NHS, Cancer drugs and money

Arrgh its been a long time since I posted. I just thought that I'd repost a comment I maid on the beeb site over this cancer care money/drug debate shambles that's unfolding. People keep saying that if the money for the cancer drugs gets a patient 12 months of extra life but if that money was applied to a heart patient, they'd get 5 or so then you have to go for the heart guy and leave cancer dude to die. The logic of that is that I should, therefore, be executed by the state because a bullet is a one time expense of 4p whereas my interferon is an ongoing cost of £8,000 per year which also ensures I will need further medical interventions...

Added: Friday, 8 August, 2008, 07:04 GMT 08:04 UK

Hmm. So its all about money.

I have Multiple Sclerosis and the PCT funds my Beta Interferon, one of these expensive drugs you hear so much about (£8k per year). I will need this drug for many years, possibly decades. It allows me to work longer and pay more taxes. However, if its all about money, a 9mm bullet is about 4p and its application to my head would ensure that I needed no more of the money I and my family have paid to the NHS through our taxes. How is that any different to this?

Shaun, Newhaven

Comment thread on the BBC

'Positive' Discrimination

This new positive discrimination thing is puzzling to me. Even before I had MS, going for a job meant taking the risk that you weren't the best and if you were as good as another candidate, it was going to come down to subtler things like who they thought it would most productive to work with (e.g. personality, face-fitting vagaries). Then I became 'disabled' (hate that word, a ship that gets torpedoed and can't move under its own power is disabled. I am a cripple, not a ship, I haven't had 'ability' 'dissed', I've had function destroyed. Crippled, you may say...) and it all got more challenging - what could I do and who could work with me without going as patently weird as my last employer in rural Sussex?

Now it turns out that being the best person for a job won't matter. Being a white male, employers are now positively encouraged to discriminate against me. Worse, I'm married (ick!) which implies heterosexuality so no browny points there. I'm hoping, in this bizarre identity-politics employment market, that having Irish ancestry will help (+ Ethnic points!) and, perversely, being a cripple makes me a minority and thus of greater employment tokenism value (+ Pity The Disabled points). I suppose I'm dismayed because I used to want to get jobs by virtue of being the best candidate. Now I guess I'll have to get used to ticking some bureaucrat's boxes!

The really, really perverse thing in what is already a pretty twisted matter, is that Melanie Phillips makes a fairly good pass at highlighting the iniquities and illogicality of this positive discrimination malarky. And I *never* thought I'd be linking to one of her posts!

Update

Well I've now spoken with the Dignity in Dying media director and should be doing some interviews for them soonish.

Dignity in Dying

Debbie Purdy has MS and is fighting to ensure that if she travels to Switzerland to commit suicide and her husband accompanies her, he is not prosecuted for 'assisting' a suicide. How 'accompanying' can be held to be 'assisting' is beyond me and, I hope, beyond the High Court Judges who will have to decide this case.

I expressed my support for this brave woman's case to Dignity in Dying and they have asked if I would be interested in doing some press interviews to put forwards this position. I've agreed to do a couple and to see how it goes and how everyone feels about it. I'm worried about my wife, mostly, as for rather obvious reasons she's uncomfortable with me having to contemplate suicide rather than being trapped in some shattered physical shell of a body with limited sensory input while clearly appreciating the necessity.

The idea of lobbying for it just confronts her with it in an uncomfortable way but I strongly believe that if I can do anything, anything at all, that means if I ever have to take the euthanasia option, I can travel abroad to do it and have my beloved wife with me to say goodbye without fear of her being prosecuted for 'assisting' my suicide and facing up to 14 years in prison then I have to do it.

The right to die

I don't want to die but a time may well (60% likelihood) come where I develop a progressive form of MS and head inexoribly downhill. When I can't see, can't move and can't touch, frankly, I don't want to be around. I'm not squeamish about dying, I'm, squeamish about needless suffering.

What this woman is doing is to ensure that when/if I die at a time and method of my own choosing is to ensure that my wife won't be prosecuted for saying goodbye and/or closing the door behind me, let alone for accompanying me to a more civilised nation which permits me to end my own suffering.

To hell with the Christians and other religious fanatics who'd condemn me to suffer, trapped in my own dilapidated shell of a body and/or mind, to satisfy their beliefs. Fuck them and fuck their non-existent God.

Higher

Well I've just taken my second dose; overall the first was alright but, perversely, I feel that my extensive youthful experiences with amphetamines and LSD gave me the intellectual tools to handle to psychological side effects. Wibbly-wobbly reality doesn't scare me after seeing the walls *breathe*. Man.

But overall, nowehere near as bad as I feared. Yeah, I'm uncomfortably high, yeah I'm scattier than usual but its only for three days and it does remind me why I stopped doing speed et al. Plus, its working. i do think/percieve that the hole in my vision is closing up, or at least its fluctuating within a smaller area of effect, if that makes sense. Damnit, I don't really have the vocabulary to explain what I mean.

Anyway, I'm off now to stomp about and annoy the dog!

High

Took the first gram of steroids tonight. Mixing it with orange juice, it tasted like the amphetamies I played with extensively in my early twenties. It reminded me why I quit.

I then got quite high, like with amphetamines, but am now a bit weepy (side effect: mood swings) which I sort of find funny (side effect: mood swings). Oh and a racing heart. Great.

Attack!

I've had a 'visual disturbance' (in this case characterised by a loss of some field of vision in the visual area associated with my right eye's upper right quadrant - I can't say my right eye as even if the issue is to do with my somewhat damaged right optical nerve, it could instead be in the image rendering area at the back of the brain where I've see huge lesions previously on an MRI) for now three days straight. Yes there've been fluctuations within that disturbance - sometimes it is larger, sometimes it is smaller - but there has been something there for 3 days. And that means it isn't a fluctuation but is instead an 'attack'.

I've hit the steroid button with my GP (well a locum as mine is away for a month. Grrr) so should be getting a prescription for ass kickingly high dose steroids this evening. If the chemist has them I shall be taking them tonight too. I'm not usually aprehensive about taking drugs. I took enough recreationally to lose the right to that. But I'm aware that i seem to have a shorter temper these days and am generally quicker to become emotional and am a bit worried about how that will interact with a drug known to induce insane rages in the sort of doses I'm going to be looking at.

Ah well, the wife is warned and I'm in the shed!

Work has me by the short hairs

Well work has been completely crazy lately and will continue to be mental for the foreseeable future. I'm doing 6 or 7 day weeks but the money's great and while I'm well, I've got to get it where I can. Being an openly crippled freelancer is getting me 2.5x what I earned at my old firm for pretty much the same work. Sure, my skills have improved but not by that much!

Anyway, that explains the absence of posts lately.

I got ill a few weeks ago and am having severe fluctuations now while I still cough off the last of it. I have to wait until the fag end of June to see if I have an attack or not which is a tense wait but at least this time, if I have an attack, I can get steroids from my GP to knock it on the head. Sure, I'll still take whatever damage I was going to but it will all be over quickly, allowing me to continue accruing disturbingly large sums of money for bog standard PHP work.

Pain

Usually, pain is caused when an injury site sends a signal along nerves to your brain and the pain centres contained therein. Pain killers, including opiates, work by blocking the transmission of this signal or at least degrading it significantly. However, there is a type of pain that is generated in the brain and not the body; it may *feel at though some part of your body is in pain but that's an illusion. It is all, quite literally, in your head. Painkillers can't block this pain and there is one class of drugs available (even on the NHS) to tackle this 'neuropathic' pain. The side effects are unenvieable.

I've had neuropathic pain before - usually its been the sensation of having a compass needle driven through the pads of my fingers. I have found, thankfully, that cannabis can keep a lock on it although I have to smoke pretty much constantly as the effects are only 10-15 minutes in this regard. My doctor has advised that if pot does the trick, stick with that as the prescription drugs are nasty.

Yesterday I had a really awful fluctuation in this pain symptom and my hands were wracked. I also manifested pain in my feet. Low on pot, i went through a few days worth in an evening in an attempt to dull this sensation. It worked, up to a point, but in the end I had to get really really drunk - not to dull the pain as in this regard, alcohol is a conventional painkiller, but to allow myself to become easily distractable so that my mind wouldn't remain focussed on what was happening to me. It worked but was the least satisfying drunk I think I've ever tied on....

Yesterday was, therefore, a bit of a shit day

Dazed and Confused

Today I've been really befuddled and terribly easily distracted. This hasn't helped with work but has helped me relate better to my hyperactive, ADD puppy. I don't know if this is a new symptom, a predictable cannabis side effect, a spin-off from the Baclofen or something more benign and unimportant. I have only felt this way, and suffered the nauseating dizziness, since starting in on the muscle relaxants....

That would be annoying as they really help my foot/walking but don't help the whole balance or work thing. Its like being seasick!

Half way there...

Okay, I'm about 20 pages into the DLA form. My PC has packed in so I need to jerry-rig a printer to spool off the supplemental material (lists of Consultants, mostly) and then crack on with the other half.

Its a bleak form focusing, naturally (I guess) on the negatives of your condition in turgid detail ('Just how fucked are you? How many times a day do you need help wiping your arse?' - these are the questions you become depressingly accustomed to when you become a cripple). Luckilly I trained as a lawyer so can handle Offical Bollocks Speak without wanting to blow my own head off - I do feel sorry for other people faced with this shit, though. I understand why its set up like this - to deter chancers/scammers and some legit applicants to keep the cost down - but it still sucks bigtime when you find yourself on the consumer end of it!

Disability Living Allowance & A Blue Badge

There's a thing called the Disability Living Allowance which you get for being a cripple. Its a paltry sum, at most, designed to come in a mobility and a care component, but its the key determing factor (it seems) for the state to decide if you're a cripple. Registered Disabled is, it seems, a thing of the past and the local Social Services (with whom you would register) poo-poo'd it. They ask about it (DLA) on the application for Disabled Tax Credit (worth up to £4.5k and the end goal in this form-fest!), on the application for a Blue Badge for disabled parking (the only truly useful thing that the state can do for me is to allow me to park on double-yellows for up to 30 mins!) and so on. So while it's paltry, its still the keys to the kingdom.

So I did the parking badge application today and got that posted and have started in on the conspicuously user-unfriendly, 40-page epic, Disability Living Allowance form. I should finish it by the weekend at which point I will be waiting with baited breath.

Drugs drugs drugs

After much faffing about and attempts to order, Boots finally got me some muscle relaxants, Baclofen, on Saturday. The maximum dose is 100mg and I'm down on 5mg - the smallest pill on the market is 10mg so I have to cut them in half which is good as the higher dose side effects can be show stopping - respiritory and cardiac depression. It can stop your heart and breathing, admittedly mostly in the elderly but still...

So I started taking them and to my immense suprise it relaxed my foot for the first time since I got some magic cannabis over christmas. This meant I could walk in a more mechanically-friendly way which in turn took the pressure off my arthritic knee. I know, I'm a wreck of a man. All of which was good. What was less good is that I was high as a kite all weekend. Absolutely spaced out - for the first time I could finally see what my peers had seen in Ketamine! Luckilly that passed by Sunday night and now its fine - either you build resistance to the side effects or I've got used to it - so at least I can work on it. Otherwise it will just have to be a naughty weekend treat where I relieve the pain and destress but have to vegetate in front of Dancing on Ice or Harry Hill's TV Burp... certainly nothing intellectually challenging!

The Swank Diet

I'm seriously looking at the Swank Diet for MS. I'm trying to get hold of a nutritionist to see if I can get my saturated fat intake < 20g/day without giving up red meat. You can read about it here, though its referenced in a number of other places and books which is kind of what's attracted me to it.

It may be unpleasant but its got to be less unpleasant than being bed bound and incontinent. Such are my choices, I fear.

Long time no blog

Okay I've been terribly slack and risked becoming a 'wannabe' blogger who starts well and then peters out. I admit it

I got over my attack in January - it passed in a couple of weeks which is down to the beta interferon, the cannabis or both. Since then I've made contact with my frankly excellent GP who got me appointments with both the MS Nurse and the new Consultant Neurologist. I don't see the nurse until the 19th March but the new Neurologist was dreadful. Proper old school - these are muscle relaxants, one of these 3 times a day, see you in six months. The whole clinical arrogance of 'you don't need to worry for I am great and I shall control your disease!'. Yeah, I wish it was that simple.

Turns out that the standard treatment for relapsing-remitting MS during an attack is high doses of IV corticosteroids. Nobody told me. Which is arguably negligent and makes up a good plank of my desire for a '2nd Opinion' (e.g. to see somebody else). There was more crapness around the subject of Sativex where he was either wrong in which case confidence in him is dented or he lied to cover his arse and protect his NHS status. Subsequent information about the guy he replaced, from within the NHS, strongly points to the latter.

Anyway a plan for this treatment is going to be put in place; I reasoned that a week in hospital spaced out on drugs that allow me to be a moody bastard for the duration beats the hell out of a couple of months debilitated and unable to earn money.

Meanwhile I'm trying the muscle relaxant (picking it up today) and have managed to score some viagra to address another little MS gift. The mind is strong but the flesh is weak, damnit! Tho actually I'm a bit worried about my mind since I read a load about the pernicious effects of MS on the intellect and am finding it tricky to concentrate atm. That's much more likely to be the cannabis, I fear! Still gotta KBO (keep buggering on).

Superstition

So far my vision has stabilised; by which I mean it has got no worse and it has got no better (well, maybe a little - just enough to be adequately within the bounds of wishful thinking, anyway). I don't know if that's because this is merely a bad fluctuation or if its becaue the beta interferon is working to make the effects of the MS milder (and I did take an injection yesterday...) or if its because I'm throwing sufficient quantities of cannabis at it to stymie the effects.

And that's the problem. Maybe one of these things is working, maybe none of them are and this is merely a mild episode but because I cant know for sure, I have to keep doing all of them to ensure I get the beneficial effects again. I mean, what if I didn't do them and then suffered a serious attack? Why take the risk?

The rational bit of my brain kicks off at this point, skeptical of my mind's ability to construct a sketchy superstition out of inadequate evidence. People do tend to look for traditional causal relationships where none may exist. What if the pot and the rest is just a manifestation of that?

The horror is that I can't know but will probably get to find out with experience.

The Price of Illness

I've been ill for a few days; I don't know if I caught a flu and my vaccinated immune system fought it off or if I just had a cold but I definitely had something. I'm pretty much better now but my MS has flared up in response to whatever the hell it was firing up my immune system.

What this means is that all my previous symptoms are flaring up (for up to 48hr periods) - I have shooting pains in my fingertips, a really stiff knee and ankle/foot and a big chunk of my vision fell out earlier this afternoon in what is probably a visual field issue but could be a new thing in the muscle that focuses the eye... And just when I'm meant to have a sight test for the DVLA. There goes my license! Hopefully all of these things will pass withing their individual 48hr time limits as otherwise it would mean that I'm actually having an MS attack which would do more permanent damage to my central nervous system.

Other than all this, my mind has turned to lining up work for February. I am going to start going to Brighton New Media 'freelancer' meetings to do some networking/schmoozing starting on Monday with a free drinking session at the prestigious Linden Labs offices in Brighton.

2008

Well after my earlier bout of self pity, I pulled myself together, caught a cold/flu (despite having been vaccinated) and got a bit drunk with the wife on NYE.

The cold or whatever it is has caused my MS to flair up and I'm currently experiencing fluctuations in all my previous symptoms, from dodgy hands and feet to piss poor balance and intermittent issues with my vision. I've been taking interferon, though, so following the stats that 60% of flu cases result in the MS sufferer having an attack within 6 weeks, I'm hopeful that any such action will be relatively mild and not brutal and unforgiving!

This is now the first year I've started with my diagnosis on the table. Its hard to say what to make of it all, really. I mean, its a pretty cruel disease, nibbling away and sensation and physical capacity then restoring it just long enough to make you really miss it when it snatches it away again. On the other hand, I'm kinda optimistic that there'll be improved treatments available before it has the chance to properly screw me up. That's not really based on anything except my naive optimism (not usual traits for me, I assure you!) and the exceptional confidence I've had in the people who have been involved in treating me, their honest intellectual curiosity about what is, objectively, a pretty fascinating condition.

I've decided to give getting hold of Sativex a go as I know that most strains of cannabis appear to have some impact on my symptoms and so there's a reasonable chance that Sativex will be close to one of them. I want the beneficial effects of cannabis without the bullshit of smoking it, getting stoned or annoying the wife. That's definitely a goal for me this year.

Anyway that's for the future... for now, Happy New Year!