No News - Good News

It's been a while since the last entry - generally that's good news!

I saw the brain man and there was nothing to indicate why I had the fits, except that he told me that the brainwaves passing through the left temporal lobe are slow. He doesn't want to see me again, and I'm to continue with the 'Tegratel' probably for life.

I'm due a CT scan tomorrow (Tues 17th) to check the cancer is still at bay.

So, all remaining the same I will be out this Christmas - a bit different to last year!

I hope you all have a lovely Christmas and a healthy New Year.

Two down, one to go.

After a quiet period I've been to two out patient appointments this week (one more at the end of the month - the brain man) The first, on Monday was with St Mark's Hospital, Harrow - all's well and they will see me once more, in 6 months, and if all is still well they will sign me off. 

The second, with the cancer man at the Berks, was also OK, he will send me for a CT scan in December just to be sure, and if that's clear he'll see me in 9 months.

We enjoyed Malta (4-18 Sept) but it was odd. they drive on the left, in right hand drive cars, everyone speaks English, and there are loads of Arriva bendi-buses - to everywhere - every few minutes - it just didn't feel like being abroad, a bit like Cyprus - UK with 30 degrees! Still it was a good rest, lovely roof-top pool and a beach 10min away.

I'm coping well without driving, the only difficult bit is carrying things but there's lots of help - if you ask!  I'm a 1/3 of the way through now (no reduction for doing a course!!!) I get a great deal of use from my bus pass and my 'Disabled RailCard' - which gives us both, me and my 'carer', 1/3 off.'

On the up

Today is an anniversary, significant for some people but probably not for others - it's 4 years since I last had a drink! (alcoholic that is!).

I note that my health problems started from that date, not month or week but day! That bank holiday weekend I caught a really bad urine infection - could that make me a stand-in for HRH? - following a routine cystoscopy on the Friday.

We were in Stamford, looking at possible locations post retirement and made a rush for home in some discomfort, preferring to be treated in Reading. Since then it's all gone wrong! but then as a blogger of considerable stamina, you'd know that!

Since the last blog things have improved, with support from the Stoma Nurses, such that we have booked 2 weeks in Malta. We've not been there before but hear good things about it.

I'm coping with not driving much better than I expected. I have my disabled rail card and been to Oxford for an EEG, an interesting experience - 24 probes stuck to my head and an hours trace - awake, resting and with a strobe light pulsing at various speeds. The Technician didn't say anything, they never do, but the vibes were that nothing showed up.

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.'

A Messy Tale

Well the swelling's dispersed - a messy tale! which I won't detail here! and we hope Doc's right and that it was indeed only an infection - the other options are worse!

The chest infection is improving, but not gone yet - week 4 - it was the worst cold I've had in years, it even stopped me going to Yoga this week! - or was it 'man flu'?

Out Patients at St Marks on Monday - may check the swelling out with them too, then off to Ben's in Leeds on Wednesday - if there's any fuel!

At least the garden's coming on!

Would you Adam and Eve it!

I was getting on fine when, almost imperceptibly, a hernia appeared - the 'inguinal' type no less. Like I haven't had my fill of operations! It became more noticeable when I picked up a nasty cold which settled on my chest - Oh! the coughing!!

Doc put me on antibiotics - again! - and got me an appt for the hernia - 10th May, not bad for a non urgent treatment. However I woke this morning with yet another painful swelling in the scrotum - sound familiar? come home, get a bit better, book a break (5 days Gran Canaria, end of April), get swelling!

The surgery are brilliant, I just popped in at lunchtime to see if I could be seen and they said "Yes 6:40 tonight", how good is that? Doc says it's just an infection and switched my antibiotics to one that will handle both the chest infection and swelling.

The garden's finished, well the hard landscaping, we can now start the planting. Though I can only watch at the moment!

6 Weeks On ...

Well, 6 weeks post op and feeling well. I got back to Yoga this week - thank goodness - I really missed it!

Having got the flat straight we've made a start on the garden - the guys have leveled it and laid 5 ton of scalpings, the slabs arrive tomorrow, so it won't be long. Then, we get involved - the planting, then the sitting, reading and dozing begins!

So Far - So Good

Two and a half weeks post op and doing well, I'm driving again and eating well, so we may well be out of the woods. I start Yoga again on 13th March - 2 weeks and the bike beckons!

Just been to see the Urology Consultant this morning for the half-yearly cancer check - all is well!

A Week and Counting!

I've been home a week, I'm feeling good, I'm eating well, I'm on minimum pain relief, and the new colostomy, which is now for life, is working as it should be. I'm putting on weight, (I dropped to 9st at one point), and I have lost the resemblance to Dobby the house elf, but in spite of all these things we are both finding it difficult to relax for fear of it all going pearshaped again! I guess that will come in the fullness of time.

This lunch-time (Sat), we went out for our first meal for over 6 months. Had a lovely lunch in Nino's in Market Square. It's so nice to be able to walk there and back, even though it started to rain on our return. Who Cares!

The next milestone will be driving - next week all being well, then the big one! back on the bike, but that won't be for a while yet. I bought a new saddle at the beginning of August, but haven't been able to use it yet. The footpath going past us goes up river (West) to Goring and beyond, Round and down the Kennet & Avon canal (South West) to Newbury or down stream (East) through Sonning to Henley - and not a hill in sight!

Ensconced in our Flat Once More.

Despite the snowfall on Thursday night (bit worried when I looked out of the window at 1.20am to see the lawn & surrounding trees outside covered in white stuff) fortunately it didn't amount to much, and we made it home mid afternoon on Friday to our little flat. It is so good to be home, especially as Roger is doing very well. I have been "cooking up a storm" ever since, and he's been tucking in to three course meals.

Remember that scene in "Back to the Future" when his picture is fading to a negative? Well! It's kind of the opposite for Roger. You can virtually see him returning from the negative to his usual self, and it's not just the look of him either, but also his voice has gathered strength. The 'little 'ol man' voice that has been present so often of late, has disappeared completely.

We are daring to think about holidays. Only thinking at this stage, but we haven't dared to do that for a long long time!

District nurse came this morning to change the dressing and sutures are coming out on Wed. or Thurs.

Meanwhile Roger is enjoying peaceful nights away from the constant bleeping sounds of nights on the ward.

Coming Home

Roger is doing so well after his op. that his consultant has told him he can go home tomorrow (Friday), so I have extended my stay for one more night, and we will come home together.

These plans hold, as long as nothing's changed drastically by the time I get over to the ward at 11.00am. It's now 9.15am.

Last night, as he was fed up at looking at the opposite wall of his ward, I took him on a date. Just down the corridor to the Costa coffee bar, where we sat and chatted and drank hot chocolate for an hour or so, and then we made our way back to the ward.

We are so impressed with St. Mark's Hospital. The staff are wonderfully caring, and the medical and surgical expertise is second to none. What would have become of Roger had it not been for these guys??

Now we hope that we can have our lives back once more.

A Lovely Surprise!

A lovely surprise! Roger rang me about 30mins. ago, and he sounded so well. It was so good to hear his voice. This is what he told me: The operation took 3 hrs. and there were three surgeons attending. They were pleased to find that there was not as much damaged bowel as they thought they would encounter, and it was all straight forward and went well.

Back on the ward, yesterday, he was in a bit of pain for a while when his epidural line became dislodged, but he said it was soon remedied, and the nursing staff were and are very attentive.

The Physios are keeping him on the move. Today the surgical team came to review him (wardrounds everyday at St. Mark's even at weekends) and were pleased with his progress thus far. They told him he could eat and drink a little of what he fancied.

Tomorrow he will have his epidural line removed (don't know why, but they never keep them in very long) so he might slip back slightly for a short while, but is prepared for it.

It is not snowing there at the moment, but I wouldn't mind betting he'll wake up to snow in the morning. He promises to ring again tomorrow, and Monday onwards I will be staying over at Harrow.

All in all just what we wanted to hear.

The Longest Day

I gather that Roger was taken down for surgery at 9.30am. I rang the ward at 3.30pm and he was not back. I rang again at 4.30pm and he was still in recovery. I rang about 5.30pm and was told that the sister had just been asked to go down and collect him from Recovery. Then they stopped answering the phone, so I was unable to get through at all. Finally got through to the ward again at about 6.30pm. I was told that Roger was back on the ward and he has an epidural to help him manage the pain. The guy couldn't tell me very much, as the ward sister knew more, but she was on her break, so I'm going to ring back before her shift ends, to try and glean some more information about how the op went.

If I manage to do that, I will update & edit this particular blog (I won't start a new one) so keep checking. Can't promise, but I'll do my very best.

7.40pm. UPDATE: Just managed to have a few words with Sister, who collected Roger from recovery. There were no particular problems, hence he came straight back to the ward. He was a little cold, but is warmed up now. She said he would be ringing me as soon as he feels up to it, and in the meantime she will tell him that I rang and that everyone is thinking about him.

You Couldn't Make This Up!

Rob and I decided to take a trip to Harrow this morning to see how Roger was doing. We got to the ward only to find the corridor barred by no admittance screens. Peering around the screens we were met by a senior nurse, who asked who we were visiting. I said it was my husband and he told us that the Norovirus (the winter sickness & diarrhoea bug) had struck the ward. He said that only one of us could go in to see Roger. Not even, one at a time, and obviously the baby was barred.

I agreed to meet up with Rob and Connor later, and they went down to Costa Coffee Shop in the hospital foyer. Meanwhile I had to don gloves and plastic apron and walk to the other end of the corridor to Roger's room. The usually bustling corridor was deserted, resembling the Marie Celeste. When I got to Roger's room, I received instructions of what to do on leaving the room. I was to ditch the gloves & apron wash my hands thoroughly with this special soap and then use the medicated gel provided. On entering I found three cleaners washing floors.

Roger wasn't too brilliant. He was feeling sick and had been sick twice. His neighbours were all in the same state. Roger said he'd telephoned me to tell me not to visit, but I must've missed the call by minutes.
Just as well I'm not staying over at the hospital at the moment, or I would be stuck at the other end of the 'campus' in a single room, and not even being allowed to visit him.

Yet another spanner in the works!

Very Slight Change of Plan

There has been a very slight change of plan in that originally St. Mark's was going to liaise with the Royal Berks with a view to them providing intravenous 'top up' hydration for Roger, until he is readmitted for his op on the 2nd Feb. Now, the plan is to keep him in St. Mark's right up until his operation.

Neither of us mind this option. In fact we prefer it in terms of Roger's safety and well being. OK! It's boring for him, but he can live with that.

He is having some eating difficulties at the moment, which is a worry, in that he must at least maintain his weight and hopefully gain some before they will operate. He's back on anti emetics for his nausea.

Just when you think you've cracked it, there's yet another spanner in the works!

Watch This Space!

The Decision Has Been Made.

The surgeons have come to a decision based on their exploratory procedure on Wednesday. Sorry to say that Roger's bowel was too damaged to facilitate restoring it to the condition it was pre 2009, so now plan B is to form a colostomy like the one he had prior to the attempted reversal in August last year. He will keep this for life.

The good news for us is that they have given him a date to come back into St. Mark's Hospital to have the operation. He will go back in on the 31st. January and have the op on Thursday 2nd. Feb. after which, hopefully he will be able to get on with the rest of his life!

In the meantime they hope to liaise with the Royal Berkshire Hospital and get them to agree for Roger to go in to them periodically between now and the end of the month, (as a day patient) to be rehydrated intravenously whilst waiting. The surgeon at St Mark's realises the importance of keeping Roger rehydrated intravenously. One can only wonder why the surgeon at the Royal Berks discharged him home on three separate occasions with no such plan in place, resulting in dire consequences each time. He is still suffering the effects of dysphasia from the last time.

They're Going In!

Roger has been moved out of his side room and into a six bedded room, so no more "Billy no mates." The man in the next bed traveled from Suffolk (a three hour journey) he was discharged today, and told Roger that he was in a bit of a state when he came in, but "This place sorted me out," so that is comforting to know!

Roger's consultant saw him today. She wants to do an exploratory tomorrow. Without going into too much detail it involves two cameras and some dye.

They have all the tests from the 'Berks' and their radiologists are interpreting them. Based on all the results gathered, they will hold a case conference on Friday to decide if they are able to restore Roger's bowel to it's pre 2009 former glory. If they can't, then it's plan B (a colostomy for life) Miss Clark told him that whatever happens he cannot stay with the high output Ileostomy that he currently has. She also told him that no matter how much water he drinks, he will never, ever quench his thirst with the high output stoma he has. The only way he can quench his thirst is with intravenous fluids.

Bed with Roger's name on it!

Roger rang me suddenly yesterday (Fri) to say St. Mark's had a bed free and it had his name on it, so he left at lunchtime by hospital transport. I threw a few things into a suitcase and followed on. We more or less arrived at the same time. Roger has settled in nicely and I am in something like student accommodation. Single room with ensuite showeroom & loo and shared kitchen down the corridor.

The hospital staff here are as keen as mustard, though they seem to have Vicky Pollard on the switchboard! Still, she can't kill anyone. Though she may well make their ears bleed!!

Roger is being assessed currently, so we wait for a plan. I am writing this on a 'pay as you go' dongle, so it's a bit like doing it on a wing and a prayer. Hope it gets through!

St. Mark's Beckons!

After an unending succession of bank holidays and consequently nothing happening on the hospital front, at last a breakthrough. A surgeon at St. Mark's Hospital, Harrow has agreed to take over Roger's care. I have in front of me, the letter confirming it.

Now we wait for a bed to become available, and Roger will go by ambulance directly from the RBH to ST. Mark's Hospital, where he will have various consultations to decide on the best surgical option for him.

I will be staying up there with him, as I want to be in on all consultations and close by during the surgery. NB. May not be able to blog during this period.

Hoping it will be sooner rather than later. We want to get it over and done with now. Roger has put on a few pounds. He is now 9 stone 11lbs. He has a bizarre diet of rubbish to eat. As long as it's refined, white bread, white sugar, white rice and lots of animal fats and cream he can have it, but if it's healthy wholemeal bread, brown rice and wholemeal pasta he can't. It's only a matter of time before he starts on the "Maccy D's" Still! the weight's going on, and that's the main thing!