Cant Get No Sleep!!

Well what do you know? The bloody dirt shifters have decided to play up as well just for the hell of it.  They did not come in and clean my room or even change the bin bag yesterday.  I recon they have decided that they are missing out on some valuable free publicity on here as everyone else have managed to get it.  Well I don’t want to be the one to disappoint them so here goes.  “Dirt Shifters”, YOU ARE CRAP AND USELESS”. In fact I would go as far as to say that my room is probably hygienically cleaner today than it would have been if you had cleaned it yesterday.  I don’t think there is anyone else that hasn’t caused me any grief left, apart from the porters, oh, and the Pharmacy Department and I know the plan is to maybe turf me out into the wild evil world later in the week possibly, I will definitely be having dealings with Pharmacy and I’m sure they will be up to their usual incompetent and sluggish selves.  I better start asking for my take home drugs now (Tuesday) and they maybe ready by the weekend.  I could safely say that I could write that days blog accurately already as it never fails to amaze me at how many incompetent people are involved and how slow the various cogs work in such an act that is repeated loads of times a day on every ward in the hospital.  It is not unknown for me to be told at 9am ish that I can go home and still be waiting around till about 8pm or even later before I could actually go, mainly because of the drugs.  Even when I have known the day before and got the doctors to fill in all relevant paperwork and Pharmacy having it the DAY BEFORE!! I am still here till about 8pm the next day, its bloody ridiculous!!!!

Right, I started to go off a bit then and to be honest I was stealing my thunder from Fridays blog or whatever day it is that I get these shackles taken off.  A bit like shooting myself in the foot which I am good at.

I know I have brought up this subject, well you could say a few HUNDRED times but it is generally getting on my nerves at the moment.  It’s the old matter of Lack Of Sleep.  I don’t know about you but I do try, although quite unsuccessfully for a number of weeks now at least, to get about 8 hours sleep and that started me thinking.  Say it takes you about 15-20 minutes to actually get to sleep when your head hits the pillow you need a spell of no disturbance for 8hours and 20 minutes.  The routine in here, and that does not include any treatments that are needed, is that the Ob’s as they call them which are Blood Pressure\ Pulse\ Temp check etc are due to be done at 10pm and then again at 6am so you could in effect get nearly 8 hours but not the 20 minutes per night.  Well that is the theory and is strongly based on the idea that everything runs smoothly and on time.

NOW LET ME GIVE YOU THE REAL SCOOP!!!!

The nursing assistant who is on duty for the night waits till about 11.30, just as you are starting to  nod off, to come in to do your Ob’s.  This usually involves turning on every available light which is just what your eyes needed and the machines are not the quietest in the world.  After your 10 minutes of attention they are off, usually leaving the lights on.  Then it’s the wait for the other nurse to turn up with your dose of antibiotics and if not your drugs that are due (unless like me you take your own).  This can be anytime from 10pm to about 1am usually depending on how busy they are.  As a rule they usually come into me at around12.30am.  The chosen poison at the moment is given over about an hour then you either wait for the nurse to look through the window to see if it has finished usually about 3 hours later or do as I do and press the buzzer to get them to unhook you.  So there we are already it is now about 1am and finally you are allowed to go to sleep.  Yeah Right!!!!  By now due to the attention and the lights going on full blast etc etc I am usually wide awake and if I am lucky I might get to sleep in about an hour so that takes me to around 2am.  Okay, are you keeping up so far????          Good!!!          Right then I have been asleep now since 2am and am just getting to the point in my dream where I climb up the tower, well stumble really because the dragon bit off one of my legs earlier in the dream, swine!! To rescue Princess Judith from her wicked, evil husband when you hear the dulcet tones of the night nurse saying “I’ve come to take your Ob’s love”.      Grrrrrrrrrrrrr!!!!!!!!!!   A quick glance of the watch and pretty much always it says 6am meaning I have had the grand total of 4 hours.  The same procedure is followed ALL LIGHTS ON!!!  NOISY BLOODY MACHINE!!! Etc etc I think the general idea is to wake you up so you don’t miss the rest of the Heath Towers Express that is to follow and in that case they definitely do their job properly.  Then usually not far behind them is the next person in this daily pantomime the nurse to give you your antibiotics, which again just adds towards the general aim of waking you up.  Then along come the slop stirrers and not just once either.  They actually come around 3 BLOODY TIMES!!! In about 2-3 hours.  First it’s to replace the water jug and cup which as I tell every one of them, “don’t bother as I don’t drink the stuff I prefer my own juices and stuff”, but they never listen, even the ones who I have known for nearly 3 years.  Then comes the Tea Trolley trundling through the ward.  Believe me when I say that this thing's really noisy.  Even with my hearing the way it is I can still hear this thing coming for miles.  The head pops around the door, “Cup Of Tea”??  no I want a coffee with 1 sugar which I have been having from you for the last 3 blinking years, surely you have the message now that I only ever drink Coffee with 1 sugar???  After a short wait which is usually just about long enough for the slop stirrer to burn the porridge and over boil the eggs in readiness, oh  yes, and make sure they grill all the toast first so it is just slightly warmer than it would have been if it had come straight out of the freezer, but not as warm as the fridge.  I think the idea with the toast is to try and serve it at the same temperature as the butter which is always nice and chilled.  Quite often I ask for some toast now but I must say that the nurses are good in the fact that they don’t mind making me some a bit later on in the morning as quite often I can’t face food for a couple of hours first thing in the morning.  The other trick I have found which does work sometimes although it did backfire yesterday is that I ask for a piece of Brown Toast  which as a rule they  don’t do, they usually make up a load of white toast.  As a result they usually have to go off and make some fresh so it’s at least on the warm side of cold for a change.

Usually by now then you are well and truly awake after having around 4 hours of sleep and not the 8 that you need or at least want.  I suppose over a few days this doesn’t make a lot of difference but if like me you are usually in for a couple of weeks I probably loose the equivalent of 2 or 3 days worth of sleep which surely can’t be good for your general recovery, can it??  As I have pointed out numerous times in the past once the Train starts it has to run it’s course so you try and get a little snooze in when you can during the day and evening but every expert in these matters will tell you that the benefits of this are minimal if not none because it is not the correct type of sleep.  It does help sometimes though all be it psychological I suppose.

Is there an answer to this burning issue I ask myself???  Well I guess there are things which would help in a small way but I guess the bottom line will always be MONEY!!!!  As the nurses all ready rushed off their feet would need additional colleagues employed to ease the burden and as we both know that just won’t happen.  So we are stuck with the status quo!!

Right.  I seem to have gotten the bug of writing again whilst being in here as my blogs seem to be endless and not the small ones I did whilst I was home.  Maybe I will try and dig out a copy of my book and continue on writing where I finished off.  That way I might actually get to finish it one day!!

See Ya!!

Drugs!!

Do you know what?  I must be really really dumb.  I don’t blame you all for agreeing with me either.  How many times have I tempted fate and said in the past that I feel a little better today only to end up shortly afterwards feeling worse again. Well yesterday was one of them days.  As I said I think that things might be heading in the generally good direction and I couldn’t remember my chest being the least wheezy the day before.  No sooner had I Emailed in the blog for you to look at my chest decided to play up again and the dreaded Death Rattle re appeared.  I tried all the usual things to clear it, various Nebuliser’s and breathing exercises and sitting or lying in particular positions which sometimes works but all to no avail.  In fact I finally fell off to sleep at what must have been around 12.30am still annoyingly rattling away.  It’s a weird noise too as if the light s are off and its dark enough nurses have quite often come in, in the morning saying “you were snoring your head off last night”, where in fact it was the wheezing that they had heard and that beneath those shut eyes was a man being slowly driven mad by the constant torture, Hell, even the Japanese Prisoners of War weren’t tortured 24 hours a day.  Ha Ha, I just had a thought, with all the Roast Chicken they seem to dish out more regular than anything else on the ward, I should start to make them little model ships etc that the POW’s used to make.   Give me something to do I guess.  

On the earlier point of saying I felt well only to feel dreadful later on.  I remember when I had not been long diagnosed and was in the middle of the Chemo regime.  I was given a drug, I think it was Daunarubicin or something like that anyhow, one of the Chemo’s they were giving me anyhow.  Well it was only a Bolus injection so about 10 mins or so after having it I went off for a wander downstairs, well to tell the truth I actually went down for a fag because I was smoker back then although have now been nicotine free for about 16 months I think now, although I have never kept track of it at all.  I remember feeling quite well actually and even might go as far as saying that the injection had made me feel a little better which I remember thinking might be a good thing.  I settled down in the Gazebo for a smoke and decided to give Judith a ring for a chat.  I was saying to her how well I felt and she was pleased as I was suffering a lot back then with sickness which sadly has always been a problem with me.  After a while and probably 3 fags which was the usual thing and all within about 5 minutes I headed off back up to the ward.  No sooner had I done this that I started to feel really unwell.  It started with an over all feeling of being very hot, also extremely queasy and quite dizzy too.  Well unfortunately the ward was a long way away and I thought there is no way I was going to make it back in one piece, not without probably leaving a trail to follow behind me from both ends too as the back one was starting to rumble with its signs of dissatisfaction of being made to carry around this toxic cocktail.  Luckily enough for me one of the porters John was walking past and stopped to ask if I was okay.  They had all got to know me by then as they seemed to be permanently taking me somewhere or other to be poked and prodded or filmed in one way or another always stopped for a chat when they saw me.  Thankfully he was heading in my direction in fact he was going to the ward above mine so told me to jump in the wheelchair and he put on the turbo boosters and we were back to the safety of the ward in a matter of seconds.  Just as well actually as my first port of call was not the bed, but the toilet and I just managed to get there on time thankfully.  

I soon learnt that these drugs are not to be taken likely and are quite potent concoctions that have some quite nasty side effects.  I think it was probably about this time that I started to ask for the Written Patient Information or failing that the BMA book before, most of the time, they were going to give me a new drug of some sort.  At least that way you can be prepared of any that you might need to look out for because to be honest unless you ask for such things the general practice is to not give it out.  This goes for all your medications that are dished out to you.  They arrive in this little plastic pot which is sometimes wet in the bottom making the tablets that are inside taste foul as they have started to dissolve.  You’re not told, well most of the time you are not, whether you need to take them with food or on an empty stomach.  With milk or water.  Not with other medications etc…  I actually had one tablet once that I think was some kind of calcium based drug.  Then instructions were something like.  Taken strictly with 250ml of water Absolutely not with milk.  Not with any other medications.  1 hour before food. Patient must sit up and not lie down for 45 minutes after taking it.  There was actually a list of 4 drugs which must not be taken whilst on this medication and I was on all 4 of them.  They actually gave me this medication with my breakfast about 15 minutes after taking the rest of my pills, offered me a glass of milk to take it with and when I told her I was really tired as I hadn’t slept too well she said “ okay love I will close the blinds on the door and tell all the staff to stay out for a couple of hours and you lay down and get some sleep”  I must add that this was not at Heath Towers but at the place I like to think of as Colditz, Llandough Hospital.  I really hate that place and will fight tooth and nail not to go there if I can help it but sadly the chest team are based there and they have their main ward there too.

I guess this along with a few other mistakes with medications etc along the way is why I now self medicate whenever I come in.  They are very understanding on C1 and allow me to do it with no questions apart from the controlled drugs I may be on at the time which is only understandable.  The only time there has been any problems is when the doctors have decided to change any of my medications and they haven’t told me which is quite rare I must add but does happen. I would do my own IV’s if I could as I am an expert at them now having had so many over the years and the fact that I’m a nosey bugger and want to know the ins and out of everything so are always asking questions.

Right then I’m off.  Is it me or do my blogs seem to have rather long since I come in here.  Sorry.

I wish they wouldn’t do that, just open the door slightly and start talking to me as I never have my hearing aids in and rely a bit I supposed on lip reading to see what they are saying.  A bit hard through a lump of wood


I think Penelope is back this week too I hope she is ready for me as I think there might be a few things I have to say to her.  Sorry in advance Penelope dearest.


See Ya!!
     

The Weekend!!

Well the weekend is well and truly here again and as you all know this place turns into a ghost town.  I wish though that someone would tell the driver of the Heath Towers Express that he needn’t turn up so god damn early on the weekend as he’s here at 6am on the dot still, the same as during the week.  There really is no need.  I’ve found over the time I have had the Pleasure?? Of coming back and forth here on the ward that quite a number of nurses like to do a double shift as in working all day into the late evening which I guess could make the working week a little shorter or in fact get in a shift of overtime.  I suppose this reflects the fact that it really is quiet here Saturday and Sunday as there are not many brave enough or more like it, stupid enough to do a double shift on a week day, they would need a week off to get over it ha ha.

I did actually end up missing my morning coffee yesterday as there wasn’t any here but I managed to get an extra couple during the day and night to make up for it.  Apart from that nothing else went wrong yesterday so I guess I don’t have much to rant about, but I wouldn’t be surprised that if I dig deep enough I will come up with something.

I have to laugh.  Each time I come in for some much needed treatment I always bring the essentials in with me like, The Laptop, The Digital TV Card and Aerial, My Pillow and sometimes My Quilt including Bob The Builder Cover, oh and things like PJ’s and Toiletries if there’s room.  There is like this routine I suppose I have done so many times now it’s become automatic.  It’s always set up the laptop first including the essential TV Card then chill out and worry about the rest later in the week Ha Ha!!  I have been in so many times now I know exactly where to place the Aerial for the TV on the blinds and at what height the blinds need to be to get the best signal.  This goes for both the single rooms and also for both 4 bedders.  Every time I come in there are always a number of people that are fascinated that I can watch Digital TV Freeview through the laptop whilst I’m here and I spend countless hours demonstrating it etc.  What I should do is buy a few and bring them in with me because I would sell out every time and I would be worth a packet by now.  I recon I could have shifted about 50 or so already as they all say that they are going to go and get one as they are so impressed with it and to be honest I am overwhelmed by it.  The quality and usability, never mind the price are unbelievable and to me it has been a godsend and has probably saved me hundreds if not thousands of pounds that I would have spent to watch the tiny 4 inch bedside TV with its 8 channels at £1.50 a day.  I think Merlin has been talking about getting one for about a year now, I think I might just go and buy him one for Christmas just so that he doesn’t keep expecting the sales pitch every time he sees me.

Well as far as the health is concerned I can actually say I feel slightly better.  I still have a bit of a sore throat to go along with the usual breathing problems and the fact that I am in pieces and struggling to breathe just getting up and walking the 2 metres to the ensuite toilet.  I didn’t notice till just now that I can’t actually remember my chest being wheezy at all yesterday which is an extremely extreemely rare occurrence.  I’ve been on this new anti-biotic for just 2 days and already it seems to have had some effect or it could actually be the Immunoglobulin that’s boosted my immune system enough to be able to fight that much harder.  I don’t care really only that it is getting better that’s all.

Hopefully this is the shape of things to come.  I know the physio’s have plans to get me walking up and down the ward next week so I had better conserve all my energy I readiness.

You’ll laugh at this…..

The slop stirrer who had sparked the whole argument earlier in the week about leaving plates hanging around all day etc is on this morning and she has just come in to collect the dishes from breakfast and turned around and said I heard you have been having problems with people not collecting your plates etc.  The problem is there are a lot of new staff on at the moment and they don’t know what to do not that it is an excuse.  You’ll be okay now as me and Sue (another Regular who spoils me rotten, she is a sweetie) are on so there won’t be any problems. HA HA HA HA!!!!!!!!

See Ya!!

Royal Treatment!!

Well what a refreshing change after the pretty damn poor service I have had the last the few days.  After my outburst at the nurse involved with not doing things like getting my hot pack and putting on the dressings that had been hanging around for hours and also for starting the Immunoglobulin so late causing me as you know a sleepless night, things seemed to change drastically today.

Usually, as you know because they have to wear mask when they come in (or at least I hope think that’s the reason, it might just be that they don’t like me??) they don’t come in unless they really have to which at times just makes the feelings of like being in prison a lot worse mind you there are times that I wish they didn’t come in such as before about 9am in the mornings would be nice, but today there seemed to be someone coming in every 30 minutes or so.  They were saying things like just come in to see if you are okay or do you want anything at all? Or even just come I to see if you wanted a natter and that, which I found quite strange, came from probably the only nurse on that I had never met before so wouldn’t have much to say anyway ha ha ha…  it started off okay but to be truthful by the end of the day it was quite sickening with being given the Royal Treatment and can’t wait to go back to complete isolation. I guess what made it worse was that because of the lack of sleep all I wanted to do was to try and at least get a few hours in during the day to try and catch up but they were back and foe so much this was not an option.

I think that the nurse who had rightly bore the brunt of my ranting and raving earlier on as she was the one who it was about, thought that I might have a problem with her personally and did say that she was on in the morning too and did I want to have another nurse looking after me instead of her.  I just thought to myself, “You haven’t really been listening to me have you because at no time did I indicate that and along with the particular problems that directly lay with her I went on about the general problems with associated with being locked on here”.  I did say no I don’t want another nurse at all that is not the point and besides I thought that as I had brought all this up she will probably be up to speed tomorrow and I might get things done.

After a pretty non eventful day I went off to sleep quite early actually, around 10.30pm and pretty much managed to sleep right through.  Even the night staff were on their toes last night and I had my IV Anti-biotics really early and had a cup of coffee too which was nice.  Aint it strange, when I’m home I don’t drink coffee or tea or anything hot actually but when I come in here I really look forward to my cuppa 4 times a day.  I know I’m a sad git!!!  Ohhhh look out the slop stirrer has just asked if I want a cuppa and after toddling off to get my order of a Latte please with a sprinkling of Chocolate on top,(That’ll be the day), she has just come back saying “ Sorry I haven’t got any coffee yet until I go down to the office”.  You What.  That is a basic ingredient in the making of tea and coffee and you should have some on the trolley before you start your rounds.  
I feel another blog of dissatisfaction coming on look out.


I’m off to start it now.

See Ya!!

smelling mistkes!!

  I know that my spelling is never that good and to be honest the spellchecker is rubbish on here but I feel like I should apologise in advance as I think it will be worse than usual today due to trying to write this through tired squinty eyes after a long sleepless night at Heath Towers.  For once it was not my fault either which is annoying.

As I tried to explain fairly clearly I hope in the last blog they have decided on this new approach to my treatment and part of this involves giving me a good dose of Immunoglobulin to try and boost my immune system.  The preferred method is via IV and it’s usually around 3 or 4 bottles but was 4 on this occasion.  The first dose is given really slowly as there are some bad side effects such as lowering blood pressure and raising temperature amongst other things.  I know when Merlin and his merry men and women came a visiting in the morning(and not at lunchtime for a change!!) that they had written it up for me to have yesterday and the nurse in control of my destiny had ordered it so it was a case of just waiting for the blood bank to pull their finger out and deliver it.  Well bugger me it finally turned up at about 8.15pm last night meaning it was to be a long night for me.  One of the problems with having this is that due to the side effects I mentioned they are in and out like yoyo’s taking your blood pressure and temp etc etc and not even I have managed to sleep through that experience sadly.  I had asked the nurse who had connected me up to Metal Mickey with the pump from hell on it. (this is a drip stand that has a pump sort of hanging off it through which they run the various IV’s that need accurate delivery rates etc) how many have I got to have and she said they’ve only written you up for 10mg which is just one bottle.  Great I thought at least I won’t have to put up with this constant grinding noise coming from the pump and the constant interruptions from the nurses to check if I was still alive all night.  Well, about 10.30 the nurse on duty for the night came in wielding another bottle of poison to my dismay.  I asked how many I have got to have and was told I was having 3 large ones and one half bottle.  Nooooooooooooooooo!!!!!!!!!!!!!  Well I thought to myself I hope there is something good to watch on the telly all night as I was not going to get any sleep.  Why me, what have I done to upset everyone???  However much I could do with having this poison or should I say amber nectar really as it is supposed to be doing me good, surely they know how long it takes and the hassle involved etc etc and might it have been better to wait till the morning to start it instead of that time of night.  In some fairness to the nurse who had originally started it off she thought it was just the one bottle which wouldn’t have been so bad although in saying that it’s a bit scary that she didn’t know that I was to have more because as far as I know they have to ring down for the rest of the bottles one by one when they are needed, a bit like they do with Blood as this is a blood product after all and she would have just left it at one I guess and no one would have been any wiser.  

It must have been about 4am by the time I managed to drop off and they were back in for more poking and prodding at 6.15.  That was nice of them I thought, very thoughtful.  Well that was it no sooner that one comes in they are followed to be entourage that is the Daily Heath Towers Express, the only train I know of that you can set your clock by and in all the times I have been in it is never late and never ever cancelled.

So I’m sat here, well let me correct that, I’m lying here writing this trying my best to see the screen through eyes that look like they actually died about 10 years ago and are about as useful too.

On a lighter note a package arrived via my mother yesterday.  It was covered in wild west labels and smelt of Spicy Cajun Cooking, well actually it was in a Tesco’s carrier bag and smelt of the delicious nice warm Clarks Pie my mother had managed to get past the border guard.  When I opened it up though three little head popped out, well one large one and two little ones to be truthful.  Three new Ducks had decided to come to stay.  They looked tired after their long journey from the Wild West where they had been cowboys and Indians but have decided to come and live out their days with me at Duck Haven.  I’m sure they will settle down nicely and the others will be so interested in all the stories these three must have about their life in the outback.  It’s so nice to see the three of them getting on together after years of fighting one another, sort of gives me hope for humanity after all.

Right I am going to try and get a bit of sleep in now I have the chance, I have put out the do not disturb sign and put a wedge under the door to stop them coming in too so I should be okay for a little while anyhow.

See Ya!!

A New Dawn!!

Well after a pretty uneventful day all in all it has actually turned into a quite positive day in the end.

After a day of nothingness really where to be honest apart from the over the top special service provided by the slop stirrers ( thanks Dale for giving them a kick up the bum) and the visit from the physio for the usual daily, lets see just how much of a mess we can make of him, session not a lot to report. That is until this evening.

I had a rather interesting visit from one of the newest Registrar’s a lovely bubbly Irish lady who looks like she has just stepped out of a Come Visit Ireland commercial all fresh and wavy hair ha ha..

Well over the last few days she has mentioned a few things as regards treatments that might have some benefits for me which has sparked a new found feeling that maybe just maybe she might be onto a winner in some way or another and lets face it when things get to the level that they have done with me you sort will try just about anything that might help.  She explained to me that as usual I had been the centre of attention at the weekly Pipe Smoking Convention where all the Elders and their underlings attempt to put the world to rights as well as try and come up with some ideas as to how to treat patients while they’re at it.

Some of the symptoms especially those connected with the Bronchiecsasis which I now have on my right lung as well as my left are very similar to those shown by people suffering from Cystic Fibrosis which I already knew from the past because the physio treatment has been the same, lots of chest compression exercises etc to try and remove the build up of phlegm from the lungs.  This is not a new approach or in fact a miracle diagnosis but what follows is certainly not something that has been discussed or tried with myself certainly and that is, along with the physio aspect of the treatment they are going to treat me medically the same as if I were a cystic fibrosis patient too.  This has in fact already started as they are not hanging around in that they have changed over my Anti-biotic to another Penicillin based one that should cover a lot more bugs that may be lurking in there.  I guess the down side of this is that they like to give around 14 days worth so it looks like I may be here a while yet which to be honest I was half expecting anyhow.  Along with this they are going to give me a dose of Immunoglobulin which acts as a kind of boost to your immune system helping it to fight off infections by itself and not rely on Merlin’s Potions so much.  The other major part of this new approach is quite a new experience for me too and I think might just be the key to whether this works or not.  That is, they intend to bring me back in regularly to both top up the Anti-biotics via IV and also to top up the Immunoglobulin and all when I am well and not wait till I end up coming in with some infection or other.  Shifting the emphasis on being Pro-Active instead of the usual Re-Active which will be refreshing change I think and am looking forward to it very optimistically.  The way I look at it is that I was going to be coming in anyway as I said for one infection or another so the actual visiting will not be any different its just the thought of being well when I come in that is appealing to me.

So at last maybe there is something positive starting to happen and who knows it might just work.

So in the words of a dear friend Onwards & Upwards.

See Ya!!

shape up or ship out!!

Now as you all well know I am quite a laid back sort of guy and although I have the rant and rave I am actually not that out spoken at all.  In fact I quite rarely actually speak up for myself for one reason or another which I know has probably ended up not getting the sort of attention and treatment I deserve.  I know that this alone really winds Judith up but thankfully she has always come to the rescue when it has been needed not that this is ideal.

There are a number of things that have happened or more accurately not happened whilst I’ve been in Heath Towers this time.  I am  not talking of life or death type things and in some ways not even directly connected to my treatment but to be honest added together they have begun to really wind me up and make me start to demand things be done.

I suppose I noticed it a couple of days ago.  When the Slop Stirrer came around with the feeble offering at tea time, the tray and dirty plates etc were still on the window sill from lunchtime.  Then later on, usually around 6.30 – 7pm they come around with a cuppa which is the last you will get unless you talk very very nicely to the night staff who if they have time will make you one, well they just did not come and by the time I had noticed it was too late they had gone home.  Well the next day came and I thought I would keep an eye on it today.  Well I am sorry to say that by the time the night staff came in there was the breakfast dishes, the lunch dishes and the teatime dishes all neatly lined up on the window sill waiting to be collected and doubtlessly growing all sorts of nasty things whilst they are waiting.  Now I find this just not acceptable at all as well as not being hygienic.  The problem seems to be with one particular slop stirrer in particular although others have also done the same.  This person just really does not like putting on the required face mask in order to come into the room even though it is only for about 10 seconds and to make it worse she is so nice to me and always stops for a natter whenever I have seen her out and about so its not as if I have upset her or anything.  Well enough is enough I actually told the nurse in charge that I was not happy and wanted something done about it. If not then I will demand to see the Catering supervisor.  I had similar problems on other occasions when I have been in here and they have actually not even offered me food at all some days and the excuse was that the slop stirrer was new and didn’t know the ward layout.  Well you got eyes haven’t you????


As if this wasn’t enough I had a pretty miserable day I’m sorry to say on a nursing point of view too.  Now as I have said numerous times I know the poor nurses on the ward and the day unit hardly have time to blink let alone run around at my every whim but the last few days seem to have been a nightmare.  I think maybe with the food thing happening at the same time has made this more of a problem but hell it is a problem that I need sorting.
I had a Pic-Line put in before I came in here so that they can give me the required poisons and also steal my Red Nectar whenever they wanted without the need to throe javelins at me every 5 minutes.  Seeing as I have only the 1 vein left that is accessible and that’s the one they put the Pic-Line in you can understand me when I say that I want to try my damn hardest and do everything that is recommended to make sure it continues to work properly as the alternative is very very bleak.  The main recommendation to maintain a good flow of blood through it is to put on Hot Packs, which are just small bags of this Blue Gooo that can either be warmed in the Microwave or in a jug of water etc.  They need to be put on 4 times a day for 20 minutes at a time although the more you do it I always find the better so aim for around 5 or 6 at home.  Well I started asking at around 10am if one could be warmed up for me please bearing in mind it takes probably all of around 2.5 minutes in total to do including walking to the kitchen and back.  The original answer was I am a bit busy at the moment and will do it when I have a spare minute.  Fair enough I don’t want you to drop everything for me.  Well after this I must have asked about 6 or 7 times for it to be done sort of every 30 minutes or so still with no success.  All I kept getting was I am and have been very busy this morning.  WELL WHOPY DOO!!! I thought.  THE LAST TIME I LOOKED I WAS A PATIENT TOO AND NOT JUST SOME STRANGER WHO HAD WALKED IN OFF THE STREETS FOR SOME ATTENTION!!!!!   It’s time for jonny5 to come alive I think and start to demand attention.  To make things worse the nurse involved was complaining that the Pic-Line was really slow at giving away my precious Red Gold which I hastily pointed out that if she had bothered to give me a hot pack then that would have sped this up 10 fold so it’s not just for my benefit it’s in their interest to look after it too.

I think they will be seeing a drastic change to chilled out laid back john as I will have to begin standing up for myself.

Okay then that’s better now I got that off my chest.

Talking about chests mine was a bit more rattly last night than of late.  I think it might be down to the fact that the physio had done some chest percussions earlier on to try and bring up what is lurking in the bottom of my lungs which is the first time since coming and as a result has probably dislodged a bit that was refusing to make the complete escape to freedom or into a little plastic tube to be interrogated by various Bug Doctors.  Does the Geneva Convention cover Bugs caught in wartime???

I might, as I know there are a few people who I have spoken too recently who are new to reading this, put on an update about the Names of various Characters involved in my interpretation of War & Peace just so they can at least try an keep up.

Oh yeah, I will when I get out too try and post a few recent piccy’s of a rather important wedding that took place just before I came in here.  It was between two very much in love Ducks who you might remember.  Bud & Shirley.  It was simply a quacking day!!!!

See Ya!!

No Space!!

Not a bad night for me last night.  I managed to get a little sleep at least in between the Various interruptions for the usual stuff like IV Connections and drugs and the odd trip to the loo as one thing I have found since this skin condition got a bit worse is that all my other Internal organs are obviously fighting for space in there too.  So as a result I find I am making more frequent trips to the loo and also I can’t eat the large meals that I used to, well not if I want to breathe as well. This cutting down on food you would think would be a good thing as it’s a chance to try and control my weight gain brought on mainly by the constant Steroid intake but I have not lost the ferrous appetite though so I find I some days I seem to be eating almost constantly all day long.  My stomach seems to fill up pretty quickly and along comes the full feeling but about 30 minutes later I could eat the same amount all over again and feel like I haven’t actually eaten anything.  I have always tried to have a variety off relatively healthy snacks around but as I’m not really a fruit person I have to admit I fallen head over heals with the joys of Walkers Crisps.  I am making my way through the range slowly.  I was quite heavily into Bacon flavour for a few weeks until about 2 weeks or so then it has been Prawn Cocktail which incidentally taste nothing like prawn cocktail at all but I do like the sharpness of them as well as the fact they stink out the Day Centre whenever I am down there which is always a laugh and come to think of it might actual get me seen a bit quicker if I was to open a packet because they might just want to get rid of me quick Ha Ha Ha!!!  I have found that All through this my diet needs have been very much a roller coaster ride like the rest of the treatments etc and my taste buds sometimes change on a daily basis which is a real pain when it comes to shopping for such things hence Judith and myself have come up with a pretty foolproof system whenever I am staying at the convenience of Heath Towers, I text her each day or night as long as its before 10.30 in the morning with whatever I fancy that particular day and she stops at some point on the way in to get it.  That way we don’t tend to build up stock piles of stuff like we used too as Judith did quite a few times, moreso when I really wasn’t eating much at all and I guess she was just glad to see me eating something, whenever I asked her to get me something she would come back with a pile of them only for me to go off them a day or so later leaving us with jars and packets of stuff all over the place.  I’m not so bad at the moment as between us all at least the crisps would get eaten by someone, unless anyone want 120 packets of Walkers Bacon Crisps Ha Ha Ha!!!

Right on a serious note, Merlin flew in at his usual inconvenient time just as they had served up lunch which was a juicy Roast Lamb Dinner.  He had the result from the CT Scan the other day which was sort of good and bad news really.  It was good in that it didn’t show any major sites of infection but it did show up an area on the bottom of my right lung that showed signs of Bronchiexsasis (Spelling is bad sorry) with some fluid there too which would probably be caused by this because my lungs haven’t been able to clear it through normal means.  This would somewhat explain why none of the antibiotics have had any effect on the problems of late as it is not an infection but more a condition whereby the tubes inside your lungs are not working properly and failing to remove any phlegm etc from building up etc..  It can be treated with some intense physio which is good although his next move now is to contact the Chest team at Llandough Hospital to find out what they would suggest. Whether I need and Brochoscope or are they happy to proceed with the physio and also whether it can be done her or would I have to move over there which as many of you know I have great reservations with doing.  My general feelings are that unless they really expect to find anything new from the bronch then I’d rather they didn’t do it and I can’t really see why they couldn’t do the physio as when I mentioned it later on today to the ward based physio she knew exactly what I meant when I talked about the treatment and they can do it here as its more a case of hand on beating of my chest whilst laying in various positions etc and therefore I would feel a lot more comfortable staying here.  They will continue the antibiotics as a precaution till Wednesday or Thursday by then they will hopefully have contacted Dr Gelder to see what to do next and then I suppose we can look at getting my freedom back and making a mad dash for escape.  Better start digging the tunnel then I guess.

Now where did I put that spade???

See Ya!!

prisoner!!

Is it too much to ask to not be treated like I am actually in prison whilst I’m locked away in this room I ask myself?

Well the weekend is here again and as per usual the hospital grinds to a halt.  I don’t know why the don’t use up the time to try and catch up on the waiting list and stuff or do the Consultants and Surgeons turn into Pumpkins on Friday night until Monday morning??  It just seems such a waste of time as the beds are all full yet nothing is happening so they have to feed and house us.

Well onto today’s episode in my life’s saga.

I haven’t been sleeping too well which is nothing new I know and the fact is I never sleep too well in here anyhow so I’m not worried about it.  As I was saying I think it was yesterday that there is this constant flow of people in and out first thing in the morning and sadly this is still the case on the weekend even though there is even less of a reason to be torn from your slumber so early.  WHY??  I keep asking myself.  This morning I seemed to be particularly tired even though I did managed to grab a couple of hours shut eye last night so when the Wagon Train started rolling you can guess I was not particularly overjoyed as I was just about beginning to get comfortable.  Well at least the first couple of visitors only required me to stick my arm out from under the nice warm blankets or just a no thank you or yes please to coffee or tea etc.  Then the Bed Patrol turned up.  “Can we weigh you and make your bed” was the offer on the table and although a tempting one I decided to see if I could prolong my hibernation under the sheets only for a little while longer. So I asked if they could come back in a while as I was still quite tired and the answer was that they pushed the weighing chair in and said lets just weigh you then you can go back to sleep.  Well I guessed at least that was a quick jump out of bed and then straight back in which wasn’t too bad so I obliged.  When she had noted down my weight and I was off back to bed I overheard the other nurse saying just put in his notes “Patient Refused Bed Change”.  WHAT???  I BLOODY NEVER DID!!! I asked if you could maybe come back later to do it, if not it is not a major problem, heel I don’t change the sheets etc at home every day, does anyone???  The thing that annoys me most about this is not so much the fact I didn’t refuse to have my bed changed but that they have to write it down at all. WHY???  Would it not have just been easier to maybe come back later on when you have a spare 2 minutes because that’s all it takes or will that disturb one of your gossip sessions later on.  It’s not like me to think like this and I of everyone knows how hard the nurses work on here and it is usually pretty full on and non stop all day but its not the end of the world to have to make the odd bed or two later than expected is it?  

Well I suppose I could take it that I have got out of bed on the wrong side today and am waiting for what ever else it throws at me.

I didn’t have to wait too long either.  There is the facility on the ward thankfully to be able to keep things in the fridge in the kitchen for consummation later.  I quite like a banana Smoothy sometime mid morning as I don’t like to have breakfast as such, so, I pressed the old buzzer and waited for the pitter patter of feet heading in my general direction.  A head popped around the door and I literally mean A HEAD!!  Asking what I wanted, so I asked for one of these drinks and off she went.  Well she returned a short while later bottle in hand in once again THE HEAD popped through the door leaving the remaining body firmly rooted outside and said “I will just throw it on the bed”.  So I had to get up off my chair to get to the bed to pick it up, which I know is no real hardship but all because a lot of people can’t be bothered to put on the obligatory mask that is required when they come in.  This really does irritate me when they can’t even be bothered to come in and just sort of shout from the door and emphasise the feeling of being locked away in prison or maybe like I have got the plague or something.  I will have to count the number of people that actually come in one day and the time that they spend in here too that might be interesting reading.  

It’s bad enough being locked away in here without people making it unnecessarily worse by treating me like a leper.

Well there goes I’m probably off a few peoples Christmas card lists now.  Ah Well!!

See Ya!!

Something Fishy!!

Not a lot to report today you�ll be pleased with although there is still no
guarantee that I won�t rant on a bit just for the fun of it.

For some strange reason unbeknown to me I didn�t sleep a wink last night and
was still listening to music at 6am when the wagon train rolled up in the
shape of a delightful young nurse yielding the first dose of poison for the
day. The thing is once the first person whether it�s the cleaner or caterer
or a nurse etc has come in there is always a stream of people then that are
all over the next about 2 hours going to be invading your space for various
things and although there are some that can be ignored if you wish like �Do
You Want A Cup Of Tea�?? Shouted at you with a squeaky, high pitched quite
often Asian twang that will wake the dead, Mmmm maybe that�s a bad example??
But there is usually the medication then the food then the cleaner who
always insists on coming in just to empty the bin, which is more often a
waste of time as it doesn�t get used much and besides they are coming back
in a while to clean the room, can�t they do It then?? They always always
BANG down the metal lid too which is by far the best alarm clock I have ever
seen too, I will have to invent one that makes the same noise I will be onto
a good earner!!

Right, that�s morning out of the way apart from the deadly quiet hour or so
between 10.30 and 11.30am when nothing ever seems to happen and in fact it
all seems to go deadly quiet.

Okay now we are on to Lunchtime.. Ahhhhh LUNCHTIME!!!!

I look forward to Friday lunch in here, which you may find remarkable I
know, but the things is they serve up one of my favourite meals of Cob In
Batter, Chips and Peas and due to the nature of it they can hardly get it
wrong too so its usually quite nice dare I say it??

Well today it was just my luck that the Porter turned up at 11.30 to take me
to have a CT Scan which was cutting it fine to be able to get back in time
so I was not too amused and when I mentioned it to the nurse in X-Ray she
just said well can�t they get me a sandwich. Well I won�t tell you what my
reply was but it was not oh yeah lets have one of their delicious
sandwiches!!!

After a short wait thankfully I was under starters orders and we were off
into the Tunnel Of Love for a few pictures of my 5yr old Lungs. Maybe they
might find something else usefull in there while there at it?? It was a bit
awkward to get off and on the trolley and I had to sit with my legs propped
right up and my head raised slightly otherwise I wouldn�t have been able to
breathe which usually proves to be quite necessary. It seemed no sooner
than I had turned up that we were back off to the ward after signing a few
autographs for some enduring Blog Fans along the way.

To my great relief when I got back the Caterer hadn�t been around yet,
Phew!!! �Ah I Hear The Distant Trundling Of The Trolley� �What Do You Want
For Lunch Then�? �I got Chicken or Mince Beef & Onion�. Well I was waiting
for the AND??? But when I didn�t come I asked �Don�t you have any Fish
then�? �No they are all gone. I did 7 Pieces too and in fact I was hoping
for one myself� 7 bloody pieces is that all she did for a ward of 28 beds
and that was including the one she wanted for herself??? I�m sure it is not
just me that would jump at the chance of maybe the only half decent meal of
the week, well it proved that because she said they all went on North side
(the ward is split into 2 for those that don�t know North is the Bone Marrow
Transplant section and South is the general Haematology end really). Well I
was gutted and had to go for the next best option of chicken, and at least
there were chips and peas left. Well no sooner had I started to eat it that
Merlin turned up for his usual Pre Weekend Poke And Prod Session but this
time he had brought a few students with him to test them out a bit. He is
as sadistic as me sometimes and takes great pleasure in presenting them
probably the worse example of all the bad things that can happen to you Ha
Ha Ha!! Why does he always have to turn up when I am eating though Grrrrrrr
I recon he must have the room bugged and waits till he hears the Caterer
then casually waits a minute or so before pouncing.

Apart from showing off his prowess to the students there wasn�t much
discussed only that things are going as planned at the moment and he will
have to wait to get a detailed diagnosis on the Scan from the X-Ray team and
then they will contact the Chest Team to seek their advise as to the next
move.

And to be honest that was that. Judith came in for a while with some Ya!!es
for me to munch on later and we had a nice natter. She has a bit of a cold
at the moment so didn�t stay too long as she was quite tired and wanted to
go and try sleep it off. I wasted no time in tucking into my Fresh Cream
Scone and will shortly be polishing off my Seafood Sandwiches as the Curry
for tea, which rather strangely had little or no fat on it compared to that
mince the other day when it wouldn�t look out of place on a curry after all
was rather well lets just say HORRIBLE!! Leaving me starving again.

I wonder if I send in a bill for all of my expenses for food etc as a result
of their more often than not un edible excuse for food that they will
reimburse me?? Might be worth a try!!

See Ya!!

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Only A Youngster!!

Okay I guess you could say that I am settled I�m now and more to the point
reminding the nurses how much they have been missing me and have had it so
easy.

I feel like it�s my job to come in every now and then to keep them on their
toes and besides I think I brighten up the price like a bunch of Venus
Flytraps.

So what s been happening then. Well I had a load of pictures and scans of
my heart late on Wednesday night which was fun as the equipment is so large
it involved a complete room re arrange which I thought was quite funny as I
just sat on the bed whilst they did all the moving around. Well someone has
to supervise don�t they? Thankfully the Cardiologist did say that in his
opinion my Heart condition had not worsened since my last tests some 7
months or so ago, and that it would not really be a factor in causing the
current symptoms which is all pretty good news really in that that�s one
thing out of the way.

I also was subjected to a Lung Function Test yesterday too which is always
good entertainment for everyone involved apart from me that is. Who would
think it was possible to get in some of the messes I do just by huffing and
puffing into this little cardboard tube thingy?? It usually results in me
being a tangled mess either on the bed or chair wherever I started from
struggling for what ever little morsel of oxygen there id going spare.

Well I was honoured by a flying visit from the Great Merlin earlier on which
was a surprise as I was told he wouldn�t be here till Friday, See, he just
can�t keep his hands off me for one minute can he? He went trough the
results from the Cardiologist, which I have said that I knew already really
and went on to mention about the Lung Function Test Results which were quite
interesting. It appears at the moment that I have the Lung Capacity of a 5
Year Old Oh Dearrrrrrrr!!!! That might account for not being able to
breathe too well I guess because no matter how hard I try not even I could
get away with calling myself 5 yrs old. He is happy that they are doing to
right thing as in the course of antibiotics they have me on and the physio
involvement which has also started,(god those people are sadists aren�t
they)? He thinks I might well be going down for the CT Scan later on today
but it has certainly been arranged and then depending on the results of that
they will decide whether to do another of the old Tube Down Into The Lungs
Trick, which for those who are fortunate to have had one of them you will
know what I mean by saying you don�t really want to go volunteering to have
another one done if you can help it let alone about the 12 I�ve had, then
again you know how I like to get my monies worth. Only 2 under sedation too
the rest I had to be awake, Now there�s an experience to cherish if ever
there was one..

The food was lovely today especially the Bar-B-Que Chicken my Mum and Dad
smuggled in and the Tortilla Wrap Judith got past the X-Ray machines the
only problem was I had to eat the muck they dished out too as there is no
way I could survive on just that and that�s where the lovely comment comes
to an abrupt end.

I had a visit too from the lovely Sarah this afternoon. I had planned to be
seeing her today anyhow but she decided when she knew I was coming in that
she would come in and see me here and to be honest the way things have been
at the moment I really needed to have a session with her to empty my thought
bank so to speak. I thought it would be quite difficult to actually be as
open and frank as I would usually be if I was seeing her on the outside so
to speak but there was nothing to worry about on that score because no
sooner had Judith left as she was still here when Sarah arrived that the
flood gates opened and there was this overwhelming tidal wave of stuff just
seemed to keep coming and coming. I know this has sometimes happened in the
past when I haven�t been able to meet up with her for a while so I was
expecting it a little but just not that much. I find these session
extremely helpful although they can be very very tiring not just emotionally
but also physically strangely enough and often feel like I just want to
sleep for a while after each session and today for the first time I can
remember she had only been gone about 2 mins and I was snoring my head off
ha ha ha!!

This is I think one of the most invaluable services that I have needed and
used etc through this all and sadly it generally hasn�t been offered to
people and its been left to you to go searching for it. I know I have
passed this information on to Sheri and Sarah to pass on to others in the
future so things should change because after all it about treating the Whole
Person including the Mental Wellbeing and not just the Medical approach
which is the norm sadly these days.

As you have probably gathered by the fact I am posting at the moment that my
new toy did arrive and I am able to connect up the internet ect but it is so
damn expensive that I will only be using to bog and pick up the odd email
for now till I work out how to use it more efficiently that is.

Okay that was a long one today for a change.

See Ya!!

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Edible?

Well I thought I would start off today�s posting on a low note and see if it
gets any better towards the end although I kind of think it will probably
get worse if past experience is anything to go by.

After some deep searching of the one remaining grey cell left I have decided
to talk about a subject very close to my heart and also quite relevant at
the moment due to my being banged up in Heath Towers and that is �Hospital
Food�.

Well to be truthful most of the time it only just comes into that category
of being food in the ever so slightly edible sense. It always amazes me how
when the instructions are clearly printed on cartons to be warmed up as we
are lucky, suppose to be anyhow, on C1 in that all the food is cooked on the
ward so should be a lot fresher Ha Ha Ha!! That they still manage to mostly
burn or at the very least over cook everything in sight. Can�t these people
even read and follow instructions??? Well to be honest a lot of them with
due respect are extremely hard to understand due to them being of foreign
decent.

I guess there is some validation in the saying that you get what you pay
for. If they pay these people peanuts they are going to get monkeys after
all aren�t they?? Lets face it not everyone can cook yet the mix of people
that have come and gone just on this ward has been eye opening to say the
least but I guess they have all passed the requisite Food Hygiene
Certificate which proves they can cook NOT!!!

In their defence though some of the food is already dismal before they get
their hands on it so they are onto a looser before they start as not even
Gordon Blinking Ramsey could make a decent meal out of the trash they are
trying to force down our throats a lot of the time.

Take yesterday for example I decided on the only thing that even seemed like
it was intended for human consumption for lunch and that was Beef & Onion
Mince with Mashed Spuds & Veg, oh yeah and a Banana which if all else fails
at least they surely can�t mess that up, can they?? Well when it arrived
just for starters it looked like just a big splodge on the plate and not
very appetising at all. There was about an inch of bright red fat covering
it all. Now this amazes me because that would indicate it has been fried at
some point and as it�s beef that would have been in loads of oil as beef
would not produce that much fat on its own and it would have been just
warmed up on the ward so its not their fault. The mashed spuds could only
just be recognised as being of this planet by the odd black bit to reassure
you they were actually potatoes and the Veg consisted of Swede which
although cut into microscopic pieces was still like eating little stones and
was rock hard. I couldn�t cook this bad if I tried not that I would want
to. The overall taste was one of Grease and fat from start to finish and to
be honest for a few hours afterwards too as the taste sort of lingers. I
guess the calorie content was pretty much zero too and as they are paranoid
with your weight in here that�s not idea too, in fact I have lost 1.5kg
overnight so at this rate I wont be here at all in a couple of months if
they keep me in.

So who�s to blame?? Everyone involved from the funding to the serving and
everything in between and in a small way us patients are because although we
have our moans about it we never do actually complain officially about it
apart from me now and then as you might have guessed not that it gets me
anywhere nearer to a nicer meal but I will say that it has brought the odd
luxury my way like the odd Bacon Sarny for breakfast when my favourite
caterer�s are on and the nicest piece of chicken etc etc.

So next time you are in don�t be afraid to speak up and ask for decent
nutritious food, after all it is in their interests to provide it to you so
they can build you back up and kick you back out into the real world
screaming and shouting.

Well that wasn�t too bad was it and I surprised myself by being very non
judgemental I think.

Right off to down another packet of crisps, the 4 Th packet today as �THE
FOOD HERE IS CRAP�

See Ya!!

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1st attempt

Well I�m here now so let�s just get on with it.

I was up bright and early with the larks this morning so that Judith could
drop me into Heath Towers between 7 and 8am, well to be precise I drove
myself into Heath Towers as a sort of last request before being caged up for
however long this is going to take and Judith will then carry on to work
after she has handed over responsibility for me.

The roads were pretty clear that time of day thankfully and we were there in
no time at all. I don�t know why it is but every time I come in I always
seem to have endless amounts of bags all full of just the bare essentials to
get me started. I see people turning up with like just a carrier bag and
that�s all, whereas I turn up with the Laptop Bag a Small Suitcase for all
my Clothing and toiletries etc, then there�s the bag full of Medication
which can be quite huge at times itself. It gets to the point when there is
so much stacked up on top of me and hanging from the Wheelchair that poor
old Judith must be thinking she is pushing a tank up a hill with the brakes
on. To make this all worst though you want to see what its like when I end
up leaving, that�s so much worse, so much so that Judith usually starts to
take bits and pieces home a few days before otherwise she would have to go
hire a van or something.

They were a bit surprised to see me so early but I didn�t quite understand
this as I was only speaking to one of the nurses on duty last night a
couple of hours earlier and explained I was coming in at that time. Well the
day has sort of just trundled along really. Not a lot has happened that you
would have noticed but behind the scenes things such as the arrangement to
have a CT Scan and liaising with the chest team and physio has all been
going on as well as the fact that they have started the IV Antibiotic too
which will hopefully start to do something in a few days or so. So all in
all a day of progress I think or as Peter would say �Onward and Upward�. I
got to meet a new member of the team who�s name slips my mind at the moment
but he seems a cheerful chappy so I�ll have to put a stop to that pretty
sharpish!!!

I was going to go on and write a rather interesting article about the
hospitals idea of, �A Right Old Laugh�!!, yes, you guessed it, �Hospital
Food�, but it would be a shame to end what looks to be a more happy,
positive blog posting on a low, depressing, demoralising, disgusting
note��well you get the picture I�m sure, but be warned the longer it goes on
the more intense the blog is going to be so I hope for all your sakes it
comes out soon.

Just a little note for Jacqueline, lovely to see you both hope they didn�t
poke and prod too much and tell your Mam I want a postcard from Blackpool
with her signature on OR ELSE!!

_________________________________________________________________
Windows Live� Messenger has arrived. Click here to download it for free!
http://imagine-msn.com/messenger/launch80/?locale=en-gb

I'm Off!!

Well I guess in a lot of ways it is good news but it is still quite hard to think that way.  What am I going on about you might ask yourself?  Well as you know I went to see The Wizard today and for once I did speak up for myself with some help I must add from the Delectable Sheri.  I explained to him all my concerns about my health at the moment and the possible future, if there is such a thing for me long term if things were to continue along these lines and he was very understanding.  He actually agreed that I need to pay a visit into Heath Towers for a general Service and Oil Change etc.  He explained that he wants me to get a CT Scan done and various other blood test along with some very intense Physio Input to try and make use of what is left so I don’t loose it completely.  I pointed out too my concerns about coming in and having to wait for the right treatment regime to start and then there is the fact of wanting to have the only room that has toilet facilities ensuite so to speak as the others are all serviced by Commodes YUKKKKKK!!!!  The other major point for me is the Real Need to have a Pic Line inserted preferably before I go in or at the very least the minute I get there as I only have one real accessible vein left as I have said.

Well the plan was to get Sheri on the case as regards sorting out the bed problem and the Pic line etc and The Wizard will liaise with the chest team at the other hospital and the Physio team and the Ct Scan etc and he would try and get me in as soon as possible, probably later this week, which suits me fine as it gives me a chance to sort things out at home and go in prepared for a change and not all rushed as I always forget loads, and besides I just moved off all my music from the laptop to the Server last night and I will have nothing to listen too so I need to reload it all again.  

Well Blow Me, Sheri came back in a couple of minutes and said that she has managed to find the equally Delightful Ailsa who wants to put the Pic Line in straight away.  Whoopee!! That’s one thing out of the way at least.  Then she went off and when she returns about 10 mins later she had managed to get me a Bed on the ward too.  There was a slight snag though before you all go jumping for joy.  It was one of the room that relies on the old Fashioned mode of Waste disposal if you get what I mean YYYYYUUUUUKKKKK!!!!  What do I do,Argggggg.  Well I chanced my luck and pleaded that they tried to rearrange things or should I say people around so that I could get the room with a loo and a view!!  Well she must have argued me case very well because they agreed to do it and on top of that they said it would be okay for me to come in the morning too as long as I left a few things in the room to make it look like I was actually there so they wouldn’t have to give the room away, all technicalities and red tape I know but they are lovely and good to me, and I must get them all a nice big box of choccy’s.

So about the Pic Line.   Well as I said the delightful Ailsa was waiting Javelin I hand ready for the mammoth task of trying to firstly break through the alligator skin that I have developed as a result of the GVHD and then to be so accurate as to get it in the Last remaining Vein and all this after partaking of a few alcoholic beverages last night too!!!!  Well she closed her eyes and did it via mental guidance from some higher power and hey presto “SHE MISSED”.  Well I tell a small lie really, she did sort of get it in but wasn’t too happy with the positioning so decided to take it out and move up a little higher which caused a real gusher and lots of spilt milk!!!!  Right, okay, after a quick sharpening of the spear she was in a trance again summoning up all the spiritual guidance surrounding her and suddenly stood up bolt upright and with one swift forward motion she stabbed in just the right spot and I heard a pop and hey presto “We Were OOZING”.  Well next, off to X-ray to make sure she had placed it in the right general area and that it wasn’t going to pop out of my nose at any minute.  After a short while and an x-ray later I returned for the Verdict.  Ailsa and Kam (one of the registrar’s without a pet name at the moment) went off into a huddle to look at the ghastly pictures and they came back all smiling, “The Man From Delmonte, He Say Yesssssss”.  She had hit it bang on up the middle.  After the usual minor alterations and the addition of a sort of secure clasp which stops the Pic Line from being pulled out accidentally which has been a problem with me in the past it was off home to get ready for tomorrow.

I have a good feeling about this visit this time and if things keep going this way we might actually get somewhere for a change and it might end up with some even little improvement.

For all those who were expecting the rant and rave about the efficient workings of the Hospital transport System, I’m sorry to have to disappoint you, and believe me I really am sorry they were actually highly efficient today and got me there on time and home quickly afterwards and all in one piece safely and courteously too. DAMN DAMN DAMN!!!!

Okay then I guess this is goodbye for a few days at least although I have just bought a new laptop 3G card which should enable me to get on the internet whilst in Heath Towers and it should be here in a few days.  I’m hoping then that I will be able to at least blog every now and then via email to try and keep you all informed of my vast improvements and all the juicy gossip which I know you want to hear about more!!!!

Right I’m off now.

See Ya!!

What Have I Done!!

Arrggggg!!!  What have I let myself in for??

You know I mentioned the other day about setting up my new website www.disabledrants.co.uk  well it is being hosted by a web hosting service at the moment which although is not expensive it is however  quite basic and will not let me do what I want really. Things like if I wanted to run a blog via the site I would have to pay extra and as that is one of the main reasons for the site I had decided to go it alone and setup one of my redundant computers as not just a Web Server, but also a File Server, FTP Server and Email Server too.

After a lot of searching on various forums and comparison sites I came up with what would be best for my needs and it is all supposed to be pretty easy to setup and maintain too which is always a good thing.  They are Apache Server and Word Press Blog software.  Well I downloaded both recent versions which I hasten to add are Free which is a bonus and set about installing them yesterday.

Well here we are 2 days later and my brain is completely fried.  All I can see is a blurry screen because I have stared at it for so long now and I’m still not much further than I was when I started.  Now up till this point I thought I knew a fair bit about the working of computers and networks etc and surely it couldn’t be that hard to do???   YEAH RIGHT!!!!!  It all seems so complicated.  The good thing I guess is that it is keeping my mind active and giving me something to occupy my time.  I think I have paid up till next march for the hosting package and the blog can continue where it is for now so there is no immediate rush but I would like to get it finished sometime in my lifetime if possible.

Right on to much more of a fun subject, My Health!!  My chest is still up to its usual tricks.  The recent change in antibiotics doesn’t appear to have cleared it up, surprise, surprise.  I am supposed to be seeing The Wizard tomorrow that’s if Hospital Transport can be bothered to show up to get me there.  It’s about time we had a serious chat about what the plan of action is from here, not just for the immediate chest infection but more importantly in some ways the GVHD problem.  As far as the chest infection is concerned I think realistically the only way to clear it up now is a course of strong IV Antibiotics which unfortunately mean another stay at Heath Towers which is not something I really want to do but I think there is no alternative as the Oral Meds are not doing the trick.  At least if I go in this way and not as an emergency they can have things in place such as a room with a view and Bacon Sandwiches for breakfast and T-Bone Steak for Tea Ha Ha  I Wish!!   No I mean things like arranging for me to have a Pic Line put in straight away as the Venflon things they put in only seem to last a maximum of 1 day with me and I only really have 1 accessible vein left this often proves difficult.  The other point is that if they do all the usual sputum and blood test etc tomorrow they usually take around 3 days for the accurate results to come back and therefore I can start on the right antibiotics for the job straight off and not on some broad based antibiotic that is just given to everyone on admission.  As far as the GVHD is concerned now that the PUVA has stopped and the Cyclosporine is obviously not working as the skin condition is worsening, I don’t want to be just left treading water as to be honest with you I don’t think my body can take much more of it, well I know that my overall quality of life as a direct result of the condition is pretty much zero at the moment and I seriously need that to change for my sanity if nothing else.  It’s getting to the point that I can not stand up for longer than around 10 seconds or so without becoming very breathless as because of the tightness I guess it is, my lungs cant expand at all, as you can guess this makes day to day tasks quite hard.  I need to know where we go from here and also need to make everyone aware that I can not, will not go on like this anymore.  Judging by the lovely nurses etc I spoke to at the coffee morning last week they all said that they would try and be there tomorrow to see him with me, so much so I think they had better hire the Lecture Hall.

So although I don’t expect to be heading into Heath Towers immediately for a General Service I wouldn’t be at all surprised for it to happen very soon so if you don’t hear from me for a few days you know where I am. I will try and keep you informed somehow if I can.

Right I’m going to Veg out in front of the TV for a while so I don’t have to think anymore.

See Ya!!

Sleeping Beauty

Well what do you know I can sleep after all.  As you know I have been having problems trying to get any sleep at all for a little while now but for some unknown reason I managed to get about 9 hours sleep last night with only one wake up for some light relief then straight back to the land of nod.  I was tired around 10pm which is about usual and decided to turn off the light and turn down the TV and try and get some sleep and the next thing I know it was 3am and time for a pee.  This is usually it for me once I have woken up I never get back to sleep but surprise surprise my head hit the pillow and I was out like a light.  I think it has made a difference today as I seem to have a bit more energy but not so much that I can do anything with it mind you.

My eye has been a bit irritable today, not sore as such or painful, it’s a feeling like I have some foreign object stuck in between my lid and eye.  It’s still a ghostly shade of red and subject to some strange looks when I was at my most favourite food store this evening.

I decided after last weeks outing to Tesco’s and the sheer amount of bodies whether staff or customers that were getting in  my way, that Friday afternoon might not be a good time to go shopping and that Me and my Helper Tara would try to navigate our way around this evening instead.  Well I’m happy to say that it was a lot quieter although the shelves were a bit emptier as it looked like the shelf filling staff weren’t due in en mass until a bit later on.  We managed to get pretty much everything that we needed for the week and no doubt a load of stuff we really didn’t need at all but just had to have.  I’m a sucker for a bargain whether I need it or not.  All went a bit too smooth really, that is until we were on our way back to the car, which incidentally I managed to pull straight into one of the 5 empty Disabled Parking Bays so I cant even rant about that,  when the trolley attached to the front of the wheelchair came to a sudden halt nearly throwing me over the top.  She’d only gone and pushed me HEAD ON into a Bollard, not just caught it either, smack bang in the middle of the trolley leaving a nice big dent.  “I didn’t see it coming “she said, well I didn’t realise they actually moved as far as I was aware they were actually concreted into the pavement.  I think she is trying to bump me off on the quiet but many have tried and failed so “GO ON, GIVE IT YOUR BEST SHOT”!!!

I might try out my other new toy tomorrow.  Its all Peter’s fault as he quite often mentions Ironing in his Blog.  Well up till now there has been no way I could stand up and do any ironing not that I’m complaining too loudly mind you.  But I thought that maybe there is a way I can at least do a little and therefore ease the burden a bit on Judith.  So I went and bought a Steam Press which has its own stand too.  I can sit on the chair and press away to my hearts content and it shouldn’t cause me any breathing problems as there is very little movement involved.  I tried it out the other day when it arrived and it seems to go a much better job and in less than half the time too so could be a good thing, I will have to let you know.

See Ya!!

Eye Eye!!

Well you would think it was Masterchef around here at the moment with the amount of time I am spending out the kitchen coming up with some culinary disaster or another. At least it has all been quite nice and at the least edible anyhow. Today was a bit of a disaster though. I wanted to try a different approach to the way I usually serve up Herb Meatballs and Tomato Sauce. It’s a bit of a favourite around here as I have made them so many times now and experimented along the way to come up with what I think are now delicious meatballs. I also cook the tomatoes for a couple of hours which intensify the flavour making it really rich and strong. The difference today was to be the addition of some Parmesan Baskets filled with Creamy Garlic Baby Button Mushrooms and Parsley and some Brochette coated with Garlic and Parmesan. The parmesan baskets were an absolute nightmare. I tried 3 attempts at making them and gave up in the end after throwing £3 worth of Parmesan down the drain and as such the addition main ingredient was missing so it was just the usual Meatball and sauce which was nice but I wanted to get the other stuff right too as to be honest it was going round and round in my mind all night and kept me awake. Grrrrrrrr!!!!!!!.

My chest appears to be about the same and maybe just a little better in fact due to the Tablet change the other day. In saying that though I have been coughing a bit today, so much so that it has caused me to have a Bloodshot Eye. It looks really scary and to be honest when I did get to look at it after my mum had pointed out that it looked bad I was scared stiff and phoned the doctor straight away as I thought it might be something sinister. He rang back a short while later and went through a few details with me about blood tests etc and blood pressure which I hadn’t long taken and was normal and I had no pain just slight irritation. The doctor’s opinion was that I have Subconjunctival Haemorrhage which was probably caused by a coughing episode and is perfectly normal and not dangerous. There is no treatment as such and it should clear up in a week or two. Gives me a great chance to blame Judith for beating me up again Ha Ha Ha and get some sympathy. It looks really frightening too all Red!!!

Mum and Dad came up this afternoon which was nice too. Dad wanted to see what he would need to get to give Judith a hand to put up her Birthday Present that I got her. Well I know your all thinking I wonder what that is then must be something nice. Well I think it is really nice but not just that it is practical as well. It’s a Shed, but not just a Shed it’s a lovely Big Green Shed. Well I did ask what she wanted for her Birthday and she said A Shed, so that’s what I got her. She’s just got to put it together now, its like a bloody big Mechano Project and you want to see the size of the bag of screws involved. Should be fun to watch when they get around to doing it. I will be in charge of Refreshments and Snacks which will be vital to keep up their energy levels for the task in hand and entertaining my Mother too. Now where did I put that pile of ironing???

I’ve been busy the last few days trying to build the latest web site. It’s nothing too fancy just an extension of this blog really. I intend to eventually move the blog over to that and to setup my own server and host the site myself but until then I have it hosted elsewhere. The Site is active now although it is a work in progress. Feel free to pop by and have a look. You will find it here www.disabledrants.co.uk. You can access the blog from there as well as pictures and other stuff. Give it a try if you dare.

Okay I better go start planning next week’s menu as I’m off shopping tomorrow evening.

See Ya!!

I guess attending the coffee morning yesterday has started me thinking about a lot of things and as you all know that can sometime prove to be quite explosive to say the least let alone dangerous to anyone within hearing distance. No, but seriously, there are a lot of emotions involved along the path of life no matter who you are really, but the difference I have found since being diagnosed is that I have been made to face these and deal with them and not do the usual thing and sweep them under the carpet for another day. What do they say? “Out of sight, out of mind”, well it is true although it is not an ideal thing to do. I remember the old “Cub Scout Motto” that Lord Baden Powell introduced all them years ago, (I loved going to the Cubs and Scouts) and it wasn’t
Ging Gang Gooly either it was “BE PREPARED”. I guess his reasons for coming up with this particular saying to muster the troops does not bear the meaning as mine though although they are not that dissimilar.

Let me give you a very good example. A sad fact of life is that inevitably we will all die, that is unless you are some alien life form reading this from another planet. I do apologise to anyone who is shocked by this fact and didn’t know that was the plan for us all but sadly IT IS!! Some of us I suppose, are a bit nearer the Pearly Gates or the Eternal Pit Of Doom than others and I count myself most definitely in this category. I, along with my close family have been faced with the fact that I may well not get through this and this will probably always be a thought that pops up every now and then. I or rather, we have Discussed my Funeral Arrangements everything down to what music to be played and believe me any of you who are lucky enough to win the Golden Ticket to gain admission are in for a real treat. There are certain detail like I want to spend out the rest of my days all be it in dust form, with my first born Daughter Charlotte who sadly passed away at birth many years ago and my beloved dog Benny of many a happy year who sadly passed away last year and if it hadn’t have been discussed then I suppose this just would not have happened. There are also things like, I see my Funeral as a Happy thing in a strange way. What I mean is I want to people to remember the good times and in some way celebrate my life and be happy in knowing that I enjoyed every minute of it myself and gave it my best shot. I’m even contemplating making it strictly Grass Skirts and Loud Shirts and Calypso Music all round as Black is most definitely BANNED!!! I look upon having at least sorted this little thing out that it is one less thing for my family to have to deal with if and when the times comes and maybe get some comfort in knowing they are doing what I would have wanted. I have heard so many times over the years of people saying after burying someone, “I’m not sure if that is what Joe or Gladys would have wanted” and also being torn between Burial or Cremation as some have quite strong views I know on these things.

So I think I can safely say that I did learn something other than Tying Knots at Cubs and that was, “BE PREPARED”.

Okay it’s taken an age to write this blinking Blog today as I’m sure you understand this is quite an emotive subject, even after saying about being happy in knowing that it is sorted. It is quite hard to see the screen when your eyes are filling up with tears. A bit like driving in the rain with no windscreen wipers and I don’t suggest you go out and do that, but it is I guess the Bottom Line and it needs to be faced and I hope that maybe someone some day might read this and gain some inspiration to do the same as its not morbid at all.

Isn’t it strange how most people don’t like to talk about death and dying etc but we will all be dead a lot longer than we are alive Ha Ha Ha!!

BEFORE YOU ALL GO WRITING IN AND PHONING, WORRYING ABOUT MY MENTAL STATE, PLEASE DON’T FRET I AM PERFECTLY FINE, HONESTLY, WELL AS FINE AS YOU ALL KNOW I CAN BE !!

See Ya!!