Alls Well

All’s Well !!

Well been up the hospital today for my usual weekly Blood Tests etc and really it was quite eventful after last week episode.  I tried to pull a fast one really as I wasn’t sure whether my appointment was for 10.30 or 11.30 so I turned up at 10.30 and hoped for the best.  I was seen by about 10.45 and had my blood taken now it’s just the usual wait of about an hour. It was really busy there today so I decided to go back to the car to wait and have a bite to eat.  After sitting there for about 45 mind watching people parking in places there not supposed too and then just abandoning there cars for ½ hour or so.  See if that was me I would get clamped.  Anyhow got back to the Day Unit and it was still as busy so managed to get a stool from the side of one of them beds as there was no chairs left and waited for my turn with the doctor.  Well an hour and a ½ had gone past still no sign of it being my turn in the end it was nearly 2 hours after taking my blood that I was eventually seen, she really does have a lot of patients to get through as well as having to give advice to others and stuff I don’t know how she copes really, maybe it’s the Irish Determination in her. Well all is well my Blood counts are all fine so keep up the good work and see you next week.  In some ways it’s always a bit of an anti-climax when you come out because all that waiting around for nothing in some ways is quite strange.   So off back to Newport to meet up with Judith.  She was waiting for me and we had a natter out the back garden where it was safe because of the Mumps thing.  It was greatb to see her but strange as well because in some ways as it was all very clinical if you understand what I mean. No touching and stuff like being chaperoned.  The Prodigal Cousin came back when we were nattering so that sort put a stop on the moaning about,” well Daniels done this, Daniels done that”, get on your nerves after a bit in fact A LOT!!!  Well bloody good for Daniel.  I can see this is going to be a long week mainly spent in my Room or parked up in some park or something as I don’t think I can sit there and listen to much more without saying something and somehow I don’t think will like what I would say.  Right better get back Food is probably ready and I don’t want to keep them waiting now do I.  Do I sound ungrateful? I don’t mean to be honest it’s not that at all because I really am grateful for there hospitality and stuff.

Day out by the sea

Day out by the sea!!

Decided to go for a drive today as the weather was nice and it beats staying here all day playing gooseberry.  Headed off for Weston Super Mare about 40 miles away or so.  Typical Bank Holiday traffic bumper to bumper most of the way quite literally at times as I saw quite a few rear end shunts on the motorway. Some people just wont learn will they?  It was a beautiful day sun was out and a nice gentle breeze kept the temp just right.  Parking was horrendous all along the front as you’d expect really but I managed to get a spot a bit further around in I suppose the not so popular end of the prom away from the town etc.  I thought I’d have a little walk around but not too far as I felt really quite tired and short of breath today so no marathons for me!!  I grabbed a cuppa and some chips and sat on a bench overlooking the beach and was watching the kids playing about and having fun and yes wishing I could join them really, never mind I thought my time will come.  It was quite funny actually as the prom looked like a bit of a racetrack for them disabled buggies there were loads of them going up and down reminded me of a Drag Racing Strip.  It was really busy mainly Brummy’s  down for there weekly pilgrimage they seem to love this place for some reason.  God know why there’s not a lot there.  I guess it takes all sorts.   The Cousin has arrived and they’ve gone off for the day to show him “The Sights” that should take all of about an hour. A bit of company for them I guess whilst they’re watching the TV, Oh I must stop this and be considerate. Anyway I’m thinking of driving around the area looking for that connection and parking outside for an hour or 2 just to break the boredom.  See Ya Later.

It had to happen

It had to happen eventually!!

Well another non eventful day again that is apart from losing my Precious Free access to the Super Highway!! Sob, sob.  It was going to happen at some time or other I suppose but why now I keep asking myself, just when it was beginning to be fun, and I had a loud of Downloading arranged today, in fact I think it’s mighty inconsiderate of him to just cut me off like that.  I’m going to write and complain.  What am I thinking Nutter!!! But they do say the best things in life are free and I guess in this case they were right.  So I suppose it’s off in the car tomorrow searching the local area in case there is anyone else as stupid you never know it may be something in the water.  

Called into Asda for a few odds and ends and there was absolutely no one parked in the disabled bays so I can’t even complain about that.  Let me see has anything actually happened today that I can complain about!!!  No not really, what am I going to do my Blog is Collapsing around me Oh No !!!!!!
Maybe tomorrow will bring a couple of things to moan about, we live in hope.

Bit of a let down realy!!

Well after the events of the week so far, today has been a let down realy. In a Nutshell Nothing Happened, No Crisis, No Hospital, No Nothing. I spent the day thinking of things that could or might go wrong but nothing did and do you know what " I Was Bored Senseless" and didn't know what to do with myself. You might think to yourself that after the week i've had i would welcome a break, but i dont realy, I needed something to concentrate on, so slept off and on most of the day out of boredem. Internet connections still going strong and i'm furiously Downloading all i can before it gets cut off as probably it's only a matter of time.
Maybe i ought to take this time to tell you why it is that i decided to start this Blog and in fact why its called Disabled Rants.
One of my Pet Hates so to speak for years now, not just since i became Disabled myself is that of, able bodied people parking in Designated Disabled Parking Bays be it at the Supermarket or High Street or anywhere else for that matter. It bloody iritates me beyond belief at peoples attitude when confronted and they reply with things like "Well i'm only popping in for a minute" or "What do you need the space for yourself you look alright to me"
Another one is the Mass Abuse of the Motorbility Scheme by thousands of people who have no real need for the Service and must be costing the Tax Payers Millions of pounds a year in Benefits etc. Like a lot of things i guess the System is as much to blame as they Fraudulant Claiments and a complete overhall is needed. It seems thatnthere are a lot of genuine sufferers that should be entitled to the benefits that are not getting them when others who Blatently Play The System get away with it.
So because of these and a whole heap more issues that realy wind me up i thought i would start this Blog to air my views so to speak and maybe have some fun along the way. That Seal Bounce game in the Cool Games link is so bloody addictive it already responsible for giving me bags under my eyes.
Anyway better get on with some real stuff like missing my family and friends and searching for some more whacky links for you. Tally Ho, Toddle Pip, See Ya.

Homesick Now !!

Well been here 2 days now and having lots of fun and being waited on and spoilt and stuff but you know what i'd give it all up for just one kiss from judith. After the dreadfull start to the week as the song says "Things can only get better", and hopefully they will.
I was begining to think that i would be without the Internet all the time being here but i brought my Laptop with me so i could have something to do. I turned it on yesterday and had forgotten that the Wireless Network Card was still in the slot and when it started a box appeared asking me if i wanted to connect to this new network so i thought , thats strange but clicked ok anyway and it connected. So i'm thinking to myself hold on if i've connected to this new network maybe i can connect to the Internet, so i started Internet Explorer and to my excitement it connected straight away so i checked Outlook Express and hey presto that connected as well. So here i was sat on the bed with my Laptop connected to some network or other and the internet all FREE and not sure where it was coming from either. When i checked the connection details of the network card it is connected to a network which has no encryption at all, so some silly bugger around here has got a wireless network arrangement with always on Broadband connection and absolutely no security at all. How can someone be so dumb i ask myself after i've been online a couple of hours surfing and chatting and stuff of course and also how long will this last and i figured if they were so stupid as to set up a wireless network with no security then they won't be clever enough to realise someone else is using there connection FREE OF CHARGE as well. he he he !!! Looks like a whole lot of Downloading is to be done over the next few weeks none of which will be traceable to me anyhow !!!!
So it's not all doom and gloom after all this week, maybe things will brighten up. Anyway gonna speak to judith later thats always good.

I Told You To Watch This Space!!
Well didn't i warn you?? things tend to happen to us in strange ways you know like all that has happened this week so far, very strange realy.
So Wednesday is here and already this week has been written off as another Bad Luck week, But Guess What ??? You'll Love this,, There's a whole heap more problems to deal with yet.
I was sat at the Computer yesterday morning when Tara (My Daughter) came in and says " do my Glands look swollen to you"?. They were up like two balloons on either side of her neck and looked very painfull. So I called the Doctor straight away to get her an appointment imeadiately to see her as due to my Immune System being quite low due to the Leukaemia treatments etc i did not want to put myself at risk of anything serious. So judith took her down the Doctors an hour later and they diagnosed that it is very certainly Mumps!! and prescribed her some Anti-Biotics and told her to come back tommorow to find out for sure if it is Mumps for sure. In the mean time i had contacted My Consultants Registra at the Hospital for some advice on what i should do in the event of it being something contageous etc and he informed me that either of us should be isollated and we should not have any contact until 7-10 days after the symptoms reseed. He explained that they may be able to find me a Bed on the Ward at the Hospital but that they were so busy that i might need to go through Accident & Emergency which could mean a Trolley in a Corridor for a couple of days (No Thanks Been There, Done That and bloody hated it) or i could make my own arrangements i.e stay at friends/relatives etc. So the fairest thing was for me to go and stay with our Brother & Sister in law in Newport some 20 odd miles away till this thing is cleared up and Judith & Tara stay at home. Not ideal but about the only possible sollution realy. So bags packed and goodbye's said off i go to Newport for a Hopefully Short time. Seems realy strange though not being able to see Judith as well as Tara not at all like being in Hospital where at least Judith would come in every day for an hour or so to see me. Now we're just having to resort to MSN Messenger and Web Cams so we don't forget what each other looks like. It'll be strange to get used to a different enviroment again and not having the Planes flying around all day and night. God i miss them already!!!!!

Happy Birthday ???
well the day had come it was finnaly Judiths Birthday. the Big 40 and boy did it go with a Bang or could have at least!!! I'd been up the hospital most of the day as you read and when i got home there was a shocker in store for me. Judith had in fact not decided to stay in bed all day as planned but she'd Started replacing the Floorboards on the landing upstairs. Her Parents had paid a visit earlier and her Father being the way he is ,always knows a better way of doing things and won't take no for an answer had wound Judith up enough that she managed to bang a nail into a Gas Pipe!!! This realy made her day as you can imagine. So she got hold of the insurance company who gave her a phone number to ring for an emergency plumber to come and fix it only to find that there were no plumbers on the list at all. So she contacted Transco who sent a Gas Fitter out to have a look and apparently because the Gas Pipe was the wrong size he wouldn't fix it. She then Called Swalec who we pay our Gas Bill through and they said no problem we will send someone out from Transco to come and repair it for you. A different Gas Fitter from Transco came out, a lovely man and scratched his head a bit and then got on with fixing it. He turned the Gas back on when he had finished and found that there was still a leak somewhere so the cooker and heating were checked no not there, Then he checked the repair again only to find she had gone straight through the pipe ha ha ha. So he turned the gas back off and did another repair on the pipe. He was a lovely guy, realy helpfull and chatty and he got the job done with no hassle so why couldn't the other guy from the same company have done that earlier instead of adding to the stress of the situation, Bloody Jobsworth!!.
So after all this Hassle Judith managed to get a pretty nasty Migrane to top it all off and ended up going to bed at about 8pm poor woman . She won't forget her 40th in a hurry!!!

Is It Me??

Is it me, or is everyone having a bad time of it this week.

Off to my usual Weekly visit to the Haematology Day Unit for Blood Tests and to see the Transplant Team etc which is usually a trouble free, enjoyable, friendly, nice day out all be it there is always a lot of waiting around for results etc.   The Nurses and Doctors are all wonderful there and all of the patients seem to have this affinity together in that they’ve pretty much gone through or are going through or even are going to go through if that makes sense, exactly the same things and treatments etc as each other.  It’s sort of one big happy family and you always have someone to talk to and gossip and find out the latest news and stuff its good.  I arrived as usual a few minutes early for my 11am appointment time and waited whilst chatting to a couple of people for my nurse to call me to have my blood taken.   I felt a bit tired all morning but put it down to the fact I’d been up late on the computer and also was suffering a bit from conjunctivitis which is making my eyes sore a bit.  The time came when Lovely nurse Sally called me to take my blood.  She’s lovely Sally very bubbly and bright just what the Doctor ordered when you’re feeling a bit down or whatever.  I’d asked if I could remain on the bed when she had taken my blood and try and get a bit of sleep for an hour by which time my results should be back.  So I sort of nodded of an on for an hour then I woke to see the Doctor and Sally looking at the Computer Screen opposite the bed where they get the test results off and then looked at me and I saw the Dreaded word Potassium on the Doctors lips… Oh Nooooooooo!!!!!!!!  Potassium means to me Cannulation and a 4-5 Hour Drip so I was not going anywhere for the rest of the day, Great Fun!!!!! I thought to myself this is going to be one of those weeks.  So a Canula was put in to my arm and attached up to the drip and it was fine for a little while then started to really sting which Potassium tends to do. I persevered for a while as it seemed to come and go and Sally had turned the Infusion rate down a touch which helped although that just made it longer.  After about an  hour it really started to sting so we decided that they would have to move the Canula to a different larger vein which they did and it helped enormously so the rate was put back up to warp speed, well snails pace really.  I sort of dosed off and on most of the afternoon which was strange really as Low Potassium makes you quite tired so you would think that having a shot of it would wake you up a bit.   No chance of that with me although I usually do the reverse of everything like the Steroids supposed to give you energy and keep you awake they just tend to make me tired and sleepy…. I woke up at 10 to 5 just as the infusion was finishing and was finally disconnected and released from my containment so to speak.  

Well another day over and can it get any worse? well watch this space because it usually does with me!!!!

What’s that you just hit a nail through a Gas Pipe Oh My God better go see ya!!!!    

Waiting, Waiting, Waiting,

What a bloody day you’d think a simple visit to the hospital would be somewhat stress free, but oh no lets make things as difficult as we can is the order of the day as per usual.

I had an appointment booked to see the Chest Consultant which I hasten to add was made some 6 weeks or so ago.  He was due to be on holidays for a few weeks leading up to this and he particularly wanted to see me in person hence having to wait so long for an appointment.  They also arranged for me to have a lung Function Test prior to seeing the Consultant.  Along with this he told me to have an x-ray before I went in to see him.  My Appointment was booked for the Consultant at 2pm so I figured that if I get to the hospital at about 12.45 there will be plenty of time for me to have my x-rays before I go for my lung function test at 1.30.  12.40 I arrived at the x-ray dept to be faced with a sign saying there may be a delay of up to an hour “Great Start” I thought. So I sat and waited along with only a few people which seemed a bit strange due to the long wait.  Any how I managed to get out of there at 1.50pm which of course made me late for the lung function test Arghhhhhhhh.  When I turned up they made me wait another half an hour before seeing to me.  This was slowly turning into a disaster.  I finally managed to get to the Consultants clinic for about 2.35 in the end only 35 mins late only to be faced with another wait. By now my bum was as flat as a pancake as they don’t believe in comfortable chairs in hospitals.  After about 15 mins or so the nurse came along and put my notes on this small table outside the Doctors room which meant that I was next in line.  I stared at them notes for half an hour until the doctor came out and picked them up and disappeared back into the room with them shutting the door behind him. 15 Mins later he called me in 15 bloody mins, and to top it all after all the fuss about wanting to see me personally The Consultant was still on holidays so I was seeing one of his Registrar’s.  By the seem of it he hadn’t read my notes at all as he knew nothing about my Leukaemia or subsequent transplant or even my Chest problems come to think of it, which I must say really annoys me about some doctors it doesn’t take 5 mins to flick through the notes just to get an overall picture of things you know?  Anyhow after asking me a couple of questions he explained that nothing had changed and I was to stay on the same medication etc as before and come back to see the consultant in about 4 weeks but before I go home could I go back to the Lung Function Dept and have a Blood Gas Test done and bring it back to him to see before I go home.  More bloody waiting!!!!!!!!!   So of I trundled back to another nice cosy waiting room to sit and contemplate the world yet again.  At least it was quick this time only about 15 mins then back to the doctor for his permission to go home, ( like being back in school).  He was with another patient by now so another wait.  I was beginning to think I would never get out of there.  Finally 20 mins later the nurse came out and told me that I could go and I was thinking to myself I don’t want to go now I’m gonna stay here and annoy you all be staging a protest or something then I woke up and got the hell out of there.

What a carry on just to be told, there, there nothings changed just carry on the coughing and wheezing and sucking on the oxygen when it gets too much.  Nice to know we’re in safe friendly hands isn’t it.

Wheelchairs !!!

It’s not till you are having to deal with all the various agencies such as the DHSS, Inland Revenue, Physio’s, Occupational Therapists etc etc, that you find out how much Bureaucracy there is involved in anything to do with Disability Issue’s and I guess most other people having problems too.  An example of this was that due to my rapid loss of weight and muscle and fitness levels being reduced I was in need of a Wheelchair to enable me to be able to get out of the house occasionally even if just for a walk. Or rather a push around the block for a change of scenery.  The process involved firstly getting the Physio to assess that there was a need for it in the first place, then a referral to and Occupational Therapist to come and do pretty much the same thing.  Just this part alone took about 4 weeks.  My details were then passed on to the Department that dealt with Wheelchairs.  They wrote to me after about 2 weeks to let me know that someone will come and measure me up for a chair in 3 months. That day finally came and indeed went by being told that I would have to wait around 6 weeks for the chair to be delivered from a Company that is about 20 miles from us.   Great Service I thought. So it actually took from start to finish about 24 weeks/6 months.  A highly Efficient, Helpful, Stress Free Experience I think not !!!!!.  I actually after going through all this needed to get another lighter wheelchair for getting around upstairs and taking in the car etc which is a whole other story which I might just share with you all one day.  Well that feels a bit better now I’ve had my first little rant and believe me  there will be plenty more where that came from.

What I think that I need to add to this is that most of the people involved in this whole thing were lovely helpful people and that really the problem lies in the Red Tape involved in the whole process.

I hate this part of the blog and to be honest I tend to not even read them when I visit other blogs etc, because I think that you can get a more accurate and often more up to date picture by reading through the Postings, but if you insist on having one here then, here you go….

I am 39 married to a wonderful woman, Judith and have a daughter named Tara. We live in the Vale Of Glamorgan, in South Wales UK. We all lad a pretty much “Normal” life if there is such a thing, till in December 2003, on the 17^th to be precise, I was dealt a blow by being diagnosed with Acute Lymphoblastic Leukaemia (A.L.L) by some numb wit of a Doctor with all the tact of stampeding elephant. He pretty much drew the curtain around the bed as I was in Hospital at the time after having a suspected heart attack, having done blood test, and just came out and said,” You Have Leukaemia”. That’s it no explanation or anything, then just walked off leaving me behind the curtain to deal with it on my own. Well as you can imagine, I was in a bit of a mess to say the least. How long do I have left, why me, I’M GOING TO DIE!!!!!!!!!! Going round and round in my head and no one to talk to about it. He did make another brief appearance later on mind you but that was only to come and tell me that I had to phone Judith my wife and let her know over the phone that I was going to die, charming huh???

Well that was the start of what I see really as my second life as to honest things have changed in so many ways that they hardly relate at all to my life prior to all this. I don’t just mean the physical stuff like all the medical problems its left me with, but also the mental changes such as a bad lack of memory retention, my outlook on life, priorities, tastes etc etc, the list is endless. I actually look in the mirror, although I tend to avoid it a lot and I don’t see the John I know and have memories associated with, it’s a really weird feeling. I thought for a long time that this chance of a “New Start” so to speak could be seen as really good thing, in fact most people would love to be given this chance I guess, but in reality the feelings and thoughts and emotions etc of the old me are what makes me who I am today and to be honest I wouldn’t change a thing. You can’t just pick and choose what parts of the old person you want to keep and which to throw away although I have tried to do just that, but let me assure you that it doesn’t work.

Okay on the health stuff. Apart from the treatments such as the dreaded Chemo and Radiation Therapy and high dose Steroids etc, I have been on a rocky road all through this and sadly a lot of it could have been avoided too. Hers a bit of list although there is bound to be something I miss out but in reading the blog you will pick up on some of them.

• C.O.P.D - caused by a serious chest infection I got from a hospital bug strangely enough whilst in hospital called Pseudomonas. This has left me with severe breathing difficulties resulting in the need for regular oxygen. I am unable to walk more that 1 or 2 metres without having to stop to get my breath which as you can imagine causes a number of problems. Even simple tasks like washing and dressing are a battle and take 10 times longer than normal.
• G.V.H.D (graft versus host disease) - a rejection of my body by the Stem Cells donated by my Little Sister Ruth in October 2004. It has caused me to have a very severe skin problem which is basically, extremely itchy with no way of relieving it either and the main problem is the skin tightness. The easiest way of explaining it is to imagine that your skin is 5 sizes too small for your bones and is stretched taught, or that your skin is severely burnt, well that is pretty much it in a nutshell. This along with the C.O.P.D I mentioned has left me pretty immobile and need to get about in a wheelchair or my newly purchased scooter. I am not able to get upstairs either so am forced to sleep in an armchair in the living room.
• Faulty Heart Valve – forgive me as I never remember the actual diagnosis. My left hand ventricle is only working at around 30% efficiency and my right hand ventricle is working around 60%. Doesn’t cause many problems although along with the 2 other conditions I have mentioned so far it certainly plays its part in slowing me down etc.
• Hearing Loss - My left ear is only hearing 20% and the right ear 70% so I require 2 hearing aids to make up for the loss of hearing. They sort of do the job although my hearing loss does seem to getting a little worse so not sure of the future position.
• Teeth - In the run up to having the Stem Cell Transplant from my Sister, I had to have my teeth checked over for any likely problem areas to be sorted reducing the risk of infections etc. As a result of this they actually had to take out around 13 of the 17 I had left. This was a horrific thing to go through. They took 6 in one go then the other 7 a week or so later. Arggggggg!!!!!! They have been nice to me and given me my own sets of plastic ones though, aren’t they nice???

So as you see life is somewhat difficult as a result of all these things thrust upon me and all in the cause, apart from the hospital bug I suppose, of ridding me of Leukaemia which they have, well, if you count being in Remission since Oct 2004 of ridding me of it??

I have as a result of all this had a lot of time on my hands more so of late. Some would say that this is not a good idea, giving me time to think. I have used this time and intend to go on doing so too, to kick some politician butt. I have become a bit of a one man mission to eradicate the wrongs done to people in general although obviously a lot is to do with being disabled such as access to shops, government buildings etc etc I am quite vocal on issues such as the Crap Patientline TV/Phone scam run in hospitals and the outrageous Prescription charges Cancer Patients are forced to pay along with the thousands of pounds on other stuff too such as transportation etc etc.

Well I think this has gone on long enough now. If you want the real, up to date story just read through the last few blogs and I’m sure you’ll pick it up. Please feel free to contribute via the comments on each post or emailing me via the links. I welcome any contributions you might have to whatever it is and it is just nice sometimes to hear that people are actually reading my rants.

See Ya!!