“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!!
Sunday, December 31
Tuesday, December 26
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!!
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!!
Sunday, December 17
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!!
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!!
Sunday, December 10
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!!
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!!
Wednesday, November 29
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!!
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!!
Saturday, November 25
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!!
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!!
Tuesday, November 21
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!!
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!!
Sunday, November 19
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!!
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!!
Friday, November 17
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!!
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!!
Tuesday, November 14
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!!
Monday, November 13
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!!
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!!
Saturday, November 11
Not Quite Yet!!
Had a good long chat to Merlin yesterday after he had shown the Students his vast knowledge. Most of the time he brings them to see me in particular, apart from the obvious reasons like I’m so well behaved, and good looking and a completely perfect patient, is the fact that as far as they are concerned I am a great if not perfect example of what skin GVHD is like. He generally asks the same sorts of questions and as I’ve heard it so many times before I feel like sticking my hand up and shouting “Me Sir, Me Sir, I know the answer”. He usually asks this one that always creases me and that’s, “Do you think the skin condition has impeded my ability to walk properly?” Right next to the bed are a Zimmer Frame and next to it a Wheelchair. Ha Ha Ha. It is quite worrying mind you the amount of students that are not sure and usually gets them to ask me. My usual answer is to point at the Zimmer Frame and Wheelchair saying, “What do you think”? Anyway, after our chat where I took the opportunity to bring up my feelings about the next step in the treatment plan etc and also to make the point that things seem to have slipped behind again. What I mean by this is that quite often in the past my treatment and in general the approach to my case so to speak has been going on at great speed. Then every now and then things seem to slow down and there is not much involvement and it’s almost as if you’ve been forgotten about although I know this is not the case at all. I did say that I was not too happy that thing to be put on a hold yet again till next Wednesday’s Pow Wow before a decision will be made on the light treatment etc and he did apologise about last week which I accept as I know unforeseen things can come up which are out of his control and I don’t have a problem with that at all. It’s just that it all seemed to be heading in the right direction lately. The new pro active approach with the Immunoglobulin and the physio etc etc I just don’t want it to fizzle out before it has at least had a chance to start to work as has sometimes happened in the past.
Okay then the outcome of this little chit chat was that they will continue on with the now correctly prescribed nebuliser and hopefully the wheeze will settle down in a few days. If not they will investigate further from Monday onwards when they turn the power back on downstairs, I mean when they actually open up all the other departments that have been closed because the saintly consultants require the weekends off for there shooting parties and reading the Sunday Times etc etc. “I’m Not Bitter”!!!!!!! As the physio at home can’t begin till the 20th November they will keep me in till at least next Friday maybe Saturday so that I can continue having physio in here and there will be more of a seamless transition when I do leave. Also by staying in that bit longer it gives them the chance to discuss my case again on Wednesday and then if need be start to arrange whatever the treatment for mainly the GVHD will be before I go home. It does all make sense I suppose although it does mean another week stuck in here, bored stiff.
In some ways I was rather hoping that this first visit into Heath Towers since April really wouldn’t be such a long one, it will be about 5 and half weeks this time. That’s enough punishment for any one to take. I just hope that this immunoglobulin treatment makes a difference and does help keep the infections at bay, that way I might just manage to stay out a bit more this winter. Although I know when I have to come in, I do have to come in, but it is in all fairness not the healthiest place to be and I’ve lost count of the number of times that I have gone home only to come back in almost straight away because of some bug or other that I have picked up when I was in here. Oh that reminds me, I must ask them to give me my flu jab before I go home too as it’s due.
Right then, better go unpack the suitcase again as I aint going anywhere quite yet. The one blessing I guess is my bestest favourite slop stirrer Sue is on all weekend so the food should be lovely. She spoils me rotten too with loads of Milky Coffee’s and she goes hunting for Bacon for me now and again for breakfast or for sandwiches at supper time. She really is a sweetie and a great credit to the service. I wish they would learn a thing or two from her. She works with the same food and cooker and trolley etc etc as everyone else yet she makes it taste so much better somehow. Mmmmmmm, I wonder if she is related to Merlin as he comes from a long line of magicians with extraordinary powers??? That might explain it??? I will have to investigate further I think.
See Ya!!
Okay then the outcome of this little chit chat was that they will continue on with the now correctly prescribed nebuliser and hopefully the wheeze will settle down in a few days. If not they will investigate further from Monday onwards when they turn the power back on downstairs, I mean when they actually open up all the other departments that have been closed because the saintly consultants require the weekends off for there shooting parties and reading the Sunday Times etc etc. “I’m Not Bitter”!!!!!!! As the physio at home can’t begin till the 20th November they will keep me in till at least next Friday maybe Saturday so that I can continue having physio in here and there will be more of a seamless transition when I do leave. Also by staying in that bit longer it gives them the chance to discuss my case again on Wednesday and then if need be start to arrange whatever the treatment for mainly the GVHD will be before I go home. It does all make sense I suppose although it does mean another week stuck in here, bored stiff.
In some ways I was rather hoping that this first visit into Heath Towers since April really wouldn’t be such a long one, it will be about 5 and half weeks this time. That’s enough punishment for any one to take. I just hope that this immunoglobulin treatment makes a difference and does help keep the infections at bay, that way I might just manage to stay out a bit more this winter. Although I know when I have to come in, I do have to come in, but it is in all fairness not the healthiest place to be and I’ve lost count of the number of times that I have gone home only to come back in almost straight away because of some bug or other that I have picked up when I was in here. Oh that reminds me, I must ask them to give me my flu jab before I go home too as it’s due.
Right then, better go unpack the suitcase again as I aint going anywhere quite yet. The one blessing I guess is my bestest favourite slop stirrer Sue is on all weekend so the food should be lovely. She spoils me rotten too with loads of Milky Coffee’s and she goes hunting for Bacon for me now and again for breakfast or for sandwiches at supper time. She really is a sweetie and a great credit to the service. I wish they would learn a thing or two from her. She works with the same food and cooker and trolley etc etc as everyone else yet she makes it taste so much better somehow. Mmmmmmm, I wonder if she is related to Merlin as he comes from a long line of magicians with extraordinary powers??? That might explain it??? I will have to investigate further I think.
See Ya!!
Friday, November 10
A Bit Low!!
I had a bit of a down day yesterday. I think that it was more a result of being a bit more wheezy than before and feelings that I’m never getting out of here at this rate and is it just me that’s trying to do anything about it?? I know that this just isn’t true as there are lots of things happening behind the scenes which as a patient you never see. Usually Merlin is good at passing on this sort of stuff to me as we have talked in the past about me needing to be kept informed and made to feel that I am at least somewhat involved in my treatment plan etc, and as he has not been around much this week this has added to the feelings I’ve been having. The registrar’s, although good, are not as adept I find as Merlin in being able to do this and really the impression I got yesterday explains it all. Due to one thing or another I was not seen on the normal ward round as usual. I think it was because I was in the middle of having a Reflexology Treatment which was bliss and they actually obeyed the sign on the door about not being disturbed unlike the nurses later on who didn’t. In fairness to them though the assessment woman for the home physio had turned up and said she couldn’t wait around for just 10-15 minutes for me to finish. Have you ever tried to have Reflexology whilst trying to answer all these questions on my physical abilities etc etc. Well let me tell you the reflexology benefits go flying out the window. Well back to the point I was trying to make. As a result of being missed I was eventually seen around tea time by someone who I could only describe as looking as if he belonged in a school probably wearing shorts and not in charge of patient’s lives. Don’t misunderstand me I don’t mean that he was incompetent or anything just that he was very young and didn’t seem to know much about me which all that was needed was maybe a quick look through my notes before coming in to see me. Do these people realise how bloody irritating it is to have to explain your life history to every doctor that comes to see you. It is not too bad on the ward or in day unit as they are fairly regular and see you quite often but if you were to go into A&E Jeeez. You will probably tell your story 10 times an hour. WHY DON’T YOU JUST READ THE BLOODY NOTES YOU LAZY GITS????? I would think far more of a doctor who came in and asked questions on things they have read in my notes etc than one who blatantly hasn’t. Don’t get me wrong I, as many of the nurses and doctors etc will tell, do like to natter and enjoy passing on my story of what’s happened or not to me along the way. I find it quite therapeutic actually so don’t mind at all. I quite often find that I am used as a sort of guinea pig when one of the consultants have students with them and they all have their own way of trying trick student etc too. Gelder likes to just let them stumble along coming up with all sorts of things apart from Leukaemia and never GVHD then steps in to show off his vast knowledge, most of which I have taught him, to impress them. You can read him like a book. I just sit there and laugh to myself thinking that’s just sad and needless really, but hey who am I? Gandalf hasn’t been bringing any student in for a while either. He is more to do with pre transplant patients which now I am post it has passed over to Merlin although he still keeps an interest I’m sure, and always stops to have a chat when we meet. I used to like his approach with the students and to be honest more so his little anecdotes of his life as a student etc they were so funny. He seemed to have a way of getting the students to the right answer but still making them feel like they had done it by themselves. This would be a much better way I would have thought. The other main point was he never seems to be after people to make him feel all powerful and important unlike others!!!
Well after all that babble it ended with me not being able to get through to him that I was not happy with the way my chest is at the moment and that it needs to get a whole lot better, but gave up knowing he would not do anything this time of night anyhow. I will have to wait till later when I think Merlin will be around and have it out with him.
On a positive note though the assessment woman came for the physio as I said. She asked loads of questions etc etc and seemed to be truthful not too promising. Thankfully the physiotherapist that has been treating me was here too to add her say which helped. I really did plead and beg as I could see it was heading towards a big fat NO!! If I didn’t get this I really do think I would be stuck. I would just end up deteriorating more and more and I don’t want that. She fished by saying that she had to discuss it with a colleague of hers before she would make the decision and unfortunately she will have gone home before she gets back into the office and she is then on annual leave until the week after next. Then even if they do agree to go ahead with the help it will be a week after that before they can start. OH NO, I’M NEVER GETTING OUT OF HERE!! She did say that she would try and ring the office to see if she could catch her and off she went. After a while she popped her head around the door and said that she managed to speak to her and they have thankfully agreed to take me on. It will be on a strictly trial basis and will start a week next Monday on 20th November, that is if I manage to get out of here by then. They will send someone to the house when I get out to arrange a treatment plan. Right then Merlin, lets be having you. Pull your finger out now I need to get out of here!!!!!
After a virtual cuddle from Judith via a text I managed to drop off into a fairly good, nearly unbroken sleep.
I feel like writing, “and they all lived happily ever after”, after this blog, so I will.
See Ya!!
Isn’t that weird I just finished writing this when Merlin arrived with The Quiet Monk and 3 Students in toe all with desires on my body. I pointed them in the direction of the Psychiatry department.
Well after all that babble it ended with me not being able to get through to him that I was not happy with the way my chest is at the moment and that it needs to get a whole lot better, but gave up knowing he would not do anything this time of night anyhow. I will have to wait till later when I think Merlin will be around and have it out with him.
On a positive note though the assessment woman came for the physio as I said. She asked loads of questions etc etc and seemed to be truthful not too promising. Thankfully the physiotherapist that has been treating me was here too to add her say which helped. I really did plead and beg as I could see it was heading towards a big fat NO!! If I didn’t get this I really do think I would be stuck. I would just end up deteriorating more and more and I don’t want that. She fished by saying that she had to discuss it with a colleague of hers before she would make the decision and unfortunately she will have gone home before she gets back into the office and she is then on annual leave until the week after next. Then even if they do agree to go ahead with the help it will be a week after that before they can start. OH NO, I’M NEVER GETTING OUT OF HERE!! She did say that she would try and ring the office to see if she could catch her and off she went. After a while she popped her head around the door and said that she managed to speak to her and they have thankfully agreed to take me on. It will be on a strictly trial basis and will start a week next Monday on 20th November, that is if I manage to get out of here by then. They will send someone to the house when I get out to arrange a treatment plan. Right then Merlin, lets be having you. Pull your finger out now I need to get out of here!!!!!
After a virtual cuddle from Judith via a text I managed to drop off into a fairly good, nearly unbroken sleep.
I feel like writing, “and they all lived happily ever after”, after this blog, so I will.
See Ya!!
Isn’t that weird I just finished writing this when Merlin arrived with The Quiet Monk and 3 Students in toe all with desires on my body. I pointed them in the direction of the Psychiatry department.
Thursday, November 9
Another One Of Those Days!!
Damn, damn, damn, damn, damn. I think that’s enough damn’s to make the point.
Yesterday was a bit off a disaster in many ways. All was well in the morning and for once I wasn’t really even bothered by the Heath Towers Express racing through on the dark early hours as I was actually awake and not tired too which is unusual for me. I had arranged the day before for Judith to come in a little earlier than she usually does so that she can bring me in some lunch. I had told the slop stirrer earlier what I was doing and thanks but no thanks to the cottage pie on offer I will stick to my fresh delivered meal from Judith. Well she was supposed to be coming in sometime between 12 and 1pm and when 1.30 came and she still wasn’t here I gave her a ring. Lucky I did as I woke her up, she was still asleep. She said she would be in as soon as she could and would ring me from Asda’s to see what stuff I wanted. I really fancied some stuff from the salad bar. Tomatoes and beetroot and pasta salad and stuff. Well about an hour or so later she rang. “You’ll never believe this, they don’t have a salad bar anymore”.. Oh no after all that too I was really looking forward to some. She did however then go on to say “but they do have some Bacon Hocks”, yummy, yummy. “YES PLEASE”. She was around half and hour or so from the hospital and wouldn’t be too long. Thankfully the physio’s turned up just then to assist me in my daily marathon. I was hoping that as my chest felt a little less tight that I might do a bit better than yesterday in the walking stakes and I wasn’t disappointed either. I managed a good 15 metres for the first attempt then after a much shorter rest to catch my breath I continued on to do another 3x15 metres with stops in between of course. That is by far the longest I have walked in quite some time and although I did get breathless it was back under control fairly quickly by my standards anyway. When I got back to my cell I was greeted by the intoxicating smell of my wife obviously and maybe the bacon hock too!!!!! It was a case of out of my way I am starving and attacking the joint with a sharp knife cutting off huge chunks. After a while I thought ooops I better ask if Judith wants some because at this rate it will be gone soon. I did share it with her and made sure she had all the fat free pieces as she doesn’t like the fat and I BLOODY LOVE IT!!!! It’s the best part I think.
The physio popped her head in a while later to say that the assessment team that were supposed to be coming will not be coming now till tomorrow, Thursday. Ah well I guess it is going to be one of those days where nothing else goes right.
Later on I was having a chat with the nurse responsible for my health and well being, poor girl, what has she done to be punished so harshly? She was asking if the doctors had come and told me the outcome of the Pow Wow earlier, which they hadn’t, so she went off in search of a body that resembled a medical type person, well in fact anyone who had a stethoscope around their neck would have done. Could have been an escaped mental patient for all I know. Suddenly as if by magic “The Quiet Monk” turned up. After the obligatory “how do you get Sky TV on your laptop then”? Question, loads of them always ask. I ought to buy a load of these Freeview things and each time I come in I could sell a few. I would make a killing. Well sadly it was not good news really. Merlin had to go and do an Urgent Bone Marrow Harvest so was not able to get to the Pow Wow hence they didn’t discuss my case. I must say I was none too happy really as things have gone on long enough now, but I do understand priorities. I will hopefully see him later on tomorrow to see if there is a way around this or if not it will be brought up next Wednesday. The other thing he said that he had noticed was that they had prescribed me the wrong nebuliser. The one I have been taking is called Pulmozyme and it should be Pulmocote. They are very similar except the one I was supposed to be taking contained a steroid and the one I was taking didn’t. This is a big problem really as some of these doctors’ handwriting is nigh on impossible to decipher. Even so they should have at least gave him or one of his team a call just to make sure as it’s now when I’m writing this, Thursday and I have been on them for 7 days now. What if it was doing me harm?? Good job I read all the information on the sheets about the particular drug before it gets anywhere near my body. The Pulmozyme I was taking is designed to break up the mucus that’s building up in my lungs, therefore loosening it and making it possible to cough up. This is what I remember Dr Gelder saying it was going to do when he prescribed it last week so I thought nothing of it at all. I do vaguely remember him saying something about one of the drugs he was prescribing including a steroid of some sort. Maybe it is this that has been causing the wheezyness, but in saying that the other one will probably do the same thing as that’s designed to break down the mucus too.
I’ve been sitting here thinking to myself and out loud, much to the amusement of the odd onlooker though the spy hole cut in the door, placed there just to make the whole “Being Locked In A Cell” experience more accurate, about what have they actually achieved for me after just over 4 weeks in here. The coughing has certainly changed and eased a little. I don’t appear to have any infections although there was some debate whether I actually had any when I came in. My breathing occasionally is better than it was and definitely improved in general but not by a big amount. I have been given an immune system boost that can’t really be quantified in feeling better or not, just a case of see if it stops me having as many infections etc. GVHD of the skin is unchanged at all. Still tight, still painful, still adding to my breathing problems. The big skin difference has been the sores that I have. As they are now being treated properly as in re dressed every day not once a week that the first nurse was saying it had to be done. 2 out of the 6 are almost completely healed up and the others are not too far away as well which is good. They look like they should be very very painful but thankfully due to the GVHD the skin is pretty numb so I can’t feel a thing. The physio input has been extremely useful and will remain so hopefully at home if they ever come and assess me that is. I have on times been able to walk a little further than I have for a while although I have also been at the other end of the scale when I just sitting up in bed makes me short of breath, however the general direction is Onwards & Upwards, well as Upwards as my tight skin will allow, which at the moment is about Half Mast!!. I used to be 6ft 5ins but at the moment I would think I am about 5ft 7ins fully stretched. I won’t even go into the mental torture sustained by all the problems with the slop stirrers and dirt shifters etc etc as its 3 blinking pages again before I know it.
In general I think there have been improvements, lots of which would not really be visible and it has laid a foundation to try and build on the future. I was, as usual expecting a lot more I think, which is not necessessarily a bad thing as you need to aim high don’t you, which would explain why I’m not jubilant at the progress but I assure you I am inside and now hopeful for the future again, which has not been the case of late.
Yesterday was a bit off a disaster in many ways. All was well in the morning and for once I wasn’t really even bothered by the Heath Towers Express racing through on the dark early hours as I was actually awake and not tired too which is unusual for me. I had arranged the day before for Judith to come in a little earlier than she usually does so that she can bring me in some lunch. I had told the slop stirrer earlier what I was doing and thanks but no thanks to the cottage pie on offer I will stick to my fresh delivered meal from Judith. Well she was supposed to be coming in sometime between 12 and 1pm and when 1.30 came and she still wasn’t here I gave her a ring. Lucky I did as I woke her up, she was still asleep. She said she would be in as soon as she could and would ring me from Asda’s to see what stuff I wanted. I really fancied some stuff from the salad bar. Tomatoes and beetroot and pasta salad and stuff. Well about an hour or so later she rang. “You’ll never believe this, they don’t have a salad bar anymore”.. Oh no after all that too I was really looking forward to some. She did however then go on to say “but they do have some Bacon Hocks”, yummy, yummy. “YES PLEASE”. She was around half and hour or so from the hospital and wouldn’t be too long. Thankfully the physio’s turned up just then to assist me in my daily marathon. I was hoping that as my chest felt a little less tight that I might do a bit better than yesterday in the walking stakes and I wasn’t disappointed either. I managed a good 15 metres for the first attempt then after a much shorter rest to catch my breath I continued on to do another 3x15 metres with stops in between of course. That is by far the longest I have walked in quite some time and although I did get breathless it was back under control fairly quickly by my standards anyway. When I got back to my cell I was greeted by the intoxicating smell of my wife obviously and maybe the bacon hock too!!!!! It was a case of out of my way I am starving and attacking the joint with a sharp knife cutting off huge chunks. After a while I thought ooops I better ask if Judith wants some because at this rate it will be gone soon. I did share it with her and made sure she had all the fat free pieces as she doesn’t like the fat and I BLOODY LOVE IT!!!! It’s the best part I think.
The physio popped her head in a while later to say that the assessment team that were supposed to be coming will not be coming now till tomorrow, Thursday. Ah well I guess it is going to be one of those days where nothing else goes right.
Later on I was having a chat with the nurse responsible for my health and well being, poor girl, what has she done to be punished so harshly? She was asking if the doctors had come and told me the outcome of the Pow Wow earlier, which they hadn’t, so she went off in search of a body that resembled a medical type person, well in fact anyone who had a stethoscope around their neck would have done. Could have been an escaped mental patient for all I know. Suddenly as if by magic “The Quiet Monk” turned up. After the obligatory “how do you get Sky TV on your laptop then”? Question, loads of them always ask. I ought to buy a load of these Freeview things and each time I come in I could sell a few. I would make a killing. Well sadly it was not good news really. Merlin had to go and do an Urgent Bone Marrow Harvest so was not able to get to the Pow Wow hence they didn’t discuss my case. I must say I was none too happy really as things have gone on long enough now, but I do understand priorities. I will hopefully see him later on tomorrow to see if there is a way around this or if not it will be brought up next Wednesday. The other thing he said that he had noticed was that they had prescribed me the wrong nebuliser. The one I have been taking is called Pulmozyme and it should be Pulmocote. They are very similar except the one I was supposed to be taking contained a steroid and the one I was taking didn’t. This is a big problem really as some of these doctors’ handwriting is nigh on impossible to decipher. Even so they should have at least gave him or one of his team a call just to make sure as it’s now when I’m writing this, Thursday and I have been on them for 7 days now. What if it was doing me harm?? Good job I read all the information on the sheets about the particular drug before it gets anywhere near my body. The Pulmozyme I was taking is designed to break up the mucus that’s building up in my lungs, therefore loosening it and making it possible to cough up. This is what I remember Dr Gelder saying it was going to do when he prescribed it last week so I thought nothing of it at all. I do vaguely remember him saying something about one of the drugs he was prescribing including a steroid of some sort. Maybe it is this that has been causing the wheezyness, but in saying that the other one will probably do the same thing as that’s designed to break down the mucus too.
I’ve been sitting here thinking to myself and out loud, much to the amusement of the odd onlooker though the spy hole cut in the door, placed there just to make the whole “Being Locked In A Cell” experience more accurate, about what have they actually achieved for me after just over 4 weeks in here. The coughing has certainly changed and eased a little. I don’t appear to have any infections although there was some debate whether I actually had any when I came in. My breathing occasionally is better than it was and definitely improved in general but not by a big amount. I have been given an immune system boost that can’t really be quantified in feeling better or not, just a case of see if it stops me having as many infections etc. GVHD of the skin is unchanged at all. Still tight, still painful, still adding to my breathing problems. The big skin difference has been the sores that I have. As they are now being treated properly as in re dressed every day not once a week that the first nurse was saying it had to be done. 2 out of the 6 are almost completely healed up and the others are not too far away as well which is good. They look like they should be very very painful but thankfully due to the GVHD the skin is pretty numb so I can’t feel a thing. The physio input has been extremely useful and will remain so hopefully at home if they ever come and assess me that is. I have on times been able to walk a little further than I have for a while although I have also been at the other end of the scale when I just sitting up in bed makes me short of breath, however the general direction is Onwards & Upwards, well as Upwards as my tight skin will allow, which at the moment is about Half Mast!!. I used to be 6ft 5ins but at the moment I would think I am about 5ft 7ins fully stretched. I won’t even go into the mental torture sustained by all the problems with the slop stirrers and dirt shifters etc etc as its 3 blinking pages again before I know it.
In general I think there have been improvements, lots of which would not really be visible and it has laid a foundation to try and build on the future. I was, as usual expecting a lot more I think, which is not necessessarily a bad thing as you need to aim high don’t you, which would explain why I’m not jubilant at the progress but I assure you I am inside and now hopeful for the future again, which has not been the case of late.
Wednesday, November 8
Foot-Gun-Shoot!!
This is about right for the attitude of the slop stirrer department at the moment. Listen to the latest saga you’ll have a good laugh if nothing else.
Yesterday lunchtime came and went with only the interruption of some sort of spicy flavoured ish rock hard ball of meat coloured thingy’s, swimming in a watery sea of darkish brown dishwater, I mean gravy, well it was supposed to be and scattered loosely with these tiny green what can only be described as little stones that were supposed to be peas. Actually they tasted like what you would imagine that the dried peas would taste like if you ate them raw and not soaked them. Maybe that’s what they had done, I don’t know. Then again it might be their take on Nouvell Cuisine. Well after forcing down about half of 1 of these ball things that were apparently supposed to be faggots, Ha Ha Ha, I grabbed some of my crisps for my lunch and a few grapes till Judith came in with a snack for me later. One of the nurses came in to see if I was still alive after my ordeal of lunch and asked, “Did you get your questionnaire from the slop stirrer”? “No I didn’t. When was this then”? “This lunchtime” she says. Ohhhhh do I smell a rat??? No they wouldn’t be that stupid to miss me out would they??. The nurse went off in search of my questionnaire but for one reason or another got carried away on other things and never did return with it. Anyhow as you can imagine I was beginning to write this blog already in my mind as they seem to constantly have the ability of shooting themselves in the foot and who was I not to take advantage of this free material?? Well later on when the slop stirrer came around I asked her where my questionnaire was and she said they had run out up the other end, meaning the Transplant end of the ward. Apparently they had only given her 10 questionnaires for what must be around 25 or so patients on the ward at the moment. What bloody use is that??? How will they get a fair picture if they don’t give them out to everyone, whether good or bad? The other thing is that a lot of the problems are to do with well over cooked food due to it being sat under the heaters on the trolley for ages and the other point is about not having much choice. Well as because of the temperature issues etc the Transplant end is always served first at mealtimes etc so they always start off with the widest choice and then there’s the likes of me that are served last due to be up the other end and the risk of passing on my bugs and germs to other patients, therefore I pretty much get what no one else wanted or as I have said over cooked etc etc…
I know I should feel a bit guilty at the moment. As at least in my case they have, or rather one slop stirrer called Sue (She really is a darling and spoils me rotten) has gone out of her way to go around other wards that she works on and borrowed whatever ready meals she could get her hands on just for me, but I don’t to be honest. I have only ever asked for good nutritious warm food and if that means they have to spend a fortune getting me that, then that’s their problem isn’t it? I should have asked for a Fortnum’s & Masons Hamper really shouldn’t I? Or maybe some Marks and Spencer ready meals. Have you ever tried them they are bloody gorgeous although rather pricey?
Well I suppose it all adds towards the overall information gathered on the gloomy service in here which I will be trying to pursue later.
Lunch will be bloody gorgeous today as it is coming via courier, Judith, fresh from Asda’s chilled salad bar. Yummmyyyyy!!!!
I had a brief flying visit from Merlin around supper time last night for a quick natter. I used this time to obviously re emphasise my thoughts on the idea of having this light treatment for the GVHD. He seemed pretty much in total agreement with me about trying a drug free approach for now although we will have to see what comes from the Pow Wow later on. So fingers and anything else you can physically cross for me that my telepathy works later on, as I intend to try and send them my thoughts telepathically. Who knows it might work??
On a horrible note too I had a horrific encounter relayed to me from one of the nurses last night that has just had her young Daughter dragged through hell and back needlessly at Llandough Hospital over the last few days. I felt so sorry for her as they really seemed to have made matters a whole lot worse, and mainly just because of there lack of patient care etc. Things like, standing around laughing and joking with one another outside the room when her poor daughter is vomiting beyond believe and in obvious need of attention. I will have to see her again later on to try and go through the whole thing with her because to be honest so much had happened and I don’t want to get things wrong and she was so emotional, rightly so, that I just wanted to give her time to talk it through and not sit like a journalist saying stop let me catch up etc etc. I really felt sorry for her she is such a sweetie. At least, no thanks to the staff there though, she is making a good recovery at home now.
Right catch you all tomorrow hopefully,
See Ya!!
Yesterday lunchtime came and went with only the interruption of some sort of spicy flavoured ish rock hard ball of meat coloured thingy’s, swimming in a watery sea of darkish brown dishwater, I mean gravy, well it was supposed to be and scattered loosely with these tiny green what can only be described as little stones that were supposed to be peas. Actually they tasted like what you would imagine that the dried peas would taste like if you ate them raw and not soaked them. Maybe that’s what they had done, I don’t know. Then again it might be their take on Nouvell Cuisine. Well after forcing down about half of 1 of these ball things that were apparently supposed to be faggots, Ha Ha Ha, I grabbed some of my crisps for my lunch and a few grapes till Judith came in with a snack for me later. One of the nurses came in to see if I was still alive after my ordeal of lunch and asked, “Did you get your questionnaire from the slop stirrer”? “No I didn’t. When was this then”? “This lunchtime” she says. Ohhhhh do I smell a rat??? No they wouldn’t be that stupid to miss me out would they??. The nurse went off in search of my questionnaire but for one reason or another got carried away on other things and never did return with it. Anyhow as you can imagine I was beginning to write this blog already in my mind as they seem to constantly have the ability of shooting themselves in the foot and who was I not to take advantage of this free material?? Well later on when the slop stirrer came around I asked her where my questionnaire was and she said they had run out up the other end, meaning the Transplant end of the ward. Apparently they had only given her 10 questionnaires for what must be around 25 or so patients on the ward at the moment. What bloody use is that??? How will they get a fair picture if they don’t give them out to everyone, whether good or bad? The other thing is that a lot of the problems are to do with well over cooked food due to it being sat under the heaters on the trolley for ages and the other point is about not having much choice. Well as because of the temperature issues etc the Transplant end is always served first at mealtimes etc so they always start off with the widest choice and then there’s the likes of me that are served last due to be up the other end and the risk of passing on my bugs and germs to other patients, therefore I pretty much get what no one else wanted or as I have said over cooked etc etc…
I know I should feel a bit guilty at the moment. As at least in my case they have, or rather one slop stirrer called Sue (She really is a darling and spoils me rotten) has gone out of her way to go around other wards that she works on and borrowed whatever ready meals she could get her hands on just for me, but I don’t to be honest. I have only ever asked for good nutritious warm food and if that means they have to spend a fortune getting me that, then that’s their problem isn’t it? I should have asked for a Fortnum’s & Masons Hamper really shouldn’t I? Or maybe some Marks and Spencer ready meals. Have you ever tried them they are bloody gorgeous although rather pricey?
Well I suppose it all adds towards the overall information gathered on the gloomy service in here which I will be trying to pursue later.
Lunch will be bloody gorgeous today as it is coming via courier, Judith, fresh from Asda’s chilled salad bar. Yummmyyyyy!!!!
I had a brief flying visit from Merlin around supper time last night for a quick natter. I used this time to obviously re emphasise my thoughts on the idea of having this light treatment for the GVHD. He seemed pretty much in total agreement with me about trying a drug free approach for now although we will have to see what comes from the Pow Wow later on. So fingers and anything else you can physically cross for me that my telepathy works later on, as I intend to try and send them my thoughts telepathically. Who knows it might work??
On a horrible note too I had a horrific encounter relayed to me from one of the nurses last night that has just had her young Daughter dragged through hell and back needlessly at Llandough Hospital over the last few days. I felt so sorry for her as they really seemed to have made matters a whole lot worse, and mainly just because of there lack of patient care etc. Things like, standing around laughing and joking with one another outside the room when her poor daughter is vomiting beyond believe and in obvious need of attention. I will have to see her again later on to try and go through the whole thing with her because to be honest so much had happened and I don’t want to get things wrong and she was so emotional, rightly so, that I just wanted to give her time to talk it through and not sit like a journalist saying stop let me catch up etc etc. I really felt sorry for her she is such a sweetie. At least, no thanks to the staff there though, she is making a good recovery at home now.
Right catch you all tomorrow hopefully,
See Ya!!
Tuesday, November 7
Too Far!!
Morning all. I managed to get some physio in yesterday. My chest as I have been saying was pretty wheezy and quite tight too so I wasn’t expecting miracles. I was thinking along with the wheezyness and the fact that I hadn’t done any on the weekend as like almost everyone else in here, “they don’t work weekends”, that I probably will fall back slightly. Well we headed off for the race track (The corridor into the ward) where it is a bit quieter and less chance of interruptions although I recon it’s so nobody can see how hard these slave drivers push me and use their whips far too often. On your marks, get set, GO!! I was off at the usual snails pace puffing and panting away. Well thinking back to Friday I seem to remember doing about 15 metres the first time before sitting down and to be honest I would have been happy with half of that this time. Well I’m going like a steam train stopped at the station now about -000000009 mph. Finally after about 5 metres I had to sit down quickly, panting like an I don’t know what? Jeez this was scary now as I had managed stupidly to cross what I call “The Line Of Control”. What this is, is there is a certain point at which you are, although puffing and panting away in control of your breathing and able to recover fairly easily although it still takes time. If, like I did you cross that line then you are in the realms of having no control over your breathing at all and as such you struggle to get in each breath, you start to panic which makes your breathing quicker and therefore worse. It’s very much like having an asthma attack. You start to think this is it, you are going to die because you can’t get in enough oxygen. In fairness it is a very fine line indeed and I do usually have a good idea where it is but I think because of trying to make up for the lack on the weekend etc etc. I did my usual trick and pushed too hard. I think I scared the poor physio’s again too although I’m sure it wasn’t the first or last time they have seen this. It took me some time with their words of encouragement as they could see I was in a bit of trouble to get my breathing back to normal a bit. The problem was also made worse by the tightening of my airways due to the Bronchialitis so I don’t have as much lung to use as before. Well I didn’t think it would make that much of a change but it did. I really must learn to take things slow as I keep doing things like this to myself. I just seem to have no patience in this sort of thing but I’m okay with every other thing like waiting around for people and stuff, it just doesn’t make sense. Okay then, we decided to have another little walk but this time under strict instructions to not try and kill myself again. I pushed a little although managed to get about 5 metres before slumping back in the chair puffing and panting. This time I hadn’t pushed too hard and as a result the recovery time was a lot better. We decided that it might be a good idea to stop there for the day and go back to my cell and have her do some cleverly aimed thumps on the back to try and release some of this muck that is rattling round in my lungs. I don’t like the way she grins when she is doing it though as if she is getting far too much enjoyment out of it for my liking. After a few minutes of this and some deep breathing exercises it was time to try and cough it up. Well here goes, drum roll please,brrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!! Cough, cough, cough, and cough and……………..NOTHING!!!! You can hear it rattling around it just doesn’t want to come out yet. Hopefully it will appear later on which it sometimes does, if not try again tomorrow I suppose.
Merlin flew in fresh from his hols. At least he hasn’t forgotten his timing as per usual he comes right in the middle of Lunch and it looked nice too Roast Lamb. He basically explained about having to stay in for the physio assessment etc and the changes in nebuliser’s and anti biotics that are probably causing the wheezyness so lets just wait and see for a few days. I brought up the idea of the light treatment with him. I think I explained my point fairly straight to the point and politely. I said, “I WANT THAT BLOODY TREATMENT AND I WANT IT NOW”. Subtle see? I think I put across my point of view and certainly left him in no doubt as to what that was. In a nutshell I just think that as the treatment is non evasive and doesn’t involve more drug therapy it can still be done alongside the present cyclosporine and steroids. It is much like just replacing the PUVA which was only for the skin GVHD with this new treatment which again is only for the skin GVHD. There seem to be some issues as to lack of conclusive evidence of its usefulness but there is a certain element of this with everything. My feeling is this. That any treatment they feel would help to put an end to these problems can either fail or succeed. So if there is one that involves no drugs I would rather take a chance on that before one that involves drugs. It makes sense I think.
Well at least he knows how I feel now and has said that he will bring it up at the weekly Pow wow on Wednesday. So watch this space I guess.
Okay then another long blog. I just don’t know where they are coming from at the moment. Sorry!!!!!!
See Ya!!
Merlin flew in fresh from his hols. At least he hasn’t forgotten his timing as per usual he comes right in the middle of Lunch and it looked nice too Roast Lamb. He basically explained about having to stay in for the physio assessment etc and the changes in nebuliser’s and anti biotics that are probably causing the wheezyness so lets just wait and see for a few days. I brought up the idea of the light treatment with him. I think I explained my point fairly straight to the point and politely. I said, “I WANT THAT BLOODY TREATMENT AND I WANT IT NOW”. Subtle see? I think I put across my point of view and certainly left him in no doubt as to what that was. In a nutshell I just think that as the treatment is non evasive and doesn’t involve more drug therapy it can still be done alongside the present cyclosporine and steroids. It is much like just replacing the PUVA which was only for the skin GVHD with this new treatment which again is only for the skin GVHD. There seem to be some issues as to lack of conclusive evidence of its usefulness but there is a certain element of this with everything. My feeling is this. That any treatment they feel would help to put an end to these problems can either fail or succeed. So if there is one that involves no drugs I would rather take a chance on that before one that involves drugs. It makes sense I think.
Well at least he knows how I feel now and has said that he will bring it up at the weekly Pow wow on Wednesday. So watch this space I guess.
Okay then another long blog. I just don’t know where they are coming from at the moment. Sorry!!!!!!
See Ya!!
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