Meeting Dr. Bonce

Now I know I shouldn't be worried, my side effects from chemotherapy have been pretty mild so far, certainly compared to the horror stories I read about on the forums. The drugs are still working so far, the last scan showed a small reduction on the liver metastases and apart from a few niggles with planar/plantar syndrome I feel pretty healthy.

So far.

And over the last few weeks it's that "so far" that's been nagging at me. The anxiety that I've had a year and a half and median survival is two years. The stress of wondering every chemo session if the portacath is going to behave. Worrying that every sneeze and sniffle is the beginning of the neutropenic sepsis that's going to have me joining the choir invisible*. It was getting to the stage where I really was getting myself quite wound up the day before chemo and also, sorry Mrs Dracunculus, probably being a bit of a mardy git into the bargain.

So something needed to happen in the head department. I needed some kind of bonce doctor to peer inside this dragon's head and, I don't know, tell me it's all because I loved my mummy or something.

Anyway it turns out there's this charity called Maggies who, according to their blurb, offer "practical, emotional and social support" to cancer patients and their families and I knew there was one of their centres on the hospital grounds at Addenbrookes so last week I toddled over, took a deep breath and walked in. Weirdly its probably the toughest thing I've done during the whole cancer malarkey; the medical side is easy, that's just being poked and prodded. This is admitting that you're not as tough as you thought you were, that your emotions are shot to hell and that you need help.

Which is stupid when you think about it, treating how you cope with this bastard of a disease is just as important as treating the tumours themselves. Perhaps it's a hangover from the "big boys don't cry" generation I was brought up in but I would say to anyone going through any illness or trauma that it's OK to ask for help and you probably should.

So the volunteer I talked to immediately sorted out a cup of tea in the traditional English ritual that there's nothing that can't be fixed so long as you've got a mug of builder's and she arranged for me to see their psychologist who we'll call Dr. Bonce, notice he's a psychologist not a psychiatrist - there's a difference, and earlier this week I duly pop back and we have our first session.

Not surprisingly what I'm going through is completely normal and, after a lot of questions which determined I wasn't about to turn myself into pavement pizza by throwing myself off the roof of the hospital multi-storey car park, he tells me that it's my "threat centre" that's somewhat overactive. Apparently that's the bit of the brain that kept us alive when we dressed like Raquel Welch in One Million Years BC

Fig. 26b "Ug has PTSD from seeing mother eaten by dinosaur! Ug wants your girlfriend!"

Also one of the fun things about this bit of the brain is that exaggerates threats, so that rustle in the bushes is a lion about to pounce or these days that twinge is your portacath lumen breaking loose and lodging in a particularly inconvenient artery, and that's why you get anxious.

So what's the plan. Well I'm booked in for a few sessions with Dr. Bonce and he's going to teach me some stress reduction exercises and something called "mindfulness" which appears to be something about putting yourself in the moment and stopping worrying about the future. All sounds like good stuff that I can use and, to be honest, just going and talking abut this stuff to someone has helped a lot.

It's good to talk.





* I'm a baritone in case The Almighty is reading this blog

I'm still here

For those of you that might have been worried (all 2 of you) I am still here and reasonably hale and hearty. I haven't been posting much because, well, nothing has really been happening. The old routine re-established itself after my chemo break and everything just chugged along.

But now I'm coming to the end of this round of chemo with cycle 12 of FOLFRI and Cetuximab staring tomorrow and a slightly out of sequence spin in the Donut of Doom happened earlier today. So what happens now? Well after a couple of chats with my oncologist it seems we just keep on keeping on. I'll get a short break for 4 weeks and then, assuming the scan shows the cancer hasn't grown, it's back to the nasty chemicals every 2 weeks.

Why only four weeks. Well that's the lovely caring NHS and the bollocks that is the Cancer Drugs Fund. The rules state that if you take a break of more that 4 weeks from Cetuximab then you lose the funding for it and can't have it again. Ever. From what I've been able to tell there's no clinical reason for this it's just a rule they have, probably purely for cash reasons. Seems to be plenty of money to splash out on ridiculous overseas aid projects and high speed rail line vanity projects but if you need these pricey* chemo drugs then sod you.  Not that private healthcare is much better, my private medical insurance has a specific clause in it that excludes cover for monoclonal antibody treatments.

So it's four weeks off and then another three months of fortnightly poisoning.

And how long can we keep this up? Well the answer seems to be "as long as you can stand it", or alternatively as long as the Donut of Doom says it's still working as I presume at some point the cancer becomes resistant to the chemical soup.

And how long can I stand it? Well to be honest I don't really know. Sure the three days of treatment and the couple after are not fun but it's bearable since we fannied about with the nausea medication** and the skin cracking is under control thanks to liberal applications of skin care gunk they usually use to treat eczema (hey, whatever works!).   What's hit home is the realisation that I'm now on this stuff forever. I suppose it's no worse than, say, dialysis for a kidney patient but it still a rather scary thought to wrap you brain around.

But I'm an awkward git (comes of being a dragon you see) and so long as it's keeping me still here we'll keep on doing it.





* it's about £3000 a time to be fair

** Metaclopromide, Ondansetron and Domperadone. All I'm missing is Aprepitant for the full house

What I did on my chemo break

They say that money can't buy you happiness.

No, but it can buy you a room here, with hot and cold running flunkies, cocktails, spa treatments and a slap up celebratory dinner at Gary Rhodes' place

Taking a break

Yes I know I haven't been posting lately and mainly that's because nothing very exciting has been happening on the cancer front. It's just been the routine that I recall from last year and it's quite surprising how easily being poked, prodded and poisoned does become a routine. Clinic on Monday (poke for bloods), chemo day unit on Wednesday (poke in the chest for the IV line), feeling like crap on Thursday and a trip to the shining metropolis* of Wisbech on Friday to have the pump taken off and the poking stick removed from my chest.

So today I should be feeling like death warmed up and getting ready for a trip to the Pride of the Fens but I'm not for the kindly oncologist has had a look at my cracked and bleeding feet and hands and the post cycle 6 scans which showed a 50% reduction in the liver metastases and declared that I can have 4 weeks off. The reasoning being that a break from the chemo will let me recover a bit from the side effects and make the remaining 6 cycles easier to bear and should have no adverse effects on the treatment of the cancer. I'm rather pleased about that as last time we just went for the full 12 cycles without stopping and by cycle 10 I was hardly recovering before it was time for the next one to start.

"Try and get some rest" they told me. So being me I'm getting on a plane on Monday so I can sit on a sun lounger for a week in 35 degree sunshine.

I'll probably be bored stupid by Thursday and steal a camel.






* may not actually shine, or be a metropolis.

Woo Woo! Here comes the desperation train.

I rather like the opera, sure it takes ten minutes in opera to say you would like a cup of tea because six people have to sing the line about wanting tea and how wonderful tea is about thirty times but that's fine; something as important as tea is worth taking time singing over.  Anyway just before Christmas I was lucky enough to get to see a performance of Donizetti's comic opera "The Elixir of Love", the story of which revolves around a love-struck young man and a fake potion sold by the quack Doctor Dulcamara that'll cause the unattainable object of our hero's affections to fall madly in love with him.

Fig 42: "Tea, Tea, Wonderful Tea. We all like tea!" (repeat 86 times)

The joke is that the "love potion" is nothing of the sort, just a bottle of wine, but in the end the boy gets the girl and everyone gets a curtain call.

However this week I was reminded of Doctor Dulcamara as a couple of things on the medical front happened (not to me) in the past week. Firstly there has been a private members bill* passing through parliament recently known after its sponsor as "The Saatchi Bill" but more formally as The Medical Innovations Bill which on the face of it sounds like it makes sense. The idea is that doctors should be free, with the patients consent, to try out new experimental treatments for cancer and other life threatening diseases without the fear of being sued for negligence if the patient subsequently explodes or is transformed into a eighty foot tall monster who goes on to ravage down-town Tokyo.  You can read a bit about it here and the fact that the normally useless Lib Dems make have actually done something worthwhile and killed it off.

Now initially I thought that The Saatchi Bill might be a good idea but after a bit of thought it's actually a pretty terrible one and would in essence run the very serious risk of being little more than a charter for your real world Doctor Dulcamaras. There is experimental and innovative treatment being offered to cancer patients all the time, from the likes of the FOXFIRE trial that I'm taking part in to new medicines that are so shiny they don't have names yet, just serial numbers. However all these treatments have in common is that there's some science been done to show that at least in theory its more curative than harmful and its at least been looked over by an ethics committee to ensure that it's probably not going to injure you or subject you to undue risk. Of course there are always risks; FOXFIRE I recall had a 1 in 1000 chance of completely destroying your liver but at least there were safeguards and one of those safeguards is the knowledge in the medical team that if they are reckless they're going to get sued up hill and down dale.

The problem is of course the big scary "Cancer" word. The drug treatments that are known to work are invariably toxic and they only work for so long so those of us with the disease, particularly advanced stages of it, are looking at long treatments that are aimed at keeping us alive for a bit longer and as one treatment after another becomes ineffective then desperation is in some cases going to take hold and regrettably people fall prey to every kind of mountebank and charlatan out there with the latest and greatest miracle cure. I'm sure some of these people who recommend and supply genuinely believe that sticking a litre of coffee up your jacksie five times a day as the "Wellness Warrior" did will cure you, or apricot kernels or whatever is the latest "wonder" thing that "big pharma" don't want you to know about. But let's face it they don't, it's just pseudoscientific woo.    

Of course you're never going to stop this and here's an article showing the kind of pickles people get themselves into when they hop on the "alternative" train but at least with the defeat of the Saatchi bill we won't be adding to the problem.

And what about me, you may ask? Sure you're OK now, maybe the Cetuximab is giving you a complexion you thought you'd left behind when you were 13 years old but its working. What happens when it stops working and you're looking at the big guy with the scythe who TALKS IN CAPITALS, wouldn't you grab at anything?

No, I'll put my trust in science and reason and by all means enrol in any phase 1 trails that a going but more out of a "at least I might do some good" motivation rather than "I'll do anything for another three months" but I won't be grasping at phantom promises of the woo merchants.  I'd rather go out and buy the most expensive bottle of Bordeaux that I can find.

After all, if it's good enough for Dulcamara's love potion...











* for my non UK readers a bill is a draft law and a private members one is a law that's proposed by a single member of parliament or the House of Lords rather than the government of the day.

New Port

Well the new portacath has been in a week and, miracle of miracles, it's working! Currently it's dribbling Cetuximab into me very slowly as apparently it's not a drug you really want to rush as very bad things happen if you do.

After this comes the Irinotecan, dubbed "Evil Irene" by some patients which can be given a bit faster but which has its own particularly fun side effect, acute cholinergic syndrome which the medical literature cheerfully notes "can be fatal." To combat this they give you a shot of atropine first which, equally cheerfully, is the active ingredient in the poisonous plant Deadly Nightshade, also called Belladonna. So they give you a poison to counteract the other poison.

Isn't chemotherapy wonderful.

After that it's a simple matter of pumping you full of Folinic Acid which serves to give the next drug, Fluorouracil (5FU) a leg up. That's a nice drug and only gives you the squits, make you throw up, stops your bone marrow making white cells and platelets so you're prone to neutropenic sepsis and/or bleeding uncontrollably and also throws in palmar-plantar syndrome and mouth ulcers into the mix. Oh and the most bone weary fatigue you've ever had.

It had better be working or I'm going to be one mightily pigged off dragon.

The man in bed eight

If you've been keeping up with the blog you'll know that last week didn't exactly go very smoothly and come Thursday afternoon I was having a little bit of a sense of humour failure. So when I finally did get to sit down in the comfy chair and start connecting up to the necessary tubes and wires what's the last thing I want to hear from next door?

"Groan... Moan... Nurrrrse!"

Oh dear Jesus Christ on a Pogo Stick, it's the return of The Man From Bed Seven

Except it wasn't as it became quite clear that this chap was indeed in some kind of distress. I caught a glimpse of him when the overstretched nursing staff finally did get around to him, curled up almost in a foetal position on a hospital bed, wet from a spilt drink and a smell indicating that something had gone rather wrong in the stoma department.

"Where am I? What's happening?" he asked. Over and over again.

"You're in hospital Mr Smith¹ they told him.

"Where am I?"

There were brief flashes of lucidity, he apologised to the nurses for the state he was in and the trouble he was causing, back in the day he had clearly been a civil and polite gentleman, but then the clouds rolled back in front of the sun and he couldn't understand why they needed to change his shirt.

"It's because you're all wet Mr Smith"

"What's happening?"

And then you hear the words you never want to hear in an oncology unit or quite frankly in any medical context. "Oh my god! <Senior Nurse Name> can you come here right away please"

I stuck my head in my laptop and tried to ignore the grunts and moans of pain from beyond the curtain.

After about half an hour whatever it was had been sorted out, treatment was over and they bundled up Mr Smith into his outside coat and humiliating knitted woolly bobble hat and plonked him in a wheelchair.

"Where am I going?"

"You're going home Mr Smith?"

"Home?" his voice visibly brightened.

"To the nursing home."

"I'm going home?" not so bright this time.

Then they left him. They were running late and had to cram the last few of us cancer dudes through the poking and prodding by eight when they shut up shop so Mr Smith just got unceremoniously parked up in a chair, hunched over in a huge coat and stupid hat like some kind of decrepit smurf who asked over and over "Where am I going?"

At one point he tried to move his chair. As the brakes were on all he succeeded in doing was making it rock backwards at such an alarming degree myself and another patient called out for one of the nurses to grab him as he was severely in danger of toppling backwards and dashing his brains out.

Eventually his transport must have arrived as some orderly came and wheeled him away, still asking where he was going.

He had nobody with him. He had no clue what had been done to him. He had no clue where he was going.

And as I sit here reeling from the effects of the treatment I consented to I have to wonder why we as a society were inflicting the same poisoning on this poor bastard. Maybe to ease his symptoms? Maybe some (absent) relative was a "You must save my grandpa at all costs" emotional mess? I don't know and I don't have any answers.

I'm not sure though that me and that other patient who called the nurse over did him any favours though.




¹ not his real name of course.