You’ve had your warning!!

Okay then. I guess if your name isn't Merlin then this first part is not meant for you really but if you would like to participate in your own special way you can always leave your comments HERE. I am giving you fair warning Mr Merlin that I am due to see you next in 2 weeks in the Day Unit and as I'm sure I mentioned when I saw you last that would expect you to have made inroads into this treatment on my behalf. Therefore even if nothing has been done till now at least I have reminded you in time so that you can do something about it. I suppose equally if any of you at Heath Towers are reading this maybe you can pass on the reminder for me?? For the rest of you maybe you would like as I say to give him your own little reminders HERE.

So, what's been happening recently then?? Well to be honest my chest has been a blinking nightmare again. From around Thursday last week and now still although it has eased a little, it has been really tight and quite phlegmy for a change. The pretty much constant, at times, coughing makes breathing quite difficult as well as causing bloodshot eyes which might come in handy to scare the kids off when they come round Trick Or Treating soon although I seem to have the same effect without even doing anything. It's been one of those times when nothing works whether it is the puffers or nebulae's or oxygen. It ruined my weekend plans to go to the food festival as I mentioned and then basically has tried to completely ruin everything since then. I did manage to get out for a couple of hours Sunday just to remind myself what the outside world looked like but paid for it later on alright. Still no raised temperature which is a good indicator that the immunoglobulin must be doing their job in helping my immune system to fight off infections etc.. I hasten to add also that we rapidly approaching a whole year without any admissions to Heath Towers which for those regular readers will know is a remarkable thing considering the amount of them prior to the immunoglobulin starting. I think it was easier to have said the dates that I wasn't in there rather then the ones I was as there were far fewer to remember. I've lost count of the number of times I have been brought home by ambulance transport after a couple of weeks of punishment at Heath Towers only to be taken back in literally a couple of hours later because my temperature had gone up again and then spending the next 2 weeks all dripped up again and that was if I was lucky. Still hopefully those days are gone now and for those on C1 reading this, I love you all to bits and do appreciate your care but I hope the hell I don't have to come and see you again. What's that Penelope?? Ah, you feel the same way too!!!

Right I'm off then. Please feel free to comment as I said as I'm sure he will appreciate it and I know I will too.

Thanks!!

Ooops!!!

See Ya!!

See what I mean about planning??

The regular readers of this blog will have heard me rant on about not being able to plan ahead anymore due to my fluctuating health which can change from one minute to another never mind one day to another. This weekend is going to turn into yet another time that I have tried to sort of loosely plan to do anything only to find that my health, more specifically my dodgy chest, has scuppered any hope of going out. This time, just to add to the misery of failure the weather has turned out to be rainy all weekend which may have stopped me from going anyway, but at least it would have been more a point of choice and not dictated to me. Ah yes, the old story of being robbed again!!!!! There’s no hiding the fact that I love all things food especially the delights of a juicy bacon sarnie, much like fellow blogger Peter, a man with impeccable taste I must say. Well this weekend is “The Cowbridge Food Festival”’ just down the road from here. It has become a really big affair over the years attracting thousands of visitors over the 2 days. It’s a great place to not just feed yourself up with all the freebies being handed out at all the stores but a chance to meet up with all the local suppliers and to get some inspiration too. There are lots of stalls lining the street and it seems everywhere you look something foody is going on such as chefs showing off the expertise or the latest in must have kitchen gadgets being demonstrated and the smell is just worth going for on its own. I have been looking forward to going there for months now and although I haven’t actually planned anything in stone o had every intention spending some time there only, yet again to fall at the final hurdle. My chest has flared up yet again the last few days. It is very tight at times with a constant tickle in the back of my throat which nothing seems to be able to relieve but at other times it is like I am 60 a day smoker coughing up all sorts of unexplainable goo both of which are playing havoc with my ability to breathe which you can appreciate is not good position to be in. The oxygen concentrator has been on an awful lot the last few pumping me full of the magic gas which does help at times although it comes with its problems too such as it makes your mouth really dry so you drink more and then you pee more etc etc also it causes problems with my eyes too. What are you on about I hear you ask?? Well, for those of you unfortunate to have had to have one of those blue oxygen mask on, have you noticed the way that a lot of the oxygen, despite there being holes in the sides of the mask to stop it happening, comes out of the top of the mask, which is like holding a fan directly in front of your eyes, which when you consider that my eyes are doing a great job all on their own at staying as dry as they can be this extra help from the oxygen is not a good idea. A lot of the old masks used to have a sort of little piece of metal that went over the bridge of your nose and when pushed together stopped a lot of this happening but I rarely see them anymore, maybe its down to the fact that this little bit of metal did come off eventually and could be a hazard to small children I guess. So I have to sit there for hours with either my eyes closed or squeezing the top together and holding it there all the time. The cause of this lamest flare up is I think down to the changing weather which always causes me problems. At least my temperature is staying normal which is good indicator at least there is no fever, so it’s a case of see what happens over the next few days and then it might be a trip to see Merlin, or more likely a phone call to get him to tell my GP what to prescribe as my GP bless her is too scared to play around with any of my medication as she puts it, “I’m a Special Case”!! and she would rather leave it to Merlin.

Okay all this thinking about food has started me stomach off so I had better go and feed it. God, I miss Kya, one of my carer’s not coming on the weekend as she makes a mean cooked breakfast for me during the week but I’m left to fend for myself on the weekends and it’s not the same.

See Ya!!

When is a salesman not a salesman??

When he’s the Managing Director of course. Now I know there are lots of you staring at the screen with rather blank looks on your faces and I don’t blame you to be honest but to clear things up I will let you know what I mean. It is in fact all about one of the loves of my life or should I say, one of the nightmares. That’s the car. When we went, all those months ago to the Motorbility Roadshow to check out what was available for me and my chair to travel around in we arrived at the stand of “The Automotive Group” a vehicle conversion specialist from Newcastle. We were met by this, what appeared to be a really nice man who knew his stuff. He explained the vehicle’s advantages etc perfectly and even suggested having them fit an older model ramp to the new model car so that the ramp was even lower, a problem we had with nearly all the other vehicles we tried out incidently. He explained that he could get a hire vehicle down to me in 3 days and that they would take away my old one. The new converted one would be here then in 2 weeks. He never once mentioned the small fact that he was the M.D. we decided to go away and have a final look around before making up our minds but knew that we would go back there mainly because of his attitude and approach and willingness to help. So after a walk around we did return there and although he was tied up with another customer did pass us on to one of his salesmen to fill out the forms telling them what we had discussed about the ramp and delivery etc. well as you all know the 3 day delivery on the hire car turned out to be just over 2 weeks and the 2 week delivery of the new vehicle turned out to be around 6 and that’s only due to Motability coughing up the deposit to get the metallic one instead of the no deposit plain one I had ordered. Well then, the new one arrived eventually and as per usual not without it’s faults. First the retaining belts were really complicated to work out. Then the spare wheel has just been dumped loose in the back with nowhere to attach it either. The fuel gauge is eratic, showing full one minute then empty the next. The exhaust sounds like a tractor and is spuing fumes back into the car when the windows are open due to the fact that where they have had to re route it because of the lowered floor it now only has 1 silencer instead of 2 and comes out the side of the car not the rear as before. I booked the vehicle in to my local main dealership to look at these for me and when the eventually booked it in they refused to touch it as the faults were all down to the conversion company and not Fiat and in fact that this was probably the worst conversion they had ever seen, which was very reassuring as you can imagine. Oh yes, I forgot to mention the other that happened too. The drivers door decided to lock and refuse to open at all whilst Judith was sat in the drivers seat and me in the back I must add. She tried everything including brute forse and eventually thankfully managed to clamber out via the passenger door. The rac came out to have a look and eventually after about of ½ hour of trying the handles etc it just popped open as if nothing was wrong at all, bloody annoying. So after contacting Motability again about these faults they had got Automotive group to ring me to sort them out. Lo and behold the M.D rang me back straight away and was very apologetic indeed. After explaining what the problems were he promised to carry out the work but would need to come and take the vehicle away. He told me that he would have a hire vehicle brought down to me on Tuesday (Today) but would ring me Monday to let me know what time. I told him that to be honest it would be a novelty if anyone from his company actually rang me back as they haven’t ever done so up till now. He said I am writing it in my diary now to remind me. Surprise Surprise, when I rang them at 4.45 Monday as he hadn’t rang I was told he was not actually in the office today and noone else knows anything about it. I told the woman on the phone that unless they got hold of him urgently and rang me back they would be having the vehicle back on their doorstep in the morning and a cancelled order to boot. I did get a phone call a short while later to say though that the vehicle they are hiring me would not be ready till Wednesday not Tuesday and I can’t repeat what I actually said as my mother reads this, but I can assure you there were lots of £%^*&%$%^&%^%%’s. so they are supposed to be ringing today to let me know what time they will be here but don’t hold your breath, and the same goes for Wednesday too.

Time to give my eyes and fingers a rest too as all this blogging is hard work you know. I am sill looking into the Volunteer Typewriter.

See Ya!!

I’m on a roll now!!

Well guys after the severe lack of blogging of late I am on a bit of a roll at the moment what with a few in just a couple of days or so. Now I know there are some amongst you who have been glad of the rest but there are numerous sad, lonely, depressed, often suicidal people who have missed the charm witty banter that has be the trademark of this blog for the now, what must be about 2 frightening years.

I’ve thought these last few days about what to write about and to be honest have struggled a little for any inspiration. Isn’t it amazing, when I can’t write because my eyes are bad my mind is constantly churning out idea after idea, but when I can just about manage to type a few words or two it refuses to play along. I tell you what has been coming out though are those little sayings like for example if you buy something new and it doesn’t work properly, they will often say “It just needs to bed in a bit” or “It needs to settle”, WHY DOES IT??? IT’S BLOODY NEW!!!! Surely it should work right from the beginning?? Would you put with a say, a brand new car breaking down every 2 miles with the explanation given that “it’s new and needs time to settle in” would you hell!! But we all just accept it, me included. Why don’t the make everything already settled/bedded in right from the start, or is that just too difficult??

I might have been offered a good solution to the problem of writing the blog with the state of my eyes in the shape and form of one of a volunteer from one of the countries finest upstanding group of young men and ladies, “The Royal Air force Cadets 1100 Squadron” of which Judith is a civilian instructor. I have been asked if I would like one of them to come over and type up my blogs for me if I dictate to them. They can apparently use this to go towards one of their awards I believe too which means we all benefit in the end, although I think you lot will probably have the short straw, as you know you, the more blogs I do the more your brain is going to be bombarded with all my junk. I think this is a real nice gesture and appreciate it a lot. We will have to look at how exactly we can do it because I guess not many of them will be up to typing at the speed of light which is often how quick this rubbish flies out of my brain but you never know I guess?? Just think though, the opportunity to clone my own little Jonny5, brainwashing her/him with the thoughts that travel through the otherwise empty void between my ears constantly.

Right I’m off to write up my master plan.

See Ya!!

Off To See The Wizard !!


Well as i had promissed earlier here is the details of my latest meeting of minds with Merlin. For one reason or another i haven't seen him for a few months now instead i have been seeing his lovely registra Thumberlina, (Rachel). I try to not think he is avoiding me although there may be an element of truth in that thought. After missing him yet again the week before Rachel suggested that it would be an idea to book a Clinic appointment rather than just waiting in the day unit for him to see me when i am up having my Immunoglobulins and that due to the pronlems i wanted to sort out with him, the sooner the better and am appointment was made for the following tuesday.

So the day arrived and we turned up the usual 15 mins early just in case!!!! but should have thought really that the way Merlin works he is running behind when he gets up in the morning, so a 4pm appointment means you are in for a long wait. The nurse who'd drawn the short straw for the day called me in to have my blood taken and was sadly met with a resounding "Get Knotted" although i was polite, but after being tortured by them only 4 days previously, nearly 10 attempts to get a needle in i said they will have to use those results. She did however with a lot of pursuation by Judith with comments like "Do it, or else you are walking home" and "I'll give you a slap" convince me to be weighed. I have been saying for about the last year now that i am 15 1/2 stone much to Judiths amusement but Hey Ho!! i was bang on 15 1/2 stone, a stroke of luck. Merlin finally come out of his cave and grabbed my notes saying he just had to make a phone call and will see me then, maybe the "Wizard get out of corners helpline"!!! So finally in we go ready for battle. No sooner were we in and he went to start, so i stopped him in his tracks because as far as i was concerned this was my opportunity to have my say. I have been thinking for some time that i have sort of been forgotten about ny him and his team. I told him straight that i wanted answers and no bulls--t this time. "What has he been doing about securing this light treatment for me for what now is exactly a year on"? I told him that i had no faith in him anymore and was not at all happy, thats an understatement, in the way i have been treated and i now want action. How dare he rob me of a year of my life waiting around thinking he was fighting my corner to get this sorted for me. I know that he has done a few things but the bottom line is we are no further forward than we were last october yet my health is a great deal worse. This Extracorporeal Photosynthesis treatment has the ability to not only stop the GVHD nut also to reverse some of the damage already caused by it and in some cases with remarkable results. A year ago i was still driving and walking around around. Spending lots of time on the Computer and Cooking ect and had lots of independance so the reversal effects would have made a huge difference, whereas now the GVHD has progressed so far that the same results will no longer be possible and who is to blame for that??? He informed me that the phone call he had made was to the Commisioner Of Finance regarding funding for this. Merlin had explained to him that as the treatment was very new and somewhat experimental the ammount of data available to judge it by was small compared to other treatments that had been around for a longer period. He explained that they will usually turn around straight away and say "Non" however the Commisioner was extreemly interested and asked Merlin to Email him the details available and he will have a look to see what he can do, which a bit of a shock all round. Merlin explained and in fact looked rather pleased with the fact that one of his patients had just successfully sued to PCT to get the treatment she needed but had been turned down due to funding. Now i am obviously pleased for this lucky patient but what about me? Don't i deserve the same level of support?

I guess i could go on and on about this much to your dismay but i think you and Merlin alike get the picture, that things are going to change from now on. No more easy touch Jonny5. I want what i deserve, with interest, from now on. Merlin has said that he will sort this out for me and that he will get back to me when i next come into Day Unit in a couple of weeks if not before. We will have to wait and see although judging on past performances i don't have much faith.

Righty Oh! I'm off to make some breakfast as Little Sis will be here soon to drag me off into Cardiff to go to the market and a bit of Retail Therapy too with hands firmly glued in pockets and wallet left at home to prevent and silly spur of the moment purchases, you know the stuff you just have to buy, "Because you need it"!!!

See Ya!!

What Have I Done??
Sadly i have been a little down for a few days. This road through life can, and in fact is, very twisty turny. For those of you who have followed, through the blog and other means you will have some understanding what i'm on about and quite frankly if you haven't been keeping up then it's shame on you and 100 lines, and think yourself lucky that they have banned the cane!! The main cause of all this is pretty much down to the way my health has been lately, more so the problems with my eyes. As i have explained the pain involved in looking at say a computer svreen or the Teletext on the TV etc is unbearable and has resulted in me very rarely summoning up the courage to even turn the computer on, which bearing in mind before this pain started i was on there about 10-12 hours a day and in fact it was a real lifeline to me. I feel that YET AGAIN this damn thing has robbed me of that pleasure and bit of independence i had. Why has this thing got it in for me?? What have i done to deserve this constant fight to retain any resemblence of independance?? I know i have never been a saint all my life as my family can well vouch, but surely nothing that could stir up this sort of determination to make my life so difficult? Energy is a precious comodity to me and i begrudge using it all just to fight things like this when it could be used for some of the happier things in lfe, such as living!! I suppose in a weird way it has taught me something though and that is I could never see myself coping if i was blind.

Okay then i'm off for now, so just a short one this time, which i know is about as rare as Rocking Horse poop on this blog. I still have to get on with the whole Merlin blog thing too which might appear later, but i just had to get this out of my head and on to here while it was still readable.

See Ya!!

Some Updates For You!!

Well here goes. Let’s see how far I get writing this before me eyes pack in again. I have found that for some reason if I just look at the keyboard and not at the screen I can go on for a while, but as soon as I look at the screen it goes all pear shaped. One problem though is that you can go on and on thinking it is okay only to find when you look at the screen that you have clicked on something by mistake and opened up lots of windows instead of typing anything.

Right enough of this bull, on with the blog while I got the chance. Health wise all is sort of ticking over I guess. The chest is about the same as it usually is this time of year, up and down with the weather. The skin is just at tight and causing some pain and lots of discomfort at times. It’s getting to the point now that I am having to shuffle between chair and bed etc instead of standing and swivelling if you get my meaning. This is becoming a problem in getting into the toilet which sadly will end up in me having to give up yet another fight I have been having and that is to have a commode in the living/dining/bedroom/prison which used to be our lounge many moons ago. Hopefully though the new extension might hurry up and get built before it comes to that but it will be a close run thing I think. Things are progressing at a steady pace there though. The final plans have been drawn for the extension and the kitchen alterations too, such as the lowered hob and worktop and eye level oven etc.. He has also been told by the grants department to put the work out to tender and has said that he has given the builders a deadline of Nov 3^rd for all quotes to be in, so progress indeed at blinking long last. Now I guess it’s on to the two other big issues in my life that I know you all just love hearing me rant on about. Any ideas??????? Yes, you at the back!!!.......Well done, give yourself a gold star. The Car and of course Merlin, both of which deserve a complete blog all on there own but I’m afraid my eyes won’t take it at the moment so this will have to do. Seeing as I have been at this for a while I am doing quite well and my eyes are holding out okay for now, but mustn’t speak too soon. The car then. As you know the new mobile arrived now a couple of weeks ago after they had firstly blamed me, ME!! For deciding to chose their No Deposit vehicle advertised which they had decided only came in red or blue both of which were not easily available in this country and in fact pretty much the rest of the world by the seem of it with the struggle they were having trying to get one instead of the £350 deposit metallic paint version which they just happen to have a few of in stock waiting to be converted etc. So when Motorbilty decided to pay the deposit instead of all the rental payments they would have to make they delivered the Shiny New Gold Car in 10 days. Sadly though all is not well as only you would expect from me. Firstly it took us about an hour to work out the restraining belts as the instructions were naff. Then after a week, we arrived back home only to find that Judith could not open the drivers door and was stuck inside. Luckily she managed to scramble her way out through the passenger side door else things could have been very dangerous. The RAC came and had a look and after about ½ hour of trying the handle inside and out and lifting the door etc it just popped open just as much a surprise to him as it was to us. It’s been working okay since then too so still remains a mystery. Next on the list of faults is the exhaust which is blowing quite badly making it sound like a tractor. The other problem with the exhaust is that where they have had to re route it out of the side of the car instead of the rear because they have lowered the floor it is causing lots of fumes to come into the car. The fuel tank has been changed too I think as the fuel gauge is extremely erratic, showing it full one second then a quarter tank the next which is not a good idea at all. That’s not the end of it yet I’m afraid!! The spare wheel which obviously used to be underneath is now just sort of sitting there loose in the back with me and not attached anywhere at all, which if would make a right mess if anything was to happen and we had to brake sharply. Thankfully all of this is going to be looked at by my local dealership later this week instead of having to be sent back to them useless idiots up in Newcastle. If first impressions are anything to go by the local dealership are a welcome change and seem very helpful. God this is going on a bit isn’t it.

I tell you what, I will leave the stuff about Merlin for the next blog as it will also go on a bit as there is quite a lot to say. A general picture is that he bore the brunt of a years waiting for this treatment last week with a few good and a few bad results. If it sounds intriguing to you, you are not wrong at all.

Right I’m off to rest my eyes for a bit and then I might have another go.

See Ya!!