MEDICAL MATTERS

[Tripps]

Will be thinking of you today . . . .

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[Stanley]

Thanks to all of you. I was in bed at 21:00 so up an hour earlier. All is ready except for walking Jack and a last disinfect of the crumbling pile. Susan picks me up at 06:30.

[Tizer]

Any news about Stanley yet?

[PanBiker]

Been in Leeds most of the day and only just got back. They may have kept Stanley in a little longer to make sure he is perfectly OK before discharge.

Been for more neuro physio today with Laura, she says she can see an improvement both in my overall stature with the work on my scapula and in my standing and sitting. My walking is improving also and she wants me to try a few different exercises on top of the ones I am already doing. I feel myself that I am making progress but the travelling and the 1 hour session today has made me proper ready for my tea and a sit down. More photos and video's for her project. She wants to see me same time, same place next week to see if the slightly altered regime has made an impact. In the meantime she is going to see if she can get me further neuro physio sessions nearer home to take me forwards even further. I know it won't be at Airedale as they don't have the neuro skills. All good though and heading in the right direction.

[plaques]

Ian it may take a while but you'll get there in the end. Strange thing are these nerve signals. With Mrs P the Guillain-Barré syndrome left her with leaky nerve sheaths. The signals from her brain leaked away before they reached the intended target. During recovery watching her trying to eat had its funny side. A spoon full of food started off heading towards her mouth but would finish up in her left ear. Gradually it all came together again.

[Big Kev]

Not sure how specialised the physio is at Pendle Community Hospital Ian, they were very good when I went there.

[PanBiker]

Turns out they probably miss diagnosed my spinal stenosis Kev. Mr Anderson and the Neuro team at Leeds concur that all of my problems down the right would be attributable to the tumour. The lower back and core exercises given then would help in making me more flexible and hence help in some way but did not address the dominance in my left side or the misalignment in my scapula with it's knock on effect to my hips.

Tom at Barlick (same team) did sort out the torn tendons I had in my shoulder a couple of years ago though. He eased that to allow me to exercise by strapping and lifting my right shoulder blade. I have been given further stretching routines for my right shoulder to force my right leg to take more weight as reaching upwards automatically makes your left heel rise and so gives dominance to the right. I think Neuro skills start at Burnley Lancashire way.

[Stanley]

"All good though and heading in the right direction" Lovely Ian, I hope to be able to report the same eventually but at the moment I am not out of the woods yet. See the sitrep below.
To add to my frustration I had Maz syndrome this morning, the site wouldn't let me in using the normal login button on the masthead which has always worked before. I eventually used the login panel at the bottom of the page and told it to remember me and that did the trick..... Here's the story so far....

I'm back home but nothing is normal. I am thoroughly baffled and not in the best of health or temper!
The facts....
The operation to excise the tumour in my bladder was pain free, fast, efficient and well managed. Recovery was perfectly normal and the spinal block soon wore off. By the afternoon I was walking about normally, the catheter was out and I was peeing as usual with minimal discomfort and no blood. I have not needed to take any of the strong pain relief offered to me, no pain at all, simply natural discomfort. So far so good!
As you can imagine the ensuing tests were exhaustive and frequent. The bottom line is that nothing will be clear about the excised 1 centimetre lump until pathology have done their stuff. The prognosis seems to be that it is almost certainly malignant and the crucial characteristic will be whether it is a surface lesion or invasive. To be on the safe side the bladder has been thoroughly infused with a first stage chemotherapy irrigation. In all respects I am functioning normally.
That's the good part..... The problems started for me as I was recovering and the team were doing very thorough tests, everything from BP and a cardiogram to innumerable blood tests. The first opinion was that I was doing so well that I could come home for complete recovery. Eureka!
Then the team fastened on a further slight decrease in my blood sodium levels. They suspected fluid on my lungs, I could detect no signs, breathing good, appetite normal etc. They cancelled letting me come home and after a slight cock-up where they discovered that the system had failed and a final blood analysis hadn't been done, this was rectified and showed the same slight decrease in blood sodium. This seemed unsurprising to me because it had already been picked up by my GP and he was pursuing it and I had been drinking masses of water as advised. I expressed my doubts about this and they immediately gave me a chest X-Ray which showed there was no fluid and as far as they can tell my lungs are normal but they still stuck to their original decision to keep me in.
I have seldom been so disheartened in my life, believe me I felt horrible.
After an hour's thought I put my feelings to Joe the doctor in charge of me and he agreed that my logic was sound but he still wanted me to stay in for even more tests. He did say that I could voluntarily discharge myself, get a further blood test from my GP and we could go on from there. This wasn't his preferred option naturally.
Looking at the two blokes who had gone through exactly the same procedure as myself who were both nowhere near as recovered as I was, noting that one was still peeing blood and the other thoroughly disoriented but still being discharged I went for the nuclear option which was to tell Joe that I wanted a voluntary discharge. He listened to my thinking and agreed that it was sound but still said he thought I should stay in. I made my very difficult decision and followed my original instincts and plan. Susan and Mick came for me and brought me home.
Mick said nothing but Susan thought I was doing the wrong thing so that made me feel even more disheartened but right or wrong I went with my instincts.
Not a comfortable ride home and I got to bed and slept soundly for about 4 hours as usual. Then things started to go awry again! Susan was carrying my overnight bag and this morning when I went to unpack it I couldn't find it anywhere! All I can surmise is that fraught as we all were, we left it in the car. Either that or I have lost my marbles completely!
So here I am growing a beard, my razor is in the bag, on my normal schedule feeling slightly shaky but otherwise fine. Peeing normally with absolutely no pain or blood and Jackless because Susan said they would bring him back tomorrow as he is fine where he is and they needed to get to bed. I shall go to the surgery this morning and make an appointment with Hassan for as soon as possible and go forward from there.
So, where are we? I have managed to upset everyone and in the process upset myself as well. But occasionally we have to take decisions like this and they are never easy. I look forward to some resolution in the very near future!
Love to you all. XXX

[Stanley]

07:00. Later at 07:00. Had my normal half hour walk, absolutely normal as far as I can tell. (And my mate Barbara at Barlic Bites gave me a kiss!)

[Wendyf]

Good news that the op went smoothly Stanley, you must be very pleased that you have come through it without pain and peeing normally. Colin would support you in your decision to get home asap. Don't try and do too much though, you need to take it easy!
Glad you are home, now take a deep breath and relax!

[Marilyn]

Age...makes you slightly intolerant, Stanley! How often have we heard folk agonising over their elderly parents?

[Stanley]

I've just been talking to Colin and he understands completely, nice to have a voice onside from someone who has been in exactly the same position and also discharged himself.
Maz, you weren't there! It isn't a case of age related intolerance it's simply the actions of an intelligent person who can recognise when we were moving into the field of avoiding criticism rather than straight, sound clinical decisions. The clear X-ray of my chest was the final straw! Dr Joe understood me and I think was supportive but couldn't avoid the corporate requirements. By electing to leave I lifted all the stress off him as well.
Susan has brought Jack back and told me that she was in shock last night, on reflection she is fully behind me and is pleased to see that I am functioning perfectly normally. I have bribed her with £40 as she and Mick are taking two of my grandchildren out to Batty's. I asked her if we were OK now and she gave me a big hug and a kiss so that's all right! The overnight kit was still in the car so I have it back. I can unpack it, have a wash and a shave and go for a sleep with a clear conscience.
I feel fine!

[Tizer]

I wonder if the decrease in blood sodium was simply due to what you describe as `drinking masses of water as advised'?

If Susan was in shock last night you must have been doing a lot of what my mum used to call `creating'.

[PanBiker]

I think if I was in your position I would have bit the bullet and stayed for another day or two until they had a resolution. Don't read anything into the delay in pathology results, the labs are swamped with work, not uncommon for results to take some time. My tumour took about two weeks in the system before the results came through, sheer weight of work in a beleaguered system.

I hope it all comes good for you Stanley and you don't get bounced back in.

[Tizer]

I can understand why he wanted to get out. When my dad had the op to remove a lymph gland from under his arm it went very well but they kept insisting on keeping him in for more tests...and then they shut the wards due to a norovirus outbreak. That was an awful time and they had to put him in isolation to protect him. He began to get confused then and we had to apply pressure to get him moved immediately after the closure was lifted to a small cottage hospital and then home.

[Cathy]

Wishing you all the best Stanley, nice to have you back. Sleep and keep a calm mind, take it easy.

[Stanley]

Cath, thanks. I am off to bed now for a sleep.....
Ian, if you had been there you would have been having thoughts like mine. I haven't mentioned the fact that all the staff vanished and basic matters like pain management for Steve the late arrival went by the board, I felt so sorry for him. He was in serious pain and even though I got the nurse to him and she went 'looking for the doctor' nothing had happened by the time I left at almost 22:00.
The main event, what I went in for, was perfectly executed and a success, it was the aftermath where the cracks started to show. I have talked to Wendy's Colin this morning who had a parallel experience and took the nuclear option as well. He has never regretted it. Time will tell, I will either die sooner or later and what they were doing last night, the way they were performing, didn't cut it.
Peeing still fine, frequent but normal and no pain. That'll do me for the time being. I have sent Hassan a message getting him abreast. We go forwards from here..... I at least have the satisfaction that I'm not allowing a situation like Tiz describes develop. Sometimes you have to take a stand.

[Tripps]

we were moving into the field of avoiding criticism rather than straight, sound clinical decisions.

Tough call.

Sometimes I think- what's the point of putting myself in the hands of an expensively intensively trained health care professional, who has dealt with hundreds of similar situations, and then acting against his advice? Then I think that in the field of

straight, sound clinical decisions

Dr Joe might just possibly know more than I do, so maybe I should do as he suggests.

Not an easy choice - but I would not criticise what you did. Given what I have read and heard from you over many years, I'd almost expect it. The good thing is that if you chose the wrong path - Dr Joe will still be there for you.

[Stanley]

Quite David. I found the situation insupportable and I believe Dr Joe respected that.
Had 90 minutes sleep.... all still well.
Never forget that I am 82 and something has got to fail eventually, this may be it..... It's a bugger but I can't turn the clock back. What I am protecting is my quality of life... That means I have a different point of view.
By the way, you should have seen the reaction towards my living will, final directive and LPA on terminal care. The systems at the Barlick surgery and Airedale don't talk to each other and I had to sign a permission to allow them to enter them in my Airedale records.

[PanBiker]

I haven't mentioned the fact that all the staff vanished and basic matters like pain management for Steve the late arrival went by the board, I felt so sorry for him. He was in serious pain and even though I got the nurse to him and she went 'looking for the doctor' nothing had happened by the time I left at almost 22:00.

At 22.00 you were well into the overnight care staff, which in essence means that there may well be one doctor covering a lot of ground. As to all the staff vanishing, I think if you had stayed you would have discovered that would not have been the case. Even on the acute acute care ward where I spent 3 weeks, overnight, priority is given to the HOB bays for those immediately post op and the seriously unwell. As to medication issued, nursing staff (and it matters not to seniority) can not prescribe directly, all meds have to be signed off by a doctor before being administered. I know Airedale is not as advanced in the use of electronic communication as LGI is, most stuff at LGI is done via Ipads and the networked computers, repeated in the written notes at the bottom of the bed. Doctors can be contacted a lot easier for additional pain relief when required. You shipping yourself out mid evening would add a little to the admin without doubt.

I never came across a single member of staff during my stay that did not have my best interests at heart.

Anyway you made your decision, I hope it was the correct one.

[Stanley]

Headline news. At some point someone mentioned the scab causing a blockage. Just passed a soft clot in one piece about 1.5centimetres across, looks to me like the scab. If so, that's good. Too much detail? Sorry if that is so but a welcome sight for me!

[Big Kev]

Good to have you back in Barlick, onwards and upwards.

[Marilyn]

Totally inconsiderate to night staff and fellow patients to decide to discharge yourself at that hour of the night.
Lights on, voices, etc...very disturbing for everyone. No ward clerk at night to handle paperwork...nursing staff who should have been tending to needy patients were tied up with YOU.
I wouldn't have played dutiful daughter either. I would have said "catch a cab home!"
Sorry to be so blunt, but it's the truth.

It's too early to be passing scabs. They wouldn't have formed yet! They will pass in about 4 weeks.

[Spinningweb]

Stanley,

Nice to hear your back in your own surroundings, and take it easy.

[Stanley]

Hope you are still progressing well Ian.
Thank you all. Good sleep, 6 hours straight, last night.
I had my normal walks yesterday, half hour in the morning without Jack but the others with him. Tiny trace of shakiness but otherwise fine and I enjoyed them.
Maz, calm down Dearie! I did not disturb anyone, there was only one bloke in the room, Steve, and I was having a conversation with him to keep his mind off the pain he was in. Scab or not, it was a homogeneous solid clot and good to know I could pass it with no problem. Took support stockings off.
All my appointments with GP etc. sorted.
One small thing, when I was at reception at Park Road and asked for urine bottle the lady went to get it and I noticed the colour of the cap, it was red. So I asked her to be sure she gave me the one without boric acid in it. She took it back and changed it without a word. A training issue?