Whoops!!

Well, here goes. I am going to try and catch up on all thats been happening of late and let me tell you its been yet another roller coaster o fhell like only I could have,

It all started back a few weeks ago, when as you will probably recall I was excitedly heading off for a week of pampering and indulgence at Jane Hodge Respite Hotel. When I arrived there on Monday I wasn't feeling 100% but thought it would pass. I settled in and got to know the great staff and most of all the amazing choice of food available such as steak with various sauces and some nice fresh salmon etc etc and the huge cooked breakfast on offer each day too, well I had to keep up my bacon intake!! Sadly by Tuesday morning I began to have some pain along with problems having a pee. I put up with it till Wednesday by just sleeping realy not even getting up for food, but I called the doctor out on wes morning. Thankfully my gp's main practice is nearby in cowbridge so one of them came out to see me. He confirmed what I pretty much knew anyway, that I had a kidney infection and put me on Cefelexcin. I wasted no time in starting them when they arrived from the chemist a couple of hours later but almost immediately they caused horrendous sickness. I persevered for another day or so but ended up getting them to change them to a less sicky one which I started on Friday. In the meantime Judith had contacted mr to say that puppy was back home from the baby (puppy) sitters, Jason, Cathy and James as he was not very well too so I decided to go back home early insyead of staying there till Monday. Okay then, you still there and not fallen asleep yet?? By around Tuesday the antibiotics were having some effect. However, when I got up Tuesday morning and Judith saw me I had turned a lovely shade of Yellow all over and as Halloween had been and gone I thought I might just need to see the doctor I think. 1 hour later I was sitting in the surgery discussing with Dr Pardoe how I was going to get myself into B4 at Heath Towers. (I know it used to be C1 but the buggers thought they could escape from me by moving when I wasn't looking, the fools...) still, it has been a year since I was last there. They knew something must be wrong with my liver to cause this and the blood results did indicate this but all the various sacns and x-rays etc showed nothing was wrong. After a few days they decided that it was most probably a reaction to the original antibiotics given for the kidney infection even though I had only taken it for a couple of days about a week earlier. So after a weeks internment actually in a four bed ward and not the usual solitary confinement which was a real bonus as there were other humans to talk to, thye let me come home, not before giving me a stinking cold to come home with which as usual has gone straight on my chest causing me all sorts of grief and yet another 10 days of antibiotics. It has taken ages to start to feel any benefit and only the last day or so have I managed to drag myself out of bed and into the chair, apart from having to drag myself to the day unit for my immunoglobulins last Thursday which have hopefully helped things along. Serves me right I guess for not managing to get my flu jab last month, but I wasn't well the day it was due so had no choice realy.

There, I managed it even if it did take me hours to do. Whilst in heath towers they did check out my eyes and as usual its not looking too good. The GVHD is slowly deteriating the surface of my eyes thus causing all the problems. It will just continue to gradually get worse as no treatment is available.

Hopefully Santa will bring me Dictaphone I have asked for and that way I can get to record my blogs for the trusty volunteers to type up and maybe even delve into the podcast arena, who knows??

See Ya!!

p.s thanks all of you for your kind thoughts and words whilst I've been away and I do appologise if I managed yet again to scare some of you!!

Disabled Rants Is Proud To Present!!!

As promised earlier I am proud to introduce the latest victim/volunteer Just William, my new pair of hands. Hopefully I won't manage to scare him off on his first appearance.

Right then, on with the job in hand. This week I've pretty much had a full service. It started off at the beginning of the week with a trip to the grooming parlour otherwise known as the chiropodist. Nothing much to report other than the usual clipping and general tidy up. Tuesday, as I explained in the last blog I went up to see The Butcher and if you read the last blog you will know what that is all about. I actually managed to have a day off Wednesday although most of the day was spent nursing my wounds from the nasty horrible man the day before. Thursday, as the regular readers of this load of tripe will know was my monthly visit to see Merlin at Heath Towers. As usual I arrived early to try and jump the queue but as many of you know this never works out in my favour, however this time it did and within half hour and I must say in the first attempt, was hooked up and slowly making my through the three bottles of sherry/immunoglobulin. After asking a few times if Merlin was actually going to appear he eventually did not long before I was due to finish. I was beginning to think after what we talked last month that he was avoiding me. I was wrong although I am not totally convinced because he did say that he had contacted the commissioner of finance and was waiting for him to write back. I also showed him some changes with my skin condition which is causing some concern at the moment. The two patches of skin on each of my arms where the pigment has gone and left a kind of tea stain behind have got bigger and the edges have become a lot darker. Also, I've noticed a kind of wart on my right hand (like an alien trying to escape from my hand). He was not too sure what this could be although he seems to think that it is probably some sort of fungal infection but is going to contact the dermatologist to get them to look at it. As you all know with Merlin's past record I won't hold my breath although you can be assured that I'll be kicking his ass next month if he still hasn't done anything. I did pass on Peters and my Favourite Cous' comments on to him too which seemed to fall on deaf ears. I also reminded him about contacting the Eye clinic to try and sort out this annoying problem with my sight and he did his usual trick of looking all innocent and sayings "haven't they sorted that yet". So after three hours or so it was time remarkably to make my way home which is a bit of a record for them as it usually five or six hours. Today was just the usual Day Care work and to be honest a pretty boring one at that. So nothing much to report on there.

Ok then, as you will know I'm off on my hols next week but I will try and blog before then but if I don't manage it you can all have a weeks rest from my rants as there is no internet access at the hotel, aren't you all lucky??

So then, what do you all think of William's first performance? Please be kind because if you scare him off I'll be coming after you to take his place.

See Ya!!

The Tooth Fairy.

 

Well in fact I mean the cause of the tooth fairy having to come, my other favourite healthcare professional, "The Dentist" or as I like to refer to them as "The Butcher". As the few followers of this blog will recall I had to, in the run up to having my Stem Cell Transplant, have a lot of teeth out at once due to them being a high risk of infections. If I remember rightly it was something like, 7 out in one sitting and then 5 out in another sitting a week later and all under Local Aesthetic as I was too weak to be able to have a general. Not something I would recommend as a hobby for anyone. Well since then I have been left with 4 teeth and 2 dentures. 2 teeth on bottom in front and 2 on top at the back. The front ones were ground down a while ago and have not caused me any trouble but the top 2 however have been slowly crumbling in front of my eyes. Well finally after 2 previous attempts I managed to get in on Tuesday to have them out. It took some arranging as I needed to have steroid cover, anti-biotic cover and also some oral sedation because to be honest after the mess they made of me when they pulled the others out just to get me in the chair would not be possible without it. So, I arrived as asked a good hour and half before my appointment time because they need to give you these things an hour before treatment and sat there waiting. After 30 mins when I asked the receptionist why I hadn't been seen yet she just said "ell you are a good hour and half early, so you will just have to wait". I politely told her, in my own subtle way of course, that they had in fact told me to be here this early for the treatment so it was THERE FAULT!! A few minutes later I was called in. There I was faced with this foreign, I think she was from the Middle East somewhere due to the accent, student dentist, who I could not understand because of the accent and the fact that she spoke really quietly. I'm afraid that when she asked for my medical history she pushed just that bit too hard. Why is it that when nearly all doctors are sat there with my notes in front of them and after having read them too, want me to tell them my medical history. What, can't you read for yourself then??? Thankfully she did eventually say that a fully paid up member of the dentistry fellowship would be doing the extraction, which did bring a bit of a sigh of relief. So tablets down the neck and off to wait some more. After a rather painful Hydro-cortisone injection in I go to be faced with another Middle Eastern dentist, but at least he spoke a little better English and a bit louder too. 3 more injections including that awfully painful one in the roof of your mouth that makes your eyes water and a load of pushing and pulling and out they came in a few pieces though with one last stubborn root holding on for grim death before finally been brutally ripped from its hiding place. Because of the problems in the past he thankfully put a couple of dissolvable stitches in to close up the gap a bit which should help. It has been giving me a bit of pain since then but nothing major and besides the size of them told me it wasn't going to be plain sailing, but I will add that it has not managed to stand between me and my bacon sandwiches which would be simply outrageous and unacceptable.

 

Okay I'm off for now, but hopefully the next blog on here would have been typed by one of the willing victims, I mean volunteers from the cadets who will be over later. His name I believe is William but everyone calls him Bill or Bob and I think he's not keen on William. So guess what he will be known as around here?????? HA HA HA!!!!!!! He is the second Lamb to the slaughter this week as I had someone turn up earlier in the week, but I was not too well on the day and as a result we never did one. Still there's always next week, if she comes back that is, because she did sit there and have a read of the blog and has probably scared her for life!!

 

See Ya!!

Back down that old trodden path again!!

 

This last few days I have once again strayed from the "Normal", if there is such a thing for me??, path and headed down the other one, you know the one I mean, where all things positive turn miraculously into negative and where trivial little irritations get blown up out of all proportion. In the scheme of things this is quite minor but none the less equally annoying. It's not been brought on by anything in particular but more so a culmination of lots of small annoyances such as the car and the lack of a bedroom/bathroom still and there's obviously the hot topic at the moment, your friend and mine, the one and only, Spell caster Of The Year 1978, Merlin. I guess if I had the time and felt extremely annoying then I would list all the tiny little other things that all together end up directing me down this bloody road but I don't particularly want to scare off anybody that's still remotely interested in reading about my rantings. Do you know, I wouldn't mind so much if the view along this road was halfway descent but it is far from it. It's more like driving through a dark, damp, dead straight, humungously long tunnel, but every now and then you can see what looks to be a light at the end of it. I seem to then go in slow motion towards it, in anticipation of this being the chance I have to break out, back into real life. Quite often though things are not always as they seem. It's a bit like the oasis in the dessert, because as I get nearer and nearer to the light and I begin to ready myself for normal life the damn light speeds up and then very quickly zooms past me, leaving me in this bloody tunnel for some more turmoil with only a view from my internal rear view mirror of some poor soul's backside screaming off down the same road I've just travelled. Occasionally though I do manage to get to the end and re-appear back into society a changed human being, not always for the better though as some of you might say, but changed from the experience none the less.

 

So, where does this leave me now?? Well, I suppose another couple of kicks up the bum from any interested parties will eventually do the trick and jettison me back to reality, let's hope hey??

 

Some good news too so life's not all doom and gloom, I am booked in for a spell of the old favourite, "Respite" in a week or two, but this time with a huge difference. I am going to stay, for a week, at the lovely "Jane Hodge Hotel" in Cowbridge which is not only a Hotel and Leisure Complex instead of all the other respite centres which are set up more like Hospitals, but this place is absolutely outstanding, so I am very excited at the prospect. I will hopefully write a piece on it in the next few days as we went to have a look around the other day and in fact Judith said to me, "You can blinking stay at home and I'll come in here instead".

 

See Ya!!

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!!

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!!