I didn’t sleep too well last night. Maybe it was all the excitement of going to this Coffee morning today. Just the thought of all them poor souls having to put up with my ranting and raving and generally making a bloody nuisance of myself was enough to get the old Grey Matter working overtime thinking up really awkward questions to ask and stuff. Well you know what I’m like, someone gotta keep them on their toes, and besides I’m a medical phenomenon after all!!
I didn’t really feel up to going to be truthful as my blinking chest has been playing up again the last few days, but as I had promised I would go and the fact that Judith was going to come and do the honours pushing me around in the wheelchair we made our merry way to the rather nice Hotel.
All the usual suspects were gathering there for the kill. You could see the look of despair in their faces when they saw me Ha Ha Ha. Oh I do like a good old natter and set about inflicting myself on anyone who either wanted to know or not I didn’t mind.
First up for the kill was poor old Florence Nightingale, oops I shouldn’t say old sorry, but it’s her fault as she was talking about being around when 007 and a Half (The Prof) was a Junior Doctor and he retired this week, not that I am implying anything at all. She sadly bore the brunt of it from not only me but Judith too about the state of things with me at moment health wise. I haven’t seen her for a long time so in some ways I guess it was a chance to catch up on where things are at so to speak and she also introduced a person from the Benefits Agency who had a good natter with Judith about where we will stand when Judith finishes work next month. Penelope Pitstop and Sheri & Sarah stopped by for a natter too and Mary And Karen….OOOOHHHHHH NNNNOOOOO!!!!! Now I’ve started mentioning names I am bound to forget someone and end up having an earful next time I go to the unit.. It was very interesting to speak to Sarah & Sheri as they are the ones who I have mentioned in these newly filled posts. I was interested to know what their roles and expectations were and stuff and along with these try and give them any help I ca to enable them to make others path through this easier or better etc.. I took the opportunity to pass on my praise for a Local Based Charity “The George Thomas Trust”, who have provided me with the most amazing service. Things like the Nurse that rings at least once a week and then visits my house for a natter every other week and their Social Worker. Their Councillor Sarah who regular readers will know has made so much of a difference along with things like their aids I have needed to borrow and services such as Aromatherapy and Reflexology. They all seem to have exactly the same attitude that I have found in all the staff on C1 and The Day Unit. Really helpful and caring.
I suppose the sad part was the lack of turn out from actual patients and relatives etc which to be honest was very poor. WHERE WERE YOU ALL????? But on a selfish personal level at least we sort of decided as a conglomerate that there are a number of issues that I will need to bring up with Merlin when I see him again in just over a week. Things to do with treating this blinking Chest Problem Properly, not just leaving the GVHD problem in limbo whilst waiting for an alternative treatment to be decided on. I am my own worst enemy I know as however up front I am on here in “The Real World”, if there is such a place really, I don’t tend to shout about things and demand answers and try to get things done. There are a number of reasons I guess for this and maybe I will sit down and write about that another day as I think you have had enough punishment for one day.
Before any of you chip in, it has nothing to do with consuming copious amounts of alcohol therefore clouding my thoughts.
Then Again, It Might Be????
Quick where’s that bottle let me have some more then I don’t need to think!!!!
Well thank you everyone for taking the time to listen to me and try and help and give suggestions and support I really do appreciate it and I know that Judith does greatly too.
Here I go again… god help me if I ever won an Oscar or something, I would be there all night….I’d like to thank my Mum & Dad and Family and the local hamster patrol and the binman etc etc etc etc etc……..
I’m Off,
See Ya!!
Saturday, September 30
Thursday, September 28
The Wedding Photos From Scotland!!
Hi here are a few of the Wedding photos i promised the other month from the metting of the clans in Bonnie Scotland!!
The Bride
That Dress Was Stunning!!
The Groom.
Doesn't He Look A Handsome Brute!!
The Welsh Clan
Guess Which One Is Me I Bet You Dont Get It!!
The Scotish Connection.
A Sprighly Bunch of People!!
Well There Had To Be The Kilt Wearing Contingent Didn't There?? No Peeping
Braver Than Me As The Wind Was Blowing A Bit!!
okay i'll try and post some more soon so carry on to read the newest blog IF YOU DARE!!!
See Ya!!
Hi here are a few of the Wedding photos i promised the other month from the metting of the clans in Bonnie Scotland!!
The Bride
That Dress Was Stunning!!
The Groom.
Doesn't He Look A Handsome Brute!!
The Welsh Clan
Guess Which One Is Me I Bet You Dont Get It!!
The Scotish Connection.
A Sprighly Bunch of People!!
Well There Had To Be The Kilt Wearing Contingent Didn't There?? No Peeping
Braver Than Me As The Wind Was Blowing A Bit!!
okay i'll try and post some more soon so carry on to read the newest blog IF YOU DARE!!!
See Ya!!
Food Glorious Food!!
I wish I wouldn’t speak too soon all the time. My chest has got a bit worse again the last 2 days and all was going well too. It’s still not as bad as it was but just rattly again and to top it all I was feeling sick all day yesterday and finally had to shout down the big white telephone in the evening. After that I felt a whole lot better actually and haven’t felt sick since. I think it might be something that I had eaten earlier.
I seem to be back in cookery mode at the moment although if you could see the mess I get in with my breathing and stuff you would I was mad.
Explain this to me??
When I’m sat comfortably in the armchair in the room, say watching TV or messing around on the Laptop or whatever I don’t have a problem. (Most of the times, anyway) with my breathing unless my chest is fairly bad.
However,
When I sit on a stool that we have bought which is height adjustable and set up just right for me out the kitchen I always seem to get out of breath. How can you get out of breath chopping Veg etc …..?????? I know it might be a bit warmer at times although not always and it hardly comes into the realms of strenuous exercise unless I decide to pump a few baked bean tins to keep up my athletic physique.
It doesn’t make any sense to me at all, and it happens more or less every time I am out there for more than a few minutes. The only thing I can put it down to is maybe when I sit a bit more upright, the room my lungs have to expand is reduced somewhat, but I wouldn’t think there would be that much difference. I know there is when I stand up and attempt to walk as my skin is so tight that I literally cannot breathe at any useful rate anyhow!!
Back to the cookery then.. I’ve always been a lover of Old Fashioned food. Things like Liver and Kidneys and Suet Pies, you know the things I mean. I recon a lot is down to my
Well the last few days I have cooked Liver and Bacon, Stuffed Hearts, Faggots and peas to name just a few so my Iron intake must be through the roof. I think offal is good for potassium too although not to sure but I know it is Damn Good For The Soul !!!!
All this talk of food is making me hungry again, good job I made a couple of Faggots and Stuffed Hearts too many so I can go and have a chomp on them.
For those of you who are regular readers or listeners or general sad gits of this blog, will know of Peter who I mention now and then, (If not, try reading his blog which you can get to from the link on the side of my front page), well he has had a bit of a set back recently in that the Lymphoma seems to have returned to give him some more trouble. If you’ve a few minutes spare take a look at his blog HERE and maybe leave a note of encouragement or just a Hi as I’m sure it must be quite hard to have to go back through all this again.
Peter my thoughts do go out to you and your family and remember the old adage?????? ONWARDS AND UPWARDS!!!
See Ya!!
Tuesday, September 26
Roller Coaster!!
Hiya it’s only me again back for some more fun and laughter!!
As you know I went to see Merlin yesterday and my thoughts on having to use the highly efficient hospital transport again. Well I have to say apart from a few small problems it was certainly a lot smoother than of late, things like they called at the wrong house first of all, then they parked about ½ mile away, lucky I had the wheelchair. Well off to perfect start I thought. Mmmmm not quite!! We were only picking up 1 more patient on the way in and it was sort of on the way to Heath Towers anyway. Well, when we arrived he wasn’t quite ready so we had to wait a little while. Then, when he was wheeled up into the ambulance they ended up having to un release me so that he could get his rather posh and snazzy wheelchair next to mine. Oh yes I forgot to say at the beginning that they actually turned up at 12pm which gave us a whole hour to get to Heath Towers which was very doable. Well we were off and more or less had enough time to get to my appointment on time for a change, although in saying that Merlin is always late as he has his head buried in various obscure potion and spell books in readiness to see me. Well I was thankful they had strapped me in very securely as the Woman ambulance thought she was in some Rally or something. Now I don’t mind speed at all but she was driving like a maniac through the tight lanes and I swear we must have been up on 2 wheels a few times and the fact was sat in the wheelchair on not securely on one of the seats just made matters worse. The other patient was looking a bit grey around the gills too and his poor wife who had already said that she felt a bit queasy sit backwards seemed to be fighting off the urge to, well you know what. To male things worse too the escort didn’t shut up all the way there and it was complete drivel about this partner and that partner and fights she’d had with people and stuff, quite scary at times and I wouldn’t want to cross her so I just tried to nod every now and then whilst trying to keep a close eye on which direction I was going to be thrown next!! Finally we arrived all nicely refreshed with 5 minutes to spare too and they set up shuffling us around to get off the roller coaster. After getting of she said what department are we taking you to and I hurriedly said no worries I can make it myself no problem. Well after seeing her driving I thought I couldn’t take any more of that!!
So here I am only 5 minutes late as it took me a while to push myself to the Day Unit and surprise, surprise Merlin wasn’t there yet. It gave me time to have a natter with all the staff there and catch up on any gossip etc I guess. With a puff of smoke he appeared as if by magic at 2pm, only an hour late which I quite good for him. I think he is from Jamaica or the Caribbean area and you know the pace of life there I think he still works at Jamaican pace!! Well I went in to see him and Sheri was in there too. After going through the usual stuff, how are you etc etc etc.. I brought up about not being happy with the lack of progress as far as the PUVA and Cyclosporine is doing its job or rather not doing its job. After some discussion what was agreed was that he would bring it up and the Weekly Head Mash on Wednesday, where all the Knights sit around the Round Table and have a Pow Wow along with the nurses and various others such as Biochemists etc and see what suggestions cone out of that. His feeling is that the next form of treatment would be that Cell transfusion/cleaning thing that I mentioned some time ago. It comes with one major stumbling block in that the nearest machine to here is in Birmingham and I would have to go there and back twice a week. Oh nooo more hospital transport hassle I thought but in saying that what I have known of other patients in the past they take you by car and wait around to bring you back when you are finished so wont be that bead I suppose and besides that Judith will be available to take me there soon and will no doubt relish the opportunity to go off shopping whilst she waits ha ha. Well after another nice long natter with Sheri (WHO I AM STILL LOOKING FOR A PET NAME FOR??) and the usual deposit of my precious Red Gold I was off back to concourse to arrange my flight back home. I was frightened that as I got there the couple we had picked up on the way were waiting to go back home too so they would send us back with that maniac. Well as luck would have it he went off in a taxi with a couple of others before me. They put me in a black cab with 2 others who were at least going my way. The problem was that as my wheelchair is quite large it not possible to turn it around into the right place to have the straps fitted so I was sitting sideways and totally reliant on the chairs brakes. Needless to say the first roundabout we got to in the hospital ground I tipped backwards and banged my head. It was only about 6 inches or so but could have been worse. Thankfully the driver saw this and after asking if I was alright proceeded home as if he was driving a hearse taking every corner etc at very low speed, mind you I was shaken up by that first tip that I grabbed hold of anything I could every time we got to a bend or corner.
Boy was I glad to get home after a usual run of the mill trip for me and spent most of the rest of the evening just chilling I suppose.
My chest is still not right be a long way although the new antibiotics they had put me on last Thursday seem to be having some effect and the coughing has cleared up a little although I guess it’s early day’s yet. They have apparently found in the last sample the same old culprits again, Candida and Asprigillis and along with this Merlin recons that all the other things like the Psudomonus is jumping on the band wagon just for a laugh. Well progress is progress after all and I’m grateful for what I can get these days.
Okay off for more bargain hunting online which has replaced my love of all things shopping whilst I am more stuck at home than normal at the moment.
See Ya!!
As you know I went to see Merlin yesterday and my thoughts on having to use the highly efficient hospital transport again. Well I have to say apart from a few small problems it was certainly a lot smoother than of late, things like they called at the wrong house first of all, then they parked about ½ mile away, lucky I had the wheelchair. Well off to perfect start I thought. Mmmmm not quite!! We were only picking up 1 more patient on the way in and it was sort of on the way to Heath Towers anyway. Well, when we arrived he wasn’t quite ready so we had to wait a little while. Then, when he was wheeled up into the ambulance they ended up having to un release me so that he could get his rather posh and snazzy wheelchair next to mine. Oh yes I forgot to say at the beginning that they actually turned up at 12pm which gave us a whole hour to get to Heath Towers which was very doable. Well we were off and more or less had enough time to get to my appointment on time for a change, although in saying that Merlin is always late as he has his head buried in various obscure potion and spell books in readiness to see me. Well I was thankful they had strapped me in very securely as the Woman ambulance thought she was in some Rally or something. Now I don’t mind speed at all but she was driving like a maniac through the tight lanes and I swear we must have been up on 2 wheels a few times and the fact was sat in the wheelchair on not securely on one of the seats just made matters worse. The other patient was looking a bit grey around the gills too and his poor wife who had already said that she felt a bit queasy sit backwards seemed to be fighting off the urge to, well you know what. To male things worse too the escort didn’t shut up all the way there and it was complete drivel about this partner and that partner and fights she’d had with people and stuff, quite scary at times and I wouldn’t want to cross her so I just tried to nod every now and then whilst trying to keep a close eye on which direction I was going to be thrown next!! Finally we arrived all nicely refreshed with 5 minutes to spare too and they set up shuffling us around to get off the roller coaster. After getting of she said what department are we taking you to and I hurriedly said no worries I can make it myself no problem. Well after seeing her driving I thought I couldn’t take any more of that!!
So here I am only 5 minutes late as it took me a while to push myself to the Day Unit and surprise, surprise Merlin wasn’t there yet. It gave me time to have a natter with all the staff there and catch up on any gossip etc I guess. With a puff of smoke he appeared as if by magic at 2pm, only an hour late which I quite good for him. I think he is from Jamaica or the Caribbean area and you know the pace of life there I think he still works at Jamaican pace!! Well I went in to see him and Sheri was in there too. After going through the usual stuff, how are you etc etc etc.. I brought up about not being happy with the lack of progress as far as the PUVA and Cyclosporine is doing its job or rather not doing its job. After some discussion what was agreed was that he would bring it up and the Weekly Head Mash on Wednesday, where all the Knights sit around the Round Table and have a Pow Wow along with the nurses and various others such as Biochemists etc and see what suggestions cone out of that. His feeling is that the next form of treatment would be that Cell transfusion/cleaning thing that I mentioned some time ago. It comes with one major stumbling block in that the nearest machine to here is in Birmingham and I would have to go there and back twice a week. Oh nooo more hospital transport hassle I thought but in saying that what I have known of other patients in the past they take you by car and wait around to bring you back when you are finished so wont be that bead I suppose and besides that Judith will be available to take me there soon and will no doubt relish the opportunity to go off shopping whilst she waits ha ha. Well after another nice long natter with Sheri (WHO I AM STILL LOOKING FOR A PET NAME FOR??) and the usual deposit of my precious Red Gold I was off back to concourse to arrange my flight back home. I was frightened that as I got there the couple we had picked up on the way were waiting to go back home too so they would send us back with that maniac. Well as luck would have it he went off in a taxi with a couple of others before me. They put me in a black cab with 2 others who were at least going my way. The problem was that as my wheelchair is quite large it not possible to turn it around into the right place to have the straps fitted so I was sitting sideways and totally reliant on the chairs brakes. Needless to say the first roundabout we got to in the hospital ground I tipped backwards and banged my head. It was only about 6 inches or so but could have been worse. Thankfully the driver saw this and after asking if I was alright proceeded home as if he was driving a hearse taking every corner etc at very low speed, mind you I was shaken up by that first tip that I grabbed hold of anything I could every time we got to a bend or corner.
Boy was I glad to get home after a usual run of the mill trip for me and spent most of the rest of the evening just chilling I suppose.
My chest is still not right be a long way although the new antibiotics they had put me on last Thursday seem to be having some effect and the coughing has cleared up a little although I guess it’s early day’s yet. They have apparently found in the last sample the same old culprits again, Candida and Asprigillis and along with this Merlin recons that all the other things like the Psudomonus is jumping on the band wagon just for a laugh. Well progress is progress after all and I’m grateful for what I can get these days.
Okay off for more bargain hunting online which has replaced my love of all things shopping whilst I am more stuck at home than normal at the moment.
See Ya!!
Sunday, September 24
Weekend Update
I just realised that I forget to say how I actually got home from the hospital on Thursday after all the other hassles. Well I have to admit compared to the rest of the experiences that day it went remarkably smooth. I informed the ambulance control that I was ready to go back home and as I know from all the other times I’ve used this service that I was in for at least an hours wait, so I went and did a bit of window shopping while I waited. To my amazement only 20 odd minutes after I had told them I was ready they were announcing my name over the tannoy as the ambulance was here. WOW!!!!! As well as been quick they were only taking me home and not picking up any more too and to top it all they agreed to go the way that I would go home through the country lanes which is around 6 miles shorter and a whole lot quieter apart from the odd stray sheep occasionally. So 35 minutes later I was home and I must say the St John’s Ambulance crew were really nice. Chatting about all sorts all the way home and having a laugh or two as well, which all went towards the feeling of being relaxed when I got home and not all stressed out which It may well have been!!
I don’t like to speak too soon but I think that the change of antibiotics on Thursday might be beginning to work as last night and today my coughing has eased a lot and even when I do I’m not bringing up all the muck I was before. I will say though that I’m not sure if it’s down to one of my medications or not but I have been feeling quite tired for a few days now. In the past this is sometimes brought on by my Potassium levels being low which has happened no end of times, but according to the blood results on Thursday my level is quite normal and besides the fact that I took a few potassium tablets for a day or two with no improvement so it isn’t that. Some of the other medications I’m on I know list tiredness/lethargy as a side effect but I am not on anything new really and this is a new feeling.
So what else has been happening I hear you ask? NOT!!! Well not a lot really I have been up to my usual activities Chair to Toilet and back, eat drink and try to be merry along the way, with some successes I think. Oh yeah and I have been busy out the kitchen which I do love although it nigh on kills me sometimes. I made a delicious Prawn and Veg Curry with Pilau Rice last night and today made one of my favourites a gorgous Beef Stew With DUMPLINGS!!! Yum yum…… it has to be cooked for around 3 or 4 hours recon but if you can leave it more it does seem to gather more flavour. The best way really is to make it the day before and leave it to cool and then refrigerate it as this seems to give the flavours chance to really come out, but the problem is because we are all Stew Lovers, well Dumpling Lovers really, there is no chance that any of us would leave it alone for that long. I do though try to do a bit too much so there is always a little left for the next day unless somebody swipes it in the night. Grrrrrrr!!!!
Oh yeah and my brother came up on his Motorbike for a natter, that was nice as I don’t get to see or speak to him that often as say my mother or sister. Gives me a chance to talk about another of my loves, Cars and Rallying, you know boys stuff!! Which I don’t really get chance to any other time but in saying that Tara will quite often sit and talk about all things Motor and she’s into Rallying too although she has bad taste as she follows the Citroen Team Booooooo!!!!! And as a lot of you will know I am a die hard Subaru fan although they sinking down the pan this year, ha ha ha, a bit like me really!!!
Right I’m off now as I’m knackered after watching Judith fit the new threshold and some skirting around the new French doors in the living room. I found it really hard work. I tell you what I’m thinking of hiring her out as she is so good at DIY stuff she could be worth a fortune!!!! I would like to point out that she actually made the skirting board too as in routing the edge and everything she is good!!
Okay I’m off,
See Ya!!
I don’t like to speak too soon but I think that the change of antibiotics on Thursday might be beginning to work as last night and today my coughing has eased a lot and even when I do I’m not bringing up all the muck I was before. I will say though that I’m not sure if it’s down to one of my medications or not but I have been feeling quite tired for a few days now. In the past this is sometimes brought on by my Potassium levels being low which has happened no end of times, but according to the blood results on Thursday my level is quite normal and besides the fact that I took a few potassium tablets for a day or two with no improvement so it isn’t that. Some of the other medications I’m on I know list tiredness/lethargy as a side effect but I am not on anything new really and this is a new feeling.
So what else has been happening I hear you ask? NOT!!! Well not a lot really I have been up to my usual activities Chair to Toilet and back, eat drink and try to be merry along the way, with some successes I think. Oh yeah and I have been busy out the kitchen which I do love although it nigh on kills me sometimes. I made a delicious Prawn and Veg Curry with Pilau Rice last night and today made one of my favourites a gorgous Beef Stew With DUMPLINGS!!! Yum yum…… it has to be cooked for around 3 or 4 hours recon but if you can leave it more it does seem to gather more flavour. The best way really is to make it the day before and leave it to cool and then refrigerate it as this seems to give the flavours chance to really come out, but the problem is because we are all Stew Lovers, well Dumpling Lovers really, there is no chance that any of us would leave it alone for that long. I do though try to do a bit too much so there is always a little left for the next day unless somebody swipes it in the night. Grrrrrrr!!!!
Oh yeah and my brother came up on his Motorbike for a natter, that was nice as I don’t get to see or speak to him that often as say my mother or sister. Gives me a chance to talk about another of my loves, Cars and Rallying, you know boys stuff!! Which I don’t really get chance to any other time but in saying that Tara will quite often sit and talk about all things Motor and she’s into Rallying too although she has bad taste as she follows the Citroen Team Booooooo!!!!! And as a lot of you will know I am a die hard Subaru fan although they sinking down the pan this year, ha ha ha, a bit like me really!!!
Right I’m off now as I’m knackered after watching Judith fit the new threshold and some skirting around the new French doors in the living room. I found it really hard work. I tell you what I’m thinking of hiring her out as she is so good at DIY stuff she could be worth a fortune!!!! I would like to point out that she actually made the skirting board too as in routing the edge and everything she is good!!
Okay I’m off,
See Ya!!
Thursday, September 21
Yey Made It At Last!!
Howdy. Well I thought I would write and let you know that I actually made it to Heath Towers today after Monday’s fiasco, but as you probably guessed it wasn’t as smooth an operation as any other NORMAL PERSON would have been.
Well I was extremely well prepared today. Judith had put a note on the front door for me when she left for work at 7am asking for people to knock hard as a bit deaf, (that’s a laugh, a bit deaf, more like deaf as a post ha ha) and if no reply to ring this number as I am here honest and left my telephone number obviously. I myself rose from my deep and as per usual disturbed and completely useless slumber at around 8am. I had all my clothes and stuff ready last night and just had to do the hard part putting them on, Jeeez that’s hard work these days!!! So by 8.30 I was sat suitably attired ,(well suitable for me anyhow) and started the daily grind of pill popping, if I had a penny for every pill that went in the slot I would be a very VERY rich man!! So I guess you have the picture, no way was I missing this appointment because I wasn’t ready!!!
Okay here we go then are you sitting comfortably?????
Then I shall begin…..
Once upon a time in St Athan………..
My appointment was booked for 11am and this along with the fact that I live as a lot of you know about 35-45 mins from Heath Towers By Supersonic Jet or my New Car when I can get round to driving it, are the 2 main factors to bear in mind.
Okay well here I sat waiting with remote control in hand, bags packed etc and I waited …………..and waited…………………and waited……………….and waited………………..AND WAITED!!!!! Finally at about 10.40 I rang mission control to see if they were thinking of maybe coming to collect me today or is that too much to ask?? The nice lady on the phone said yes they are definitely coming and they have your phone number too in fact they are in your area right now so they won’t be long. Great, I thought at least they are nearby, well maybe they are who knows?? 10 mins later Judith shouted in from the front as she was seeing to a delivery that they were here. Hooray they found me!! Well after loading myself and the chair up we headed around to where they had parked. Soon as she headed around the back of our house I knew that they had called at the wrong house the other day as no one ever goes that way. The ambulance escort was mumbling something about oxygen and other stuff on the way to the ambulance but to be honest with the wind howling in my hearing aids I couldn’t make out what she was saying and just sort of politely nodded no and then and dropped in the odd little giggle!! When we arrived at the ambulance she turned around and said to the driver “You were right this time it is up there”. The Swines!! Well she pushed me up the ramp into the back and said to the driver he is on oxygen as well. The driver said he is not allowed to administer oxygen and as such won’t be able to take me. YOU WHAT??? Apparently they need a paramedic or trained professional or somebody on board if a patient requires oxygen. After some very strong arguments from I said hold on there a minute then I will ring Judith in the house to come around and take the portable oxygen I had with me back home, that way I was not on oxygen according to them. I explained that I almost certainly wont need it but it is there are an emergency measure should I need it. They finally decided after telling me that I need to accept that if anything happens they won’t be able to give me their oxygen, SO BLOODY WHAT I’VE GOT ME OWN!! Right finally on the road at least heading sort of in the right direction till the driver veers off down some narrow, windy country lane and I knew then I was in for a long day!! After spending what seems like hours driving round and round the same lanes and fields we get to where the next patient lived only for him to turn round and say if you’d have come the other way it would only take you 5 mins Grrrrrr!! Right of to Heath Towers at last. NOPE, NOT YET YOU DON’T they were dropping off this other patient at another hospital and picking one other from there up at the same time before dropping me off. They wonder why my head is so messed up half the time, look what I got to deal with…… Well you will be glad to know that I finally arrived at said Heath Towers a whole 1hour 45 mins after leaving home. Let me just go and get a porter she said, NOT ON YOUR BLOODY LIFE MISSUS, I’M OFF ON MY OWN!!!!
I finally made it to the day unit nearly 2 hours late and what a relief to see all those smiling happy faces, and the nurses were a bit happy too!! They have this knack of making you feel special and are I know genuinely concerned for your well being and stuff it is quite comforting. I find too that even after mornings like this and other times I’ve been wound up by something or other they always, just by being them, calm me down. It’s almost as if there needs to be a sign on the day unit’s door saying leave all your problems outside please!! I’ll have to suggest that to Penelope when I see her next or maybe even to Sheri when I see her at the next coffee morning next week. Well I suppose after all this going on the actual appointment was totally uneventful. The nicked a load of blood as usual and then there is the obligatory 1 hour wait for the microbiologists to do their thing and be bothered to type in the results for the doctor to see. Then finally in to see one of Merlin’s many Underlings as I won’t be graced by his majestic and all powerful presence today, I’ll have to wait till Monday for that pleasure. PLEASURE??? I have to apologise profusely for not know the registrar’s name and he has been quite heavily involved in my case too, I really must find out and add him to the Hall Of Fame List as I don’t want him to feel left out, but for now I’ll just call him Doctor X. Well all is fine with the blood counts. Just a change of antibiotics needed. There was a note from the wizard on my file saying he wanted me to go back on a months course of Voriconozole, (remember, they were the ones that cost and arm and a leg and the local GP wouldn’t prescribe them) and just for safe measure he want me to take another antibiotic called Clarythromycin just in case I have any other baddies that managed to get under the radar. They had found one of the usual suspects in my last sputum sample, Candida, and these should cover it. More blinking pills!!
Crumbs this going on a bit tonight I am sorry honest, really I am….
There’s still loads to tell you too, like a lovely long natter I had with Sheri, who I hasten to add did jump the queue in the pharmacy, tut tut. I just thought now Sheri and Sarah are fulfilling these new positions they don’t come under the general wing of being nurses anymore and as a result I think they need to be honoured on here in the time honoured tradition, and no I don’t mean tie them up and force them to listen to endless hours of my drivel, they are to have pet names, so anyone with any suggestions as to a suitable or not even, name for these two lovely, sweet, adorable, helpful (can I stop grovelling now?) Ladies lets have them and also I suppose for Doctor X too as he will be needing one as well sooner of later. Also Nigel Is Back!!! He has been a Nursing Assistant on C1 since I was diagnosed at least and he decided to up sticks and emigrate to New Zealand about 3 months ago lucky bugger. Well it turns out pastures green were not as good as spending countless hours cleaning up all sorts of unpleasant things mostly from me on the ward. I must admit though it is kind of nice to have him back he’s a nice guy.
Right then I’m off for those of you still awake after trawling through this and I’ll try and remember to put a few highlights of today in the next blog if I remember them that is.
See Ya!!
Well I was extremely well prepared today. Judith had put a note on the front door for me when she left for work at 7am asking for people to knock hard as a bit deaf, (that’s a laugh, a bit deaf, more like deaf as a post ha ha) and if no reply to ring this number as I am here honest and left my telephone number obviously. I myself rose from my deep and as per usual disturbed and completely useless slumber at around 8am. I had all my clothes and stuff ready last night and just had to do the hard part putting them on, Jeeez that’s hard work these days!!! So by 8.30 I was sat suitably attired ,(well suitable for me anyhow) and started the daily grind of pill popping, if I had a penny for every pill that went in the slot I would be a very VERY rich man!! So I guess you have the picture, no way was I missing this appointment because I wasn’t ready!!!
Okay here we go then are you sitting comfortably?????
Then I shall begin…..
Once upon a time in St Athan………..
My appointment was booked for 11am and this along with the fact that I live as a lot of you know about 35-45 mins from Heath Towers By Supersonic Jet or my New Car when I can get round to driving it, are the 2 main factors to bear in mind.
Okay well here I sat waiting with remote control in hand, bags packed etc and I waited …………..and waited…………………and waited……………….and waited………………..AND WAITED!!!!! Finally at about 10.40 I rang mission control to see if they were thinking of maybe coming to collect me today or is that too much to ask?? The nice lady on the phone said yes they are definitely coming and they have your phone number too in fact they are in your area right now so they won’t be long. Great, I thought at least they are nearby, well maybe they are who knows?? 10 mins later Judith shouted in from the front as she was seeing to a delivery that they were here. Hooray they found me!! Well after loading myself and the chair up we headed around to where they had parked. Soon as she headed around the back of our house I knew that they had called at the wrong house the other day as no one ever goes that way. The ambulance escort was mumbling something about oxygen and other stuff on the way to the ambulance but to be honest with the wind howling in my hearing aids I couldn’t make out what she was saying and just sort of politely nodded no and then and dropped in the odd little giggle!! When we arrived at the ambulance she turned around and said to the driver “You were right this time it is up there”. The Swines!! Well she pushed me up the ramp into the back and said to the driver he is on oxygen as well. The driver said he is not allowed to administer oxygen and as such won’t be able to take me. YOU WHAT??? Apparently they need a paramedic or trained professional or somebody on board if a patient requires oxygen. After some very strong arguments from I said hold on there a minute then I will ring Judith in the house to come around and take the portable oxygen I had with me back home, that way I was not on oxygen according to them. I explained that I almost certainly wont need it but it is there are an emergency measure should I need it. They finally decided after telling me that I need to accept that if anything happens they won’t be able to give me their oxygen, SO BLOODY WHAT I’VE GOT ME OWN!! Right finally on the road at least heading sort of in the right direction till the driver veers off down some narrow, windy country lane and I knew then I was in for a long day!! After spending what seems like hours driving round and round the same lanes and fields we get to where the next patient lived only for him to turn round and say if you’d have come the other way it would only take you 5 mins Grrrrrr!! Right of to Heath Towers at last. NOPE, NOT YET YOU DON’T they were dropping off this other patient at another hospital and picking one other from there up at the same time before dropping me off. They wonder why my head is so messed up half the time, look what I got to deal with…… Well you will be glad to know that I finally arrived at said Heath Towers a whole 1hour 45 mins after leaving home. Let me just go and get a porter she said, NOT ON YOUR BLOODY LIFE MISSUS, I’M OFF ON MY OWN!!!!
I finally made it to the day unit nearly 2 hours late and what a relief to see all those smiling happy faces, and the nurses were a bit happy too!! They have this knack of making you feel special and are I know genuinely concerned for your well being and stuff it is quite comforting. I find too that even after mornings like this and other times I’ve been wound up by something or other they always, just by being them, calm me down. It’s almost as if there needs to be a sign on the day unit’s door saying leave all your problems outside please!! I’ll have to suggest that to Penelope when I see her next or maybe even to Sheri when I see her at the next coffee morning next week. Well I suppose after all this going on the actual appointment was totally uneventful. The nicked a load of blood as usual and then there is the obligatory 1 hour wait for the microbiologists to do their thing and be bothered to type in the results for the doctor to see. Then finally in to see one of Merlin’s many Underlings as I won’t be graced by his majestic and all powerful presence today, I’ll have to wait till Monday for that pleasure. PLEASURE??? I have to apologise profusely for not know the registrar’s name and he has been quite heavily involved in my case too, I really must find out and add him to the Hall Of Fame List as I don’t want him to feel left out, but for now I’ll just call him Doctor X. Well all is fine with the blood counts. Just a change of antibiotics needed. There was a note from the wizard on my file saying he wanted me to go back on a months course of Voriconozole, (remember, they were the ones that cost and arm and a leg and the local GP wouldn’t prescribe them) and just for safe measure he want me to take another antibiotic called Clarythromycin just in case I have any other baddies that managed to get under the radar. They had found one of the usual suspects in my last sputum sample, Candida, and these should cover it. More blinking pills!!
Crumbs this going on a bit tonight I am sorry honest, really I am….
There’s still loads to tell you too, like a lovely long natter I had with Sheri, who I hasten to add did jump the queue in the pharmacy, tut tut. I just thought now Sheri and Sarah are fulfilling these new positions they don’t come under the general wing of being nurses anymore and as a result I think they need to be honoured on here in the time honoured tradition, and no I don’t mean tie them up and force them to listen to endless hours of my drivel, they are to have pet names, so anyone with any suggestions as to a suitable or not even, name for these two lovely, sweet, adorable, helpful (can I stop grovelling now?) Ladies lets have them and also I suppose for Doctor X too as he will be needing one as well sooner of later. Also Nigel Is Back!!! He has been a Nursing Assistant on C1 since I was diagnosed at least and he decided to up sticks and emigrate to New Zealand about 3 months ago lucky bugger. Well it turns out pastures green were not as good as spending countless hours cleaning up all sorts of unpleasant things mostly from me on the ward. I must admit though it is kind of nice to have him back he’s a nice guy.
Right then I’m off for those of you still awake after trawling through this and I’ll try and remember to put a few highlights of today in the next blog if I remember them that is.
See Ya!!
Monday, September 18
I'M BLOODY ANNOYED!!!!
Let me start by apologising for that outburst but I think in this instance it is well called for.
Well as I was saying yesterday I was due to be going to see the Wizard today via the wonderful Hospital Transport system. As I have had a lot of experience with their inadequacies over the last couple of years I was up bright and early. In fact I was washed, dressed, wheelchair ready, bag packed with essential items such as a drink and some Yummy bacon crisps and even had my shoes on ready by 8 am even though they would probably not be here till around mid day. The door bell was checked as that sometimes plays up and the inside door and room door were left open so that I could hear if they just knocked the window etc. I had both my hearing aids in and turned up full blast so you could say that all bases were covered.
Well I waited and waited and waited until about 12.45 I rang to see if they were actually coming for me today bearing in mind my appointment was for 1pm and at best it will take about 35 mins to get there and that was by helicopter they were cutting it short. I got through to the wonderful and efficient NOT ambulance control office at Heath Towers and I suppose I should be grateful at east you get to speak to a human (of sorts) and not just one of those automated things only to be told that it had been recorded that there was no reply at the address. WHAT THE HECK!!!!!!! That was it I went crazy with him telling him there was no way that anyone had come within spitting distance of my house at all and explained all the measures I had put in place to make sure I was going today, hell I even shaved my patchy head in readiness last night and that really is special. He was adamant that they had called . I explained to him that they have almost certainly called at the wrong address and I know which one it s too as every time there has been a problem and strangely it only happens to the Ambulances that they send they call at the same number but the wrong road . The problem is that I live on like a path rather than an actual road. Strangely though the taxis and all other delivery people seem to find it easy enough. I ended up getting so wound up and frustrated at this guy’s attitude that I had to put the phone down and calm down. He was trying to put the blame on me for not giving them directions, WHAT CANT THEY READ A BLOODY MAP????? The other annoying thing is the house they usually call at has written around the side of it the name of the road it is actually on and not the road I live on if they can be bothered to look.
When I had calmed down a bit I rang up the day unit to explain what had happened and they were wonderful and understanding and subsequently have had to book 2 further appointment. The first being this Thursday to see one of Merlin’s underlings then again next Monday to see the Wizard himself so 2 more opportunities for hospital transport to show there total incompetence again.
All this is not doing my chest any good at all!!
To top it all I had a frantic phone call for dear Sister, Ruth not long after all this was happening to find out if I was alive and not slumped on the floor dead or something. My mum was up Heath Towers this afternoon too and decided as she had some time to kill would ask at the Hospital Transport office in the Concourse if I had actually been taken back home yet and if not she would come and hunt me down somehow either at the day unit or on the ward or more likely grabbing a bite to eat downstairs. Well they just told her that they had turned up here and got no reply and she knew from the phone call I had with her last night that I was really up for going today and was gonna be prepared. So she put one and one together and come up with three and started to panic. She rang Ruth and got her to contact me to find out. Ha ha ha ha.. Well I can laugh now but I bet she wasn’t laughing at the time. They had actually spoke to me before she had asked them so why in the hell didn’t they explain this and not let her worry like this. Oh I don’t think I am going to be able to hold back when I go up there on Thursday. Fists will fly I think, so watch this space!!!!!
See Ya!!
Well as I was saying yesterday I was due to be going to see the Wizard today via the wonderful Hospital Transport system. As I have had a lot of experience with their inadequacies over the last couple of years I was up bright and early. In fact I was washed, dressed, wheelchair ready, bag packed with essential items such as a drink and some Yummy bacon crisps and even had my shoes on ready by 8 am even though they would probably not be here till around mid day. The door bell was checked as that sometimes plays up and the inside door and room door were left open so that I could hear if they just knocked the window etc. I had both my hearing aids in and turned up full blast so you could say that all bases were covered.
Well I waited and waited and waited until about 12.45 I rang to see if they were actually coming for me today bearing in mind my appointment was for 1pm and at best it will take about 35 mins to get there and that was by helicopter they were cutting it short. I got through to the wonderful and efficient NOT ambulance control office at Heath Towers and I suppose I should be grateful at east you get to speak to a human (of sorts) and not just one of those automated things only to be told that it had been recorded that there was no reply at the address. WHAT THE HECK!!!!!!! That was it I went crazy with him telling him there was no way that anyone had come within spitting distance of my house at all and explained all the measures I had put in place to make sure I was going today, hell I even shaved my patchy head in readiness last night and that really is special. He was adamant that they had called . I explained to him that they have almost certainly called at the wrong address and I know which one it s too as every time there has been a problem and strangely it only happens to the Ambulances that they send they call at the same number but the wrong road . The problem is that I live on like a path rather than an actual road. Strangely though the taxis and all other delivery people seem to find it easy enough. I ended up getting so wound up and frustrated at this guy’s attitude that I had to put the phone down and calm down. He was trying to put the blame on me for not giving them directions, WHAT CANT THEY READ A BLOODY MAP????? The other annoying thing is the house they usually call at has written around the side of it the name of the road it is actually on and not the road I live on if they can be bothered to look.
When I had calmed down a bit I rang up the day unit to explain what had happened and they were wonderful and understanding and subsequently have had to book 2 further appointment. The first being this Thursday to see one of Merlin’s underlings then again next Monday to see the Wizard himself so 2 more opportunities for hospital transport to show there total incompetence again.
All this is not doing my chest any good at all!!
To top it all I had a frantic phone call for dear Sister, Ruth not long after all this was happening to find out if I was alive and not slumped on the floor dead or something. My mum was up Heath Towers this afternoon too and decided as she had some time to kill would ask at the Hospital Transport office in the Concourse if I had actually been taken back home yet and if not she would come and hunt me down somehow either at the day unit or on the ward or more likely grabbing a bite to eat downstairs. Well they just told her that they had turned up here and got no reply and she knew from the phone call I had with her last night that I was really up for going today and was gonna be prepared. So she put one and one together and come up with three and started to panic. She rang Ruth and got her to contact me to find out. Ha ha ha ha.. Well I can laugh now but I bet she wasn’t laughing at the time. They had actually spoke to me before she had asked them so why in the hell didn’t they explain this and not let her worry like this. Oh I don’t think I am going to be able to hold back when I go up there on Thursday. Fists will fly I think, so watch this space!!!!!
See Ya!!
Sunday, September 17
Emotions!!
Afternoon all. I’m still not doing too good at the moment. This infection doesn’t seem to getting better in a hurry. It started to but after a few days my chest flared up again making breathing a lot harder. It is a whole lot better than it was but really the I’ve been on these antibiotics for nearly 2 weeks now and they haven’t cleared it up so I think a change will be on the cards tomorrow when I venture off to see Merlin at Heath Towers.
It can be quite deceiving at times because when I am just sitting down vegging out in front of the TV or on the laptop surfing or whatever my breathing most of the times is quite normal and there is no need for oxygen at all. It gives you like a false sense of security though because when I get up to say go to the toilet or out to the kitchen, by the time I get there I am quite often gasping for breath. It usually settles after a short while when I sit down but in saying that I have noticed quite a bit at the moment that when I am sitting down out the kitchen preparing food etc I quite often struggle for breath for no reason. I think some of it is down to the GVHD, where it has made my skin so tight especially my torso and when I sit down it is making the cavity my lungs need to expand much smaller therefore I wont be able to take in adequate oxygen. When I sit in the living room it is with a poof under my legs so they are raised up and this seems to help make as much space for them to do their job.
I am finding it really hard at the moment to cope with this situation emotionally too. Things like, because of the chest problems I can’t make it upstairs so I’m back to living and sleeping downstairs. This creates a number of problems because the living room sort of turns into my bedroom and I often get the feeling that I am permanently living in bed. Also because of the way things are at the moment when friends of Judith or Tara come to visit they are bypassed to the dining room or kitchen etc and more often than not I don’t even know they have come never mind left. I get this feeling that I’m in the way or at the very least inconveniencing people. This I must say is all in my head and no one would ever dream of thinking that of me but it just gets too much at times. I really think that I am steadily going backwards and I have temporarily lost control which I don’t like at all. I do tend to make things worse at times because I’m a stubborn bugger at the best of times but when I am this bad I tend to want to push myself that little bit harder just to sort of prove to myself that I am not worthless, such as what I was saying the other day about trying to make to the car and really struggling and it always ends in tears literally. I’m so glad my hormones weren’t like this when I was growing up or I would have been a right mess.
All through this I have had these same thought and feelings etc and most of the times I find a way through whether its talking to Judith or Sarah or Chris or my mum and sister etc or quite often just writing on here and reading your wonderful comments or even by reading other peoples experiences such as Peters blog or Cass’s Cancer Giggles blog but this time I cant seem to get though it completely. I am due to go and have chat with Sarah the councillor soon so maybe that will help a bit.
I’m back using hospital transport again now for a while until Judith finishes work because Tara has started back in college. This is only really because I can’t make it to the car from the house. For anyone who has ever experienced using this service you will know what I mean when I say I really REALLY am not looking forward to it at all. My appointment with the Wizard is at 1pm although the Ambulance can turn up any time from around 10am ish to about 3pm, good job they are quite flexible at the day unit. When and in fact if at times they turn up you never know where you will be going before you actually make it to Heath Towers. It takes me around 35-50 mins to e there myself but I could take up to 2 hours with them as they will be picking up and dropping off all over the county. I used to use this service quite a lot until was able to drive myself but ten because I didn’t need the wheelchair they used to send a taxi and that way more often than not I was taken straight to the hospital but this time I need to take my wheelchair so that I can try and make my own way to the Day Unit and not have to rely on the porters as that another annoying part of this whole experience. It is not unknown for me to be up there for around 5 or 6 hours when I was seen and sorted at the Day Unit in about 1 hour just because waiting around for porters etc. This is one thing I find really strange too. After all I have been saying about my breathing being bad on exertion etc I seem to able to be able to push myself around in my wheelchair with no or very very little problem apart from people walking or worse still stopping in front of you and I don’t have any bumpers or air bags fitted to mine so it tends to hurt both of us. I haven’t I admit tried to go for a huge distance although I could quite easily get around the supermarket for the weekly shop ect, maybe its because I think all the places I have done it have been quite flat so that makes it easier. At least the hospital is flat so I shouldn’t have any worries there.
See what I mean about writing on here, I started off prior to and at the start of writing feeling quite tearful and as if I was going to burst into tears any moment, however I feel a little better and maybe even a bit more normal and useful.
Okay I’m off to try and do a bit of work on my web site that I’m building. I’ve had the domain and hosting for about 2 months now and have done very little about it so wasting my money. It will take me some time to do but it gives me something to try and focus on.
Right peeps thanks for listening and I do apologise for going on a bit today but the flood gates sort of swung open for a change and I couldn’t stop the flood.
See Ya!!
It can be quite deceiving at times because when I am just sitting down vegging out in front of the TV or on the laptop surfing or whatever my breathing most of the times is quite normal and there is no need for oxygen at all. It gives you like a false sense of security though because when I get up to say go to the toilet or out to the kitchen, by the time I get there I am quite often gasping for breath. It usually settles after a short while when I sit down but in saying that I have noticed quite a bit at the moment that when I am sitting down out the kitchen preparing food etc I quite often struggle for breath for no reason. I think some of it is down to the GVHD, where it has made my skin so tight especially my torso and when I sit down it is making the cavity my lungs need to expand much smaller therefore I wont be able to take in adequate oxygen. When I sit in the living room it is with a poof under my legs so they are raised up and this seems to help make as much space for them to do their job.
I am finding it really hard at the moment to cope with this situation emotionally too. Things like, because of the chest problems I can’t make it upstairs so I’m back to living and sleeping downstairs. This creates a number of problems because the living room sort of turns into my bedroom and I often get the feeling that I am permanently living in bed. Also because of the way things are at the moment when friends of Judith or Tara come to visit they are bypassed to the dining room or kitchen etc and more often than not I don’t even know they have come never mind left. I get this feeling that I’m in the way or at the very least inconveniencing people. This I must say is all in my head and no one would ever dream of thinking that of me but it just gets too much at times. I really think that I am steadily going backwards and I have temporarily lost control which I don’t like at all. I do tend to make things worse at times because I’m a stubborn bugger at the best of times but when I am this bad I tend to want to push myself that little bit harder just to sort of prove to myself that I am not worthless, such as what I was saying the other day about trying to make to the car and really struggling and it always ends in tears literally. I’m so glad my hormones weren’t like this when I was growing up or I would have been a right mess.
All through this I have had these same thought and feelings etc and most of the times I find a way through whether its talking to Judith or Sarah or Chris or my mum and sister etc or quite often just writing on here and reading your wonderful comments or even by reading other peoples experiences such as Peters blog or Cass’s Cancer Giggles blog but this time I cant seem to get though it completely. I am due to go and have chat with Sarah the councillor soon so maybe that will help a bit.
I’m back using hospital transport again now for a while until Judith finishes work because Tara has started back in college. This is only really because I can’t make it to the car from the house. For anyone who has ever experienced using this service you will know what I mean when I say I really REALLY am not looking forward to it at all. My appointment with the Wizard is at 1pm although the Ambulance can turn up any time from around 10am ish to about 3pm, good job they are quite flexible at the day unit. When and in fact if at times they turn up you never know where you will be going before you actually make it to Heath Towers. It takes me around 35-50 mins to e there myself but I could take up to 2 hours with them as they will be picking up and dropping off all over the county. I used to use this service quite a lot until was able to drive myself but ten because I didn’t need the wheelchair they used to send a taxi and that way more often than not I was taken straight to the hospital but this time I need to take my wheelchair so that I can try and make my own way to the Day Unit and not have to rely on the porters as that another annoying part of this whole experience. It is not unknown for me to be up there for around 5 or 6 hours when I was seen and sorted at the Day Unit in about 1 hour just because waiting around for porters etc. This is one thing I find really strange too. After all I have been saying about my breathing being bad on exertion etc I seem to able to be able to push myself around in my wheelchair with no or very very little problem apart from people walking or worse still stopping in front of you and I don’t have any bumpers or air bags fitted to mine so it tends to hurt both of us. I haven’t I admit tried to go for a huge distance although I could quite easily get around the supermarket for the weekly shop ect, maybe its because I think all the places I have done it have been quite flat so that makes it easier. At least the hospital is flat so I shouldn’t have any worries there.
See what I mean about writing on here, I started off prior to and at the start of writing feeling quite tearful and as if I was going to burst into tears any moment, however I feel a little better and maybe even a bit more normal and useful.
Okay I’m off to try and do a bit of work on my web site that I’m building. I’ve had the domain and hosting for about 2 months now and have done very little about it so wasting my money. It will take me some time to do but it gives me something to try and focus on.
Right peeps thanks for listening and I do apologise for going on a bit today but the flood gates sort of swung open for a change and I couldn’t stop the flood.
See Ya!!
Monday, September 11
Hiya peeps and peepess’s. How’s you all doing then???
I’ve been just generally taking it easy the last few days like I got a choice anyhow????? The dreaded chest seems to get better one minute then it starts getting wheezy the next which is really annoying at times. I guess on a positive note it is definitely getting better in as far as the wheezing is less and the coughing has reduced considerably. The most worrying thing though is that even with the slightest bit of exertion placed on it my body goes into warp factor 59 needing copious quantities of laughing gas (Oxygen) to try and return to a somewhat normal state. I know I’ve always had to rely on the stuff in the past but the list of times when it is needed at the moment is frighteningly huge. Just for example the walk from my Throne in the room I like to call “Mission Control” and no I don’t mean the lavvy ha ha ha, to my second favourite room the Kitchen is about 10 steps or for those in metric 3.5 kilometres I think???? Anyway even walking this short distance can result in a rather messed up jonny5. I dunno what’s up really but I hope this is not the way of the future, as at this rate I will be sitting on my throne 24/7, with just my Laptop for company and you know what I’m like if I get in the swing of it you will be subjected to hours and hours of endless nonsense on here which could be seriously bad for your mental well being.
How come I can hear the sounds of loads of people running and sirens going off??????
Hello, Hello, anyone there?
Where you all gone???
Anyone watch The Last Night At The Proms on Saturday? I love all that Pomp and Circumstance. It always cheers me up and look forward to singing along at full volume obviously, much to the neighbour’s annoyance. I’m not too keen on this skipping back and fore the different locations though in the middle of a piece of music. Why don’t they leave the main screen on the Albert Hall and let the viewer then decide via the gorgous Red Button if they want to watch the others. After all nearly all of us have got a digital setup of one kind or another these days. Beware those of you who haven’t Digit-Al will be after you soon.
Talking of Telly’s I just bought a new Freeview Digital receiver thingy for my laptop. It’s actually called a Freecom DVB-T Cardbus Digital TV / Radio Reciever. I have had as all of you nurses and some others will already know a very similar thing which runs via the USB socket. The main problem was that you used to have wires all over the place where as this one has just one cable for the aerial. It seems to have slightly better performance too which is a bonus. Pause and record Digital TV and all that stuff. Gotta be a bit careful though because the recorded files are pretty huge. Around 1gig for 45 mins recording.
Right oh I’m off peeps,
Take it easy,
See Ya!!
Jonny
I’ve been just generally taking it easy the last few days like I got a choice anyhow????? The dreaded chest seems to get better one minute then it starts getting wheezy the next which is really annoying at times. I guess on a positive note it is definitely getting better in as far as the wheezing is less and the coughing has reduced considerably. The most worrying thing though is that even with the slightest bit of exertion placed on it my body goes into warp factor 59 needing copious quantities of laughing gas (Oxygen) to try and return to a somewhat normal state. I know I’ve always had to rely on the stuff in the past but the list of times when it is needed at the moment is frighteningly huge. Just for example the walk from my Throne in the room I like to call “Mission Control” and no I don’t mean the lavvy ha ha ha, to my second favourite room the Kitchen is about 10 steps or for those in metric 3.5 kilometres I think???? Anyway even walking this short distance can result in a rather messed up jonny5. I dunno what’s up really but I hope this is not the way of the future, as at this rate I will be sitting on my throne 24/7, with just my Laptop for company and you know what I’m like if I get in the swing of it you will be subjected to hours and hours of endless nonsense on here which could be seriously bad for your mental well being.
How come I can hear the sounds of loads of people running and sirens going off??????
Hello, Hello, anyone there?
Where you all gone???
Anyone watch The Last Night At The Proms on Saturday? I love all that Pomp and Circumstance. It always cheers me up and look forward to singing along at full volume obviously, much to the neighbour’s annoyance. I’m not too keen on this skipping back and fore the different locations though in the middle of a piece of music. Why don’t they leave the main screen on the Albert Hall and let the viewer then decide via the gorgous Red Button if they want to watch the others. After all nearly all of us have got a digital setup of one kind or another these days. Beware those of you who haven’t Digit-Al will be after you soon.
Talking of Telly’s I just bought a new Freeview Digital receiver thingy for my laptop. It’s actually called a Freecom DVB-T Cardbus Digital TV / Radio Reciever. I have had as all of you nurses and some others will already know a very similar thing which runs via the USB socket. The main problem was that you used to have wires all over the place where as this one has just one cable for the aerial. It seems to have slightly better performance too which is a bonus. Pause and record Digital TV and all that stuff. Gotta be a bit careful though because the recorded files are pretty huge. Around 1gig for 45 mins recording.
Right oh I’m off peeps,
Take it easy,
See Ya!!
Jonny
Thursday, September 7
Whoops A Daisy
Hey there guys and gals, I decided that after the last blog entry I might try and at least keep up the momento, who knows it might just catch on….
Well as I pointed out my chest has not been too clever the last couple of days although to be honest the most stressfull thing I’ve done is a bit of cooking, which you might well laugh but you want to see the state of me when I have to spend long periods out there. For some reason it really gets me all breathless, truly weird!!!!! Right back to the point. I had arranged to meet up with Best Sister Number 1 for a coffee and general whinge and moan with a few laughs chucked in as we could both do with some at the moment. I was up bright and early 10am, and all prepared for the treck to the car some 50 yards away. I set off at great speed with the oxygen cylinder pumping in the required 4litres to my lungs on the way to sustain life, boy do I need it nowadays!!!! Well I got half way and started to struggle which even for me is pretty damn poor, I was very quickly running out of breath and therefore food to my muscles. The major floor to walking to the car is that there is nowhere to stop for a rest in between, so when your stuck halfway you have to make a tough decision, do you turn round and go back??(absolutely not as that would be giving up STUPIDLY in my eyes) or do you just try and struggle to the car where you can sit down and try and get your breath back??? ( the usual choice). Well I decided on the latter with I must admit with not much hope of actually making it in one piece. I reached around and turned up the oxygen to full pelt so it was now pumping out 20 litres, enough to fill up an air balloon. I made it to the car and by now I was really REALLY REALLY PANICKING. My heart was racing so my Blood Pressure must have been through the roof right alongside my Pulse rate. I was in one hell of a mess, struggling to get in any oxygen at all and the longer it was going on the more I was panicking therefore the faster my heart was racing etc etc etc. I know I shouldn’t panic but it is easier said than done when you are in that situation. I can honestly say that I have never been that scared evr before and I thought my time was up. Thankfully after about 10-15 minutes or so my heart started to slow down a little and thankfully my breath did the same and slowly but surely I started to calm down. Phew that was a close one!!!! The problem now was getting back to the house. I decided to drive there. We are living on a road which isn’t actually a road which sounds a little strange I know, but it is me after all!!! We have like this very wide path outside our house which you can drive up and use as access to your house to say drop off your shopping etc but you are not allowed to park there for any real length of time. All I had to walk was about 6 ft which even I could just about manage and then Judith could park the car later when she gets home.
I knew my chest was not that good at the moment but to be honest when I’m sat still on here or watching the telly etc I don’t notice how bad it is as I am not exerting any strain on my lungs etc..
So sorry Ruthy I suppose we will have to rearrange it some other time and at least we will have loads more to whinge about etc.
I think I will have to take that today as a lesson to NOT BE SO BLOODY STUPID AND STUBBORN!!!!! But as you all know I WON’T!!!!!!
Right I’m off for a bit of relaxing in the shape of my new found pressure release otherwise called “Online Bingo” Ha Ha Ha!!!!
See Ya!!
John
P.S hiya to all those family, friends etc who have been either posting on here or sending me your regards etc, I am truly gratefull for all your thoughts and support. After all it does help so much to know that people are rooting for you and praying for you etc etc as I’m sure people like Peter and Elspeth and Cas etc etc will agree. I will try to for all our sakes to keep up the fight and will draw on the energy I feel coming from all around to boost my reserves.
I feel a tear forming as we speak and I truly do mean it when I say a great big
Thank You!!!
Wednesday, September 6
Hey There Pop
Pickers!!
I am still around honestly but to be honest with you I have been using up all my energy and concentration and time etc to try and get through this last month or so.
I have had a number of problems really all of which are sadly not new as such but I suppose it is a part of my life now and in the future which I will have to learn to live with.
Well then where do I start??
I suppose the most logical thing would be my chest. Oh Yes, “THE CHEST”!! Well I have had in the last month alone 2 chest infections. One of which I am still suffering with at the moment. I suppose my chest will continue to be the main problem in one way or another. The first one a couple of weeks ago was down to an Asprigilis Bacteria which I have had a number of times in the past. It was treated fairly successfully with a course of the magic pills from the Wizard. Unfortunately the nasties came back not long after for the second attack, this time in the form of Candida again one which I am so so used to getting. This one is proving to be a stubborn little bugger and trying it’s best to be the end of me. He doesn’t know who he’s dealing with though!!!!!!!
I guess I’m a bit P****d off with this as I had looked forward to maybe getting some relief from the chest problems during the summer when it usually eases off a little, as I have found in the past my chest is usually worse during times of temperature changes and humidity levels etc etc and as such would be better when it’s warm and worse when it’s cold and wet. Sadly this has not turned out to be the case this year. The other thing is that I was hoping to use this time to build up a bit of general strength and fitness etc before the winter sets in but I haven’t managed it therefore I am in a worse condition than I was before I went into the last winter which is quite scary really when I think of the number of in patient visits I had last year due to infections etc.
I have started to use and in fact rely on my Oxygen supply a lot more too, which in itself is an indicator that things are not the best they could be at the moment.
Well if that’s not bad enough I had a bit of an episode about 3 weeks ago at the PUVA treatment. I had managed to get up to the staggering time of 2 mins and 40 seconds under the magic rays. It proved to be disastrous though because it actually caused me and in fact is still causing me problems so much that I haven’t been able to have any more treatment since. The extra time in there actually burnt my skin in a number of places making them really painful. Also, about 4 hours after I started to notice these small water blisters they looked like appearing all over my body but mainly on my legs. Over a day or two they started to burst and ooze this horrible looking stuff. They looked like I had in fact got some sort of infection maybe along with the burning from the treatment. Double joy for me!!!!! Unfortunately there is no quick fix for this and although it is getting a whole lot better it hasn’t cleared up yet enough for me to restart the Treatment. So alas as a result the GVHD is probably using this relapse to make up for the little it has lost since it started. I’m hoping to maybe get back into it within the next week or so. The consultant seems to think that maybe they went over the level at which my body will tolerate the Abuse they were giving it which is quite a problem in itself because if I remember rightly they were heading towards an optimum target time of around 4 ½ minutes which is a long way off yet.
I guess it’s a combination of all these things and more which is drastically slowing me down at the moment and wrecking my social life, (Like I had one already????). The drugs are adding to this as well. Some of which play havoc with the thought processes and concentration levels etc I have gone from maybe spending 10 hours a day on the computer in one shape or another to spending maybe 2 hours a week which is so not like me.
I have always taken great comfort from reading peoples comments and words of help and care along with other things such as surfing etc etc you know what I mean, in fact it truly has been a lifeline to me for such a long time now, that it is annoying that this “BLOODY THING” (Sorry Mother!!) is trying to take control of me. Hear I go again; I so don’t want to be negative as that’s letting it win which NOT an option.
Okay I am absolutely knackered now after doing this, which I hasten to add has taken me about 2 days to compile off and on due to the probs, I’m off for some hard earned rest and relaxation.
I really will try and keep it going and blog again real soon honestly!!
Hi to Mum and Ruth and Peter and Jacky and Vicky, oh this was a bad idea as I’m sure to leave someone out. I Know!! “HELLO TO EVERYONE WHO I’VE EVER KNOWN”. That should do it!!!
See Ya!!
Honestly!!
John
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