The Future!!

I guess its been a pretty uneventful few days hence the lack of a blog. I am finding more and more these days that due to my failing mobility and of course all the other many things health wise that stand in the way, my actual expectations are less. What I mean is that maybe before my goal would be to say walk out to the kitchen and get there in one piece easily and not even have to give it a thought. I would have expected to have done this seemingly trivial task even as much as up to about 3 or 4 weeks ago, no problem. Today however is a different thing all together. Well to start with I would give it a lot of thought about even attempting it in the first place. I would only expect, and then only if all was going well on a “Good Day”, to make it to the kitchen after stopping and sitting down about 3 times to get my breath back etc. Wearing the obligatory Oxygen mask, yet still a right mess when I finally got there. So as a rule nowadays I probably wouldn’t even attempt it. All this is yet again adding to the “Not Able To Do Anymore” list as well as the “Independence Lost” list. I’m going to have to get new books soon as the list are getting larger and larger by the day. As you can imagine all this increased lack of independence is having just a little effect on the old grey matter, what’s left of it. I am trying, and somewhat succeeding, I think anyhow to deal with it and try and find positives in it??? I suppose I have by now had enough experience of all this that I should be a “Grand Master” or something?? But it never seems to get any easier. I know the general direction is heading towards having to be pretty much wheelchair and human reliant 24 hrs a day, with an hour for lunch of course, well one must eat the daily bacon sarnie, mustn’t one??? No amount of fighting this on my or anyone else’s part for that matter will change this outcome so practical thinking is required now. This is where all the problems start then. “MONEY”, the route of all evil and something that the local council/ social services etc have great difficulty in keeping control of and as a result there is none!! I would need things like, and this lot is without what I have already applied for under the DFG as in the bedroom/bathroom extension, an electric chair for a start. Door widening throughout, ramp access out the front and back, adapted kitchen, such as height adjustable worktops, hob, oven, sink etc maybe even hoists for moving around, I don’t really know as this would all be new territory for me, but I think you get the picture that ain’t gonna be cheap. I wouldn’t like to say how much the overall cost would be but having seen the usual rip off prices of any other “Medical Aid” I wouldn’t expect much change from £35.000 - £40.000.

So if anyone out there has a spare few quid they would like to donate to the “Save Jonny’s Dignity Fund” feel free to pass it on, that is unless you have a lovely already adapted bungalow you would like to let me have. I’m good at gardening, well let me put that a bit more accurately whilst you all stop chocking with laughter, I’m good at watching and ordering about other people gardening. I do make a mean bacon sarnie though and you would have an open invitation to pop by whenever for a sample.

I actually don’t think I am joking this time either!!!!

Just one other thing before I go. I have been suffering for a little while with very sore eyes, so much so that I went to see the GP yesterday and he seems to think it may be either an infection or hay fever and has given me some drops to try for the infection first then if that doesn’t work to go an to the other hay fever stuff. They are extremely painfull, so much so that I am having to pretty much permanently close my eyes to stop it being painfull. The computer has been a complete no no along with the telly too. I don’t think I would be any good at all if I was blind. I wouldn’t be able to cope. This blog has taken me hours to do through squinted eyes just opening now and then, and heavily relying on the spell checker so do excuse me if it is that bad.

See Ya!!

When Is A Corn Fed Chicken Not A Corn Fed Chicken?

It seems that the food industry have been in for a bashing this week, especially some of the big Supermarkets. It appears even today though that even buying Organic Veg can be bad for the environment.

There was a right howler uncovered after DEFRA revealed the results of a routine check on the Corn Fed Chickens, you know the ones that always look an alien shade of yellow, that were on sale at various Supermarket chains. It appears that my favorite out of town giant Tesco's” were selling Corn Fed chickens that had not in fact been fed on corn at all. Bearing in mind they charge pretty much double the cost of an ordinary chicken for these we've all been ripped off yet again. Of course they are not to blame, oh no they wouldn't do that would they?? it's the farmers fault as he had “Inadvertently Fed the chickens the wrong feed” Ummmm would this be the same farmer who has probably been farming chickens all his life and quite likely knows more about feeding them than anyone need know about??? It's strange also though that all the other chains passed with no probs. This comes on the back of an earlier clanger in the week from the BBC documentary “Whistle blower” where Tesco's along with Salisbury's this time were shockingly filmed selling potentially dangerous and at the very least way out of date meats etc in it's stores. It highlighted how easy it was for these supermarkets to get away with it by simply altering dates themselves and the fact that they ignored the dates anyhow and instead favored the old “If it smells okay then it must be okay” approach. I guess in some ways, those of us who have to shop in these sorts of places and demand cheap prices for top quality produce are to blame. As in doing so we are forcing the retailer to squeeze out every penny on profit they can from their goods. In saying that though they are making such huge profits that it is a drop in the ocean what they will make by doing this. It does make you think that if you do try and source cheap produce what are you actually getting??

I noticed today too that the Soil Association are considering stripping the Organic status from food flown into the uk. They are even considering a total ban on importing food produce all together. Bearing in mind that it appears that only around 5% of the Organic Vegetables consumed in the uk are produced in the uk i can see there being some problems there. So is buying Organic really the best option? Or is it more a case of trying to buy Local and also Seasonal. It seems that this day and age we all demand every type of say fruit and veg all year round and that as businesses such as the likes of Tesco are at the end of the day in it to make a profit they are more than happy to provide us with our every need. I don't have to think back that long ago to when i was a mere Prototype Little Jonny5, no sniggering at the back, when we all used to have to eat what was “In Season” and it never did me any harm!! i think if anything it probably made the food taste all that much better. Hands up all those like me who used to get excited watching the little tomatoes growing, often in your grand dads greenhouse, anticipating the first sweet juicy mouthful when they finally ripened enough to eat, or if you were lucky enough to live near the countryside going Strawberry picking in the summer and eating more whilst you were picking than what you actually purchased from the poor farmer before you left. It was just taken for granted back then. Waiting for the New Potatoes to come in whereas they are expected all year round now. I guess we, as the consumer have the ultimate power to change this back by simply not buying the stuff, but you and I both know that nothing will happen so there goes another piece of our culture consigned to the “History Files”, as even they are not “History Books” anymore as they are not in black and white anymore, instead they are on Disk.

Whats the world coming to????

See Ya!!

We Have Movement!!

Over the last few days things have progressed somewhat on some of the issue's i am having to deal with at the moment.

I owe a lot of this progress to my local councilor Mr John Thomas who, since getting involved seems to have made more in roads into these things than all the rest such as my mate, John Smith MP and Jane Hutt AM, who is most probably busy trying to safeguard her political future as the fiasco that is the Welsh Assembly rumbles on, put together. He is the only one that has actually come and spoke to me face to face, responded to every Email, Letter etc unlike some i could mention.

Okay then, whats been happening?? firstly on the matter of the DFG (Disability Facilities Grant). The local council has been continually telling me for some time now that i am on the only list that is currently moving and that they will eventually get around to assessing me. What John Thomas has managed to find out by contacting the officer in charge of the department is that yes i am on that list and very high up it too. Also the main reason for the slowness is not just down to money, although there is no hiding from the fact that they are £5 Million in debt they have also been running the department on very minimal staff. They have just employed 2 new Occupational therapists who they hope will be starting the beginning of June. They are also going to concentrate their attention on this particular side of the backlog so it shouldn't be long before they get around to the assessment. So there may be some light at the end of the tunnel after all, although this would just be the first step towards getting the work done.

The next thing that Mr Thomas has been trying to look into for me is the issue about a complete lack of sloped curbs in the area. He had visited a while back and saw first hand what it was like. He agreed with me then that it was not acceptable and something needed to be done. Well, he has managed to get hold of the the Chief Executive of Highways, who would have overall control in this matter and has arranged to come and visit me along with himself of course, next week. So a chance to put across my case to the person who pulls the strings and mot the usual body hanging from the end of them.

Here goes the hat trick although this one isn't down to Councilor Thomas. I have finally got around to having a re-assessment done by my Social Worker concerning the amount of hours of Home Care they provide. Up till now i have been given 6 hours a week which is supposed to be to help with things like coming shopping with me, some sort of social outing i.e trip to the park to play on the swings and slides, ohhh i do love being spun around really fast on the roundabout, don't you?? The other thing it was given for was to do some general housework etc. At the time the last assessment was done i guess 6 hours was about right for my circumstances then although what with one thing or another it is nowhere near enough now. My circumstances and therefore my needs have changed quite dramatically. I now need more help with basic things like washing and dressing which i think should not be assumed to be Judith's responsibility just because she is my wife, also as i am not as mobile as before i am not getting out the kitchen as often as i would like. Sometimes i will wait for hours for someone to come home and make me some lunch say, instead of struggling out to get some myself and ending up in a right state. It is quite a complicated issue, funding for all this, as up to a certain level financially i think she did say it was around £250 per week, the Social Services would be responsible for paying. If the total cost of the package went over this then they would have to request funding from “The independent Living Fund” which i believe is under the remit of the local Primary Care Trust, which is another ball game completely. One of the problems with this is that i would have to hand over ½ of my DLA to pay towards it, which is rather strange when they are continually telling me that i am actually living on far less than the government says i need to live a basic existence. There are as well a whole load of issues involved in going this far not least of all yet more people to have to deal with. There was also the suggestion that in the future if it appears that my medical condition is the cause for my needing further care then they would have to seek funding from the Health Authority along with all of their services etc which would probably prove to be a nightmare. If you bear in mind that the cost for the 6 hours a week i currently have a P.A for is just over £55 it won't take too much to reach these various levels. What has been decided and indeed what will be put forward for approval at next Tuesday's meeting is a request for an additional 14 hours taking it up to 20 per week in total. The additional hours are officially to be used as follows although as i am responsible for employing my own P.A there is some flexibility. 1 hour a day in the morning for help with washing and dressing, also to make me a snack and a flask for lunch if i will on my own during the day. It was discussed about having someone in over the lunch time but the additional 7 hours a week would take it over the limit i have said. It is also for 1 hour per day in the evening again to help with washing and dressing and generally tucking me in for the night including reading me a bed time story and a nice glass of milky horlicks Mmmmm!!!! i might not suggest the rocking to sleep and the winding though as i can forsee some pretty messy problems there. It looks hopeful that i will get these changes and then it's just a case of getting on with it i guess. It should make some difference i think but we shall have to wait and see.

So as you see, things are moving in the right direction at least, all be it in short jerky movements, but as a certain person would say Onwards & Upwards, is very much the order of the day.

See Ya!!

The Minds Eye!!

You will have to excuse me before i head off on this rant as to be honest I'm not quite too sure where it will lead, but what the heck, life's too short and all that, so here i go.

I've noticed lately that the blog has sort of changed direction, somewhat to do with the what might be seen as positive or negative direction my illness and subsequent treatments and symptoms has taken. Other reasons could be that My friends Peter and Elsbeth's blogs have both featured thoughts on reflection etc and that has started me thinking about what i have been through and more important i guess what sort of person i have become as a result of all this. So this i hope will turn out to be a glimmer of the type of thoughts that i and i guess many others going though similar issues have to deal with, which sadly no one warns you about and you won't find it in any text book. Now i know that i have and still do try and mention the physical aspects/problems i am having to deal with so repeating them all would be a pretty useless exercise. It's more the psychological, emotional thoughts i want to try and get to the bottom of.

I realize that this blog may well go on and on and on and on, a bit like Mrs Doyle again, and as such i may just cut it off in it's prime and return at a later stage to catch up.

So Here Goes!!!!!

i guess it all starts with the initial bombshell. No matter how much you glam it up or play it down for that matter, when you are told you have a critical illness such as in my case Acute Lymphoblastic Leukaemia it is very much a jaw dropping experience. My first reaction was “Oh My God I'm Gonna Die” which sadly the doctor responsible for giving me this great news was not doing or saying anything to the contrary to ease my worries. This then was followed with all sorts of emotional tidal waves. There is the old favorites “Why Me” and “What Have I Done To Deserve This”, which even at times rear their ugly heads today still. There appears to be a sort of thread that runs through all these emotions and that is they are nearly all connected to the feeling of loss/grief and guilt too, which i hope will become clearer later. I found by the very nature of the treatment available to me my independence was being stripped almost right from the start which brings with it a lot of anger i guess you can call it. I, depending how you look at it i guess, was pretty much off on another planet due to a combination of the Illness taking hold and the huge quantities of drugs being pumped into every available orifices and some which were previously unavailable too. OUCH!!! so i was spared some of the initial seriousness. I guess though the seeds were even then being planted that are the emotions i am having to deal with today. Where i think the Loss feeling are there are things like losing Independence. It just tends to start off small with even silly little things like because you might have mouth ulcers or similar, something i know Peter is dealing with at the moment because of the GVHD you cant eat anything comfortably unless its stuff like soup or ice cream, when all you want is nice big juicy bacon sarnie, but the point is YOU DO NOT HAVE THE CHOICE!!! it has been taken away from you by this bloody alien called Leukaemia. This has continued as you can imagine throughout this past 3 years 5 months and 4 days but who's counting?? to varying degree's. Slowly throughout i suppose it has become more long term loss that has become just part of life. General feelings that this illness has slowly and systematically robbed me of pretty much most of my independence with things like, being as my mobility sucks to put it mildly i now have to rely on someone else to help me with basics of life such as dressing and washing, even thinking at times which is scary. The point is that all these things, and i cant emphasize it more strongly have been “TAKEN AWAY” and not actually “GIVEN UP” by me. I think this has been and still is the one emotion that i just have not been able to deal with successfully and as such does cause some problems occasionally with depression etc. i just find it soo hard to come to terms with losing yet more to this bloody thing as to be honest i am scraping the barrel as to what independence i do have left for it to take away from me. Almost all activities if possible at all now that i used to, much like everyone else just take for granted i now have to rely on someone else to either help me to do it or do it for me. I guess i sometimes see it as stripping away my identity too. In that i mean, i have become a “Case” and often a “Number” or if h'm lucky maybe “Both” and no longer John, which as you would think brings with it a whole new load of emotional happenings to add to the party. I have often said that i do not actually recognize myself anymore physically as due to lots of reasons my appearance has changed beyond belief since this started. If i were to put up 2 photo's, sort of a before and after thing you will agree with me that it is not the same person at all. I did for quite some time use this as an opportunity to kind of re-invent myself. Being able to truly i guess make a fresh start. In reality though you are who you are by what you have been through in life and all those memories are as much a part of you as your skin is. So yes you may be able to fool yourself and everyone else for that matter into believing you are someone new but deep down inside you are still the same person you have always been just living a lie i guess. Even if, as i do very often wish i could change the past, what effect would it have on me and would i really want to do it, now I've seen the person i have become now?? A tricky question i think, one which i don't think i could really answer comfortably.

Right I'm going to have a rest for now but i will try and return to this at sometime soon to carry on a little as i think there are still some emotions that i have and am experiencing which haven't got a mention yet.

See Ya!!

Democracy My Arse!!

For those of you who haven’t been off on Mars holidaying, you might have noticed and even , dare I say it? Taken part in the Elections that were held on May 3^rd in Wales, Scotland and England. The Differences between them was that England voted for their Local Councilors, whilst Wales and Scotland both voted on their respective Assemblies. As per usual their was the right old mess in both the collecting and counting of the votes which goes without saying. There were stories of people such as a nice man in Scotland who went into a local Poling Station and smashed up the Metal Box containing all the completed Ballot Papers, resulting in the adjudicators there having to pick them all up from the floor and try and put them in another available box.

My experience of the Welsh election was and is causing some dismay really. We were given 2 Ballot Papers to fill in. One was for the Local Assembly Candidate, who, in my case the winner was Jane Hutt the Labour Candidate who had been the previous AM but only by an 85 vote majority. She only got this after, wait for it……5 RECOUNTS!!! each of which had come up with a vastly different figure. Some were 100s in her favour and others were 100s in closest opponents favour. How can this be?? Just goes to prove how completely inaccurate the whole process is. The other Ballot Paper was for you to state very clearly which Political Party you wanted to lead the assembly. Labour won this vote again continuing on from the last 4 years but this time with a reduced majority of 26 seats out of a possible 60. This is where the lack of democracy comes in, in my opinion. The fact that the public had voted for 26 Labour Assembly Members with their nearest competitor Plaid Cymru getting just 15 and I suppose I shouldn’t leave the others out too, so, Conservative got 12 seats and the Lib Dems got 6. There was also 1 Independent elected too making up the 60. This says to me that the General Public wants Labour to have control over their affairs. In order to have overall control they officially need to have 34 seats so have had to set about trying to do a deal with one or more of the other parties to join forces or maybe even to go ahead without the overall control which is possible. The other more interesting outcome which is very much being talked up at the moment and each day seems to be the way things are going to go, is that the other parties, Tories, PC and Lib Dems join forces and take control of the Government!!!!!!!!!!!!!!!!!!!!! So in effect the public may as well not have bothered voting, as what we want as usual, is going to be completely ignored as they are going to do exactly as they please. Democracy, MY ARSE!!!!! It will be interesting to see the outcome which has to be completed by 29^th May I think it is. No wonder people are so disillusioned with politics in general as they just seem to go about in their own dream world doing just as they please, and that’s just John Thomas my lovely MP. It was nice to see him and all the other representatives who came to canvass for my vote NOT!!!! Not one of them came within a mile of here. Maybe they have read the blog and feel just a little scared, poor mites.

I haven’t even talked about the fiasco in Scotland which appeared to be 10 times more confusing than Wales, having to fill in reams and reams of Ballot Papers. It was a good result though for the people of Scotland in my opinion, the Nationalist winning control, something which has been steadily gaining mass support there for years, helped somewhat by Labours incompetence no doubt.

Ah, shopping later, my favorite occupation. Well that’s not completely accurate. I like food shopping because it’s the anticipation of getting it home and cooking it and of course there’s the chore of eating it too, especially the Bacon sarnies which I manage to force myself to eat.

See Ya!!

Heath Towers Day Trip

Up bright and early, well, early anyway to head off to Heath Towers. First stop was the Dental School then onto the Day Unit for the Immunoglobulins and to see Merlin. Parking as per usual at the Dental School was a nightmare even more so as they have blocked off almost half of their available spaces by having scaffolding up all around the building as they are re-newing the windows. Thankfully Judith was with me so whilst we were parked up in the queue waiting to get into the car park she jumped out and set up my go-cart so that I could get in on time. Unusually I didn’t have to wait for more than about 10 mins before being called in. I wasn’t looking forward to the visit as I was expecting to have 2 teeth pulled out. The registrar I saw explained that this appointment was just a sort of hand over between the Perio department I had been going to and the Oral Surgery department I was visiting today. As such he took a look in my mouth and basically just agreed with what I had told him, that I needed to have 2 teeth out and then 3 needed to be filed down before having a nice new denture fitted. All in all a bloody waste of time. I could have had another couple of hours in bed. They are going to send me an appointment in the post, surprise, surprise!!

On to part 2 then, after stopping for something to eat on the way of course. A rather delicious warm herby sausage baguette. I was a little early, in fact about ½ hour early for my appointment at the day unit but was rather impressed with almost immediately being shown to my home for the next few hours, a chair in Dracula’s Lair as I like to call it. It’s a room with about 8 or so pretty uncomfortable reclining chairs where most of the people there sit around having blood transfusions mostly, being force fed Daytime Telly. I was to be looked after by Jane who is a lovely bubbly nurse but has the tendency to try and do too many things at once and as such it is usually an experience to say the least. So, first things first, trying to get blood from a stone. She set about throwing javelins at my poor hands and arms. The first 3 all ended in complete failure after painfully putting it in then wiggling it around a bit, before eventually blowing the vein completely, causing a rather nice, painful, black bulge under the skin which will make a nice bruise in the morning. After dunking my hand in hot water for 15 mins she tried for the 4th time and managed to get it in all be it very positional as they call it, meaning if you move your hand it stops, which is no fun believe me, at least it’s in though. So 1st of 3 bottles on the go time to watch some Gordon Ramsey Kitchen Nightmares on the Laptop to pass the time. Well it’s better than Miss Marple or whatever it was on the TV. I had a visit from the Wound Nurse about the latest bunch of sores on my legs so it was all change and I was shuffled off into another room so I could be seen on the bed. Another blinking waste of time as when I got there eventually after having to pack up all my stuff and then try and drive the scooter being followed closely by Jane, pushing the drip stand she only needed me to roll up my trouser bottoms, something I could have done sat in the chair. And, you guessed it all the movement had caused the drip to stop . This resulted in about another ½ hour having to cyphen stuff off, pump some fluids in etc, some of which were extremely painful, all as you can guess causing me to get even more wound up by the minute. I had well and truly had enough now and just wanted to pull the bloody drip out and head off home. I find when I get like that, all stressed out my breathing, which was already bad before I had started, gets quite worse and I can find myself extremely short of breath. Ah well back to Gordon for some light hearted entertainment. I was just settling in when Merlin’s secretary arrived to inform me that his lordship will not be able to come down and see me today unless it was life threatening as he was actually in the process of writing up the case for the people in the finance department to fund my treatment for the GVHD in either Birmingham or here and that it needed to be within the next couple of hours. I guess at least he was trying to prove he was doing something about it, but as I was having a bad day my impression was why did he leave it till the last minute to do it?? Still I got to see the ever likeable Registrar, Chris who I haven’t seen for some time.

Finally after 4 ½ hours I managed to get out from there, considerably stressed out and looking forward to getting home and chilling out. As a result of this I fell asleep not long after getting home, managing to catch up I guess on some of the sleep I never got the night before.

Right I’m off to play around with Fedora for a while. Much less stressful.

See Ya!!

Freedom Of Information

After waiting what seems like a lifetime for people like the Local Vale Of Glamorgan Council and the BBC and also the Powers that be at Heath Towers to respond to requests I have made for information under the “Freedom Of Information Act” they have all seemed to reply in the last few days interestingly enough as if they have all been in contact with one another.

I guess the most boring one was from the BBC who I had asked for information regarding what they do to ensure there are adequate provisions made for Disabled people to participate in audiences they may need in both their own and outside broadcast locations. In general their response was pretty predictable and basically told me nothing new and inspiring so was a bit of a waste really.

The next was to the Director responsible for Estate Management at Heath Towers regarding the appalling misuse of 4 of the Disabled Parking Bays to place 1 Porta-cabin and 3 Contractors Vehicles which just happen to be the 4 closest to the one and only entrance into the hospital as well. I finally received a written response from Chief Executive Mr Hugh Ross after numerous threatening emails which just pretty much said that although they agree that there is a huge amount of space available around the hospital grounds that could be used in order to fulfil Health And Safety Requirements they needed to be situated so close to the hospital that they would not have to cross the paths of the General Public. How bloody stupid is that?? They refused to email their response to me so I will have to get around to scanning it and then I will post it with the others.

Then there’s the Councils!!! I had initially written to Cardiff Council following my memorable trip into the town centre on the train the other month to complain about the dreadful paving conditions then followed it up with a Freedom Of Information request asking what they are doing to enforce the responsibilities on local Businesses to comply with the access responsibilities of the Disability Discrimination Act. Also I wanted to know what the figures were for cases of physical injury compensation claims as a result of the paving conditions in Cardiff and whether settled before or after a court hearing. You will see that it appears that they either didn’t read the question right or just don’t want to give me the information. As far as the access issue is concerned you will see that the respondent just goes on and on about the upcoming planning regulation change requiring businesses to supply a statement of their intention to supply access which does nothing to enforce the many many business who are flouting the law right now to do what is required.

So all in all a pretty pointless exercise although I will not let it drop just yet and have responded to each of them in my usual polite manner and requested yet again the information I first asked for although I don’t hold out much hope.

I also have the ongoing saga of the Disabled Facility Grant which is becoming more and more depressing each day but to be honest that is a whole blog on its own so I may get round to it on the weekend.

I’m off to see Merlin tomorrow and to have my Immunoglobulins. Sadly though I have an appointment at the Dental School there first to have two more teeth out which I really enjoy NOT!! I suppose the good thing is I might get to have a bit of a sleep whilst the Immunoglobulins are going through over about 3 hours, we’ll see!!

I will have to work out now how I can post their responses to the blog so you van see what rubbish they have been saying.

See Ya!!

Another Day In My Life!!

Well as the heading suggests, it has been just another day in my life. I spent the day at “New Horizons” in Barry which is a Day Centre for Physically Disabled People. My social worker had mentioned it some time ago as she felt it might help to integrate with other people in a similar position to me, she must be brave letting me loose on the poor old people there, what was she thinking?? Anyway I went a few weeks ago with Judith to meet with some of the staff and have a general nose around to see what was on offer and after that it was suggested I visit for the day to get a real picture of things. I think the swaying decision mind you was when they mentioned that they provide good “Home Cooked” food and at such a low price too £1.85 including all the Coffee’s during the day too. I met up with Sue who I think I’m right in saying is the Manager who is lovely and she set about introducing me to everyone. I must just point out straight away though to those of you that have dropped in to see what it is all about, as I couldn’t miss an opportunity to publicise my blog could I? I am dreadful with remembering names so the chances I will mention you by such are pretty slim. This however will not last as everyone gets a mention sooner or later on here as the other poor devils will tell you. I felt like a little boy on his first day in high school, in a strange area where I didn’t know anyone, but all the staff and clients made me feel really welcome and spent lots of time getting to know me. I seemed to sort of hit it off with another guy called John who even I can manage to remember his name ha ha!! and spent a lot of time putting the world to rights which as you know is one of my favourite hobbies next to harassing MP’s and Consultants, Social Services, Local Councils etc etc etc. There was a number of activities on the menu for the day such as Relaxation Classes and Massage and a sort of Keep Fit and also Bingo in the afternoon but I decided that I would sort of just chill out and generally try to get to know people a little which was really useful. Dinner was gorgeous. I had a lovely piece of Ham and Mushroom Quiche and lots of nice salad made by the resident Nigella Lawson called Debbie and look forward to many a hearty meal to come in the future. The plan at the moment is for me to try and go one day a week although things may change I guess in the future depending on needs and available space I guess.

Health wise things are changing somewhat at the moment. My chest is generally behaving as badly as normal for me although it is being kept at bay by various pills and potions and some heavy will power but I am becoming increasingly worried about the skin problems. My legs are very rapidly getting a whole lot tighter and quite painful at times. There are a number of areas that are now very distinctive rings of tightness round them sort of like as if you put a 1 inch wide elastic band around your leg if you see what I mean. This is causing some pretty nasty swelling in my ankles especially my right foot somewhat caused by the water retention from taking the steroids. Both my legs are now so tight and the skin is so thin due to the GVHD that I am discovering more and more burst blister like things which eventually turn into ulcers and then pretty much do not heal because of the drug interactions yet again. It is getting to the point that I am going to be permanently in a wheelchair and not able to do even the smallest of walk, some 6ft which I have been managing to do until recently. The other main concern I have too is how long before my other enjoyment in life “Driving” is taken away from me too by this bloody illness. I will have no choice in the end because even I am not stupid enough to put other people’s lives let alone my own at risk by driving when I am not capable off doing so.

I am hopefully going to get some news on the Treatment of the GVHD when I go and see Merlin on Friday but then again I have learnt not to expect anything anymore that way I am not so disappointed when things don’t materialise. That’s sad having to think like that I know but after having so so so many let downs there is no other alternative.

Right I’m off to install this new copy of Fedora 6 to have a play around with. It’s all Peter’s fault for putting the thought in my mind. Okay fingers crossed.

See Ya!!

Still Here!!

Yep, despite the lack of a blog for a few days I am still here and constantly on the lookout for valuable information to share with you which might get overlooked by the “Mass Media”. Things like, ”Why is it that the Leader of the Liberal democrats, Sir MENZIES Campbell, as in the huge High Street Shop with a similar name John Menzies, called anything but that. He is referred to as Ming or Minges or even as once heard Minging?? WHY???? Doesn’t he like his name or what??? Seems rather crazy to me, what do you think?

Here’s another good one too for all you Fellow Computer Nerds like myself who spend far too long sat in front of that pretty little screen. Where in the world will you find the fastest wireless network/internet connection? Well, I guess there are the obvious places like the home of the chip and I don’t mean the fried kind either although I have managed to do just that a few times over the years, Japan. Maybe it’s in Bill Gates; back yard, The United States although he seems to be not there very much these days choosing to spend most of it in far flung tropical destinations. Neither of which are remotely close. It is, of all places South Africa, still considered by many to be a somewhat 3^rd world country. The wireless technology known as HSDPA - High Speed Downlink Packet Access is in a place called Alexandra and it is somewhat a modern day version of Robin Hood, stealing from the rich to give to the poor. It is in a dreadfully poor district right next door to one of the wealthiest. Some bright young entrepreneur has tapped into this high speed connection and it is then beamed around the district by using things like “Tin Cantenna’s”, yep they are normal wireless antenna’s placed inside a Tin Can and used to condense the signal to a much more powerful beam which can be sent over further distances. It truly is an amazing thing to see and also the fact that all these poor children etc have this technology at their finger tips to maybe help give them the boost they need climb from poverty. The programme was made by the BBC “Click” team and you can find all the information on it HERE including the ability to download a podcast of the programme which is well worth a look. One other nerdy things too is that I noticed that they are using a Linux Operating System in the shape of “Ubuntu” which is an excellent FREE OS that is the closest to being able to knock Microsoft from it’s nice comfy extortionate perch.

They have the ability also to solve a few issues with lack of teachers. There is one teacher based in one location who then wirelessly teaches 3 different schools miles and miles apart in “Real Time”. Even including interactive White Boards in the schools etc it’s all pretty inspiring stuff.

I urge you to take a look at what good can come out of the Web/Internet etc instead of what seems to be a constant negative press that everyone is out to scam you and steal your identity and its all going to end in tears.

Okay I’m off to make the first Bacon Sarnie of the weekend and most definitely not the last one either.

See Ya!!

PHEW!!

As the picture shows we went to a 21^st birthday party last night. It was for Tara number 1 daughter. It had been planned over the last year and was to be a surprise. She hates surprises which makes it all the more fun. It was all arranged with military precision and as their were so many people involved in getting it all together there was every likelihood that someone would slip up, not least of all as the party was in the local golf club where she works behind the bar. Judith did a splendid job of arranging it all and making sure all was going according to plan and I had the easy job of just keeping my mouth shut and not letting on, a pretty hard job for me as you all know, shutting up!!! After being chaperoned all day by a couple of her friends and after nagging at them “When are we going, when are we going????”, She thought that she along with a load of her friends were getting in a Limo and going to Swansea for a nights dancing and generally making fools of themselves and that they were all meeting up at the golf club and going from there. They managed to keep her away for an extra few minutes till a couple more arrived then they set off. When she arrived at the club she was immediately spotted and followed on the CCTV so we all knew the exact minute she would walk in. They had put up a load of Happy Anniversary banners outside and in the entrance to add to the surprise then in she came to a resounding “SURPRISE” from the waiting crowd. For once in her life she was actually lost for words and had to in fact pick her jaw up from the floor. I was greeted by “You sneaky bugger why didn’t you let on?” ha ha ha!! The place was packed to the rafters with family and friends and the odd drunk we dragged in off the street. It was nice to meet up with a lot of those that I haven’t seen for quite some time. My Favourite Cousin Jacqueline and Stuart and Little Jessica, though she will kill me for calling her little as she is nearly 18 after all. My little Sis Ruth and her hubby John were there too which for those of you that know her is always an experience. She has enough energy to power the national grid for a year, I don’t know where she gets it from. It was a shame that Mum and Dad and Adrian couldn’t make it as that would have been the icing on the cake, but Mum is nowhere near safe to be let loose on the general public yet!! Only kidding Mum, you know I loves you really!!! It was a great night and by the seem of it everyone had a good time not least of all Tara who seemed to get more lively as the night went on, maybe something to do with the amount of alcohol she was chucking down her throat. Not a bit like her Dad, I just fall asleep when I’ve had a drink. I surprised myself really and managed to stay nearly till the end. I was thinking that I might manage a couple of hours before I was knackered nut managed about 4 surprisingly. It was the first time we had left Puppy at home on his own too and were dreading what we were going to come home too. When we got in and called him he wasn’t anywhere to be seen or heard. Then I heard a thud, as he jumped of the bed upstairs. He has never been upstairs before as they must look like Mount Everest to him. He wouldn’t come down on his own though and Judith had to carry him down. That was it then, ull of life and demanding play for a couple of hours, pay back for leaving him alone I recon as all I wanted was to go to sleep. It looks like he had been hunting around everywhere as things were knocked off places and moved on the floor etc but no accidents though which is a good thing. So,making more of a fuss of him today to make up for it.

Judith has just gone over the club to give a hand in getting the place back to normal as every inch of wall was covered with either blown up photo’s or banners etc etc it did look superb. I am trying to put up a load of photo’s and some of Puppy too later today when I can work out the best way of doing it so by tomorrow they should be available, then I will have to grab some more from some of the others as, silly bugger here forgot to check the batteries and they run out after a couple of minutes.

Okay, PLAY TIME!!! Here Boy!!!!!

See Ya!!

Morning All

Well we got round to taking little Puppy for a short back and sides and a real good pamper too. He waddled his way in, all dirty with long nails and scruffy hair. When we arrived back in about 3 hours or so he looked like a different dog all together. My first impression was that he looked like a little boy on his first day in junior school. Wearing his starched new uniform for the first time and hair all neatly trimmed it was a picture. The Charming lady at “Canine Clippers” In Penarth, where we had taken him said that he was the ideal customer. He just lie back and let them get on with it and enjoyed the experience. Since coming home he is a different dog. He’s even cuter if it’s possible and he knows it too by the way he’s strutting around. We are pleased too that we have had no sign at all that he is missing his brother although it is early days still and still might happen. One of the hardest things is to get him to eat as he is so used to being pushed out the way at feeding time that he just won’t eat a lot of the time, something that he needs really to put on some weight. Still, he will eat when he is hungry I guess.

I appear to still have this dodgy chest at the moment and yesterday I started to have a few sniffles too although in saying that I don’t have a runny nose this morning YET!! My rattle chest has been up and down. That sounds funny doesn’t it, of course my bloody chest will be going up and down, well I hope it is or else I’m in trouble. One moment it’s rattling like a rattle snake, threatening to chuck up all sorts of toxic stuff then it just seems to dry up the next. As usual no amount of attempting to clear it by coughing etc seems to make any difference either. It sort of sounds like I am snoring continually which can get annoying. At least my temperature is staying down so I am at least managing to stay out of Heath Towers for the time being. I noticed the other day too, that I haven’t been for stay at Heath Towers for about 5 ½ months now which is pretty damn amazing for me. I think before I started to have the Immunoglobulins around the time I left there the last time, the longest I had been “At Home” was around 2 months and sometimes, as you will remember it was more like 2 or 3 weeks between expeditions and that was after spending on average 3 weeks being poked and prodded and given all sorts of nasty stuff and that’s just the food!!!! Never mind the toxic concoctions that Merlin had given me, which incidentally all seemed to include Gnat’s Sweat, an acquired taste I must admit. Not a spot on the Bacon Sarnie’s though. Is this a sign that things are on the up? Well after having so many set backs in the past it is quite difficult to think along them lines and even if things are getting somewhat better in some departments there are so many things that all contribute to my overall failing health that the outlook is very much of the same with the usual up’s and down’s. This is my new life now and I had better get used to it, not that it will stop me fighting though.

Okay I’m off catch up on the shambles that is called the Welsh Assembly Elections. I guess it could be worse, I could be living in Scotland whose election results are in a right mess.

See Ya!!