Sadly I didn’t manage to get to the Relaxation class this morning as when I woke up I felt dreadful actually. Extremely nauseas and even after taking the anti sickness pills I didn’t feel much better so decided not to risk making a mess of the car on the way and instead put my feet up and chill out for the day.

The last few day I have been watching a few programmes, well not quite programmes as such, more like advertisements on one of the many hundreds of shopping channels. Now I know before you all start on about how sad I must be watching such drivel, I strongly believe that these types of programme are great if you want a bit of cheering up as most if not all of them are so unbelievable and the presenters are so committed to them it is hysterical. More specifically I have been watching programmes selling learn at home study courses in things like “Making your first Million pound”, or “The secrets of psychology”, you know the type of thing, all aimed at getting rich quick. There was this rather interesting sales pitch from I think his name was Bill Procter who was trying to sell you one of his programmes on some way or other to make money and he kept repeating this same thing over and over again about the fact that we all make choices in life which as a consequence of this decision the path we then follow is determined. Well this is not that strange an observation until you get into it as deep and as literal as he was saying. Even things like we choose each week, if we are lucky to be in employment that is, to accept our pay packet as being enough. We choose to pay the prices supermarkets ask for their goods. I know this may not be so thought provoking in itself as our answer would be, if we didn’t like it we would shop elsewhere. Okay think about this, what if we wanted to buy something from shop A but pay the lesser price that shop B is charging, how could we do it and in fact even why would we want to do it? Well, why is pretty obvious isn’t it, but how somehow appear completely alien to us.

Do you know that feeling, when you wish you had written down what you were thinking at the time as you will never remember it later, well I am feeling that now. When I started out on this posting I knew exactly what I was going to say and it all made sense, but now I come to write it I cant blinking remember what I was thinking and as a result I have my first experience of writers block I guess. Ah well shame not to post it as I’ve spent a while on writing it and besides I could always update it at a future time when I remember, if I remember.

The one point I will make, that I can remember is that I did not part with any of my hard earned cash on any of these courses, instead I did a bit of searching and managed to find most of it Online and FREE!!!! I do love a good bargain!!

See Ya!!

I don’t know about you but I have been keeping an eye on the unravelling news story regarding Adoption, more so the Catholics approach to it. Is it just me that finds their trying to gain exemption from allowing Gay couples/singles to adopt children completely Discriminate? It would be all the same if they decided to not allow Disabled People for example, there would be widespread condemnation. What gives them the right to even attempt to try and do this? What makes me laugh more than the story itself is the fact that the government has decided to wimp out and actually give them 21 months immunity to so called “Adapt to the situation”, YOU WHAT!!!! That’s like saying, you are allowed to discriminate for now and we will turn a blind eye to it and more probably in 20 months when the story is “Old News”, they will just continue on as they have been for the 21 months. Surely what the Catholic Church are attempting to do is wrong isn’t it in the day and age?? I mean 21 months for what?? It’s not as if they have to make any major changes to their structure or staffing or anything other than their Prehistoric Views. I think the line has to be drawn somewhere otherwise we are getting into the realms of completely over the top political correctness but where they are trying to draw it is no where near the mark. Why doesn’t the government have the guts to stand up for what is right? What is quite frightening is that the outcome of this situation has somewhat set a precedence so that maybe some other group etc decides that they don’t want to offer there service etc to Disabled people or single parents etc etc. A huge backwards step undoing all the progress made over the last few years.

Ah well that’s that rant over with, for now anyway. I’ve been out into Cardiff for a bit of retail therapy today. I had a couple of vouchers for Christmas that I thought I would try and make use of whilst the sales are still on. Well, more kitchen gadgets to fill the already bulging cupboards with. I do need them all though, although I think Judith and Tara would tell you different. I love the indoor market in Cardiff, and always try and go there for my favourite marinated meats etc they are absolutely gorgeous. I bought an Oxtail while I was there too so hopefully I will make a nice stem in the next couple of days. I’ve never actually cooked an Oxtail before so that will be a first. I must say too that we met two wonderful Traffic Wardens who were extremely helpful and even allowed us to park on double yellow lines right in the middle of the town centre as long as we were back within 2 hours, which was great. See they can be nice and they’re not all like the mini Hitler’s I had to deal with all those times I used to deliver around there.

I’ve been having major c—p with my eyes recently. I think one of the medications I am taking has been causing Dry Eyes. I have been using this false tears stuff which up till recently has been working fine providing I put it in fairly regularly however this last few days it hasn’t been doing anything at all. They are really quite sore at times and find that about the only way to get some sort of relief is close my eyes which is not a good idea whilst I’m driving though!! My chest though thankfully is currently behaving itself although I am still wheezy during the day now and then. I’m off to George Thomas Hospice tomorrow for my first Relaxation class which I’m looking forward to. I’m hoping that it will teach me how to relax better at home and maybe get a better sleep.

Right I’m off to see what else the government are wimping out of!!

See Ya!!

I have just been catching up on fellow Blogger Peter as he has been hiding away in Southampton Hospital for about 10 days or so. He’d managed to get himself in a rather dehydrated state and as his counts were so low was a bit of a sitting duck for any nasties floating around the place. After he had been released he attended Guys for his usual chat and treatments etc only to be told, I guess probably the one thing that everyone facing such an illness / disease dreads deep down. They have decided that in their opinion any further treatments would be futile and of no use and that all they can offer from now is palliative care. He and his family must obviously be devastated, I know I would be, and they will of course need to summon up any little glimmer of strength to fight this thing. It does go to show how fragile our existence on this planet is. My heartfelt thoughts go out to them all. Peter has been an inspiration to me for some time now and I have considered myself lucky to know such a wonderful man. His courage knows no end and I know that he will endeavour to fight to the very end as he always says, ”Onwards & Upwards”

I guess it’s at times like this that I reflect on the journey I have made so far in my short life. Not just the last few years since the diagnosis but from birth or more likely from my teens as I’m not sure about you but I don’t remember a whole lot of detail about things like my 1st birthday party etc etc. I suppose I could explain the path I have taken as windy and rocky, probably no more so than the next person, well maybe not????? At the end of the day it is all of these life experiences that go to make up the person you are today. I tend to try and search deep down inside myself for all the strength to continue on with the fight. A little self analysis can be good for you I find although a lot may well not be, especially with some of the stuff flying around in my head at times which is not safe for public release.

If you’ve a spare minute please pop onto his blog and send him your thoughts and support as I am sure it will be appreciated.

See Ya!!

“ Hey, do you want to buy a bike”? Have you seen the news coverage from Devon where the cargo ship has come aground? It’s like watching a load of vultures picking over a corpse. There’s all sorts being taken away from the beaches after being washed ashore including 20 BMW motorbikes, Empty Oak Barrels and Hundreds of packs of Nappies. The law as far as I believe is pretty grey in this area and besides how are they going to go about identifying people who have taken these things, apart from the owners of the Motorbikes I guess who will have to register them with the chassis numbers I suppose which will be traceable. The sad thing about this though is that where some of these people are forcing open some of the containers washed ashore only to find the goods inside are useless to anyone they are then leaving them open so that when the tide comes in the stuff inside them is being washed back out to sea causing more needless pollution to add to the oil and diesel etc already causing serious damage.

I’ve had a completely chill out day today, in fact I didn’t even wake up till about 3pm, I know I’m a lazy sod, but I didn’t get to sleep till about 6 o’clock this morning though so I do have an excuse. It was not through the want of trying as I was really tired from around 10pm but for one reason or another my brain wouldn’t go into Hibernate mode so that I could get some sleep. I can’t even blame it on my chest this time although it was playing up all day as usual but by the evening had settled down a lot. A few times during the night it started to get a little wheezy but nothing too much and in normal circumstances I probably would have slept through it.

It a bit of a relief to have the Pic-line out at last as it was starting to hurt a little. It has in fact left me with this little patch on my arm that is quite sore to touch and bright red. It is easing though as time goes on so I am not too worried about it. The Pic-lines are a wonderful thing although they have a tendency to be annoying and uncomfortable at times mainly due to where they have be placed, right in the crook of your elbow, so that each time you bend your arm it can cause problems like getting stuck and pulling out etc as well as the fact that I, like most people sweat in that area and it ends up making a right mess under the dressing before finally causing the dressing to come off all together.

I’m off for some Reflexology tomorrow which I always enjoy. I still find it quite fascinating that manipulating some ones feet can be good for all sorts of things. I do find it extremely relaxing too and always come away feeling like I could just sleep for a week. I guess some of it could be down to the fact that your feet are probably the most over worked part of your anatomy on the other hand they are also the most ignored part when it comes to pampering which doesn’t make sense really.


See Ya!!

Well the Military have finally decided where the new Tri-Service training Academy will be built and its coming here to St Athan where I live in the 3rd pothole from the left 50 metres up the runway. As per usual the English were straight on their soap boxes screaming foul play as they always do if Wales ever win any big contracts instead of them. It will obviously mean a lot of inconveniences during the building work as well as afterwards when they are expecting around 10,000 personnel to be on site. They are expecting around 5,000 jobs and also putting £16 Billion into the local community which seeing as the Vale Council are so much in the Do Do at the moment will no doubt come as a blessing. The overwhelming deciding factor in the Metrix, St Athan bid was the fact that it would all be done on one site therefore cutting down costs overall. I don’t believe that there is nowhere in England where this could be done also yet none of the bids submitted took this into account. It has a long way to go and in fact they are not expecting it to be fully functional till around 2017 so I will just have to wait for my slap up meal in the restraints their planning or watching a movie in the cinema or even, heaven forbid, have a jog around the Olympic size track or a swim in the pool either, all of which are planned to be built as part of the Academy and it appears that these things will be “outside the wire” as they call it which means accessible to non-service personnel.

Okay then on to more gory stuff. For some blinking reason this last, well about 5 days or so, I just haven’t felt myself. Now I know you can apparently go blind from doing things like that but still… Seriously, it’s been quite strange. I have lost and regained then lost again my appetite, I don’t seem to have a great deal of energy and in spite of this though I haven’t been sleeping too well. My chest has been playing me up a little too. Quite wheezy at times and I had this annoying tickly cough which I just couldn’t get rid of. In fact it has nearly made my sick through coughing so much at times. I have felt really warm although my temp has not gone over 37 degrees and my poor old thermometer has had a right bashing as I have been checking it every other hour or so. Do you know that feeling when you just can’t be bothered to do anything at all, well it’s like that at the moment. So much so, that I would just sit here and be spoon fed and get whoever had drawn the short straw probably Judith to lift the drink to my lips too as even that is an effort at the moment. I’m hoping that the dose of “The Good Stuff” Immunoglobulins, I’m getting this afternoon will make a bit of a difference, it does sometimes.

I managed to get for a little while yesterday. Jude took me into Llantwit Major just for a few odds and ends. We saw lots of odds but no ends though!!!! I had my first attempted freefall out of the Scooter whilst we were there. I was trying to get from the road onto the pavement at a section where there were these sloping bricks. Well silly bugger went up side ways sort of instead of straight and as a result started to tip and make a b-line for freedom out of the side of the Scooter. Luckily Judith was walking right alongside me otherwise it would not have been a pretty sight indeed. She managed to stop me mid flight so to speak thankfully. I took every little bump with caution from then on I can assure you.

Okay then I had better make a run for it as I have to go and have my “Good Stuff” at Heath Towers. Should be fun, will take around 3 hours sat there on a drip then they have to take out my Pic-Line too which should be quick though.

See Ya!!

Well after a few quiet days of doing nothing much at all, apart from waiting to see if this recent spell of generally feeling unwell, or at least not quite right, I was quite amused by a reply to a blog entry I did way back in March 2006. Although factually completely inaccurate it brought a smile to my face anyhow. It goes to prove that whoever it was that wrote it had not even spent the time to read other entries to get the full picture and besides that they didn’t have the decency to put their name to this glorious piece of trash and signed in as anonymous. You can read it HERE!! And make up your own mind.

Ah well lets get back to reality. After a visit to see Merlin things are still going ahead in the Light Treatment front. He has been asked to put forward a business plan now to weigh up the costs of them purchasing their own machine and also one for sending me to Birmingham. I know it’s not starting right now but I have to look at it that it is at least moving in the right direction. The physio has sadly come to a stop now too as it is only meant to be provided for 6 weeks and I did manage to get 8 out of them I didn’t do badly. It’s down to me now to try and continue to complete the exercises regularly to keep the momentum going. A lot is also down to the weather as I have said before as I am unable to get out for a try at walking unless it’s at least dry and not too cold.

This strange feeling I have been having these last few days is a little annoying. I have almost completely gone off my food and am feeling quite tired a lot of the time although some may be due to the lack of food I guess. My chest hasn’t been wheezy as such just a lot tighter making breathing a little harder. I have also found that even doing something like dressing which I was managing without too much breathlessness recently I have really struggled with this last few days as it has made me so short of breath. There didn’t appear to be anything in the blood results on Tuesday so that jus adds to the mystery. My temperature which is a sure fire way of pre warning of any impending nasties invading has been a steady 36.8 perfectly normal. I’ll just have to get out my inhalers and try and make a difference and maybe take a multi vitamin tablet and possibly some potassium too as that seems to go down easy with me when I am not eating anyhow and low levels do make me tired a lot.

I’m hoping to be a little better next week as I want to try and get out a bit more, well I have to at least 3 days I think it is for various hospital stuff but I want to go spending some cash in Cardiff, Oooooopsss I know I should be feeding my family first, I am a naughty boy!!!!! Hell I don’t care I want to finish off the rest of my redundancy pay from November 2006 when I was made redundant. T-Bone Steaks all round then!!!! Maybe a Pheasant or 2 or some Foie Gras or some Kobe Beef!!

See Ya!!

“Rain, Rain, Go Away, Come Back Another Day”, or more like “Don’t Come Back Another day”. I hate this damp, cold, miserable weather as it always ends up in making my chest and breathing a whole lot worse. They do say that the moistness in the air should make things a little better in the breathing department but for me it is completely the opposite. The first sign of rain drops and I’m running for the nebuliser and any other puffers I can get my hands on to try and allow me to breathe. Its at times like this that I can really do with just jetting off somewhere nice and sunny till the good weather, that’s a laugh, returns. Just the slightest movement leaves me gasping for oxygen, even silly little things like standing up for more than about 5 seconds can turn me into this quivering mess struggling to breathe. In thinking though I have been out of Heath Towers for well over 2 months now, which at this time of year is good going for me. In previous years I would not have been able to stay away for this length of time, as I would have got one infection or another that needed to be treated there, so maybe something is working, such as the Heamaglobulins??

Not a lot has happened since the last posting, pretty much as a result of what I’ve been saying, the weather and I’ve not had to go to the hospital much either. Next week it’s more like back to normal with a couple of visits to Heath Towers firstly to see Merlin on Tuesday. I am hoping he will have some more information for me about starting this Extracorporeal Photochemotherapy treatment. I’m not quite due for my next dose of heamaglobulins, I think they are due in a couple of weeks, but I will also have the usual blood letting session and the endless wait for drugs. I am also going to ask if the Pic line can be taken out as it has blocked up completely now and wont take a flush either. On top of this it has been a little sore occasionally as my skin is quite sensitive there and when I sweat it just seems to make the whole area a bit of a mess too. I don’t really need one in right at the moment however I will need to have either a Pic line or a Hickman line in when I start this treatment I would think. Well if they take this one out now at least my arm will have a chance to recover before they have to put the next one in. It’s also one less chance of getting an infection which is a bonus I suppose. It looks also likely that this next week will be the last time I have the Physio at home. The scheme is only designed to be given for 6 weeks in all, well I have actually had 8 weeks which is more than they usually do. It is a shame as I really did benefit from their attention and sadly there is no alternative service available to carry on their good work. It’s down to me now I guess to try and continue to do the exercises that we have been doing and then also trying to get out for a walk more often, with Judith obviously chasing me with the wheelchair, as this is where I was making good steps, so to speak, towards getting a little fitter. Again though the weather has a key role to play in all this too as if it’s cold and damp or wet then there is no chance of me doing any walking outside.

The concentration is still a bit of a problem too at the moment. I guess this has been an on going issue all through this. Sometimes it’s better than others. I think it is a lot down to various medications or combination of medications. It can be really annoying as well as frustrating.. I find at times I can sit here watching the same old programme say 3 or 4 times in a day and still think that it is the first time I have watched it. Also at the end of it I couldn’t tell you what it was about, which is quite scary. It can be like one long day dream sometimes lasting days or weeks even. There is no real pattern to it either which is the frustrating part as when I do have times that my concentration levels are more normal I haven’t done anything different at all.

All this and I haven’t even got on to my skin yet. Well there’s no blinking change there too sadly. Hopefully this treatment will start sooner rather than later and at least then I can start to gain some benefit from it because at this rate it just seems to be getting worse and worse each year and I guess you can only become so tight before things start to rip and tear which doesn’t bear thinking about.

So its fingers crossed and anything else I guess, for some progress soon.

Also as a lot of you will know and have already visited his blog, Peter, a fellow Blogger and patient or should I say fighter, like myself, is having to go through another course of the nasty Chemo again at the moment to try and kick the lymphoma into submission. I’m sure he would appreciate your thoughts and prayers, if that’s your thing, and maybe a comment or two of encouragement to see him through this testing time. You can either get to it via the link to Peters Hospital Diary on the right hand side of here or click HERE to be magically transport through the galaxy, or is it the dairy milk straight to his blog.

See Ya!!

“Well”, I hear you ask, “What does a Grumpy old Invalid like you do this time of year when the medical profession seems to grind to a halt?” I guess in a nutshell the same as I always do, absolutely nothing. It’s the same every year all non essential departments such as out-patients etc just close till after the new year, well apart from the Dermatology Out-patient clinic which decided in their wisdom to give an appointment for 29th last Friday. Don’t these people have family to visit or what?? I suppose it was a welcome excuse to get out of the house though. They didn’t actually do anything and I think if Judith hadn’t wanted the registrar to see one of the sores I have on my lower abdomen, that sounds a bit posh and technical for me I know, what I meant is my big fat belly, then I don’t think she would have even wanted to have a look at my skin, which is a little surprising as that is the main reason for seeing the dermatologist. I’ve got this one little, what used to be a skin tag right on the waist line of my trousers. It has swollen up loads of times and actually burst leaving a nasty looking sore. It tends to scab up but because of the location it keeps getting caught and this reopens the sore again. Only solution from her was to stop putting on Inadine under the dressing and just put a dry dressing on for a while. Oh yes, “And come back in 6-8 weeks”, for some more useless information, Yeah Right !!! I think I might give that one a miss!! Hopefully I will be going back and fore Birmingham for the treatments by then so I will not be available.

Answer me this…… Why is it that the week in between Christmas Day and New Years Eve nothing ever seems to happen? It’s like a week of nothingness. I suppose if your into the rough and tumble of the yearly sport of Bargain Shopping at The Sales then this is a time to enjoy but if like me you just want to pop into Tesco’s for a couple of essentials why do I have to fight my way through these hordes of people blinkered to all else apart from shops shops shops, spend spend spend… it took us nearly 45 minutes to get from the main road into the car park at Tesco’s a distance of say about 500 metres, so as you can imagine by the time I got in there I was not in the best of moods. Thankfully the store was pretty quiet as everyone seemed to be heading for the other outlets in the park for their fix. Here’s the other annoying thing, “How come even a small shop for a few odds and ends of essential items it still comes to £80 odd”???? It wasn’t that long ago that £80 would have fed us for a month. I was given a voucher from my Big Bruva for my favourite Kitchen shop in Cardiff town centre for Christmas so I will have to make the brave step into the metropolis whilst the sale is still on so I can grab my own bargain. Sadly I think it must be the only shop that doesn’t have an online presence too so I can’t cheat there. I think maybe an early morning dash in may be appropriate that way I may be able to pop in the market when I’m there to get some nice fresh fish or meat etc..

Chest wise, as in breathing sensibly has, I must admit, probably been the worst it’s been in a long LONG time. It seems like my chest has been permanently wheezy for well over a week now, thus making breathing quite difficult at times. My nebuliser’s have all been out along with puffers and even the odd whiff of oxygen too for good measure. All to no avail really and rarely giving any relief. The weather as usual is by far the main culprit in causing this as it has been very misty and really cold and the odd spell of rain too, all things that never fail to start my chest off, all in one go too. I am finding the slightest exertion is almost rendering me incapable of sustaining life as we know it, which is somewhat worrying at times, more so for the onlookers a lot of the time. I think it might be the nice shade of blue my face radiates that causes that. The physio is still happening to a fashion at least. Obviously due to the holiday season being upon us there is a limited service available so far example I only had 2 visits last week and I will only be getting 2 visits next week also. Sadly the other reason for the reduction to just 2 days is that the care/physio being provided is coming to an end probably next week. It is only designed to run for 6 weeks and as funding is tight and the uptake of the service is overwhelming there is not much chance of extending this period. I have at least I guess now got the exercises to practise on my own which I have been doing all along anyway but it’s the walking I will miss the most I think. I know Judith could and probably will do the same thing as in follow me with a wheelchair when I go for a walk it is still different than the physio being there as I tend to push myself a little harder when they are around. I am going to have to really make an effort to go out as often as possible for a little stroll otherwise I can see me declining physically very quickly and probably ending back in Heath Towers which I think I could do without. “Did you hear that”??? I swear I heard an almighty gasp from all the nurses reading this. “What, don’t you want me to pay you a visit then”??? Spoil sports!!!

Okay then I am off now as I need to start to get dressed as we are going out for Sunday Lunch for a change ha ha ha, it’ll probably take me an hour or so to just put on a pair of trousers, shirt, socks (with my clever sock puller upper) and shoes with my trusty Long Shoehorn. See you all next year.

See Ya!!

Well, after all the hype, that’s it for another year then. I mean “The Big C” and not Cancer either!!! You know, the day when the strange man in a red outfit and a white beard flies ably assisted by a group of reindeer around the world bringing billions of pounds of, to be honest, un needed presents to one and all. I often think, what would happen if say everyone in the world for just one year didn’t spend their money on all this stuff. But donated the equivalent to last years spend into a large pot to be distributed equally to all countries around the world. I suppose I wouldn’t put “Fairpak” in control of distribution mind you. I feel sorry for all those that were stitched up by them as we for many a year used them when times were a lot harder to save up towards the extortionate expense at this time of the year. It will hit hard yet again at the most venerable and needy people in society. I would think the outcome of this non present buying experiment would quite probably wipe out world poverty and debt payments. It must run into billions world wide??? I, sadly, although some may disagree, live in “The Real World”, well “My Real World” anyhow, and know this will never happen and also that even if I made a token gesture of donating my money next year, it wouldn’t make much of an impact at all. What difference would £2.68 make really to tackling world poverty??

Right then the day itself….

Well after what probably turned out to be around 10 hours of food prep and cooking, 5 of which was just for the 5 bird roast which simply refused to cook through any quicker, bloody stubborn bugger!! I was what would medically be described as “Absolutely Bloody Knackered” or words to that effect anyhow. I still find it amazing how cooking can be so tiring. I accept the walking back and fore to the kitchen would play a part in this but even when I’m just sat there doing whatever I get really worn out quickly. As per usual over indulgence was the order of the day, well it is only one day of the year after all, well one day that I have a good excuse to over indulge anyway. I blame a lot of it on the new plates we bought just in time as they are smaller than the older ones and therefore it looks like there is more on the plate than before. The highlight of the lunch was sitting down afterwards, pleasantly stuffed and trying to do my impression of a heavily pregnant woman, with huge success too. Then there’s the standing to attention whilst the dear old monarch of the land bestows her thoughts on us mere mortals although I must apologise to Her Maj as I only managed to stand for about 20 seconds. I don’t think she spotted me though as my slender figure was obscured by a strategically placed Microphone Stand!! I did however find her speech a little confusing as I couldn’t, and still don’t quite see what the massage actually is?? I will have to listen to it again I guess a few more times to understand it.

Then it was off to Mummy Dearest’ to inflict myself of them for the rest of the day. All the rest of the family were gathered up there for lunch and lets just say by the time I got there copious amounts of fire water had been consumed. I think you would have all been proud of my Oscar Winning performance trying to get from the car up the steps and into the house. My brother ably assisted by acting a sort of human walking stick to lean on, on the treacherous journey. Well after what seemed like ages and ages although it was more likely to be around 10 footsteps I had to stop and sit down and subsequently set about scaring the hell out of the crowd that had gathered now to witness this “Great Event”. I was, to put it mildly, struggling for breathe and quite probably on the verge of turning blue, or at least an interesting shade of purple anyhow, and still had the steps to conquer. I don’t know who looked so worried out of them all. I did take it really easy too, I don’t know what I would have been like if I really pushed it?? well after taking on the steps a few at the time, a bit like making it to base camp ,then camp 1, camp 2 etc I finally made it to the safety of the nearest armchair and quite simply collapsed into it in a sort of blubbering heap of breathlessness. After the obligatory wait of about 2 or 3 minutes or so I was able to finally make some sort of verbal interaction with every, much to their pleasure, although I suppose later on they were beginning to wish to return to that state!!! And the look of relief on their faces said it all as I don’t think they fancied having to give me the kiss of life at all!! It was nice to meet up with them all at the same time and have a good old natter although I would have been the icing on the cake if Judith & Tara and Daniel and Emily ( Adrian, my brother’) children, had managed to come too. Never mind there’s always next year. Dad was in his element and trying, mostly successfully to wind Ruth up. She, even after all these years still bites, it’s quite funny!!! I did another of my party tricks too, spilling coffee all over the floor and not just once either I went back later for a repeat performance. I must add though that I was ably assisted by my Dad the first time although the second performance was all my own work, and not a drop of alcohol had passed my lips too which is good going for me. Well eventually after being fed and watered it was time for the repeat showing of “Walking Like The Living Dead”, the journey back to the chariot. Surprisingly Adrian stepped up to help again, I thought I had scared him enough the first time round. Dad lit the way with a torch that was throwing out a beam of light stronger than the Spotlights in Colditz. I didn’t quite get into the same state on the return trip as I find it a lot easier to walk down stairs than up them although I did manage to stop a few times and was in a bit of a state when I made it to the car, but thankfully that eased after a while when I warmed up a bit and got some oxygen in my lungs. I sand along to “Coronal Bogey” and other great military marches all the way home on full blast, much to the amusement of people that I pulled up next to at traffic lights etc ha ha ha!! Ahhhh the comfort of the old trusty armchair again and the warm welcome from the Harvey’s Bristol Cream was nice too, and the house to myself as the others were out. After ringing Mother to let her know I had managed to get home unscathed I settled into some catching up, well everyone else had been at it since early this morning and it was now 10pm and not a drop had passed my lips Honest Occifer!!! Hick Hick!!

Well as you can see by the time that I posted this I haven’t managed much sleep again. I had probably about 1 and a half hours then up, wide awake as usual. Ah well I’ll have to try again later to have a little snooze, meanwhile a little Pre-Sale surfing wouldn’t go a miss. Well I wouldn’t want to miss out on all the bargains would I??

Merry Whatsit to one and all!!

See Ya!!

All in all a good week was had by all, well me anyway, not too sure about everyone else really but it sounded like a good, happy, positive way to start off the blog for a change.

Okay first things first, as I was finishing the last blog you might remember me saying that I was off to a local pub for Sunday lunch. Well I have to say it was probably the best lunch out I have ever had. It was perfect in every department from the Roast Spuds cooked in Goose Fat and the Centimetre thick slices of Roast Beef and the vegetables, well, I have never in my life seen so many vegetables served up. Most I find usually dish out 2 maybe 3 different types but this pub served up no less than 6 which were Whole baby carrots, minted garden peas, mashed Swede, minted new potatoes, sprouts and cauliflower topped with a cheese sauce. In fact I also forgot to say on the plate along with the meat and roasties were some roast parsnips and a homemade Yorkshire pudding. And then the icing on the cake was the homemade gravy made with the roast meat juices. I must admit I was in heaven as I do love my Veg, in fact I ended up leaving a lot of meat and set about devouring the Veg on offer. So if you happen to be in St Athan at anytime and fancy an excellent Sunday Lunch then I would highly recommend:

The Four Bells Inn
Rock Road
St. Athan
Vale of Glamorgan
CF62 4PG
01446750383

But make sure you book a couple of weeks in advance as space is limited along with the rush of people who like me who appreciate good home cooked food.

Okay then on with the rest of the weeks highlights.

After a well deserved snooze on Sunday to try and recover from lunch I pretty much just chilled out in front of the goggle box watching re runs of all my favourite cookery programmes mainly. I did a bit of surfing but to be honest I don’t seem to have the patience at the moment and as result I am not spending a great deal of time on the computer at all. I’ve done the odd bit of Christmas shopping including the star of the Christmas lunch this year, a 5 Bird Roast which includes a partridge inside a duck, inside a goose, inside a chicken, inside a turkey. It looks heavenly tasty and I just want to get on with tasting it so there may be a chance that we wont wait for Christmas day to come and we will have the days feast before next Monday. There is only one slight problem with this roast and that is that it actually weighs around 11 pounds and that’s all meat as it is completely de boned and there are only 3 of us for lunch this year and in real terms as I cant eat too much because of the whole skin thing and Judith doesn’t eat a lot that probably equates to about 2 meals between the 3 of us. Thankfully I have managed to cut it in half and freeze them so we can enjoy the other half later on. I have promised my mum that I will take some up there when I visit over the holiday although I don’t think she is expecting quite a fridge full.

Wow this is turning into another foody type blog again isn’t it?

Okay Monday, what happened on Monday???? Oh yes I went up to Heath Towers to see Merlin. After the usual leeching of my valuable red stuff it was a case of settling down with some gorgeous sweet pumpkin and parsnip soup and garlic bread and wait to be summoned into his lordships lair. Ooops more food again sorry!!! Well after the customary 3 hour wait he finally saw me. He gave me an update on the new machine thingy for the GVHD and thankfully it was quite good news. They have at last decided to offer me this treatment as up till now they were still umming and arring and they are planning to purchase the machine in question for themselves. However, the down side is that they will not be able to do that till the start of the next financial year, April, meaning more waiting. Well no actually!! They have also decide to try and arrange for me to go to Birmingham, the nearest machine to here, to start my treatment as soon as possible after Christmas and then when they get their own machine here I will just transfer back to here to complete the treatment. So good news at last and I will say that it was quite a shock as I wasn’t expecting anything to happen till after Christmas as he had said the last time I saw him.

Tuesday I had an appointment with the Reflexologist. I really get a lot out of these sessions in many ways such as relaxing both the mind and body and making me actually feel generally happier and content. I have a number of sessions booked with her at the moment and will hopefully continue to have more in the future although, as the service is provided by a local Cancer Charity “The George Thomas Trust” they are totally reliant on donations and fundraising to continue with there valuable services.

Wednesday was yet another trip to Heath Towers, this time it was for a 4 hour infusion of Immunoglobulins. This time I was bit better prepared and took my laptop in with me to catch up with, yep you guessed it, more cookery programmes that I had recorded over the last few weeks and not yet had chance to see. It all went quite smooth actually apart from the last bottle playing up a bit by refusing to go in properly unlike the first 2 that went through with no problems. Just my bodies way of keeping them on their toes I suppose!! I also had a visit from the sweat busters (Physiotherapists) to bring me my new 3 wheel push along trolley to replace using the 2 sticks when I do manage to walk a little. It has even got a little shopping basket on the front to put all my bits in!! she was really apologetic as it had been some time in coming although she did explain it was down to the person in the appliance stores and not actually them which is about right as I can remember the hassle I had to get the wheelchair last year.

The physio’s are still coming here to see me each day and this week it has been dry enough for me to get out for a little walk each time along with the usual exercises. I have actually managed to walk to the car twice this week admittedly I was still quite out of breath when I got there but soon recovered and went on to walk some more so there is definitely a lot of progress in that department which is promising. Don’t get me wrong I will not be signing up for any marathons in a hurry unless of course I can do it in my Scooter!! But to be honest I am grateful for any progress right now more so this time of year as I usually tend to get a lot worse when it is cold and damp etc and then a little better in the warmer months if we actually get any that is.

Health wise all is around the same with the skin GVHD and shows no sign of improvement or worsening for that matter, so I guess its just a case of waiting for this new treatment to start. My chest however has been up and down this week. I have been wheezy quite a lot and it seems to be for quite long periods too instead of the usual couple of hours. I did feel a lot better later in the week although this weekend my chest is quite bad and causing me sleepless nights again along with this annoying permanent rattle in my throat. I’m not sure whether the Immunoglobulins have the same sort of effect as say having blood does. What I mean for all those reading this that are or have not needed regular blood transfusions is that the usual effect for most people after having some blood is a bit like a rush of energy and life again. Not unlike the effects of Red Bull, it certainly “Gives You Wings”. I definitely feel a little better since having it on Wednesday and hopefully it will have the effect of keeping me out of Heath Towers over the festive season however much I really will miss the gorgeous Lunch they provide??????

Well I guess all in all that is the sum of my week unless you want to hear about all the hundreds of deliveries turning up all week as all 3 of us have been ordering pressies online. I thought not. Ah well as I have been typing this thing for the last hour or two I guess it’s time for a rest son I’m off to get ready to go out for lunch again, although sadly not at the Four Bells but to an equally delicious establishment called The Highwayman, perched right on the end of the runway to Cardiff Wales Airport, so the mix of food and aviation fuel fumes is something to savour let me tell you!!

See Ya!!

Sorry Sorry Sorry!!

Sorry sorry sorry!!!  I know I haven’t been around for a while and to be honest I don’t have much of an excuse at all.  It’s just that in general I just haven’t felt up to it for one reason or another.  I have been feeling realty tired of late and not having much energy and least of all concentration.  There’s no real reason for this that I know of unless they find any thing to the contrary in my bloods when I go up to see Merlin tomorrow, it’s just how I seem to be every now and then.

Well not a lot has been happening for the last week or so.  My chest has been causing me some problems though.  The damp weather and the change in temperature from warm to cold really makes my chest very wheezy and therefore makes it pretty damn hard to breathe which you can imagine can cause a slight problem.  It is quite hard to not let it completely rule my life as in making me stay indoors all the time because you know when you go out you are going to probably suffer somewhat but as you all know b now I am a bit more stubborn than that.  I have tried things like wrapping a scarf around my face, you know like a Ninja Fighter, which although makes me look very menacing and frightens all the kids also makes breathing  very difficult which is not a good idea.  I’ve tried oxygen too which strangely makes no difference at all.  Maybe I ought to do as many a pensioner has done for years and jet off to spend the winter in Spain in the warm.  The only problem is that it will cost me a fortune in air fares coming back and fore to see the Wizard, maybe though thinking about it he could always cast some spell and get his but out there couldn’t he?

The GVHD of the skin is still pretty bad and shows no sign of burning itself out.  It is extremely tight and painful at times rendering me chair bound which I blinking hate.  I was only thinking the other day after being asked by someone to try and describe a normal day’s routine  if I don’t have any appointments or are not going out for any other reason then the only time I actually move from the chair is to go to the toilet say about 5 times a day taking about an hour or so and also 1 or 2 trips out to the kitchen to cook whatever which can I guess take up to about say 2 hours in all.  Therefore I am spending on average a shocking 21 hours sat on my bum in the chair.  That’s quite frightening when you look at it like that.  I do try to complete a lot of the exercises whilst sat in the chair which has helped somewhat and as I suffer at times from circulation problems in my feet which is no surprise sitting on my bum for so long these exercises seem to help to bring some blood back into my lower regions.  I’ve thankfully now also got a proper pressure relieving cushion to stop the old sores on the bum thank god although I find it very difficult to sleep whilst sat on it.  The physio is carrying on and still proving to be very helpful.  They come on a daily basis for an hour a day.  The routine is usually a good old natter first, well you have to have your priorities right, and then we get on with the job in hand which involves a series of leg exercises that can all be done whilst sat in a chair.  The purpose I guess is to stretch the skin a little as well as to strengthen the muscles.  They are very simple to do although saying that, they still cause me to be out of breath at times which always amuses me, when I’ve got my breath back that is!!!  Then if the weather is not too bad we try and go out for a little walk outside.  Whoever is with me walks behind with the wheelchair for me to sit when needed.  As I think I have said in a previous blog one of my goals to work on with the physio was to be able to walk to my car without being a physical wreck.  So each time we do manage to get out for a walk we head in that t direction and thankfully each time I have gone I have managed to walk just that little bit further so much so that I actually managed on Thursday to walk to the car.  Although I was out of breath I was still not that bad and even managed to get up and walk about the same distance again which is very promising indeed.  So all in all things are heading in the right direction as far as my fitness is concerned at least hopefully all the other things wrong with me will take note of this and try and follow suit!!

We’ve been looking also as you know about trying to get a stair lift the last few weeks too.  Well after thinking it through properly we have decided that maybe it might not be the ideal solution.  The thing is, that more often than not after a spell at Heath Towers I always come home weaker than before and even the short walk to the stair lift is out of the question.  Also the other main reason apart from being able to go to bed is being able to have a bath.  The problem with this is that I find it almost impossible when I am feeling well to get in and out of the bath on my own and need Judith to help lift me out. So even if I were to manage to get upstairs I wouldn’t be able to bathe.  The way the bathroom is arranged too I don’t think we would be able to have some sort of lifting device put in.

SO:

The idea at the moment is to look into having a single storey extension built at the back of the house comprising of a bedroom and a bathroom.  It will only take up about a third of the garden so we will still have somewhere to sit in the blazing hot summers that we have.  Planning shouldn’t be a problem as someone further down on the estate who is wheelchair bound has had one built some time ago thus setting precedence.  We should also be able to get a Disabled Facility Grant and as Judith is now out of work we might not even have to contribute towards it financially.  I think though even if we do have to pay something it will certainly be a lot less than the other alternative which will be to move to a bungalow in the area probably meaning Judith having to return to work leaving me back on my own with no help again as well as having to get another mortgage for around £40-£50k as the bungalows around here are about that much more than our house is worth.  We have started the ball rolling by applying for the assessment etc via the Social Worker although the way things work it will take a long time to go through.

Okay I had better be going as I need to get dressed as we are off out for lunch at a nearby pub which hasn’t been doing food for a while as sadly the Landlord who is the cook has had Cancer.  Thankfully all is well now and he has started to get back into it again.  The reports about the food served there have all been amazingly good and if the fact that we had to book 2 weeks in advance for Sunday lunch is anything to go by we will in for a treat.

See Ya!!

I seem to have been so busy these last few days and do apologise for not blogging. In saying that though I think you all deserve a bit of a rest after the long blogs whilst in Heath Towers.

Okay then what have I been up to????

Well as I said in the last blog I am now in the Scooter Gang and have used any opportunity to get out and about in it. Well they say practice makes perfect don’t they? I dragged Judith out to a French Market in Bridgend on Saturday morning. I had already booked a Hire Scooter from the Shopmobility car park earlier in the week, before I had bought the Scooter and seeing as theirs was a bit more designed for outdoor use than mine we decided to use theirs instead. It was a nice one too although you would need some sort of van to be able to carry it around in. The market was very disappointing. There was only about 7 or 8 stalls selling the usual crepes and cheeses etc etc although there was this baker who sold the most delicious sort of pizzas. They were 2 thick slices of Sweet Brioche bread, filled with like an omelette with pieces of ham and potatoes mixed in topped with loads of melted cheese. Truly scrumptious indeed!! I always find it amusing when every French Market I go to seems to have more sellers with a heavy Bristol Accent instead of French. The continental market is coming soon which is usually a whole lot better. I spent the rest of the day on ironing duty with my new Steam Press. I must have ironed every single item of clothing in the house, well it felt like that anyhow. It did work in my favour though as I slept like a baby Saturday night. Out for lunch Sunday. Thought we would try somewhere new again and decided on the Star Inn in Wick Nr Cowbridge. Wick is only a small village with 2 pubs and a shop. We drove past the other pub on the way to the Star Inn and they seemed to be doing a roaring trade with the car park overflowing. When we arrived at the pub the car park was virtually empty which is unusual for this place because every time we have drove past before it always seems to be busy. Well in we go and we were gob smacked the place was completely empty, well apart from the odd spider or two, oh and the barman and the chef I hope… Having said that, the food was quite nice. Well cooked, although I suspected from the way that the gravy served up separately which was absolutely gorgeous differed immensely from the gravy that was around the Lamb on the plate. At least the roasties looked like they had actually been roasted and not deep fried like last week. Well in all that was about it on Sunday apart from a little more ironing and a general Veg out in front of the telly. Up bright and early Monday to go to my second home Heath Towers to see Merlin. My first chance to try out the Scooter on the nice shiny floors. I wish this thing had a handbrake because I could do some great handbrake turns there. I’m going to have to see if I can buy a set of slicks for it too as they would be better for floors like that. Heck, I might even get up 4.5 mph then!!!! Merlin wasn’t around so I was going to see the Silent Monk instead. It was nice to catch up with them all again in the day unit as I haven’t been there for probably 2 months now. They all made a fuss over me as only they now how too, but thinking about in now they were all a bit more interested in test driving my new motor, mmmmmm!!!!! I had the works done as usual. Blood taken, dressing changed, prescription done and drugs collected along with a bag full of things like dressing cleaning packs and sterile water etc etc and all before I went in to see the Monk. It sounds better than it was though as I was up there for around 2 and half hours before I saw him so had plenty of time to sort the rest of the stuff out. After my 20 seconds consultation with the Monk where he basically said how are you, what do you want? etc etc and making my next appointment for 2 weeks time I was off for some more stunt driving back to the car.

At home the physio is going well and I have even managed to get outside for walk on a couple of days when it has been dry. It’s nice to get some fresh air in my lungs for a change. I am still doing the same chair exercises each time they come but they are also trying to get me a bit more mobile. Yesterday I managed probably about 3 x 15 metres or so with a sit down and rest in between and today I managed around 25 metres the first go then about 15 metres the second before being pushed back to the house by the lovely Mrs Wood (Re Enablement Nurse). It won’t be long before I will be making it to the car at this rate Yipeeeeee!!!!!!!!!!!!! Then it will be having enough puff to get the chair out of the boot on my own which I think may well take some time yet. But as I seem to recall hearing somewhere a few times Onwards & Upwards!!

My time is taken up at the moment trying to get some quotes for a Stair lift. These things are so expensive and as we have this turn in the bottom it is going to cost somewhere around £4k to £5k. The other option would be to have just a straight one going up the main flight and then I would just have to walk up about 3 steps to get to it, which is not impossible although not ideal. Mrs Wood did suggest something today mind that I get a straight one for the main flight and another small straight one for the first 3 steps that way I just have to get off one and pretty much turn around and sit on the next one. I am having to try and find funding from wherever I can to help towards paying for this as we can’s afford it on our own. A few feelers have been put out such as The Local Rotary Club and the Lions Club. I will be contacting George Thomas, a local cancer Charity too for some help. Then there is Mac Millan and I heard that even the Salvation Army do help out occasionally. It is quite an odd feeling doing this, asking for money from people and I can understand why some people are not comfortable doing so but sadly for me if I want to ever get upstairs again I need this Stair lift and I cant afford it so I have no choice but to ask for help. The other problem I am facing is that our local council The Vale Of Glamorgan are to put it bluntly “IN THE POOP!!!” To the tune of around £5 Million I think it is, so there is no use even filling in the grant forms which are around 500 pages long as they will just not do anything about it. So I suppose if any of you know a nice rich person who just happens to have a spare 5 grand give em my number and tell them I will be eternally grateful.

Opppps this has turned into one of them never ending blogs again!!!!! I am sorry honest!!!!

Right back to my grovelling,

See Ya!!

If that is true I am staying firmly on solid ground!!

I have had the most extraordinary day today, well at least the last half of it anyhow. It all started when I made, along with one of my little helpers Tara, the weekly pilgrimage to far away place they call Tesco’s. I was quite looking forward to the trip today as I wanted to try out my new toy. I hear you all, “Another new toy, you must be made of money?” Well let’s just say that at this rate the redundancy pay we recently had won’t be lasting very long. I have finally bought a nifty little scooter just like this one HERE and couldn’t wait to try it out around the Race Track or should I say Tesco’s store. I’ll try and post some piccy’s soon as long as Santa delivers the camera I asked him for that is. Well after finally filling the trolley that Tara was now in full control of, god help anyone in her path, we headed off to the tills to be legally robed again. Tara was about half way through putting everything on the conveyer belt when the Fire Alarm went off. There was this almighty NOOOOOOOOO from the staff and they all looked, well how can I put it, not very happy. They eventually started ushering everyone out of the store into the dark, rainy abyss of a car park. By now the novelty of trying out the new chair was growing thin as we all stood around shivering. Why is it that I had to end up right in the middle of what must have been the Welsh Team of Smokers. They were all straight into their pockets and handbags etc as soon as they were out of the store lighting up there fags. It blinking stinks, never mind the hassle it causes my chest. Thankfully we weren’t out there for long and they called us all back in. At least they were really quick sorting things out at the tills then. The even had all the back room staff like the cleaners and delivery bay staff helping out with packing and stuff which made a huge difference, Thank You Tesco’s!! You don’t hear that too often from me I know. Right finally off back to the car. I was waiting around the back of the car for Tara to finish loading all the shopping onto the back seats and the floor when I was approached by the lady. She looked sort of middle aged and quite tidy and fairly well spoken, not that this makes any difference and I was expecting her to say something like where did you get the chair from or even you should stop working that poor girl so hard she is only young but nothing could be further from the truth. She turned around and said, “I hope you don’t take offence by this, but do you mind if I pray for you and pray for your healing too?” Well you could have knocked me down with a feather, I was completely stunned and actually had to ask her to say it again in case I totally misheard what she had said, but no she said the same thing over again, “Can I pray for you?”. Well I told her very diplomatically indeed that I was not what you would call a devout believer myself, although I would not rule out there being some other place to go to when we are all done on this planet but if it makes her happy then feel free, Pray Way!! Well she shook me a bit because all of a sudden her hand was on my shoulder and she was off, praying like, well I don’t know what, right there in the middle of a wet and dreary, busy Tesco’s Car park. I’d give her 10 out of 10 for dedication. No sooner had she arrived then she was gone off into the mist or was it exhaust smoke??. Well I must admit I did have a look around to see if Jeremy Beadle or Candid Camera were around. Tara who was quite oblivious to all this because she was busy around the side sorting all the shopping out asked what that was about. Well we both had a good chuckle about it on the way home. That was a really bizarre thing to happen even in my sometimes whacky world. I must add too that sadly as of yet there are no miracles to report however you will all be the first to know as long as I can get the laptop connection working from the beach in Hawaii.

Ah, I just realised that I haven’t posted much this week at all. I’m sure I had done although saying that the way my mind, especially my memory is at the moment anything is possible. I will try and sit down later and post about all the other delights of the week although it has been quite easy going and relaxed apart from all the visits from the Physio etc to shake up my bones and stuff, which incidentally is going well and some progress is being made.

Right I had better go and try and get 1 or 2 hours sleep as we are supposed to be going to a French Market in Bridgend later this morning and I would like to be awake at least so that I can spot all the bargains etc Ha Ha!!

See Ya!!

The Light Thingy!!

Hi gang, hope you’re all okay.  But in saying that you can’t be all that alright as you are reading this ha ha!!

Remember I have been talking recently about this new Light Treatment for my GVHD problem well I am finally getting round to doing some research on it in preparation for my next visit to see Merlin next Monday.  The Treatment is actually called Extracorporeal  Photochemotherapy.  If you can trawl through the jargon you can read a pretty concise explanation of it here.  It is quite long winded though.  The interesting part is the success rate which is around 85% and in my humble opinion not to be sneezed at!!.  Unfortunately there is always the small matter of finance because as I have said there are only 6 machines in the UK, none of which are in Wales, the nearest to me would be Birmingham.  They did shock me a little when Merlin came and told me that they were thinking more about buying their own machine and training staff to use it rather than just sending me off to wherever I could get the treatment from for example Birmingham.  The other main advantage of this treatment you will notice is that as far as I know this is the only DRUG FREE alternative available as a recognised treatment.  Well I think after all this time of willingly being pumped full of whatever pill or potion they thought would do the trick I deserve a drug free chance.  After all there is always the same chance that the drug alternative will not work and seeing as the Steroid and Cyclosporine approach which is considered as the Text Book approach to the treatment of GVHD hasn’t worked this just makes me think that the change of approach might just do it.  on another point if there is a certain element of it that is psychological then I’m sure that giving me this chance will have a lot more chance of working as I am feeling quite positive about it.  The whole process is pretty strange as it seems that just by shining some light on your blood can stop all this nasty GVHD is mind boggling although I know I have over simplified it but this is the bottom line after all.  

I’ve not found out quite yet where all these 6 machines are although the ones I do know are, there is one in Ireland, One in Birmingham and one at Guy’s In London as they showed this on City Hospital the other week.  This is the only machine apparently that is run by the Molecular Dermatology Department whereas the rest are all Haematologists.  I’m hoping that over the next few weeks or so I can gather some more useful information on this from maybe contacting the hospitals / departments directly.  So my plea to you all is that if any of you have any influence or friends in these areas that I would appreciate any help or info you are able to get.  Maybe your aunty Bella’s cousin drinks with the receptionist in the dermatology department, you know the kind of thing ha ha!!

Okay then back to normal, non grovelling jonny5.  I can’t seem to really get rid of this wheeze.  It never actually goes away for long although each day it seems to be a bit better.  I seem to be sleeping a little better which is good too.  Only getting around 6 hours or so and always ALWAYS wake up at bloody 6am thanks to the hospital.  I must say though it isn’t my chest or breathing that eventually wakes me up it is usually my bladder.  It makes sense when you think about it as it is fighting along with everything else for room in the inn so to speak.  

Physio has started albeit slowly at first.  They have decided to start off gradually by doing lots of chair exercises and will build up to doing some walking when they are a bit more confident that they will not have to pick me up off the floor.  I have noticed the last day or so that getting out the kitchen is a lot easier than it has been of late and I am not out of breath as much when I do sit out there.  This had caused some mixed reactions from both Judith and Tara.  Tara is really happy as she can now have nice tasty food and not necessessarily good for you and not the Microwave stuff she has been having.  Judith on the other hand has said that she has put on too much weight recently so all the good food I tend to cook is not really diet friendly.  I see her point as I do tend to use a lot of butter and suet and all things fatty really.  I shall have to try and control myself I think or else I will be cooking and eating on my own ha ha!!  I think I started off on the wrong foot mind you, cooking leeks in a cream sauce with pan fried salmon steaks, well the salmon is quite good for you isn’t it?

Okay then off for more surfing.  See Ya later.

See Ya!!

Well I’ve been home a few days now and in some ways it’s a bit of an anti climax. What I mean is that what you envisage things are going to be like, such as out shopping etc and being able to at least walk around downstairs without too much breathlessness are not that accurate. I am still really struggling just to do the simple things like getting dressed and maybe more so than before I went into Heath Towers. At least the physio is due to start up tomorrow when I should start to eventually see some improvement, well I blinking hope so anyhow.

I’ve not done much of anything since coming home. I managed a trip to the local Morrison’s for a change to get some much needed supplies on Friday. It was a bit of a nightmare actually. The clip on trolleys they have, when you manage to find one that is, poor Tara had to walk all over the car park looking for one, well they are designed to fit on the Morrison’s supplied wheelchairs which are naf. When you try and fit them to a standard wheelchair like mine they just don’t attach on properly and you end up like I did, having to try and hold on to it while you were pushed around. Well as you can imagine, busy Friday afternoon, not in the best of health, narrower aisles, and dodgy trolley I was not in the best of moods to say the least. Still, surprisingly the bill wasn’t as bad as I thought I was going to be after not having been shopping for a while and the fact that I had bout about £12 worth from the fish counter just for starters.

Saturday was a rest day for me too. I decided, (like I had any choice the way I am at the moment), that I would have a day of rest and relaxation. Mum and Dad came up for a natter which was nice and gave me a chance to catch up on all the latest gossip, you know how it is??. What did I cook for tea?? O yeah I remember it was pizza and garlic bread, really pushed the boat out. I had spent hours out the kitchen on Friday though cooking up a delightful Salmon Steak, served with leek Tagliatelle which was blinking gorgeous. I’ve had this recipe going around in my mind since the day I went into Heath Towers this time and was determined to cook it as soon as I got out. It was worth the wait too!!! As things are still hard work like sitting out the kitchen for hours cooking we decided to go out for Sunday Lunch as this always seems to really wear me out and besides I just didn’t fancy cooking it. living in quite a rural location has it’s benefits in this way as there are loads and loads of quaint little pubs serving up Sunday Lunch within a short distance of hear. Most of which we have tried now but the one thing they all lack is consistency. They may be great one week then poor the next which is not good. I had been told that a nearby golf club did nice Sunday Lunches so we went there today. If only I can remember who it was that told me this, as they must have been lying through their teeth. The food was lousy. Dry as hell meat, totally undercooked and un seasoned Veg, deep fried roast potatoes, I really hate when they do that, gravy wasn’t bad though. Well I couldn’t wait to get home and have a bag of crisps and some grapes for my tea.

God I’m turning into this food nerd aren’t I? I will try not too. My chest has been playing up a little over the weekend mainly I think due to the weather. It always seems worse as in more wheezy when it’s damp or rainy which it certainly has been around here and in rather large quantities too.

Well I had better get my beauty sleep as the physio will be here in the morning and I want to look my best after all don’t I?

See Ya!!

Firstly let me apologise for not blogging the last couple of days. I don’t really have any excuses just that to be honest nothing much happened and I was struggling a bit for some inspiration. Why is it that when you need something to write about like the slop stirrers usual nonsense that it all suddenly runs like clockwork and all other times there is loads and loads happening to write or in my case rant about which you have witnessed over the last 5 weeks or so by the long blogs. I do apologise for this and will try to keep them a bit smaller for a while, well TRY!! At least. I will also try and get round to answering some of the comments you’ve all made whilst I’ve been locked up. The idea of the mobile internet connection was quite a good one and did work to a fashion but there were lots of flaws. It is really expensive for one. Just to send and receive a couple of emails and maybe check on the comments on the blog for a minute was around £1.50. Hence why I never responded to the comments sorry!! The signal was not very good at Heath Towers either making it very frustrating when you were half way through checking emails say and you loose the connection. When you restart it you have to go through all the sign in stuff again which means more cost Arggg!!!!! I think its about time that the IT department looked into the matter of an internet connection on the wards as I am finding that more and more patients are now bringing in laptops and it’s a good way of keeping touch with family and friends etc when your stuck in there. It could be helpful for the doctors too as I find most of them have a laptop these days and they can maybe use them to illustrate to you in your own bed things like x-rays etc etc. The list of uses is endless. I suppose I won’t see it in my lifetime, what with the speed at which things work around here though. So till then I will have to make do with the crap connection I have now.

Okay then. I guess the title somewhat gives it away, yes I am home at last. The smooth transition between Heath Towers and Home sort of went out the window a bit. All was set for me to be released from my shackles sometime on Friday. So I thought that I would, in an attempt to get out sometime halfway descent, like when it’s still daylight on Friday I would start badgering the various people involved in the “Getting You Ready To Be Kicked Out Gang”. People like doctors who need to write up a take home drug sheet etc and nurses who need to book any appointments in clinics needed and also get together things like any dressings and syringes etc and also the Pharmacist who to be honest is the main person who can get you home early or late, because it is her or him that has to make sure all the drugs are properly supplied for you to leave and this usually involves lots of people and therefore time. It has not been uncommon in the past to be ready apart from having the drugs by about 10am and not actually getting the drugs and leaving for home at about 7pm. This is bloody annoying and never fails to wind me up. Well to my amazement all seemed to be going according to plan. The Silent Monk had written up my drug sheet by 11 am and the pharmacist was on the ward sorting out the drugs needed and going back and forth the pharmacy to get whatever she needed and the nurses had all the bits and bobs ready that I needed from them. All I really was waiting for was a couple of dressings that needed to come up from the pharmacy downstairs and I was ready for the great escape tomorrow after the physio had been in the morning. So I should be home in record time sometime time around 11 am ish WOW!!!. So I settled back for a little afternoon snooze after Judith had left about 2 o’clock so I would be a bit more alive for when the physio comes later to torture me some more. There was the distinctive rat a tat tat on the door about 2.15 and it could only be one person as the knock is very distinctive. It was Merlin. I thought he had come to have a chat or something as he had already been around with his entourage earlier on in the day. He asked me if I would mind going home today instead of tomorrow as there were a couple of transplant patients in the day unit that really needed to come in but there were no beds as usual. Although I think the real reason is a bit different and probably along the lines of “we’re sick to death of seeing you and can’t wait to kick your bum out of here etc etc etc”. so I tried to get hold of Judith to see if she could turn around and come back as she shouldn’t have got too far by now but she wasn’t answering. She finally got home about an hour later and rang me for the good news. She would have had to have gone home anyhow as she only had her little dodgem (Citroen C1) and I can’t really fit in there and pick up my chariot. She managed to pick up Tara on the way through from college and when she finally got back to Heath Towers she sent her up to get me as there was nowhere to park as usual. We only had to wait another couple of minutes before we were all packed and on our way at great speed getting the hell out of there before they changed their minds.

So, home at last and the start of a grand building up regime. I’m fairly optimistic that things will improve over time, especially if the physio or should I say the reablement team keep it up and push me like they need to. A lot will depend on the weather too as I find the damp day and also when there is sudden drops in temperature from one day to the next my chest gets really tight and wheezy which stops me from doing as much. Hopefully the weather will be kind for a little while yet to give me a head start. Again I’m hopeful that having the regular immunoglobulin will keep me out of Heath Towers too because of infections and stuff. There is some hope on the horizon regarding the skin machine thing which I will have to tell you about later as I think this blog is again heading into the realms of hugedom like the rest have been of late.

Just one last thing though. That bloody hospital!!! I managed to drop off to sleep about 11.30pm just about when the last nurse of the day comes in to do your BP and temp etc. Blow me, I was up wide awake at 6am just when the first one would have been in. See they still have control over me when I’m home!!!!!

See Ya!!

Looking Forward!!

Well it looks like the wheezyness was somewhat down to the wrong blinking nebuliser as each day I have been on this new one my chest is getting a little better.  I’m not talking miracles here but in my position every little improvement is a great thing.  My chest is still wheezy but not as bad and not as much.  What I find strange is that because my left lung seems to be the worst that would mean that in order to drain off all the built up gunge in the tubes or bronchi if you want to be clinical, I need to lie on my right hand side and that will allow it to drain off better and obviously make me more wheezy in the process.  Well you know how I like to be different?  If I lie on my right hand side whatever wheezy I had before simply disappears and I can generally breathe wheezy free and does not make the other lung drain at all.   If, however I lie on my left hand side, all hell breaks loose.  The wheeze usually starts almost immediately and gets steadily worse.  No matter what position I take after a while of lying on my left hand side the wheeze just won’t go, sometimes for hours.  It has baffled many a good physician and physio alike in the past as even the x-rays have shown in great detail that my left lung is by far the worse one and is causing all the problems.  I think there is something in the fact that I am just one strange bod in general and they can’t wait to get their hands on me when I’m gone to experiment on.  Maybe I will be regenerated as some sort of cyborg or something??

I’ve started to do some deep breathing exercises and general stretching this last couple of days.  I think it might have helped slightly although the stretching part of it can be extremely painful.  When I try and lie as flat as possible on the bed which is usually with my legs raised slightly and my head too because I just physically can’t lie dead flat, it feels like I have this huge elephant sat on my chest and stomach really making breathing nigh on impossible.  When I breathe in it is so tight my torso does not expand at all, anywhere.  This might be interesting to try when the nurse comes round to try and take my resps ha ha ha.  When sat up straight I try to take deep breaths and hold them in and then slowly, slowly breathe out till my lungs are fully deflated then slowly back in again.  Sometimes I can get a real good breath in although other times it just ends up in me coughing and spluttering away, but in general it has helped.

So apart from the usual stuff about crap food etc etc which I’m fed up of moaning about for now not a lot more has happened.  It’s a bit of a waiting game now really.  Carrying on the physio each day and wait to hear the outcome of the Pow Wow on Wednesday.  Then hopefully home on Friday or maybe Saturday morning, we’ll see.

It will be strange, as always getting home again.  After all it’s been over 5 weeks away again and always takes some time to readjust.  I’m quite looking forward to it though as hopefully with the physio and OT input at home I will be able to make some improvements to my way of life and also as a consequence of that a better quality of life too.

See Ya!!

Just Thoughts!!

Well successfully thorough another weekend of endless boredom and frustration at Heath Towers.

I managed to try and do a few exercises occasionally that the physio had left me instructions on throughout the week end as they are not around at all.  It has helped a little I hope although I won’t know till they come later, whether it has made a difference to my walking like it has every other week end. One of the problems I have is that I do at times find it hard to motivate myself to get up off my bum and do them.  We arranged for them to come in the morning along with the afternoon walking just for this point really, as I associate seeing them with exercising, not that they look like rowing machines or exercise bikes or anything.  In fact one is a Toyah Wilcox look alike  complete with bright Ginger Spiky hair and the other is Sporty Spice who has a cross to bear coming from Bristol but she copes with it well, love her..  I think it’s a vital part of the requirements of the job that you have a bit of a cruel, sadistic streak in you to enable you to get the most from your patients, but whips and electric prods these two use strikes me as a bit too much, especially when they have great big grins on their faces when using them.  I’m just glad at the moment that they are not yet regular readers of the blog or else I think my punishment rate might increase a hell of a lot.  But I just thought what about all the nurses that do read it.  OHHHHHHH NOOOOOOOO!!!!!!!!!!!  Ah well if you hear screaming emanating from my room later on you know I’ve been grassed up and am undertaking intense physio..

For a while now I have had this arrangement with Judith that whenever I am in Heath Towers she has one day off so to speak that she doesn’t come in to see me.  It is usually a Sunday and she uses the time to catch up on the housework and her other love in life Ironing Ha Ha Ha!!  Well for a change as she is really quite run down and generally worn out we decided that she would have Sunday and Monday off.  She made sure on Saturday that I was well stocked up on everything I would need for the few days like drinks and snacks etc etc.  Over time I have got used to this and I just tend to chill out in front of the goggle box or mess around on the computer to pass the time, but this week has been quite strange.  It’s now Monday morning and  the prospect of not seeing Judith till tomorrow is a little upsetting.  It’s only another 24 hours for god sake, but it’s just that I’m not used to not seeing her that’s all.  My mum and dad will be in later on which will be nice.  I really do look forward to them coming in and not just because she brings me in lots of nice goodies like the Stew and Dumplings she’s bringing in today, but because it gives me a chance to catch up on all the family stuff and my dad has this great gift of always being able to make me smile and laugh with some of things he says and does.  I’m counting the minutes.

This weekend as you know was Remembrance weekend.  Although I would never class myself as some sort of royalist I really do and always have enjoyed all the pomp and ceremony of these sorts of military arranged events.  The pride a lot of the older generation shows through when they all proudly participate at the Royal British Legion event the Albert Hall on Saturday and then again as they march past the cenotaph on Sunday morning.  It’s such a moving sight to watch them all old and young proudly displaying their medals and trying there hardest to march perfectly in time with their comrades.  It always causes mixed emotions seeing the old Chelsea Pensioners as although they are such a sight to see, each year there seems to getting less and less of them.  You can just imagine some of the stories and tales they all have to tell about there experiences.  I think, well certainly for people of my generation any how, that it is quite hard to really know what it would be like to actually live through a war.  I know there have been and in fact are wars still happening but in some way they are distant to most people as they are being carried out in far away lands and there are no bombs landing in your street etc.  If you think about it, I don’t think that today’s generation will cope with it as well as they did in say WW2.  one of the reasons I think is that back then there was still a feeling of being in a community, and to everyone it was perfectly normal for people to help each other, whereas today we have all become some what insular and don’t seem to want or need that sort of lifestyle.  

Okay then I better give me fingers a rest as the physio should be around soon dish out the first punishment of the week.

See Ya!!