“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!!
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