To Breathe Or Not To Breathe??
I hope you are sitting comfortably as this post is quite long although it does delve into some major thoughts later on which I think would not be explained rightly in a few words or so.
I dragged Judith and my P.A (Kya) to probably my most hated place yesterday, (Llandough Hospital) for an appointment with I would guess my least favourite consultant in the Chest Clinic. I haven’t actually seen him for I guess around 8 or 9 months now as I had cancelled my last appointment as I could not see any point in attending to be put through hell on the various breathing monitoring machines, those of you that have had this experience will tell you it is not a good experience and always leaves me coughing and spluttering and generally shorter of breath for the rest of the day, and when I do eventually get to see the man he doesn’t tell me anything that I didn’t know previously, that is unless he has a brainwave and decides to give me another diagnosis to add to the 10 he has already given me to date. Merlin had suggested when I saw him last week that it might be an idea to go this time to at least have these lung function tests done to get yet another new “Base Line” figure as to my lung capacities etc.
As I had mentioned in the last blog I believe it was the gvhd had in fact risen now up to nipple level causing yet more of an obstruction to my lungs being able to expand and if left to just continue un abated it would eventually starve me of oxygen. This, of course had stirred up all sorts of visions and subsequent emotions afterwards as you can imagine. Well I know, and to be honest you would have to be extremely stupid if you didn’t, that my results would be considerably worse than previously but when faced with the facts in black and white it is at best very startling and at worse downright frightening. The machine used to collate the results of the tests have just been changed so when I was in there having them done they could not access the previous results for me to compare and had to wait to see the consultant before I could get them. Well in we went. After a bit of searching back through my notes which is no easy task as there are hundreds of them and some twiddling on the computer he came up with them and the results are as expected not very good reading. They are split up into two main categories. One figure is given as to the overall capacity of my lung and the other which is more important in some ways as this more or less determines the efficiency of the lungs too, Is the capacity of the small airways in the lungs so here they are.
Previous: Overall Capacity 1/3rd Capacity able to be used and Small Airway: 1/5th Capacity able to be used.
Yesterdays: Overall Capacity 1/5th Capacity able to be used and Small Airway: 1/10th Capacity able to be used.
The second result highlights not only the deteriation of the lungs overall but the seriousness of the lack of efficiency too.
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WARNING!!! THIS NEXT SECTION CONTAINS THOUGHTS AND FEELING WHICH SOME PEOPLE MAY NOT BE COMFORTABLE WITH SUCH AS DEATH. I DO NOT APPOLOGISE FOR THEM AS IT IN MY OPINION IS A MAJOR PIECE IN THE OVERALL PICTURE THAT HAS TO BE DEALT WITH.
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I know this has been getting worse for some time but for all sorts of reasons I guess I had just tried to not think about it as in the long term progression. Therefore it has brought on new discussions with Judith and some of the many other millions involved in my care in some way or other. Things like would I like to be taken to I.C.U to keep me alive on a machine of some sorts if I was to get say a serious case of Pneumonia? Or any other reason for me being taken there. My thoughts and wishes are fairly clear I guess in this matter although I will say that up till these last few days I had not given it much thought. My approach to this would be that if, by being treated they can give me assurances that my “Quality Of Life” would be better than it is now and not just used to prolong my life then at this moment and with the level of Quality Life I have now then I would accept treatment. If, or more likely, when my condition deteriorates to the stage where I am Bed Bound and reliant on other people to do everything for me then I will not accept treatment which I would just see as prolonging the inevitable end result, Death. There is no denying the fact that for me the future is not too bright and although various things are being done to at least stem the flow of the onslaught of the various problems the reality is that I will just continue to get worse and worse and the skin will get tighter and tighter and the lungs will eventually not be able to keep me going with enough oxygen and I would like to at least I guess be comfortable in the fact that Judith, more than anyone else isn’t faced with the horrendous decision of allowing them to treat me or not and also what I can only begin to imagine must be the hardest choice of all that many people are faced with on a daily basis and that’s, when is it time to say enough is enough and switch of the life support machine? There is too another important thing that I would like to happen and that is that I would like to “catch the last bus” or “Drive off into the distance” or “DIE” if you like, whilst at home and not in some grotty hospital connected up to all sorts of things making constant beeping noises and hidden under a mass of spaghetti like tentacles stuck up and into every available orifice. This does seem one area of Cancer Care in particular that is very good, palliative care. They seem to be very efficient in their approach and do a great job in supporting not just the Patient but all the family and other relatives and friends etc which is great relief.
So you see there will be a lot of discussion needed over the next few weeks etc and no doubt a lot of maybe more thought provoking posts as things arise. This may sound kind of strange, in fact it feels kind of strange, but in talking about Death and everything leading up to it so to speak I am feeling almost positive about it if that’s possible. Maybe uplifted might explain it better but it most certainly is not a negative feeling at all.
Okay then I am off to have a bite to eat, alas, not a bacon Sarnie as I’ve run out of a somewhat important ingredient. Bacon. Have to make do with some noodles or something.
See Ya!!
Friday, June 29
Sunday, June 24
All Clear!!
I guess it doesn’t take an idiot to work out that I have been a little quiet at the moment and I suppose there are a few out there who would have been glad of the break, a chance to regain some sense of sanity, but there has been a lot on my mind of late, much of which I have talked about in the last few postings. Stuff like the worsening mobility problems and the breathing etc ect.. I would be lying though if I was to say that this is all that is causing me some concern / distress. Just when I thought there was nothing else left out there for me to experience and I don’t mean things like Bacon Sarnies and nice juicy steaks and also the latest delicious addition to my varied diet, King Prawns in Batter from the local Chinese, which are to die for and really not fattening at all!! Back to the point, see just the thought of food sets me off on a totally different angle. About 2 weeks now I noticed a lump in that very delicate area between my legs, no not my wallet, it was in my, well , do you want me to spell it out for you?? Jeeeez, why do I find it difficult to write “it is in my Scrotum Sack, where my Testicles or Balls as they are commonly known reside”?? it is quite mobile and doesn’t appear to be connected to either testicle which as I have subsequently read is good news if there is such a thing, but as you can imagine all sorts of things spring to mind. I was thinking back to the very early days when I started out on “Chemo Highway” and remember being told then that the risk of contracting other forms of Cancer after being diagnosed with Leukaemia was a lot higher. I will admit that at first it was a case of burying my head in the sand and refusing to accept there was anything there at all, so much so that I didn’t look again for a few days. Sadly though the odd little twinge of pain and slight soreness was there to confirm that something was not right down there and I needed to get it at least looked at. I did my usual trick and kept it to myself, not even telling Judith for all the old stupid reasons which I seem to cling on to such as not wanting to be a burden or not wanting people to feel sorry for me etc etc it has appeared to have grown a little over this time although the pain felt is still the same if not maybe a little less not that this has eased the worry. Anyhow, I decided that as I was to go and see Merlin last Friday I would hang on till then and have a word with him. I obviously had to tell Judith before then which was quite hard actually. She has been a real rock for me to cling to all through this and just seems to always have the right things to say at the right times. No matter what I put her through she always bounces back. I could probably write a whole encyclopaedia on what she has done for me, especially these last few years and I love her to bits, well, what’s left of me does!! So when I went to see Merlin Friday he sent me for an ultrasound scan as a preliminary check to see what was happening. When I finally managed to get myself in a position that the radiologist could examine me due to my breathing being exceptionally bad that day he had a good old poke around. He assured me that I had a perfectly fine, normal pair of Testicles and that the lump was nothing to be concerned about at all. It was most probably some kind of cist or swelling around where they has tied up the tubes many years ago during the vasectomy. I must admit I did have a feeling of relief, as although I had pretty much convinced myself it was nothing by the time I had got there it did help to get a more, lets say, professional diagnosis. So just basically keep an eye on it and if it continues to grow or become more painful to arrange to go back.
Between Judith and myself I think we put Merlin straight in the sort of major problems I am now having to cope with. Up till now the skin gvhd on the lower half of my body has started at the level of my belly button and gone right down to my toes. Now though, on examination he found that it has moved over the last 2-3 months up in line with my nipples, a change of around 7-8 inches I guess, quite considerable. The obvious main problem with this is that this tightness will have a direct effect on my lungs being able to expand as the room available will be less. The seriousness is also that left uncontrolled the result will end up me not being able to breathe in enough oxygen to sustain life, which as you see, may cause a few complications. As the ongoing squabbling over who is going to fund the Extracorporeal treatment continues on, some 9 months after it was suggested that it would be of benefit for me, we are pretty much struggling to find other forms of treatment. Merlin has decided to put me on a course of Methotrexate once a week, which should have the desired effect of at least slowing down the gvhd army’s onslaught I have had a dose or two of this in the past but then it was as part of the overall Chemo regime and much higher doses too. He has put me on 10mg once a week which should keep me out of the sickness zone so to speak. There are as usual the same old side effects such as sickness and stomach problems, but the main one with this drug is Mouth Sores of which Peter explains all on his postings lately even forcing him to for go the odd Bacon Sarnie which is deadly serious indeed. I am hoping to not be able to compare notes on levels or soreness if that’s okay by you Peter??
I feel like Michelin man at the moment due to the dreaded water retention which seems to be pretty severe at the moment.
Right off for a surf around as I think I have bored you all quite enough for one day.
See Ya!!
I guess it doesn’t take an idiot to work out that I have been a little quiet at the moment and I suppose there are a few out there who would have been glad of the break, a chance to regain some sense of sanity, but there has been a lot on my mind of late, much of which I have talked about in the last few postings. Stuff like the worsening mobility problems and the breathing etc ect.. I would be lying though if I was to say that this is all that is causing me some concern / distress. Just when I thought there was nothing else left out there for me to experience and I don’t mean things like Bacon Sarnies and nice juicy steaks and also the latest delicious addition to my varied diet, King Prawns in Batter from the local Chinese, which are to die for and really not fattening at all!! Back to the point, see just the thought of food sets me off on a totally different angle. About 2 weeks now I noticed a lump in that very delicate area between my legs, no not my wallet, it was in my, well , do you want me to spell it out for you?? Jeeeez, why do I find it difficult to write “it is in my Scrotum Sack, where my Testicles or Balls as they are commonly known reside”?? it is quite mobile and doesn’t appear to be connected to either testicle which as I have subsequently read is good news if there is such a thing, but as you can imagine all sorts of things spring to mind. I was thinking back to the very early days when I started out on “Chemo Highway” and remember being told then that the risk of contracting other forms of Cancer after being diagnosed with Leukaemia was a lot higher. I will admit that at first it was a case of burying my head in the sand and refusing to accept there was anything there at all, so much so that I didn’t look again for a few days. Sadly though the odd little twinge of pain and slight soreness was there to confirm that something was not right down there and I needed to get it at least looked at. I did my usual trick and kept it to myself, not even telling Judith for all the old stupid reasons which I seem to cling on to such as not wanting to be a burden or not wanting people to feel sorry for me etc etc it has appeared to have grown a little over this time although the pain felt is still the same if not maybe a little less not that this has eased the worry. Anyhow, I decided that as I was to go and see Merlin last Friday I would hang on till then and have a word with him. I obviously had to tell Judith before then which was quite hard actually. She has been a real rock for me to cling to all through this and just seems to always have the right things to say at the right times. No matter what I put her through she always bounces back. I could probably write a whole encyclopaedia on what she has done for me, especially these last few years and I love her to bits, well, what’s left of me does!! So when I went to see Merlin Friday he sent me for an ultrasound scan as a preliminary check to see what was happening. When I finally managed to get myself in a position that the radiologist could examine me due to my breathing being exceptionally bad that day he had a good old poke around. He assured me that I had a perfectly fine, normal pair of Testicles and that the lump was nothing to be concerned about at all. It was most probably some kind of cist or swelling around where they has tied up the tubes many years ago during the vasectomy. I must admit I did have a feeling of relief, as although I had pretty much convinced myself it was nothing by the time I had got there it did help to get a more, lets say, professional diagnosis. So just basically keep an eye on it and if it continues to grow or become more painful to arrange to go back.
Between Judith and myself I think we put Merlin straight in the sort of major problems I am now having to cope with. Up till now the skin gvhd on the lower half of my body has started at the level of my belly button and gone right down to my toes. Now though, on examination he found that it has moved over the last 2-3 months up in line with my nipples, a change of around 7-8 inches I guess, quite considerable. The obvious main problem with this is that this tightness will have a direct effect on my lungs being able to expand as the room available will be less. The seriousness is also that left uncontrolled the result will end up me not being able to breathe in enough oxygen to sustain life, which as you see, may cause a few complications. As the ongoing squabbling over who is going to fund the Extracorporeal treatment continues on, some 9 months after it was suggested that it would be of benefit for me, we are pretty much struggling to find other forms of treatment. Merlin has decided to put me on a course of Methotrexate once a week, which should have the desired effect of at least slowing down the gvhd army’s onslaught I have had a dose or two of this in the past but then it was as part of the overall Chemo regime and much higher doses too. He has put me on 10mg once a week which should keep me out of the sickness zone so to speak. There are as usual the same old side effects such as sickness and stomach problems, but the main one with this drug is Mouth Sores of which Peter explains all on his postings lately even forcing him to for go the odd Bacon Sarnie which is deadly serious indeed. I am hoping to not be able to compare notes on levels or soreness if that’s okay by you Peter??
I feel like Michelin man at the moment due to the dreaded water retention which seems to be pretty severe at the moment.
Right off for a surf around as I think I have bored you all quite enough for one day.
See Ya!!
Wednesday, June 20
Wrong Or What??
How wrong is this?? An elderly resident at a nursing Home, whose rights are not considered to be covered under the European Human Rights Act, yet some bloody religious fanatic, who decides to take it upon himself to strap a bomb on his/her back and set it off in a crowded place killing possibly hundreds of innocent people in the process is!!! This surely is not morally right. I know that in this country the present day, almost unhealthy obsession with all things being “Politically Correct” is to a very minor, in my opinion, needed but is it just me that believes we have already gone way, way, way too far? I thought we had gone too far when children were no longer taught the great old classic, “Bah, Bah Black Sheep” as it was now considered racist, but the finishing straw for me was recently when they have now stopped pupils from putting up their hands when wanting to answer questions in class. Are they having a laugh or what??? I have had this thing for a while now that the various Disability Action Groups etc, who’s intentions are quite honourable, standing up for equality and peoples rights etc, all of which are so badly needed, but so many of these seem to spend so much energy on what I would consider a trivial matter what Disabled People are called. To me, being disabled myself, I really couldn’t care less what you call me, be it “Cripple”, “Spastic” etc etc, but I care a whole lot more about being given equal rights to Employment, Education, Transport, Bacon Sarnies etc etc, isn’t that what is important after all??? I guess it may not grind on my nerves so much if it didn’t change so blinking often. It seems that every year or two we have to now refer to Cripples like myself as something new. Maybe the next one could be something like “Bacon Muncher”, but I guess saying that might offend the Muslim population because of the whole pork thing, oh yeah and all the Veggies out there too. Back to the drawing board then!!!
I think I must have mentioned somewhere in the deepest realms of the many previous rantings my issues regarding having a bed downstairs in the Living Room. as you will know, I haven’t actually slept in a bed, apart from the many stays in “Heath Towers” that is, for far too long to remember now, despite almost continuous hinting and more recently attempting to beat me into doing it from all concerned such as District Nurses, Doctors etc. Well, on Monday I finally caved in to all this pressure and asked the District Nurse to arrange it for me to have one of the All Singing, All Dancing Hospital Beds delivered, which is actually coming tomorrow morning. I am hoping it will at least help somewhat in trying to sort out my sleeping pattern by actually allowing me get some in the first place, might help. My main concern was that I just didn’t want the room to turn into a hospital like room for all sorts of reasons but when you get to the stage I am at, not sleeping more than about 1 to 2 hours on a good night that is, I actually had 20 mins the night before last, which made me into a right mess all day yesterday, and actually stopped me going shopping which I was really looking forward to after day centre, it is time for a change I think. I suppose even if I wasn’t to sleep much more, because of the control over the positions it will be able to go I will be somewhat more comfortable than the already fairly comfortable reclining chair I am using 24 hrs a day at present. The one major downside is that poor old Judith is having to do some major furniture shifting to be able to fit it in, and it will unfortunately leave me with just 2 chairs including the recliner and the bed to sit on and no sofa due to lack of space, but we will just have to get used to it.
Dentist today too which wasn’t too eventful. They just ended up grinding down a few stumps which used to be teeth, but are now damaged down to almost just roots that are left in readiness for having a complete denture to replace the almost complete one I have already in place in the bottom. The next step is to do the top one which will be a little different as they need to take out 2 back teeth before changing the denture, OUCH!!!!
See Ya!!
How wrong is this?? An elderly resident at a nursing Home, whose rights are not considered to be covered under the European Human Rights Act, yet some bloody religious fanatic, who decides to take it upon himself to strap a bomb on his/her back and set it off in a crowded place killing possibly hundreds of innocent people in the process is!!! This surely is not morally right. I know that in this country the present day, almost unhealthy obsession with all things being “Politically Correct” is to a very minor, in my opinion, needed but is it just me that believes we have already gone way, way, way too far? I thought we had gone too far when children were no longer taught the great old classic, “Bah, Bah Black Sheep” as it was now considered racist, but the finishing straw for me was recently when they have now stopped pupils from putting up their hands when wanting to answer questions in class. Are they having a laugh or what??? I have had this thing for a while now that the various Disability Action Groups etc, who’s intentions are quite honourable, standing up for equality and peoples rights etc, all of which are so badly needed, but so many of these seem to spend so much energy on what I would consider a trivial matter what Disabled People are called. To me, being disabled myself, I really couldn’t care less what you call me, be it “Cripple”, “Spastic” etc etc, but I care a whole lot more about being given equal rights to Employment, Education, Transport, Bacon Sarnies etc etc, isn’t that what is important after all??? I guess it may not grind on my nerves so much if it didn’t change so blinking often. It seems that every year or two we have to now refer to Cripples like myself as something new. Maybe the next one could be something like “Bacon Muncher”, but I guess saying that might offend the Muslim population because of the whole pork thing, oh yeah and all the Veggies out there too. Back to the drawing board then!!!
I think I must have mentioned somewhere in the deepest realms of the many previous rantings my issues regarding having a bed downstairs in the Living Room. as you will know, I haven’t actually slept in a bed, apart from the many stays in “Heath Towers” that is, for far too long to remember now, despite almost continuous hinting and more recently attempting to beat me into doing it from all concerned such as District Nurses, Doctors etc. Well, on Monday I finally caved in to all this pressure and asked the District Nurse to arrange it for me to have one of the All Singing, All Dancing Hospital Beds delivered, which is actually coming tomorrow morning. I am hoping it will at least help somewhat in trying to sort out my sleeping pattern by actually allowing me get some in the first place, might help. My main concern was that I just didn’t want the room to turn into a hospital like room for all sorts of reasons but when you get to the stage I am at, not sleeping more than about 1 to 2 hours on a good night that is, I actually had 20 mins the night before last, which made me into a right mess all day yesterday, and actually stopped me going shopping which I was really looking forward to after day centre, it is time for a change I think. I suppose even if I wasn’t to sleep much more, because of the control over the positions it will be able to go I will be somewhat more comfortable than the already fairly comfortable reclining chair I am using 24 hrs a day at present. The one major downside is that poor old Judith is having to do some major furniture shifting to be able to fit it in, and it will unfortunately leave me with just 2 chairs including the recliner and the bed to sit on and no sofa due to lack of space, but we will just have to get used to it.
Dentist today too which wasn’t too eventful. They just ended up grinding down a few stumps which used to be teeth, but are now damaged down to almost just roots that are left in readiness for having a complete denture to replace the almost complete one I have already in place in the bottom. The next step is to do the top one which will be a little different as they need to take out 2 back teeth before changing the denture, OUCH!!!!
See Ya!!
Monday, June 18
Deep, Deep Down!!!
Oops has it really nearly been a week since I last inflicted my rantings on you lucky things. Think yourselves lucky as it hopefully doesn’t happen too often.
I guess a lot of my time has been taken up, trying to get my head around the changes that are happening in my life some of which as you may have gathered by now require a lot of getting around so to speak. I have been finding more and more that the old negative demons that have appeared from time to time in the past, trying their best to drag me into their pit of depression are screaming more loudly than usual and I would be a liar if I was to say I have not at least spent some time in their company. I’ve had many a thought such as, “Is it really worth fighting on”, “Was it all worth it?”, “Woe is me”, you get the picture.. It has been and no doubt will continue to be a real fight to not follow this route as however much you know deep down that it is not the way to go it is so tempting to take what many will see as the easy option, if there is such a thing and just give up. But, as I’ve pointed out on a few occasions I am a stubborn bugger and will continue to fight till the end. One thing that always seems to come to mind at moments like this is that, if I was to give up now what has all the suffering and punishment I have not only put myself through but all my family and friends as well as all the professionals involved including people like “Merlin” and also one of the registrars “Hagar The Viking” who stayed at my side treating me for hours after he was meant to be off duty, then coming back in to continue on after just a few hours rest, when I was pretty much in a continual seizure for quite some hours and pretty damn close to popping my clogs for the first and sadly not the last time, to name just a very small few. They do say that if I was a cat I would have used up all my lives by now!! So you see when you add into the equation the thoughts of letting others down too and not just yourself it kind of makes you want and need to fight that bit harder. One other thing too. Although I am by know way seen as a church going Christian I quite often have this phrase floating around in my mind which I know comes from a hymn I used to hear and sing too all those times when I was dragged along to church as a child and that’s, “Fight the good fight, with all your might”. Which does ring true. See mum it was all worth it in the end.
It is quite well documented, although I guess, always quite impossible to measure the effects of positive thinking. Take for example the number of elderly people who after loosing a partner after being together for years will then pass away themselves quite soon after, having in a lot of cases been in a state of good health all their lives. Just the thought of life without their loved one combined with just giving up in reality is enough to bring this on. We all just seem to put it down to as they say “A Broken Heart”. So the power of positive thinking is not to be underestimated in my opinion.
Okay then I will leave it there for today, jeeeez I feel like a teacher or even a preacher reigning down my sermon on you all, ha ha ha!! I’ve seen a few scary examples of each over the years too let me tell you!! Enough to scare you into confessing to anything whether you did it or not.
See Ya!!
Oops has it really nearly been a week since I last inflicted my rantings on you lucky things. Think yourselves lucky as it hopefully doesn’t happen too often.
I guess a lot of my time has been taken up, trying to get my head around the changes that are happening in my life some of which as you may have gathered by now require a lot of getting around so to speak. I have been finding more and more that the old negative demons that have appeared from time to time in the past, trying their best to drag me into their pit of depression are screaming more loudly than usual and I would be a liar if I was to say I have not at least spent some time in their company. I’ve had many a thought such as, “Is it really worth fighting on”, “Was it all worth it?”, “Woe is me”, you get the picture.. It has been and no doubt will continue to be a real fight to not follow this route as however much you know deep down that it is not the way to go it is so tempting to take what many will see as the easy option, if there is such a thing and just give up. But, as I’ve pointed out on a few occasions I am a stubborn bugger and will continue to fight till the end. One thing that always seems to come to mind at moments like this is that, if I was to give up now what has all the suffering and punishment I have not only put myself through but all my family and friends as well as all the professionals involved including people like “Merlin” and also one of the registrars “Hagar The Viking” who stayed at my side treating me for hours after he was meant to be off duty, then coming back in to continue on after just a few hours rest, when I was pretty much in a continual seizure for quite some hours and pretty damn close to popping my clogs for the first and sadly not the last time, to name just a very small few. They do say that if I was a cat I would have used up all my lives by now!! So you see when you add into the equation the thoughts of letting others down too and not just yourself it kind of makes you want and need to fight that bit harder. One other thing too. Although I am by know way seen as a church going Christian I quite often have this phrase floating around in my mind which I know comes from a hymn I used to hear and sing too all those times when I was dragged along to church as a child and that’s, “Fight the good fight, with all your might”. Which does ring true. See mum it was all worth it in the end.
It is quite well documented, although I guess, always quite impossible to measure the effects of positive thinking. Take for example the number of elderly people who after loosing a partner after being together for years will then pass away themselves quite soon after, having in a lot of cases been in a state of good health all their lives. Just the thought of life without their loved one combined with just giving up in reality is enough to bring this on. We all just seem to put it down to as they say “A Broken Heart”. So the power of positive thinking is not to be underestimated in my opinion.
Okay then I will leave it there for today, jeeeez I feel like a teacher or even a preacher reigning down my sermon on you all, ha ha ha!! I’ve seen a few scary examples of each over the years too let me tell you!! Enough to scare you into confessing to anything whether you did it or not.
See Ya!!
Tuesday, June 12
The Eyes Have It!!
In the words of the Speaker Of the House in that Dream World where all the puppets go to play, the eyes very much do have it indeed. Before i drive you as insane as me i must point out what the hell I'm on about. I finally got round to attending the Eye Clinic at Heath Towers after months and months of waiting and countless appointments being canceled by them, not me i must add. The original reason for the appointment was to investigate an apparent infection i had at the time which obviously has long gone since. In fact i have probably had 2 or 3 since then but as my eyes are still pretty bad at the moment it is a bit needed. It didn't start off too well. I was shown into a room to check my eyesight and placed in front of this kind of mirror, reflecting a series of letters which i guess a lot of you will have experienced before. Well, after placing this kind of cover over my left eye she asked me to read out the letters. I was looking and looking for them but said that i couldn't see any at all which was true. She looked rather confused and alarmed and after a little maneuvering of the mirror the penny dropped and i realized that she wanted me to read out the letters being reflected in the mirror and that they were not in fact printed on the back of this cover she had put over my eye. Ha Ha Ha!!! What a plonker!! In to see the Registrar then. He set about poking and prodding around in both eyes before giving me his expert opinion. He has said that i actually have Graft Versus Host Disease of the eyes, something i never knew you could actually get. It results in you getting large areas of dry dead skin on the surface of your eyes causing all sorts of irritation. On the plus side at least i don't have an infection, but the downside is that i have to put in Lubricating drops every hour to keep them moisturized. This may reduce a little in time as the lubricant will build up some sort of layer but even then i will probably end up needing it about 4 times a day and for life sadly as it is a permanent thing. So just when i thought i didn't have anything else left for this lurgy to attack yet again i was proven wrong. The pain has eased a little thankfully but i just have to put up with everything being sort of blurry for about 20 minutes every hour which is fun whilst it breaks down a little. I must just add a note on the usual hassle involved with such an outing as this and thats the amount of bloody waiting around involved. The actual time spent in the company of the doctors or nurses and then on to the pharmacy was maybe around 25 minute yet i was up there along with my p.a for about 4 ½ hours. Very frustrating in the least.
I had a great day today again at the New Horizons Day Centre or as the beloved daughter calls it “Day Care”, cheeky git!! i haven't said a lot about them yet i know but they won't escape the blog for too much longer I'm sure. They're a lovely bunch and so friendly and talkative too, which all helps to make you feel settled, and the foods nice too. I think i will begin to make my mark soon in corrupting their minds with all the drivel I've inflicted on all of you for so long long now, i think they may be about ready now for some hard core Jonny5 Ranting!!! Wish them luck poor souls!!!
Okay more eye drops needed as i cant see the blinking screen anymore.
See Ya!!
p.s HIYA LOUISE If YOUR READING THIS!!!!!
Thursday, June 7
A Change Of Direction!!
I've come to the realization over the last few days that i have appeared to have turned a corner on the windy road I've been following all these years and a pretty sharp one at that too. It has been blatantly obvious not just to me but family and friends that things like my breathing is getting worse and i don't seem to going be out as much. It was after all, only a matter of maybe 3 or weeks ago that i was able to make it out the kitchen in one piece, most of the time anyhow, whereas now if i attempt it at all it takes me ages and i have to stop a few times to catch my breath before finally arriving in such a state that i am useless. It's almost as if my security blanket has been taken away from me or say, my dummy because for so long it seems like i have been treading water. Everything that seemed to come up as in changes in my health etc i had experiences to some degree previously so i sort of knew what to expect, whereas now this really is uncharted territory and i suddenly feel quite lost at times. I'm the sort of person who wants to know what to expect i guess and as you will probably have read throughout this blog have struggled like a lot of people i guess with the feelings of say, giving up more independence, being a burden etc etc.. so when you get down to the last few bit of independence you have left they suddenly become extremely precious, and you tend to fight even more passionately to keep hold of them, but in doing so i think you actually make things harder for yourself in the long run as far as dealing with the emotional side of things is concerned. In saying that though, how many times have you heard that someone who had been fighting to stay alive gave up in the end and they died very quickly afterwards, implying that if you fight you can prolong things which i do believe is true to certain degree. So yet again h'm placed in blinking no win situation.
In saying all this though i seem to be coping with things fairly well and h'm even trying to think that bit further ahead to when i will be permanently reliant on some sort of wheeled contraption to get me round the house etc yet it seems i can't think past that to when, heaven forbid, i could end up being bed bound as i think at the moment that thought is very much of loosing all independence completely and IT'S SCARY!!!!!
Also a whole new world has been opened up to me, that of the Palliative Care side of things. I have obviously had some dealings with some of the services around as they do tend to overlap somewhat but the last 2 weeks or so it has been much more prevalent. In order to give Judith some respite and also enable her to carry on as a Civilian Instructor for the Air Cadets a few evenings a week i have been having a Marie Curie Nurse coming to sit with me for around 4 hours or so of an evening. When it was originally discussed we were looking to maybe have 2 evenings a week but it has worked out a bit different than that as they have been here every evening except Sunday. It's a sort of sitting service i guess and i have been very lucky in that the women that have been have all been lively, chatty and easy to get on with. I have also managed to book a short spell of respite care in the summer for a break away. I have been told that i should be able to get up to about 4 weeks a year respite which will help considerably i reckon for all concerned. It is something i had not even considered before in fact i never even knew that this sort of thing was available and to be honest just the thought of it would not have appealed to me at all, whereas i am really looking forward to it now.
Sadly the main hurdle to my keeping my independence as long as i can and to a big degree is having an effect on my physical condition worsening let alone the mental pressure is that of the works to be done around the house such as the Bedroom / Bathroom extension along with the Kitchen alterations and the Ramp etc etc etc all of which are hopefully going to be done under the DFG IF???? the local council ever pull their finger out and actually get on with doing something about it. But i really don't hold out much hope of ever even getting to the top of the so called priority one waiting list that h'm on let alone them actually doing the work. I've got more luck in winning the London Marathon.
Right time for some grub. Take it easy.
See Ya!!
Friday, June 1
Look And Learn Mr Smith MP!!
I had a visit yesterday from Local Councillor John Thomas and Ken Evans (Officer For Highways) from the Local Council, to view the situation regarding the lack of sloped curbs around the area. As some of you may have read a while back, John Thomas had already visited and indeed came for a drive around the area to see first hand what I meant and did say at the time that he would get in touch with them to try and sort this out. Well, bearing in mind my experience recently dealing with MP’s and Councillors has not exactly been an enjoyable one, in fact it has been very tedious and pretty much a complete waste of time, I was not putting much faith in him actually being able to do anything, that is if he could be bothered to try in the first place. How wrong could I be??? I will explain why now. He has replied to every single email sent and promptly too. He has made contact with various people he said he would to sort It out. He has actually been to see me personally to try and get an accurate picture etc etc which sadly NOT ONE of the, dare I say it, HIGHLY PAID MP’s has done. Okay back to the visit. We had decided that at least to start with, it may be an idea to have a look at the places where a sloped curb will make the most difference for me in particular as after all we all know it comes down to funds being available or not to actually do the work. The first area we got to in a couple of minutes was I thought going to be a tricky one as the pavement on one side of the road had not been adopted by the council and therefore was not their responsibility. Well blow me!! After a quick look the response from Mr Evans was, “No Problem. We will have that done within the month”. I couldn’t believe it. No having to fight or anything, just a straightforward no problem. Well we carried on to another couple of areas which again would be very much needed to be sloped in order to allow me and others of course to get off the estate all of which came with the same reply. In all 3 areas are to be sloped consisting on 5 slopes, I know this seems weird as there should be 6 but for some strange reason a slope was put in earlier on one side of the road but not on the other. A ploy I recon to get you out on to the road so they can run you over. Ha has also agreed to come up with a long term plan to slope all the curbs into the village, therefore making it accessible to people, which I guess will involve about 20 odd slopes and even I don’t expect that to happen overnight, at least he is aware of the problems and is willing to try and address them, which is a refreshing change after all the negativity of late.
So may I take this opportunity to THANK YOU, Councillor Thomas for at least partially restoring my faith in the Political / Local Government system.
I really must learn to bloody sit still. My chest has been fine this morning up till now, until I decided to go to the toilet a marathon of some 6 steps or so. By the time I got there I was a blubbering wreck, struggling for breath again and then I had to eventually return which made things just that much worse. After about 30 mins or so when I eventually regained enough composure to be recognised as one of the Homo Sapien species I’m left with a rattle snake chest from hell Argggggggggggggg!!!!!!!!!!!!
See Ya!!
I had a visit yesterday from Local Councillor John Thomas and Ken Evans (Officer For Highways) from the Local Council, to view the situation regarding the lack of sloped curbs around the area. As some of you may have read a while back, John Thomas had already visited and indeed came for a drive around the area to see first hand what I meant and did say at the time that he would get in touch with them to try and sort this out. Well, bearing in mind my experience recently dealing with MP’s and Councillors has not exactly been an enjoyable one, in fact it has been very tedious and pretty much a complete waste of time, I was not putting much faith in him actually being able to do anything, that is if he could be bothered to try in the first place. How wrong could I be??? I will explain why now. He has replied to every single email sent and promptly too. He has made contact with various people he said he would to sort It out. He has actually been to see me personally to try and get an accurate picture etc etc which sadly NOT ONE of the, dare I say it, HIGHLY PAID MP’s has done. Okay back to the visit. We had decided that at least to start with, it may be an idea to have a look at the places where a sloped curb will make the most difference for me in particular as after all we all know it comes down to funds being available or not to actually do the work. The first area we got to in a couple of minutes was I thought going to be a tricky one as the pavement on one side of the road had not been adopted by the council and therefore was not their responsibility. Well blow me!! After a quick look the response from Mr Evans was, “No Problem. We will have that done within the month”. I couldn’t believe it. No having to fight or anything, just a straightforward no problem. Well we carried on to another couple of areas which again would be very much needed to be sloped in order to allow me and others of course to get off the estate all of which came with the same reply. In all 3 areas are to be sloped consisting on 5 slopes, I know this seems weird as there should be 6 but for some strange reason a slope was put in earlier on one side of the road but not on the other. A ploy I recon to get you out on to the road so they can run you over. Ha has also agreed to come up with a long term plan to slope all the curbs into the village, therefore making it accessible to people, which I guess will involve about 20 odd slopes and even I don’t expect that to happen overnight, at least he is aware of the problems and is willing to try and address them, which is a refreshing change after all the negativity of late.
So may I take this opportunity to THANK YOU, Councillor Thomas for at least partially restoring my faith in the Political / Local Government system.
I really must learn to bloody sit still. My chest has been fine this morning up till now, until I decided to go to the toilet a marathon of some 6 steps or so. By the time I got there I was a blubbering wreck, struggling for breath again and then I had to eventually return which made things just that much worse. After about 30 mins or so when I eventually regained enough composure to be recognised as one of the Homo Sapien species I’m left with a rattle snake chest from hell Argggggggggggggg!!!!!!!!!!!!
See Ya!!
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