Around this time next week, if all goes well, I will have two electrodes implanted deep within my brain, positioned stereotactically into the subthalamic nucleus. One on each side. I’ve outlined other possibilities in previous blogs but now is the time to put those transient fears and largely unfounded misgivings to one side. Now is the time to focus on success, to clear my head of negatives. Like Owen Farrell lining up a penalty, his eyes burning with intensity as the visualises the path of the ball over the bar. It is my time to be a Zen master, to blot out all unwanted thoughts and to channel my energies into visualising that success.
So with that in mind, this will be the last blog before surgery next week. The last staging post before those broad sunlit uplands I’ve been promised. So let me.a few ‘i’s and cross a few ‘t’s.
My letters are written. And placed where they will be found if needed. And that in itself has been cathartic, a chance to put on paper my feelings and beliefs in my own words rather than in the clichés where sentiment normally skulks.
I’ve been asked many questions over the last few weeks. Some trivial, housekeeping almost, others almost philosophical. Let me answer some.
Am I afraid? That’s an easy question to answer but not one that can be nuanced easily. Yes I have some fear. I worked for many years in the anaesthetics department of one of the London hospitals so I know well enough how badly things can go when circumstances turn against you. But I also know that we do not celebrate the routine. The vast majority of successful procedures make no headlines. And the vast majority of procedures are successful. So am I afraid? I will probably have butterflies but I hope that’s as far as it goes.
Am I prepared? There are two ways of answering this. In the simple, pragmatic assessment – have I packed my toothbrush, razor et cetera – the answer is no. I’m still thinking of things each day that I might want and need in hospital. In the normal run of things one could ask friends and relatives to bring anything I’d forgotten. But in these current coronavirus times, visitors are forbidden. In any case my surgery is not taking place in my hometown. So visitors would be few anyway.
Am I mentally prepared then? I’ve had a lot of time to think about the future and what to expect. I’ve addressed all the possibilities, all the potential outcomes and consequences. Yes, I believe I am mentally prepared for the post DBS period. I don’t kid myself for one second that it will be plain sailing. I have seen enough of the inside of hospitals over the last several years to know that you are not left alone for very long. There are always assessments to be made, measurements to take, questions to answer. An endless parade of nurses, surgeons, anaesthetists, neurologists, phlebotomists, physiotherapists, psychologists, psychiatrists and who knows what else crowds around you. And medical students as well. and let’s not forget Gladys, who brings you that first cup of tea in the morning.
Why did I choose DBS? I don’t know that I really did choose it as such. In a way it chose me. I’ve had the condition 15 years and, for the most part the drugs been effective. As each year has passed, the doses have been increased, that mental accelerator pedal pressed a little bit harder, the brain running a little faster. You cannot achieve benefit without significant side-effects – you freeze, glued to the spot, when you want to move. And you thrash, arms windmill-flailing, when you need to be still. Eventually you reach that terrible point where you cannot walk without gyrating, grimacing and groaning. And by then you know it – you’ve run out of road. So you don’t really choose DBS. Eventually it’s your only real option.
Yes there are other experimental treatments. Let us not forget that DBS itself was considered experimental until as little as a decade ago. And to reiterate my oft repeated mantra “there has never been a better time to have Parkinson’s”. Treatments now are better than they were five years ago. In five years from now they will be better still. Neuronal growth factors, injected directly into the brain, although short on proof, have strong supporters and may yet, in one form another, prove successful. Neuroprotective agents may buy more time, delaying the point where you realise you’re out of road. Surgery by ultrasound or by gamma knife may replace the good old-fashioned scalpel and saw. This could even be the last generation of conventional DBS, with electrodes connected to wires and thence to batteries. In the future there may be other ways of tickling neurones. But for now, this is the best we have. So I’ll take that.
Am I excited? Yes, in a way I am. And I’m aware that the feeling is probably inappropriate. I want the operation to be over with. Somehow I see that as the endpoint whereas it is of course the beginning not the end. The end perhaps in as much as a goodbye to my previous shaking, stumbling self. But really the beginning of what I hope will be a better life.
Funnily enough I have been thinking a lot recently about Apollo 8, the first mission to go round the moon and return safely to earth. The mission control team had done all the calculations. They knew that the capsule would successfully enter lunar orbit and that it would re-emerge from the far side. Still, there was 30 minutes in which there was no communication from the spaceship and no way of knowing if it had been successful. A period of anxiety perhaps until Apollo 8 emerged from the far side to a mission control, shrieking and shouting with joy.
Just the same here. Wish me luck and I’ll see you on the other side.