Driving Home For Christmas

Yes!........Roger has been given permission to spend some of Christmas day and Boxing day at home. He has to go back to the hospital to sleep, but hey!.....It's better than nothing!
Rob will go and get him at 10.30am. Everything's organised for Christmas lunch, and I'm so excited!

I would like to take this opportunity to thank from the bottom of my heart, everybody who has supported us in their thoughts, hopes and prayers. We know you are there for us and it really helps. Thankyou so much!

At the risk of sounding like the Queen....HAPPY CHRISTMAS TO YOU ALL!

Speaking in Tongues!

Our GP made a house call on Roger on Monday, to review the situation, as it was clear Roger was not thriving, and he has lost 6lbs of the weight he put on lately. GP faxed through to the surgeon's secretary to ask for an emergency outpatient appointment, and this was fixed for the next day at 10.35am. Unfortunately Roger wasn't feeling at all well the night before, so went to bed early, feeling sick. He started to retch in spite of being given an anti sickness tablet. We both had a dreadful night. Roger didn't dare drink anything for fear of being sick. He was vomiting again in the early morning and, as a result of this and not drinking, became severely dehydrated.

An ambulance, arranged by the surgery, whisked us into A & E. where once more the nightmare of finding a vein to cannulate began. Eventually after much unsuccessful prodding, probing and needle sticking, an anaesthetist was called down from theatre, and managed to cannulate in his foot. Desperate measures!

This procedure took so long that he deteriorated further and lost the power of speaking English. It is called dysphasia, and can apparently affect stroke patients and patients with a major infection going on. Basically it's damage to the left side of the brain that is concerned with language and communication. He had it once before on the ward, but he had a cannula already in then, so they could instantly give him intravenous antibiotics, and within the hour he was speaking English and making sense. This time because they hadn't managed to find a suitable vein the time lapse was greater. Therefore, so was the damage! It was very distressing both for him, and for me to witness.

He certainly had his 15 minutes of fame in that he was rushed through from A & E to Rescussitation and surrounded by senior doctors both surgical and medical. A doctor from ICU came to check him over, and take arterial bloods, which he managed to do gently and expertly. By this time they had both antibiotics and (I believe) plasma dripping into Roger, and he was improving in colour, and also became calmer. Then he was taken to XRay (chest) and then back into the 'hellhole' they call A & E.

We originally arrived there just after 9.00am and by now it was 6.00pm. There wasn't a suitable, available bed in the whole hospital (they said he must have a high dependency bed with constant monitering) so he had to wait. I asked the sister "How long will it be?" She told me that the guy before Roger in the same bay, had just spent all night there waiting for a bed in ICU and he'd just got one. I sincerely hope he was still alive to reap the benefit!

I had to get home, and so it was with very heavy heart that I left Roger at 6.15pm, still unable to voice his needs. Rang the hospital just before 9.30pm and Roger was still in A & E. Went to bed exhausted at 9.30pm and slept until 2.30am. Awoke thinking of Roger and knew I wouldn't get back to sleep before ringing the hospital. Eventually tracked him down to Lister Ward, which made me very happy, because he's been there before, so they know he is compos mentis and will quickly realise that it's due to dysphasia and not dementia, if he starts talking nonsense. Secondly I know they are attentive on that ward, so his needs will be met.

With this knowledge, I fell back to sleep instantly and didn't wake until 6.30am. By 8.00am I was in Waitrose doing a Christmas veg & grocery shop. Figured it best to keep occupied!

Got back: The phone rang, and it was Roger saying in plain English "Hello! It's me! I'm on Lister Ward! and I'm feeling a whole lot better!" He sounded great! He said "It's funny, but I can't get my head around one or two words!" He remembered nothing of the previous day.

I looked up dysphasia on the net and it stated that speech can recover to a greater or lesser extent with time, and the odd one or two words we can soon work on. He was more or less back to normal.

It is obvious to anybody that anything Roger eats or drinks leaves his ileostomy before any absorbtion takes place. Hence, he will never be able to get back to be fit for more surgery, by this route.

I told them in A & E that I cannot live through this again, and I'm not willing to put him through it either, therefore I insisted that Roger be fitted with a 'picc line' (a cannula that stays for weeks, possibly longer, wired in under a local anaesthetic) he can have both fluids and nutrients fed into it without going through the stomach. He can, of course eat and drink as well.

They said it was possible, and I must push for it, so I spoke this morning to sister on the ward. I told her that 1.) I am not willing to have Roger home unless he is fitted with one, and 2) I believe it is crucial to Roger's survival. She said she would convey that to the surgeon on my behalf.

I went in to see Roger this afternoon and, as we talked, a porter arrived and announced he had come to take Roger to have a picc line inserted. Hooray! This way lies success!!

Three Bags Full!

We continue to treat the abscess with antibiotics, and eat well, weight has increased by 8lbs but on Wednesday evening it all went wrong. The abscess broke the surface like a blister and it went everywhere! We replaced stoma bag after stoma bag, but could not get one to stay adhered to the skin for more than 5 minutes at a time.

We tried to catch a Stoma Nurse at 5:30pm by phoning the hospital, but they'd gone for the day. We struggled on through the night and then had the idea that in the past the West-Call Doctors (overnight service) gave me a jab to stop me vomiting maybe there was a similar jab to disable the bowel overnight so we could get some sleep and regroup the next day. No! there wasn't but he offered for the 'out-of-hours' Nurses to call. He said "They may be able to help with dressings or other stuff to get us through the night, or I could organise another admission." No! No! No!

(for those of you counting - that is very sad! - I've had a total of 11 admissions, 5 since August '11)

The Nurses arrived about 2am like 'Cagney and Lacy' and were very supportive but had pitifully little equipment, anyway, we had worked out by then what the problem was. Where the abscess had broken the surface it was underneath the flange of the stoma which breached the seal - hence all the blowouts. We cut a scallop in the side of the flange and the Nurses fitted it with an absorbent dressing.

By morning it was a mess again. It seemed that overnight the abscess had sprung a leak somewhere else, in a more helpful place away from the other bags so we could now get a good seal on both - Hurrah!

We waited for the District Nurse, Sally, who had the brainwave of trimming a bag and fitting it over the new abscess outlet, and it seems to be working - except I now have 3 bags!

After lunch our GP's locum popped in and got some bloods from my foot - not best place! but desperate times require desperate measures! She also added 'Metronidazole' to the other antibiotic I'm on. - let's hope we have a quieter night tonight. We are both exhausted!

Home Is Where The Heart is!

I stayed in hospital until Sunday (11th) CDU then 'Kennet' ward again. I had a painful swelling beside the stoma - infection! A very good Registrar, Simon managed to get a cannula in my hand, no mean feat! he put me on Anti-biotics intravenously, which are always better than oral anyway, and with my poor absorption, the best way.

I just 'cap napped' last night (Sunday), as the bag only goes 2 hours before it needs emptying - miss it by oversleeping and boy! will you regret it! - everywhere! I'm still staggered how quickly 2 nurses, or care assistants even, can strip, clean and remake a bed - with you in it! - you could hold your breath that long! and all the time they're smiling! It's the old tablecloth trick!!

(home now) Last night (Monday) I had a bad night - the bag leaked at 3am, cleaned up (half-an-hour!) and it did it again at 7am, no real idea why but added a 'horseshoe sticker' to the place where it went both times and it held.By good coincidence we were seeing the Stoma Nurse at 9.00am this morning, Rob and Connor took us in to the Royal Berks hospital. It was a very useful session, and we managed to 'bag' some useful spares for emergency survival kit.She gave me lots of encouragement, so I came home feeling more settled.Somehow amongst all this chaos Suzanne managed to get the tree AND put it up, decorate the conservatory, come and get me from hospital, cook a dinner and a million other things - she's amazing!

First the Good News...........

Roger has been doing so well lately, especially after giving him vast amounts of salt in his diet (on the advice of the consultant urologist) resulting in the disappearance of his breathlessness and nausea. The way the Ileostomy is constructed, there is virtually no uptake or absorbtion, rendering it virtually impossible to poison him with too much salt, as most leaves the system before absorbtion takes place. His stamina is such that he can now stand up to shave, a task which was hitherto impossible without collaspsing onto the loo seat and gasping for breath. That's the good news!

Unfortunately he awoke on Friday morning with a painful swelling around the stoma. The district nurse took a look and called the GP in. The GP took a look and said it was an infection (collection of pus) which will probably have to be lanced. The surgical team was consulted and the outcome was yet another admission to the Royal Berks Hospital. I will be going in to see him later on today to find out what has been done.

Those of you who know Roger well, will realise that he 'proudly' exists without a mobile phone, so I cannot contact him in between visits, which is a shame.

Trying to erect the Christmas tree for him to see when he gets home. If only I could find the Bl...y lights to go on it !!! The search goes on!

Third Day Lucky!

Since it was discovered that Roger was very low in salt, he's been having extra salt in his food. The result is that the retching has ceased and he hasn't felt the slightest bit sick in the last three days. He is also steady on his feet now, which means I no longer have to get up in the night with him, for fear of him falling when he goes to the bathroom.

The other good news is that he's gained 4 lbs in weight, which is the icing on the cake.

I hope I'm not living in a fool's paradise when I say I think we may have turned the corner now.

Like getting Blood Out of a Stone.

Roger has been feeling queasy for days. Nobody knows why. GP thought to repeat the blood test for potassium levels, which were high last time he was in hospital. The new results were raised it's true, but only slightly and not enough to cause concern. We were hoping this was the culprit, at least we'd know why he's feeling groggy. It showed sodium level to be low, so I'm putting salt on the food he will eat. Low sodium would account for him feeling woozy.

In spite of anti emetics he goes to bed feeling sick and wakes in the morning feeling sick......it's no way to live!

The phlebotomist has earned her money this week, getting blood out of Roger. She is very experienced in such matters, but she said he was the worst person for getting blood she'd come across in her whole career. He is now two and a half stones lighter and actually weighs less than me now. The quest for feeding goes on!

Mr. F's Clinic

Roger had an O.P appointment for Mr. F's clinic yesterday. He wasn't very well, although he has not vomited or had stomach pains for ages. Anyway, they discovered there was pus coming out of the new stoma, no wonder there is a tender area surrounding it. They took a swab and we are waiting for the culture results to come through, then hopefully the GP will put him on the correct antibiotic to kill that one off. Just checked and the results aren't in yet.

He doesn't have alot in reserve these days, so when he starts to go down hill it happens quickly.

I await a phone call from the GP.

We Think We Have a Breakthrough.

I was telling one of my oldest friends with whom I email most days, about Roger's symptoms. She said "It sounds like a stomach ulcer to me! I have a duodenal ulcer, so I speak from experience."

I started researching on the net and to my amazement I noted the presenting symptoms: 1.) Anaemic like symptoms (the district nurse, our GP and the out of hours emergency doctor all thought Roger had anaemia) 2.) Fatigue 3.) Weight Loss 4.) Vomiting 5.) Loss of Appetite Then I read that because the duodenum connects to the small bowel if there's an ulcer it may cause blockages from time to time. That was the hospital diagnosis this time........a blockage that eventually had cleared itself, and Roger's stoma is in the small intestine. I thought BINGO!

Roger was sick so much that he was on tablets to protect his stomach when he was admitted this time. They asked me about this, on the ward, and I told them that we'd been told when he was last discharged, that he must take them every day for at least 2 weeks. They took the medication from me, locked it up and told me he would be given it every day. He was never given it! Nobody has even mentioned stomach ulcers, and he was told to eat what he liked and, In a bid to fatten him up, let's say I have been generous with the fats.

Roger came home once again on Friday. I've told him of my findings and between us we have devised a strict diet, little and often, no fats or oils, no spicy food and nothing acidic. No alcohol, but he gave that up over three years ago anyway, and no drugs that could irritate the stomach.

We believe as a result, we spent a lovely night last night. Very peaceful, very relaxed, no vomiting, no pain. Today we've had a good day so far, and it's 5.00pm now.
We are cautiously excited and optimistic that he's truly on the way up now. Hallelujah!!!

Out & In

Roger spent the last few days feeling less than alright at best. He feels sick alot, but the main worry is if he takes even 3 or 4 steps he's gasping for breath. The district nurse, the out of hours emergency doctor and his GP all think it is due to anaemia, and it was thought he may need a blood tranfusion. We were awaiting results of blood tests when last Monday evening he actually started vomiting (he's on anti sickness drugs as well) and that was so scary for both of us. Immagine being sick and gasping for breath at the same time! I put him to bed(when he lies still he breathing is ok), but we had a fairly disturbing night culminating in an ambulance dash at 6.00am to A & E.
Once there we had the usual nightmare of trying to find a vein to insert a canula. In the end a young doctor did it in his neck, (the only option left) with the aid of an ultra sound machine.

Blood test revealed that his haemoglobin was good. X-Rays showed no evidence of clots and the chest was clear, so they're still trying to figure it out.

I left him on the ward at 2.00pm and came home to catch up on some sleep, only stopping briefly enroute to buy mince pies. I felt I needed a treat!

Roger's Home!

Just to quickly report, (because I don't have much free time) that Roger did get home on Thursday. The discharge procedures took all day, and were finally completed by 6.30pm. We got in just after 7.00pm and were pretty exhausted.

He is as weak as a kitten, and has lost 2 stone in weight. I am trying to feed him 'good stuff', home made soup etc, but he has the usual pattern of eating disorders (it was the same last time) so it's not easy by any means.

Nurse comes in daily, and she's arranging for his GP to drop by and take stock of the situation.

Anyway it's good to have him under our roof again!

Good News And Bad!

On Monday evening the consultant came to visit Roger. The good news is that they are considering Thursday as a possible discharge day, which is great!

He also broke the news that when he reversed the reversal operation, because it had to be done quickly, as an emergency, the stoma was plumbed into the small intestine. It cannot stay like this permanently, and therefore he will ultimately have to have yet another operation to connect it permanently to the large intestine. Mr. F will discuss it further when we see him in out patient's clinic.

Unfortunately it was after visiting time when he turned up to see Roger, so he was on his own when he received the news, and was quite upset, as you can immagine!

Anyway we will now concentrate on getting him as fit and fat as possible for future surgery.

I Hardly Dare Blog!

I hardly dare blog this, but it's the 3rd day running that I've visited Roger to find that he hasn't been vomiting. He hasn't been feeling sick, and he's eating and drinking normally, and beginning, I think, to put some weight back on ever so slowly.

Mr. F wants him on antibiotics for 2 more days and then wants to observe him for 48 hours of not being on any medication. If all that is successful then a discharge date will be discussed.

Oh Happy Day!!!

Don't Let It Get Any Worse........ Please!!

Yesterday afternoon was one of the worse moments of my life without a doubt. Roger was sitting in a chair when I visited, and said he was feeling a little better. He told me that it was imperitive that he drinks plenty, as there has been some kidney damage through dehydration.

One of the doctors arrived to set up a drip with fluids, so Roger got onto the bed. The doctor wanted to find a vein ( almost impossible with Roger) to take bloods. He had a couple of tries, but couldn't manage to find one. Roger got a little shivery after that, so I suggested he got under the covers and he dosed off. I scanned the newspaper until the consultant arrived. Roger then woke up to hear Mr F say he would like Roger to have an urgent ct scan to see if there is something they are missing, as he isn't exactly thriving.

After Mr F had gone Roger said "Who was that?" I said "That's your consultant. He did your op." He said "I don't know him" I said "You probably don't recognise him with his haircut." Roger then looked at me intently, and I asked him if he knew who I was. He said that he thought so. I said "What's my name" he said "Sally." I reassured him that I had to leave him for seconds, but I'd be right back. I then rushed out, grabbed the sister and said "Please come quickly, my husband doesn't know who I am." After that all hell broke loose! Roger was talking complete gobbledygook. He had four doctors around his bed doing all sorts of tests. I was told that they must take blood from the femoral artery in the leg, and they advised me to leave the room as it would be distressing to watch.

I rang Rob at that point and said "Please get here fast!" Sitting along the corridor with the sister, I became aware that everybody was running, doctors & nurses (like when you see a crash call on the tv hospital soaps) and I knew that Roger was the cause of it. Surreal!

Rob turned up then, and eventually we were told that Roger was calmer, and we could go in and be with him. He looked calmer, sitting up with an oxygen mask on. The registrar came in and expained that Roger had an infection that has gone to the blood. They had just given him an intravenous dose of a broad spectrum antibiotic, which he will stay on until such time as tests reveal what exactly it is, and they can then target it specifically.

Rob & I left the hospital feeling absolutely drained. By that time Roger was happy to be left, and was waiting to go down and be scanned. At least now we know why he kept vomiting.

To finish on an optimistic note..... a nurse from his ward has just this minute phoned to asked me to bring something in for him when I go. She said " He's back to his old self, It's amazing, and he remembers nothing of yesterday afternoon."

I'm sure It will be imprinted on my memory forever!

What Can I Say!

When things change, they change dramatically, so that I really don't know what the situation is anymore. Roger is like a balloon that they keep trying to inflate, but just when they think they've succeeded, down he comes again.
Yesterday he was in a very low state again. He had been vomiting in the night and was dehydrated again. They had him XRayed to see if the vomiting was caused by an abdominal blockage, but that came back clear. Now they think it could be an intermittent blockage, so the plan yesterday afternoon was to give him something to speed up bowel action to try and flush it through. He cannot stand up without feeling woozy, due to low blood pressure & dehydration I suppose. His weight has plummeted.

I spoke to the Registrar, who came to see him just before 5.00pm yesterday, who told me about the plan. I then went straight to Rob & Suze's for dinner. It was therapy for me to feed and help bath the baby.

I never know what I will find when I go in to see him at 2.00pm every afternoon, and that's the worst time of the day........waiting to enter the ward.

I'm sorry that I can't be more positive.

What a Difference a Day Makes!

Friday

After the terrible day yesterday, when Roger was dreadfully low & sick & frightened, I went in this morning to see how he was doing. I was astounded to see him sitting up in bed and reading the paper. He was most definitely 'back in the room!' He greeted me with a smile and told me he was feeling so much better. I can't tell you how relieved I am feeling.

The test results have come back clear, so we don't have to worry about that anymore. I can't say what made the improvement, just a glitch that had to be overcome. Very difficult, but he's a fighter!

The Registrar came round just before I left and he acknowledged the dramatic improvement, and said that on Monday if all is still going along fine, a date will be set for him to come home.

I must now tidy up the tip we call home!

We've Seen Better Times!

Yesterday, (Wednesday 2nd) I found Roger very poorly when I visited. He had been vomiting all night, which obviously hurts & exhausts him.

They thought it might be the antibiotics that were making him sick. He was back on the anti - sickness drug Cyclizine intravenously.

I had a feeling that I might be called in the night, last night, but mercifully that didn't happen. However, I got a call from a nurse on his ward in the morning to say that Roger had been vomiting again and was very, very low. Please would I come in right away, instead of waiting for visiting time.

A doctor who had been attending him, took me into an office and she explained that they suspect he has contracted C -Difficile, and that is what is causing it. They are waiting for the tests to come back & this should be around 6.00pm. She said it can happen when you are on antibiotics for a long time. I sat with him all day today. He's not eating, as a) he's scared he'll start vomiting again and b) he feels too awful to think about eating. They are giving him fluids through a drip.

Once they get the results they can start to treat it. In a way I hope it's what they suspect, as they'll start right away. It's better than not knowing what it is, or how to treat it. He was due to go down to have an x-ray later today, just to make absolutely sure there are no blockages anywhere.

I will go in early tomorrow to be with him again.

Sitting Up & Taking Nourishment.

This is the second day I have visited Roger to find he is sitting up and smiling. Very good news, although he still looks thin and delicate. The main thing is that he is eating well, so will soon put on weight.

He's still connected to the morphine machine, but by the end of today they hope to get him off that, and on to oral painkillers. He is still having antibiotics intra venously. As soon as that finishes I will feed him daily Yakult.

The surgical team visited this morning and are pleased with his progress.

You Won't Believe This!

You won't believe this......I couldn't!

I went in to see Roger this afternoon (first time since his operation yesterday) and he was in alot of pain from his very swollen undercarriage. No morphine had been given since he came up last night, because it has to be written up by a doctor,, and when she arrived she was totally ineffectual couldn't make a decision & left without doing anything. Roger was generally underwhelmed with her.

He was v unhappy and then Mr F (his surgeon) appeared. He said "I'm not really working today, but just popped in to quickly check on my patients. How are you Mr. Singer?" Roger told him that he was in alot of pain, not from the wound, but from the swelling. Mr. F had a look & said "That will have to be lanced. I'll get on to theatre now and organise it for this afternoon. In the meantime I'll write you up for some morphine."

I said to the surgeon "Roger was in alot of pain yesterday from his undercarriage and he was on Oramorph when he went down to theatre yesterday, could you tell me why it wasn't lanced then?" He said "I'm sorry but we weren't aware of that!"

How could he not be aware of it!! He knows what was happening to Roger, so how could he just mend the leak, and do sod all about the faeces already in the system?? I find that incredible!

There's no question that he's a very caring and experienced surgeon and very approachable, so I just don't know the answer. What I do know is Roger had yet another 'general' at goodness knows how much extra expense to the health service, not to mention personal trauma to himself.

I had to leave soon after that, but hopefully it's all done and he's back on the ward now. I trust I will find him happier tomorrow when I visit.

Friday 28th Oct.2011

The surgeon rang me an hour ago to say that the 'matter' that is leaking into Roger's system and giving him such pain, is faeces leaking through from the original hole, which has opened up again.
He cannot now wait for a second opinion from St. Marks Hospital, as they're taking 6 to 8 weeks to see people. Therefore he intends to do an emergency operation this afternoon to cure the leak and to reinstate the colostomy bag.

I will go in this afternoon to see Roger and stay with him until he goes to theatre,which won't be until late, because he has eaten breakfast, so they must wait.

There's nothing more I can say right now. We just have to await the outcome.

In Again!

I was going to wait until Wednesday before I started chivvying the hospital, but it became clear by lunchtime Tuesday that Roger was in pain and very despondent. I made a snap decision to ring the surgeon's secretary and see if the referral letter had indeed been sent, and was it marked urgent?

His secretary didn't know what I was talking about. It seems that they'd told Roger what they were going to do, but had neglected to tell the secretary. Jolly good job I rang!! No letter had been sent.

I told her that Roger had been sent home to wait for an appointment at St. Mark's, but he could not sit down or walk far, and could only lie on the bed or sofa, and he couldn't go on like that. She said she would speak to the surgeon. She very quickly got back to me and said that the surgeon had said that if Roger is that bad he must come back in, because it would be weeks before we would hear from St. Mark's. Why did they send him home last Saturday then?? He went in again on Tuesday evening, but so far hasn't progressed from Clinical Decisions Unit. When I left him at 5.00 this evening, the surgeon had still not been down to see him. Hopefully he will be down later on this evening. More anon..............

Out Again!

I was eventually discharged on Saturday Morning en-route to St Marks - but when?! I can't sit, only stand or lay. We'll start chasing a bed on Wednesday!

I don't think we've advanced very far from admission - the infection is under control but we are no further forward in terms of sorting out the underlying problem.

What Happens Next!

Today Mr. Farouk's registrar came to speak to Roger. It seems that they want to refer him to St. Mark's Hospital in Harrow, where they are experts in colorectal matters.

I've googled them and they look favourable. It is both a national and international centre for colorectal surgery. Mr Farouk will request an urgent admission, but he doesn't know how busy they are there at present.

In the meantime Roger is to come home and wait. He hopes that it will be fairly speedy, as at present he can't sit, and he can't walk far either.

So...........home tomorrow to pick himself up, dust himself down.........and start all over again!

MRI Scan Result

The result is out. It clearly shows that there is a 'collection of gases & fluid' of an area of 3cm in the perineum, between the symphysis pubis and the base of the penis. It is thought to be traveling down through the base of the penis through the space left behind where Roger's urethra used to be (it was removed in the cancer op of 2009) down towards the scrotum. To complicate matters there is also a tear/hole further down, and as I understand it, is possibly escaping out through the hole & leaking into the colon.

That is what is happening! To find out what is to be done about it, we have to wait until tomorrow (hopefully) when the surgeon will be around to speak to Roger. I hope the timing is such that I can be there too!

We are getting there albeit very slowly.

Will endeavour to keep you posted!

Tuesday Update.

Roger had his MRI scan this morning. It took 40 mins. and the whole process was noisy. The pictures were good he was told, although the results weren't in when I left to come home this afternoon.

Now! You know when something happens, and you wish you'd acted differently at the time, 'cos with hindsight it's all soooooo clear? Well! I'm having one of those moments now. Just before I left the building tonight to come home and eat, a young doctor appeared at the foot of Roger's bed and said she had just come to update us. Mr Farouk (the surgeon who did the reversal) wants to pop down and see Roger when he's finished in his endoscopy clinic this afternoon. The results of the MRI scan aren't in yet, but he wants to get a second opinion from a surgeon at Kings College Hpl.

Mr. Farouk is quite willing to see Roger as an o.p in his clinics, but he feels that once he's off the antibiotics and is stabilised as far as the urine infection is concerned, then Roger can go home.
What do you make of that?

If the results aren't in yet, why is he seeking a second opinion? He doesn't know what it is yet.
Or has he decided that whatever it is, it's not in his field of expertise. Is he hoping to get the 'Kings' surgeon to do whatever is necessary? If so, is the guy going to come to the RBH or do they expect me to get Roger to 'Kings' and will it take another 2 years wait?

In the meantime Roger seems to have turned from Lion to Lamb. Where he was once saying 'I'm not yo-yo ing back & forth, I'm staying here till something's done." He's now saying "Well! I might as well wait at home as be here."

It wasn't until I was eating my dinner, that I thought, you stupid devil, you quite clearly should've hung on there until Mr Farouk came down. Is he trying to pass the buck I wonder?
I just hope the results are out now and it's a simple procedure and something is done quickly.

We'll see what tomorrow brings!

It Was All Going According To Plan!

It was all going according to plan, but you know what they say.......The best laid plans of mice and men!

No sooner had Roger announced that it was official.....he was on the road to recovery, than it all kicked off on Tuesday night with him being violently ill, and culminated in a doctor arriving in the dead of night from Westcall, the out of hours service, to give him an anti-sickness jab to stop him vomiting.

This stopped him being sick for 8 hours or so, but, as hard as I battled to rehydrate him and keep his medication down, it was an impossible task. He also developed something scary called the rigors, which is violent shaking from head to toe.

The next night was some or all of the same, plus a very high temperature 39.7 and it became obvious that we were left with no choice, but to call an ambulance in the early hours.

He spent the first 2 nights on CDU (Clinical Decisions Unit) and now he's on Redlands ward, where, despite giving him intravenous drugs and paracetamol, his temperature is still through the roof alot of the time, and he still feels sick & isn't really eating (not as we know it!) and they don't really know what's causing it at the moment.

I got up this morning and went for a run. It makes me feel so positive both physically and mentally, and I need that strength if I'm to cope with Roger and everything else at the moment. Stuck washing on before I shot out of the door, came back, had a shower, hung out the washing and had breakfast.

Then! set about trying to cancel the holiday booked for Monday at Center Parcs. It was laughable (in an hysterical sort of way) press this button, press that button, at one stage I almost pressed the wrong button and very nearly ended up booking a spa & facial. Eventually got through to a human, who gave me the telephone number of the insurance co. She told me they would give me a claim number and I must get back to them with this number and then they could proceed.

This I did. I then had to go through the whole charade again of getting through to Center Parcs. Of course you never get the same operator twice, and this one, Sarah, told me that as Mr. Singer originally booked the holiday......he must be the one to ring them in person and request a "Non Arrivals Form". I pointed out that Mr. Singer was languishing in a hospital bed as I spoke, and that that was the reason for cancelling the holiday, but Sarah was having none of it! I said "This is ridiculous! Just supposing, heaven forbid, that he didn't come out, that he in fact, died in hospital?" She said " We would look at that event when it arose."
After that I had to lie in a darkened room for a while, to recover.

This afternoon I found Roger about the same, and waiting to go for an ultrasound to see what this uncomfortable region is in the perineum. They told us that it was indeed fluid, as we suspected, but they couldn't say what it is or where it is coming from. Roger thinks this is the key to all his recent problems, and I'm inclined to agree. Next, to help them find out more about the fluid, he must have a MRI scan, which will be on Tuesday as far as we know. Will keep you all posted!

Getting There

Dressings are indeed down to every other day and the mystery pain has diminished so I'll be back on my bike next week.

I had my bi-annual scan yesterday - but won't know the result till I meet my Urologist in December.

We're going to grab a few days away - at last! only Center Parcs but it will be a break.

Check-up Time!

We've just been to see the Colorectal Surgeon and he's happy with progress, still got a bit of a twinge but he says that should go soon and still having daily dressings - though they should drop to 2 daily next week - it just ties us down all day for 10 mins at 2:30! I'm awaiting a date for a CT scan prior to seeing the Urology Surgeon for a review in December so he will piggy-back on that to check out my twinge (that's a technical term used by us professionals!).

Can't get on the bike yet but can walk and drive OK

On The Road Again!

I'm driving again - Hurrah!! A great move forward! and the dressing have shrunk from 6" square to 3". I have to go to the surgery each day for them to be renewed and in a week or so that will be every other day.

We watched David Walliams go by - didn't he do well!

If he raises £2m he should get a Knighthood!!

Have you sponsored him? https://www.sportrelief.com/donate/walliams

Moving Forward

We're moving forward - slowly! The District Nurses' home visit today was her last, now I can get to the surgery each day for dressings and presumably it will drop to every other day soon. The two holes have become one which makes it easier to dress - they fill it with an absorbant material and it heals from the inside out or bottom up - too much info? sorry! - I spared you the photos! I finish the second lot of antibiotics tomorrow as the recent swab of the wound showed nothing of concern.

I'm feeling OK in myself and getting stronger each day, I just walked to the BMX track in Hills Meadow and back - I want to get to the lock for tomorrow lunch time when David Walliams passes through on his Thames Challenge swim - what a star! - please sponsor him! https://www.sportrelief.com/donate/walliams

My 'Resident Nurse / Pharmacist' continues to spoil me - I would not have survived the last couple of years without her!

Not so Fast!

Community nurse came to pack & dress the wound this morning. It is the first time I'd actually seen it with the dressing off. It looks horrific! They stuck it with glue at the hospital, instead of suttures, and the glue has come adrift, leaving two gaping holes. She now tells me she suspects an infection has got in, so he's back on antibiotics. He also has a touch of cellulitis on his left side, next to the wound. She thinks it will be a long job. I am feeding Roger a high protein diet and hoping for speedy healing. there's nothing more I can do for him. On the credit side. the plumbing is going awfully well. No need for laxatives, but perhaps that's too much information!

Honey, I'm Home!

Or should it be 'that was the week that was!' - a tough one but that's to be expected - it was a big rebuild job!

They said I could go home this morning and I couldn't wait!!! - got home about 1:30 If !!!!! nothing goes wrong I should be up and about in a couple of weeks and driving as soon as I feel confident to do an emergency stop. Will have the District Nurse in every day for a while for dressing renewals and to keep an eye on me.

Nothing is ever straightforward!

Since the last blog Roger has had some difficulties. There seemed to be a "stoppage" in the system, which stopped him performing bowel action. Then on Sunday evening he was violently sick. Perversely, that seemed to kick off the bowel action (albeit slowly), although it could've been coincidental. X-ray showed nothing conclusive, which in a way was good news.

Yesterday I met him on my way up (he was on his way down) to have ultra sound. It seems there's an area on his left side that is swollen & sore. Verdict: two pockets of fluid (they couldn't tell exactly what from ultra sound) but will probably aspirate them soon. Might even have done it by the time I see him this afternoon.

As for me, a 16hr. power failure on Sunday and lack of sleep due to the electricity guys digging a massive hole in the road adjacent to our flat, pneumatic drills & the like, all night, has not helped to lighten my load! Sorry! couldn't even blog............no internet! DISASTER!

All is Well!

Roger is sitting up and taking nourishment. He looks very well, has finished the book he took in to read, and he slept well. All signs of a good recovery.

Whilst I was there this afternoon, the orthotics man turned up to measure him up for a sort of corset to help support his stomach until it grows strong. The registrar, who assisted the surgeon, said he had good muscle tone there. Roger attributes that to regular weekly Yoga sessions. Sadly that'll be off the agenda for a couple of months. Never mind! Small price to pay!

Has Anybody Here Seen Roger?

Finally tracked down my Houdini husband. He is back on Hopkins ward in a side room. Apparently got there at midnight last night, and this afternoon found him sitting in a bedside chair looking remarkably well considering.

Turned out to be a very complicated day. Mr. Uppal from plastics, couldn't get there until 1.30pm, so they had to jiggle the 'list' around to fit everyone in. Some, inevitably, took longer than they thought. Mr Uppal arrived at 1.30pm, but Roger couldn't go down to theatre until 4.30pm, because of this Mr Uppal couldn't wait, so he went, and Mr. Farouk ended up doing the reversal and the hernias all on his own. Fortunately it all went very well, and Mr. Farouk is pleased with his handywork.

I have to say that Roger definately looked trimmer around the stomach, and provided the colon can "perform" in the conventional manner ( that we all know and love, but Roger could only dream of for the last two years) then he will be allowed home. Oh! they're also waiting for the drain from his op site to run clear, but perhaps that's too much information. Actually! It's all a bit basic anyway! If anyone wants to pop in and see him in the evening I'm sure he'd be pleased to see a friendly face. Visiting is until 8.00pm. I go along in the afternoon. Check first to make sure he's still there. Don't take flowers as they're not allowed on that ward (hygiene).

I can relax now that I know where he is, and I have seen him.

The Big Reversal Day Dawns!

Roger was instructed to be at the hospital at 7.30am. He was told he would be second on the list, therefore breakfast was a glass of water at 6.00am. By 9.00am he was back and knocking at the front door. Apparently the plastics surgeon(doing the hernias) could not get there (we'd previously been told by Mr. Farouk's secretary, that it had all been sorted and Mr Uppal would be there) until 1.30pm as he had been double booked and couldn't get out of the morning booking (obviously a private patient) everyone on the team knew this, but neglected to tell the patient. Roger had instructions to return to the Royal Berks at 12.30, and he was allowed to drink water until 11.30am. Undaunted (you know Rog) off he went at the appointed hour, 2nd time lucky! We had been informed that the op would be 4 hours minimum.

I rang the ward at 6.30pm to see how he was, and I was told he wasn't up from theatre yet. When I rang at 7.30pm he still wasn't up from theatre. I said to the nurse "I understand he went down at 1.30pm for his surgery, I wonder what's keeping him?" She said "No! he went to theatre at 4.30pm."

If this was the case, he wouldn't be back on the ward until half an hour after close of visiting at the earliest!! She also mentioned that it's possible he might spend the night in ICU she didn't know at this stage. Anyway! I think we can safely say that knocks visiting on the head tonight.

Let's see what tomorrow brings!

Nearly there!

We went to see the Plastics Surgeon last Tuesday at Heatherwood Hosp (Ascot) to be told by his Registrar that he was NOT down to do me on the 15th!!!! mild panic ensued!! He promised to sort it out and call later - which he did, and said he thinks it's sorted but to call Mr Colorectal Surgeon's Sec on Tuesday to check - just done that and she says it's all OK, phew!!!

That's the good news - but it isn't looking good for Sept-Nov in Crete - I'll probably have to attend a post-op check-up after 6 weeks! that's if I don't get every bug going like last time!!

AT LAST!

I've got a date for my reversal op at last!! 15th August 2011 - after badgering my Consultant, Colo-rectal Surgeon, Plastic Surgeon, Berks Hospital Management, GP, and even MP we've got a date - it's still got to come to fruition....... or am I just being a cynic? It's a start, anyway!

Otherwise we're well, moved into the newly done flat and it's great, as is living in town, can't believe how quiet it is!

Will keep you posted!

New Arrival!

Nothing to say for ages then three at once!

Connor Jarvis Singer arrived just before 12 noon today (3-6-11) 8lbs odd. Mum and Dad are fine if exhausted! G'Dad & G'Ma are delighted! We could hear him shouting the odds in the background can't think who he takes after! Hope to see him tomorrow.

We moved into the flat yesterday, so far it's working great, though we don't know where we're going to put everything! we haven't emptied the old place completely yet! - I see a 'Big Yellow' storage unit on the horizon.

Saw my Consultant for my 6mth check-up on Wednesday and he is happy with everything, doesn't want me for another 6mths. He was amazed I haven't had my reversal yet! and is going to chase it with gusto! so watch this space.

Must go, boxes need emptying!!

Oh Blog I have neglected you!!!

It's been busy to say the least! We're still camped out while we do up our place, but it's going well. Rather than mess about, moving the odd door opening, and making a new one here and there we gutted it! then replaced the walls where we wanted them, and swapped the living and bedroom in the process.

We will brick-up the old front door, making the little hallway into a walk-in wardrobe and replace the window on the side of the house with a new front door, then we can open up the ex-bedroom window into double doors into the new conservatory - which they threaten to start tomorrow!



The ceilings and walls are now plastered, and painting will start next week. First fix electrics are in as is plumbing and heating and the lads have started tiling - shower room, kitchen area, little wc and hall, the rest will be carpet. We hope to be back in by the end of April. .

Health-wise I'm well though still awaiting the op to reverse the colostomy - best guess is June! but which year?

We still need to get over to Crete to get the car - and it's contents - sometime . . . . .

Moved at Last!

At last we've moved, we thought it would never happen! - there's got to be a better way!

Everything is still in boxes as we're 'camping out' in our new place while we wait for our temporary digs to become available, we hope on the 18th, then we'll move there while we do up our place, and then move in properly in a few weeks time.

Does it now become - 'Builder's Blog'??