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Fortunately my hands have been far from idle for as long as I can remember. I think it was about three weeks ago that I last contributed to these pages. And it wasn’t from lack of interest that I haven’t blogged in the interim but from sheer lack of time.
The last three weeks have been a bit of a mixed bag of very positive stuff and extremely negative things. With a bunch of the mundane, routine stuff of life in between. In high hopes of ending on a high note I’ll start with the negative.
In the last three weeks my old mum has been pushed around our local health trust finally ending up in a geriatric ward, that is fortunately a bit closer to my home than the institution she started off in. Her initial diagnosis of a crush fracture to her T12 vertebra turned out to be, if not an actual misdiagnosis, at least somewhat misleading.
The latest medical opinion suggests that this fracture is too old to have caused the recent bout of back pain that led to her hospital admission. Instead, there was some suggestion that they had detected some sort of growth on her chest when they x-rayed her, and nearly a fortnight ago she was given a CT scan.
Despite the fact that the medics had ample opportunity to give me the results of the scan over the last week (I have enduring Power of Attorney for my mother due to her level of confusion – talk about the blind leading the blind) I get the impression that no one wanted to be the bearer of bad tidings and yesterday I was forced to demand a response to my enquiries.
It turns out that my mother has a number of tumours on her lungs. They suspect that the bowel cancer she suffered from about four years ago has returned and has spread to her other organs. It appears that the cancer is now inoperable and there is no other option for mum other than palliative care. At least she isn’t suffering any distress or pain that I can see at the moment.
On a substantially brighter note, the consultation process for the forthcoming (substance misuse) Integrated Care Pathway in Wales has continued apace. And my compadres and I from our little (but growing) recovery support group have had a (probably disproportionate but) considerable input into the process.
We’ve met with the architect of the Pathway on a couple of occasions and last Wednesday we were given the opportunity to speak to opinion leaders and policy makers at a Welsh Assembly Government consultation workshop – to a very mixed response.
On an entirely personal note, last weekend I played my first public engagement in about six years (apart from my impromptu performance with the Ghostbuskers from the inestimable TAPE collective). Which, due to being completely unrehearsed, was extremely hard-work but was nonetheless very rewarding.
Three hours of improvised bass-playing is only to be recommended if you actually want painful blisters on your fingers.
Anyway, got to go and visit mum… L8rs peeps
I’ve been very quiet on these pages for the last couple of weeks largely because real life has suddenly become extremely hectic for me.
Last weekend my mother was admitted to hospital on the Friday, discharged on the Monday, then re-admitted on the Tuesday. As her only offspring and next-of-kin my time since a couple of days before her first admission has been taken up with dealing with healthcare professionals on her behalf (she’s quite elderly and a little confused). Visiting, meeting and waiting for ambulances, sorting out her laundry and keeping track of her movements within the NHS estate – alongside trying to keep on top of my various other commitments.
I managed to lose my driving licence last year so everything to do with mum seems to take longer or involve more people than it ever has before. Still, these things are sent to try us and at least since her re-admission they’ve managed to get to the bottom of the back pain that brought her to the attention of the medical profession (this time) in the first place. She’s got a crush fracture to her T12 vertebra and she’s getting physiotherapy and pain management medication for it.
Lots of other more positive things are also going on at the moment but unfortunately they’re being somewhat eclipsed by my mother’s health in my perception… Can’t really get past that I’m afraid :-(
It’s been another good week for yours truly, if not quite so eventful as the week before. Typically enough, the day after I was moaning on these very pages about my cold and how it had triggered thoughts I would rather not have had, the cold completely evaporated. So it’s not hard to imagine how chuffed I felt that I hadn’t succumbed to temptation.
Aside from all that, I again managed to get to the gym three times, attended the MILE programme twice, attended our recovery support group on Tuesday evening (where we welcomed a brand new member) and Matt S and I had another jam session on Friday afternoon (where we were also joined by a new recruit).
At this rate pretty soon I’ll have to think of a title for the project and perhaps even a name for the act. All positive stuff!
I also made a start on a close reading of the Welsh Assembly consultation paper on Integrated Care Pathways – which was somewhat less positive. To say that it’s dry reading would be an enormous understatement, and it’s only because I have some experience of reading and digesting official documents, that someone with my background has managed to hack my way through it so far.
However, of far greater concern than the likelihood of its being opaque to those who will be directly affected by the changes detailed in its pages, are its tone and the assumptions it is based upon. I found its tone highly patronising. It describes service users in terms of extreme passivity – service users are people to whom things are done to and done for, not people who are to any extent in charge of their own destinies and/or (dare I say it?) recoveries.
That the available evidence may demonstrate this to be true is surely the result of a self-fulfilling prophecy. An individual in treatment is told repeatedly that they have no control over the ways they are treated by the agencies they come into contact with and, lo and behold, they surrender that control without complaint.
Almost as worrying for me is the prospect of ‘information sharing’ between agencies, which is almost exclusively regarded by the paper as a ‘good’ in itself. Fortunately I am not currently in the position that I have to pass any of my personal details or history to any of these agencies. But if I were I would be objecting in the strongest possible terms to that information being shared with another (possibly unspecified) agency without my express permission being sought in each instance.
It seems from the tone of the document that a client would be required to sign a blank cheque for their information to be shared with whomsoever the professional in charge of their case saw fit to include – which further reinforces the objectification and dis-empowerment of the service user.
Rant over…
All things considered I’ve had another very good week. I attended a couple of very interesting and informative sessions of the MILE programme at Newlink Wales (on ‘Confidentiality’ & ‘Boundaries’), managed to get to the gym three times and attended our regular weekly ‘Wired In To Recovery’ meeting in Cardiff.
I participated in a particularly promising presentation to ‘The Bridge Project’ team at the local Salvation Army Hostel (they ended up asking us back to present ‘Wired In’ to their clients) and had a most enjoyable jam with Matt S (from this very site) which could very well be the start of something much bigger (watch this space).
However, unfortunately I also managed to contract a bout of the common cold. Suffering the privations of this mild viral infection I must confess has been a particular challenge for me, and an entirely unexpected one. As an opiate addict I wasn’t used to getting colds at all. I probably haven’t had one for about fifteen or twenty years, and the only sniffles I used to get were those temporary ones associated with withdrawal symptoms – sniffles that quickly and miraculously evaporated as soon as I managed to score.
So this cold has brought, quite unbidden, thoughts of using to mind along the lines of “I could just have a few lines and that would soon kick this damn cold into touch.” I’ve countered these tempting urges with arguments like, “Why jeopardise all the progress I’ve made over the last year?” and “This is a natural process and I’ve got to get used to contracting minor ailments like anybody else.”
Protection from colds is one of the very few benefits of opiate addiction, far outweighed by the much more numerous disadvantages.
Of course, in the end I just remind myself that the symptoms of a cold are only slightly less temporary than those of withdrawal. As the old adage says, “With the proper medication a cold can be cured in just seven days, but if left untreated it could hang on for a whole week!”
I shall reluctantly succumb to popular demand (well, Michaela actually) and explain the back-story behind my profile picture.
Firstly I would like to make it clear that there is no truth whatsoever in the scurrilous rumours being circulated by certain unscrupulous bloggers (you know who you are) – I did not wash my cat in the washing machine … much.
I actually chose this example of early digital photography (it’s really quite an old snap) as a temporary profile picture in the absence of something more recent and appropriate, because it happens to be one of my favourite pictures of a late, much-loved and greatly lamented family pet, and because I could see that once cropped it would fit quite nicely into the 270 × 270 pixel requirements of this site.
My former pet had a, by turns annoying and endearing, habit of putting herself wherever you were about to go and where her presence would cause the maximum disruption. It could therefore be guaranteed that, once a towering laundry basket was brought to the washing machine, said washing machine would already be occupied by a certain tortoiseshell feline who would instantly transform herself into a ball of claws if any attempt was made to extract her.
It was in an effort to document the fact that ‘pets do the funniest things’ that I took this picture. I hope that satisfies Michaela’s curiosity ‘cos that’s about the long and short of it.
Alistair
Apple
Brian White
David Best
marcellos
Matthew
Michaela
purplehearts
Ricky
Sarah Davies
Tony A