A week and a bit on.

One week on we're progressing. After the RBH fiasco we decided to contact my Surgeon at St Marks, I called her Secretary and suggested that if we sent some pictures of the stoma (yes I'll spare you those!) could they diagnose over the Internet? - she agreed and later we got a call from the Stoma Nurse who took the view to watch and wait. So far the swelling is about the same but the bleeding and more important, the black area, is receding. So we live to fight another day - I wonder what the next challenge will be?

Where did that day go?

First day that the Sun comes out and where are we? RBH!

It started with the stoma doubling in size over the last few days, on Friday night, about 10:30 we noticed the bag was a quarter full of blood! - you sure you want to read on? - and an area of it had gone dark grey towards black. There was no pain or discomfort and it was working as it should, but could it be left till Monday for the GP or Stoma Nurses to check, or was it urgent? We elected to see how it was in the morning (I still, with all the ambulances we've had, have never had 'blues and twos' - could this be the one!)

It was much the same in the morning but it still left the dilemma - wait or go? Being Saturday the surgery was closed so we had the brainwave to try the NHS 'Walk in' place in St Mary's Butts - just looking for simple advice. we left about 10:30. It's a nice place, well set up, light, clean, and comfortable with attentive staff. We were told from the outset it would be a 2 hour wait - probably better then A+E and a lot nicer. I filled in the obligatory questionnaire and was given a number, a lucky draw ticket! On the hour we were called into 'Triage' and a nurse quickly established he knew nothing about our dilemma and passed us on to the a GP, who was a little wiser but not much, still she did ring the RBH, and spoke to the on-call surgeon - which we could never have done - he said 'send him in' - that's all I needed! - I'm going to get a flat in the 'Berks' it will be nearer and easier! She had to check my blood pressure to see if I was able to travel to the Berks unaided - I passed the test.

We got to CDU (Clinical Decisions Unit) and I was admitted, yet another wrist band - I should have collected them from the start, I could get in the Guinness Book of Records - the most admissions in 3 years! They tried to get blood, but gave up, no change there! I was seen by a Dr who gave me the once over and said he'd talk to a colleague who turned out to be one of the team who tried to do the reversal. He was in two minds, operate to trim the 'gangrenous' bits or push it back in and hope it sorts itself out in a day or two, 'the dark bits will probably slough off'. We went for the latter, I've had enough operations and he answered my main query - urgent or not - it seems not.

We were out of there in 5 minutes - the shortest admission in history. We got home about 5pm. We hope it will settle down in the next week or so, if not I'm inclined to try and bring my October out-patient appointment at St Marks forward.

What a Difference 3 Weeks Make!

We saw the "shoulder man" on Tuesday and he said I can leave the shoulder holsters off - Hurrah! they were a pain, I couldn't scratch my ****, I had to sleep sitting up - not good.

Interestingly he didn't recommend physio' at the moment, due to the type of dislocation. He's anxious that they could go in 'all guns blazing' and that's not good for posterial bilateral dislocation (that's both, out the back), he said just do what's comfortable and they will strengthen in time with normal use. Physio later maybe!

I am getting used to not driving, can bus to the office - free to wrinklies after 9:30. We went to Henley on Monday - 'Marigold Hotel' (if you've not seen it, do - it's great!) and got the train back, no probs!

Looking forward to Wednesday (11th) the Olympic Torch goes past our door! good way to start the day!

Home again - for now!

After replacing both shoulders in their sockets, one, the right, popped out again, so I had to go down once more and have it re-positioned - I'm now in two shoulder braces in the hope they will maintain the position till surgery. I think this story has a long way to run yet!

We got home at 5pm on Friday (15th) after running the gauntlet on Heygrove Ward after starting out on Kennet Ward. They wanted me to wait for my meds to come up from the Pharmacy before leaving. We eventually extracted 200mg of the necessary for tonight and Rob will pop in tomorrow to collect the main supply - it could be midnight before the singleton porter completes his round of delivering the meds.

I need to go back in for an operation to reposition the muscle into the damaged groove in the ball of the joint, right and maybe left too. It will limit my mobility but stop them popping.

The MRI Head Scan didn't show anything worrying so I will probably stay on meds to stop the fits until the EEG in Oxford in a few weeks time, meanwhile I'm to have my hernia fixed on the 5th July so it will be hello RBH yet again!

Early Hours in A&E, Royal Berks.Hospital, Reading

Last Friday night (8th June) at 11.45pm, while we were in bed asleep, Roger had another seizure. We haven't even attended the MRI scan appointment yet, that was made when the first fit occurred in April. It's on 28th June the earliest they could manage.

Anyway! I knew exactly what it was this time. I thought Oh No! Not again! It lasted about 4 minutes, during which time he bit his tongue exactly like last time. I thought to myself now I know what's happening, provided everything goes the right way, I won't call an ambulance, but just monitor him myself.
I have read up on the internet what to expect, and if I can spare him a trip to A & E department, then I will.

However, when the seizure had passed, and Roger could once again speak & respond, he told me his arms hurt badly. That was a concern, so I rang for an ambulance, and we landed in the A & E dept. of the Royal Berks hospital. We've been there before many times when it's been horrendously busy, but luckily it didn't seem particularly 'pushed' in the early hours of Saturday.

By this time Roger was in such pain that he'd been put on Entinox, but was still screaming with pain, despite this. He was taken into the x-ray dept. with me following on, wheeling his cylinder of entinox.

The radiographer was very thorough and took several shots of Roger's upper arms and of his chest. He interpreted these x-rays as normal. Nothing broken..........nothing dislocated...........therefore normal.
Roger was taken back to his cubicle in A & E, still shouting in agony.

THEN THE NIGHTMARE STEPPED UP A NOTCH OR TWO.........OR THREE!!!
Enter.... the doctor, who said "I've studied the X-rays, everything's normal, you can get dressed and go home now." I said "He can't move his arms, he is screaming in agony. How can I take him home?" She replied "It must be muscular, once he starts moving it will ease. Be getting him dressed! I'll bring him a cup of tea." I said "How's he going to drink a cup of tea? He can't even hold the cup." She said "You must start moving him very slowly." By this time Roger was pleading for help. His face was pale grayish and sweaty. I said to her "PLEASE! I don't mean to doubt you, but Roger has a high threshold for pain, and look at him! I won't be able even to sit him up without Entinox or Oramorph or somesuch!" NB. The Entinox had run out by this time. Unbelieveably she said, and I quote "No! we can't give him those, as you won't have access to those drugs when you get home, so there's no point in starting them now."

A ward assistant started to try to gently move Roger, but the doctor said "No! leave him! let "the lady" do that!" I'm Roger's wife of 42 years standing, and she calls me "The lady."

Roger's pain was so great that I could neither move him, nor was I about to try, and when the doctor came back I told her. She said this: " The X-Rays are normal........nothing broken......no dislocations..........so what would you have us do?" I said "Please help him!" She left the cubicle, returned five mins. later, and said "There's a specialist 'bone doctor' coming down from Orphopaedics to see you..........so that will be a third opinion." She then left us alone in the cubicle. Ten minutes passed, and a 2nd year doctor (who was Greek) from Orphopaedics appeared. He spoke very good English. He examined Roger very gently and thoroughly. He was diligent, kind and instantly trustworthy. He said to Roger "I've studied the x-rays, and they appear to be normal, but I can see you are in a lot of pain. I want my boss to look at them (he will be here at 7.00am ) to see if there's anything I'm missing." He had been told that we were being sent home, so he told us that he would organise some more Entinox, so as to enable Roger to dress. He asked us for our telephone number in case his boss wanted us to come back. I know this doctor went off to ask for some Entinox, but after he left, his request was ignored, and we were ignored and left alone.

It felt like we were taking part in one of those 'How Not To' training films.

Suddenly a porter appeared saying he had instructions to move us out. Without further ado he wheeled Roger out and up the corridor. I hastily gathered our bits and ran to catch up with him. We were put in an assessment room. The atmosphere seemed very frosty, except for Gertrude, a ward assistant, who was kind to us. There was another ward assistant there. She told us we had been 'breached.' I asked what that meant. I said "Does it mean we've had our 15mins. of fame, because that's how it feels?" She said "Leave it at that!"

Roger was then told by a ward assistant to "Use his hands to shuffle across" from the trolley he was on, to the bed. He said "Why won't you listen to me? I can't move my arms!" He was screaming and begging them not to hurt him, when they man-handled him across to the bed I think he nearly blacked out.

Then...... in walked the Greek doctor, with his boss from Orphopaedics. His boss examined Roger, told him he had studied his X-Rays, and was as sure as he could be that Roger was presenting with a most unusual postereal dislocation of the ball and socket joints of both arms. He said that it does not easily show up on X-Ray, and explained it's caused by the muscles at the front of the shoulders pulling against the muscles at the back of the shoulders, and in doing so, displacing the ball and socket joints. He said Roger would be taken to theatre, put out for 15minutes or so, whilst they manipulated the sockets back in place. This is indeed what happened, and Roger was instantly relieved and pain free.

Thank God for the Orphopaedic doctors, for believing that despite what Roger's X-Rays appeared to show, he was not malingering. A Huge Thankyou to them for going that extra mile for him.

We've always known that the Royal Berkshire hospital has scattered pockets of excellence, and it seems we've discovered another pocket.

Sunshine Desserts!

Just got back, today, from a short break in Gran Canaria. The early sunshine and the gourmet food was just what the doctor ordered.
Roger has kept fine after his recent scare, and we both feel alot more relaxed.
All in all everything went well.

Bad Dream or Nightmare!

In the early hours of Friday 13th. Roger started whimpering in his sleep. It sounded distressing. My first thought was he was having a bad dream, so I decided to wake him. I stroked his hand and told him that it was only a dream. About ten seconds later it all kicked off. He didn't appear to be listening to me, so I turned on the light, and then the dreadful noise started. I don't know how he was making the noise he was making. It was very loud breathing, but like a tractor engine ticking over. His teeth were clenched, he'd bitten his tongue and he was foaming at the mouth. His eyes were rolling in his head, his back was arched and his arms were rigid. He was shaking violently and I thought he was having a stroke. Quite honestly I thought he'd be dead before the ambulance arrived.

The Ambulance crew got here in less than 5 minutes from me making the call. They took one look at Roger and said "He's having a seizure!" I said "What's a seizure? Is it the same as a stroke?" They explained that it isn't. It is a fit, and they swiftly got him on oxygen. By the time he was in the ambulance, he was making eye contact, and responding with nods of the head. The shaking and the noise had stopped. However, he doesn't remember anything at all until he reached A & E, wondering what he was doing in there again.

Roger has never before ever had a seizure, neither have I ever witnessed one happening. I have never been so scared in my life!

All relevant tests were carried out, and no possible reason or cause could be found. They told us that all tests were normal and he may never have another seizure again, but warned him that if he did not completely take it easy and rest, the chances of him having another in the next two or three days are quite high. He will have to see a neurologist for some brain function tests, but in the meantime he is at home, and is completely 'wiped out.'