If you can’t fix it, you gotta stand it
Question: What have the NHS and my body got in common?
Answer: They’re both fucked.
Last night I had an appointment with my neurosurgeon. Yes, last night – 7.15pm. Why? Because apart from doing his day job, which at the moment is covering at another hospital for another surgeon, as well as his own, twice a week he’s doing evening clinics until 9pm.
The appointment wasn’t like my recent dream, but I felt like I should have been the one saying something comforting or offering a shoulder to lean on.
My neurosurgeon is probably one the most caring and considerate human beings I’ve ever had the good fortune to meet, and he’s sure as hell the most caring doctor I’ve ever met, and I’m lucky that for the past four years he’s patched me up, and done whatever he can to try and make things better for me. He’s always said that he wishes he had a magic wand and could make me all better. From talking to some of his other patients, he says that to a lot of us. He always treats you like a person though rather than just a number, just another patient, and he always takes the time to talk, to explain, and to give you all the information and all the choices. He treats you like an adult and gives you the information to make an informed decision; he offers advice, but ultimately leaves the decision on what you want to do to you.
He works with kids a lot, and he’s a cuddly sort of guy. He tends not to dress in the favoured consultant’s uniform of suit and tie – his favoured outfit’s a bright red fleece – and he always has a smile and a sparkle in his eyes. Last night though the smile was pasted on. He still chatted and talked me through the available options, but the smile was forced, and as well as a hint of a five o’clock shadow (which I guess is inevitable if you’re working a 12 hour shift at least), he had an air of defeat, and a sad resignation which I’ve never seen on him before.
Back to those options – they’re somewhat limited to say the least, given the fact that I need to try and hold down a job, and work within the constraints of my various other medical problems as well. Given that my pressure was somewhat raised when I had my last lumbar puncture before Christmas, but not hugely so, kind of suggests that my shunt is at least working in a fashion – let’s just ignore the other problems it’s causing for now. Option #1 is repeated lumbar punctures, a return to days of old, but as me needing to be permanently anti-coagulated means a lengthy hospital stay, just for a lumbar puncture, I’d spend half my life in hospital. Option #2, he floated the idea of trying a lumbar drain to see exactly what my pressure does for an extended length of time, but once more there’s the lengthy hospital stay for the anti-coagulants, infection risks, and bleeding risks in my case. Option #3 is to remove the offending and somewhat troublesome lumbar shunt, or at least try a variety of new-fangled valves with it. Surgical intervention of any sort though requires a lengthy hospital stay due to the aforementioned anti-coagulants, and no small risk to me. Then with option #4 we turn to the even more troublesome ventriculo-peritoneal shunt which currently resides in my head no-where near where it’s supposed to be. The risk of leaving it be and hoping it does no harm is less than trying to remove it and possibly causing more damage and the risk of bleeding. Bleeding anywhere’s not too good, especially if you’re on anti-coagulants, but when it comes to the brain, if you get bleeding there you’re in big trouble.
So, we come to the final choice, the line of least resistance, and that’s the option we’re going for. It’s not quite a status quo, but more of a “suck it and see”. How much the pressure’s contributing to my ongoing problems and just how well the lumbar shunt’s working is the current subject of debate, so the plan is to tie it off and see what happens. It’s a relatively minor procedure, and he can do it under local anaesthetic. The risk of bleeding is relatively low, and should be easy to control. Minimum amount of time in hospital, and minimum disruption. The major risk is that with a tied off shunt the pressure shoots up, forcing the issue, and then we’re back to the choice of what to do about it.
So, when’s this going to happen? Pick a number, double it, multiply by pi, divide that by the number of odd socks in your sock drawer, multiply by the sum of this Saturday’s lottery draw balls, and add one for luck, and you may or may not be somewhere close to an estimate of the current length of the waiting list.
My surgeon has no idea. He has no control over the waiting lists any more. The back end of last year he said he thought they’d got things under control, but now things are crazy and he can’t even hazard a guess. Waiting lists and priorities are now out of the control of the consultants, and firmly under the control of the administrators. Patients get taken off his list and put on other surgeons’ and he doesn’t know whether the patients get consulted about it, but he sure doesn’t. The man who always looks so calm and reassuring, last night looked pale and dishevelled and defeated. He’s working hours that no-one in a twenty-first century health care system should have to work, with no support from the ubiquitous administrators, under pressures I can only guess at, and working miracles on a daily basis that go unrecognised by all except for those whose lives he saves and changes for the better, and in return the administrators demand ever more patients be seen, be treated, be shuffled around as hospital numbers and targets, and he has no control over any of it. He didn’t say so in so many words, but the NHS is going to hell in a handcart.
So what do we have here? We have ourselves a god damn bitch of an unsatisfactory situation. That’s a phrase I’ve used on many a site today in many a rant. The words fit though. My body’s quietly getting on with it’s own life independent of me, slowly continuing it’s journey to who knows where in it’s quest to beat me and break me. The body may be a miracle of nature and a multi-system miracle, but when so many of those systems start breaking cogs and missing pings, dropping packets, and coming up with 404s, and locking the system up with so many BSODs (and my apologies for way too many mixed metaphors), trying to live with those BSODs and system freezes, out of memory stalls and crashes on a daily basis gets harder and harder. My life is on hold for god knows how long due to the conspiracy of my own body to thwart me at every turn, and the total ineptitude of the NHS and it’s broken systems and policies and targets, and there’s not a damned thing I can do about it.
Hell, why not continue with the mixed metaphors and throw in a bit of cowboy action as well!
Ennis Del Mar: If you can’t fix it…you gotta stand it.
Jack Twist: For how long?
Ennis Del Mar: For as long as we can ride it. There ain’t no reins on this one.
~~Brokeback Mountain
My surgeon has no magic wand. He can’t fix it, so I guess I gotta stand it. And there ain’t no reins on this one neither.
Today I’ve been trying hard to remember that earlier this week I found my smile again.
Michelle responds:
Posted: March 7th, 2008 at 7:38 am →
Rachel, I’m so sorry you’re having such hassles with your health right now.. and that you’re suffering because of our stupid NHS.
Carol responds:
Posted: March 9th, 2008 at 11:41 am →
Aw jeez, it never ends does it? At least you have a neuro who approaches the human state and who knows maybe he will be open to contacting David Wheldon about the possibility of infectious causes for some of your problems? http://www.davidwheldon.co.uk/ms-treatment.html
Chlamydia Pneumoniae ( CPN ) just loves to colonise surgery sites.
Although he developed this approach for MS, the bacterium has been found in many other conditions and he is the UK expert. Like your neuro he is very human – who else would see you wearing sweaters and sandals? He would be very willing to talk to your doctor to explore the possibilities of non-surgical treatment – who knows the abx may just deal with your blood pressure problems as they did his.
Nil carborundrum – or something like that!