Activation day

Just returned from activation and, I have to say, I am getting SO MUCH from the CI that I can't quite believe it...and all after four hours. Voices, trains, doors, levers, footsteps but, most important of all, the sound of my son Alex speaking to me. Four hours. Advanced Bionics, you have my profound admiration.

Blogging again soon, but for now it feels like the hope has returned.

Next day: ...and the wonders continue. I am hearing so much without any adjustment beyond the setup that it is quite unreal. I have just (and I can't quite believe it myself) had a meeting in the covered quadrangle of one of the main university buildings - a bustling meeting place if ever there was one - and held a perfectly good conversation with a colleague without lipreading on my part. I am astounded. The train journey to work was a little surreal (trains passing my train sounded quite eerie!) and the swish of cars reminded me of Michael Chorost's comment that, after his switch on, that was one of the things that impressed him.

Thanks for the blogs...

Becoming a CI user isn't easy, but it is an extraordinary experience. That's why I wanted to take time here to thank the many many CI users whose blogs, webpages and columns have been a personal inspiration thus far for me. People like Abbie Cranmer and Jennifer Thorpe have been trailblazers for many of us - telling of the experience of unilateral or bilateral implantation as it is, with humour but also with enormous honesty. Committing to a CI is as much an emotional journey as a physical one, and their openess and candour has been really important. To all of you guys blogging away about the experience of CI life, thanks. You're an inspiration.

Can we turn off the noise now?

Funny experience, post-op, sitting at home or at work with the worst case of tinnitus ever. It's not always like that, but when it's at full strength, it's pretty debilitating. I can usual switch off from it, but this is an order of magnitude worse than 'normal' (pre-implant) tinnitus.

Will anything change on activation day (6th January for me)? Or will the tinnitus stay this way? Could go either way. Oh, and the musical hallucinations have stayed. Or got worse.

Back at work

...but feeling still pretty knocked about, even after ten days of working from home and resting. Still, the silence (despite the tinnitus) is a rude sensation. I now hear nothing, but - remarkable thing the brain - I find myself kind of 'imputing' sounds. So much so that, if I didn't know better, I'd say that I 'heard' the doors of my London Underground train swish shut this morning. I am assuming that the brain is trying to be comforting. Now that I know I am waiting for activation on 6th January, I am getting used to the idea of a silent Christmas. Perhaps 'Silent Night' has never been more appropriate....

In...and out

What an experience. A five hour operation, and - as the picture suggests - I was feeling pretty rough immediately after the whole thing. The length of surgery meant that I had to stay overnight, which was unexpected - I'd planned on being home straight away. (The wretched picture is taken in dim light on the only thing I had to hand, a mobile phone! And yes I had pretty much just sat up after surgery that minute. Not the most appetising image or advertisement for surgery at the Royal National Throat Nose and Ear Hospital). As ever the staff and specialist clinicians were both professional and caring. Now all we need is for the aggravated tinnitus to stall for a bit, the pain to subside and the activation to take place...and then a slow and winding road to regaining some hearing or sense of sound from there.

Anyway the implant is in, two weeks to clinic appointment and a period of rest and recovery until then. No date yet for activation, but I'll take it one day at a time.

I've joined the CI tribe.

CI implantation date

It's happening. 20th November.

I'm afraid tickets are not available for the event...

C-Day?

Just back from a holiday in Brittany (picture to left) and, well, here at last is a sort of conclusive date for CI implantation surgery. It's, erm, sometime in September, or October...or maybe November.

Now I say this not to belittle or descry the good people at the RNTNE Hospital - they are terrific people, doing a fantastic job - but to point out something very important about the nature of health care, at least in Britain and in the National Health Service. The NHS is a remarkable institution, making health care available free at the point of use for all in this country now for 60 years; it is a great thing, cumbersome at times, and liable to being 'experimented upon' by politicians, but overall - as Sellar and Yeatman said - a "good thing".

But what it is not good at doing - and is actively trying to get better at - is managing patients as individuals and seeking their welfare first and exclusively. Trusts (the organisations that run our NHS) have to balance patient needs and patient interests on the one hand with resourcing issues on the other after all. Now it is evidently easier to do that by finding a slot for a CI operation rather than deciding on one with the patient. After all, put simply, skilled CI implantation surgeons are not that thick on the ground, whereas deaf people in need to a CI... The NHS is going to struggle to meet the aspiration our current crop of leaders have for 'personalised health care' and I wonder whether it isn't actually too much to ask of it.

No, I don't mean that it is too much to ask of the NHS to ensure that patients are involved in decisions about treatment and care, and no I don't mean that it is too much to ask that patients get to express a preference about where they are treated, when they are treated and by whom.

It is too much to ask, though, that the NHS should invariably offer the kind of open-ended commitment the government seems to be suggesting may possible - that I can have my CI implantation surgery on October 12th at 2.30pm, done by Professor X, possibly even under lights provided by the XYZ Corporation...

For all of those reasons, my reaction to the broad window timing for my own CI implantation is sympathetic and philosophical. After all, I am getting excellent care, the promise of a high quality team in the operation and implantation - and all at no cost.