"Sex and drugs and rock and roll, is all my brain and body need, Sex and drugs and rock and roll, are very very good indeed." - Ian Dury
I’d much rather have cancer than dementia. Although to be honest if I had the choice of having neither that would be a far more agreeable option. I can just about cope with my my liver being knackered, my kidneys kaput, my lungs on their last legs, my bones buggered, my feet fucked and my pancreas playing up, but the thought of not being able to keep up with the plot is far too depressing a scenario to even contemplate. Although it has taken time to fully accept my diagnosis and its ultimate consequences, I have at least been able to do so, and I feel that even though my innards are riddled with cancer, my mind is as sharp and focused as ever. I would hate to think I was in denial or ignorance of my condition or not able to face the full reality of my situation without having it erroneously pacified by the censorship of significant facts or the misleading fog of irrational blind faith and its accompanying false hope. I much prefer to face my condition head on with a full and comprehensive understanding of the facts, however disconcerting they may be.
The current reality of the situation I face however, although I’m pleased to be able to accurately cognitively discern it, is alas not a terribly good one. I am due to have my sixth immunotherapy session tomorrow, but the fact is I have seen absolutely no improvement in my condition since starting my immunotherapy treatment almost two months ago. Indeed, my situation has never really fully recovered from my pleurodesis operation back in the summer. I remain incredibly tired and lethargic, I have no appetite and have lost a load of weight and I am still unable to control my body temperature so I surge from cold shivers to intense hot flushes that quite literally drench my clothes. I had invested a lot of hope in my immunotherapy treatment, but there’s little evidence to even cherry pick in order to give the illusion that it is doing any bloody good at all.
I have another of my now regular fortnightly clinics with Dr. Wheater again today and I have a comfy chair scheduled in for my sixth immunotherapy session tomorrow. It doesn’t however take Dr. Wheater long to look at me and come to the conclusion that the immunotherapy is clearly not working. He makes an executive decision to abandon the immunotherapy treatment immediately and start me on a new third line treatment straight away before my condition deteriorates any further. As much as I had invested a lot of hope in the immunotherapy treatment and as much as I wanted to give it every possible opportunity to work, his decision to switch treatments immediately actually comes as a blessed relief. Thank goodness in fact that there even is a third line treatment available to me, as that wasn’t the case when I started out on my first line treatment. Medical science it seems is thankfully still just marginally ahead of the spread of my wretched cancer.
Dr. Wheater did mention a new chemotherapy drug that had just been approved by NICE for NHS use shortly before starting my immunotherapy, but at the time I was far more focused on grasping at the holy immunotherapy grail. I’m much keener to hear all about this new chemotherapy drug now. The new drug is called cabozantinib and like the pazopanib I had for my first line treatment it is a Tyrosine-Kinase Inhibitor (TKI). Protein kinases encourage cancer growth so the TKI works by blocking these proteins and hopefully therefore preventing further cancer growth. The cabozantinib is a multi kinases inhibitor that is designed to block additional proteins not covered by the pazopanib I was on previously. It is in theory therefore more potent than my previous chemotherapy. As such, even though the pazopanib has ultimately now failed for me, hopefully the cabozantinib will have a few more tricks up its sleeve with which to try and out fox my cancer. For a while at least.
I am prescribed 60mg of cabozantinib a day along with a cocktail of other drugs to try and pick me up including 4mg of steroids (dexamethasone) and 30mg of slow release morphine sulphates. Last time I started a new course of chemotherapy Dr. Wheater prescribed me 6 weeks’ worth of medication to keep me going, this time however he only prescribes me medication for a tentative two weeks. He doesn’t say anything about being concerned about how well I will react to the drugs, but his cautious two week only prescription does make me wonder what I might be letting myself in for. After all, when I started the pazopanib last summer I spent the first week in Salisbury General Hospital with Ken from the SOS club.
I start my new drug regime the very next day. By dinner time I notice that for the first time in months that I’m actually hungry and I also realise that I have got through most of the day without having to go back to bed for a nap or sneak off for a quiet lie down on the sofa to rest my eyes. The day after, and I’m up early, wide awake and ready to go. I take my meds and take the dog out for his morning walk. Obviously the cabozantinib can’t have had such an immediate effect on the cancer, but I suspect the steroids are probably responsible for my sudden and most welcome return of energy. For the first time since my operation I feel like I have my mojo back and I have a ravenous new appetite for breakfast, lunch, dinner and indeed life.
After a week I’ve settled rather comfortably into my new remedy routine. When the alarm goes off at 7am I take the cabozantinib and morphine pills that I cunningly leave in a shot glass on the bedside table the night before. After my Jordans Country Crisp with Chunky Nuts and black cherry yoghurt I’m then ready for my beloved steroids, then on an evening I take a second dose of morphine and some omeprazole. If the pain gets a little too bad during the day I’ll also top up my pain relief with a quick swig of Oramorph which all seems to be working rather well. Contrary to what The Verve would have you believe, the drugs do work.
My sunny new disposition and return to form have come just in time. It’s conference season once again, and this weekend I have tickets booked for the annual QED conference in Manchester. At last years conference I was rather generously awarded the Editors Choice Ockham award for my work promoting critical thinking, reason and skepticism via my previous blog, The Reason Stick, and various other pieces I produced for the UK Skeptic magazine. I’ve been very kindly nominated for an award once again this year for this new cancer blog, but they gave me an award last year, so I don’t really anticipate getting another.
We arrive in Manchester on Friday evening and check into our hotel. While unpacking the suitcase I realise that the carefully selected bag of medicine I had prepared containing my chemotherapy, steroids, morphine, omeprazole, lopermide and metoclopramide are still sitting neatly in their bag on the kitchen table in Wiltshire. Bugger. I post my annoyance on social media and am immediately reminded by my friends and family that sudden withdrawal of steroids can be dangerous and that I need to arrange an emergency prescription. I can easily manage without the chemotherapy for a couple of days. I have some co-codomol that I can take every four hours instead of the morphine and omeprazole and lopermide are available over the counter so the main problem is the dexamethasone. Without the dexamethasone I am told there is a good chance that I could go in to shock later today and end up spending the night in hospital rather than at this evenings award ceremony. It seems unfeasible that I can just walk into the chemist, give them some old sob story about leaving my steroids at home and simply be given a nice new bag of steroids with a presumably high street value. It must however be a common problem, and one that has a pre-prepared solution. Indeed, I am reliably informed by the hive mind that I just need to ring 111 and get an emergency prescription from NHS Direct. I do just that, and ten minutes later I get a call back from an extremely helpful doctor who finds my story very plausible and is happy to electronically send a prescription to the nearest chemist. It was as easy as that. I wonder down to Boots The Chemist just down the road and ask if they have received my prescription. They look on the computer system, but there is alas no record of my prescription. Not prepared to give up straight away however the chemist disappears around the back only to emerge a few minutes later with a fax containing my prescription. I take my steroids and other substitute medications and head back to the conference for a fascinating talk on the development history of the 6502 microprocessor into the modern day ARM processors by esteemed computer scientist Sophie Wilson. It’s a bit of a niche talk, but it’s very much my niche.
Once again the drugs do their thing, I have a great day at my conference and I’m also able to spend the evening at the award ceremony rather than in hospital, which is rather handy because despite not expecting another award I actually won the award for best blog.
Oh, and what about the other items also alluded to in the title of this week’s blog I hear you ask? Well, they obviously just come as standard anyway, so there’s no need to write about that.