Too Far!!

Morning all.  I managed to get some physio in yesterday.  My chest as I have been saying was pretty wheezy and quite tight too so I wasn’t expecting miracles.  I was thinking along with the wheezyness and the fact that I hadn’t done any on the weekend as like almost everyone else in here, “they don’t work weekends”, that I  probably will fall back slightly.  Well we headed off for the race track (The corridor into the ward) where it is a bit quieter and less chance of interruptions although I recon it’s so nobody can see how hard these slave drivers push me and use their whips far too often.  On your marks, get set, GO!!  I was off at the usual snails pace puffing and panting away.  Well thinking back to Friday I seem to remember doing about 15 metres the first time before sitting down and to be honest I would have been happy with half of that this time.  Well I’m going like a steam train stopped at the station now about -000000009 mph.  Finally after about 5 metres I had to sit down quickly, panting like an I don’t know what? Jeez this was scary now as I had managed stupidly to cross what I call “The Line Of Control”.  What this is, is there is a certain point at which you are, although puffing and panting away in control of your breathing and able to recover fairly easily although it still takes time.  If, like I did you cross that line then you are in the realms of having no control over your breathing at all and as such you struggle to get in each breath, you start to panic which makes your breathing quicker and therefore worse.  It’s very much like having an asthma attack.  You start to think this is it, you are going to die because you can’t get in enough oxygen.  In fairness it is a very fine line indeed and I do usually have a good idea where it is but I think because of trying to make up for the lack on the weekend etc etc.  I did my usual trick and pushed too hard.  I think I scared the poor physio’s again too although I’m sure it wasn’t the first or last time they have seen this.  It took me some time with their words of encouragement as they could see I was in a bit of trouble to get my breathing back to normal a bit.  The problem was also made worse by the tightening of my airways due to the Bronchialitis so I don’t have as much lung to use as before.  Well I didn’t think it would make that much of a change but it did.  I really must learn to take things slow as I keep doing things like this to myself.  I just seem to have no patience in this sort of thing but I’m okay with every other thing like waiting around for people and stuff, it just doesn’t make sense.  Okay then, we decided to have another little walk but this time under strict instructions to not try and kill myself again.  I pushed a little although managed to get about 5 metres before slumping back in the chair puffing and panting.  This time I hadn’t pushed too hard and as a result the recovery time was a lot better.  We decided that it might be a good idea to stop there for the day and go back to my cell and have her do some cleverly aimed thumps on the back to try and release some of this muck that is rattling round in my lungs.  I don’t like the way she grins when she is doing it though as if she is getting far too much enjoyment out of it for my liking.  After a few minutes of this and some deep breathing exercises it was time to try and cough it up.  Well here goes, drum roll please,brrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!       Cough, cough, cough, and cough and……………..NOTHING!!!!  You can hear it rattling around it just doesn’t want to come out yet.  Hopefully it will appear later on which it sometimes does, if not try again tomorrow I suppose.  

Merlin flew in fresh from his hols.  At least he hasn’t forgotten his timing as per usual he comes right in the middle of Lunch and it looked nice too Roast Lamb.  He basically explained about having to stay in for the physio assessment etc and the changes in nebuliser’s and anti biotics that are probably causing the wheezyness so lets just wait and see for a few days.  I brought up the idea of the light treatment with him.  I think I explained my point fairly straight to the point and politely.  I said, “I WANT THAT BLOODY TREATMENT AND I WANT IT NOW”.  Subtle see?  I think I put across my point of view and certainly left him in no doubt as to what that was.  In a nutshell I just think that as the treatment is non evasive and doesn’t involve more drug therapy it can still be done alongside the present cyclosporine and steroids.  It is much like just replacing the PUVA which was only for the skin GVHD with this new treatment which again is only for the skin GVHD.  There seem to be some issues as to lack of conclusive evidence of its usefulness but there is a certain element of this with everything.  My feeling is this.  That any treatment they feel would help to put an end to these problems can either fail or succeed.  So if there is one that involves no drugs I would rather take a chance on that before one that involves drugs.  It makes sense I think.  

Well at least he knows how I feel now and has said that he will bring it up at the weekly Pow wow on Wednesday.  So watch this space I guess.

Okay then another long blog. I just don’t know where they are coming from at the moment.  Sorry!!!!!!

See Ya!!

rest and relaxation

A full day of rest and relaxation was called for yesterday, not that I have much choice in here on the week ends, what with every department closing down and because of being in lock up not a lot of people come in either.   Oh poor you I hear you all cry but I don’t meant to search for sympathy buy hey it is a nice feeling sometimes, isn’t it?  

I knew when the nurse came in, in the morning that not a lot was going to happen.  She had asked if my dressings needed to be changed which I told her “Yes, Every Day” as I have told her before.  She turned round to me and said those words I hear far too often these day and they are, “I will do it if I get time to, but I am very busy”.  Mmmm I might allow you to do it if I feel like it should be my reply really but no, I kept my cool and just explained that I don’t care who does them or what time they get done but they will be changed today sometime as I will not let them go back to how they were.  They are healing up quite nicely now at last.  

I was gutted too this weekend.  I was thinking that as it was Bonfire Night there would be loads of fireworks being let off and seeing as I have this elevated view pretty much over all of Cardiff right out to the Barrage really, that I would have a great free firework display.  I did see quite a few going off which was nice and I also somehow got the smell of gunpowder in the room as well as I guess there must be so much in the air that it found it’s way in.  The main downside is that you don’t quite get the Booms and Bangs and Whoosh’s of them going off, and you don’t get the hotdogs with stewed onions too and Jacket Spuds cooked in the embers, there’s nothing quite like them and however hard you try you will never replicate it in the oven etc with lashings of Anchor Butter, it’s got to be Anchor.  

I guess you’ve all heard by now that Saddam Hussein has been found guilty and sentenced to death by hanging.   I guess there was never going to be any other outcome but this.  It does throw up a lot of issues though.  The whole point of the trial as far as I was led to believe was that he be tried under Iraqi law and by a jury of his peers, which it appears to have been, all be it probably a lot of intervention from Bush and Blair amongst others.  The Death Sentence, more so the Hanging does bring up some issues.  I suppose as westerners our attitude in the main would be that of let the evil man spend the rest of his days under lock and key and isolated,(a bit like me ha ha!) and play into his plan and hang him so he becomes some sort of martyr.  The outcry had started almost immediately on the verdict being given those for and those against all shouting there corners or points of view.  My feeling is this, not that it is worth anything but it fills the blog if nothing else,  that’s, if the whole idea was for the Iraqi Judicial System to deal with this then the Iraqi sentencing  should be included in that too as it comes as one complete package.  It’s like in some ways you get caught for shoplifting in Great Britain and found guilty by a Judge and Jury yet you are sentenced according to Tibetan Law “They Chop Off 1 Of Your Hands”.  Is this acceptable?????? I think not.  So as he has been convicted and sentenced under Iraqi law the sentence of Hanging should be carried out whatever our beliefs opinions are.  Is it right for us to force our culture and beliefs on another nation/culture??    I think however the outcome will probably involve Saddam spending the rest of his days in some form of prison where he will be able to continue to inflict his dictatorship views on people and doubtless still have access to the finer things in life.  Some punishment I know??

Merlin should be back from his jaunt today too so I am looking forward to his visit.  My chest has been a whole lot more wheezier this week end and in fact it is far more wheezy than it was when I first came in.  I’ve not  had much relief at all and the bags under my eyes are now builders sacks and getting really heavy.  I did have a brief chat with The Emerald King yesterday when he popped in about it but want to try and talk to Merlin too.  That’s about this Light machine thingy that I really must get the name for that might help in the GVHD skin problem.  I know that The Emerald King was saying that really at the moment my main problem is my chest and this treatment will do nothing for that at all but in some ways the skin problem is having a large effect on my breathing capabilities so it will help and the fact is also why cant I have treatment for both at the same time as I did with PUVA??  After all, the light treatment is non evasive which I could do with after all the drugs that have been pumped down me lately and the cyclosporine for the overall GVHD and the possible GVHD of my lungs that they have been talking about could continue alongside this.  My chest has pretty much been this way for a few years now sometimes better sometimes worse and an improvement would be really nice, however I don’t think we can simply just put the GVHD on a back burner for now till they sort out my chest as  it is fairly intolerable now and also playing a big part in my physical weakness and inabilities.  So fingers crossed for me that I can convince Merlin of this.

Okay off to prepare.

See Ya!!

Oh No!!

Oh No!!
Oh no I haven’t got anything to rant about.  It was a day of basically nothing really, well nothing worth writing about anyhow.  The only minor point was that I now have a list of Microwave Meals, you know, the really healthy ones???  They have been told apparently to come I and ask me what I want for each meal earlier on in the day and then bring it straight to me when it’s cooked.  A bit like The Royal Treatment I know but hell I am worth it after all.  The other thing is that if the opinion is that they can buy me off with a few Curry & Rice’s and Tagliateri’s then they are sadly mistaken I have every intention of pursuing these problems I have had when I have more time when they release me.  I’m hoping that I am going to be able to gather some other information from other patients, nurses, doctors, family and friends etc as I know it is not something that is specifically aimed at me.  There’s only so many times you can be told “It’s being looked into”before you realise they are trying to pull the wool over your eyes. Well I have reached that limit now.  If Jamie Oliver can do it I’m sure as hell I can too.

Okay as it’s a quiet day I was thinking of posting an update of all the many characters in this pantomime of mine called life as some new ones have come and some old ones have gone etc so here it is.

The Main Characters

The Wizard – Dr Keith Wilson, overall spell master and spiritual leader also The Unbeaten Calypso King for the last 10 years.
Elgin The Owl – Dr Ermesh, Wizards eyes and ears in his absence, also often seen in the library with his head buried in the books, he really must learn that you can’t fit your head through a gap too small then expect to get it out in one piece
The Sheik – Dr Hanni Osman ,currently balancing his duties on the ward and day unit along with trying to keep control of his huge Harem and Oil Fields and Heard Of Camels.
Alibaba – Dr Mumtasir Haj,very happy go lucky doctor also covering both Day Unit & the Ward. Learned everything he knows from his days as an disreputable Persian rug salesman on the streets of Cairo whose catchphrase was “I Give You Velly Velly Good Bargain”
Lord Darcy – Dr Jonathan Kell,A very suave upstanding fellow and a grand doctor too although he has one vital flaw in that he Supports English Rugby, Poor Fellow needs some attention I think.
Astrix The Gaul – Dr Gleb Ivanov,A gentle giant of a man from the far away land of Vikings and Apple Strudel.
Gandalf – Dr Chris Pointon,a highly intellectual chappy who likes nothing like a good challenge and holds the key to the Great Book Of Spells And Potions handed down in his family for centuries, If only he could find the blinking book though!!
007.5 - Professor Burnett A rather suave Scotish gent of later years whom it is rumored that Ian Fleming had in mind when he wrote those famous stories.  Very much a ladies man in his prime.  Prefers these days to indulge in the finer things in life such as painting and decorating.

The Emerald King - Dr Chris Fagin A fine replacement for 007.5.  It is strongly believed that this gent was locked away for the first half of his life in some enchanted castle in the Emerald Isle and taught by a group of highly intelligent life forms then sent out into the world to pass on his knowledge.

The Silent Monk – Dr Kamlesh  A man of very few but still well chosen wise words.  A master in the art of Sheep Haggling it is rumored.

Penelope Pitstop – Sister Heather A racy little pigtailed Lady who likes the finer things in life like bed pans and sputum bowls etc…

Ma Larkin – Sister Noreen  A lovely cuddly lady who is kind of like a surrogate mother figure when your stuck in Heath Towers, oh and she makes a mean cocktail I’m told.

The Five Spice Girls – Sheri, Sarah, Ailsa, Karen and Mary Very talented Bunch of girls often seen on Stages throughout the land trying to fleece the poor artiste who’s trying to perform.  Renown for their spear throwing prowess amongst other things.

The Brighton Belle’s – Hazel, Pam and Cath have the uncanny knack of being able to keep control of the Day Unit and ward when it looks like all hell has broke loose.  I think it was their strict upbringing by The Nuns Of Balikissangel.

The Slop Stirrers   Various Characters involved in ruining beyond recognition anything that was once possibly going to be slightly edible.  In their defense though they do all make a mean jug of water.

The Dirt Shifters Again various people involved in the moving around of dirt and dust from one place to another.  Sometimes actually managing to clean as they go along too or so I’m told anyhow.


So I hope you now have some good visions in your head of what they look like to me and therefore realize I really must be cracking up.

This damn wheeze is doing my head in now it won’t go away.

Merlin’s back tomorrow so I better get in some rest ready for my big push to get to the bottom of this thing.  One bonus is that the dosage of cyclosporine is down to 40mg twice a day now which is well cool as it doesn’t make me ill at that level, however my throat is a bit sore but we seem to think it is down to the new anti biotic Gelder put me on so we will have to wait and see.

See Ya!!

Good Old Tesco's!!

The bacon was blinking gorgeous and went down a treat.  I think that bacon would be the main reason that I could never be an out and out veggie.  There’s just something about that smell and taste of nice crispy bacon or one of my other ways I really enjoy is to just put it in between 2 plates and blast it for just 1 min in the microwave so it’s only just cooked and still nice and juicy.  I find too by using this method if you do buy cheaper bacon the water etc that comes out during the cooking when poured over the bread adds a stronger flavour to the sandwich. Mmmmmm.

That’s enough about food for now as I think it has played far too big a part on this blog of late as it is.  Having said that though the slop stirrers supervisors as they sent 2 of them came a calling yesterday.  I didn’t hold back I can tell you.  I explained the failings of the crap service they are providing at the moment and also what my expectations were.  I felt somewhat as if it was falling on deaf ears though and in fact I remembered speaking to one of them twice in the past with exactly the same problems and the replies from her were exactly the same, “They are being looked into”.  Well they have been “Looking into it” for about 2 years now and that’s just from my moaning.   Something tells me that it’s time to do something about it instead of just looking at it.  They came up with things like the admin department keep booking the 3 regular staff off at the same time so there are constantly new people around, they have been saying they will change this for about 2 years now and also the answer to getting somewhat descent food is to send someone to Tesco’s to buy a load of frozen meals for me of my choosing mind you.  Well although I am somewhat grateful for this but what would happen if every one started complaining about the food would they just respond by buying more and more frozen ready meals instead of actually sorting out the food they are serving here.  You see the way I look at it is that they are having to pay twice for me.  Once for the usual muck on the slop trolley and again for the Tesco’s meal.  No wonder the NHS is in such a mess.  Ah well I guess its frozen meals for me for a few days and I will take up the argument when I get out of here.

On another rather downward note, I am going to have to stay in here till probably the middle of next week.  The problem is down to the physio.  In order for me to have the intensive physio I need when I go home they need to come and assess me as an in patient.  The one department can only do these on Tuesday and Thursday and the other will treat it as a matter of urgency but will not be able to come till probably the middle of next week.  This sadly means a few more days locked up here in Heath Towers, god I know how Rapunzel felt now!!  Only somehow I don’t think some knight in shining armour is coming to rescue me, maybe a fair maiden in a Citroen c1 though???

Physio went well today.  I managed to walk a couple of meters further and the recovery rate was about the same.  I seem to be progressing quite well at the moment although the telling time will be on Monday when they come back next as there is no physio cover on the week end.  I am going to try and at least do some exercises to keep it up but it is not the same as walking.

I had a surprise visitor today too.  My lovely Aunty Josie (Jacqueline’s Mum).  It was nice to see her as I don’t get to see her that often.  Loads of gossip too mostly about Jacky so I better not write it on here he he he!!  She was telling me all about her hospital jaunts this week.  Jeeez I thought I spent long enough up here but she is giving me a run for my money.  She is a sweetie.  She really must learn to take things a bit easier though as she takes on way to much love her, she’d got a heart of gold.

Okay choices choices.  Do I have the frozen Chilli Con Carne, Lasagne, Cottage Pie, Liver & Bacon, Sausage & Mash or Chicken Curry?????  Oh I don’t like too much choice can’t I just have the Boiled Ham, Tinned Spaghetti in Tomato Sauce, Swede and Gravy??

Right, bowl full of grapes it is then.

See Ya!!

Lucky Number 7!!

LUCKY NUMBER 7??

As arranged Judith turned up to take me over to Llandough hospital.  I was nearly ready apart from my socks and shoes.  I haven’t worn socks for ages until my mum bought me a sock strap sort of thing that u place your sock over it then slide your foot in.  Pull the two long canvas straps and hey presto it pulls your socks on, well most of the time it does.  Occasionally it goes on strike and only pulls them half on meaning you have to start again grrr!!  Shoes these days come in the form of slip ons as there is no way I can bend down that far anymore let alone play around at getting laces done.  I can just imagine it I’d get half way through and collapse due to lack of oxygen as all the organs in body will be crammed in tight leaving no room for my lungs to work.

Right then, after sorting out my notes or finding them to be more honest, they knew I was going yet when I asked for my notes etc they all looked at me as if to say where are you going??  Anyway off we go, freedom at last and I was thinking really seriously of going on the run as Heath Towers disappeared in the distance but then remembered I’d left my laptop there. Damn it I will have to go back for that!!!  We arrived in Llandough with plenty of time to spare after popping into Tesco’s along the way of course.  I had not eaten dinner before I left as I would have had to rush it down and besides I was not overly interested and inspired by Dry Turkey dinner and I think it was Chicken & Veg pie which as a rule is 80 percent pastry 15 percent and 5 percent Chicken.  When I say Chicken I mean chicken tasting bits of something it could be anything at all I guess.  Okay whilst munching away on my gorgeous bar-b-que chicken drumsticks and spicy jumbo sausages we arrived at the hospital.  Judith managed to wolf her food down in record time as it’s a bit hard to eat sushi when you’re driving so she had to wait.  

In we went and as usual were told to go and have a lung function test before I get to see the doc.  As usual they tried there best to kill me.  Having me coughing and puffing and panting away, then there’s the pin prick in the earlobe for blood gases and back to more waiting for the results to be formatted.  I had a look at them when we were heading back to the waiting room for the doc and to be honest they were not a pretty picture at all.  They included the last 5 or 6 test results too for comparison and there seemed to be quite a remarkable drop in all areas compared to the rest.  I know I felt fairly well last time I came in to see him.  It must have been about 3 months ago or so and the results compared to them are at least halved if not more in some tests.  The only thing I like about this particular clinic is that all the patients notes are placed in full view on a table outside the doctors room so you can see where you are in the queue and thank fully I was only third and there was another registrar helping out too so I shouldn’t be long at all.  Finally my notes which are staggeringly large and in fact are split into two huge folders and the second one won’t be long before that’s full too disappeared into the room.  I heard the dulcet call and off we went.  His face told it all to be honest.  He just looked dumbfounded.  He said “I guess you’re not doing too well at the moment then”?  ummmmm you could say that.  I went on to explain all that’s been happing of late with my chest and after asking me a couple of things it was off into the side room to strip off for him to listen to my wheezy  chest.  There was nothing new there he has heard it all before.  Okay then what can be done??  Well as per usual he seems to edging towards having another Lung Biopsy done which will mean another 4 weeks or so in hospital and then the slow recovery afterwards and to be honest I still haven’t got over the last one and that was about 15 months or so ago I think.  It involves a tube thing being inserted through your rib cage then into the lung, robbing a bit of it and then sew up the hole and will need to be done on both sides.  he knows my thoughts on this, that unless he can give me some assurance that they will be able to get to the correct diagnosis and of a possible treatment for it by doing so then I just don’t feel happy having it done.  He seems to think it might be something called Bronchialitis which is narrowing of the airways in your lungs or more likely it is GVHD there’s causing the problems.  The only conclusive way to tell if it is GVHD is to take the lung biopsy sadly and the result would be a definitive yes or no.  So in some ways I am in a bit of a tricky situation and to be honest I am not sure what to do at all.  Do I take my chances and go ahead with the Biopsy knowing what it entails.  At least this way I will have for the first time an accurate diagnosis as like the heading says I have had about 6 different diagnosis’ in the past and all from him.  Or do I try and sort it out with a change in medication that would be able to clear up the Bronchialitis if it is indeed that.  I think and have done for some time, that it is probably GVHD causing at least some of the problems all along as since the very first time I contracted Pseudomonas I have never recovered 100 percent regardless of what anti biotic treatments etc they have given me.  But on the other hand if it is GVHD then surely the imuno suppressants and steroid approach they have taken for the skin GVHD would have had some effect at least yet I am getting worse.  Well he decided that another more specialised lung function procedure would be a good idea and managed to get me straight away.  It just involves them pumping different gases etc into your lungs and see what absorption rates etc are like.  Then there’s lots of huffing and puffing and coughing and spluttering, all good fun for them to watch but not much for me.  We took the results back and his opinion was that it does look like its Bronchialitis but still doesn’t rule out GVHD.  He has recommended a change in both my nebuliser and my inhalers too.  He wants to see me in a couple of months then or earlier if need be.  Off back to prison, oops I mean Heath Towers.  I know how prisoners feel on day release now it is hard to go back in once you’ve been given a little freedom.  It was nice to get some fresh air to be honest because there isn’t any in here as you are not allowed to open the windows and as you know the door is permanently shut so I am breathing in the same old stale air and bugs and germs day in and day out.  This thing about not opening the windows has been going on for years.  It’s something to do with the rendering or rather some mould or something that is growing on it is not very good for you and there is a chance that some of these particles might get in and cause problems.  Well correct me if I am wrong but did I not pick up Pseudomonas and probably a lot of my infections whilst being in here with the windows shut and the door too and eating the same old rubbish but lets not go down that road shall we..

Okay then back now and with a few things to think about as well.  I need to have a chat with Merlin too as his opinion is vital in all this and unfortunately he is not back till next week.  There may be a technical problem that would mean I don’t go home today unfortunately.  They are trying to arrange for a physio to come to my home to torture me daily.  There are 2 services they provide.  The first one which I would think is more suitable and the physio hear strongly agrees is that the physio’s come 5 days a week for 6 weeks then reassess to see what further help is needed and the second option is to go on the community register and probably be seen about once a week which to be honest would be a waste of time anyhow.  The problem is that in order to get the 5 day a week treatment they need to come and assess me as an in patient and they only do it on a Tuesday and Thursday therefore I may have to stay till they come on Tuesday.  I know the doctor and the regular physio were trying to push for me to be assessed whilst in the day unit if I could come in on Tuesday and I am waiting to see what the outcome is later on.  It is a bit of a pain I know but if it has to be it has to be I guess.

Okay then I going to tuck into my Bacon and tomatoes for breakfast as one of my favourites is on this morning and she loves to spoil me.  You see we don’t get bacon on this ward at all its just that she borrows it from another ward she regularly works just for me.  Bless her she is sweet.

See Ya!!

More Of The Same!!

I’M BLOODY FUMING!! And no prizes for guessing what about.

Yep you got it the bloody Slop Stirrers again.

Today was going to be a quiet, calm blog as nothing of any note happened yesterday so I was stuck about what to write.  I know I am going over to Llandough later on and I was going to go through a lot of the issues/problems I have had over there in the past, but no, thanks to the slop stirrers I have been given yet more t complain about.

Well after a pretty good night sleep I sat back while the Heath Towers Express rolled through.  Last on the list is the slop trolley.  As a rule I don’t tend to eat breakfast much, I prefer as I have said in the past to have a piece of toast around mid morning.  Today however as I was awake quite early and so managed to take my pills earlier than usual I was going to have my usual 1 piece of Brown Toast and 2 Butters.  I always, always, always have the same.  Well I waited and waited and waited till 9am then I buzzed the nurse to see if they had missed me again but was thinking, no they wouldn’t do that, not after all the complaining I have done recently, surely they are not that stupid.   Sadly, THEY ARE!!!!!  The nurse informed me that she had been ages ago.  As you can imagine I was rather unhappy to say the least.  The nurse went off to find her and ask her to come back and sort it out for me. Okay calm down I was thinking to myself there might be some genuine excuse after all although I can’t think of any that would satisfy my anymore as they have used them all now.  20 minutes later the nurse I had asked came back and asked whether she had been to which I replied “NO” although in a more graphical manner than that.  I had vaguely heard her knock next door and apologise to the patient in there for missing them and I guess subsequently went off to get them their order.  I waited thinking that she will be in now and a minute, stupid git I should have known better.  Why is it that it’s always bloody me??  Have I been that naughty in the past??  So the nurse Paul, a tall stout chap who always reminds me that he should have been in The Young One’s with Rick Mayel and co, ha ha ha.!!  came back and said that as far as she was concerned there was a nurse with me who told them that I didn’t want anything.  Well the only nurses to be in before this were all at about 7am and unless they have changed the timings they do their run I don’t’ think that is the truth.  Hell I know it isn’t.  When she popped her finally through the door she said,”oh no it wasn’t him no”.  That I take it was my apology because it was the only bloody one I got.  She asked what I wanted and I told her, “ONE PIECE OF BROWN TOAST AND 2 BUTTERS PLEASE”.  Along with this I tempted fate by asking if she could also bring me from the white fridge in the kitchen a bottle of Banana Smoothy which my wife had put there along with another 7 or 8 others.  They all have my name on them and they are in the bottom.  Well off she went.  10 minutes later she returned with 3 pieces of brown toast and 3 butters and 2 marmalades, and no Smoothy.  What a bloody waste of money as I will only eat 1 piece and 2 butters that’s enough for me.  If I wanted bloody 3 pieces I would have asked for bloody 3 pieces.  She explained that both she and a nurse had looked for the Smoothy but could not find any.  I assured her that there should be at 7 of them there in a carrier bag in the bottom of the white fridge.   Wow!!  Surprise, surprise the nurse came back with a bottle shortly afterwards.  No wonder they are forced into having to buy in sub standard quality food to serve up when they are needlessly throwing away loads of stuff that can be avoided.  Take breakfast for example. They ask you what you want.  If you ask for toast they ask you do you want butter, do you want marmalade and sometimes how many pieces.  You might as well say 25 pieces of pink and green spotted toast, 13 margarines and 89 strawberry jams because you are always going to be given the same 2 pieces 3 butters and 2 marmalades although I think she put on an extra one today to say sorry.  I would have much more proffered a verbal one though if it’s all the same by you.  This is not just a breakfast thing it’s every meal.  I find that I very very rarely get exactly what I ask for and this is after they have repeated it back to me too.  Would you accept this type of service if you were at a restaurant, or even at a dodgy greasy Joe’s for that matter?  I rather think like me you wouldn’t.  What is the difference really between that and this?  In some ways I have paid for this service by paying my taxes etc so I would like at least a half descent service please.

I know Penelope has been on the case this week and in fact she has even told the supervisor of the blog and asked her to read that before she comes to see me.  This was on Monday I believe it was and it’s now Thursday and seeing as I won’t be here this afternoon and I am due hopefully to go home tomorrow I doubt she will come now.  I would strongly suggest that she does mind you as if she doesn’t I will pursuing these matters very strongly when I get out and have a whole lot of time on my hands.  At least now she has a chance of easing the explosion.  In a lot of ways mind I have heard all the excuses in the past and don’t think for one minute she will come up with anything new.

At least I know that today’s lunch and supper will be nice.  That’s only because Judith is picking me up at lunchtime ad bringing me back later which will probably be around supper time, therefore lunch will be in Tesco’s on the way to Llandough and supper may well be a beefeater if I can convince Judith to stop at one, depending on time obviously, or failing that probably a Mc Donald’s or KFC or something equally as healthy.  Penelope I was only kidding really I will be a good boy and ask the slop stirrers to make me a nice lunch box to take with me, honestly I will…..

A Change Of Service!!

Well I guess things have changed around here this time.  What I mean by that is that I think because I have finally started to speak up a little it has been noticed and as a result I have actually got the level of attention and care etc as anyone else.  There has never been the issue of blame or lack of care or anything else, just because of being out of sight you do become out of mind whilst you’re locked away in this cell. All be it a deluxe one with en-suite bog.  Oh yeah I got my own armchair too and bright red bowl because I have been a good boy.  

I think in general one of my main flaws, of which I have many, is that I have always been too laid back and as a result you do then tend to disappear into the background.  What’s that saying? “He who shouts loudest gets heard”, or something like that anyway.  I think I must have some either Spanish blood or maybe more like Jamaican.  Spanish because of the siesta thing and Jamaican because of, well, have you ever seen a Jamaican person stressed out over anything??  It’s a case of pull up a chair, drink some Rum and chill out Maaaaaaaaaannnnnnnnn!!!  

I’ve had quite a few jobs in the past that have involved dealing with Mr or Mrs Public Person and have found that those that shout the loudest tend to wind me up so I would make them wait etc or not give them there share of my attention.  An example would be: working behind a bar.  Crowded with customers, you haven’t a clue who was next.  One of them is s reaming his head off complaining that he was next and there’s one stood there just waiting there turn.  I would head straight for the one who was quietly, patiently waiting.  As a result of this I tend to be this same type of person myself.  Judging by the reaction this time however I may well try and keep this new me going for a while if I can.  It is quite hard to do though as when you have behaved a certain way for years, hell, all my life, it is hard to suddenly change your ways, but well worth it though.

One of the little angels in here brought me in a Yoga book yesterday.  I have never thought of Yoga as being something I would do. But if you think about it it’s all about Relaxing, Breathing and Stretching all of which I have problems with.  It’s not too strenuous as in pulse racing stuff so that should not cause me problems with my heart and breathing either.  I had a look through yesterday and I am going to have a go today.  It can’t hurt no matter what so what have I got to lose. The only problem I can see in being in here doing it is that you never really get stretches of the day with no interruptions in order to do the relaxing sort of meditation bit.  I will just have to put up a do not disturb sign.  In saying that though a lot of the slop stirrers and dirt shifters can’t even speak English properly never mind read it so I don’t hold out much hope.

Before you all start worrying that I might be turning into a Lentil eating, Soya milk only Vegan, as I can set you straight.” ME GIVE UP T-BONE STEAKS?”. “YOU’RE HAVING A LAUGH MATE”.  Now I don’t have anything against Vegans at all its just that they have not come up with a Soya substitute that tastes like Steak and Bleeds as well, until then there’s no chance.  

“Hooray”.  My cyclosporine levels have come right up after having stopped drinking Kick in fact they are too high and have been reduced to 100mg twice a day.  This is about the only time I actually want things to go backwards, taking drugs.  Especially cyclosporine as it tends to make me sick at higher doses.  Steroids are another problem drug for me too.  They tend to cause water retention along with things like slowing down the skin repairing mechanism, which is why the sores are taking so long to heal up.  They are looking a whole lot better since they have been dressed daily and at this rate will be gone in about 2010.  I, along with the doctors I think are rather hoping that the cyclosporine might start to work properly, and help with the skin problems and the breathing etc now that its back to a decent level.  The motto to this tale is, “Do Not Drink Red Bull Or Anything Else Like It”.

The physio’s kept to there word and turned up twice yesterday.  In the morning I ended up doing some leg exercises and strength building stuff.  I can’t do the walk thing in the morning as there is only Leslie around and it takes two really.  One to pull me along and the other to give me a shift from behind when I slow down.  I did however manage to go for a walk later in the afternoon.  Again it was pretty hard work.  I did manage to get a little further each time compared to the last attempt but more importantly the recovery rate was a lot quicker, down to around 4 minutes.  This means at the moment that I can at least achieve one of my goals when I get home and that’s the walk to the kitchen, which is good news for all around I think.  I think I have invented a new diet plan you know.  It’s called “The John In Hospital Diet”.  Every time I come in Tara and Judith don’t eat half as much as when I am home cooking for them so they loose weight.  The other goal of trying to make it to the car is achievable although will take time I know.  The plan is to try and get me some community physio at home when I am discharged which will be useful.  

Okay then I’m going.  Wish me luck for tomorrow as I’m heading off to see the chest doc at Llandough hospital.  One good thing is that Judith is taking me there and bringing me back.  I’m sure if I speak to her nicely she will bring me back via a nice Steak House.   Oooppsss!!!  Penelope if you’re reading this I was only joking honestly I would never dream of doing that.  Noooo not liccle old me!!!  I will be straight back hopefully in time for the nightly slop trolley full of goodies.

See Ya!!

3 little things

Well I must say after all the recent event full days it was a welcome break to have nothing to really talk about today, never mind whinge and moan about.

About the only 3 things of any significance were that when the doctor came around to see her favourite patient, well I like to think she thinks of me like that although I doubt this is anywhere near the mark, she mentioned 2 things.  The first being that my Cyclosporine levels were back to where they would expect them to be, in fact probably slightly more than they would like.  So they have reduced the dosage which although is not much just 110mg from 125mg, it is a reduction and heading back away from the Sick Zone as I like to think of it.  The second was to say that she was a bit concerned that my blood salts were a little low too.  They are usually affected by taking things like Diuretic tablets etc.  She said that as I have I have been off these a few days now my levels should have started to normalise.  I can see one pretty big flaw I this and that is, I have been taking these tablets every day as no one told me they were to be stopped.  That might explain why then.  This is a problem that could have happened at any time I guess as I always Self Medicate when I come into Heath Towers.  Some of the nurses come in and go through the drug chart with me although a lot just come in and ask if I have taken them all and I just say yes and that’s it.  Apart from this the doctor explained that they were still trying to contact the Respiratory team at Llandough.  As I found out by looking at my calendar this morning I am actually due to go and see Dr Gelder at the clinic over there on Thursday this week.  What it looks like is going to happen is that I will try and get Judith to come in and take me over there and bring me back which will at least save me having to wait around for the efficient hospital transport and then it looks like it going home on Friday might be on the cards although as all the hassle I have had in the past I never bank on going home on a particular day or time etc  as anything can happen between now and then.

Okay then.  The third thing was that the physio came and subjected me to some mass lung abuse in the form of another marathon walking session and so close after the last time too, she really has a nasty streak in her.  I must add a little note saying that it was, in fact my idea ha ha ha!!  I managed to walk around the same distances as last time but also the first section from the bed out of the room to the corner I repeated on the return trip and not wheeled back as I was last time.  It felt a bit like, well you know when you got married and carried your darling new blushing bride or in the case of women were swept of your feet and carried over the threshold.  Alas in my case Judith carried me over the threshold ha ha ha!!  Well it was nothing like that.!!  I felt just as breathless doing it and also really knackered and in some pain from the muscles that were trying to plead with me to stop torturing them afterwards.  The physio though did point out the fact that my recovery rate was a lot better as in I managed to return my breathing rate back to a normal state in less time than the last and that I have managed to walk a little further this time which are both positive moves.  See there may yet be some hope for me after all.  I have tried to explain to them that there are a couple of things that I want to be able to do in some ways before I go back home.  Well these are the major ones anyhow.  They are, that I want to be able to walk comfortably around the house, all be it downstairs as I need to be realistic, and not expect to manage to get up the stairs quite yet although I have every intention of doing so at some time in the future.  This opens up a few options for me although the main one is to get cooking again which I love.  The second aim is to be able to walk to the car without collapsing half way because of lack of breath and exhaustion.

Things are heading in the right general direction although I know that this improvement will not be an overnight thing I guess I have to make do with small gains.  

There might be some sign of me going home maybe on Friday.  They want me to be seen by the chest team and as it happens I have an appointment booked with them on Thursday, isn’t that convenient?  Providing he gives the all clear or not will either mean go home, stay in Heath Towers for a while longer or even a fate worse than death and that’s a stay at Llandough Hospital.  I’m rather hoping that he will let me go home and just try the community physio approach and exercises I do myself and after one more night at Heath Towers I will heading off back home for some well deserved rest AND DECSENT FOOD!!!! On Friday.  This is the likely approach as he does seem to want to much to do with me and this way he doesn’t have to.

After saying I had nothing to write about it still blinking turns out to be a couple of pages long ha ha!!!  

I’m Off See Ya!!

They Spoilt It!!

Morning peeps.  I think you will be pleased to know that today’s blog may well be a short one as my Pic line is playing up, so they have put the drip through a pump which stops, causing an alarm to go off every time I bend my arm, so I am typing with one finger.

I’m in two minds as to what to write as it was both good and bad today.  Well I’ll try and give both sides.  Nothing, that is apart from the Heath Towers Express, happened in the morning so most of it was spent just watching the telly and snoozing.

Then lunch time the slop stirrer knocked on the door, “what do you want for Dinner”, she asked.  I so wanted to say “Something edible might make a change”, but I was very polite and just asked what delights were available.  After the endless list of about 5 things I decided on Roast Lamb, lots of Roast Parsnips, Green Beans and Gravy.  I just love roast parsnips and would be happy with a plate full of them with gravy.  She came back with this huge piled up plate full of exactly what I had asked for which is a change and it looked gorgeous too.  Well bugger me it was outstanding.  Lamb simply falling apart, parsnips perfectly roasted beans just cooked and not overly as usual.  Even the gravy was twice as thick as the usual slop they serve up and tasty too.  Well you see, it can be done right so why is it so hard for others to do the same??  I fell into my afternoon snooze with a feeling of hope for the future and a huge belly from all that food.

Well apart from being woken by the doctor It was pretty much an afternoon of chilling.  

All of a sudden a head poked around the door and asked “what do you want for supper”.  After being given the list which usually is 3 items plus Veg and Spuds etc one of which is always Boiled Ham, although what they mean by boiled ham is slaughter house floor sweepings. You know the stuff all nice and pink and shaped round and sold in packets of 6 or 8 and tastes of, well nothing at all really.  I opted for the Beef Lasagne. Just that, nothing else.  No chips because they are so dry and no mashed potatoes and gravy of all things.  They actually served that to me last week. Lasagne, Green Beans, Mash and Beef Gravy.  Not a combination made in heaven I think.  Well it arrived and again a double portion of Beef Lasagne and nothing else.  Well bugger me again.  They will have to stop this as that’s 2 bugger me’s in one day, that’s not healthy.  It was simply delicious.  Again very well cooked.

So all in all the food was outstanding today, apart from the toast in the morning which was cold and limp but that’s a permanent problem and one I usually can overcome by asking one of the nurses later in the morning for some, which is not ideal I know.  It gives me hope for the future that it can be done.

Well that was that.


Ohhhhhh Noooooo!!!!!!!!!!!

I waited and waited for my evening cuppa to arrive and also for my dirty dishes from supper too to be taken away.  Finally I rang the buzzer to see if they could tell me if she had been around.  “Yes” they said, “they came around ages ago”.   Well the buggers never came in her to ask me. See, they just had to go and spoil what was going to be an amazing day and blog too for that matter.  Now because of that, simply missing out a cuppa has changed it into yet another day when the slop stirrers have wound me up.  Why can’t they just complete a bloody simple task??  All this too when I know they have been warned by the supervisor to buck up.

This sort of service is just not acceptable.  Penelope popped her head around the door this morning to ask how things were over the weekend and when I told her she was not a happy bunny.  She is going to ask the Supervisor to come and speak to me later.  It was quite funny because as she was standing chatting to me Mary, (one of the 5 spice girls) popped her head in asking if I had been given fresh water this morning, which I hadn’t so today has already started off on the wrong foot.

Right then I better go take my drugs or else I’ll die.   Mmmmm that’s an interesting subject for a future blog, DRUGS vs DEATH.


See I told you it was only going to be a short one today.  And I lied Ha Ha!!!

See Ya!!

The Day After!!

Well I have to say that after all that has happened of late yesterday was a non event really.  Generally just chilling out because as you know this place stupidly grinds to a halt on the weekend so there is a distinct lack of Doctor Participation.  It is believed that the last sighting of these strange life forms was around 1979 but it also appeared the person responsible for the sighting was taking rather large doses of Morphine at the time which might have compromised her vision.


After the previous nights lack of sleep I was tired all day as you can imagine and in some ways was glad of the longer spells of being left alone.  I also felt generally sickly and by far off my food too, just as well I suppose, at least I don’t have to try and force down their swill.  I was a bit cheesed off though as I had arranged for my mother to fetch in some Liver, Bacon with gravy etc but sadly I had to text her and tell her not to bother as it would be a waste with me feeling like this.  Her and my dad turned up later on in the afternoon and she hadn’t got the text so they were armed with a nice hot food flask for me.  She explained that it was supposed to keep things warm for up to 8 hours so I decided to keep hold of it and maybe bit by bit I would at least have some of it during the rest of the day.  Judith turned before them too with the obligatory arm full of carrier bags of goodies of all descriptions.  She generally has to go to Tesco’s everyday to fulfil my requirements so to speak with, to be honest, food stuff which I really shouldn’t need if they supplied me as they are supposed to with good nutritious food here.  

I had stopped with the doctors consent for a change ha ha ha the Nebuliser that I was taking twice a day, just to see if it was that that was causing some of the wheezyness and I thought it might have been because my chest had settled a lot by mid morning and was no longer wheezy.  It more or less continued like this till probably around 7pm when the rattle re appeared and the coughing started with vengeance.  Why is it that it always seems to get worse of an evening no matter what I do to avoid it??  Sadly that was to stay for a number of hours, but in saying that the last time I can remember looking at the watch the time was 1am and the next time was at about 7am which is bloody good for me at the moment.  Laura came in this morning to nick some of my precious Red Gold and put up the first dose of today’s poison.

They have changed the dosage to 125mg twice a day of cyclosporine and as some of you early readers might remember the hassle I had with trying to get adequate anti sickness cover in cover.  Even when they had eventually sorted that out there seemed to be a certain dosage level that really made me feel dreadful.  I used to feel sick and giddy and it’s hard to explain exactly but I tend to try and explain it as a feeling of being filled with toxic nastiness, not at all pleasant believe me.  It was somewhere between 100 and 150mg’s so I remember.  Up until now I have only had this feeling a couple of times when it was just once a day now it is twice a day I have had a few occasions of these feeling and there in lies a problem.  You see without the cyclosporine I would be having no treatment at all now the PUVA or should I say Skin Burning treatment has stopped completely.  You know I am still suffering from lots of, well ulcers they are now but they started off as blisters that subsequently burst and then got infected from when they burnt my skin all those many months ago now.  They have started to cover them up and put on these iodine based patches which seem to be doing the trick.  The intention was in the beginning to treat the GVHD with both PUVA and eventually 250mg of Cyclosporine which I knew would probably cause problems with sickness etc but thought we would cross that bridge when we get there.  The fact the I am having problems already at half that dosage and no PUVA would indicate that a change of tactics is required.  Again throwing up more problems. What next? Etc etc.  I know a lot of approaches have been discussed along the way between the team but they have always had other problems such as the infections and breathing problems to try and sort out first and the GVHD has sort of moved further down the list of things to do.  A bit like when you get put on hold only to be told, “you are 28th in the queue, please hold” and after the usual dreadful attempt at Greensleaves or some other obscure tune your forced to listen too the voice comes back and says “you are 30th in the queue, please hold we do value your custom” Grrrrrrrrrrrrr!!!!!!!!!!!!  If you valued my opinion you would employ more people in the call centre to deal with problems.  Oh and while your at it get in the engineer cos your queue goes backwards not forwards.

I’ve had a few down days of late which happens sadly.  Usually I deal with them quite well and as you know I do have a wonderful councillor Sarah who helps me through these times. I can find at times in here though that it can take a bit longer to get through it.  I am surrounded by some lovely people who really do care and are only too willing to sit and chat and cheer me up etc but the same old not wanting to be a burden and stuff stops me from asking a lot of times.  The last few days were made a lot more positive because of a few people like Sally, Laura, Nutter Rachael, lorraine, yolanda and Penelope Pitstop of course, just because they have gone out of their way to spend some of their busy time to speak to me and help me get through it.  I really do appreciate it.  On the other hand I suppose there are also some people that just added to the problems in some way although a lot of it could have been made easier if the actual service etc was run better for example buying in food that was at least intended to be consumed by humans and not livestock for one.

Ah well dinner has just arrived so I better go and get stuck into a plateful of Roast Lamb, Roast Parsnips, Green Beans and what looks like lovely thick Gravy and Mint Sauce of course.  No spuds as they arealways inedible.  

So wish me luck!!

See Ya!!

p.s if the first mouthful is anything to go by this could well be the best meal I have ever ever had in here………  

down down

Well what a day this has turned out to be.  Really a case of ups and downs.

As usual I was up with the milkman and subjected to the usual abuse which is commonly known as the Heath Towers Express.  Al started out quite well apart from being a bit tired which is not surprising due to my lack of sleep, I felt fairly good.  My wheezyness had all but gone which is a good sign and was looking forward to day of nothing much really.

The nurse had mentioned that the doctors had wanted me to start to taking my Cyclosporine via IV and not as I have been orally.  They had talked about my Cyclosporine levels in my blood being a bit on the low side yesterday when the Doctors came a visiting but had said nothing about changing to IV.  They seem to think that my chosen flavour of drink I use might be causing the low readings and had asked me to try and stop it for a couple of days just to see.  Although I was a bit gutted as I really do like this drink which is a Tesco’s version of Red Bull I would give it a go.   There is a thing with grapefruit that really effects it I know and the labelling is a bit vague as to whether there is some or not in it as well as the amount of caffeine and taurine probably does help either.  Well after taking a level this morning it appears that the level is on the way up which indicates that the drink was the culprit after all.  They will leave me on oral medication for now and see how it goes.  I’m not sure whether it was just the count that was the problem and also whether the Cyclosporine’s actual effectiveness was affected meaning it wasn’t doing its job.

I had a visit from Fav Cous Jacky and Jessica too which was a welcome surprise.  She came bearing gifts too in the form of a nice Coffee Latte from the concourse which was truly delicious.  We had a good old whinge about the Heath Service etc etc as she has sadly like myself had a lot to do with them due to various Illnesses and conditions etc.  it seems like every time I see Jessica she is about 5 years older.  She’s a young lady now.    God where has my life gone????????????  Shortly afterwards it was Judith’s turn and she brought in Tara and Luke (Her Boyfriend) only because they wanted a lift into Cardiff Town Centre though!!!  She came bearing more gifts too in the form of lovely fresh prawns with seafood sauce and some replenishments in the grape and nuts department.

I had forgotten to be honest with you to take my Celestin Nebuliser in the morning so I decided when Judith had gone I would take it then.  Everything was fine for a short while then the unmistakable noise of a distant rattle could be heard.  It started off real slowly.  But within about 2 hours I was auditioning for Cough Of The Year and would have won hands down.  I was thinking to myself that I hope this doesn’t last nut I am not that lucky.  It’s now 3.05am and I am sat up writing this still coughing badly so much that it hurts all my body due to the physical straining ect.  I have tried everything to stop it.  Heavy Breathing exercises laying/sitting in various positions, cough medications, hot drinks, cold drinks, drugs etc etc all with no success.  As usual all this coughing is making me feel sicky again which I absolutely hate.  It has got me down again and as usual once my chest gets worse along come all the negative thought’s and I tend to fall apart at the seems.  I have been having a good old chat with the lovely Laura and the equally lovely if not Gobby pocket rocket, Rachel.  We were generally chatting about like as we know it and they have done a great job of cheering me up and convincing me I can get through this etc etc.  They really have helped a lot over the last few days and I am extremely grateful for this.  I know that I have a lot of people like these lovely Florence nightingales rooting for me and willing to help me in every way they can and they all just seem to help without me even saying anything although I know I have to start to ask when I do need things.  This is something as I have mentioned lots and lots of timed on here that I have always found hard to do.  It’s like a feeling of admitting I have become less independent which I also know is bloody stupid.

I hope to be able to start to do something about it as the way I have been as in speaking out about problems whilst I have been in here this time and seeing the results of actually doing this maybe has been a good start at least.  I just have to keep it up now.

I thought I would just say a quick hiya to the equally delicious and delectable Lorraine who was looking after me this morning and for the wonderful service she gave as per usual. I especially liked the touch of bringing into the room 4 masks for the student doctors and the registrar when they came in.  I totally agree with her as the doctors never wear them at all apart from very occasionally Merlin does.  Good on you girl I thought.  She is a star!!  I would like to say hello to the nurse who looked after me this afternoon but I actually saw her twice. First time was after she had been on duty about 3 hours to say hi then about 3.5 hours later to give me a tablet and as she is either new or a bank nurse etc I couldn’t tell you her name or what she looked like as at least she was wearing a mask so I couldn’t see her face at all.

I tell you one thing I hadn’t realised before the last few weeks of punishment and that’s how much I have began to rely a lot on lip reading to supplement my hearing loss as well as the hearing aids.  With all the faces covered up it can be very hard to understand what people are saying.  I tend to not wear the hearing aids much in here as the noise from the 2 phones right outside my door is deafening with them on.

Right that’s enough of that for one day see you all tomorrow.

See Ya!!

think first

I guess it pays to get your facts right as even I am guilty at times of just flying off the handle at things and situations etc which are usually passed on to me third hand.  This was one of them….

As you all know the problems I’ve had in the dietary department since being in Heath Towers this time and I was, because I was so enraged last night , going to write yet another condemning blog today about the inedible slop they serve up here and this time it was cocked fresh for me and brought straight from the oven to me, no sitting around on the trolley for ages.

I had discussed what was available for the evening meal with the slop stirrer that was on duty in the afternoon and we came up with, Beef Burger, Peas, Mash and Gravy.  The Beef burgers was a good idea as everyone can cook them, can’t they??  And the rest would hopefully be straight forward enough.  

Well as promised she turned up at the arranged time on 4.45pm, which is the time she usually starts her rounds although she starts the other end of the ward and therefore gets to me about 5.30ish.  By which time everything in sight is usually cooked to the Charcoal Stage.

Okay then first thoughts were, well its burger, mash and gravy no peas sorry run out.  Here goes I thought as I dived in and headed straight for the Burger because after all that was the main ingredient that had been cooked especially for me.

YUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUK!!

If they thought that this horrible attempt at being a Burger was acceptable then there is a real serious problem.  In its favour though it was warm but that is the only thing that was right.  It was paper thin for a start which is a sure sign that it will probably always be overcooked by this lot.  Then there is the redeeming factor that IT DOESN’T EVEN TASTE LIKE BEEF!!  It was bone dry, tasted of cardboard and wood shavings mixed together with some obscure bean paste so that it can be shaped.  It was absolutely disgusting and I would not have even fed it to my dog, if I had one.  It was so bad I got in one of the nurses to taste it with me and she could not even stomach swallowing it which sadly I did.  I hope I am not infected with some rare cardboard bug now because look out.

I would never have the cheek to serve this up as fit for human consumption not to mention the probable total lack of nutrients that you need from food.

Well then I guess it’s a packet of crisps and some nuts and grapes for a change although it is happening more often than I would like it.  There are probably more calories in a packet of crisps than there would be in a whole days meals served here and that’s not right surely.  Oh yeah I’ve heard the dulcet tines of the nurses walking around the ward offering out Build-Up drinks which although I will sing their praises as they can be very beneficial and have been a god send to me along the way but surely it should not be a failsafe back up for a useless menu and not good food etc.  Quite often when the nurse or slop stirrer comes in to collect my still full plate of cold whatever it is the next words are do you want me to get you a build up?? NOOOOOOO I WANT TO BE FED DESCENT FOOD!!!  Surely it’s not much to ask for??

Okay then having said all that the twist in the tail is that this morning when the slop stirrer came in with my early morning cuppa, she asked how the burgers were as it was her that I had discussed much earlier in the day what the choices were for tea time and she told me that one of her colleagues will be around to find out my choice later.  I went on to tell her all about I being horrible and tasting like cardboard etc etc and she turned around and said,”Oh they must have been Quorn then”!!!!!!!!!!!!!!!!!!

No wonder they didn’t taste of beef. Ha Ha Ha!!

In a way though nothing changes because no matter what they were, they were not edible at all.  I have tasted Quorn lots of times in the past and in fact I can remember cooking some Quorn Burgers myself at a Bar-B-Que some time ago and they actually taste really nice.  They seem to be vastly over priced for what they are but then isn’t everything these days???

This is one reason, as I started out to say, not to fly off the handle unless you know all the facts although I guess in this case my attitude towards it are the same even after knowing the whole story.

I am very beginning to see that the whole catering side of your stay here is going rapidly downhill and I know by the till receipts that my Wife and my Mother and friends etc are showing me the cost of bringing in food to make up for the inadequate muck here is not cheap and in fact I would probably feed 3 for the price they fork out daily.

I will have to try and convince a top TV Chef to take up the Hospital Challenge such as Jamie Oliver did with the schools, but in saying that I think I am right in saying that both Egon Ronay and Gross Lloydman…sorry I mean Lloyd Grossman have both had a go at trying to sort out Health Service Catering with little or no success.

Seriously I think I will try and look into this a bit more deeply when I finally get out of here and maybe find out there is something I can do to try and sort out the problem.  After all I will no doubt be back in again soon so will have to go through it all again anyhow.

Right off for a little snooze.

See Ya!!

The Marathon!!

What a day yesterday turned out to be.  It started off quite good breathing wise and over the rest of the day got worse and worse AND WORSE!!!!

They have changed the Coloymycin as I have said to Tobramycin and yesterday was the first dose.  Up till this time my breathing was fine but no sooner had I taken the required 300mg my chest became very wheezy.  Later when the doctor came around I mentioned it to her and we agreed that I should give it another try later and see if it is the cause and not something else.  If it proves to be this causing the wheeziness then I will go back on the Colomycin.  She also recommended that I try and take a salbutamol nebuliser too, to maybe try and shift some of the muck she could hear in the bottom of my lungs.  I have as I explained to her, taken these a number of times in the past especially when under Dr Gelder the Lung guy as they seem to be mandatory for every single patient in his care and mainly without no success at all apart from a lot of annoying coughing.  So by now I think you have the picture I am coughing a fair bit.  

To top it all along come my favourite favourite physio’s to take me on this long promised walk up the corridor.  I did have the choice as to whether I wanted to do it or just a few gentle leg exercises, but by now my coughing had seemed to ease a bit and besides that I wanted to know really how far I am able to walk now I have been in here 2 weeks and had all this expert attention and treatments.

If I said it was pretty dismal that would be the understatement of the century.  The stage was set for my grand marathon dash.  The corridor was lined with hundreds of people waving flags and banners mostly saying,”What are you doing you idiot”?  The route was planned in advance to avoid any wrong turns on the way.  It was out through the door past the nurse station, which indecently looks nothing like a station!!  Sharp right turn trying to avoid the many obstacles that always seem to congregate in the corridors here and then a straight run into the finish line in front of the official time keeper Cath whom had kindly accepted a healthy bribe from me earlier to ensure a good result.  There was a Zimmer frame in front of me with one physio standing next to me and another physio behind me with a perfect view of my athletic bum, pushing a commode in case I need to sit down or use it for its intended purpose.  Well ????? Could have done with one at the Olympics!!!!

Okay tension building now, butterflies in my stomach, dinner trying its best to pay my mouth another flying visit, here we go.  On your marks……… Get set……..  Go…. And we’re off out through the door at lightning (Snail) speed, probably not even registering as movement at all on the speed camera aimed at me.   Oh yes didn’t I tell you they have installed Speed Cameras on the ward now???  I think it’s more to see whether the dirt shifters and slop stirrers do actually move and are not rooted to the spot as it appears.  Right back to the marathon.  I was starting to build up a rhythm now, slow and steady, my heart was beginning to race, sweat was escaping from any available pore it could find, and my breathing was beginning to get weaker.  All this and I had just passed the first marker at 1.5 metres from the bed, not bad I thought!!  After mopping my brow the physio continued to shout encouragement, I couldn’t quite work out at the time what she meant by continually shouting “Encouragement, Encouragement”??  Right I was rapidly reaching the only turn in the course some 3 metres from the bedroom.  A sharp right turn not unlike Beaches Brook in the Grand National, but not on grass and there’s no hurdle to go over and it turns left and I’m turning right,  in fact it’s nothing like Beaches Brook forget I ever mentioned it.  Well the corner was upon me and I managed to cut it slightly so as to save a bit of energy, narrowly missing an abandoned little Malawi boy probably around 18 mths or so old who says his mother had sent him down the shop for a packet of fags and pick up a brother or sister while your at it..  I was beginning to really struggle by now and decided that I really did have to stop if I fancied living a little longer so the Commode was placed and I pretty much collapsed in a heap on top of it.  I was struggling to get any breath in at all and my pulse rate must have been through the roof which was just making matters worse.  As I rarely get out of the room when I am in here lots of people were coming up to me asking if I’m fine and can they do anything for me.  Well do I look fine and please please please don’t wait for a response top your questions as I am finding it hard enough to just breathe so you will excuse me if I use up my available oxygen levels to stay alive and not answer you Ha Ha Ha!!!  I was thinking to myself at the time that maybe I had pushed it a bit too far this time but thankfully after around 5 or 10 mins I managed to get back to a decent state.  With that I was up and off again hurtling towards the finish line.  The only thing I could see was a vision in my head of Cath standing there with a wad a cash in her hand laughing at me as she didn’t need to lie after all as I never make it to the finish line.  Not on your life I made it just before collapsing in a heap again in the commode puffing and panting like there was no tomorrow.  The crowd were all cheering, for the streaker that had run past not me.  Again after 5 or 10 minutes my breathing was back to normal and my heart had slowed dramatically too and they pushed me back the 15 metres or so to my bed.  By the time I got there my coughing had started again not that I was surprised with this.

After a quick check to see if I was okay the physio’s were off quite pleased with how far I had made it.  I wasn’t as impressed I’m sad to say.  Up till a couple of weeks ago I would have easily made it the whole way through without stopping although I would have been in the same mess at the end as I was today, so it just proved to me that I am far from going home at this rate.

The coughing seemed to gradually get worse almost immediately after doing this marathon. It started with the usual rattle in the throat then slowly progressed to being a rattle deeper down in my lung until eventually it was pretty constant uncontrollable heavy cough.  I had a feeling of a constant tickle in my throat making things worse.  I haven’t coughed like this for a long long time and it was making breathing very difficult at times.  At this rate I would not be surprised if I was to break a rib or something and was also expecting to have a couple of blood shot eyes.  It was actually quite scary as when you are struggling to take a breath and can’t do it you start to panic which just makes things worse.  Unfortunately this carried on all night pretty much so by this morning I am absolutely knackered.  My whole chest and back are quite painful and tender due to the muscles having a right old work out.  The only position I found after about 7 hours of trying that the rattling eased a little is to sit up bolt upright which I find to do let alone try and sleep in this position.

Thankfully for the minute the rattling has eased although it hasn’t gone as such.  It was probably down to all of the above as to what has caused this change although pushing a bit too hard is my idea as to what was the real cause.

I am feeling a little sickly today too which I’m not surprised at all due to the effect of constantly coughing on my stomach etc.  I managed to keep things down all night although it was touch and go at times let me tell you!!

I think I will give physio a miss for today maybe wise.  I’m waiting for Merlin to come around to break the news to him gently that he is going to be stuck with me for a little while yet, but in saying that I think he is off next week anyway so he will not have the pleasure of my company for a whole week.   LUCKY BUGGER!!!!!


See Ya!!

Another Day!!

Poor old, or should I say young, nubile, athletic…is that enough creeping???, Penelope Pitstop returned from her foreign frolics to be faced with her worst nightmare, ME!!!!!!!! Ha ha ha.  She popped her head through the door first thing in the morning to say Hi and let me know that she had been reading my blog before she came in so was thankfully aware of the problems I have had the last couple of weeks.  I’m surprised she came in actually as I would have probably phoned in sick until I had gone home.  The woman’s made of sterner stuff than me obviously.  

After the Heath Towers Express blasted through with its usual reckless abandonment I set about trying to get a few minutes sleep but alas it is just never going to be possible here is it?  I’m going to sleep for a fortnight when I get home to catch up so I’m pre warning you all my phone will be off and I won’t be blogging for 2 weeks when I get out..

Ah yes Penelope… where do we start then???  We had a good long natter about things like the Slop stirrers leaving the dishes and missing the cuppas and also things like serving Lasagne with Swede and Gravy!!!!!!!!!!  Please I ask you….my taste buds have been cleverly honed over the years due to my culinary expertise and I come in here for 2 weeks and their knackered by the pig swill they try and serve up as humanly edible.  Take yesterday for example. The fact that they have to wear masks when they come in my room means that they leave me till last to be fed.  By the time they got to me the choice was, Boiled Ham which is actually that processed stuff made of all the nasty bits shaped into neat round circles or Baked Potato, which is boiled then put in the oven for 5 mins making it nice and juicy or should I say Runny inside.  I could have either of these with the obligatory Swede, Mash and Gravy.  Mamma that sounds nice, Baked Potato, Swede, Mash and Gravy Yummy Yummy!!!!  I hasten to add I declined the generous offer fairly quickly and thanked god that I had asked my mum to bring me in a nice warm pie just a little bit earlier so that filled the gap along with a flask full of gorgeous roasted Veg she had made as a surprise.  She spoils me I know but I would think it would be quite hard not to spoil such an angel like me!!!!

We also chatted about the dirt shifters and the nurse who believes she is more knowledgeable than the doctors and decides herself when to give dressings and medications etc.  also things like refusing to have my bed made and she did explain that they had had a complaint regarding the making of beds recently so in a way the nurse was right that it needs to be recorded but not in the manner it was written and maybe declined would be more appropriate than refused which I agree.  I think her poor head must have been banging when she left to try and sort out all the other problems we had discussed.  

Later she returned saying that she had talked to the slop stirrer supervisor and had made my point quite clearly that the service was unacceptable in fact my words were “IT WAS CRAP!!!!”  I think her version might have been a bit more diplomatic though.  They have promised to look into the problems and try and resolve the things they can like arranging the staff rota’s more effectively so that there is always a regular slop stirrer on and not all new comers and see what they can do with the food situation.  I can tell them what to do with their food!!!!!  

All in all Penelope did a great job as usual and ensured me she will continue to try and stop all things happening in the future not just to me but to all patients.  Let’s just hope I don’t have another couple of them Red Carpet days as I don’t think I will be able to cope.

Health wise….. The physio’s paid me a visit as usual early afternoon and decided after listening to my rattly chest that it would be a good idea to do some chest percussions which involves me lying on one side then the other and the physio using cupped hand and through a towel beating up and down my rib cage at the back quite hard.  The idea is the resonance from the beating releases any phlegm that may be lurking in my lungs.  It does work at times although sometimes I find if its way down in the bottom of my lungs it just won’t come up.  Also I find it often comes up a bit later on when I have relaxed a bit.  The whole process makes you feel quite wheezy and knackered afterwards for quite a while.  I suppose they have disturbed whatever secretions there were there and they are sort of loose throughout the tubes.  They also have changed my regular nebuliser that I have taken for what must be nearly 2 years or so now as it might not be as effective as it once was, not that it was ever that effective anyhow as I still used to come in with pseudomonas infections as you all know and that was the only bug that this was supposed to protect me from.  This new one called Tobramycin is very similar apart from the fact it is almost 4 times the amount I used to take so takes around 45 mins to go through and it so far has made me very wheezy after taking it.  It’s a bit of a pain to make up too as they only have small vials 80mg’s and just to be awkward I have to take 300 mg’s and not the easy thing like taking 320 mg’s to use up all the last vial. In saying that though I will have to put up with it for another 10 minutes or so if they do so 300 mg’s is fine by me.  They have done another scan of my heart and a chest x-ray just to see if things have changed but it seems not although I am waiting now for the Merlin’s daily entourage to arrive bang on lunch time as usual so will maybe let you know more tomorrow.

I have decided too that am going to start to charge for my Advice Helpline from now on as it seems that yesterday there was a constant queue outside my door waiting to either pick my culinary brains or my computer knowledge.  No one really interested I how I am just things like “how do you make a nice shepherds pie and how to slow cook Beef shins quicker”.  Then things like “what’s the best to buy a laptop or a home pc” etc etc etc

See Ya!!