Well I must say after all the recent event full days it was a welcome break to have nothing to really talk about today, never mind whinge and moan about.
About the only 3 things of any significance were that when the doctor came around to see her favourite patient, well I like to think she thinks of me like that although I doubt this is anywhere near the mark, she mentioned 2 things. The first being that my Cyclosporine levels were back to where they would expect them to be, in fact probably slightly more than they would like. So they have reduced the dosage which although is not much just 110mg from 125mg, it is a reduction and heading back away from the Sick Zone as I like to think of it. The second was to say that she was a bit concerned that my blood salts were a little low too. They are usually affected by taking things like Diuretic tablets etc. She said that as I have I have been off these a few days now my levels should have started to normalise. I can see one pretty big flaw I this and that is, I have been taking these tablets every day as no one told me they were to be stopped. That might explain why then. This is a problem that could have happened at any time I guess as I always Self Medicate when I come into Heath Towers. Some of the nurses come in and go through the drug chart with me although a lot just come in and ask if I have taken them all and I just say yes and that’s it. Apart from this the doctor explained that they were still trying to contact the Respiratory team at Llandough. As I found out by looking at my calendar this morning I am actually due to go and see Dr Gelder at the clinic over there on Thursday this week. What it looks like is going to happen is that I will try and get Judith to come in and take me over there and bring me back which will at least save me having to wait around for the efficient hospital transport and then it looks like it going home on Friday might be on the cards although as all the hassle I have had in the past I never bank on going home on a particular day or time etc as anything can happen between now and then.
Okay then. The third thing was that the physio came and subjected me to some mass lung abuse in the form of another marathon walking session and so close after the last time too, she really has a nasty streak in her. I must add a little note saying that it was, in fact my idea ha ha ha!! I managed to walk around the same distances as last time but also the first section from the bed out of the room to the corner I repeated on the return trip and not wheeled back as I was last time. It felt a bit like, well you know when you got married and carried your darling new blushing bride or in the case of women were swept of your feet and carried over the threshold. Alas in my case Judith carried me over the threshold ha ha ha!! Well it was nothing like that.!! I felt just as breathless doing it and also really knackered and in some pain from the muscles that were trying to plead with me to stop torturing them afterwards. The physio though did point out the fact that my recovery rate was a lot better as in I managed to return my breathing rate back to a normal state in less time than the last and that I have managed to walk a little further this time which are both positive moves. See there may yet be some hope for me after all. I have tried to explain to them that there are a couple of things that I want to be able to do in some ways before I go back home. Well these are the major ones anyhow. They are, that I want to be able to walk comfortably around the house, all be it downstairs as I need to be realistic, and not expect to manage to get up the stairs quite yet although I have every intention of doing so at some time in the future. This opens up a few options for me although the main one is to get cooking again which I love. The second aim is to be able to walk to the car without collapsing half way because of lack of breath and exhaustion.
Things are heading in the right general direction although I know that this improvement will not be an overnight thing I guess I have to make do with small gains.
There might be some sign of me going home maybe on Friday. They want me to be seen by the chest team and as it happens I have an appointment booked with them on Thursday, isn’t that convenient? Providing he gives the all clear or not will either mean go home, stay in Heath Towers for a while longer or even a fate worse than death and that’s a stay at Llandough Hospital. I’m rather hoping that he will let me go home and just try the community physio approach and exercises I do myself and after one more night at Heath Towers I will heading off back home for some well deserved rest AND DECSENT FOOD!!!! On Friday. This is the likely approach as he does seem to want to much to do with me and this way he doesn’t have to.
After saying I had nothing to write about it still blinking turns out to be a couple of pages long ha ha!!!
I’m Off See Ya!!
Tuesday, October 31
Monday, October 30
They Spoilt It!!
Morning peeps. I think you will be pleased to know that today’s blog may well be a short one as my Pic line is playing up, so they have put the drip through a pump which stops, causing an alarm to go off every time I bend my arm, so I am typing with one finger.
I’m in two minds as to what to write as it was both good and bad today. Well I’ll try and give both sides. Nothing, that is apart from the Heath Towers Express, happened in the morning so most of it was spent just watching the telly and snoozing.
Then lunch time the slop stirrer knocked on the door, “what do you want for Dinner”, she asked. I so wanted to say “Something edible might make a change”, but I was very polite and just asked what delights were available. After the endless list of about 5 things I decided on Roast Lamb, lots of Roast Parsnips, Green Beans and Gravy. I just love roast parsnips and would be happy with a plate full of them with gravy. She came back with this huge piled up plate full of exactly what I had asked for which is a change and it looked gorgeous too. Well bugger me it was outstanding. Lamb simply falling apart, parsnips perfectly roasted beans just cooked and not overly as usual. Even the gravy was twice as thick as the usual slop they serve up and tasty too. Well you see, it can be done right so why is it so hard for others to do the same?? I fell into my afternoon snooze with a feeling of hope for the future and a huge belly from all that food.
Well apart from being woken by the doctor It was pretty much an afternoon of chilling.
All of a sudden a head poked around the door and asked “what do you want for supper”. After being given the list which usually is 3 items plus Veg and Spuds etc one of which is always Boiled Ham, although what they mean by boiled ham is slaughter house floor sweepings. You know the stuff all nice and pink and shaped round and sold in packets of 6 or 8 and tastes of, well nothing at all really. I opted for the Beef Lasagne. Just that, nothing else. No chips because they are so dry and no mashed potatoes and gravy of all things. They actually served that to me last week. Lasagne, Green Beans, Mash and Beef Gravy. Not a combination made in heaven I think. Well it arrived and again a double portion of Beef Lasagne and nothing else. Well bugger me again. They will have to stop this as that’s 2 bugger me’s in one day, that’s not healthy. It was simply delicious. Again very well cooked.
So all in all the food was outstanding today, apart from the toast in the morning which was cold and limp but that’s a permanent problem and one I usually can overcome by asking one of the nurses later in the morning for some, which is not ideal I know. It gives me hope for the future that it can be done.
Well that was that.
Ohhhhhh Noooooo!!!!!!!!!!!
I waited and waited for my evening cuppa to arrive and also for my dirty dishes from supper too to be taken away. Finally I rang the buzzer to see if they could tell me if she had been around. “Yes” they said, “they came around ages ago”. Well the buggers never came in her to ask me. See, they just had to go and spoil what was going to be an amazing day and blog too for that matter. Now because of that, simply missing out a cuppa has changed it into yet another day when the slop stirrers have wound me up. Why can’t they just complete a bloody simple task?? All this too when I know they have been warned by the supervisor to buck up.
This sort of service is just not acceptable. Penelope popped her head around the door this morning to ask how things were over the weekend and when I told her she was not a happy bunny. She is going to ask the Supervisor to come and speak to me later. It was quite funny because as she was standing chatting to me Mary, (one of the 5 spice girls) popped her head in asking if I had been given fresh water this morning, which I hadn’t so today has already started off on the wrong foot.
Right then I better go take my drugs or else I’ll die. Mmmmm that’s an interesting subject for a future blog, DRUGS vs DEATH.
See I told you it was only going to be a short one today. And I lied Ha Ha!!!
See Ya!!
I’m in two minds as to what to write as it was both good and bad today. Well I’ll try and give both sides. Nothing, that is apart from the Heath Towers Express, happened in the morning so most of it was spent just watching the telly and snoozing.
Then lunch time the slop stirrer knocked on the door, “what do you want for Dinner”, she asked. I so wanted to say “Something edible might make a change”, but I was very polite and just asked what delights were available. After the endless list of about 5 things I decided on Roast Lamb, lots of Roast Parsnips, Green Beans and Gravy. I just love roast parsnips and would be happy with a plate full of them with gravy. She came back with this huge piled up plate full of exactly what I had asked for which is a change and it looked gorgeous too. Well bugger me it was outstanding. Lamb simply falling apart, parsnips perfectly roasted beans just cooked and not overly as usual. Even the gravy was twice as thick as the usual slop they serve up and tasty too. Well you see, it can be done right so why is it so hard for others to do the same?? I fell into my afternoon snooze with a feeling of hope for the future and a huge belly from all that food.
Well apart from being woken by the doctor It was pretty much an afternoon of chilling.
All of a sudden a head poked around the door and asked “what do you want for supper”. After being given the list which usually is 3 items plus Veg and Spuds etc one of which is always Boiled Ham, although what they mean by boiled ham is slaughter house floor sweepings. You know the stuff all nice and pink and shaped round and sold in packets of 6 or 8 and tastes of, well nothing at all really. I opted for the Beef Lasagne. Just that, nothing else. No chips because they are so dry and no mashed potatoes and gravy of all things. They actually served that to me last week. Lasagne, Green Beans, Mash and Beef Gravy. Not a combination made in heaven I think. Well it arrived and again a double portion of Beef Lasagne and nothing else. Well bugger me again. They will have to stop this as that’s 2 bugger me’s in one day, that’s not healthy. It was simply delicious. Again very well cooked.
So all in all the food was outstanding today, apart from the toast in the morning which was cold and limp but that’s a permanent problem and one I usually can overcome by asking one of the nurses later in the morning for some, which is not ideal I know. It gives me hope for the future that it can be done.
Well that was that.
Ohhhhhh Noooooo!!!!!!!!!!!
I waited and waited for my evening cuppa to arrive and also for my dirty dishes from supper too to be taken away. Finally I rang the buzzer to see if they could tell me if she had been around. “Yes” they said, “they came around ages ago”. Well the buggers never came in her to ask me. See, they just had to go and spoil what was going to be an amazing day and blog too for that matter. Now because of that, simply missing out a cuppa has changed it into yet another day when the slop stirrers have wound me up. Why can’t they just complete a bloody simple task?? All this too when I know they have been warned by the supervisor to buck up.
This sort of service is just not acceptable. Penelope popped her head around the door this morning to ask how things were over the weekend and when I told her she was not a happy bunny. She is going to ask the Supervisor to come and speak to me later. It was quite funny because as she was standing chatting to me Mary, (one of the 5 spice girls) popped her head in asking if I had been given fresh water this morning, which I hadn’t so today has already started off on the wrong foot.
Right then I better go take my drugs or else I’ll die. Mmmmm that’s an interesting subject for a future blog, DRUGS vs DEATH.
See I told you it was only going to be a short one today. And I lied Ha Ha!!!
See Ya!!
Sunday, October 29
The Day After!!
Well I have to say that after all that has happened of late yesterday was a non event really. Generally just chilling out because as you know this place stupidly grinds to a halt on the weekend so there is a distinct lack of Doctor Participation. It is believed that the last sighting of these strange life forms was around 1979 but it also appeared the person responsible for the sighting was taking rather large doses of Morphine at the time which might have compromised her vision.
After the previous nights lack of sleep I was tired all day as you can imagine and in some ways was glad of the longer spells of being left alone. I also felt generally sickly and by far off my food too, just as well I suppose, at least I don’t have to try and force down their swill. I was a bit cheesed off though as I had arranged for my mother to fetch in some Liver, Bacon with gravy etc but sadly I had to text her and tell her not to bother as it would be a waste with me feeling like this. Her and my dad turned up later on in the afternoon and she hadn’t got the text so they were armed with a nice hot food flask for me. She explained that it was supposed to keep things warm for up to 8 hours so I decided to keep hold of it and maybe bit by bit I would at least have some of it during the rest of the day. Judith turned before them too with the obligatory arm full of carrier bags of goodies of all descriptions. She generally has to go to Tesco’s everyday to fulfil my requirements so to speak with, to be honest, food stuff which I really shouldn’t need if they supplied me as they are supposed to with good nutritious food here.
I had stopped with the doctors consent for a change ha ha ha the Nebuliser that I was taking twice a day, just to see if it was that that was causing some of the wheezyness and I thought it might have been because my chest had settled a lot by mid morning and was no longer wheezy. It more or less continued like this till probably around 7pm when the rattle re appeared and the coughing started with vengeance. Why is it that it always seems to get worse of an evening no matter what I do to avoid it?? Sadly that was to stay for a number of hours, but in saying that the last time I can remember looking at the watch the time was 1am and the next time was at about 7am which is bloody good for me at the moment. Laura came in this morning to nick some of my precious Red Gold and put up the first dose of today’s poison.
They have changed the dosage to 125mg twice a day of cyclosporine and as some of you early readers might remember the hassle I had with trying to get adequate anti sickness cover in cover. Even when they had eventually sorted that out there seemed to be a certain dosage level that really made me feel dreadful. I used to feel sick and giddy and it’s hard to explain exactly but I tend to try and explain it as a feeling of being filled with toxic nastiness, not at all pleasant believe me. It was somewhere between 100 and 150mg’s so I remember. Up until now I have only had this feeling a couple of times when it was just once a day now it is twice a day I have had a few occasions of these feeling and there in lies a problem. You see without the cyclosporine I would be having no treatment at all now the PUVA or should I say Skin Burning treatment has stopped completely. You know I am still suffering from lots of, well ulcers they are now but they started off as blisters that subsequently burst and then got infected from when they burnt my skin all those many months ago now. They have started to cover them up and put on these iodine based patches which seem to be doing the trick. The intention was in the beginning to treat the GVHD with both PUVA and eventually 250mg of Cyclosporine which I knew would probably cause problems with sickness etc but thought we would cross that bridge when we get there. The fact the I am having problems already at half that dosage and no PUVA would indicate that a change of tactics is required. Again throwing up more problems. What next? Etc etc. I know a lot of approaches have been discussed along the way between the team but they have always had other problems such as the infections and breathing problems to try and sort out first and the GVHD has sort of moved further down the list of things to do. A bit like when you get put on hold only to be told, “you are 28th in the queue, please hold” and after the usual dreadful attempt at Greensleaves or some other obscure tune your forced to listen too the voice comes back and says “you are 30th in the queue, please hold we do value your custom” Grrrrrrrrrrrrr!!!!!!!!!!!! If you valued my opinion you would employ more people in the call centre to deal with problems. Oh and while your at it get in the engineer cos your queue goes backwards not forwards.
I’ve had a few down days of late which happens sadly. Usually I deal with them quite well and as you know I do have a wonderful councillor Sarah who helps me through these times. I can find at times in here though that it can take a bit longer to get through it. I am surrounded by some lovely people who really do care and are only too willing to sit and chat and cheer me up etc but the same old not wanting to be a burden and stuff stops me from asking a lot of times. The last few days were made a lot more positive because of a few people like Sally, Laura, Nutter Rachael, lorraine, yolanda and Penelope Pitstop of course, just because they have gone out of their way to spend some of their busy time to speak to me and help me get through it. I really do appreciate it. On the other hand I suppose there are also some people that just added to the problems in some way although a lot of it could have been made easier if the actual service etc was run better for example buying in food that was at least intended to be consumed by humans and not livestock for one.
Ah well dinner has just arrived so I better go and get stuck into a plateful of Roast Lamb, Roast Parsnips, Green Beans and what looks like lovely thick Gravy and Mint Sauce of course. No spuds as they arealways inedible.
So wish me luck!!
See Ya!!
p.s if the first mouthful is anything to go by this could well be the best meal I have ever ever had in here………
After the previous nights lack of sleep I was tired all day as you can imagine and in some ways was glad of the longer spells of being left alone. I also felt generally sickly and by far off my food too, just as well I suppose, at least I don’t have to try and force down their swill. I was a bit cheesed off though as I had arranged for my mother to fetch in some Liver, Bacon with gravy etc but sadly I had to text her and tell her not to bother as it would be a waste with me feeling like this. Her and my dad turned up later on in the afternoon and she hadn’t got the text so they were armed with a nice hot food flask for me. She explained that it was supposed to keep things warm for up to 8 hours so I decided to keep hold of it and maybe bit by bit I would at least have some of it during the rest of the day. Judith turned before them too with the obligatory arm full of carrier bags of goodies of all descriptions. She generally has to go to Tesco’s everyday to fulfil my requirements so to speak with, to be honest, food stuff which I really shouldn’t need if they supplied me as they are supposed to with good nutritious food here.
I had stopped with the doctors consent for a change ha ha ha the Nebuliser that I was taking twice a day, just to see if it was that that was causing some of the wheezyness and I thought it might have been because my chest had settled a lot by mid morning and was no longer wheezy. It more or less continued like this till probably around 7pm when the rattle re appeared and the coughing started with vengeance. Why is it that it always seems to get worse of an evening no matter what I do to avoid it?? Sadly that was to stay for a number of hours, but in saying that the last time I can remember looking at the watch the time was 1am and the next time was at about 7am which is bloody good for me at the moment. Laura came in this morning to nick some of my precious Red Gold and put up the first dose of today’s poison.
They have changed the dosage to 125mg twice a day of cyclosporine and as some of you early readers might remember the hassle I had with trying to get adequate anti sickness cover in cover. Even when they had eventually sorted that out there seemed to be a certain dosage level that really made me feel dreadful. I used to feel sick and giddy and it’s hard to explain exactly but I tend to try and explain it as a feeling of being filled with toxic nastiness, not at all pleasant believe me. It was somewhere between 100 and 150mg’s so I remember. Up until now I have only had this feeling a couple of times when it was just once a day now it is twice a day I have had a few occasions of these feeling and there in lies a problem. You see without the cyclosporine I would be having no treatment at all now the PUVA or should I say Skin Burning treatment has stopped completely. You know I am still suffering from lots of, well ulcers they are now but they started off as blisters that subsequently burst and then got infected from when they burnt my skin all those many months ago now. They have started to cover them up and put on these iodine based patches which seem to be doing the trick. The intention was in the beginning to treat the GVHD with both PUVA and eventually 250mg of Cyclosporine which I knew would probably cause problems with sickness etc but thought we would cross that bridge when we get there. The fact the I am having problems already at half that dosage and no PUVA would indicate that a change of tactics is required. Again throwing up more problems. What next? Etc etc. I know a lot of approaches have been discussed along the way between the team but they have always had other problems such as the infections and breathing problems to try and sort out first and the GVHD has sort of moved further down the list of things to do. A bit like when you get put on hold only to be told, “you are 28th in the queue, please hold” and after the usual dreadful attempt at Greensleaves or some other obscure tune your forced to listen too the voice comes back and says “you are 30th in the queue, please hold we do value your custom” Grrrrrrrrrrrrr!!!!!!!!!!!! If you valued my opinion you would employ more people in the call centre to deal with problems. Oh and while your at it get in the engineer cos your queue goes backwards not forwards.
I’ve had a few down days of late which happens sadly. Usually I deal with them quite well and as you know I do have a wonderful councillor Sarah who helps me through these times. I can find at times in here though that it can take a bit longer to get through it. I am surrounded by some lovely people who really do care and are only too willing to sit and chat and cheer me up etc but the same old not wanting to be a burden and stuff stops me from asking a lot of times. The last few days were made a lot more positive because of a few people like Sally, Laura, Nutter Rachael, lorraine, yolanda and Penelope Pitstop of course, just because they have gone out of their way to spend some of their busy time to speak to me and help me get through it. I really do appreciate it. On the other hand I suppose there are also some people that just added to the problems in some way although a lot of it could have been made easier if the actual service etc was run better for example buying in food that was at least intended to be consumed by humans and not livestock for one.
Ah well dinner has just arrived so I better go and get stuck into a plateful of Roast Lamb, Roast Parsnips, Green Beans and what looks like lovely thick Gravy and Mint Sauce of course. No spuds as they arealways inedible.
So wish me luck!!
See Ya!!
p.s if the first mouthful is anything to go by this could well be the best meal I have ever ever had in here………
Saturday, October 28
down down
Well what a day this has turned out to be. Really a case of ups and downs.
As usual I was up with the milkman and subjected to the usual abuse which is commonly known as the Heath Towers Express. Al started out quite well apart from being a bit tired which is not surprising due to my lack of sleep, I felt fairly good. My wheezyness had all but gone which is a good sign and was looking forward to day of nothing much really.
The nurse had mentioned that the doctors had wanted me to start to taking my Cyclosporine via IV and not as I have been orally. They had talked about my Cyclosporine levels in my blood being a bit on the low side yesterday when the Doctors came a visiting but had said nothing about changing to IV. They seem to think that my chosen flavour of drink I use might be causing the low readings and had asked me to try and stop it for a couple of days just to see. Although I was a bit gutted as I really do like this drink which is a Tesco’s version of Red Bull I would give it a go. There is a thing with grapefruit that really effects it I know and the labelling is a bit vague as to whether there is some or not in it as well as the amount of caffeine and taurine probably does help either. Well after taking a level this morning it appears that the level is on the way up which indicates that the drink was the culprit after all. They will leave me on oral medication for now and see how it goes. I’m not sure whether it was just the count that was the problem and also whether the Cyclosporine’s actual effectiveness was affected meaning it wasn’t doing its job.
I had a visit from Fav Cous Jacky and Jessica too which was a welcome surprise. She came bearing gifts too in the form of a nice Coffee Latte from the concourse which was truly delicious. We had a good old whinge about the Heath Service etc etc as she has sadly like myself had a lot to do with them due to various Illnesses and conditions etc. it seems like every time I see Jessica she is about 5 years older. She’s a young lady now. God where has my life gone???????????? Shortly afterwards it was Judith’s turn and she brought in Tara and Luke (Her Boyfriend) only because they wanted a lift into Cardiff Town Centre though!!! She came bearing more gifts too in the form of lovely fresh prawns with seafood sauce and some replenishments in the grape and nuts department.
I had forgotten to be honest with you to take my Celestin Nebuliser in the morning so I decided when Judith had gone I would take it then. Everything was fine for a short while then the unmistakable noise of a distant rattle could be heard. It started off real slowly. But within about 2 hours I was auditioning for Cough Of The Year and would have won hands down. I was thinking to myself that I hope this doesn’t last nut I am not that lucky. It’s now 3.05am and I am sat up writing this still coughing badly so much that it hurts all my body due to the physical straining ect. I have tried everything to stop it. Heavy Breathing exercises laying/sitting in various positions, cough medications, hot drinks, cold drinks, drugs etc etc all with no success. As usual all this coughing is making me feel sicky again which I absolutely hate. It has got me down again and as usual once my chest gets worse along come all the negative thought’s and I tend to fall apart at the seems. I have been having a good old chat with the lovely Laura and the equally lovely if not Gobby pocket rocket, Rachel. We were generally chatting about like as we know it and they have done a great job of cheering me up and convincing me I can get through this etc etc. They really have helped a lot over the last few days and I am extremely grateful for this. I know that I have a lot of people like these lovely Florence nightingales rooting for me and willing to help me in every way they can and they all just seem to help without me even saying anything although I know I have to start to ask when I do need things. This is something as I have mentioned lots and lots of timed on here that I have always found hard to do. It’s like a feeling of admitting I have become less independent which I also know is bloody stupid.
I hope to be able to start to do something about it as the way I have been as in speaking out about problems whilst I have been in here this time and seeing the results of actually doing this maybe has been a good start at least. I just have to keep it up now.
I thought I would just say a quick hiya to the equally delicious and delectable Lorraine who was looking after me this morning and for the wonderful service she gave as per usual. I especially liked the touch of bringing into the room 4 masks for the student doctors and the registrar when they came in. I totally agree with her as the doctors never wear them at all apart from very occasionally Merlin does. Good on you girl I thought. She is a star!! I would like to say hello to the nurse who looked after me this afternoon but I actually saw her twice. First time was after she had been on duty about 3 hours to say hi then about 3.5 hours later to give me a tablet and as she is either new or a bank nurse etc I couldn’t tell you her name or what she looked like as at least she was wearing a mask so I couldn’t see her face at all.
I tell you one thing I hadn’t realised before the last few weeks of punishment and that’s how much I have began to rely a lot on lip reading to supplement my hearing loss as well as the hearing aids. With all the faces covered up it can be very hard to understand what people are saying. I tend to not wear the hearing aids much in here as the noise from the 2 phones right outside my door is deafening with them on.
Right that’s enough of that for one day see you all tomorrow.
See Ya!!
As usual I was up with the milkman and subjected to the usual abuse which is commonly known as the Heath Towers Express. Al started out quite well apart from being a bit tired which is not surprising due to my lack of sleep, I felt fairly good. My wheezyness had all but gone which is a good sign and was looking forward to day of nothing much really.
The nurse had mentioned that the doctors had wanted me to start to taking my Cyclosporine via IV and not as I have been orally. They had talked about my Cyclosporine levels in my blood being a bit on the low side yesterday when the Doctors came a visiting but had said nothing about changing to IV. They seem to think that my chosen flavour of drink I use might be causing the low readings and had asked me to try and stop it for a couple of days just to see. Although I was a bit gutted as I really do like this drink which is a Tesco’s version of Red Bull I would give it a go. There is a thing with grapefruit that really effects it I know and the labelling is a bit vague as to whether there is some or not in it as well as the amount of caffeine and taurine probably does help either. Well after taking a level this morning it appears that the level is on the way up which indicates that the drink was the culprit after all. They will leave me on oral medication for now and see how it goes. I’m not sure whether it was just the count that was the problem and also whether the Cyclosporine’s actual effectiveness was affected meaning it wasn’t doing its job.
I had a visit from Fav Cous Jacky and Jessica too which was a welcome surprise. She came bearing gifts too in the form of a nice Coffee Latte from the concourse which was truly delicious. We had a good old whinge about the Heath Service etc etc as she has sadly like myself had a lot to do with them due to various Illnesses and conditions etc. it seems like every time I see Jessica she is about 5 years older. She’s a young lady now. God where has my life gone???????????? Shortly afterwards it was Judith’s turn and she brought in Tara and Luke (Her Boyfriend) only because they wanted a lift into Cardiff Town Centre though!!! She came bearing more gifts too in the form of lovely fresh prawns with seafood sauce and some replenishments in the grape and nuts department.
I had forgotten to be honest with you to take my Celestin Nebuliser in the morning so I decided when Judith had gone I would take it then. Everything was fine for a short while then the unmistakable noise of a distant rattle could be heard. It started off real slowly. But within about 2 hours I was auditioning for Cough Of The Year and would have won hands down. I was thinking to myself that I hope this doesn’t last nut I am not that lucky. It’s now 3.05am and I am sat up writing this still coughing badly so much that it hurts all my body due to the physical straining ect. I have tried everything to stop it. Heavy Breathing exercises laying/sitting in various positions, cough medications, hot drinks, cold drinks, drugs etc etc all with no success. As usual all this coughing is making me feel sicky again which I absolutely hate. It has got me down again and as usual once my chest gets worse along come all the negative thought’s and I tend to fall apart at the seems. I have been having a good old chat with the lovely Laura and the equally lovely if not Gobby pocket rocket, Rachel. We were generally chatting about like as we know it and they have done a great job of cheering me up and convincing me I can get through this etc etc. They really have helped a lot over the last few days and I am extremely grateful for this. I know that I have a lot of people like these lovely Florence nightingales rooting for me and willing to help me in every way they can and they all just seem to help without me even saying anything although I know I have to start to ask when I do need things. This is something as I have mentioned lots and lots of timed on here that I have always found hard to do. It’s like a feeling of admitting I have become less independent which I also know is bloody stupid.
I hope to be able to start to do something about it as the way I have been as in speaking out about problems whilst I have been in here this time and seeing the results of actually doing this maybe has been a good start at least. I just have to keep it up now.
I thought I would just say a quick hiya to the equally delicious and delectable Lorraine who was looking after me this morning and for the wonderful service she gave as per usual. I especially liked the touch of bringing into the room 4 masks for the student doctors and the registrar when they came in. I totally agree with her as the doctors never wear them at all apart from very occasionally Merlin does. Good on you girl I thought. She is a star!! I would like to say hello to the nurse who looked after me this afternoon but I actually saw her twice. First time was after she had been on duty about 3 hours to say hi then about 3.5 hours later to give me a tablet and as she is either new or a bank nurse etc I couldn’t tell you her name or what she looked like as at least she was wearing a mask so I couldn’t see her face at all.
I tell you one thing I hadn’t realised before the last few weeks of punishment and that’s how much I have began to rely a lot on lip reading to supplement my hearing loss as well as the hearing aids. With all the faces covered up it can be very hard to understand what people are saying. I tend to not wear the hearing aids much in here as the noise from the 2 phones right outside my door is deafening with them on.
Right that’s enough of that for one day see you all tomorrow.
See Ya!!
think first
I guess it pays to get your facts right as even I am guilty at times of just flying off the handle at things and situations etc which are usually passed on to me third hand. This was one of them….
As you all know the problems I’ve had in the dietary department since being in Heath Towers this time and I was, because I was so enraged last night , going to write yet another condemning blog today about the inedible slop they serve up here and this time it was cocked fresh for me and brought straight from the oven to me, no sitting around on the trolley for ages.
I had discussed what was available for the evening meal with the slop stirrer that was on duty in the afternoon and we came up with, Beef Burger, Peas, Mash and Gravy. The Beef burgers was a good idea as everyone can cook them, can’t they?? And the rest would hopefully be straight forward enough.
Well as promised she turned up at the arranged time on 4.45pm, which is the time she usually starts her rounds although she starts the other end of the ward and therefore gets to me about 5.30ish. By which time everything in sight is usually cooked to the Charcoal Stage.
Okay then first thoughts were, well its burger, mash and gravy no peas sorry run out. Here goes I thought as I dived in and headed straight for the Burger because after all that was the main ingredient that had been cooked especially for me.
YUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUK!!
If they thought that this horrible attempt at being a Burger was acceptable then there is a real serious problem. In its favour though it was warm but that is the only thing that was right. It was paper thin for a start which is a sure sign that it will probably always be overcooked by this lot. Then there is the redeeming factor that IT DOESN’T EVEN TASTE LIKE BEEF!! It was bone dry, tasted of cardboard and wood shavings mixed together with some obscure bean paste so that it can be shaped. It was absolutely disgusting and I would not have even fed it to my dog, if I had one. It was so bad I got in one of the nurses to taste it with me and she could not even stomach swallowing it which sadly I did. I hope I am not infected with some rare cardboard bug now because look out.
I would never have the cheek to serve this up as fit for human consumption not to mention the probable total lack of nutrients that you need from food.
Well then I guess it’s a packet of crisps and some nuts and grapes for a change although it is happening more often than I would like it. There are probably more calories in a packet of crisps than there would be in a whole days meals served here and that’s not right surely. Oh yeah I’ve heard the dulcet tines of the nurses walking around the ward offering out Build-Up drinks which although I will sing their praises as they can be very beneficial and have been a god send to me along the way but surely it should not be a failsafe back up for a useless menu and not good food etc. Quite often when the nurse or slop stirrer comes in to collect my still full plate of cold whatever it is the next words are do you want me to get you a build up?? NOOOOOOO I WANT TO BE FED DESCENT FOOD!!! Surely it’s not much to ask for??
Okay then having said all that the twist in the tail is that this morning when the slop stirrer came in with my early morning cuppa, she asked how the burgers were as it was her that I had discussed much earlier in the day what the choices were for tea time and she told me that one of her colleagues will be around to find out my choice later. I went on to tell her all about I being horrible and tasting like cardboard etc etc and she turned around and said,”Oh they must have been Quorn then”!!!!!!!!!!!!!!!!!!
No wonder they didn’t taste of beef. Ha Ha Ha!!
In a way though nothing changes because no matter what they were, they were not edible at all. I have tasted Quorn lots of times in the past and in fact I can remember cooking some Quorn Burgers myself at a Bar-B-Que some time ago and they actually taste really nice. They seem to be vastly over priced for what they are but then isn’t everything these days???
This is one reason, as I started out to say, not to fly off the handle unless you know all the facts although I guess in this case my attitude towards it are the same even after knowing the whole story.
I am very beginning to see that the whole catering side of your stay here is going rapidly downhill and I know by the till receipts that my Wife and my Mother and friends etc are showing me the cost of bringing in food to make up for the inadequate muck here is not cheap and in fact I would probably feed 3 for the price they fork out daily.
I will have to try and convince a top TV Chef to take up the Hospital Challenge such as Jamie Oliver did with the schools, but in saying that I think I am right in saying that both Egon Ronay and Gross Lloydman…sorry I mean Lloyd Grossman have both had a go at trying to sort out Health Service Catering with little or no success.
Seriously I think I will try and look into this a bit more deeply when I finally get out of here and maybe find out there is something I can do to try and sort out the problem. After all I will no doubt be back in again soon so will have to go through it all again anyhow.
Right off for a little snooze.
See Ya!!
As you all know the problems I’ve had in the dietary department since being in Heath Towers this time and I was, because I was so enraged last night , going to write yet another condemning blog today about the inedible slop they serve up here and this time it was cocked fresh for me and brought straight from the oven to me, no sitting around on the trolley for ages.
I had discussed what was available for the evening meal with the slop stirrer that was on duty in the afternoon and we came up with, Beef Burger, Peas, Mash and Gravy. The Beef burgers was a good idea as everyone can cook them, can’t they?? And the rest would hopefully be straight forward enough.
Well as promised she turned up at the arranged time on 4.45pm, which is the time she usually starts her rounds although she starts the other end of the ward and therefore gets to me about 5.30ish. By which time everything in sight is usually cooked to the Charcoal Stage.
Okay then first thoughts were, well its burger, mash and gravy no peas sorry run out. Here goes I thought as I dived in and headed straight for the Burger because after all that was the main ingredient that had been cooked especially for me.
YUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUUK!!
If they thought that this horrible attempt at being a Burger was acceptable then there is a real serious problem. In its favour though it was warm but that is the only thing that was right. It was paper thin for a start which is a sure sign that it will probably always be overcooked by this lot. Then there is the redeeming factor that IT DOESN’T EVEN TASTE LIKE BEEF!! It was bone dry, tasted of cardboard and wood shavings mixed together with some obscure bean paste so that it can be shaped. It was absolutely disgusting and I would not have even fed it to my dog, if I had one. It was so bad I got in one of the nurses to taste it with me and she could not even stomach swallowing it which sadly I did. I hope I am not infected with some rare cardboard bug now because look out.
I would never have the cheek to serve this up as fit for human consumption not to mention the probable total lack of nutrients that you need from food.
Well then I guess it’s a packet of crisps and some nuts and grapes for a change although it is happening more often than I would like it. There are probably more calories in a packet of crisps than there would be in a whole days meals served here and that’s not right surely. Oh yeah I’ve heard the dulcet tines of the nurses walking around the ward offering out Build-Up drinks which although I will sing their praises as they can be very beneficial and have been a god send to me along the way but surely it should not be a failsafe back up for a useless menu and not good food etc. Quite often when the nurse or slop stirrer comes in to collect my still full plate of cold whatever it is the next words are do you want me to get you a build up?? NOOOOOOO I WANT TO BE FED DESCENT FOOD!!! Surely it’s not much to ask for??
Okay then having said all that the twist in the tail is that this morning when the slop stirrer came in with my early morning cuppa, she asked how the burgers were as it was her that I had discussed much earlier in the day what the choices were for tea time and she told me that one of her colleagues will be around to find out my choice later. I went on to tell her all about I being horrible and tasting like cardboard etc etc and she turned around and said,”Oh they must have been Quorn then”!!!!!!!!!!!!!!!!!!
No wonder they didn’t taste of beef. Ha Ha Ha!!
In a way though nothing changes because no matter what they were, they were not edible at all. I have tasted Quorn lots of times in the past and in fact I can remember cooking some Quorn Burgers myself at a Bar-B-Que some time ago and they actually taste really nice. They seem to be vastly over priced for what they are but then isn’t everything these days???
This is one reason, as I started out to say, not to fly off the handle unless you know all the facts although I guess in this case my attitude towards it are the same even after knowing the whole story.
I am very beginning to see that the whole catering side of your stay here is going rapidly downhill and I know by the till receipts that my Wife and my Mother and friends etc are showing me the cost of bringing in food to make up for the inadequate muck here is not cheap and in fact I would probably feed 3 for the price they fork out daily.
I will have to try and convince a top TV Chef to take up the Hospital Challenge such as Jamie Oliver did with the schools, but in saying that I think I am right in saying that both Egon Ronay and Gross Lloydman…sorry I mean Lloyd Grossman have both had a go at trying to sort out Health Service Catering with little or no success.
Seriously I think I will try and look into this a bit more deeply when I finally get out of here and maybe find out there is something I can do to try and sort out the problem. After all I will no doubt be back in again soon so will have to go through it all again anyhow.
Right off for a little snooze.
See Ya!!
Thursday, October 26
The Marathon!!
What a day yesterday turned out to be. It started off quite good breathing wise and over the rest of the day got worse and worse AND WORSE!!!!
They have changed the Coloymycin as I have said to Tobramycin and yesterday was the first dose. Up till this time my breathing was fine but no sooner had I taken the required 300mg my chest became very wheezy. Later when the doctor came around I mentioned it to her and we agreed that I should give it another try later and see if it is the cause and not something else. If it proves to be this causing the wheeziness then I will go back on the Colomycin. She also recommended that I try and take a salbutamol nebuliser too, to maybe try and shift some of the muck she could hear in the bottom of my lungs. I have as I explained to her, taken these a number of times in the past especially when under Dr Gelder the Lung guy as they seem to be mandatory for every single patient in his care and mainly without no success at all apart from a lot of annoying coughing. So by now I think you have the picture I am coughing a fair bit.
To top it all along come my favourite favourite physio’s to take me on this long promised walk up the corridor. I did have the choice as to whether I wanted to do it or just a few gentle leg exercises, but by now my coughing had seemed to ease a bit and besides that I wanted to know really how far I am able to walk now I have been in here 2 weeks and had all this expert attention and treatments.
If I said it was pretty dismal that would be the understatement of the century. The stage was set for my grand marathon dash. The corridor was lined with hundreds of people waving flags and banners mostly saying,”What are you doing you idiot”? The route was planned in advance to avoid any wrong turns on the way. It was out through the door past the nurse station, which indecently looks nothing like a station!! Sharp right turn trying to avoid the many obstacles that always seem to congregate in the corridors here and then a straight run into the finish line in front of the official time keeper Cath whom had kindly accepted a healthy bribe from me earlier to ensure a good result. There was a Zimmer frame in front of me with one physio standing next to me and another physio behind me with a perfect view of my athletic bum, pushing a commode in case I need to sit down or use it for its intended purpose. Well ????? Could have done with one at the Olympics!!!!
Okay tension building now, butterflies in my stomach, dinner trying its best to pay my mouth another flying visit, here we go. On your marks……… Get set…….. Go…. And we’re off out through the door at lightning (Snail) speed, probably not even registering as movement at all on the speed camera aimed at me. Oh yes didn’t I tell you they have installed Speed Cameras on the ward now??? I think it’s more to see whether the dirt shifters and slop stirrers do actually move and are not rooted to the spot as it appears. Right back to the marathon. I was starting to build up a rhythm now, slow and steady, my heart was beginning to race, sweat was escaping from any available pore it could find, and my breathing was beginning to get weaker. All this and I had just passed the first marker at 1.5 metres from the bed, not bad I thought!! After mopping my brow the physio continued to shout encouragement, I couldn’t quite work out at the time what she meant by continually shouting “Encouragement, Encouragement”?? Right I was rapidly reaching the only turn in the course some 3 metres from the bedroom. A sharp right turn not unlike Beaches Brook in the Grand National, but not on grass and there’s no hurdle to go over and it turns left and I’m turning right, in fact it’s nothing like Beaches Brook forget I ever mentioned it. Well the corner was upon me and I managed to cut it slightly so as to save a bit of energy, narrowly missing an abandoned little Malawi boy probably around 18 mths or so old who says his mother had sent him down the shop for a packet of fags and pick up a brother or sister while your at it.. I was beginning to really struggle by now and decided that I really did have to stop if I fancied living a little longer so the Commode was placed and I pretty much collapsed in a heap on top of it. I was struggling to get any breath in at all and my pulse rate must have been through the roof which was just making matters worse. As I rarely get out of the room when I am in here lots of people were coming up to me asking if I’m fine and can they do anything for me. Well do I look fine and please please please don’t wait for a response top your questions as I am finding it hard enough to just breathe so you will excuse me if I use up my available oxygen levels to stay alive and not answer you Ha Ha Ha!!! I was thinking to myself at the time that maybe I had pushed it a bit too far this time but thankfully after around 5 or 10 mins I managed to get back to a decent state. With that I was up and off again hurtling towards the finish line. The only thing I could see was a vision in my head of Cath standing there with a wad a cash in her hand laughing at me as she didn’t need to lie after all as I never make it to the finish line. Not on your life I made it just before collapsing in a heap again in the commode puffing and panting like there was no tomorrow. The crowd were all cheering, for the streaker that had run past not me. Again after 5 or 10 minutes my breathing was back to normal and my heart had slowed dramatically too and they pushed me back the 15 metres or so to my bed. By the time I got there my coughing had started again not that I was surprised with this.
After a quick check to see if I was okay the physio’s were off quite pleased with how far I had made it. I wasn’t as impressed I’m sad to say. Up till a couple of weeks ago I would have easily made it the whole way through without stopping although I would have been in the same mess at the end as I was today, so it just proved to me that I am far from going home at this rate.
The coughing seemed to gradually get worse almost immediately after doing this marathon. It started with the usual rattle in the throat then slowly progressed to being a rattle deeper down in my lung until eventually it was pretty constant uncontrollable heavy cough. I had a feeling of a constant tickle in my throat making things worse. I haven’t coughed like this for a long long time and it was making breathing very difficult at times. At this rate I would not be surprised if I was to break a rib or something and was also expecting to have a couple of blood shot eyes. It was actually quite scary as when you are struggling to take a breath and can’t do it you start to panic which just makes things worse. Unfortunately this carried on all night pretty much so by this morning I am absolutely knackered. My whole chest and back are quite painful and tender due to the muscles having a right old work out. The only position I found after about 7 hours of trying that the rattling eased a little is to sit up bolt upright which I find to do let alone try and sleep in this position.
Thankfully for the minute the rattling has eased although it hasn’t gone as such. It was probably down to all of the above as to what has caused this change although pushing a bit too hard is my idea as to what was the real cause.
I am feeling a little sickly today too which I’m not surprised at all due to the effect of constantly coughing on my stomach etc. I managed to keep things down all night although it was touch and go at times let me tell you!!
I think I will give physio a miss for today maybe wise. I’m waiting for Merlin to come around to break the news to him gently that he is going to be stuck with me for a little while yet, but in saying that I think he is off next week anyway so he will not have the pleasure of my company for a whole week. LUCKY BUGGER!!!!!
See Ya!!
They have changed the Coloymycin as I have said to Tobramycin and yesterday was the first dose. Up till this time my breathing was fine but no sooner had I taken the required 300mg my chest became very wheezy. Later when the doctor came around I mentioned it to her and we agreed that I should give it another try later and see if it is the cause and not something else. If it proves to be this causing the wheeziness then I will go back on the Colomycin. She also recommended that I try and take a salbutamol nebuliser too, to maybe try and shift some of the muck she could hear in the bottom of my lungs. I have as I explained to her, taken these a number of times in the past especially when under Dr Gelder the Lung guy as they seem to be mandatory for every single patient in his care and mainly without no success at all apart from a lot of annoying coughing. So by now I think you have the picture I am coughing a fair bit.
To top it all along come my favourite favourite physio’s to take me on this long promised walk up the corridor. I did have the choice as to whether I wanted to do it or just a few gentle leg exercises, but by now my coughing had seemed to ease a bit and besides that I wanted to know really how far I am able to walk now I have been in here 2 weeks and had all this expert attention and treatments.
If I said it was pretty dismal that would be the understatement of the century. The stage was set for my grand marathon dash. The corridor was lined with hundreds of people waving flags and banners mostly saying,”What are you doing you idiot”? The route was planned in advance to avoid any wrong turns on the way. It was out through the door past the nurse station, which indecently looks nothing like a station!! Sharp right turn trying to avoid the many obstacles that always seem to congregate in the corridors here and then a straight run into the finish line in front of the official time keeper Cath whom had kindly accepted a healthy bribe from me earlier to ensure a good result. There was a Zimmer frame in front of me with one physio standing next to me and another physio behind me with a perfect view of my athletic bum, pushing a commode in case I need to sit down or use it for its intended purpose. Well ????? Could have done with one at the Olympics!!!!
Okay tension building now, butterflies in my stomach, dinner trying its best to pay my mouth another flying visit, here we go. On your marks……… Get set…….. Go…. And we’re off out through the door at lightning (Snail) speed, probably not even registering as movement at all on the speed camera aimed at me. Oh yes didn’t I tell you they have installed Speed Cameras on the ward now??? I think it’s more to see whether the dirt shifters and slop stirrers do actually move and are not rooted to the spot as it appears. Right back to the marathon. I was starting to build up a rhythm now, slow and steady, my heart was beginning to race, sweat was escaping from any available pore it could find, and my breathing was beginning to get weaker. All this and I had just passed the first marker at 1.5 metres from the bed, not bad I thought!! After mopping my brow the physio continued to shout encouragement, I couldn’t quite work out at the time what she meant by continually shouting “Encouragement, Encouragement”?? Right I was rapidly reaching the only turn in the course some 3 metres from the bedroom. A sharp right turn not unlike Beaches Brook in the Grand National, but not on grass and there’s no hurdle to go over and it turns left and I’m turning right, in fact it’s nothing like Beaches Brook forget I ever mentioned it. Well the corner was upon me and I managed to cut it slightly so as to save a bit of energy, narrowly missing an abandoned little Malawi boy probably around 18 mths or so old who says his mother had sent him down the shop for a packet of fags and pick up a brother or sister while your at it.. I was beginning to really struggle by now and decided that I really did have to stop if I fancied living a little longer so the Commode was placed and I pretty much collapsed in a heap on top of it. I was struggling to get any breath in at all and my pulse rate must have been through the roof which was just making matters worse. As I rarely get out of the room when I am in here lots of people were coming up to me asking if I’m fine and can they do anything for me. Well do I look fine and please please please don’t wait for a response top your questions as I am finding it hard enough to just breathe so you will excuse me if I use up my available oxygen levels to stay alive and not answer you Ha Ha Ha!!! I was thinking to myself at the time that maybe I had pushed it a bit too far this time but thankfully after around 5 or 10 mins I managed to get back to a decent state. With that I was up and off again hurtling towards the finish line. The only thing I could see was a vision in my head of Cath standing there with a wad a cash in her hand laughing at me as she didn’t need to lie after all as I never make it to the finish line. Not on your life I made it just before collapsing in a heap again in the commode puffing and panting like there was no tomorrow. The crowd were all cheering, for the streaker that had run past not me. Again after 5 or 10 minutes my breathing was back to normal and my heart had slowed dramatically too and they pushed me back the 15 metres or so to my bed. By the time I got there my coughing had started again not that I was surprised with this.
After a quick check to see if I was okay the physio’s were off quite pleased with how far I had made it. I wasn’t as impressed I’m sad to say. Up till a couple of weeks ago I would have easily made it the whole way through without stopping although I would have been in the same mess at the end as I was today, so it just proved to me that I am far from going home at this rate.
The coughing seemed to gradually get worse almost immediately after doing this marathon. It started with the usual rattle in the throat then slowly progressed to being a rattle deeper down in my lung until eventually it was pretty constant uncontrollable heavy cough. I had a feeling of a constant tickle in my throat making things worse. I haven’t coughed like this for a long long time and it was making breathing very difficult at times. At this rate I would not be surprised if I was to break a rib or something and was also expecting to have a couple of blood shot eyes. It was actually quite scary as when you are struggling to take a breath and can’t do it you start to panic which just makes things worse. Unfortunately this carried on all night pretty much so by this morning I am absolutely knackered. My whole chest and back are quite painful and tender due to the muscles having a right old work out. The only position I found after about 7 hours of trying that the rattling eased a little is to sit up bolt upright which I find to do let alone try and sleep in this position.
Thankfully for the minute the rattling has eased although it hasn’t gone as such. It was probably down to all of the above as to what has caused this change although pushing a bit too hard is my idea as to what was the real cause.
I am feeling a little sickly today too which I’m not surprised at all due to the effect of constantly coughing on my stomach etc. I managed to keep things down all night although it was touch and go at times let me tell you!!
I think I will give physio a miss for today maybe wise. I’m waiting for Merlin to come around to break the news to him gently that he is going to be stuck with me for a little while yet, but in saying that I think he is off next week anyway so he will not have the pleasure of my company for a whole week. LUCKY BUGGER!!!!!
See Ya!!
Wednesday, October 25
Another Day!!
Poor old, or should I say young, nubile, athletic…is that enough creeping???, Penelope Pitstop returned from her foreign frolics to be faced with her worst nightmare, ME!!!!!!!! Ha ha ha. She popped her head through the door first thing in the morning to say Hi and let me know that she had been reading my blog before she came in so was thankfully aware of the problems I have had the last couple of weeks. I’m surprised she came in actually as I would have probably phoned in sick until I had gone home. The woman’s made of sterner stuff than me obviously.
After the Heath Towers Express blasted through with its usual reckless abandonment I set about trying to get a few minutes sleep but alas it is just never going to be possible here is it? I’m going to sleep for a fortnight when I get home to catch up so I’m pre warning you all my phone will be off and I won’t be blogging for 2 weeks when I get out..
Ah yes Penelope… where do we start then??? We had a good long natter about things like the Slop stirrers leaving the dishes and missing the cuppas and also things like serving Lasagne with Swede and Gravy!!!!!!!!!! Please I ask you….my taste buds have been cleverly honed over the years due to my culinary expertise and I come in here for 2 weeks and their knackered by the pig swill they try and serve up as humanly edible. Take yesterday for example. The fact that they have to wear masks when they come in my room means that they leave me till last to be fed. By the time they got to me the choice was, Boiled Ham which is actually that processed stuff made of all the nasty bits shaped into neat round circles or Baked Potato, which is boiled then put in the oven for 5 mins making it nice and juicy or should I say Runny inside. I could have either of these with the obligatory Swede, Mash and Gravy. Mamma that sounds nice, Baked Potato, Swede, Mash and Gravy Yummy Yummy!!!! I hasten to add I declined the generous offer fairly quickly and thanked god that I had asked my mum to bring me in a nice warm pie just a little bit earlier so that filled the gap along with a flask full of gorgeous roasted Veg she had made as a surprise. She spoils me I know but I would think it would be quite hard not to spoil such an angel like me!!!!
We also chatted about the dirt shifters and the nurse who believes she is more knowledgeable than the doctors and decides herself when to give dressings and medications etc. also things like refusing to have my bed made and she did explain that they had had a complaint regarding the making of beds recently so in a way the nurse was right that it needs to be recorded but not in the manner it was written and maybe declined would be more appropriate than refused which I agree. I think her poor head must have been banging when she left to try and sort out all the other problems we had discussed.
Later she returned saying that she had talked to the slop stirrer supervisor and had made my point quite clearly that the service was unacceptable in fact my words were “IT WAS CRAP!!!!” I think her version might have been a bit more diplomatic though. They have promised to look into the problems and try and resolve the things they can like arranging the staff rota’s more effectively so that there is always a regular slop stirrer on and not all new comers and see what they can do with the food situation. I can tell them what to do with their food!!!!!
All in all Penelope did a great job as usual and ensured me she will continue to try and stop all things happening in the future not just to me but to all patients. Let’s just hope I don’t have another couple of them Red Carpet days as I don’t think I will be able to cope.
Health wise….. The physio’s paid me a visit as usual early afternoon and decided after listening to my rattly chest that it would be a good idea to do some chest percussions which involves me lying on one side then the other and the physio using cupped hand and through a towel beating up and down my rib cage at the back quite hard. The idea is the resonance from the beating releases any phlegm that may be lurking in my lungs. It does work at times although sometimes I find if its way down in the bottom of my lungs it just won’t come up. Also I find it often comes up a bit later on when I have relaxed a bit. The whole process makes you feel quite wheezy and knackered afterwards for quite a while. I suppose they have disturbed whatever secretions there were there and they are sort of loose throughout the tubes. They also have changed my regular nebuliser that I have taken for what must be nearly 2 years or so now as it might not be as effective as it once was, not that it was ever that effective anyhow as I still used to come in with pseudomonas infections as you all know and that was the only bug that this was supposed to protect me from. This new one called Tobramycin is very similar apart from the fact it is almost 4 times the amount I used to take so takes around 45 mins to go through and it so far has made me very wheezy after taking it. It’s a bit of a pain to make up too as they only have small vials 80mg’s and just to be awkward I have to take 300 mg’s and not the easy thing like taking 320 mg’s to use up all the last vial. In saying that though I will have to put up with it for another 10 minutes or so if they do so 300 mg’s is fine by me. They have done another scan of my heart and a chest x-ray just to see if things have changed but it seems not although I am waiting now for the Merlin’s daily entourage to arrive bang on lunch time as usual so will maybe let you know more tomorrow.
I have decided too that am going to start to charge for my Advice Helpline from now on as it seems that yesterday there was a constant queue outside my door waiting to either pick my culinary brains or my computer knowledge. No one really interested I how I am just things like “how do you make a nice shepherds pie and how to slow cook Beef shins quicker”. Then things like “what’s the best to buy a laptop or a home pc” etc etc etc
See Ya!!
After the Heath Towers Express blasted through with its usual reckless abandonment I set about trying to get a few minutes sleep but alas it is just never going to be possible here is it? I’m going to sleep for a fortnight when I get home to catch up so I’m pre warning you all my phone will be off and I won’t be blogging for 2 weeks when I get out..
Ah yes Penelope… where do we start then??? We had a good long natter about things like the Slop stirrers leaving the dishes and missing the cuppas and also things like serving Lasagne with Swede and Gravy!!!!!!!!!! Please I ask you….my taste buds have been cleverly honed over the years due to my culinary expertise and I come in here for 2 weeks and their knackered by the pig swill they try and serve up as humanly edible. Take yesterday for example. The fact that they have to wear masks when they come in my room means that they leave me till last to be fed. By the time they got to me the choice was, Boiled Ham which is actually that processed stuff made of all the nasty bits shaped into neat round circles or Baked Potato, which is boiled then put in the oven for 5 mins making it nice and juicy or should I say Runny inside. I could have either of these with the obligatory Swede, Mash and Gravy. Mamma that sounds nice, Baked Potato, Swede, Mash and Gravy Yummy Yummy!!!! I hasten to add I declined the generous offer fairly quickly and thanked god that I had asked my mum to bring me in a nice warm pie just a little bit earlier so that filled the gap along with a flask full of gorgeous roasted Veg she had made as a surprise. She spoils me I know but I would think it would be quite hard not to spoil such an angel like me!!!!
We also chatted about the dirt shifters and the nurse who believes she is more knowledgeable than the doctors and decides herself when to give dressings and medications etc. also things like refusing to have my bed made and she did explain that they had had a complaint regarding the making of beds recently so in a way the nurse was right that it needs to be recorded but not in the manner it was written and maybe declined would be more appropriate than refused which I agree. I think her poor head must have been banging when she left to try and sort out all the other problems we had discussed.
Later she returned saying that she had talked to the slop stirrer supervisor and had made my point quite clearly that the service was unacceptable in fact my words were “IT WAS CRAP!!!!” I think her version might have been a bit more diplomatic though. They have promised to look into the problems and try and resolve the things they can like arranging the staff rota’s more effectively so that there is always a regular slop stirrer on and not all new comers and see what they can do with the food situation. I can tell them what to do with their food!!!!!
All in all Penelope did a great job as usual and ensured me she will continue to try and stop all things happening in the future not just to me but to all patients. Let’s just hope I don’t have another couple of them Red Carpet days as I don’t think I will be able to cope.
Health wise….. The physio’s paid me a visit as usual early afternoon and decided after listening to my rattly chest that it would be a good idea to do some chest percussions which involves me lying on one side then the other and the physio using cupped hand and through a towel beating up and down my rib cage at the back quite hard. The idea is the resonance from the beating releases any phlegm that may be lurking in my lungs. It does work at times although sometimes I find if its way down in the bottom of my lungs it just won’t come up. Also I find it often comes up a bit later on when I have relaxed a bit. The whole process makes you feel quite wheezy and knackered afterwards for quite a while. I suppose they have disturbed whatever secretions there were there and they are sort of loose throughout the tubes. They also have changed my regular nebuliser that I have taken for what must be nearly 2 years or so now as it might not be as effective as it once was, not that it was ever that effective anyhow as I still used to come in with pseudomonas infections as you all know and that was the only bug that this was supposed to protect me from. This new one called Tobramycin is very similar apart from the fact it is almost 4 times the amount I used to take so takes around 45 mins to go through and it so far has made me very wheezy after taking it. It’s a bit of a pain to make up too as they only have small vials 80mg’s and just to be awkward I have to take 300 mg’s and not the easy thing like taking 320 mg’s to use up all the last vial. In saying that though I will have to put up with it for another 10 minutes or so if they do so 300 mg’s is fine by me. They have done another scan of my heart and a chest x-ray just to see if things have changed but it seems not although I am waiting now for the Merlin’s daily entourage to arrive bang on lunch time as usual so will maybe let you know more tomorrow.
I have decided too that am going to start to charge for my Advice Helpline from now on as it seems that yesterday there was a constant queue outside my door waiting to either pick my culinary brains or my computer knowledge. No one really interested I how I am just things like “how do you make a nice shepherds pie and how to slow cook Beef shins quicker”. Then things like “what’s the best to buy a laptop or a home pc” etc etc etc
See Ya!!
Tuesday, October 24
Cant Get No Sleep!!
Well what do you know? The bloody dirt shifters have decided to play up as well just for the hell of it. They did not come in and clean my room or even change the bin bag yesterday. I recon they have decided that they are missing out on some valuable free publicity on here as everyone else have managed to get it. Well I don’t want to be the one to disappoint them so here goes. “Dirt Shifters”, YOU ARE CRAP AND USELESS”. In fact I would go as far as to say that my room is probably hygienically cleaner today than it would have been if you had cleaned it yesterday. I don’t think there is anyone else that hasn’t caused me any grief left, apart from the porters, oh, and the Pharmacy Department and I know the plan is to maybe turf me out into the wild evil world later in the week possibly, I will definitely be having dealings with Pharmacy and I’m sure they will be up to their usual incompetent and sluggish selves. I better start asking for my take home drugs now (Tuesday) and they maybe ready by the weekend. I could safely say that I could write that days blog accurately already as it never fails to amaze me at how many incompetent people are involved and how slow the various cogs work in such an act that is repeated loads of times a day on every ward in the hospital. It is not unknown for me to be told at 9am ish that I can go home and still be waiting around till about 8pm or even later before I could actually go, mainly because of the drugs. Even when I have known the day before and got the doctors to fill in all relevant paperwork and Pharmacy having it the DAY BEFORE!! I am still here till about 8pm the next day, its bloody ridiculous!!!!
Right, I started to go off a bit then and to be honest I was stealing my thunder from Fridays blog or whatever day it is that I get these shackles taken off. A bit like shooting myself in the foot which I am good at.
I know I have brought up this subject, well you could say a few HUNDRED times but it is generally getting on my nerves at the moment. It’s the old matter of Lack Of Sleep. I don’t know about you but I do try, although quite unsuccessfully for a number of weeks now at least, to get about 8 hours sleep and that started me thinking. Say it takes you about 15-20 minutes to actually get to sleep when your head hits the pillow you need a spell of no disturbance for 8hours and 20 minutes. The routine in here, and that does not include any treatments that are needed, is that the Ob’s as they call them which are Blood Pressure\ Pulse\ Temp check etc are due to be done at 10pm and then again at 6am so you could in effect get nearly 8 hours but not the 20 minutes per night. Well that is the theory and is strongly based on the idea that everything runs smoothly and on time.
NOW LET ME GIVE YOU THE REAL SCOOP!!!!
The nursing assistant who is on duty for the night waits till about 11.30, just as you are starting to nod off, to come in to do your Ob’s. This usually involves turning on every available light which is just what your eyes needed and the machines are not the quietest in the world. After your 10 minutes of attention they are off, usually leaving the lights on. Then it’s the wait for the other nurse to turn up with your dose of antibiotics and if not your drugs that are due (unless like me you take your own). This can be anytime from 10pm to about 1am usually depending on how busy they are. As a rule they usually come into me at around12.30am. The chosen poison at the moment is given over about an hour then you either wait for the nurse to look through the window to see if it has finished usually about 3 hours later or do as I do and press the buzzer to get them to unhook you. So there we are already it is now about 1am and finally you are allowed to go to sleep. Yeah Right!!!! By now due to the attention and the lights going on full blast etc etc I am usually wide awake and if I am lucky I might get to sleep in about an hour so that takes me to around 2am. Okay, are you keeping up so far???? Good!!! Right then I have been asleep now since 2am and am just getting to the point in my dream where I climb up the tower, well stumble really because the dragon bit off one of my legs earlier in the dream, swine!! To rescue Princess Judith from her wicked, evil husband when you hear the dulcet tones of the night nurse saying “I’ve come to take your Ob’s love”. Grrrrrrrrrrrrr!!!!!!!!!! A quick glance of the watch and pretty much always it says 6am meaning I have had the grand total of 4 hours. The same procedure is followed ALL LIGHTS ON!!! NOISY BLOODY MACHINE!!! Etc etc I think the general idea is to wake you up so you don’t miss the rest of the Heath Towers Express that is to follow and in that case they definitely do their job properly. Then usually not far behind them is the next person in this daily pantomime the nurse to give you your antibiotics, which again just adds towards the general aim of waking you up. Then along come the slop stirrers and not just once either. They actually come around 3 BLOODY TIMES!!! In about 2-3 hours. First it’s to replace the water jug and cup which as I tell every one of them, “don’t bother as I don’t drink the stuff I prefer my own juices and stuff”, but they never listen, even the ones who I have known for nearly 3 years. Then comes the Tea Trolley trundling through the ward. Believe me when I say that this thing's really noisy. Even with my hearing the way it is I can still hear this thing coming for miles. The head pops around the door, “Cup Of Tea”?? no I want a coffee with 1 sugar which I have been having from you for the last 3 blinking years, surely you have the message now that I only ever drink Coffee with 1 sugar??? After a short wait which is usually just about long enough for the slop stirrer to burn the porridge and over boil the eggs in readiness, oh yes, and make sure they grill all the toast first so it is just slightly warmer than it would have been if it had come straight out of the freezer, but not as warm as the fridge. I think the idea with the toast is to try and serve it at the same temperature as the butter which is always nice and chilled. Quite often I ask for some toast now but I must say that the nurses are good in the fact that they don’t mind making me some a bit later on in the morning as quite often I can’t face food for a couple of hours first thing in the morning. The other trick I have found which does work sometimes although it did backfire yesterday is that I ask for a piece of Brown Toast which as a rule they don’t do, they usually make up a load of white toast. As a result they usually have to go off and make some fresh so it’s at least on the warm side of cold for a change.
Usually by now then you are well and truly awake after having around 4 hours of sleep and not the 8 that you need or at least want. I suppose over a few days this doesn’t make a lot of difference but if like me you are usually in for a couple of weeks I probably loose the equivalent of 2 or 3 days worth of sleep which surely can’t be good for your general recovery, can it?? As I have pointed out numerous times in the past once the Train starts it has to run it’s course so you try and get a little snooze in when you can during the day and evening but every expert in these matters will tell you that the benefits of this are minimal if not none because it is not the correct type of sleep. It does help sometimes though all be it psychological I suppose.
Is there an answer to this burning issue I ask myself??? Well I guess there are things which would help in a small way but I guess the bottom line will always be MONEY!!!! As the nurses all ready rushed off their feet would need additional colleagues employed to ease the burden and as we both know that just won’t happen. So we are stuck with the status quo!!
Right. I seem to have gotten the bug of writing again whilst being in here as my blogs seem to be endless and not the small ones I did whilst I was home. Maybe I will try and dig out a copy of my book and continue on writing where I finished off. That way I might actually get to finish it one day!!
See Ya!!
Right, I started to go off a bit then and to be honest I was stealing my thunder from Fridays blog or whatever day it is that I get these shackles taken off. A bit like shooting myself in the foot which I am good at.
I know I have brought up this subject, well you could say a few HUNDRED times but it is generally getting on my nerves at the moment. It’s the old matter of Lack Of Sleep. I don’t know about you but I do try, although quite unsuccessfully for a number of weeks now at least, to get about 8 hours sleep and that started me thinking. Say it takes you about 15-20 minutes to actually get to sleep when your head hits the pillow you need a spell of no disturbance for 8hours and 20 minutes. The routine in here, and that does not include any treatments that are needed, is that the Ob’s as they call them which are Blood Pressure\ Pulse\ Temp check etc are due to be done at 10pm and then again at 6am so you could in effect get nearly 8 hours but not the 20 minutes per night. Well that is the theory and is strongly based on the idea that everything runs smoothly and on time.
NOW LET ME GIVE YOU THE REAL SCOOP!!!!
The nursing assistant who is on duty for the night waits till about 11.30, just as you are starting to nod off, to come in to do your Ob’s. This usually involves turning on every available light which is just what your eyes needed and the machines are not the quietest in the world. After your 10 minutes of attention they are off, usually leaving the lights on. Then it’s the wait for the other nurse to turn up with your dose of antibiotics and if not your drugs that are due (unless like me you take your own). This can be anytime from 10pm to about 1am usually depending on how busy they are. As a rule they usually come into me at around12.30am. The chosen poison at the moment is given over about an hour then you either wait for the nurse to look through the window to see if it has finished usually about 3 hours later or do as I do and press the buzzer to get them to unhook you. So there we are already it is now about 1am and finally you are allowed to go to sleep. Yeah Right!!!! By now due to the attention and the lights going on full blast etc etc I am usually wide awake and if I am lucky I might get to sleep in about an hour so that takes me to around 2am. Okay, are you keeping up so far???? Good!!! Right then I have been asleep now since 2am and am just getting to the point in my dream where I climb up the tower, well stumble really because the dragon bit off one of my legs earlier in the dream, swine!! To rescue Princess Judith from her wicked, evil husband when you hear the dulcet tones of the night nurse saying “I’ve come to take your Ob’s love”. Grrrrrrrrrrrrr!!!!!!!!!! A quick glance of the watch and pretty much always it says 6am meaning I have had the grand total of 4 hours. The same procedure is followed ALL LIGHTS ON!!! NOISY BLOODY MACHINE!!! Etc etc I think the general idea is to wake you up so you don’t miss the rest of the Heath Towers Express that is to follow and in that case they definitely do their job properly. Then usually not far behind them is the next person in this daily pantomime the nurse to give you your antibiotics, which again just adds towards the general aim of waking you up. Then along come the slop stirrers and not just once either. They actually come around 3 BLOODY TIMES!!! In about 2-3 hours. First it’s to replace the water jug and cup which as I tell every one of them, “don’t bother as I don’t drink the stuff I prefer my own juices and stuff”, but they never listen, even the ones who I have known for nearly 3 years. Then comes the Tea Trolley trundling through the ward. Believe me when I say that this thing's really noisy. Even with my hearing the way it is I can still hear this thing coming for miles. The head pops around the door, “Cup Of Tea”?? no I want a coffee with 1 sugar which I have been having from you for the last 3 blinking years, surely you have the message now that I only ever drink Coffee with 1 sugar??? After a short wait which is usually just about long enough for the slop stirrer to burn the porridge and over boil the eggs in readiness, oh yes, and make sure they grill all the toast first so it is just slightly warmer than it would have been if it had come straight out of the freezer, but not as warm as the fridge. I think the idea with the toast is to try and serve it at the same temperature as the butter which is always nice and chilled. Quite often I ask for some toast now but I must say that the nurses are good in the fact that they don’t mind making me some a bit later on in the morning as quite often I can’t face food for a couple of hours first thing in the morning. The other trick I have found which does work sometimes although it did backfire yesterday is that I ask for a piece of Brown Toast which as a rule they don’t do, they usually make up a load of white toast. As a result they usually have to go off and make some fresh so it’s at least on the warm side of cold for a change.
Usually by now then you are well and truly awake after having around 4 hours of sleep and not the 8 that you need or at least want. I suppose over a few days this doesn’t make a lot of difference but if like me you are usually in for a couple of weeks I probably loose the equivalent of 2 or 3 days worth of sleep which surely can’t be good for your general recovery, can it?? As I have pointed out numerous times in the past once the Train starts it has to run it’s course so you try and get a little snooze in when you can during the day and evening but every expert in these matters will tell you that the benefits of this are minimal if not none because it is not the correct type of sleep. It does help sometimes though all be it psychological I suppose.
Is there an answer to this burning issue I ask myself??? Well I guess there are things which would help in a small way but I guess the bottom line will always be MONEY!!!! As the nurses all ready rushed off their feet would need additional colleagues employed to ease the burden and as we both know that just won’t happen. So we are stuck with the status quo!!
Right. I seem to have gotten the bug of writing again whilst being in here as my blogs seem to be endless and not the small ones I did whilst I was home. Maybe I will try and dig out a copy of my book and continue on writing where I finished off. That way I might actually get to finish it one day!!
See Ya!!
Monday, October 23
Drugs!!
Do you know what? I must be really really dumb. I don’t blame you all for agreeing with me either. How many times have I tempted fate and said in the past that I feel a little better today only to end up shortly afterwards feeling worse again. Well yesterday was one of them days. As I said I think that things might be heading in the generally good direction and I couldn’t remember my chest being the least wheezy the day before. No sooner had I Emailed in the blog for you to look at my chest decided to play up again and the dreaded Death Rattle re appeared. I tried all the usual things to clear it, various Nebuliser’s and breathing exercises and sitting or lying in particular positions which sometimes works but all to no avail. In fact I finally fell off to sleep at what must have been around 12.30am still annoyingly rattling away. It’s a weird noise too as if the light s are off and its dark enough nurses have quite often come in, in the morning saying “you were snoring your head off last night”, where in fact it was the wheezing that they had heard and that beneath those shut eyes was a man being slowly driven mad by the constant torture, Hell, even the Japanese Prisoners of War weren’t tortured 24 hours a day. Ha Ha, I just had a thought, with all the Roast Chicken they seem to dish out more regular than anything else on the ward, I should start to make them little model ships etc that the POW’s used to make. Give me something to do I guess.
On the earlier point of saying I felt well only to feel dreadful later on. I remember when I had not been long diagnosed and was in the middle of the Chemo regime. I was given a drug, I think it was Daunarubicin or something like that anyhow, one of the Chemo’s they were giving me anyhow. Well it was only a Bolus injection so about 10 mins or so after having it I went off for a wander downstairs, well to tell the truth I actually went down for a fag because I was smoker back then although have now been nicotine free for about 16 months I think now, although I have never kept track of it at all. I remember feeling quite well actually and even might go as far as saying that the injection had made me feel a little better which I remember thinking might be a good thing. I settled down in the Gazebo for a smoke and decided to give Judith a ring for a chat. I was saying to her how well I felt and she was pleased as I was suffering a lot back then with sickness which sadly has always been a problem with me. After a while and probably 3 fags which was the usual thing and all within about 5 minutes I headed off back up to the ward. No sooner had I done this that I started to feel really unwell. It started with an over all feeling of being very hot, also extremely queasy and quite dizzy too. Well unfortunately the ward was a long way away and I thought there is no way I was going to make it back in one piece, not without probably leaving a trail to follow behind me from both ends too as the back one was starting to rumble with its signs of dissatisfaction of being made to carry around this toxic cocktail. Luckily enough for me one of the porters John was walking past and stopped to ask if I was okay. They had all got to know me by then as they seemed to be permanently taking me somewhere or other to be poked and prodded or filmed in one way or another always stopped for a chat when they saw me. Thankfully he was heading in my direction in fact he was going to the ward above mine so told me to jump in the wheelchair and he put on the turbo boosters and we were back to the safety of the ward in a matter of seconds. Just as well actually as my first port of call was not the bed, but the toilet and I just managed to get there on time thankfully.
I soon learnt that these drugs are not to be taken likely and are quite potent concoctions that have some quite nasty side effects. I think it was probably about this time that I started to ask for the Written Patient Information or failing that the BMA book before, most of the time, they were going to give me a new drug of some sort. At least that way you can be prepared of any that you might need to look out for because to be honest unless you ask for such things the general practice is to not give it out. This goes for all your medications that are dished out to you. They arrive in this little plastic pot which is sometimes wet in the bottom making the tablets that are inside taste foul as they have started to dissolve. You’re not told, well most of the time you are not, whether you need to take them with food or on an empty stomach. With milk or water. Not with other medications etc… I actually had one tablet once that I think was some kind of calcium based drug. Then instructions were something like. Taken strictly with 250ml of water Absolutely not with milk. Not with any other medications. 1 hour before food. Patient must sit up and not lie down for 45 minutes after taking it. There was actually a list of 4 drugs which must not be taken whilst on this medication and I was on all 4 of them. They actually gave me this medication with my breakfast about 15 minutes after taking the rest of my pills, offered me a glass of milk to take it with and when I told her I was really tired as I hadn’t slept too well she said “ okay love I will close the blinds on the door and tell all the staff to stay out for a couple of hours and you lay down and get some sleep” I must add that this was not at Heath Towers but at the place I like to think of as Colditz, Llandough Hospital. I really hate that place and will fight tooth and nail not to go there if I can help it but sadly the chest team are based there and they have their main ward there too.
I guess this along with a few other mistakes with medications etc along the way is why I now self medicate whenever I come in. They are very understanding on C1 and allow me to do it with no questions apart from the controlled drugs I may be on at the time which is only understandable. The only time there has been any problems is when the doctors have decided to change any of my medications and they haven’t told me which is quite rare I must add but does happen. I would do my own IV’s if I could as I am an expert at them now having had so many over the years and the fact that I’m a nosey bugger and want to know the ins and out of everything so are always asking questions.
Right then I’m off. Is it me or do my blogs seem to have rather long since I come in here. Sorry.
I wish they wouldn’t do that, just open the door slightly and start talking to me as I never have my hearing aids in and rely a bit I supposed on lip reading to see what they are saying. A bit hard through a lump of wood
I think Penelope is back this week too I hope she is ready for me as I think there might be a few things I have to say to her. Sorry in advance Penelope dearest.
See Ya!!
On the earlier point of saying I felt well only to feel dreadful later on. I remember when I had not been long diagnosed and was in the middle of the Chemo regime. I was given a drug, I think it was Daunarubicin or something like that anyhow, one of the Chemo’s they were giving me anyhow. Well it was only a Bolus injection so about 10 mins or so after having it I went off for a wander downstairs, well to tell the truth I actually went down for a fag because I was smoker back then although have now been nicotine free for about 16 months I think now, although I have never kept track of it at all. I remember feeling quite well actually and even might go as far as saying that the injection had made me feel a little better which I remember thinking might be a good thing. I settled down in the Gazebo for a smoke and decided to give Judith a ring for a chat. I was saying to her how well I felt and she was pleased as I was suffering a lot back then with sickness which sadly has always been a problem with me. After a while and probably 3 fags which was the usual thing and all within about 5 minutes I headed off back up to the ward. No sooner had I done this that I started to feel really unwell. It started with an over all feeling of being very hot, also extremely queasy and quite dizzy too. Well unfortunately the ward was a long way away and I thought there is no way I was going to make it back in one piece, not without probably leaving a trail to follow behind me from both ends too as the back one was starting to rumble with its signs of dissatisfaction of being made to carry around this toxic cocktail. Luckily enough for me one of the porters John was walking past and stopped to ask if I was okay. They had all got to know me by then as they seemed to be permanently taking me somewhere or other to be poked and prodded or filmed in one way or another always stopped for a chat when they saw me. Thankfully he was heading in my direction in fact he was going to the ward above mine so told me to jump in the wheelchair and he put on the turbo boosters and we were back to the safety of the ward in a matter of seconds. Just as well actually as my first port of call was not the bed, but the toilet and I just managed to get there on time thankfully.
I soon learnt that these drugs are not to be taken likely and are quite potent concoctions that have some quite nasty side effects. I think it was probably about this time that I started to ask for the Written Patient Information or failing that the BMA book before, most of the time, they were going to give me a new drug of some sort. At least that way you can be prepared of any that you might need to look out for because to be honest unless you ask for such things the general practice is to not give it out. This goes for all your medications that are dished out to you. They arrive in this little plastic pot which is sometimes wet in the bottom making the tablets that are inside taste foul as they have started to dissolve. You’re not told, well most of the time you are not, whether you need to take them with food or on an empty stomach. With milk or water. Not with other medications etc… I actually had one tablet once that I think was some kind of calcium based drug. Then instructions were something like. Taken strictly with 250ml of water Absolutely not with milk. Not with any other medications. 1 hour before food. Patient must sit up and not lie down for 45 minutes after taking it. There was actually a list of 4 drugs which must not be taken whilst on this medication and I was on all 4 of them. They actually gave me this medication with my breakfast about 15 minutes after taking the rest of my pills, offered me a glass of milk to take it with and when I told her I was really tired as I hadn’t slept too well she said “ okay love I will close the blinds on the door and tell all the staff to stay out for a couple of hours and you lay down and get some sleep” I must add that this was not at Heath Towers but at the place I like to think of as Colditz, Llandough Hospital. I really hate that place and will fight tooth and nail not to go there if I can help it but sadly the chest team are based there and they have their main ward there too.
I guess this along with a few other mistakes with medications etc along the way is why I now self medicate whenever I come in. They are very understanding on C1 and allow me to do it with no questions apart from the controlled drugs I may be on at the time which is only understandable. The only time there has been any problems is when the doctors have decided to change any of my medications and they haven’t told me which is quite rare I must add but does happen. I would do my own IV’s if I could as I am an expert at them now having had so many over the years and the fact that I’m a nosey bugger and want to know the ins and out of everything so are always asking questions.
Right then I’m off. Is it me or do my blogs seem to have rather long since I come in here. Sorry.
I wish they wouldn’t do that, just open the door slightly and start talking to me as I never have my hearing aids in and rely a bit I supposed on lip reading to see what they are saying. A bit hard through a lump of wood
I think Penelope is back this week too I hope she is ready for me as I think there might be a few things I have to say to her. Sorry in advance Penelope dearest.
See Ya!!
Sunday, October 22
The Weekend!!
Well the weekend is well and truly here again and as you all know this place turns into a ghost town. I wish though that someone would tell the driver of the Heath Towers Express that he needn’t turn up so god damn early on the weekend as he’s here at 6am on the dot still, the same as during the week. There really is no need. I’ve found over the time I have had the Pleasure?? Of coming back and forth here on the ward that quite a number of nurses like to do a double shift as in working all day into the late evening which I guess could make the working week a little shorter or in fact get in a shift of overtime. I suppose this reflects the fact that it really is quiet here Saturday and Sunday as there are not many brave enough or more like it, stupid enough to do a double shift on a week day, they would need a week off to get over it ha ha.
I did actually end up missing my morning coffee yesterday as there wasn’t any here but I managed to get an extra couple during the day and night to make up for it. Apart from that nothing else went wrong yesterday so I guess I don’t have much to rant about, but I wouldn’t be surprised that if I dig deep enough I will come up with something.
I have to laugh. Each time I come in for some much needed treatment I always bring the essentials in with me like, The Laptop, The Digital TV Card and Aerial, My Pillow and sometimes My Quilt including Bob The Builder Cover, oh and things like PJ’s and Toiletries if there’s room. There is like this routine I suppose I have done so many times now it’s become automatic. It’s always set up the laptop first including the essential TV Card then chill out and worry about the rest later in the week Ha Ha!! I have been in so many times now I know exactly where to place the Aerial for the TV on the blinds and at what height the blinds need to be to get the best signal. This goes for both the single rooms and also for both 4 bedders. Every time I come in there are always a number of people that are fascinated that I can watch Digital TV Freeview through the laptop whilst I’m here and I spend countless hours demonstrating it etc. What I should do is buy a few and bring them in with me because I would sell out every time and I would be worth a packet by now. I recon I could have shifted about 50 or so already as they all say that they are going to go and get one as they are so impressed with it and to be honest I am overwhelmed by it. The quality and usability, never mind the price are unbelievable and to me it has been a godsend and has probably saved me hundreds if not thousands of pounds that I would have spent to watch the tiny 4 inch bedside TV with its 8 channels at £1.50 a day. I think Merlin has been talking about getting one for about a year now, I think I might just go and buy him one for Christmas just so that he doesn’t keep expecting the sales pitch every time he sees me.
Well as far as the health is concerned I can actually say I feel slightly better. I still have a bit of a sore throat to go along with the usual breathing problems and the fact that I am in pieces and struggling to breathe just getting up and walking the 2 metres to the ensuite toilet. I didn’t notice till just now that I can’t actually remember my chest being wheezy at all yesterday which is an extremely extreemely rare occurrence. I’ve been on this new anti-biotic for just 2 days and already it seems to have had some effect or it could actually be the Immunoglobulin that’s boosted my immune system enough to be able to fight that much harder. I don’t care really only that it is getting better that’s all.
Hopefully this is the shape of things to come. I know the physio’s have plans to get me walking up and down the ward next week so I had better conserve all my energy I readiness.
You’ll laugh at this…..
The slop stirrer who had sparked the whole argument earlier in the week about leaving plates hanging around all day etc is on this morning and she has just come in to collect the dishes from breakfast and turned around and said I heard you have been having problems with people not collecting your plates etc. The problem is there are a lot of new staff on at the moment and they don’t know what to do not that it is an excuse. You’ll be okay now as me and Sue (another Regular who spoils me rotten, she is a sweetie) are on so there won’t be any problems. HA HA HA HA!!!!!!!!
See Ya!!
I did actually end up missing my morning coffee yesterday as there wasn’t any here but I managed to get an extra couple during the day and night to make up for it. Apart from that nothing else went wrong yesterday so I guess I don’t have much to rant about, but I wouldn’t be surprised that if I dig deep enough I will come up with something.
I have to laugh. Each time I come in for some much needed treatment I always bring the essentials in with me like, The Laptop, The Digital TV Card and Aerial, My Pillow and sometimes My Quilt including Bob The Builder Cover, oh and things like PJ’s and Toiletries if there’s room. There is like this routine I suppose I have done so many times now it’s become automatic. It’s always set up the laptop first including the essential TV Card then chill out and worry about the rest later in the week Ha Ha!! I have been in so many times now I know exactly where to place the Aerial for the TV on the blinds and at what height the blinds need to be to get the best signal. This goes for both the single rooms and also for both 4 bedders. Every time I come in there are always a number of people that are fascinated that I can watch Digital TV Freeview through the laptop whilst I’m here and I spend countless hours demonstrating it etc. What I should do is buy a few and bring them in with me because I would sell out every time and I would be worth a packet by now. I recon I could have shifted about 50 or so already as they all say that they are going to go and get one as they are so impressed with it and to be honest I am overwhelmed by it. The quality and usability, never mind the price are unbelievable and to me it has been a godsend and has probably saved me hundreds if not thousands of pounds that I would have spent to watch the tiny 4 inch bedside TV with its 8 channels at £1.50 a day. I think Merlin has been talking about getting one for about a year now, I think I might just go and buy him one for Christmas just so that he doesn’t keep expecting the sales pitch every time he sees me.
Well as far as the health is concerned I can actually say I feel slightly better. I still have a bit of a sore throat to go along with the usual breathing problems and the fact that I am in pieces and struggling to breathe just getting up and walking the 2 metres to the ensuite toilet. I didn’t notice till just now that I can’t actually remember my chest being wheezy at all yesterday which is an extremely extreemely rare occurrence. I’ve been on this new anti-biotic for just 2 days and already it seems to have had some effect or it could actually be the Immunoglobulin that’s boosted my immune system enough to be able to fight that much harder. I don’t care really only that it is getting better that’s all.
Hopefully this is the shape of things to come. I know the physio’s have plans to get me walking up and down the ward next week so I had better conserve all my energy I readiness.
You’ll laugh at this…..
The slop stirrer who had sparked the whole argument earlier in the week about leaving plates hanging around all day etc is on this morning and she has just come in to collect the dishes from breakfast and turned around and said I heard you have been having problems with people not collecting your plates etc. The problem is there are a lot of new staff on at the moment and they don’t know what to do not that it is an excuse. You’ll be okay now as me and Sue (another Regular who spoils me rotten, she is a sweetie) are on so there won’t be any problems. HA HA HA HA!!!!!!!!
See Ya!!
Saturday, October 21
Royal Treatment!!
Well what a refreshing change after the pretty damn poor service I have had the last the few days. After my outburst at the nurse involved with not doing things like getting my hot pack and putting on the dressings that had been hanging around for hours and also for starting the Immunoglobulin so late causing me as you know a sleepless night, things seemed to change drastically today.
Usually, as you know because they have to wear mask when they come in (or at least I hope think that’s the reason, it might just be that they don’t like me??) they don’t come in unless they really have to which at times just makes the feelings of like being in prison a lot worse mind you there are times that I wish they didn’t come in such as before about 9am in the mornings would be nice, but today there seemed to be someone coming in every 30 minutes or so. They were saying things like just come in to see if you are okay or do you want anything at all? Or even just come I to see if you wanted a natter and that, which I found quite strange, came from probably the only nurse on that I had never met before so wouldn’t have much to say anyway ha ha ha… it started off okay but to be truthful by the end of the day it was quite sickening with being given the Royal Treatment and can’t wait to go back to complete isolation. I guess what made it worse was that because of the lack of sleep all I wanted to do was to try and at least get a few hours in during the day to try and catch up but they were back and foe so much this was not an option.
I think that the nurse who had rightly bore the brunt of my ranting and raving earlier on as she was the one who it was about, thought that I might have a problem with her personally and did say that she was on in the morning too and did I want to have another nurse looking after me instead of her. I just thought to myself, “You haven’t really been listening to me have you because at no time did I indicate that and along with the particular problems that directly lay with her I went on about the general problems with associated with being locked on here”. I did say no I don’t want another nurse at all that is not the point and besides I thought that as I had brought all this up she will probably be up to speed tomorrow and I might get things done.
After a pretty non eventful day I went off to sleep quite early actually, around 10.30pm and pretty much managed to sleep right through. Even the night staff were on their toes last night and I had my IV Anti-biotics really early and had a cup of coffee too which was nice. Aint it strange, when I’m home I don’t drink coffee or tea or anything hot actually but when I come in here I really look forward to my cuppa 4 times a day. I know I’m a sad git!!! Ohhhh look out the slop stirrer has just asked if I want a cuppa and after toddling off to get my order of a Latte please with a sprinkling of Chocolate on top,(That’ll be the day), she has just come back saying “ Sorry I haven’t got any coffee yet until I go down to the office”. You What. That is a basic ingredient in the making of tea and coffee and you should have some on the trolley before you start your rounds.
I feel another blog of dissatisfaction coming on look out.
I’m off to start it now.
See Ya!!
Usually, as you know because they have to wear mask when they come in (or at least I hope think that’s the reason, it might just be that they don’t like me??) they don’t come in unless they really have to which at times just makes the feelings of like being in prison a lot worse mind you there are times that I wish they didn’t come in such as before about 9am in the mornings would be nice, but today there seemed to be someone coming in every 30 minutes or so. They were saying things like just come in to see if you are okay or do you want anything at all? Or even just come I to see if you wanted a natter and that, which I found quite strange, came from probably the only nurse on that I had never met before so wouldn’t have much to say anyway ha ha ha… it started off okay but to be truthful by the end of the day it was quite sickening with being given the Royal Treatment and can’t wait to go back to complete isolation. I guess what made it worse was that because of the lack of sleep all I wanted to do was to try and at least get a few hours in during the day to try and catch up but they were back and foe so much this was not an option.
I think that the nurse who had rightly bore the brunt of my ranting and raving earlier on as she was the one who it was about, thought that I might have a problem with her personally and did say that she was on in the morning too and did I want to have another nurse looking after me instead of her. I just thought to myself, “You haven’t really been listening to me have you because at no time did I indicate that and along with the particular problems that directly lay with her I went on about the general problems with associated with being locked on here”. I did say no I don’t want another nurse at all that is not the point and besides I thought that as I had brought all this up she will probably be up to speed tomorrow and I might get things done.
After a pretty non eventful day I went off to sleep quite early actually, around 10.30pm and pretty much managed to sleep right through. Even the night staff were on their toes last night and I had my IV Anti-biotics really early and had a cup of coffee too which was nice. Aint it strange, when I’m home I don’t drink coffee or tea or anything hot actually but when I come in here I really look forward to my cuppa 4 times a day. I know I’m a sad git!!! Ohhhh look out the slop stirrer has just asked if I want a cuppa and after toddling off to get my order of a Latte please with a sprinkling of Chocolate on top,(That’ll be the day), she has just come back saying “ Sorry I haven’t got any coffee yet until I go down to the office”. You What. That is a basic ingredient in the making of tea and coffee and you should have some on the trolley before you start your rounds.
I feel another blog of dissatisfaction coming on look out.
I’m off to start it now.
See Ya!!
Friday, October 20
smelling mistkes!!
I know that my spelling is never that good and to be honest the spellchecker is rubbish on here but I feel like I should apologise in advance as I think it will be worse than usual today due to trying to write this through tired squinty eyes after a long sleepless night at Heath Towers. For once it was not my fault either which is annoying.
As I tried to explain fairly clearly I hope in the last blog they have decided on this new approach to my treatment and part of this involves giving me a good dose of Immunoglobulin to try and boost my immune system. The preferred method is via IV and it’s usually around 3 or 4 bottles but was 4 on this occasion. The first dose is given really slowly as there are some bad side effects such as lowering blood pressure and raising temperature amongst other things. I know when Merlin and his merry men and women came a visiting in the morning(and not at lunchtime for a change!!) that they had written it up for me to have yesterday and the nurse in control of my destiny had ordered it so it was a case of just waiting for the blood bank to pull their finger out and deliver it. Well bugger me it finally turned up at about 8.15pm last night meaning it was to be a long night for me. One of the problems with having this is that due to the side effects I mentioned they are in and out like yoyo’s taking your blood pressure and temp etc etc and not even I have managed to sleep through that experience sadly. I had asked the nurse who had connected me up to Metal Mickey with the pump from hell on it. (this is a drip stand that has a pump sort of hanging off it through which they run the various IV’s that need accurate delivery rates etc) how many have I got to have and she said they’ve only written you up for 10mg which is just one bottle. Great I thought at least I won’t have to put up with this constant grinding noise coming from the pump and the constant interruptions from the nurses to check if I was still alive all night. Well, about 10.30 the nurse on duty for the night came in wielding another bottle of poison to my dismay. I asked how many I have got to have and was told I was having 3 large ones and one half bottle. Nooooooooooooooooo!!!!!!!!!!!!! Well I thought to myself I hope there is something good to watch on the telly all night as I was not going to get any sleep. Why me, what have I done to upset everyone??? However much I could do with having this poison or should I say amber nectar really as it is supposed to be doing me good, surely they know how long it takes and the hassle involved etc etc and might it have been better to wait till the morning to start it instead of that time of night. In some fairness to the nurse who had originally started it off she thought it was just the one bottle which wouldn’t have been so bad although in saying that it’s a bit scary that she didn’t know that I was to have more because as far as I know they have to ring down for the rest of the bottles one by one when they are needed, a bit like they do with Blood as this is a blood product after all and she would have just left it at one I guess and no one would have been any wiser.
It must have been about 4am by the time I managed to drop off and they were back in for more poking and prodding at 6.15. That was nice of them I thought, very thoughtful. Well that was it no sooner that one comes in they are followed to be entourage that is the Daily Heath Towers Express, the only train I know of that you can set your clock by and in all the times I have been in it is never late and never ever cancelled.
So I’m sat here, well let me correct that, I’m lying here writing this trying my best to see the screen through eyes that look like they actually died about 10 years ago and are about as useful too.
On a lighter note a package arrived via my mother yesterday. It was covered in wild west labels and smelt of Spicy Cajun Cooking, well actually it was in a Tesco’s carrier bag and smelt of the delicious nice warm Clarks Pie my mother had managed to get past the border guard. When I opened it up though three little head popped out, well one large one and two little ones to be truthful. Three new Ducks had decided to come to stay. They looked tired after their long journey from the Wild West where they had been cowboys and Indians but have decided to come and live out their days with me at Duck Haven. I’m sure they will settle down nicely and the others will be so interested in all the stories these three must have about their life in the outback. It’s so nice to see the three of them getting on together after years of fighting one another, sort of gives me hope for humanity after all.
Right I am going to try and get a bit of sleep in now I have the chance, I have put out the do not disturb sign and put a wedge under the door to stop them coming in too so I should be okay for a little while anyhow.
See Ya!!
As I tried to explain fairly clearly I hope in the last blog they have decided on this new approach to my treatment and part of this involves giving me a good dose of Immunoglobulin to try and boost my immune system. The preferred method is via IV and it’s usually around 3 or 4 bottles but was 4 on this occasion. The first dose is given really slowly as there are some bad side effects such as lowering blood pressure and raising temperature amongst other things. I know when Merlin and his merry men and women came a visiting in the morning(and not at lunchtime for a change!!) that they had written it up for me to have yesterday and the nurse in control of my destiny had ordered it so it was a case of just waiting for the blood bank to pull their finger out and deliver it. Well bugger me it finally turned up at about 8.15pm last night meaning it was to be a long night for me. One of the problems with having this is that due to the side effects I mentioned they are in and out like yoyo’s taking your blood pressure and temp etc etc and not even I have managed to sleep through that experience sadly. I had asked the nurse who had connected me up to Metal Mickey with the pump from hell on it. (this is a drip stand that has a pump sort of hanging off it through which they run the various IV’s that need accurate delivery rates etc) how many have I got to have and she said they’ve only written you up for 10mg which is just one bottle. Great I thought at least I won’t have to put up with this constant grinding noise coming from the pump and the constant interruptions from the nurses to check if I was still alive all night. Well, about 10.30 the nurse on duty for the night came in wielding another bottle of poison to my dismay. I asked how many I have got to have and was told I was having 3 large ones and one half bottle. Nooooooooooooooooo!!!!!!!!!!!!! Well I thought to myself I hope there is something good to watch on the telly all night as I was not going to get any sleep. Why me, what have I done to upset everyone??? However much I could do with having this poison or should I say amber nectar really as it is supposed to be doing me good, surely they know how long it takes and the hassle involved etc etc and might it have been better to wait till the morning to start it instead of that time of night. In some fairness to the nurse who had originally started it off she thought it was just the one bottle which wouldn’t have been so bad although in saying that it’s a bit scary that she didn’t know that I was to have more because as far as I know they have to ring down for the rest of the bottles one by one when they are needed, a bit like they do with Blood as this is a blood product after all and she would have just left it at one I guess and no one would have been any wiser.
It must have been about 4am by the time I managed to drop off and they were back in for more poking and prodding at 6.15. That was nice of them I thought, very thoughtful. Well that was it no sooner that one comes in they are followed to be entourage that is the Daily Heath Towers Express, the only train I know of that you can set your clock by and in all the times I have been in it is never late and never ever cancelled.
So I’m sat here, well let me correct that, I’m lying here writing this trying my best to see the screen through eyes that look like they actually died about 10 years ago and are about as useful too.
On a lighter note a package arrived via my mother yesterday. It was covered in wild west labels and smelt of Spicy Cajun Cooking, well actually it was in a Tesco’s carrier bag and smelt of the delicious nice warm Clarks Pie my mother had managed to get past the border guard. When I opened it up though three little head popped out, well one large one and two little ones to be truthful. Three new Ducks had decided to come to stay. They looked tired after their long journey from the Wild West where they had been cowboys and Indians but have decided to come and live out their days with me at Duck Haven. I’m sure they will settle down nicely and the others will be so interested in all the stories these three must have about their life in the outback. It’s so nice to see the three of them getting on together after years of fighting one another, sort of gives me hope for humanity after all.
Right I am going to try and get a bit of sleep in now I have the chance, I have put out the do not disturb sign and put a wedge under the door to stop them coming in too so I should be okay for a little while anyhow.
See Ya!!
Wednesday, October 18
A New Dawn!!
Well after a pretty uneventful day all in all it has actually turned into a quite positive day in the end.
After a day of nothingness really where to be honest apart from the over the top special service provided by the slop stirrers ( thanks Dale for giving them a kick up the bum) and the visit from the physio for the usual daily, lets see just how much of a mess we can make of him, session not a lot to report. That is until this evening.
I had a rather interesting visit from one of the newest Registrar’s a lovely bubbly Irish lady who looks like she has just stepped out of a Come Visit Ireland commercial all fresh and wavy hair ha ha..
Well over the last few days she has mentioned a few things as regards treatments that might have some benefits for me which has sparked a new found feeling that maybe just maybe she might be onto a winner in some way or another and lets face it when things get to the level that they have done with me you sort will try just about anything that might help. She explained to me that as usual I had been the centre of attention at the weekly Pipe Smoking Convention where all the Elders and their underlings attempt to put the world to rights as well as try and come up with some ideas as to how to treat patients while they’re at it.
Some of the symptoms especially those connected with the Bronchiecsasis which I now have on my right lung as well as my left are very similar to those shown by people suffering from Cystic Fibrosis which I already knew from the past because the physio treatment has been the same, lots of chest compression exercises etc to try and remove the build up of phlegm from the lungs. This is not a new approach or in fact a miracle diagnosis but what follows is certainly not something that has been discussed or tried with myself certainly and that is, along with the physio aspect of the treatment they are going to treat me medically the same as if I were a cystic fibrosis patient too. This has in fact already started as they are not hanging around in that they have changed over my Anti-biotic to another Penicillin based one that should cover a lot more bugs that may be lurking in there. I guess the down side of this is that they like to give around 14 days worth so it looks like I may be here a while yet which to be honest I was half expecting anyhow. Along with this they are going to give me a dose of Immunoglobulin which acts as a kind of boost to your immune system helping it to fight off infections by itself and not rely on Merlin’s Potions so much. The other major part of this new approach is quite a new experience for me too and I think might just be the key to whether this works or not. That is, they intend to bring me back in regularly to both top up the Anti-biotics via IV and also to top up the Immunoglobulin and all when I am well and not wait till I end up coming in with some infection or other. Shifting the emphasis on being Pro-Active instead of the usual Re-Active which will be refreshing change I think and am looking forward to it very optimistically. The way I look at it is that I was going to be coming in anyway as I said for one infection or another so the actual visiting will not be any different its just the thought of being well when I come in that is appealing to me.
So at last maybe there is something positive starting to happen and who knows it might just work.
So in the words of a dear friend Onwards & Upwards.
See Ya!!
After a day of nothingness really where to be honest apart from the over the top special service provided by the slop stirrers ( thanks Dale for giving them a kick up the bum) and the visit from the physio for the usual daily, lets see just how much of a mess we can make of him, session not a lot to report. That is until this evening.
I had a rather interesting visit from one of the newest Registrar’s a lovely bubbly Irish lady who looks like she has just stepped out of a Come Visit Ireland commercial all fresh and wavy hair ha ha..
Well over the last few days she has mentioned a few things as regards treatments that might have some benefits for me which has sparked a new found feeling that maybe just maybe she might be onto a winner in some way or another and lets face it when things get to the level that they have done with me you sort will try just about anything that might help. She explained to me that as usual I had been the centre of attention at the weekly Pipe Smoking Convention where all the Elders and their underlings attempt to put the world to rights as well as try and come up with some ideas as to how to treat patients while they’re at it.
Some of the symptoms especially those connected with the Bronchiecsasis which I now have on my right lung as well as my left are very similar to those shown by people suffering from Cystic Fibrosis which I already knew from the past because the physio treatment has been the same, lots of chest compression exercises etc to try and remove the build up of phlegm from the lungs. This is not a new approach or in fact a miracle diagnosis but what follows is certainly not something that has been discussed or tried with myself certainly and that is, along with the physio aspect of the treatment they are going to treat me medically the same as if I were a cystic fibrosis patient too. This has in fact already started as they are not hanging around in that they have changed over my Anti-biotic to another Penicillin based one that should cover a lot more bugs that may be lurking in there. I guess the down side of this is that they like to give around 14 days worth so it looks like I may be here a while yet which to be honest I was half expecting anyhow. Along with this they are going to give me a dose of Immunoglobulin which acts as a kind of boost to your immune system helping it to fight off infections by itself and not rely on Merlin’s Potions so much. The other major part of this new approach is quite a new experience for me too and I think might just be the key to whether this works or not. That is, they intend to bring me back in regularly to both top up the Anti-biotics via IV and also to top up the Immunoglobulin and all when I am well and not wait till I end up coming in with some infection or other. Shifting the emphasis on being Pro-Active instead of the usual Re-Active which will be refreshing change I think and am looking forward to it very optimistically. The way I look at it is that I was going to be coming in anyway as I said for one infection or another so the actual visiting will not be any different its just the thought of being well when I come in that is appealing to me.
So at last maybe there is something positive starting to happen and who knows it might just work.
So in the words of a dear friend Onwards & Upwards.
See Ya!!
shape up or ship out!!
Now as you all well know I am quite a laid back sort of guy and although I have the rant and rave I am actually not that out spoken at all. In fact I quite rarely actually speak up for myself for one reason or another which I know has probably ended up not getting the sort of attention and treatment I deserve. I know that this alone really winds Judith up but thankfully she has always come to the rescue when it has been needed not that this is ideal.
There are a number of things that have happened or more accurately not happened whilst I’ve been in Heath Towers this time. I am not talking of life or death type things and in some ways not even directly connected to my treatment but to be honest added together they have begun to really wind me up and make me start to demand things be done.
I suppose I noticed it a couple of days ago. When the Slop Stirrer came around with the feeble offering at tea time, the tray and dirty plates etc were still on the window sill from lunchtime. Then later on, usually around 6.30 – 7pm they come around with a cuppa which is the last you will get unless you talk very very nicely to the night staff who if they have time will make you one, well they just did not come and by the time I had noticed it was too late they had gone home. Well the next day came and I thought I would keep an eye on it today. Well I am sorry to say that by the time the night staff came in there was the breakfast dishes, the lunch dishes and the teatime dishes all neatly lined up on the window sill waiting to be collected and doubtlessly growing all sorts of nasty things whilst they are waiting. Now I find this just not acceptable at all as well as not being hygienic. The problem seems to be with one particular slop stirrer in particular although others have also done the same. This person just really does not like putting on the required face mask in order to come into the room even though it is only for about 10 seconds and to make it worse she is so nice to me and always stops for a natter whenever I have seen her out and about so its not as if I have upset her or anything. Well enough is enough I actually told the nurse in charge that I was not happy and wanted something done about it. If not then I will demand to see the Catering supervisor. I had similar problems on other occasions when I have been in here and they have actually not even offered me food at all some days and the excuse was that the slop stirrer was new and didn’t know the ward layout. Well you got eyes haven’t you????
As if this wasn’t enough I had a pretty miserable day I’m sorry to say on a nursing point of view too. Now as I have said numerous times I know the poor nurses on the ward and the day unit hardly have time to blink let alone run around at my every whim but the last few days seem to have been a nightmare. I think maybe with the food thing happening at the same time has made this more of a problem but hell it is a problem that I need sorting.
I had a Pic-Line put in before I came in here so that they can give me the required poisons and also steal my Red Nectar whenever they wanted without the need to throe javelins at me every 5 minutes. Seeing as I have only the 1 vein left that is accessible and that’s the one they put the Pic-Line in you can understand me when I say that I want to try my damn hardest and do everything that is recommended to make sure it continues to work properly as the alternative is very very bleak. The main recommendation to maintain a good flow of blood through it is to put on Hot Packs, which are just small bags of this Blue Gooo that can either be warmed in the Microwave or in a jug of water etc. They need to be put on 4 times a day for 20 minutes at a time although the more you do it I always find the better so aim for around 5 or 6 at home. Well I started asking at around 10am if one could be warmed up for me please bearing in mind it takes probably all of around 2.5 minutes in total to do including walking to the kitchen and back. The original answer was I am a bit busy at the moment and will do it when I have a spare minute. Fair enough I don’t want you to drop everything for me. Well after this I must have asked about 6 or 7 times for it to be done sort of every 30 minutes or so still with no success. All I kept getting was I am and have been very busy this morning. WELL WHOPY DOO!!! I thought. THE LAST TIME I LOOKED I WAS A PATIENT TOO AND NOT JUST SOME STRANGER WHO HAD WALKED IN OFF THE STREETS FOR SOME ATTENTION!!!!! It’s time for jonny5 to come alive I think and start to demand attention. To make things worse the nurse involved was complaining that the Pic-Line was really slow at giving away my precious Red Gold which I hastily pointed out that if she had bothered to give me a hot pack then that would have sped this up 10 fold so it’s not just for my benefit it’s in their interest to look after it too.
I think they will be seeing a drastic change to chilled out laid back john as I will have to begin standing up for myself.
Okay then that’s better now I got that off my chest.
Talking about chests mine was a bit more rattly last night than of late. I think it might be down to the fact that the physio had done some chest percussions earlier on to try and bring up what is lurking in the bottom of my lungs which is the first time since coming and as a result has probably dislodged a bit that was refusing to make the complete escape to freedom or into a little plastic tube to be interrogated by various Bug Doctors. Does the Geneva Convention cover Bugs caught in wartime???
I might, as I know there are a few people who I have spoken too recently who are new to reading this, put on an update about the Names of various Characters involved in my interpretation of War & Peace just so they can at least try an keep up.
Oh yeah, I will when I get out too try and post a few recent piccy’s of a rather important wedding that took place just before I came in here. It was between two very much in love Ducks who you might remember. Bud & Shirley. It was simply a quacking day!!!!
See Ya!!
Tuesday, October 17
No Space!!
Not a bad night for me last night. I managed to get a little sleep at least in between the Various interruptions for the usual stuff like IV Connections and drugs and the odd trip to the loo as one thing I have found since this skin condition got a bit worse is that all my other Internal organs are obviously fighting for space in there too. So as a result I find I am making more frequent trips to the loo and also I can’t eat the large meals that I used to, well not if I want to breathe as well. This cutting down on food you would think would be a good thing as it’s a chance to try and control my weight gain brought on mainly by the constant Steroid intake but I have not lost the ferrous appetite though so I find I some days I seem to be eating almost constantly all day long. My stomach seems to fill up pretty quickly and along comes the full feeling but about 30 minutes later I could eat the same amount all over again and feel like I haven’t actually eaten anything. I have always tried to have a variety off relatively healthy snacks around but as I’m not really a fruit person I have to admit I fallen head over heals with the joys of Walkers Crisps. I am making my way through the range slowly. I was quite heavily into Bacon flavour for a few weeks until about 2 weeks or so then it has been Prawn Cocktail which incidentally taste nothing like prawn cocktail at all but I do like the sharpness of them as well as the fact they stink out the Day Centre whenever I am down there which is always a laugh and come to think of it might actual get me seen a bit quicker if I was to open a packet because they might just want to get rid of me quick Ha Ha Ha!!! I have found that All through this my diet needs have been very much a roller coaster ride like the rest of the treatments etc and my taste buds sometimes change on a daily basis which is a real pain when it comes to shopping for such things hence Judith and myself have come up with a pretty foolproof system whenever I am staying at the convenience of Heath Towers, I text her each day or night as long as its before 10.30 in the morning with whatever I fancy that particular day and she stops at some point on the way in to get it. That way we don’t tend to build up stock piles of stuff like we used too as Judith did quite a few times, moreso when I really wasn’t eating much at all and I guess she was just glad to see me eating something, whenever I asked her to get me something she would come back with a pile of them only for me to go off them a day or so later leaving us with jars and packets of stuff all over the place. I’m not so bad at the moment as between us all at least the crisps would get eaten by someone, unless anyone want 120 packets of Walkers Bacon Crisps Ha Ha Ha!!!
Right on a serious note, Merlin flew in at his usual inconvenient time just as they had served up lunch which was a juicy Roast Lamb Dinner. He had the result from the CT Scan the other day which was sort of good and bad news really. It was good in that it didn’t show any major sites of infection but it did show up an area on the bottom of my right lung that showed signs of Bronchiexsasis (Spelling is bad sorry) with some fluid there too which would probably be caused by this because my lungs haven’t been able to clear it through normal means. This would somewhat explain why none of the antibiotics have had any effect on the problems of late as it is not an infection but more a condition whereby the tubes inside your lungs are not working properly and failing to remove any phlegm etc from building up etc.. It can be treated with some intense physio which is good although his next move now is to contact the Chest team at Llandough Hospital to find out what they would suggest. Whether I need and Brochoscope or are they happy to proceed with the physio and also whether it can be done her or would I have to move over there which as many of you know I have great reservations with doing. My general feelings are that unless they really expect to find anything new from the bronch then I’d rather they didn’t do it and I can’t really see why they couldn’t do the physio as when I mentioned it later on today to the ward based physio she knew exactly what I meant when I talked about the treatment and they can do it here as its more a case of hand on beating of my chest whilst laying in various positions etc and therefore I would feel a lot more comfortable staying here. They will continue the antibiotics as a precaution till Wednesday or Thursday by then they will hopefully have contacted Dr Gelder to see what to do next and then I suppose we can look at getting my freedom back and making a mad dash for escape. Better start digging the tunnel then I guess.
Now where did I put that spade???
See Ya!!
Right on a serious note, Merlin flew in at his usual inconvenient time just as they had served up lunch which was a juicy Roast Lamb Dinner. He had the result from the CT Scan the other day which was sort of good and bad news really. It was good in that it didn’t show any major sites of infection but it did show up an area on the bottom of my right lung that showed signs of Bronchiexsasis (Spelling is bad sorry) with some fluid there too which would probably be caused by this because my lungs haven’t been able to clear it through normal means. This would somewhat explain why none of the antibiotics have had any effect on the problems of late as it is not an infection but more a condition whereby the tubes inside your lungs are not working properly and failing to remove any phlegm etc from building up etc.. It can be treated with some intense physio which is good although his next move now is to contact the Chest team at Llandough Hospital to find out what they would suggest. Whether I need and Brochoscope or are they happy to proceed with the physio and also whether it can be done her or would I have to move over there which as many of you know I have great reservations with doing. My general feelings are that unless they really expect to find anything new from the bronch then I’d rather they didn’t do it and I can’t really see why they couldn’t do the physio as when I mentioned it later on today to the ward based physio she knew exactly what I meant when I talked about the treatment and they can do it here as its more a case of hand on beating of my chest whilst laying in various positions etc and therefore I would feel a lot more comfortable staying here. They will continue the antibiotics as a precaution till Wednesday or Thursday by then they will hopefully have contacted Dr Gelder to see what to do next and then I suppose we can look at getting my freedom back and making a mad dash for escape. Better start digging the tunnel then I guess.
Now where did I put that spade???
See Ya!!
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