When you thought it couldn't get worse ......

The last two mornings have been difficult, and I have not improved much as the day's progressed! The tests yesterday now show that I have pneumonia too!

So if a bed is available, I'm back in again (Wed) - the 5th time I think!! - watch this space - Roger

Roger was not progressing and this was due to a fistula (a what?), which had formed in his body, just in front of the bowel, as far as we can make out.

Anyway! it had a pool of fluid in this area, which was poisoning Roger and thwarting all our efforts to make him healthy again. Roger and I have always known this, but the hospital doctors didn't seem to get excited about it. They kept saying that it will drain in it's own time. Only last Wednesday when we went to see the consultant in out patient follow up clinic,did they suddenly seem to cotton on to the severity of the problem.

The next day, being Christmas eve, our GP diagnosed that Roger had Pneumonia as well. She has been pushing for something to be done about the fluids/fistula situation, and suddenly we got a call from the consultant's secretary saying he wants Roger in the following day for surgery if he's well enough.

Well! we got him in (all weak and wobbly!) and he went straight to theatre. He was back a little over an hour later, looking so much better. He immediately requested a three course lunch and proceeded to devour it. Now! I have been for weeks and weeks trying to get as little as 1 ounce of protein a day down his throat, and failing miserably, (just wouldn't touch it) so to hear him requesting food was music to my ears!

Now I hope he stays in until the new year as there was talk of a blood transfusion to really get his "starter for ten" going. Maybe we can have a re-run of Christmas?

Suzanne

Christmas 2009

Well I didn't think I would be writing this on Christmas Day!!!

I expected to be well on the way to recovery by now, to have met up with most of you and to be able to see the wood for the trees - none are true!

I think we are still in 'round one'! trying to control the pain, getting the pharmaceuticals right so that the other bits begin to fall into place but - no! - not yet - but we are still optimistic and hope we will get there soon.

Anyway!! HAPPY CHRISTMAS and a PEACEFUL NEW YEAR! to all of you.

Your support has [does] made an enormous difference, I know it's sometimes difficult to know what to say but you always hit the nail on the head. I find irreverent comments on the Blog 'Comments' are the best!

Ben, Rob and Suze came round this morning (25th) Suze went on to her's for lunch.

Rob has taken over the kitchen so Suzanne can relax.

Saw the Consultant on Wed (23rd) still all up and down. Seeing him again on 6th January so unlikely to be any news till them.

Love to you all


Roger & Suzanne

Home again - again - again!

Home Again - again - again - can you see a pattern here?

The swab was clear so maybe it was a false alarm, but it got the pain specialist nurse involved and she came up with a new regime of about 5 things which give all day cover without any holes! so with little or no pain I can get on with getting better. Now where's that lawnmower......

Back on the ward.............again!

Sadly, I have to report that Roger is once more in hospital. Whether it is another infection or, as I suspect, the same infection that they haven't quite managed to kill off, and it's put in an appearance in a slightly different area. Anyway! our GP was concerned enough to have him readmitted.

He has a nice little side room all to himself (they told him he'd been upgraded for being a regular customer) his own wash hand basin, so he doesn't have to jostle for a shave in the mornings and he can shut the door and get a decent night's sleep.

He was, as you can immagine, pretty fed up at having to be readmitted, but the pain is such that he is not making much progress at home, though he has gained 6lbs in the eight days he was at home. I like to think that was down to my home cooking.

Visited today and found him looking more relaxed. They have changed to some new pain killers, which are anti inflammatories, also whilst I was there the pain control specialist nurse came and worked out a programme of new medication to help him. She was very "on the ball" so I hope to see a big improvement very soon.

At the moment they are waiting for the results of a swab to come back from microbiology, before they can properly treat the infection.

Needless to say preparations for Christmas aren't happening in our house at the moment. I have a feeling it will be a last minute affair, although Rob managed to get the tree down from the loft this w/e and decorate with lights & baubles, whilst I cooked roast pork followed by apple crumble. Exchange is no robbery!

I will visit Roger daily, of course, and update you with any new developments as and when.

Suzanne

Third Time Lucky!

Home again at 3pm lets hope that's it. They hammered it with big antibiotics - sorry to get technical! and hope it will now all heal OK - so do we.

Ben's coming down for the weekend so that will be good.

Round and round we go!

Roger was admitted to hospital again on Friday, suffering from a pelvic infection.

They are currently growing a "spec" to see what they are dealing with. Hopefully we will get the results this Monday and then they will know with which antibiotic to tackle "the beast."

Visited Roger this afternoon and he was despondent. Never seen him this low.
It's a good job Rob came with me to help keep up morale. Dark days indeed!

What more can I say!

the Dobby Days

Been a few days of consolidation, feeling a little better each day, till today! now have yet another urine infection!! if it's out there I'll catch it!!

Still got Dobby the House Elf looking out at me from the mirror!! god he's ugly!! When he leaves it will be another corner turned.

Friday 13th!

I went up to Victoria Ward about 2.30 am, X-Ray on route and was booked for a scan to check my lungs. I languished there for the whole of Wednesday and eventually got scanned Thursday morning but the results were not available till 4:00 pm FRIDAY - ALL CLEAR!!! both X-Ray and scan - it must have been a rogue clot that cleared itself. We were out of there by 5:00 pm and home, we hope for good - Friday 13th is normally a good day for us.

Stop Press

The homecoming turned out to last approx 30 hours. Roger developed breathing problems last night and it was suspected that he has blood clots on his lungs. He was rushed in by ambulance to A & E and spent from about 10.00 until 2.15 am waiting on a trolley. Eventually seen by a Doctor from the ward (not an A & E doctor) and admitted for tests and yet another scan!!
His condition suddenly improved and the doctor said that sometimes the clots just disperse.
I left knowing he was in good hands.
I came home in the early hours. It was quite misty and just coming in to Sonning Common, out of the mist appeared a magnificent stag with antlers.........amazing what's about at that time in the morning!
Finally got to bed at 2.45am.
He was looking much better when I saw him this afternoon, but the scan won't be until tomorrow.
We wait, and hope, and see what happens!

Suzanne

The Home Coming

I'm home - Monday Evening - Zannie you are a very good writer - thankyou for covering the blog in my absence. You have a hidden talent.
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Well! wow! that was some mangle! I tried to keep a diary of sorts but there was no structure of time, it was more of a continuous spiral, also, most of the time I was in 'cloud cuckoo' land. Although I was in for 3 weeks it felt like 3 days - not quite sure what that implies.

Tuesday 20th Oct - went down for the opp - and have vague memories of surfacing in recovery and being looked after by a nurse who lives in Sonning Common. Back on the ward on Wednesday. Had epidural Morphine - drifting in and out of reality! was at a community meeting in Vamos, chaired (very well I might add) by one of the sisters!!! I also spent time in Chiltern Edge (local school) Youth Wing?!?!

By Thursday 23rd I knew I was in trouble with an infection - my mind was all over the place - why would anyone take something that would create this confusion and anxiety on purpose???

Woke up in recovery - again! and eventually back to the ward - lots of travel!? Oxford on one occasion and Vamos a couple of times. Days blend into days.

Tuesday 26th woke in the early hours with a feeling of utter, utter despair! It was like being the subject of 'The Truman Show' it was all a con, but I knew no one would believe me. It was all going on around me - (normal ward activity). This was the most frightening mental torture I have ever experienced! The confusion slowly lifted as the morning progressed.

On Thursday 29th "the big trip" was back and I was on THE USS ENTERPRISE! not quite as daft as it sounds as all nurses wear different colour uniforms dependant on rank. I regained reality quicker that day though, and managed to shower and shave (alright John---Leave it!!---Suz).

Saturday 7th first day I felt human and Sunday better still! I can go home Monday - HURRAH!!

It's funny, everyone has been absolutely brilliant! Professionalism, care and love given by staff at every level by the spadeful: and yet you can't wait to escape!

I can't even scratch the surface of the admiration I have for the RBH staff, at all levels - they were Saints and Angels and I don't think I'm being over dramatic to say I owe them my life - THANK YOU!

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N.B. Although they said it was me who came home, they lied!! When I look in the mirror it's Dobbie the House Elf!! When he goes I'll be ready to receive visitors - till then, please keep leaving comments. Roger

Cautiously Optimistic!

I hardly dare voice this, lest he starts going backwards again, but I think we've "turned the corner" and that Rog is really on the way to recovery. On Wednesday afternoon he was very much improved, a better colour and moving around much more easily. That night he was sick again, and he told the consultant he couldn't hack it anymore. He sunk right down and hit rock bottom. By the time I heard about this (the following afternoon) he was, however, on the way up again.

All the tubes, and all the stents and drains have been removed now, and he is forcing himself to eat and keep it down, which he managed to do last night, and slept longer than normal. I've been taking him in some good bacteria in the form of Actimel for the last couple of days. It can only be good for him.
Anyway! The oedema has gone (I like to think my massages were something to do with that) and the bowel has started working again.

Today, Friday he was having a good afternoon and they had dressed him in pyjamas instead of the usual hospital gown, so he looked the business!

Chatting with Mr. Shah today, he told us that he'd removed all the lymph nodes (30) in R's stomach as a precaution. He told me that he thought Roger was "a lovely man," so say all of us!

Oh! and the other big thing is his temperature is down and seems to be staying down, which means they've defeated the dreaded infection. Of course he now needs fattening up, as his bones are poking through what little flesh is left, but lots of TLC will soon put that right. He still needs to get rid of those hiccups though!

I took him in a photo of the first snows of the Winter on the mountains in Crete (happened on Monday) so he can focus on that.

All in all I'm feeling rather happy tonight.
Please, please let it last!!!

Suzanne

Two Weeks Tomorrow

Two weeks tomorrow since Roger had his first operation. His body has suffered such an assault that it just seized up and refused to work. Whatever he tried to eat (and he really hasn't got any appetite) he threw up. His bowel stopped processing anything and his legs and feet swelled up to an enormous size.

I have been giving him foot and leg massages most days in a bid to get rid of the oedema, which seems to be improving slowly, plus he enjoys it.

The consultant was concerned about Roger's protein levels, because he was just too feeble to eat enough to make a difference, so it was decided to insert a tube and drip feed him bottles of nutrients. This started on Saturday 31st. and was a good move, as he started to pick up a bit and slept that night from 9.00pm until 7.00am, which I have to say is more than I am managing at the moment!

By Sunday he'd managed two bottles of liquid food, and felt better, although he is still having hallucinations and they think it might be the drug they are giving him to try and cure the hiccups, so are looking into changing it for something else (doesn't work anyway!) he's still hiccupping for England! His bowel has sprung into action again, or maybe not exactly sprung, more of a saunter really.

Today I went in to see him and really expected him to have "turned the corner" and he did seem a little brighter, it's true, but he said that there was some concern over the actual wound. Whilst I was still with him a doctor came and looked and confirmed that he had an infection in the wound, which, low and behold is Pseudomonas Aeruginosa. This is what he caught last year when he went in to have a flexible cystoscopy (just an out patient's checkup and he came away with it) and ended up going into hospital 2 days later by ambulance, as an emergency.

I'm not quite sure what they plan to do about it, as I left before the consultant had done his evening ward round.

I am very frightened!!! See what tomorrow brings!

Suzanne

Exactly One Week!

It is exactly one week today since Roger's original operation, and 4 days since the emergency operation took place. Two general anaesthetics in 3 days plus the epidural pain relief had taken it's toll. It seemed to cause what I would call "mental fidgeting." With wires and tubes connected to him everywhere when I went to visit, he had me lining them up so they all ran parallel and nothing was kinked or twisted. Even though they all worked perfectly well as they were, he kept saying "I like to be tidy!" I was quite exhausted by the time I left!
Next came the "push button" Morphine machine,operated by the patient only. This has been sending him on "magic carpet rides" all over the place. Several visits to Crete,one to attend a meeting which the staff nurse was chairing,also a couple of visits to Chiltern Edge School for some strange reason. Our sons went there, but that was years ago! Roger said " It's been interesting, but I'll be glad to get off this machine!"
Sunday 25th. Roger said he wanted to get the "telly" going, which we did. This was a positive, as he just hasn't been remotely interested before.
Monday it was decided to try him on solid foods for the first time. This was another sign of improvement,as up until then his diet consisted of soups,yoghurts,icecream and some kind of food supplement drink.
Although his hands and forearms now look like pin cushions, alot of the tubes around his face have been removed, which means he can get a decent shave.
I went to see him this afternoon. I was full of optimism, as to date he's been so positive. However,It was soon clear that he wasn't having a good day. The solid food thing wasn't a success at all, so this had been stopped. He felt sick. They had given him a couple of drugs to try and cure it, but they didn't seem to be working. He's very sore, which must make him miserable,and also he's had hiccups since 10.00am yesterday(over 24hrs.)and of course,he can't sleep because of the hiccups and also it hurts him to hiccup. They've tried everything, but can't stop them. All in all he's not in a happy place just now.
Hope the next blog will be more positive.
Suzanne

Three Days in!

Well! it was my intention to update the blog today. To bring you all up to speed etc. I was going to tell you that Rog was doing very well, considering! That he is not being given blood transfusions anymore and that he is not being given oxygen anymore, and the big step of removing the epidural pain relief was done last night, and that things were progressing nicely.

Can you feel a BUT! coming on? Unfortunately, at 6.15am I got the dreaded phone call from the Royal Berks Hospital to say that Roger was in considerable pain, had been x-rayed, they didn't know what was the matter yet, but the doctors had been called in, the decision to operate was taken. Please could I make my way in at once!!

As a scary moment it was right up there with originally hearing that he had bladder cancer in Jan.2003 and certainly up there with the "3 agressive tumours" announcement in mid Sept.2009.

Rob and I were in the ward before 7.00am. Roger had gone to theatre at 6.30am.
Nurses were lovely as usual and offered us toast & tea. The tea we accepted. Our appetites had escaped us.
We sat in that awful day room for what seemed like an eternity, but was about 3 hours.

Eventually Mr. Shah, the consultant appeared and said "Let's go to another room!" I could not move. I was rooted to the spot. I grabbed the surgeon's arm and searched his face for clues. I did not move until I heard him utter the magic words "He's going to be alright!"

Mr. Shah took us into sister's office, sat us down & explained what had happened. Apparently, with this type of operation, there is a 1 in 200 chance of a hole appearing in the bowel. A tiny hole had appeared in Roger's bowel, and his system was being infected by leakage. It was tiny and didn't show on the x-ray, but the registrar noticed that the urine was dark and suspected what was going on and acted quickly. Mr. Shah said that if it had gone on for a couple of days before being discovered, then it would've been very serious indeed! Let's hear it for the registrar!!

OK! what they've done; They have washed the whole system through, and plumbed him up for a colostomy bag.

My darling husband seems to have got into the habit of collecting bags, and he's always telling me off for doing that!

Anyway! this time it won't be a bag for life, but just for 6 weeks, until the section of injured bowel repairs itself. They will then do a reversal.

He's in recovery as I write this and he won't be back on the ward just yet. This has put him back about 7 days, and obviously you won't be able to visit him yet a while, but I know you will understand.

Trust Rog! 1 in 200 and it had to be him! Apart from that the morning went quite well!

Surgery Day!

Roger has had "The Big Op". All went well and nothing else untoward was found in the process.

Surgery started at just after midday and yours truly was ringing the ward every couple of hours for an update. I finally decided to make my way in to visit him, reaching the ward at 5.15. No sign of Roger or his bed. The only sign that he had been there was his rolled up dressing gown on the bedside chair.

Sister informed me that he hadn't come back from theatre. She rang down, to be told they were still operating. She told me he'd be in the recovery room for a "long time" but to ring later on.

I met up with Rob & Suze in the foyer and related the tale to them. We decided to call it a day, and go back to our place for a curry.

On the way home, the surgeon rang me on my mobile. Impressive or what? We are talking NHS here!! He told me that it went well and they were very happy with the result. That Roger would be in recovery for the rest of the night, but back in the ward tomorrow and would most probably sleep for the whole of tomorrow. He and I both!

I am now going to bed, tired but relieved!!

Suzanne

Back from Vamos!

Got back from Crete on Tuesday 13th Oct.

Had a GREAT time, the weather was amazing for October 26-28 degrees, the sea warm and food great, as ever! Ben, Rob and Suze joined us for the second week and it was good to spend some quality time!! with them.

We found a book of walks around the Vamos village and as long as we went early, before the heat of the day it was fine. Vamos got the thumbs up from the folks which was encouraging as they may come out to see us more!!

All we did was eat, sleep and swim, with a little walking!

We got the final plans for the house on the last day - but only with Hilary's stirling efforts! They are now before the Crete planning department!!! guess who invented bureaucracy?!! If you'd like a look it's at Goggle Earth 35' 24' 24' 71 N, 24' 12' 17' 89' E and http://www.vamossa.gr/en/home has some more good stuff about the area. http://www.thecic.eu/ is an interesting local mag.

Bit of a hiatus now till I go in on Monday evening ready for the opp on Tuesday.

Please keep leaving you comments!

Retirement

Well, the day has arrived, retirement - my very last day of full-time work - 26th September 2009.

I started work on the first Monday in September, the 5th I think, 1963 - 46 years ago as an apprentice electrician at the London Electricity Board! My last act at work is nicely circular! fitting a thermostat to the heater in the office WC.

The start of my retirement is not quite what I had planned - but that's life!

A week and a bit in from the news and we are beginning to come to terms with what it will mean - we saw the Stoma Nurse yesterday and whilst she allayed some of our fears and uncertainties, the reality of a bag - for life!! bugger Waitrose!! is no more appealing!

Intellectually I know 1000's of people lead perfectly normal lives with this inconvenience but emotionally I have some way to go to accept it - I'm expecting a call any minute to say my notes were mixed up and I'm OK! Got the CT scan on Monday and then we are all set for the 20th Oct.

Tuesday we're off to Crete - burglars reading this please note - take the TV and all the attendant gubbins in the cabinet in the living room PLEASE!

It should be warm in Vamos, about 26, though it's always warmer there than the same number here? If you'd like a look at where we are click - http://www.crete-escapes.com/crete-villas-vamos-oleander.htm.

Will try to do an entry from Vamos if the magic broardband mobile dongle works there.

The story so far

I've had bladder cancer since 2003 and had regular checks by flexible cyscoscopy. Sometimes they've had to zap the odd patch and once, early on, I had some chemotherapy, but I've got away with it so far.

In July 09 I had a routine check and it looked as though it might have migrated from the bladder into the urethra. They had me back in a few weeks later for biopsies and then x-rays. We met with the Consultant on 16th September. He didn't mince his words, the tumour was in 3 sites and it had become aggressive - I asked if it had been drinking? (not really! Zannie would have killed me there and then!) in short we only had one option - removal of the bladder, urethra and prostate - and soon!

I haggled for a stay of execution so we could go to Crete as planned on the 29th September, but instead of till April which, until then, was the plan, till the 13th October - he agreed and set the operation for a week later - 20th October 2009.

So we're off on the 29th, Ben and Rob & Suz are coming out from 6th - 13th so we can have a real family holiday first.

Watch this space!