Guess What I Got??

As you may have gathered from the last few posts I have been sort of exited you could say about picking up my new chariot today. I made sure I had an early night which to be honest was a complete waste of time as It just meant I had more time to lie there and not sleep. I managed to force myself to stay there till 9am as I knew that as soon as I was up I would be wanting to get down the garage and it wasn’t arranged till 12 o’clock. So I slowly took my pills and watched a bit of news whilst pretending to not look at the clock every 10 minutes. Finally at around 10.15 I dragged Tara and the boyfriend of to have some breakfast in Tesco’s on the way to get the car. I thought at least it will pass some time away and keep my stomach quiet.

Well suitably stuffed with bacon and eggs etc we headed off to get it. In we went to be greeted by one of the other salesmen as the one we had been dealing with had a day off. He asked us to take a seat and he would grab the paperwork and go through it with me in a minute. I had already grabbed an eyeful of my gleaming new chariot parked up outside waiting for my undivided attention. He finally came back saying that i could have the car that was no problem, but I couldn’t have it till Monday morning.OH NOOOOOOOOOOOOO!!!!!!!!!!!!!!!! He explained that he needed to contact Mutability to get final authorisation and they had told him that as it was an early termination they had to wait for the cheque to clear which takes up to 10 days. Well I had all this out the other day with the lovely lady at motability the other day who assured me that all could go ahead and besides that the money had actually come out of my account 3 days ago. He said that armed with this information he would give them another ring to try and sort it out. He came back once or twice to ask me more questions then finally came back saying that it was okay for me to have it today and they will make an exception in this instance. PHEWWWWWW!!!!!!!!! You’ve never seen anyone sign paperwork so quick in all your life just in case they changed their mind. After handing over the keys to my old motor I drove off being the proud owner of a brand new shiny silver chariot the envy of all. Well maybe not to everyone taste but that’s me all over.

I decided that as we were out I would take it to Tesco’s to get used to it as it will probably spend a fair bit of time there off and on. It seemed to fit in the parking bay like a hand in a glove. I sense a loving long term relationship there.

Just to check out the car’s various bits and bobs I took the long route home and revelled in the comfort and quietness of it. New cars are great, all clean like and no creaks or squeals. Not a bit like me Ha Ha Ha!!!

Right I’m off to watch some footy as I was deprived yesterday with there not being any on only repeats.

I am one happy dude today!!!!!!!!

See Ya!!

Another Fine Day!!

Well things are still moving in the generally upward and onward direction which is pretty cool, so for god’s sake don’t anyone say anything to upset me!!! I’m beginning to relax into this latest me which I am beginning to feel quite comfortable in and like we have been buddies for ever and ever!!..

I really must sort this staying in bed till lunchtime out though. Ever since I got this bed I am finding more and more that I am having to tear myself out from it around 12 o’clock midday and if I had my way I would probably stay there all day. I am not managing to get to sleep till maybe 3 or 4 so it’s not as if I’m having way too much sleep just that it’s later on I suppose. Mind you when I do eventually get up I feel like I’ve had a good sleep which can only be a good thing.

I’ve purposely not planned to do anything at all today apart from saving up all my energy for the big day tomorrow. For those of you who may have spent the last few days on the moon and incommunicado please let me explain. It’s no big deal really just a little trip into Cardiff about 15 miles away to pick up something. MY NEW CAR!!!! I tell you what I think even that bed is not going to be enough to make me go to sleep tonight and there is no way I will still be in it at 12 o’clock. I plan to just take it easy for a few days and just show it the local sights and places of interest such as Tesco’s etc… as I need to break the news to it slowly that its going to be taking us to Scotland and back next week, poor thing!!

Most of the day has been spent watching the local wildlife namely all the local cats and birds frolicking in the glorious sunshine out the back garden. I find this quite relaxing and peaceful and besides, 2 of the cats that live next door, although you would think they lived here the amount of time they spend over here, are only youngsters and spend most of the day stalking and pouncing on and jumping at anything that moves. It’s pretty cool, back flips and all!!

Dare I say it my chest and skin have been manageable today. The painkillers are doing their job and I guess for once the creams and potions are too, all is not doom and gloom see???

I actually watched a little from Wimbledon this afternoon which was weird on my new huge screen TV, jeeez my neck is hurting now all that back and fore stuff is no good for you.

Penelope if you happen to be reading this I can pretty much guarantee that I will not be coming in this weekend as I will be far too busy playing with my new toy to catch some sort of infection. So you can let your lovely angels know they are safe to breathe away as normal. By the way what should I do if I have a temperature of 39.9?? ONLY JOKING!!!!!!!!!!

See Ya!!

Is It Safe To Come Out Yet??

I’m wondering if it is safe for me to return this planet after my latest adventure’s away. I’m finding it a bit difficult slipping in quietly through the back door being the clumsy oaf that I am, whenever I try my hardest to be quiet I actually make more noise than normal. Me Normal????? Ha Ha Ha!!!!!

Couldn’t blinking sleep at all last night which is quite strange as since I’ve had this new bed the problem is not so much getting to sleep more like getting up in the morning as it’s so comfortable and I have drag myself out lunchtime or I’ll just stay there all day.

I got up this morning though rather more full of life than I’ve been recently which was surprising due to the lack of Zzzzzz’s. I was still in some pain etc although nowhere near as bad. Things may well be going in the right direction. Do you know what?? I hate to start to feel all negative like, but as I’ve been through the doldrums again recently, when things start to look better it takes a lot to truly convince me that it is happening and is not just a crazy thought going through my mind at the moment. That’s quite a strange feeling in that its like I don’t trust myself to have nice thoughts and feeling anymore. Is that weird or what??? This time however I’ve decided to hell with it I’m jumping on for the ride however long or short it lasts as it’s about time I had a bit of fun and laughter, that is apart from the usual wails of hysterical laughter that I omit each morning on the way downstairs when I reach the full length mirror and catch a glimpse of myself!!!!!!!

Thanks to you all for your wonderful comments, you all seem to have the knack of saying the right things at the right time which is uncanny really, you all must be related I recon?????

Right then on this the first day of the rest of my life filled with only joy and happiness I headed off to Heath Towers for the next Zapping with the All Powerful Magic Rays in the Tardis. After having to sort of hang around / loiter for a while waiting for one of the many (NOT) parking spaces to become available I managed to get to the department only 5 minutes late, bearing in mind I would have actually been there 15 minutes early if parking was available that’s not too bad. As it happens they were running a bit behind anyhow so I had to wait 20 minutes or so before diving in the bath to start the treatment etc. The nurse was a bit worried that my skin was a little red this morning and decided to leave the dose as it was last time and not increase the time. It seems know matter how many times I tell them that this is my normal skin complexion and colour they just don’t believe me. Ah well it’s not going to spoil my mood and I just get on with it. After having body pulverised with the Magic Beams I set about plastering on all the creams and potions which to my astonishment was nowhere near as tiring as usual. Hey I’m beginning to like this new me and could quite get used to this!!!

Well after telling anyone who was willing to listen and a load more that weren’t that “I’M GETTING MY NEW CAR ON FRIDAY”, I headed off back home to take Tara down the local tip to get rid of a mere smidging of junk that she has built up over time only to be replaced with more junk I suppose. As long as the bedroom door closes then at least it’s out of sight. She had to get it done today or tomorrow as you didn’t expect me to have let her fill my “NEW CAR” with all her junk did you??

Arggg I’ve just noticed that there’s no football on the telly tonight. That might just make me fall back into dark zone again. Oh!!! Thank god!!! Just found some re runs and highlight programmes on so that’s okay.

Right I’m off to plan the rest of my viewing pleasure for today, catch you all later.

See Ya!!

p.s did I tell you “I’M GETTING MY BRAND NEW CAR ON FRIDAY”???

Ah That’s Where You Are!!

Is it really that long since I last blogged?? It only seems like it was yesterday too. To be honest with you I haven’t even turned the computer on for days now which is highly unusual for me as the thing is usually permanently on. I just haven’t felt like communicating with the outside world at all and so I have locked myself away in my little kingdom apart from the odd visit to Heath Towers for either PUVA or to see the Wizard. Would you believe it I’m up to 40 seconds in the Tardis now? I’ll have a lovely tan in a couple of years at this rate!!

This latest chest infection is proving to be a stubborn bugger and taking it’s time to totally clear up. I’m still chesty at times now after finishing the latest load of happy pills. As you may well have guessed by now my skin is still as bad although in saying that I do have days when it is a lot less itchy than others but not by a huge amount though but I guess it could be seen as an improvement. As far as the Wizard is concerned there is not much to report really. Things are progressing as expected and he is still waiting to hear from the Specialist at Brompton Hospital about the possibility of having a Heart & Lung Transplant at some stage in the future. To be honest the thought of having to go through all that is quite frightening but it’s the end result which would inspire me to get through it. Just the thought of being able to breathe normally again is such a Luxury for me at the moment and completely out of my reach. I am coming up to levels of Cyclosporine (immuno suppressant) where I begin to be sick so I’m not looking forward to that progress but if it works in the long run I guess it has to be done really doesn’t it??

All’s going well on the car front although I had begun to start to worry a bit today. I had sent off all the required paperwork to Motorbility last Tuesday and was told that I would receive confirmation to go ahead and place an order with the dealer for the new car when that arrives. The deal I had on the Chrysler which is only a £500 deposit has to be taken up by Friday of this week because after that they move into the next quarter and they have been told that it will be going up to around £1,500 which is out of the question for me. So when I hadn’t heard anything from them I rang them this morning. She informed me that as I had paid the £50 by cheque as they had asked, it’s their policy to wait for 10 days for the cheque to clear before they authorise the new car which would make it into next week. I explained the situation I was in and could I make a payment over the phone with a debit/credit card as although the cheque was in the system I would still rather loose £50 and get the car instead of loosing the car all together. She put me on hold for a moment and no sooner had she done that she was back on the line with the great news that they will make an exception in this case as the deposit jumps so much they don’t want me to loose the car for the sake of £50 and a few days, and I could go ahead and contact the dealer to arrange delivery of the new car etc.. I did happen to check my bank online whilst I was on the phone to them and the cheque had actually come out of the account yesterday anyway. So straight down to the dealership in Cardiff to finalise all the paperwork etc and I will be picking it up on Friday Lunchtime Yipeeeeeee!!!!!!! Lucky bugger that I am as the exact car in the colour and spec I want is sitting out the Back of the dealership already so they don’t have to wait for it to be shipped from elsewhere, they just have to get it all the usual checks and cleaning etc then it’s all mine. I cant wait now and it’ll get a good christening alright as we are off to Scotland a week Friday for the Family Wedding of the Century so that’s half my yearly mileage allowance used up in one go. I’ve been looking forward to this wedding for almost 2 years now and wouldn’t miss it for the world in fact there has even been plots arranged to come and kidnap me, bed & all from Heath Towers if I am taken in for some reason.

I went to see the delightful Sarah (councillor) this morning too. I haven’t been able to see her for ages either due to me being in hospital or her being on the sick so to be honest there was a whole heap of garbage dumping to be done today. I find these sessions really do help as although family and friends and nurses and doctors all help in their own special way I still after all this time find it quite difficult to be completely open in what I share with people. I know some of you might find that hard to believe bearing mind some of the previous blogs have been very blatant and revealing etc but some things are only said during these sessions which I don’t wish to burden on anyone else. Her expertise is in the field of bereavement counselling but when you think of it a lot of what is going on in my mind are thoughts of loss as I have talked about in the past on here so she has a lot of tools to be able to help me. Besides all that she is a sweetie anyhow and I just love having a natter.

Dare I be so bold as to suggest that the mood is slowly lifting from the darkest recesses of the last few weeks and things might, just might be turning in my favour at last and all is not doom and gloom???

I won’t be sucked into that one. One day at a time Jonny Boy, one day at a time!!!!

See Ya!!

What lovely Weather!!

Hasn’t the weather been great for a few days now? I much prefer it to be like this than all damp and dreary and stuff although in saying that I don’t like it too hot. The heat only adds to the problem really with my skin making it even itchier than usual and somewhat more painful too. I have to be a little careful too about not catching a tan so it’s a case of long sleeve shirts and I do draw the line at wearing long trousers as I find shorts are so much less irritating on my skin as they allow air to circulate a lot better.

Stupidly I have slipped back into this latest depressive mood again over the last few days but I seem to be coming out of it again anyhow. I’ve got an appointment planned in the next week or so to see the lovely Sarah which always helps and I really am beginning to need it more than ever right now.

The latest chest bug they found seems to be being sorted out by the antibiotics they have given me which is a good thing and as per usual the skin is not behaving itself at all. The one bonus I suppose is that for once the pain killers I am taking, Oxycontin slow release and Oxynorm if needed in between, are working. I had tried them in the past for this pain with no effect at all but for some reason it is working it at the moment so fingers crossed they will continue to do so. The downside to these pain killers though is that it does tend to make me quite drowsy at times and somewhat, how can I put it?? Spaced out I suppose you could call it.

PUVA is back underway at last too and I went for my first treatment last week. I hope to be going twice this next week. I’m up to a staggering 27 seconds now too, it seems like an eternity. I think I might have problems when I end up having the full dose, as in 2 minutes because, the tubes are only about 6ft tall and I am about 6ft 5ins so I have to like bend my knees so that I get the tanning effect on the top of my head as it would look strange otherwise. This is not a problem at the moment but I think I will find it very hard to hold this position for a couple of minutes as I just have no strength in my legs at all.

I had an interesting day on Thursday. I dragged Tara around all the local car dealerships in Cardiff looking for a new car for me. I have a car on Motorbility at the moment which has a manual gearbox but because of the problems with my skin and stuff I am finding it increasingly harder to drive as in change gears etc it is so painful when stuck in traffic and having to stop and start all the time. I have decided to look around for an automatic car, still on the Motorbility Scheme too so I will have the benefit of free insurance and servicing and breakdown cover etc.. I thought I might have problems as I still have a year left to go on this contract with Motorbility but apparently I have to pay a fee of between £50-£250 and then I can take out a new one for another 3 years. The problem with getting an automatic is that they tend to be bigger and more top of the range cars and as a result require you to put down quite a large deposit which I find is a bit of a waste as the car will never be mine so it’s like throwing away my money really. It has also to be a medium to large size car too to be able to fit the wheelchair in the boot and I also don’t want one that it fits in but the parcel shelf wont be able to go on too as that’s a bit like what we have now. So poor old Tara was lifting the wheelchair in and out of about 20 cars as well as pushing me around in the meantime, her arms were aching like hell afterwards ha ha ha it’ll do her good in fact she ought to pay me for letting her use my wheelchair for her fitness training. I’ve narrowed it down to about 3 different cars at the moment although I am more steering towards one which is a Chrysler PT Cruiser. I have always liked the quirkiness of this car. It always reminds me of an American Hotrod. I know that without the help of Motorbility I would never be able to afford one of these and even I suppose if it was my money paying for it I would probably never go for it but I look at it like this, that it’s different and unusual and quite rare around these parts and its got a huge engine and all the toys you could ever want to play around with, so what the hell live dangerously!!!

Okay back to the deepest darkest realms of my world for some more contemplating of life’s great mysteries.

See Ya!!

Hi guys still the same!!

Hi there fellow web people and the odd nutter who happens to have just been passing bye. I would make a run for it whilst you got a chance.

I really, REALLY, haven’t felt like even turning the computer on now for some days, never mind writing this blog. I must thank you all for you kind Emails of support and well wishes etc. I have just spent the last half an hour trawling through all the Emails and stuff as I think I must have had about 100 odd to get through including all the junk ones too offering me all sorts of weird and wonderful drugs to help with my performance etc, what they trying to do kill me off or what??

I had a phone call from one of the Trainee Wizards yesterday to say that they had found a nasty in the sample I gave them last Monday and the anti biotic I was on needed to be changed to Augmentin instead. Thankfully he rang my GP surgery for me to get them to sort out the prescription for me which they did thankfully. I went and picked them up from the chemist today as they had helpfully faxed the script straight through to there for me to save me one trip. See they can be nice when they want to be.

My skin is still pretty horrific. It seems to be getting tighter by the day and the itching is just so bad at times. I have to make sure my nails are constantly filed down smooth or else I end up scratching myself to shred’s. The PUVA is starting back again tomorrow as I had to cancel all last week’s appointments due to just not being well enough to get there. I’m hoping to be okay tomorrow and have planned to get up to see my mum and dad and sis afterwards for a cuppa which will be nice. My mum is having a bad time of it pain wise at the moment due to some blinking doctor who decided to try pinning the tail on the donkey when he was supposed to be giving her an epidural a while back. Since then she has been in loads of pain and I know some of what she means too as I’ve had my share of epidural’s and bone marrow samples from my spine too. All is well if it’s done right first time although there is always some discomfort involved but if they get it wrong then you are into the realms of severe pain and discomfort. With me its more like quite bad back ache rather that pain which in itself causes a bit of a nightmare when it comes to pain relief as it needs like constant supply which is at least where MST comes into its own I suppose. The down side is that it can have an effect of making me a bit drowsy especially when taken with a glass of sherry Ha Ha!! ONLY JOKING HONESTLY!!!!!!!!

At last Tara is doing her last exam tomorrow so she has volunteered to come with me for hospital visits and shopping etc.. which is really going to help as she can push me around in the chair apart from the fact we can spend some Father And Daughter time together which will be nice.

The nearer it gets to July the more ancsious I am getting about picking up some nasty bug or something. We are going to Scotland to a family wedding which has been planned for a year or so now. We have been looking forward to it for so long now it will crucify me and everyone else come to think of it if I wasn’t able to make. They have threatened to even come and steal me from Heath Towers with my bed and all and put me in the back of a transit van and take me there if need be.

Right I am knackered now. I am off to watch a bit of footy on my new telly. I will try and keep you up to date honestly.

Thanks again for all your thoughts and kind wishes I do really appreciate them all.

See Ya!!

Strange Sickness!!

*** WARNING THIS BLOG CONTAINS SCENES OF A NATURE THAT SOME PEOPLE OF A SQEEMISH NATURE MAY BE ADVISED NOT TO READ.....YOU HAVE BEEN WARNED.....READ ON AT YOUR PERIL***

I woke up yesterday morning in a much better mood after all that’s been going recently. I also felt a little better physically too. The itchiness seemed to have eased although the tightness was still an issue, but hey I can’t have everything now can I? I felt so well in fact that I was planning to go out to my favourite store for some fresh supplies. Well as usual started off the day with all the pills and potions which seems to go for ever and ever. 3 of this one and 4 or this one etc… why don’t these people realise when they are dispensing the tablets from the pharmacy or chemist that its no fun having to take 4 tablets to get the right dosage instead of just taking one. I know there are a lot of drugs that only come in smaller dosages so to speak but when there are larger ones available they still give you the small ones Grrrrrrrr!!!!! Actually a couple of months back when I was, I can’t quite remember the dose exactly but it was around 100mg Prednisalone. They gave them to me as usual in bloody 5mg tablets so I had to take 20 of the blinking tings every morning when I know for a fact they also come in 25mg dosages as well which would still mean taking 8 but not as bad. Lucky I checked whilst I was still in the pharmacy and had a right go at them. They went off and lo and behold came back with the 25mg pills. Why didn’t they just give me them in the first place I asked and the reply was “We just didn’t think”. I just love responses like that it’s almost as bad as saying “I don’t care” to me.

Right there I go again right off the point. Back onto the real story now. As I was saying I was planning a trip out. I usually wait for a while after taking all my pills as the sudden movements etc sometimes make them churn around a bit too much with not very nice consequences. Well after an hour or so I started to feel quite queasy. I rushed for the thermometer as usual just to see if anything was untoward, but no my temp was spot on. It sort of just came from nowhere. I was quite dizzy with it too so I went through my oils to see just in case I had taken something I shouldn’t have or too much of something but no all was fine there too. This was strange indeed. I know the pills I’ve taken wouldn’t have caused this, well when I wouldn’t cause it, they all list dizziness and nausea as side effects but I’ve been on them for ages and they have never caused me any problems. So, I went through my drugs box or should I say one of my drugs boxes as I have 3 at the last count and they are all about 18” x 12” x 12” deep as I have so many pills here, I really must sort them out and take some of them back but I saying that at times like this when I need that something different at least this way I have them here. What I was after was some anti-sickness in the form of Cyclasine. They usually work quite well for me son I popped one of them down the old pill chute and just waited. They usually take around 30 minutes or so to do its thing. Well 10 minutes and I was sprinting like Colin Jackson to the loo and thankfully just managed to make it in time before what looked like the complete contents of a pig trough erupted from my mouth. It went on for ages and ages so much so I had to keep flushing the loo in order not to block it up it was that bad. Where in the hell did that come from??? I managed to make it back to the safety of the arm chair eventually and actually felt a little better by then. I decided though that it might not be a wise idea to venture out as that came on so quick that I don’t think Tesco’s would appreciate it all over their shop floor!!!

I seemed fine for a couple of hours and actually felt starving so had a bite to eat. All was not well though as not long after I had to make a dash for it again. Don’t this bloody thing know I’m no good on my feet or what???? Do you know I didn’t think I had that much room for all of this to be in there. Thankfully it seemed to ease again after that and although I felt a bit weird most of the evening I never had to run the gauntlet again last night.

When I woke this morning I still felt a bit strange but not to the extreme of yesterday though. I managed to venture out with Tar and her boyfriend Luke to do the weekly shop. It was quite strange too with Tara having to push me around in the Wheelchair whilst Luke had the job of Trolley Dolly as Tara put it Ha Ha!! It was way too warm out today so I tried not to stay out too long as I find the sun and heat are really hard work at the moment and the heat especially makes my skin itch a lot more than normal which is not a good idea.

Right off to watch Sam get booted out on Big Brother. I know I’m sad but I don’t have any other vices so please allow me this one. It’s like watching the monkeys at the zoo really.

See Ya!!

Sad & Glad

Well then peeps you’ll all be glad that the head seems to be getting back to normal. Well when I say normal I guess its normal for me but anyone else would probably be sectioned under the mental health act. I don’t quite know what has caused this sudden U turn but hey what the hell who cares?? I seem to have from somewhere regained the fight that I’ve been talking about. Maybe it’s because of all your kind words of support etc I don’t know but I’m not going to dwell on it any longer.

For those of you that are observant you would have noticed the UN godly hour that I have posted this. Bearing in mind I probably got to sleep about 4am and have been up for about an hour now I suppose I have had an hours sleep. So when I am awake everyone else should be awake, so it’s TV on Stereo On Blender going nineteen to the dozen doing the Banana Smoothy etc etc… I pity Judith who is trying to sleep through all this as she has to get up in an hour or so to get ready for work.

That’s weird I just looked out the French Doors and there is this like mist that has suddenly descended from nowhere. It was glorious sunshine about 5 minutes ago, not that it makes much difference to me as I don’t have any plans to go anywhere today as I’m still suffering from this Flu like thingy.

For some strange reason when I did awake from my slumber I had this uncontrollable urge to write about all the things such as adaptations that I have had to have because of this dreaded lurgy. I know you’re all thinking “what the hell are you thinking about for you Muppet” but I gave up trying to work out why I come up with these things years ago as I found there was no use as my brain was frazzled anyhow. Well here goes then:

Let’s start with the wheel chairs. It was decided that I would need 2 wheelchairs. One for general use as in moving around downstairs and going out on day trips etc etc and another Lightweight one (that’s a laugh as its about a pound lighter that’s all) for upstairs use. These as you early Bloggers will remember I had to wait about 3 months for as a result of our highly efficient (NOT) wheelchair allocation system. Well I move on now. Next on the list is the 2 toilet seat raisers. There like a plastic contraption that fit o the toilet seat which means I don’t have to struggle to get to my feet after doing the job in hand so to speak. They are a good idea apart from when you want to just stand and have a pee as the target is somewhat smaller that usual. God listen to me ranting on about peeing etc, there ought to be a law against it!! Okay next on the list is a step that had to be built outside the front door so that I could actually get into the house as that was proving difficult at the time. Next in line I guess would be the 2 walking sticks. These have proved to be the most important and well used equipment of all. Because of my height (6ft 5 in) they had a bit of a problem getting a pair long enough in the beginning but thankfully they soon sorted that out. I guess bringing up the rear would be the put me up bed as when times have been bad I haven’t been able to get upstairs at all sometime for weeks on end. We did at one time look into getting a stair lift installed but when they told us that we would have to pay around £2000 and that was with a grant too we decided against that idea.

I guess in the grand scheme of things I haven’t done too bad. At least I haven’t had to have any major alterations done to the house etc which would have obviously been a right financial burden.

Right. Writing this has started to make me feel a little sleepy so I’m off to see if I can catch up with the dream I was having earlier.

See Ya!!

Just A Few Things!!

As I have said the last few days have been a bit hard and as per usual a lot of the things going around in my mind are sort of connected with loss of some sort. Things such as loss of independence etc etc. so I’ve used up today’s blog to list all the various medical conditions that have been bestowed on me in the process of keeping me alive for the last 2 ½ years since diagnosis.

Here goes then. Are you sitting comfortably?

Lungs

My left lung is working at around 10% capacity and my right lung is working at around 75%. This is mainly down to a rather nasty virus called Pseudomonas I picked up when I was in hospital and going through my first lot of Chemo. This virus has colonised my lungs due to not being treated effectively from the start and out of all the many frequent trips into Heath Towers for a rest this is by far the main cause and probably around the region of 85%. There is also a possibility that the Chemo has had some effect as in making it worse as there is also evidence that this is a side effect. The chest consultant has never really been able to give me an accurate diagnosis and in fact I think I must be on about the 10^th diagnosis to date ranging from a Budgie borne disease to Asthma. The condition of my lungs will never be any better than they are now and in fact will probably determinate further in the future and the best to be expected is to learn to use what capacity I do have to the fullest.

Skin

Well where do I start. In this skin part I also include the loss of hair etc too. As a consequence of Chemo you obviously loose all your hair, well most people do. The problem I have is that due to the GVHD that I have had off and on since transplant has damaged a lot of my hair follicles, so much so that I will probably never be able to grow hair on around 80% of my body. Then there is the skin tightness that I am suffering from at the moment badly, again caused by GVHD which if you have reading my musings you would have all the gory details so I won’t put you all through it again I’m not that cruel. I guess in this section I could include the nail problems too. I have found that all through the treatments etc my finger and toe nails have become really brittle and also prone to splitting and always annoyingly right down the middle. In fact just having a quick look now I currently have 6 split finger nails and 5 toe nails too. I do apologise to all of you eating your dinner reading this and thinking about my manky toe nails but you should know me by now and not be anywhere near food whilst reading this its really bad for your health.

Hearing

I have also suffered permanent hearing loss which has been put down to both the Chemo and also the long term use of Prednisalone (steroids), so much so that I now have to wear 2 Hearing Aids. My left ear is the worst with around a 70% loss of High Pitch and 30% loss of Low Pitch Hearing. My right ear is not that much better mind you with a loss of 60% High Pitch and 25% Low Pitch hearing.

Heart

The problem with my heart is that the Left Ventricle is only currently working at around 20% although the right hand Ventricle is around normal. This has again been put down to the Chemotherapy treatments I have had. This again is a permanent loss and I am on medication for life to try and make the right hand side work more efficiently to make up for the lazy left hand side as well as stopping it actually growing in size which will make it less efficient. This does cause me some major problems with my breathing as it doesn’t take much to make my heart start to race even things like walking from the sofa out to the kitchen etc and when it starts to race I find it hard to breathe properly.

Teeth

Just prior to transplant you have to go through this sort of total body check up and as part of this you have to visit the Dentist. The main reason is to see whether there is any risk of infections from decaying teeth which might cause problems during transplant. Now I have always had this dreaded fear of the dentist and as a result my teeth were in a bad way really. I was gob smacked however when the result was that they decided to take out all of them except 4 on the lower jaw and 2 on the top Argggggg! They took them out in 2 sessions and it was not a very pleasant experience let me tell you as due to the poor state I was in they would not do it under general anaesthetic but only local. I suffered for months afterwards with a constant socket infection which stubbornly refused to go resulting in loads and loads of return visits and various bone extractions and gum stitching. They have kindly now given me a complete set of my own plastic teeth which took ages to arrive and then get used to.

I think that’s about it although I know me I have most probably forgotten a few things along the way so I might end up adding bits and pieces at times.

I know when they start you on whatever treatment regime or Protocol as they like to call them, they tell you all about the possible side effects that you may or may not experience but I didn’t expect to get every bloody one of them. In saying that though the choice of maybe living for maybe just another 2 weeks or taking the Treatment on offer I guess there was no choice really. The Chemotherapy has by far caused the majority of my conditions whether it has been directly or indirectly but without it I wouldn’t be hear writing this now so I suppose I should be grateful really although that’s quite hard especially at the low times when I am just looking at someone to blame I suppose. I guess I tend to think at these low times too that I haven’t lost these various things but they have been robbed from me against my will which is quite a different thought all together.

Jeeeeez I didn’t realise it would go on this far you poor sods having to keep scrolling down, I do apologise and I promise that tomorrows will be a nice short one to make up for it. NOT!!!

See Ya!!

Not A Good Day!!

I woke up this morning feeling really under the weather. I felt like I was bunged up with a cold, runny nose, sore throat, coughing up loads of lovely matter that no one should have to look at YUCK!!!. I had an appointment as you know at the PUVA department so to speak before going to listen to the latest musings of Merlin. I really didn’t feel up to going for PUVA so I phoned up and explained how I was feeling and cancelled for today. Hopefully I will be able to make it either Wednesday or Friday I have to ring them to re arrange. I did however keep the appointment with the Wizard as I was hoping he could give me one off his special potions to cure this latest ailment. He was obviously pleased to see me as always although I think he soon wasn’t when I mentioned that I was pretty bad at the moment as in not just the skin thing but the recent start of coughing up that nasty stuff and runny nose etc… I did tell him that at least my temperature is still normal so I have no fever as such. He did the usual thing of informing me that if it does go up I have to come in straight away which I know anyhow but I guess he wouldn’t be doing his job if he didn’t tell me. He’s increased the dosage on some of my medications and also added in another anti biotic to deal with this latest cough etc which hopefully will do the trick. The swine decided to punish me then by sending me for a Chest X-ray which meant having to wait around for a porter to take me there as there is no way I would have made it there alive in my state. Then when that was done I had to walk the some 100 yards back to the Pharmacy department for the drugs and then get them to phone for a porter to take me back to the car and when you have to wait at least ½ hour for each porter it becomes a real nightmare.

On top of all that I really feel down again today. A lot is to do with not feeling too well at the moment but I find when I start to get down all the negative feelings start to come back. Things like the lack of independence and the feelings of worthlessness etc suddenly become big issues. Also I find I become very emotional at times like this too and have sobbed most of the day too. I know I have joked in the past about it being my Little Sister’s fault by giving me here female genes but times like this I think there may be something truthful in that because I never used to be that I way at all. I think I will never really come to terms with the lack of independence as it is just part of me that won’t change but eventually I get forced into it by things out of my control. Judith always say’s to me to try and see it another way as in make the most of being SPOILT by being pushed around and not as negative. I know she is right in what she is saying but I’m just too blinking stubborn for my own good.

Some of my problems stem from when I was first diagnosed with Leukaemia, (do you know what I cant ever remember actually writing LEUKAEMIA at all in any of my blogs so far aint that weird??), well the prognosis I was given then if I went through with the Transplant from my sister was that I would be back to having a normal life again as in working and actually living again in 6-12 months. Well as you see here I am 2 1/2 years on and things in a lot of ways are actually worse not better. I must say that Judith has always said that it will take more like 5-6 years to be back to normal and she is a lot nearer in her estimation than anyone else I think. The thing is when you are that low and vulnerable so to speak you tend to cling on to anything positive that you can and to be honest a lot of people are like me and are brought up too think that the doctor knows best so what he says is truth so when they say that about the timescale thing I jumped on it thinking at least it is worth just giving up that much of my life then I can get back to normal etc. little did I know or the Medical Staff for that matter that I would end up with so many problems along the way and still today that to be frank I will never have what I used to call a normal life again and the only normal life possible for me now is full of compromises. I guess what I am trying to say is that my impression of normal before all this is nowhere near the same as my impression of normal now, also what I would have taken for granted before has become at times either impossible or a long term goal to achieve, things like walking more than 50 yards without getting out of puff and needing to sit down etc…

I guess the upshot of this is should the doctors actually tell you that. surely as this is actually not curable it is in fact for life as I know from first hand experience that even after 15 years in remission it can rear its ugly head again as a very good friend of mine Ron found out to his cost. God I really miss him at times still he was like a mentor to me and helped me all through my initial investiture into The Club Of The Baldies!!

I must admit all this negative stuff when I am having a good day, I see it as all positive and it actually spurs me to do more and try and push myself to get through this nut when like this last day or so I am not coping quite well it suddenly become all negative and bad and the worlds going to end etc… It is like I said to the lovely Cath who sucked my dry of my Red Goods at the clinic and also tortured me by squirting this horrible salty water up my hooter to get a sample, to which I repaid her by leaving her a lovely fresh sample of my infamous Slimy Green Chest Gooo, that “You Need Fight To Fight” and at the moment I am all out of fight that’s all. A short spell of self pity usually results in a new spark of enthusiastic self belief so keep watching this space for the new me appearing hopefully soon.

Till Then,

See Ya!!

Weekends Here Again!!

This week seems to have flown by and it’s the weekend already. I guess apart from the fact I quite often go shopping on a Saturday the only other difference is that I won’t have an appointment at the hospital to go to. Isn’t that strange the only time I used to think at the weekend as being different is when I used to work as that was always Monday to Friday so the weekend was very different and sort of a relaxing time.

Well anyhow as the weather was supposed to be lovely on Saturday we decided to go for a stroll around the Continental Market at Newport for an hour or two. Well what I mean by taking a stroll is that Judith will be strolling whilst pushing me in the wheelchair ha ha!! I love these sorts of markets and each stall is so inviting me to spend spend spend… this one was very busy too, due to the good weather I think, full of all things like Cheese’s, Meats, Biscuits, Clothing, Ice Creams, Soaps etc etc etc……. I was very well behave which is not like me at all and all I bought was 3 things. I bought a lovely Cream Coloured Chinese Embroidered short sleeved jacket, some Wild Boar and Stilton Sausages and also a Wild Boar Burger to eat there and then. The burger was quite disappointing actually and I hope the sausages are not when I get round to cooking them!! We spent a while wandering around then had a cuppa and made our way back home because all of a sudden I began not feeling too well. I came across all dizzy and felt a bit sickly too. Judith got me a glass of nice cold water which seemed to help a bit. I’m not too sure what caused it although it might be due to being out in the sun for too long as it really was hot which would explain how the water had helped. In saying that though I haven’t felt quite right for a few days and I have been coughing a lot more than usual today and yesterday and I have had this niggle in my throat of and on. Maybe I have an infection brewing although my temperature is fine. I will have to keep an eye on it and let the Wizard know when I go and see him tomorrow, maybe he can put me on some sort of antibiotic to prevent it from starting or getting any worse.

Talking about tomorrow I have to make a mad dash from the PUVA over to see the Wizard as I stupidly made the mistake of having them too close together. The PUVA is at 11.30 and the Wizard is at 12.30. Puva can take up to an hour by the time I finish putting on all the creams and potions etc after my 17 seconds in the Tardis and I have to get back to the car and drive over to the main hospital and try and get parked there which is usually a nightmare. Ah well I guess it will be fun if nothing else NOT!!!

All I hope is that the usual nurse is back in the PUVA department tomorrow as if the other one is there she will no doughty stop me from having it because I look a bit red or something. I think if she does I will suggest to the Wizard that it is pointless me going to the PUVA sessions as I quite often can not have the treatment done (when that one nurse is there) and besides that its all that hassle and it aint working at all so what’s the point really??

You know in saying that I recon I haven’t scratched my legs and stomach and back nowhere near as much today and come to think of it I haven’t had to put on any cream since first thing this morning either which I very VERY unusual indeed. Maybe the Cyclosporine is starting to work as it can’t be the PUVA as I haven’t had any for a week now??

Nah I won’t start thinking like that as I will probably wake up in the middle of the night with this eternal itch which just won’t go away as usual.

Still the fight continues my friends and in the words of my new found buddy it’s “Onwards and Upwards”!!!

See Ya!!

A New Approach!!

As I was saying yesterday about the skin tightness and the pretty severe pain that it is causing I decided this morning to retry an old Wizard Recipe from a while back. Instead of the usual tipple or two it involves taking a Slow Release Morphine Tablet twice a day. It’s quite a small dose and not considered to be that addictive. I have tried this in the past and to be honest it was just yet another potion that did not work so I ended up stopping it. I have taken it for other complaints or conditions etc and it has been quite effective and besides what do I have to loose?? Well I took it this morning along with my other hundred or so pills and waited patiently for it to kick in, well I tell a lie I actually fell back asleep for an hour as I hadn’t slept too well and believe me when I say “I REALLY DO NEED MY BEAUTY SLEEP”. I’ve got a lot to catch up on in the old looks department!!! After I woke up I went about pottering around for a while like making a cuppa and sorting out something to wear as I was going to try and burn rubber around Tesco’s this morning on the Scooter and it wasn’t for an hour or so that it dawned on me that I wasn’t in as much pain as usual. To my astonishment it did start to work. I’m not saying that it completely disappeared but the pain certainly had eased a lot. I noticed it more at times like walking back and fore the car and into Tesco’s and stuff the pain was quite bearable for a change. So I guess its fingers crossed that it might help at least for a while anyhow not that I will doing anything that strenuous as I still can’t breathe but hey a small improvement is an improvement after all!!

I decided to celebrate this small achievement by allowing myself a little luxury in the shape of a nice bottle of “Old Speckled Hen” ale which I haven’t had for ages and ages and am enjoying at the moment Mmmmmmmm!!!!!!

Right back to Big Brother to see who gets the boot tonight. I know I’m sad but I just can’t help it all these super ego’s fighting for attention it’s so funny!!

See Ya!!

Answers At Last!!

Remember I told you the other day about the problems I had trying to get Voriconozole from the GP instead of the hospital and all because it was too expensive?? Well when I was up my mum’s on the weekend we decided to look up some prices of my drugs and what an eye opener it was too!! One of the nebuliser’s that I’m on is about £3,000 a month or so and some of the others are in the hundreds per month too so there was no surprise that they refused although in saying that Voriconozole is not as expensive as the nebuliser.

I managed to get an appointment through the lovely Chris from George Thomas, she really is an angel, with the Senior Partner of the GP Practice this afternoon to get to the bottom of whether they can and would for that matter refuse to give me drugs on the principle of cost alone.

It was a very informative meeting of minds actually and helped to ease my mind a lot. The deal is that when I am given a prescription at the hospital and actually get the drugs from the hospital pharmacy then it comes out of the hospitals budget so to speak whereas if I get it from the GP then it comes out of their budget. The problem that the GP has is there are a number of drugs that for one reason or another the Local Health Board will not let them prescribe and even at times some drugs can only be dispensed by a hospital pharmacist and not a local chemist etc. He did not have any direct answer to why they may or may not have refused to give me the Voriconozole only that it cost around £1,000 for 28 tablets and because of its strength may not be available for him to prescribe and also the Local Health Board would refuse to allocate extra funding for such a thing.

The upshot of this all I think is to either get all the drugs prescribed at the hospital dispensed from the hospital pharmacy and all others that are already on repeat prescriptions etc from the GP if need be. It might be an idea when the Wizard prescribes anything new maybe to ask if the drug is expensive or restricted in any way along with the usual, does it make me sick?? How often?? Before or after food?? Etc etc etc…..

I am really suffering now from the skin condition. It really is getting noticeably worse as in I need to walk with a definite stoop,, hell in fact I’m almost doubled up in half to be able to walk which causes lots of lower back pain and still makes breathing very difficult. I know I am going up to see the Wizard next Monday and as usual I will bow down to his better judgement although in saying that I will stress the fact STRONGLY!!!! That this really is reducing the quality of my life beyond all recognition. It will be getting to the point very very soon that I will need to use the wheelchair for all things outside of the house meaning that I will need to be pushed around everywhere as there is no way I would be able to push myself, and as far as around the house is concerned, well lets just say the new bed I have ordered will be used a lot more than usual as I will have to stay in it a lot longer as getting up and downstairs will become too painful as well as too dangerous due to falling etc.. The very thought of loosing even more independence again is quite daunting. I know everyone is so lovely and can’t do enough for me but the thought of having to let them instead of doing for myself is hard at times. You know even things like my little trips to Tesco’s for my Stuffed Chicken Thighs from the Deli Counter and also looking for the reduced stuff will have to go. I guess there will be one good thing in that if I can’t get downstairs to cook I won’t keep raiding the fridge for snacks all day long and as a result I won’t put on as much weight in the process.

Besides all this I need to get out and about occasionally just to get inspiration for things to write to you lot about although there are a number of you who will be thinking Ahh a chance to get some normal thoughts for a change, I’m sorry to disappoint you people as I have a store of thoughts to use up in the meantime, probably enough to last at least the next Millennium Ha Ha Ha!!!! Tough Luck!!..

Okay after all that I’m off for a bit of Online Retail Therapy to cheer me up, let’s see how quick I can spend My Daughter Tara’s Inheritance Ha Ha Ha!!!

See Ya!!