last time, the gauzy bandage they put over my eyes slipped and/or I wasn’t so sedated so I watched the screen and saw the camera navigate around the tubes of my lungs. It was fascinating. The scope would touch the side and trigger a little irritation, and a millisecond later I would give a little cough. Then the viscous tube would shudder and a little blood and mucus would surround the camera. It would be sucked away. I would suppress the urge to cough and we could then settle down to more probing and cutting and injecting. A fantastic voyage, indeed. As the camera was coming out, it went past two creamy-white blobs on the surface of my windpipe. I heard the surgeon say to his colleagues “there’s two more. we’ll get them next time”. Now I don’t even need the CT scan booked at the end of June. I know what they’ll find. Unless of course the lung guys get to the tumours first.

But these are just tinkerings with the problem. The real cure for cancer requires the miracle drug. And so to early drug trial phase 1 meeting I go. Yes, we have a candidate drug, they say. Something for someone like you who tells us he won’t take any chemotherapy in combination, no matter how potentially appealing the drug we offer.

It’s one of the tyrosine kinase inhibitor drugs. Yes, I know, but let me try to help. Tyrosine kinases are the chemicals that act like an on/off switch on proteins to trigger growth. These proteins are triggered by your genes. Very specific genes trigger very specific proteins and when we look at cancer cells we see too many of these proteins. So, if we could only stop them growing…

The drug being considered for me acts on a very small range of proteins and only around 5% of cancer patient populations have the ‘right’ sort of mutations. So, only a 1 in 20 chance that I’ll be one. The way they find out is to send a bit of my biopsy tissue from the great freezer to the laboratory of the drug company in the USA. They take a look and report back in a few weeks. As the OncDoc said, if it’s a match the red lights will start flashing and the klaxons will go off. Another way of saying: don’t build up your hopes.

He also said it was pretty much the last roll of the dice where drug trials were concerned, for the foreseeable future. They have nothing else.

Drugs that act on such specific proteins, explicitly detected in a person, are the epitome of personalised  medicine. Quite the opposite of the salted earth approach of chemotherapy. Maybe there are other drugs, in other trials, at other hospitals?

And there are other drugs, certainly. Some do the opposite to the inhibitors. They “take the brakes off” your body’s immune system and flood the place with good antibodies. Others act like vaccines and trigger the body to target cancer cells for destruction. Others are “Trojan horses” that get inside the cancer cells and cause them to die. All of it traces back to the discovery of T cells – the immune cells that kill cancer, in 1998.

I’ve had some of them (e.g. Cetuximab) already, with no great results. You read about others in the papers (“wonder drug”, “cure for cancer”). An example is Nivolumab, which was recently licensed in the UK for Kidney Cancer. Another one is Ipilimumab. It’s used to treat melanoma and is ‘only’ 4,000 times more expensive than gold.

But it’s a tough one. There has to be a UK trial. It has to be for your sort of cancer. They have conditions that you must meet (e.g. no more than 2 types of chemotherapy in your history). And, most stringent of all, that you have the right sort of wrong genes.

If you are not mindful, looking for a trial can be a hope-shredder.

No wonder that you turn to the bookstore for the manual to beat cancer. Just drink it, eat it, live it, think it, and all will be changed utterly. It’s like the “Scarborough Fair” ballad, but maybe more along the lines Parsley, Sage, Rosemary, and Dying.

It’s all down to our blinkered Western philosophy of medicine and the evil machinations of Big Pharma to keep the truth from us. Just consider the list of herbal remedies (e.g. garlic, mistletoe, hypericum, lingzhi mushrooms, milkvetch) that we could turn to instead. Look, the people of China and Vietnam even call the mushrooms “soul/spirit”. They must be good for you? Or, at least OK to take in parallel with traditional medicine?

Maybe not. One study in 2010 showed that a daily dose of St John’s Wort (hypericum) decreased levels of the active metabolite of Irinotecan (chemotherapy) by 42%.

Just think positive thoughts. Thinking positive affects the immune system in a good way so it’s just like taking all those monoclonal antibodies, only free and with no side effects.

Maybe not. Psychologists who have looked at the effects of optimism on immunologically affected diseases such as HIV and cancer have not been able to find a positive link. In fact, there is the disappointment hypothesis: “When things go wrong in a big way, the optimist may be particularly vulnerable.” (Tennen and Affleck, 1987).

I read one account of a “cancer survivor” who pushes the positive thoughts thing as the reason he was cured. He just mentions in passing where his brain tumor was located. He ignores the fact that it is possible to cure some brain tumours with surgery if (like his) they are located on the outside of the brain. Surely, it is his surgeon that deserves the credit?

I never forget my personal outcomes. Like 95% of people with colorectal cancers I had  adenocarcinomas. Like 50% of those patients I was diagnosed with liver metastases. But, only a small proportion of patients with liver metastases are candidates for surgery. I was one of those. Without it, I would have died. Probably sometime in 2010 or 2011.

“What a mean old bastard” you may by now be saying. He’s against a bit of yoga even though it may reduce fear and fatigue for cancer patients. I’m not and I’m certainly not advocating pessimism. I know the sense of helplessness that makes the self-help stuff so beguiling. But I worry about distractions that take us away to a crazy wild optimism (“I heard they had a cure for cancer”), the slow arbitrariness of drug approvals in cash-strapped health systems, and the politics of price controls for insanely-expensive pharmaceutical drugs.

Lighten up.

The worst of all is when someone with a marketing or business consultancy background goes through the cancer thing. They are compelled to tell the story and put it all inside some nice marketing framework. So, let’s go from genes to memes, just like Richard Dawkins did.

There may be someone out there starting his or her book on How to be a Cancer Survivor, so here is a handy list of memes that they could use: Cancer Dojo, Cancer Hacks, Cancer Keeper, Cancer Maven, Cancer Mojo, Cancer Monkey, Cancer Paradox, Cancer Principle, Cancer Senshi, Cancer Warcraft, Cancer Wars, Cancer Whisperer, and Cancer Wrangler. [Warning: some of these may already be in use in actual books, like.]

Others I have considered but cannot really recommend include: Dances With Cancer, The Lean Cancer Handbook, The 7 Habits of Highly Effective Cancer Survivors, Blue Ocean Cancer, Game of Cancer, Keep Calm and Have Cancer, Real Housewives of Cancer County, The Only Way Is Cancer, and CancerShifter.

Definitely stay away from Y U NO Beat Cancer?