It’s Me Again!!

Hi one and all. Hope you haven’t missed me too much?? I do have a genuine reason for not blogging for a while and before you all start howling it’s not the Lazyitus returning again but instead a really annoying eye problem. As some may remember I mentioned that the good old GVHD had managed to attack my eyes along with all the other places it’s managed to get too. This has been causing a lot of pain and discomfort for a while as they become very very dry. Sometimes the eye drops help but not always. For the last few weeks however I have noticed that whenever I try to look at the computer screen or even the prog information on the TV after one or two minutes my eyes become extremely painful. No amount of eye drops has stopped the pain either. This has and still is, as I haven’t managed to get to the eye clinic yet to get it looked at, a right pain in the you know what as I spend most of my time on the computer.

As far as the rest of my aches and woes are concerned it’s pretty much business as usual. The odd glimmer of a chest infection looming ready to pounce at any given notice and the Boa Constrictor I have wrapped around my body trying its best to strangle what life there is left from me, oh yes, and the depression I seem to have been up and down with of late. As I have mentioned on other blogs the depression is very often triggered by the state of my health and as things haven’t been too good it just proves my point really.

On the car front it looks like there is a chance I may have my new one in about a week or so now, thanks to a lot of help from Dave Bushby from Motorbilty who has been on my case for me all along. When I finally get my hands on the new one I will have to write a separate blog on all the problems I have had getting this thing but in the meantime if anyone reading this is thinking about using a company based in Newcastle called “Automotive Group” DONT!!!!!!

I have managed to write this blog off and on over a weekend away at Marie Curie’s Holme Towers Hospice in Penarth where I have been for a weekends respite whilst Jude has dragged Tara and Kya and a load of other hormonal women to Butlins in Minehead for the weekend. This too will need a blog all of its own to give you some details but overall I guess it wasn’t the best of experiences but still I needed to know.

Right my eyes just can’t take any more now so I am going to have to go. Maybe if I dictated I could get someone to write a few blogs for me until I get my eyes sorted that would make it easier and probably for you lot, a lot shorter too as I tend to drift off at times as you all know.

See Ya!!

P.S I have an update on the Car and it's being delivered on Thursday so i would appreciate it if you all stay off the road then and tell all your freinds too!!

Self Punishment

Well at last after much speculation Tim Henman has announced his expected retirement. Now I guess I could not be described as a sports addict at all, actually I would strongly deny any such association vehemently, but it makes me wonder at times like this how we in this country set our hopes of sporting success so low, that we then are happy with any little win here or there. Here we have a tennis player who no doubt has some talent, but he is being made out to be some great player along the lines of the great Fred Perry which I find quite amusing as he has never won a “Grand Slam” but he has made it to 6 or 7 Semi Finals!! He hasn’t even managed to make it to a Final yet he is the best we have to offer?? Could you see the Americans putting up with the likes of Serena or Venus Williams just making it to the Semi Finals?? I think not!! I don’t want to make a big issue out of it but I suppose seeing as the government are about to waste, I mean spend a load of mine and yours hard earned cash on staging the debacle known as “The Olympics” I see us yet again making a damn good laughing stock out of ourselves yet again, but this time we will be skint in the process.

Okay on a more cheery note, I’ve been out and about over the last weekend and since too. Saturday I dragged my sister into Cardiff for a bit of retail therapy and a nice slap up breakfast of course, well it seemed a waste in not trying out the local fayre. It proved to be more bad than good though as we got well and truly caught in the rain which resulted in a severely bad chest for day afterwards, in fact it still is not right now although it is getting better. The weekend saw me struggling quite a lot just to get enough oxygen in to keep me going and to be honest at times I thought I was rapidly heading, with the blue light disco on the roof to a stay at Heath Towers but thankfully managed to stay put and resist the temptation. I think the thought of all that Savoury Mince, Bran Flakes etc that they pass off as food there gave me the inspiration needed to get my arse in gear and get through it. I did as a result of this take it easy for a day or 2 but there is no tying down Jonny when the sun comes out. I’ve had a few days out shopping etc and generally out and about seeing how many people I can annoy by taking up their space on the pavement with my Wheelchair. I find it amusing to see some people’s faces when they walk straight in front of me until they realise, at least most of them do anyhow, that I am not going to move my joystick for anyone to get out of their way, it’s a case of shock and horror and pain too if they’ve not managed to avoid the nice heavily clad metal front on the wheelchair. Back into Day Care tomorrow too as I had to miss Tuesdays session so a chance to catch up on the goss.

I’ve got a few outings planned this weekend too which I’m looking forward to as well. Saturday I’m off to a local Village Show, full of the usual Sponge Cakes, and Runner Beans and Marrows of alien proportions and let’s not forget the Dry Flower Arrangements too. Sunday if a little different in that I am going to drag my poor old sister out again, this time into a fabulous Farmers Market in Cardiff which is excellent you will find details of it here if you are ever in the area looking for something to do. Hopefully we will get to go for a walk around down in “The Bay” or if like me having being brought up not far from there, The Docks.

An update on the building/grant work too. I had a phone call this morning from the council explaining that I had to now go ahead and employ an architect and after giving me a list of ones they have used in the past I did just that and he is coming out next Tuesday to start the ball rolling. So more progress again which can only be a good thing I guess, I HOPE!!!

See Ya!!

A Lesson Learnt

I have learnt a valuable lesson this week which is closely connected the reason I haven’t blogged all week, tut tut naughty boy jonny!!! I had a bit of a disaster with the power cable for the trusty old Laptop. Well to be honest my beloved daughter decided to see how long she could stretch the non stretchy cable before something give in and eventually it did. Thankfully it didn’t damage to Laptop at all just completely knackered the power lead ending up costing me £23 blinking robbery to replace, no pocket money for a year for her, oh yeah, I haven’t given her any pocket money for years, maybe I ought to keep quiet on that one!! Well, this is where the problems started. There wasn’t much power left in the batteries as I haven’t charged it for a while so when she finished what she was doing on it, using up the remaining battery power off it went till I could get the replacement. Never mind I thought, I will just have to use one of the other 3 computers set up around the place, more so the one I have connected up to 32” Widescreen LCD TV in front of me. Have you ever tried playing games on one of these, its soooo much better!!! So I switched it on as I needed to write a few emails etc and realised I had to go through all the setting up process as I hadn’t ever done it on this computer. Right then, where did I put them details and passwords etc?? Then the penny dropped. Noooooooooooooooooooo!!!!!!!!!!!! All my passwords for everything I do in cyber space is sitting nice and quietly in a file on my Laptop and I have no way of getting to it. Of course Mr Organised here had kept putting off backing up this sort of thing too so I was left high and dry till the new power lead made its way to me on Friday. So my friends the lesson today is “back up, Back Up, BACK UP”

Anyway, catch up time. I had an extremely busy week. As Judith was away for the week with the cadets in Wittering I had been planning the week military fashion for some time and it all pretty much went according to plan. The pa’s both did extra hours, even some unpaid too, but then she is my sister and she loves me. My family have been great and have been around most of the week too helping out where they could. I have sampled many cuisines on offer around the locality although I would say none of them have even come close to my delicious speciality Bacon Sandwich but the sampling was fun. The hire car has been well and truly christened. I will say that the weather this week has been pretty astounding too. It’s been sun sun sun all the way mostly which has enabled me to get out and about a lot more. It’s also made my chest behave itself a bit too, so much so that I haven’t needed as much oxygen this week which is a good sign. I’ve been to “Day Care” as usual this week on the welfare bus Tuesday but they sent a taxi for me Friday in the shape of a properly converted minibus with all the right equipment, at least I thought they did!! It didn’t start of well and it actually just kept getting worse and worse. First things first up the ramp which was as steep as the north face of Everest, thankfully my pa was standing behind me because at the top of the ramp my front wheels were 2 inches of the floor and I was heading for a back flip till she grabbed the handles. Phew, that was close. Well into position to be strapped down. Now for those of you who are not used to wheelchair transportation there are these straps they tie around or clip etc to the wheelchair frame which hold you down firmly to stop you moving around and also you wear a harness or at least a seatbelt of sorts, it is the law after all. There are 4 straps in all, one in each corner. Well because the driver had come totally un prepared he only put 2 straps on me, front right and rear left which mean there was nothing stopping me tipping forward to the left and backwards to the right, pretty frightening. To top it all there were no harnesses and not even any seat belts to out on. I should have got off there and then I know but for some reason I decided not to. The driver obviously knew he had messed up as he drove like a funeral procession all the way to pick up the next client and onto the centre, even so watching the back of the wheelchair in front of me moving around because he had the same set up as me was still frightening. I’d like to point out too that there was no escort on the bus either so if any of us decided to tip over nothing could have been done. We arrived at the next client to pick up and this poor bugger only had one strap on because that was all that was left and it was actually the wrong type for his chair anyhow so it was useless. After a harrowing journey we finally arrived at the day centre. I explained to the driver that he will have to put the wheelchair in free wheel for me and pull me off as I was not prepared to go down backwards when I couldn’t even see the ramp and how steep it was. He made me feel like a right baby. “What’s wrong with you man it’s only a little slope, come on, get on with it” he said. If I had the energy I would have got up and plonked one on his nose as I had lost it by now. When I downright refused to get off the bus he was forced into doing as I had asked and even he nearly led me off the edge of the ramp. So it sort of put a dampener on the day really. After a lot of complaining and phone calls from the staff at the centre who were great they apologised and said it will be different next time etc etc. Well when it was time to go back home it was different. We each had 4 straps on, there was a lift to get on and off and there was an escort in the back too but sadly NO HARNESSES OR SEATBELTS!!

Okay that’s enough for now. I will have to update you later about everything else that happened this week as this is heading for a full scale novel ha ha ha!!

See Ya!!

Jonny5 Is Alive!!!!!!!!

Well after numerous days, weeks of sweat and tears and countless phone calls, on my behalf anyhow as everyone else seemed to forget to ring me back constantly my new mode of transport which I refer to as my “Cripple Wagon” as let’s face it there is no hiding the fact that its sole purpose is to ferry around cripples such as myself, with its bright yellow ramp poking it’s head up in the rear windows of the door and the other small giveaway is the dude sat there in their wheelchair often with a look of shear fright on their face having just been on a ride equivalent to the most frightening roller coaster ride on the planet, often I find too that the driver, Nigel Mansell, has this wicked grin on his face. It is only a hire car for now till mine is ready in around 8 weeks or so but it will be the same, just newer although there are a few little changes internally. Judith has packed the camera away to take with her as she heads off and leaves me in the somewhat dubious hands of family and friends as she plays soldiers for a week with her group of Air Cadets somewhere up north. Just follow the rain clouds and you will find it!! So sadly no piccies of the new motor yet but if you just can’t wait it is one of THESE, only joking, it’s one of THESE. The poor buggers delivering it down from Newcastle to me in St Athan picked the worst day to do it too as the Motorway (M4) was closed from j24 – j28 from about 2.30am to mid afternoon causing tail backs reported to be around 15 miles. It’s a hell of a trip on a good day around 350 miles, 6 hours or so, but they in fact set off at 9.30pm Wednesday night and arrived here at 12.30 lunchtime yesterday. So I am back on the road again and once more looking for some victims to inflict myself on, so stock up on the bacon peeps, I may just pop in to sample some soon. Wait, wait, hold on, why are you all running away so fast?? Was it something I said??

I’ve also had another visit from the delightful OT, Sue this week and she brought a nice chap from the grants department with her to pick his brains about this extension work. She also brought me some ramps so that I can get out a lot easier now and don’t have to rely on Judith having to slot together this jigsaw of bits and pieces of wood to do so. My Daddy will be building me a couple of temporary threshold ramps when he comes up with Mother on Saturday so all will be batter then. Anyway back to delightful Sue. After a lot of wandering around measuring everything in sight including “Puppy”, and a lot of head scratching it looks like the work will go ahead. There is no room in the house as it is to create a bedroom and bathroom for me so they will have to build an extension. It will need to be properly planned and fitted of course with things like Ceiling Hoist, Walk In/Sit Up type bath, Raised toilet etc etc. As you all know by now I have this weird obsession with bacon sarnies and all other cooking to be honest but the kitchen as it is, is not safe or at all practical for me to work in let alone even get out there, so they will adapt this as part of the works too which will make so much difference and help to yet again give me back more independence. They were saying that there is an overall budget for the complete works of £30,000, (£25,000 in England) for the D.F.G and that building the extension alone will cost more than that, which means they have to go to further committee’s panels etc to justify the extra expense but to be truthful they have seen only too well for themselves the real need for me to have this work done, if, for no other reason than to give me back SOME quality of life and dignity. So it is still some way off actually having it done but I feel we are a lot nearer the light at the end of the tunnel at last and things are moving.

Right then I’m off to continue to plan military operations for next week as in what pa or family member or poor innocent guy walking past outside at the time is doing what for me all week, so headache coming on later I think.

See Ya!!

Bring Me Sunshine!!

In the words of the great double act Morecombe and Wise indeed “Bring Me Sunshine” as all this wet, changeable weather is playing havoc with my ability to breathe. In saying that too hot is not ideal either but it seems to be a whole lot better than when it’s damp.

I won’t apologise as I always seem to do for not blogging for a while because I haven’t even turned on the computer much only for the essential stuff. It seems that all my attention has been directed to staving off this blinking chest infection I have had for a while and breathing of course. I have had to spend a fair amount of time trying to sort out this new car too which although tricky and time consuming the outcome is good. I was rather concerned that as my new car would not be ready for around 8-10 weeks I would end up being unable to get out for some time as getting into and out of my present beauty is now proving almost impossible. After a lot of consultation and pleading and begging and endless phone calls I have managed to get the company, Automotive Group Ltd who are providing my new car to come and collect my present car and provide me with a hire vehicle adapted the same as my new one will be until mine is ready and what’s best of all is that Motorbilty will continue to pay for it and it should be here this week!!! So Jonny5 will be on the move again at last, LOOK OUT!!!

The other bit of I guess, “Big News” this week is the eventual OT Assessment for the grant work etc which was on Wednesday. It was quite fruitful and also a big help in the fact that at last things were actually moving. There were and in fact still are a few stumbling blocks to overcome but it looks highly likely that things will go ahead in some form or another. They of course have to firstly look into whether the house can be adapted as it is without the extension but there is no way at all. We may have problems with the water/drainage being the wrong end of the house. There are some issues over having a Bath or Shower and what type etc but nothing that I don’t think we can’t agree on eventually. I have asked to have to kitchen converted in some way to help me to safely work/cook out there as it is very dangerous at times at the moment. On a more immediate note the OT Sue Collins will be coming back next Wednesday with a couple of portable ramps for me to use to get out of the house etc until they come to build the permanent one later on and she will be bringing one of the Grants Officers with her who is a Surveyor and will have more of an idea what can and can’t be done. So after all this time things are starting to move in the right direction.

On a different tangent now, “My Health” this chest infection is continuing on regardless of any intervention on my part so when visiting Merlin at Heath Towers Friday I have got him to prescribe a different anti biotic. For those keeping record it is Augmentin also known as Co-Amoxiclav. I have taken this in the past, hell I have taken pretty much every anti biotic known to man before, with some success and some failures also but hopefully the former in this case, so again no Harveys for me for a while, drat drat and double drat!! Merlin put me on a course of Methotrxate when I saw him about 5 weeks ago to try and stop the skin gvhd from progressing further up my chest which it has been doing and it seems to have worked somewhat too, which is interesting for a number of reasons, not least of which the fact that it does somewhat prove that the skin condition is reversible and therefore this treatment in Birmingham etc may just help. A bit of positive news you will all no doubt agree. So come on then Merlin pull you’re bloody finger out and get it sorted because the clocks ticking and the meters running!!!!! Well carrying on the health route, whilst I was at Heath Towers Friday and sitting talking to Merlin actually, my breathing all of a sudden became very difficult and my chest was getting tighter and tighter and in fact had to get Judith to quickly get out my Oxygen before I flaked out. After a short while and a good old blast of oxygen I was fine although rather concerned as to what had happened. I had just moved around a little I guess after sitting still for about 3 ½ hours having my immnoglobulins and also I was sitting forward which doesn’t help as it doesn’t allow me to breathe as well. After managing to convince the staff there I would okay to get home off we headed. The journey home was fine but later on after trying to move about a bit it happened again. It soon calmed down after another shot of oxygen so after that I keep the oxygen on all night and I was fine. I did have to get Judith to stay with me all night on the chair as I was a bit scared things might get worse and even now after a day or so it still worries me a little. I had to get my Little Sis to come and sit with me yesterday whilst Judith went shopping too which was nice. I don’t help myself when this type of thing happens mind you, as all the experts will tell you, the last thing you want to do is panic as it makes it worse, so what do I always do??? You got it!! Well I suppose I will just have to keep an eye on it for now and see what happens, but in the meantime make sure there is lots of oxygen around.

See Ya!!

Yep I think I’m still here!!

Well, I just realised that I have not been keeping the blog up to date. Especially as a few of the recent posts have shed a somewhat, although accurate derivation in my condition etc, so for those that have been Emailing, to see if all was well and if they could be any help, of which I think I have managed to respond to all of you, thanks a million for all your kind words and support, I do appreciate it and it also does help immensely at times like recently when things are, well let’s just say difficult.

Jeeez has it really been a week?? Sorry!! Okay on to the fun stuff now, well, maybe, let’s just see?? Things have been very much moving on in the direction that life seems to now be going, with a few exceptions of course else life would be such a bore. I have managed to pick up a bit of a chest infection (for a change). It’s a bit of weird one for me in that it has been getting better then worse, then better then worse for a few days now despite taking anti-biotics. Some days it is brilliant and appears to be completely gone then others are pretty bad and result in uncontrollable coughing fits all day. No rise in temperature though which is a good sign especially for all the nurses on C1 at Heath Towers who I guess right now are reading this thinking, “Oh No!!!!, he’s coming to stay”. Well let me assure you I am trying my best NOT TO come in and grace you with my presence for while, if that’s okay by you?? It has made things a little strained at times I guess in that some of the things I have been saying recently about regaining some control have gone out the window a little I that I have not wanted to get out and about much apart from things like the Day Centre on Tuesday, which interestingly was a great chance to have a long chat with my “Key Worker” ( although I haven’t quite worked out yet what she does with all these keys) Louise, about a rather interesting training course she has been on recently which was all about coping with the emotional side of both , being diagnosed and living/dying with a terminal illness. There has been a recent extremely successful pilot scheme in one of the neighbouring Health Trusts that has included automatic, immediate referral to a Psychologist at the time of diagnosis which I know personally would have made such a difference to me and would have made things a lot easier to cope with right from the start, instead of struggling on, trying to find this sort of support myself which, in a lot of ways, actually added to the emotional problems as it was quite frustrating setting things up. So hopefully this will be taken on board elsewhere as from the little I have discussed up till now with Louise it appears to be an innovative approach that works. I will try and get some more info from her when I see her again next week and I’ll post a few links to the sorts of things they are attempting to do etc in case anyone wants to know more.

I don’t know. Why do the blogs seem to just go on forever, with page after page? I guess at times there is a lot to tell you, but I will have to try and find some way of condensing them a little, even to help my mother out a little as I know she prints them all out and she is now having to think about having an extension built to store all the many volumes of previous posts, let alone the destruction of the rain forests to provide all the paper ha ha ha!!

Only one more bit of “Breaking News” of which I will go into more detail next time and that was a brilliant day out yesterday at the “Mobility Roadshow” at Kemble Airfield, which was amazingly HUGE and crammed pack full of every conceivable vehicle, scooter, motor home including one Winnebago which was simply awesome and a mere snip at £139,000, so more about this lot later including a few piccies of the new car I am getting.

See Ya!!

What A Difference

What a difference these last few days have been, almost like a completely positive experience, not without the odd fall back or two though to keep me on the straight and narrow. I have continued on from the last blog really and kept trying, rather successfully too, to live for today and attempt to re-gain some control over my life.

I guess the positive input I have been getting from family and friends has had an impact too as they are all behind me in this new approach even if it does mean in some of the cases that they are making more work for themselves, but they loves me I know!!!!! I’ve managed to get out and about a little as well as entertaining at home too. I had a visit the other day from Fav Cous and the queen of the old time music hall days, Aunty Josie and Craig and Jessica who really can no longer be described as kids as they are bigger than me now. They come bearing gifts of Frankincense and Myrrh, well a nice warm Bloomer Loaf and some Juicy Bacon, for my Birthday which I can tell you has been going down a treat since. It was nice to see them all as we don’t meet up that often. Mum and Dad have been spoiling me too and have been up a few times. Even coming up to cook me my tea one day and Dad has done a grand job at fixing my back gate for me. She also brought my prezzy down which turned out to be a Bread maker which just happened to be exactly the same one Judith had bought me too apart from the colour ha ha ha. Maybe I will have to increase my bacon sarnie intake to use up all the extra bread.

I’ve noticed too that the work to put slopping curbs around the estate didn’t in fact start on Monday as was promised but after a few phone calls to investigate and having got a huge apology they have started the work today which is good and should make a difference.

“BREAKING NEWS” I have just come off the phone from the Occupation Therapist. The assessment that most of you will know has been the thorn in my side all this time and has resulted in all the various people fighting on my behalf is actually going to go ahead on 25^th July YIPEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE!!!!!!!!!!!! The lovely and really helpful OT that I had 2 years ago has just returned from maternity leave and has been handed my case. I remember she was so helpful back then and really did attempt to move mountains for me so I am hopeful of some movement at long last. I will keep you all informed of what happens. I did say I will give her a big kiss when she comes but I’m rather worried now that I might have put her off coming???

I’m off to celebrate with a nice cold orange juice with maybe a little something slipped in if I can find where they have hidden it all.....

See Ya!!

I Could Get Used To This!!

Surprisingly I’ve had a really good couple of days. When I say good I don’t mean it as in the sense of what most people might associate it with such you know that feeling you get when you have come back from a long walk in the countryside admiring the beauty of nature, when your legs are aching because you walked a bit too far but it doesn’t come into it at all and you feel like this glow all over and a sort of sense of satisfaction. Well that’s the feeling I’m having at the moment.

My breathing has been somewhat under control although I guess it hasn’t changed a great deal medically just an emotional thing. I have felt a lot happier in myself and wanting to get out and as I have mentioned in the last few posts actually “Live My Life”. After what seems like a lifetime of obviously not doing this it is a bit of a novelty I guess but having been enjoying it so much it will hopefully continue on. I have started to ask for help a whole lot more too and not attempt to kill myself and in a strange way I am enjoying that now. Doesn’t everyone want to be waited on hand and foot after all if their honest and I suppose I am just taking it one step further. Yes, I have lost the choice aspect of it in some ways but I have gained back some of the control side of things too. The choice is still there too just maybe a different one that’s all.

As a result of this new found approach I have started to return to doing a few things that I used to do a while back such as cooking a lot more. Nothing too adventurous, things like the Bacon Sarnies which goes without question but I have also done what I think is actually my first attempt at a Caramelised Onion and Mushroom and Bacon Quiche which was divine and I also made a couple of Seafood Pies topped with Parmesan Mashed Potatoes which were equally as nice, in fact I’m going to have the last one for lunch later on. It’s the good old favourite, Liver, Bacon, Mushrooms, Onion and Gravy for tea later on which I actually adore.

I also noticed when we went out on Wednesday that the slopping curbs that I had been promised would be done around here by the end of last week had still not been done. So I rang the director and was ready for a fight. To my surprise he stopped me in my tracks. He was saying, after passing through the area the other and noticing this himself he was furious and got straight onto it. As a result they are doing them on Monday and Tuesday next week and he has apologised profusely.

I had a visit to the Dermatology department yesterday too which although I knew was going to be a bit of a waste as there is not a lot that can do for me as in treatments etc except to say carry on what you are doing, I thought that I would at least be able to get the consultant to write a letter in support of financing this Extracorporeal treatment which he is all too pleased to do for me. I’m not expecting that he has any more weight in this than probably the cleaner who I always see moving the mop around in exactly the same spot in exactly the same corridor at Heath Towers every time I go there. I think she might be trying to dig a tunnel out of there maybe??

As part of this new era I have decided too that unfortunately the car is going to have to go, well get changed anyhow. I am finding it now, quite hard to get in and out apart from the fact I haven’t been able to drive it for some months now as I am no longer safe I guess. Some people may say mind you that I never was safe in the first place. I rang Motorbility to enquire what the implications would be as I still have 2 years to run on this contract and they were wonderful. I can change it no problem at all. There is a small penalty charge of £100 but I found out that the £500 deposit we paid when we got the car is refundable pro rata and as such they will just take it out of this and I will get what’s left back to spend on me!!!!! Now where did I put that list???? I didn’t waste any time and got straight on the web and started looking for me new motor. There are loads to choose from. I need a vehicle which is Wheelchair Accessible and also has ample head room inside as some of these vehicles seem to be very cramped. I don’t particularly want to spend any money on a deposit or else I will not get to buy any prezzy’s for me. I have settled for this one HERE. It is the only one that I can find that has a high roof as standard anyhow and the view from the wheelchair and overall space looks good. It should make a big difference all round not least of all for Judith or whoever is with me who will no longer have to lift the scooter in and out and set it up for me. There’s always the fact that I get in such a mess just getting to the car and then getting in and out. All that will change now, well as soon as I can try and get my Dad to come and fix my back gate and build me a bit of a ramp down from the decking outside the Lounge French Doors. That way I can just drive straight from my armchair around the house and up the ramp into the back of the car and all without the need for pit stops and tyre changes too.

Okay I had better get up and pop some pills now I think as no one else seems to want to take them for me, spitefull buggers!!!!

See Ya!!

A Fresh Outlook!!

Okay then after the recent, lets face it, pretty dismal news regarding my present and more importantly future, which I say with some uncertainty, I have sort of discovered that there needs to be some pretty major changes in I suppose all aspects of life to a fashion, whether it be Physical or Emotional.

I have discovered that whereas I thought that I was plodding along trying to live each day to the full and also living for today I have actually been living for the future really. What I mean for example is that say I had an appointment at the hospital in a couple of days time and nothing really planned till then, I would be looking forward to going that I would not make use of the days leading up to it at all, such a waste, especially when faced with the possible future in store for me. So “THIS HAS TO STOP RIGHT NOW” and I have to start to living more for today. And making use of times when I have a burst of energy and knowing when to take a step back when all is not well.

As many of you will know, I have always had this issue with always pushing too hard some times more seriously than others and to be honest I haven’t done myself any favours in that department and have, although unsuccessfully, tried my best to kill myself off whilst doing so on far too many times to think about. Now though my approach needs to be along the lines of thinking, if I was to have someone help me get from the chair to the car, thus taking all the strain out of the action, then I wouldn’t get into such a state as usual and then not actually enjoy going wherever it is I am going. Simple isn’t it?? Well maybe not that simple as I have lived with this for some time now and as they say habits are hard to break. But after all, what do I have to lose?? Only everything to gain. There are after all, always ways to change things to make it easier, say moving an item of furniture out of the way that was blocking my path etc, well you all get the picture I think.

So here goes, I’m gonna give it a try at least. I really want to say, “What have I got to lose” but somehow that sounds quite negative it should be more, “I’ve everything to gain” or in the words of a World Renown Expert in all things Porky especially the Low Salt Breeds, “Onwards & Upwards”


See Ya!!

To Breathe Or Not To Breathe??

I hope you are sitting comfortably as this post is quite long although it does delve into some major thoughts later on which I think would not be explained rightly in a few words or so.

I dragged Judith and my P.A (Kya) to probably my most hated place yesterday, (Llandough Hospital) for an appointment with I would guess my least favourite consultant in the Chest Clinic. I haven’t actually seen him for I guess around 8 or 9 months now as I had cancelled my last appointment as I could not see any point in attending to be put through hell on the various breathing monitoring machines, those of you that have had this experience will tell you it is not a good experience and always leaves me coughing and spluttering and generally shorter of breath for the rest of the day, and when I do eventually get to see the man he doesn’t tell me anything that I didn’t know previously, that is unless he has a brainwave and decides to give me another diagnosis to add to the 10 he has already given me to date. Merlin had suggested when I saw him last week that it might be an idea to go this time to at least have these lung function tests done to get yet another new “Base Line” figure as to my lung capacities etc.

As I had mentioned in the last blog I believe it was the gvhd had in fact risen now up to nipple level causing yet more of an obstruction to my lungs being able to expand and if left to just continue un abated it would eventually starve me of oxygen. This, of course had stirred up all sorts of visions and subsequent emotions afterwards as you can imagine. Well I know, and to be honest you would have to be extremely stupid if you didn’t, that my results would be considerably worse than previously but when faced with the facts in black and white it is at best very startling and at worse downright frightening. The machine used to collate the results of the tests have just been changed so when I was in there having them done they could not access the previous results for me to compare and had to wait to see the consultant before I could get them. Well in we went. After a bit of searching back through my notes which is no easy task as there are hundreds of them and some twiddling on the computer he came up with them and the results are as expected not very good reading. They are split up into two main categories. One figure is given as to the overall capacity of my lung and the other which is more important in some ways as this more or less determines the efficiency of the lungs too, Is the capacity of the small airways in the lungs so here they are.

Previous: Overall Capacity 1/3rd Capacity able to be used and Small Airway: 1/5th Capacity able to be used.

Yesterdays: Overall Capacity 1/5th Capacity able to be used and Small Airway: 1/10th Capacity able to be used.

The second result highlights not only the deteriation of the lungs overall but the seriousness of the lack of efficiency too.

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WARNING!!! THIS NEXT SECTION CONTAINS THOUGHTS AND FEELING WHICH SOME PEOPLE MAY NOT BE COMFORTABLE WITH SUCH AS DEATH. I DO NOT APPOLOGISE FOR THEM AS IT IN MY OPINION IS A MAJOR PIECE IN THE OVERALL PICTURE THAT HAS TO BE DEALT WITH.
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I know this has been getting worse for some time but for all sorts of reasons I guess I had just tried to not think about it as in the long term progression. Therefore it has brought on new discussions with Judith and some of the many other millions involved in my care in some way or other. Things like would I like to be taken to I.C.U to keep me alive on a machine of some sorts if I was to get say a serious case of Pneumonia? Or any other reason for me being taken there. My thoughts and wishes are fairly clear I guess in this matter although I will say that up till these last few days I had not given it much thought. My approach to this would be that if, by being treated they can give me assurances that my “Quality Of Life” would be better than it is now and not just used to prolong my life then at this moment and with the level of Quality Life I have now then I would accept treatment. If, or more likely, when my condition deteriorates to the stage where I am Bed Bound and reliant on other people to do everything for me then I will not accept treatment which I would just see as prolonging the inevitable end result, Death. There is no denying the fact that for me the future is not too bright and although various things are being done to at least stem the flow of the onslaught of the various problems the reality is that I will just continue to get worse and worse and the skin will get tighter and tighter and the lungs will eventually not be able to keep me going with enough oxygen and I would like to at least I guess be comfortable in the fact that Judith, more than anyone else isn’t faced with the horrendous decision of allowing them to treat me or not and also what I can only begin to imagine must be the hardest choice of all that many people are faced with on a daily basis and that’s, when is it time to say enough is enough and switch of the life support machine? There is too another important thing that I would like to happen and that is that I would like to “catch the last bus” or “Drive off into the distance” or “DIE” if you like, whilst at home and not in some grotty hospital connected up to all sorts of things making constant beeping noises and hidden under a mass of spaghetti like tentacles stuck up and into every available orifice. This does seem one area of Cancer Care in particular that is very good, palliative care. They seem to be very efficient in their approach and do a great job in supporting not just the Patient but all the family and other relatives and friends etc which is great relief.

So you see there will be a lot of discussion needed over the next few weeks etc and no doubt a lot of maybe more thought provoking posts as things arise. This may sound kind of strange, in fact it feels kind of strange, but in talking about Death and everything leading up to it so to speak I am feeling almost positive about it if that’s possible. Maybe uplifted might explain it better but it most certainly is not a negative feeling at all.

Okay then I am off to have a bite to eat, alas, not a bacon Sarnie as I’ve run out of a somewhat important ingredient. Bacon. Have to make do with some noodles or something.

See Ya!!

All Clear!!

I guess it doesn’t take an idiot to work out that I have been a little quiet at the moment and I suppose there are a few out there who would have been glad of the break, a chance to regain some sense of sanity, but there has been a lot on my mind of late, much of which I have talked about in the last few postings. Stuff like the worsening mobility problems and the breathing etc ect.. I would be lying though if I was to say that this is all that is causing me some concern / distress. Just when I thought there was nothing else left out there for me to experience and I don’t mean things like Bacon Sarnies and nice juicy steaks and also the latest delicious addition to my varied diet, King Prawns in Batter from the local Chinese, which are to die for and really not fattening at all!! Back to the point, see just the thought of food sets me off on a totally different angle. About 2 weeks now I noticed a lump in that very delicate area between my legs, no not my wallet, it was in my, well , do you want me to spell it out for you?? Jeeeez, why do I find it difficult to write “it is in my Scrotum Sack, where my Testicles or Balls as they are commonly known reside”?? it is quite mobile and doesn’t appear to be connected to either testicle which as I have subsequently read is good news if there is such a thing, but as you can imagine all sorts of things spring to mind. I was thinking back to the very early days when I started out on “Chemo Highway” and remember being told then that the risk of contracting other forms of Cancer after being diagnosed with Leukaemia was a lot higher. I will admit that at first it was a case of burying my head in the sand and refusing to accept there was anything there at all, so much so that I didn’t look again for a few days. Sadly though the odd little twinge of pain and slight soreness was there to confirm that something was not right down there and I needed to get it at least looked at. I did my usual trick and kept it to myself, not even telling Judith for all the old stupid reasons which I seem to cling on to such as not wanting to be a burden or not wanting people to feel sorry for me etc etc it has appeared to have grown a little over this time although the pain felt is still the same if not maybe a little less not that this has eased the worry. Anyhow, I decided that as I was to go and see Merlin last Friday I would hang on till then and have a word with him. I obviously had to tell Judith before then which was quite hard actually. She has been a real rock for me to cling to all through this and just seems to always have the right things to say at the right times. No matter what I put her through she always bounces back. I could probably write a whole encyclopaedia on what she has done for me, especially these last few years and I love her to bits, well, what’s left of me does!! So when I went to see Merlin Friday he sent me for an ultrasound scan as a preliminary check to see what was happening. When I finally managed to get myself in a position that the radiologist could examine me due to my breathing being exceptionally bad that day he had a good old poke around. He assured me that I had a perfectly fine, normal pair of Testicles and that the lump was nothing to be concerned about at all. It was most probably some kind of cist or swelling around where they has tied up the tubes many years ago during the vasectomy. I must admit I did have a feeling of relief, as although I had pretty much convinced myself it was nothing by the time I had got there it did help to get a more, lets say, professional diagnosis. So just basically keep an eye on it and if it continues to grow or become more painful to arrange to go back.

Between Judith and myself I think we put Merlin straight in the sort of major problems I am now having to cope with. Up till now the skin gvhd on the lower half of my body has started at the level of my belly button and gone right down to my toes. Now though, on examination he found that it has moved over the last 2-3 months up in line with my nipples, a change of around 7-8 inches I guess, quite considerable. The obvious main problem with this is that this tightness will have a direct effect on my lungs being able to expand as the room available will be less. The seriousness is also that left uncontrolled the result will end up me not being able to breathe in enough oxygen to sustain life, which as you see, may cause a few complications. As the ongoing squabbling over who is going to fund the Extracorporeal treatment continues on, some 9 months after it was suggested that it would be of benefit for me, we are pretty much struggling to find other forms of treatment. Merlin has decided to put me on a course of Methotrexate once a week, which should have the desired effect of at least slowing down the gvhd army’s onslaught I have had a dose or two of this in the past but then it was as part of the overall Chemo regime and much higher doses too. He has put me on 10mg once a week which should keep me out of the sickness zone so to speak. There are as usual the same old side effects such as sickness and stomach problems, but the main one with this drug is Mouth Sores of which Peter explains all on his postings lately even forcing him to for go the odd Bacon Sarnie which is deadly serious indeed. I am hoping to not be able to compare notes on levels or soreness if that’s okay by you Peter??

I feel like Michelin man at the moment due to the dreaded water retention which seems to be pretty severe at the moment.

Right off for a surf around as I think I have bored you all quite enough for one day.

See Ya!!

Wrong Or What??

How wrong is this?? An elderly resident at a nursing Home, whose rights are not considered to be covered under the European Human Rights Act, yet some bloody religious fanatic, who decides to take it upon himself to strap a bomb on his/her back and set it off in a crowded place killing possibly hundreds of innocent people in the process is!!! This surely is not morally right. I know that in this country the present day, almost unhealthy obsession with all things being “Politically Correct” is to a very minor, in my opinion, needed but is it just me that believes we have already gone way, way, way too far? I thought we had gone too far when children were no longer taught the great old classic, “Bah, Bah Black Sheep” as it was now considered racist, but the finishing straw for me was recently when they have now stopped pupils from putting up their hands when wanting to answer questions in class. Are they having a laugh or what??? I have had this thing for a while now that the various Disability Action Groups etc, who’s intentions are quite honourable, standing up for equality and peoples rights etc, all of which are so badly needed, but so many of these seem to spend so much energy on what I would consider a trivial matter what Disabled People are called. To me, being disabled myself, I really couldn’t care less what you call me, be it “Cripple”, “Spastic” etc etc, but I care a whole lot more about being given equal rights to Employment, Education, Transport, Bacon Sarnies etc etc, isn’t that what is important after all??? I guess it may not grind on my nerves so much if it didn’t change so blinking often. It seems that every year or two we have to now refer to Cripples like myself as something new. Maybe the next one could be something like “Bacon Muncher”, but I guess saying that might offend the Muslim population because of the whole pork thing, oh yeah and all the Veggies out there too. Back to the drawing board then!!!

I think I must have mentioned somewhere in the deepest realms of the many previous rantings my issues regarding having a bed downstairs in the Living Room. as you will know, I haven’t actually slept in a bed, apart from the many stays in “Heath Towers” that is, for far too long to remember now, despite almost continuous hinting and more recently attempting to beat me into doing it from all concerned such as District Nurses, Doctors etc. Well, on Monday I finally caved in to all this pressure and asked the District Nurse to arrange it for me to have one of the All Singing, All Dancing Hospital Beds delivered, which is actually coming tomorrow morning. I am hoping it will at least help somewhat in trying to sort out my sleeping pattern by actually allowing me get some in the first place, might help. My main concern was that I just didn’t want the room to turn into a hospital like room for all sorts of reasons but when you get to the stage I am at, not sleeping more than about 1 to 2 hours on a good night that is, I actually had 20 mins the night before last, which made me into a right mess all day yesterday, and actually stopped me going shopping which I was really looking forward to after day centre, it is time for a change I think. I suppose even if I wasn’t to sleep much more, because of the control over the positions it will be able to go I will be somewhat more comfortable than the already fairly comfortable reclining chair I am using 24 hrs a day at present. The one major downside is that poor old Judith is having to do some major furniture shifting to be able to fit it in, and it will unfortunately leave me with just 2 chairs including the recliner and the bed to sit on and no sofa due to lack of space, but we will just have to get used to it.

Dentist today too which wasn’t too eventful. They just ended up grinding down a few stumps which used to be teeth, but are now damaged down to almost just roots that are left in readiness for having a complete denture to replace the almost complete one I have already in place in the bottom. The next step is to do the top one which will be a little different as they need to take out 2 back teeth before changing the denture, OUCH!!!!

See Ya!!

Deep, Deep Down!!!


Oops has it really nearly been a week since I last inflicted my rantings on you lucky things. Think yourselves lucky as it hopefully doesn’t happen too often.

I guess a lot of my time has been taken up, trying to get my head around the changes that are happening in my life some of which as you may have gathered by now require a lot of getting around so to speak. I have been finding more and more that the old negative demons that have appeared from time to time in the past, trying their best to drag me into their pit of depression are screaming more loudly than usual and I would be a liar if I was to say I have not at least spent some time in their company. I’ve had many a thought such as, “Is it really worth fighting on”, “Was it all worth it?”, “Woe is me”, you get the picture.. It has been and no doubt will continue to be a real fight to not follow this route as however much you know deep down that it is not the way to go it is so tempting to take what many will see as the easy option, if there is such a thing and just give up. But, as I’ve pointed out on a few occasions I am a stubborn bugger and will continue to fight till the end. One thing that always seems to come to mind at moments like this is that, if I was to give up now what has all the suffering and punishment I have not only put myself through but all my family and friends as well as all the professionals involved including people like “Merlin” and also one of the registrars “Hagar The Viking” who stayed at my side treating me for hours after he was meant to be off duty, then coming back in to continue on after just a few hours rest, when I was pretty much in a continual seizure for quite some hours and pretty damn close to popping my clogs for the first and sadly not the last time, to name just a very small few. They do say that if I was a cat I would have used up all my lives by now!! So you see when you add into the equation the thoughts of letting others down too and not just yourself it kind of makes you want and need to fight that bit harder. One other thing too. Although I am by know way seen as a church going Christian I quite often have this phrase floating around in my mind which I know comes from a hymn I used to hear and sing too all those times when I was dragged along to church as a child and that’s, “Fight the good fight, with all your might”. Which does ring true. See mum it was all worth it in the end.

It is quite well documented, although I guess, always quite impossible to measure the effects of positive thinking. Take for example the number of elderly people who after loosing a partner after being together for years will then pass away themselves quite soon after, having in a lot of cases been in a state of good health all their lives. Just the thought of life without their loved one combined with just giving up in reality is enough to bring this on. We all just seem to put it down to as they say “A Broken Heart”. So the power of positive thinking is not to be underestimated in my opinion.

Okay then I will leave it there for today, jeeeez I feel like a teacher or even a preacher reigning down my sermon on you all, ha ha ha!! I’ve seen a few scary examples of each over the years too let me tell you!! Enough to scare you into confessing to anything whether you did it or not.

See Ya!!

The Eyes Have It!!

In the words of the Speaker Of the House in that Dream World where all the puppets go to play, the eyes very much do have it indeed. Before i drive you as insane as me i must point out what the hell I'm on about. I finally got round to attending the Eye Clinic at Heath Towers after months and months of waiting and countless appointments being canceled by them, not me i must add. The original reason for the appointment was to investigate an apparent infection i had at the time which obviously has long gone since. In fact i have probably had 2 or 3 since then but as my eyes are still pretty bad at the moment it is a bit needed. It didn't start off too well. I was shown into a room to check my eyesight and placed in front of this kind of mirror, reflecting a series of letters which i guess a lot of you will have experienced before. Well, after placing this kind of cover over my left eye she asked me to read out the letters. I was looking and looking for them but said that i couldn't see any at all which was true. She looked rather confused and alarmed and after a little maneuvering of the mirror the penny dropped and i realized that she wanted me to read out the letters being reflected in the mirror and that they were not in fact printed on the back of this cover she had put over my eye. Ha Ha Ha!!! What a plonker!! In to see the Registrar then. He set about poking and prodding around in both eyes before giving me his expert opinion. He has said that i actually have Graft Versus Host Disease of the eyes, something i never knew you could actually get. It results in you getting large areas of dry dead skin on the surface of your eyes causing all sorts of irritation. On the plus side at least i don't have an infection, but the downside is that i have to put in Lubricating drops every hour to keep them moisturized. This may reduce a little in time as the lubricant will build up some sort of layer but even then i will probably end up needing it about 4 times a day and for life sadly as it is a permanent thing. So just when i thought i didn't have anything else left for this lurgy to attack yet again i was proven wrong. The pain has eased a little thankfully but i just have to put up with everything being sort of blurry for about 20 minutes every hour which is fun whilst it breaks down a little. I must just add a note on the usual hassle involved with such an outing as this and thats the amount of bloody waiting around involved. The actual time spent in the company of the doctors or nurses and then on to the pharmacy was maybe around 25 minute yet i was up there along with my p.a for about 4 ½ hours. Very frustrating in the least.

I had a great day today again at the New Horizons Day Centre or as the beloved daughter calls it “Day Care”, cheeky git!! i haven't said a lot about them yet i know but they won't escape the blog for too much longer I'm sure. They're a lovely bunch and so friendly and talkative too, which all helps to make you feel settled, and the foods nice too. I think i will begin to make my mark soon in corrupting their minds with all the drivel I've inflicted on all of you for so long long now, i think they may be about ready now for some hard core Jonny5 Ranting!!! Wish them luck poor souls!!!

Okay more eye drops needed as i cant see the blinking screen anymore.

See Ya!!

p.s HIYA LOUISE If YOUR READING THIS!!!!!

A Change Of Direction!!

I've come to the realization over the last few days that i have appeared to have turned a corner on the windy road I've been following all these years and a pretty sharp one at that too. It has been blatantly obvious not just to me but family and friends that things like my breathing is getting worse and i don't seem to going be out as much. It was after all, only a matter of maybe 3 or weeks ago that i was able to make it out the kitchen in one piece, most of the time anyhow, whereas now if i attempt it at all it takes me ages and i have to stop a few times to catch my breath before finally arriving in such a state that i am useless. It's almost as if my security blanket has been taken away from me or say, my dummy because for so long it seems like i have been treading water. Everything that seemed to come up as in changes in my health etc i had experiences to some degree previously so i sort of knew what to expect, whereas now this really is uncharted territory and i suddenly feel quite lost at times. I'm the sort of person who wants to know what to expect i guess and as you will probably have read throughout this blog have struggled like a lot of people i guess with the feelings of say, giving up more independence, being a burden etc etc.. so when you get down to the last few bit of independence you have left they suddenly become extremely precious, and you tend to fight even more passionately to keep hold of them, but in doing so i think you actually make things harder for yourself in the long run as far as dealing with the emotional side of things is concerned. In saying that though, how many times have you heard that someone who had been fighting to stay alive gave up in the end and they died very quickly afterwards, implying that if you fight you can prolong things which i do believe is true to certain degree. So yet again h'm placed in blinking no win situation.

In saying all this though i seem to be coping with things fairly well and h'm even trying to think that bit further ahead to when i will be permanently reliant on some sort of wheeled contraption to get me round the house etc yet it seems i can't think past that to when, heaven forbid, i could end up being bed bound as i think at the moment that thought is very much of loosing all independence completely and IT'S SCARY!!!!!

Also a whole new world has been opened up to me, that of the Palliative Care side of things. I have obviously had some dealings with some of the services around as they do tend to overlap somewhat but the last 2 weeks or so it has been much more prevalent. In order to give Judith some respite and also enable her to carry on as a Civilian Instructor for the Air Cadets a few evenings a week i have been having a Marie Curie Nurse coming to sit with me for around 4 hours or so of an evening. When it was originally discussed we were looking to maybe have 2 evenings a week but it has worked out a bit different than that as they have been here every evening except Sunday. It's a sort of sitting service i guess and i have been very lucky in that the women that have been have all been lively, chatty and easy to get on with. I have also managed to book a short spell of respite care in the summer for a break away. I have been told that i should be able to get up to about 4 weeks a year respite which will help considerably i reckon for all concerned. It is something i had not even considered before in fact i never even knew that this sort of thing was available and to be honest just the thought of it would not have appealed to me at all, whereas i am really looking forward to it now.

Sadly the main hurdle to my keeping my independence as long as i can and to a big degree is having an effect on my physical condition worsening let alone the mental pressure is that of the works to be done around the house such as the Bedroom / Bathroom extension along with the Kitchen alterations and the Ramp etc etc etc all of which are hopefully going to be done under the DFG IF???? the local council ever pull their finger out and actually get on with doing something about it. But i really don't hold out much hope of ever even getting to the top of the so called priority one waiting list that h'm on let alone them actually doing the work. I've got more luck in winning the London Marathon.

Right time for some grub. Take it easy.

See Ya!!

Look And Learn Mr Smith MP!!

I had a visit yesterday from Local Councillor John Thomas and Ken Evans (Officer For Highways) from the Local Council, to view the situation regarding the lack of sloped curbs around the area. As some of you may have read a while back, John Thomas had already visited and indeed came for a drive around the area to see first hand what I meant and did say at the time that he would get in touch with them to try and sort this out. Well, bearing in mind my experience recently dealing with MP’s and Councillors has not exactly been an enjoyable one, in fact it has been very tedious and pretty much a complete waste of time, I was not putting much faith in him actually being able to do anything, that is if he could be bothered to try in the first place. How wrong could I be??? I will explain why now. He has replied to every single email sent and promptly too. He has made contact with various people he said he would to sort It out. He has actually been to see me personally to try and get an accurate picture etc etc which sadly NOT ONE of the, dare I say it, HIGHLY PAID MP’s has done. Okay back to the visit. We had decided that at least to start with, it may be an idea to have a look at the places where a sloped curb will make the most difference for me in particular as after all we all know it comes down to funds being available or not to actually do the work. The first area we got to in a couple of minutes was I thought going to be a tricky one as the pavement on one side of the road had not been adopted by the council and therefore was not their responsibility. Well blow me!! After a quick look the response from Mr Evans was, “No Problem. We will have that done within the month”. I couldn’t believe it. No having to fight or anything, just a straightforward no problem. Well we carried on to another couple of areas which again would be very much needed to be sloped in order to allow me and others of course to get off the estate all of which came with the same reply. In all 3 areas are to be sloped consisting on 5 slopes, I know this seems weird as there should be 6 but for some strange reason a slope was put in earlier on one side of the road but not on the other. A ploy I recon to get you out on to the road so they can run you over. Ha has also agreed to come up with a long term plan to slope all the curbs into the village, therefore making it accessible to people, which I guess will involve about 20 odd slopes and even I don’t expect that to happen overnight, at least he is aware of the problems and is willing to try and address them, which is a refreshing change after all the negativity of late.

So may I take this opportunity to THANK YOU, Councillor Thomas for at least partially restoring my faith in the Political / Local Government system.

I really must learn to bloody sit still. My chest has been fine this morning up till now, until I decided to go to the toilet a marathon of some 6 steps or so. By the time I got there I was a blubbering wreck, struggling for breath again and then I had to eventually return which made things just that much worse. After about 30 mins or so when I eventually regained enough composure to be recognised as one of the Homo Sapien species I’m left with a rattle snake chest from hell Argggggggggggggg!!!!!!!!!!!!

See Ya!!

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!!