I'm tapping this into the lappy whilst sat tin the day unit having me chemo and I'm going to have to get a move on as my chemo is going to be a good deal shorter than it previously has been. That's because the clever people who work out what toxic chemicals to pour into me have decided that I can't have the FOLFIRI (Fluorouracil / Irinotecan / Folonic Acid) treatment any more as the side effects are now at the stage where they'd do me more harm than the cancer. Apparently despite helping shrink my tumours it's also been quietly screwing around with my bone marrow and having too much more would cause my bone marrow to fail which, with characteristic understatement, my oncologist informed me was "not compatible with life".
Yeah thanks for that.
So now it's down to just one drug, the monoclonal antibody Cetuximab. I did blog a bit about this drug earlier this year but essentially its a clever little thing made by combining mouse and human genes and it essentially works by latching onto the receptors that make cancer cells grow and blocking them from getting the signal that causes them to divide.
Now this can just be dribbled into me for a couple of hours once every two weeks so there's no need to go through all the rigmarole of carting a bottle of the old chemo round for 46 hours and a further bonus is that this stuff doesn't make you feel sick. All you need is a whack of clorphenamine* and hydrocortisone to stop you going into anaphylactic shock (told you this chemo business is full of larks) and you're good to go. So all in all the treatment regime just got a whole lot easier, shorter and gentler but of course it's now just down to the one drug to hold the bugger in check whilst hopefully my own immune system can attack it which is a bit scary. It does feel like you're flying on just the one engine**
However the biggest bonus is not feeling crap after treatment. So as soon as I'm done here I'm off for a celebratory burger at Byrons.
* Piriton to you and me
** But as a PPL holder I'm quite happy doing that. Twins used to scare me more.
Wednesday, 16 September 2015
Wednesday, 9 September 2015
Wingnut and Widget
You may recall some time back that at the start of this voyage of discovery I had to sell the two horses I had because they were getting to the stage where I needed to be spending time training them and I couldn't do that due to hospital appointments, PICC lines and generally expecting to shuffle off the mortal coil in the next few months.
However now that things have stabilised I have either done a very smart or very stupid thing. Please say hello to Wingnut and Widget
However now that things have stabilised I have either done a very smart or very stupid thing. Please say hello to Wingnut and Widget
Fig 25b: The meanest desperado ponies this side of the Pecos
I've been moderately sensible here in that these two (Widget is the skewbald [brown and white] one and Wingnut is the grey) are a pair of rescue ponies from a horse charity and when things finally go hairy and I have to go for a personal appointment with Epona the Horse Goddess they can go back and Mrs D doesn't have to go through all the problems of selling them. In the meantime I get these cheeky chappies to make a fuss of. They're not riding ponies, just a couple of ambulatory lawnmowers really but it's nice to have horses back here again and if nothing else it's keeping me fit wandering round the paddock every day collecting poo.
Fig 37: Charge!
As you can see here they're not very big (11hh and 12.3hh respectively) so they're cheap to feed and easy to handle and with any luck they'll be able to stay here for a good while.
And I get to lurk around tack shops for brushes and headcollars. What's not to like.
Fig 86a: The grooming parlour is open - shiny pony time
Sunday, 30 August 2015
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
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
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
Tuesday, 4 August 2015
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
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
Wednesday, 6 May 2015
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
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
Friday, 1 May 2015
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.
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.
Thursday, 12 March 2015
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.
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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.
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.
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