This is the Message Centre for Moving On
Moving On Started conversation Sep 11, 2009
I've been a bit quiet on here lately, partly because I'm doing a lot of Life beyond the screen, but mainly because I've been rather preoccupied with Matters Medical, which, when you total up all the medical stuff/results I'm either waiting on, have had investigated, am being currently investigated for totals to a fairly large amount of Matter.
The latest glitche began at the start of the year.
No, it began around 18 months ago, but it *became obvious there was a glitche around the start of this year.
Oh hell. This is so complicated - this is a story of being an ametuer juggler, trying to keep plates revolving around on long sticks with one arm tied behind your back and wearing a blindfold.
How else can I describe the mechinasions and complications of the NHS Administrative system?
It's one of those sort of stories.
ANYWAY... long story short, I reached the end of my tether in May - too many lost records, too many patronising and dismissive noises from a particular consultant....
(which is a shame, because as a consultant he really is second to none; brilliant at diagnosing ailments, and knowing the treatments or the even more specialized consultants to refer a patient to, but piss poor at treating the *person with said ailments)
...and the final grim realisation that that I've been lost in the admin system for a further 3 on going investigations
So I began the long haul of making an Official Complaint to the local NHS Trust. And that involves researching, sorting out the objective from the subjective, listing times, places, dates, treatments and above all, not only results, but an identifiable Plan of Action, everyone who needs to know can know about and act on.
You tried herding any cats lately? Because that's exactly what it's been like.
But I did it!
I had my offical face to face meeting with the consultant - who I shall refer to as Mr T, the Matron who runs the day ward I seem to spend a lot of time in, and an NHS Trust member who facilitates these meetings, who I will refer to as Silly Knickers.(because I can yesterday morning. It only took 5 months to arrange,
The arrangement was for Silly Knickers to meet my companion and I in main reception at 11.15 so she could usher us to the meeting in Matron's office at 11.30. We got there at 11.10, informed reception of our presence who in turn, let her know.
She finally turned up to usher us in at 11.35 I was not impressed, because she didn't have the courtesy to apologise for her poor timekeeping. I was very glad I'd got someone in my corner, my companian A; he's a great person, being one of those quiet, but rather powerful business chaps who never needs to raise his voice to get his p-o-v heard and acknowledged; it was he who helped me sort out the wheat from the chaff, and it was he who helped me collate all the necessary information I could offer.
This is what we need to get accross to them, he told me,do NOT allow yourself to become side tracked.
And don't look at them in a funny way, or let them know you *know they're fibbing, either, OK? Smile and nod, and then get back on track, right?
I didn't think I'd be not able to to bite occasionally - I don't suffer fools gladly and I've ever called a spade a pickaxe, so swallowing my pride I asked if he'd be my spokesperson.
So in we went, introductions over, and the consultant spitting anger from his eyes before we began, and me feeling a complete and utter in an unfamiliar black business suit, proper shoes, full fig (discrete) make up and my one and only business style blouse sticking to my back with the sweat of absolute stage fright, and clinging uncomfotably snugly to the ribcase.
A. read a short statement, outlining that my complaint was *not against the treatment I had received (it's been good, actually), rather that I was concerned at the lack of communication between the different consultants, between the different departments, and indeed, the lack of documentation being sent to the Support Nurses I occasionally have to see. If one hand doesn't know what the other hand is doingm, then how can we all work together?
Well - he began to, anyway. Mr T butted in after sentence 3 and said he didn't have time to listen to this sort of stuff, he was a busy man, and since it wasn't his department at fault, then why on earth was *he here anyway?
(I kid you not, it really was like that)
A. smiled and odded and continued reading.
Mr T. interrupted again. Matron explained to him that the complaint was *not about personalities, but with the administrative system.
A. continued reading, and offered a very simple plan for *everyone* (me included) so that what health problems I have that can be "cured" can be "cured", and what health problems I have that possibly can't be, can at least have approriate support and palliative care.
It boiled down to one request, really - could someone *please* be in possession of all the facts and co-ordinate my treatments, so that I can stop taking up valuable NHS resources as far as it possible.
Mr T began blustering - I've done this, I've done that, I've written to so and so... look, here's the letter, and so and so has replied...
So and so doesn't seem to have replied.
Moving swiftly on...
A. reassured Mr T it wasn't about personalities, that I had no complaints against his (medical) treatment and skills. Matron did the same.
I kept schtum a bit longer. I'm gonna this bloke in a mminute I thought. In the meantime, just smile and nod, and keep it on track.
More blustering - and each time, the silly bugger dug bigger and bigger holes for himself - he himself was proving my point over and over again, to *his* detriment. No one knew what the hell anyone else was doing, and that the whole treatment, had gone stagnent.
I was beginning to get the hang of this. My god, I thought, Silly sod - he's got all those letters after his name and he's absolutely useless at people! He's only clever with arseholes and bottomy things - I can take this bloke on and control the conversation. If I can manage 2 teenage boys, this little man poses no problem.
So I took a deep breathe, when Mr T started his defensive/aggressive act the next time, and reassured him this wasn't about personalities (etc), and the upshot was he held an impromptu consultation there and then and he's shuffling me off to the God of the Colorectal specialists up at Barts because he (Mr T) doesn't think I'm a good candidate for remedial surgery, (merely the last hope, a colostomy) but I may be able to discuss my concerns with Mr God, and waste his time, because he(Mr T) is far too busy to go thru all my notes as it's far too big a file.....and.....
I think by then, even he realised just how awful his bedside manner was and shut up enormously. Matron asked me if I'd care to stay behind *after Mr T had left* and discuss matters with her in more detail.
And I didn't wink...and I didn't allow the huge melon like grin I wanted to grin at her show, I just nodded gravely, and said, very mildly " I'd like that a lot Matron - I appreciate it. Thank you Mr T, Please don't let me waste any more of your time"
I don't remember anyone even acknowledging him as he left the room. Infact, I couldn't be asked to even say goodbye, and no one else bothered to, either. He's a busy busy man, after all.
After that, Matron took over the meeting - and the first thing she said was an apology for Mr T's attitude.
(This surprised me a great deal, frankly)
Right, she said; would you mind telling me what your medical problems are, as you see them?
So I did.
A. handed her a list of all the medications I'm on and for what purpose, and a list of Stuff what I have got not quite working properly, as I understood them.
He also asked my permission to tell them a bit about my background - and did(the abususive childhood stuff and the consequences as a younger adult) I thought he was going for the Hearts and Flowers card at the time but now I look back objectively I can see his reasens; Matron really *did* Need to Know. The physical abuse I suffered as a youngster may well have been contributory to my surrent situation. Fact.
Matron, who I shall now refer to as Sweetheat came up with a solution; she's taken it upon herself to take my huge brick of a file home with her and have a read thru it (and I have gladly given her written permission), and glean the appropriate information about my medical condition and will co ordinate my treatment.
I, in my turn, will regularly check with my GP to ensure I have all the information I need, and ensure that he and the support Nurse(s) are all au fait with what's going on. Matron Sweetheart has volunteered, in short, to be a mutual liason point.
Result, or what, eh?
I don't expect miracles. I don't expect I will magically become un disabled, and nor do I expect all of the problems with my gut to be magically disappeared. Some of the problems are mechanical, and there is no guarantee I'll be a suitable condidate for repair surgury, which will mean eventually I will have to have a colostomy - which I'd prefer not to happen, but if that's the case I will learn to cope with.
But I'd like to get to the root of the problem; I'd like to know which is organic, which is mechanical, and which problem interlinks/has a knock-on effect with the other problems, be they symptomatic or the reaction of one prescribed drug with another or whatever. If you want to ask questions, please do, but I really don't want to write a resume of which bits are packing up with me, it really is very tedious for me to do so - and more to the point, it's a tad depressing. I'd sooner concentrate on the bits of me that are still working and stay positive.
And the Consultant's secretary will Be Spoken To about her telephone manner yet again. With a bit of luck she'll be demoted to her true vocation, that of a gestapo interrogator. She really is not a very nice person atall. GPs receptionists are pussycats compared to her.
See? There really really is a god, after all
In conclusion, gentle readers, I have learnt this:
If an academically brilliant individual spends his whole working life looking at the general public's ani, he runs the risk of behaving like an [email protected] himself.
Do not let this happen to you
2legs - Hey, babe, take a walk on the wild side... Posted Sep 11, 2009
Moving On Posted Dec 11, 2009
I'm not quite sure *what I feel right now. Numb, I guess. Going on a bit weepy.
Just got back from Barts, after seeing "god" in the way of all things knowledgable about colorectal stuff. Nice chap, by the way.
We discussed stuff, I had one of the most thorough (and painful) exminations yet, and was told they can't risk operating or repairing any more without a very high liklihood of causing more and worse problems.
So I was offered a colostomy operation, once I've come to terms with the idea. When I'm ready, I have to write into Barts, let them know, and they'll do the deed for me.
Having just read thru their helpful booklets and seen what a stoma looks like, I'm not too certain I can cope with having one. They look so... well... squishy and vile and above all alien.
I haven't got anything much else to say at the moment.
Moving On Posted Dec 14, 2009
I'm going to carry on rambling about it "here" A60678507
Its amazing how much talking to the Sons has helped - the conversations with them are, by necessity, brief lately, because they work such long hours, but each of them said, totally independently of each other exactly the same thing:
"T'aint the most glamourous option mum, but if it's going to make you feel better in the long run, it's a good thing. Do it"
I asked youngest the question that had immediately worried me the most...if I have a baggie, would you feel any differently towards me?
Now Youngest is the most unempathetic, matter of fact, unsentimental little sod there is; hardheaded doesn't do him justice.
He just looked me up and down and said "Don't be so bloody *silly* mum - 'COURSE I'll still love you. You're my mum"
And I got a swift, hard hug and then he toodled off for another 10 hour shift.
And thats it; I'll still be "me" won't I?
Whether I'm someones friend, someones mother, or someones lover, I'll still be "me". Having something the size of a 50p peice on my tum to pass waste thru ISN'T going to alter how those who care about me perceive me. Only *I* can perceive me to the ill, if I let it.
So I'm not going to let it.
Suddenly I don't feel the world is such a harsh grim place after all.
Websailor Posted Dec 14, 2009
What wonderful son you have there, well both really. You really are amazing coming to terms with the 'idea' so quickly. It sounds as if you can make it a reality when you feel truly positive about it. Am I right in thinking only the necessary people will know?
If it is better than the alternative then go for it. I totally understand your feelings though.
Moving On Posted Dec 14, 2009
Yep - only those who need to know will know (as well as the meanderings "here"), but I'm amazed at how incrediably supportive and above all, Matter of Fact my friends have been; magnificent is the word that springs to mind, really.
Jan's offered to take time offf work if she can after the op to nurse me a bit, I've inveigled Wendy into helping me to get my flat in order and organised, from this week onwards, as I really *am finding keeping up with the housework a struggle these last few months... and she'll keep an eye on my finaces whilst I'm a bit off the planet when the time comes; if I'd trust anyone with my bank card it's Wendy, she's as straight as a dye.
Sue has promised to come and get rorcously drunk with me when I feel low
(not that we'd need an excuse, but joking aside, I know there'll be times when I'll melt into puddles of insecurity and quite likely self pity).
I've mentioned it to The Mother, but she didn't really take it in much... she was more concerned at the prospect of me not being able to visit her and keep an eye on her, but as I didn't expect any interest, concern or support, I didn't feel too crushed.
A. who came with me to the meeting and spoke up for me has been great - any help, anything I can do he said, I'll do it; just yell. And I beleieve he'll be as good as his word, too, he's a good person and a staunch friend...
And of course, there's the lads. Cheerfully callously and totally unsentimentally compassionate; I know they above all will give me a good shake back into positive reality if I get overly maudlin - once I've had a rant with them; they've never treated me anything other than "normal", and they won't do anything more than make sensible allowances. They do Tough Love very well indeed. And they know when to cut me some slack.
I've yet to tell June the School Mar'm and Sarah the Absent yet... but they'll be troopers as well, I know it. Aunty may witter a bit and offer prayers and go a bit dramatic on me, because thats how Aunty *is, but thats alright - everyone shows their care in a different way and maybe a few prayers might make her feel better.
I've had a feeling for a good while now that this would be the final outsome Webbie - for the last three year really, so it's not been quite as rapid a coming to terms as it may first appear.
I kept hoping it wouldn't, obviously; but I'm not daft, and I'm glad I at least looked at Worst Case Scenario ahead of time. It was a kick in the guts to have it actually *said* finally, but it's galvanised me into looking at the information, and not being afraid to look - I just need to learn to be less squeamish (I don't like taking giblets out of chickens much, I've never been very good as viscra(sp?))
And fortunately, because I've already had to come to terms with being "disabled" I've broken the back of the Biggie already - learning to accept myself as I am. The main hard work is already done in a way.
Once I can skin a chicken with equanimaty, I'll know I'm ready for the off.
Which remnds me.... suppers burning
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