Should have expected this I suppose - cold turkey on sleeping pills will not give you 7.5 hrs of morphic bliss. So tonight up to bed at 10.30 totally crackered 12.30 wide awake and fidgeting so I sneaked out of bed for a cup of bovril and a bit of this.
Second session at Guys Hospital today went like a dream left here 10am arrived 1130 London Bridge filled my face with M & S food- went and got hooked up and a well hydrated blood stream meant that I was able to have 1,5 litres of blood processed in less than two hours and be home in East Sussex for 1530hrs. If interested look up photopheresis in wikipedia for a short but concise explanation. Still have hypertension - all the nurses query this at Kings and Guys and tbh I was a little concerned until I started looking at contra-indications on my meds. Pretty much most of them raise the blood pressure and to top it all so does photo pheresis - so I don't have that ticking time bomb feeling any more and know that BP will gradually reduce as meds are reduced.
Reading my discharge papers today and was surprised to find that when admitted to Kings I had CMV levels of 360000 not the 110000 that I thought so a bit bad really. Been a learning experience the past couple of days - three weeks of sitting on my arse doing nothing has really atrophied my system. stairs are a struggle - at both ends of my journey today commuters were streaming past at light speed - even the old boys - and going upstairs last night carrying hot drinks, my hamstrings collapsed and I spilt them everywhere. So its going to be plenty of dog walkies at a gentle pace to get me legs going again and of course a couple of weeks of crappy sleep until the zopiclone gets out of my system.
Thursday 27 March 2014
Tuesday 25 March 2014
T + 400. Right lets have another go at this recovery business then
Well this may be the last extended entry I make for a while. Still sleepless, - I'll plug away at this 'til the eyes start to droop. I was able to convince the specialists in here that the serious sounding viruses that the swabs had picked up weren't bothering me - a cough and a cold - no biggie. It is only three weeks since I was admitted although it seems longer, but I have to give credit to the great work done by the consultant and registrars who have looked after me. If I had a bit more sense I would have listened to Dr Victoria Potter sooner and checked myself in when she originally suggested.
As I stated at the end of yesterday's entry, I had some great news. Looks like the IV Ganciclovir has done the business on my Cyto Megalo Virus lurgie and dropped the counts from 110,000 when I was admitted (bad) to its current count of 6,000 which is good enough for me to be sent home. So tonight is my last night in Kings, very much looking forward to going home to our village to be with Jeannette and Milo again and hopefully be the kind of person they'll want to have around them rather the short fused miserable bugger that I was for much of the last year.
As always I don't want to jinx things by speaking too soon, but I'm hopeful now that with the onset of spring I can become more active and start to get some serious recovery and fitness going on. I've got most of the first stage out of the way in that I don't feel like shite all the time which should make me much more amenable to be around and I've started planning ahead for things I'd like to do this spring/summer which I was certainly in no mood or condition to do this time last year.
The plan for tomorrow then is brekkers, IV infusion and meds here then shoot over to Guys Hospital in a taxi to get the UV treatment done on my blood, hopefully finish there by 1500hrs then train home to family. Ridiculously excited to be going home and get settled again.
If things go to plan, I'll be outside living life again and will not be blogging anything like as often - the main reason I've kept it going thus far is because it's so damn boring being in hospital that it occupies the mind. But I will update as and when anything of interest to fellow AA/MDS sufferers occurs in case it helps you anticipate what to expect.
I've sort of stumbled into learning about this disease area in the same way that a toddler learns bump collision control ie by toodling along doing my own thing until I hit a wall, when things go wrong and knock me on my arse, I learn from it get up and carry on - and the thing I have learnt most recently is not to try and tough things out. I keep forgetting that everything has changed since my transplant and that I don't have an immune system - hence I cannot be blase about disease control measures.
Probably the only reason that I got away without being more ill last year is because we live in a very small community and I don't come into contact with anything like the number of people I used to when I worked in London and commuted on a daily basis. I will be attempting the next stage of my recovery with a little more caution than this time last year - starting with sensible eating. The chocolate and crisps thing has got to go!
Hopefully I've outlined some strategies for coping with spending extended periods of time in an isolated hospital room. As I believe I mentioned last year I found a laptop invaluable in helping me to pass the time - buy some net access from your Hospital network access provider. Whether for Facebook, blogging, streaming music or Skype it's your window on the outside world and helps you to feel engaged with what going on outside. This time in I also studiously avoided TV- didn't watch it once in three weeks which I found quite liberating actually. Filled it with a combination of Radio 4 and music. Skype is great as it allowed me to spend time with Jeannette without her having to spend 2 hours each way travelling to get here. Often we would just leave it open as we were getting on with something else as it's nice company just to have that other persons voice in the room. There will be times when you feel a little down and sorry for yourself - I think this only natural and my advice would be to let those feelings have their time and get them out if you feel like a bit of a cry have one, you'll always feel cleansed and refreshed afterwards. sleeping patterns seem to be problem for me - so whatever helps you - use it.
I found that I managed better this time without lots of visitors this will obviously be your own subjective decision.
At time of writing the blog is getting about 100 hits a day from variously the UK, USA, Europe, Australia, Canada, Latvia, Ukraine and Russia - if it hasn't informed I'd hope that it has at least entertained.
Thanks for reading and stay well.
Nick.
As I stated at the end of yesterday's entry, I had some great news. Looks like the IV Ganciclovir has done the business on my Cyto Megalo Virus lurgie and dropped the counts from 110,000 when I was admitted (bad) to its current count of 6,000 which is good enough for me to be sent home. So tonight is my last night in Kings, very much looking forward to going home to our village to be with Jeannette and Milo again and hopefully be the kind of person they'll want to have around them rather the short fused miserable bugger that I was for much of the last year.
As always I don't want to jinx things by speaking too soon, but I'm hopeful now that with the onset of spring I can become more active and start to get some serious recovery and fitness going on. I've got most of the first stage out of the way in that I don't feel like shite all the time which should make me much more amenable to be around and I've started planning ahead for things I'd like to do this spring/summer which I was certainly in no mood or condition to do this time last year.
The plan for tomorrow then is brekkers, IV infusion and meds here then shoot over to Guys Hospital in a taxi to get the UV treatment done on my blood, hopefully finish there by 1500hrs then train home to family. Ridiculously excited to be going home and get settled again.
If things go to plan, I'll be outside living life again and will not be blogging anything like as often - the main reason I've kept it going thus far is because it's so damn boring being in hospital that it occupies the mind. But I will update as and when anything of interest to fellow AA/MDS sufferers occurs in case it helps you anticipate what to expect.
I've sort of stumbled into learning about this disease area in the same way that a toddler learns bump collision control ie by toodling along doing my own thing until I hit a wall, when things go wrong and knock me on my arse, I learn from it get up and carry on - and the thing I have learnt most recently is not to try and tough things out. I keep forgetting that everything has changed since my transplant and that I don't have an immune system - hence I cannot be blase about disease control measures.
Probably the only reason that I got away without being more ill last year is because we live in a very small community and I don't come into contact with anything like the number of people I used to when I worked in London and commuted on a daily basis. I will be attempting the next stage of my recovery with a little more caution than this time last year - starting with sensible eating. The chocolate and crisps thing has got to go!
Hopefully I've outlined some strategies for coping with spending extended periods of time in an isolated hospital room. As I believe I mentioned last year I found a laptop invaluable in helping me to pass the time - buy some net access from your Hospital network access provider. Whether for Facebook, blogging, streaming music or Skype it's your window on the outside world and helps you to feel engaged with what going on outside. This time in I also studiously avoided TV- didn't watch it once in three weeks which I found quite liberating actually. Filled it with a combination of Radio 4 and music. Skype is great as it allowed me to spend time with Jeannette without her having to spend 2 hours each way travelling to get here. Often we would just leave it open as we were getting on with something else as it's nice company just to have that other persons voice in the room. There will be times when you feel a little down and sorry for yourself - I think this only natural and my advice would be to let those feelings have their time and get them out if you feel like a bit of a cry have one, you'll always feel cleansed and refreshed afterwards. sleeping patterns seem to be problem for me - so whatever helps you - use it.
I found that I managed better this time without lots of visitors this will obviously be your own subjective decision.
At time of writing the blog is getting about 100 hits a day from variously the UK, USA, Europe, Australia, Canada, Latvia, Ukraine and Russia - if it hasn't informed I'd hope that it has at least entertained.
Thanks for reading and stay well.
Nick.
T + 399. Upgraded and Goodnight Vienna
Had a visit from a serious faced nurse last night who pulled up a chair next to my bed and said
"I have some news for you on the results of your recent swab tests" (nose and throat)
Me thinks: OOOeerr
" The results show positive for two further viruses - Rhinovirus and RSV (Human Respiratorial Syncytial virus)
OOOeerr x 2
"Because of this we have to tranfer you to another ward due to the risk of cross infection and anybody who enters your room from now on will need to wear a facemask"
Me: " So as well as having VRE, I now have RV and RSV?"
"Yes"
"What are they then?"
"Well the Rhinovirus is a cold bug and RSV is normally a bronchitis bug found in children" (figures)
Me: (relief) "So it's a cough and a cold then? It shouldn't keep me in here?"
She's non-commital. I think I'll be able to get released.
Upshot is at 1am I get moved from Waddington Ward to Davidson Ward. Something to do with Waddington being a positive pressure environment and Davidson not. Didn't really understand but less likely I'll infect other people from here. So now on Davidson ward room 14. Will be asking the consultant this afternoon about the impact of this - suspect not much, so I've got a cough and cold big deal. Been living with our own little germ factory Milo at home for a year - and living out in the sticks I would've thought I'm much less likely to come into contact with bugs than staying in here.
I'm feeling that I may take matters into my own hands and discharge myself if the CMV levels are right down to an acceptable level.
Room is slightly larger YAY but window has view of concrete wall and I don't think I will see sunlight, bonus though is the shower super high powered and really hot, I virtually slid out under the door when finished this morning - so relaxing. Just as well that I'm off TV as someone has nicked the r/c from the room.
UPDATE:
CMV count has dropped from 64000 to 6000. yeehaw! One more night in Kings then a session of Photo pheresis over at Guys Hospital then I'm on the train home on Wednesday afternoon couldn't be happier. Here's to recovery (again).
"I have some news for you on the results of your recent swab tests" (nose and throat)
Me thinks: OOOeerr
" The results show positive for two further viruses - Rhinovirus and RSV (Human Respiratorial Syncytial virus)
OOOeerr x 2
"Because of this we have to tranfer you to another ward due to the risk of cross infection and anybody who enters your room from now on will need to wear a facemask"
Me: " So as well as having VRE, I now have RV and RSV?"
"Yes"
"What are they then?"
"Well the Rhinovirus is a cold bug and RSV is normally a bronchitis bug found in children" (figures)
Me: (relief) "So it's a cough and a cold then? It shouldn't keep me in here?"
She's non-commital. I think I'll be able to get released.
Upshot is at 1am I get moved from Waddington Ward to Davidson Ward. Something to do with Waddington being a positive pressure environment and Davidson not. Didn't really understand but less likely I'll infect other people from here. So now on Davidson ward room 14. Will be asking the consultant this afternoon about the impact of this - suspect not much, so I've got a cough and cold big deal. Been living with our own little germ factory Milo at home for a year - and living out in the sticks I would've thought I'm much less likely to come into contact with bugs than staying in here.
I'm feeling that I may take matters into my own hands and discharge myself if the CMV levels are right down to an acceptable level.
Room is slightly larger YAY but window has view of concrete wall and I don't think I will see sunlight, bonus though is the shower super high powered and really hot, I virtually slid out under the door when finished this morning - so relaxing. Just as well that I'm off TV as someone has nicked the r/c from the room.
UPDATE:
CMV count has dropped from 64000 to 6000. yeehaw! One more night in Kings then a session of Photo pheresis over at Guys Hospital then I'm on the train home on Wednesday afternoon couldn't be happier. Here's to recovery (again).
Monday 24 March 2014
T + 398. The aftermath...a couple of normal days I hope.
24/03/2014
Haemoglobin: TBA (range 120-150)
WBC: TBA (range 3.5 - 9.0)
Platelets: TBA (range 150 - 400)
Neutrophils: TBA (range 2 - 7.5)
Weight: 61kg
CMV count: 64,000 (test taken Tuesday 18/03/2014
Gritty eyed and wide awake on a Monday morning at 0350am waiting for daylight to start behind the blind. Hoping today to hear that my CMV levels are down to a manageable level and that my chances of getting out this week are enhanced. Speaking with a registrar just before he went off shift last night, he said it was not unlikely that I may be released to continue valganciclovir therapy via pills even if the CMV levels were not back to zero, nodded off there - 0430am coffee soon. Once it's daylight and I can start making preparations for the day things always start to pick up.
Some news from Russell Cook - he ran the Rome marathon yesterday in aid of AA and MDS/UK in 5ish hours so congratulations on a great achievement. I have also spent sometime catching up with a couple of people I was chatting to this time last year and who were interested in the blog as they were both approaching due time for BMT. One of who's (TB) has now taken place and the woman in question is going over a few bumps on the road just now (ain't we all) so this is my chance to pass on my best wishes and to say not to get downhearted - you need blinker vision for this kind of thing and then just the occasional look around to let you know what you're doing it for. I think I should have taken a few more looks around during the past year - I got a bit too dogged and blinkered.
Another was getting ready for BMT day this time last year and through reasons out of her control has had to delay things even further but is due possibly over the next couple of months.To this woman (SF) I say I hope the info on wards and personnel I gave proved helpful and that you get the support structure sorted such that you are able to take up the offer of the BMT soonest - because once quality of life starts to degrade it is most definitely time to jump ship and go for the new stuff.
My wife called me yesterday with the news that "we may be getting a horse!" A friend of a friend is off to Dubai and has dragged this poor bloody animal halfway across the world on her travels but is unable to take it to Dubai so is looking for a good home for him - for free! Jeannette was a very keen rider from a kid right up until her mid thirties and I know she misses it so watch this space. Milo loves horses and even I'm prepared to give it go once my arse grows back.
Must've dozed after this... time now 0555 hrs mouth quite painful first thing so time for Difflam mouthwash then we all know where I'm headed now! The shower - er- I mean coffee!
Later...
Ordered a new mobile phone yesterday as in my own unique style I managed to lock myself out of my crappy Blackberry PAYG account with EE, so I could receive calls and send txts but not dial out. Then I used up all the txts (teckstees as they say on Jeremy Kyle) - as in " 'er done sent 'im dirty teckstees oi seen 'em" and the whole thing seemed a bit stupid as I was paying at least a tenner a month on PAYG top up and was now locked out of the account so couldn't even do that. So found a basic entry level nokia smartphone for £11 a month with the Carphone Warehouse - I'm not being sponsored or anything. What a service those guys do - really strapped down tight, ordered it about 8pm last night and been getting emails tracking it from Birmingham to here during the course of the morning it's now at Southwark depot and it's due to be delivered later today. This being South London I reckon the last 300 metres of the journey will prove to the riskiest. Phone arrived at 1400 hrs - impressed.
Showered and slept feeling a bit more human now. Victoria Potter due on rounds this afternoon so hoping for news on CMV levels. Quiet week otherwise. Hello - spoke too soon, have to go down to haemotology outpatients at 1300hrs tomorrow for the dreaded Pentamidine inhaler. I thought I was finished with this stuff when I was put on Septrin tablets, turns out that they are basically the same drug in different formats but that the dosage of pentamidine is less toxic to bone marrow than Septrin. So for the best chance of recovery I have to go back to the old once a month inhaler.
Saw Victoria Potter today - unfortunately no CMV results today- due in tmw so I'll be here until at least Weds maybe out Thursday after photo-pheresis at Guys. Fingers crossed.
Had a little bit of a revelation earlier today, reading another blog site from a young guy called Josh who is currently undergoing chemo for Hodgkinson's Lymphoma. He was discussing his treatment and drugs regime and is being given prednisolone 75mg as a precursor to chemo and also as part of the ongoing process. He mentions the usual 'moonface' common to people taking steroids and then goes on talk about sudden inexplicable crying and emotional jags. Now this was all news to me, as I've been getting exactly the same thing which had made me think that I was starting to crack a bit. I'm usually pretty stoic and in control and it felt very strange to be welling up over the slightest thing, especially when skyping with my wife. So I couldn't wait to let her know that I hadn't suddenly become a big girlie and that I'm not falling off the end of anything.
Mind you at home we would often both end up a bit tear streaked at the end of watching movies together but I think that's allowed. Right that'll do for now - just been hooked up to another lovely bag of ganciclovir for an hour so goodnight.
Haemoglobin: TBA (range 120-150)
WBC: TBA (range 3.5 - 9.0)
Platelets: TBA (range 150 - 400)
Neutrophils: TBA (range 2 - 7.5)
Weight: 61kg
CMV count: 64,000 (test taken Tuesday 18/03/2014
Gritty eyed and wide awake on a Monday morning at 0350am waiting for daylight to start behind the blind. Hoping today to hear that my CMV levels are down to a manageable level and that my chances of getting out this week are enhanced. Speaking with a registrar just before he went off shift last night, he said it was not unlikely that I may be released to continue valganciclovir therapy via pills even if the CMV levels were not back to zero, nodded off there - 0430am coffee soon. Once it's daylight and I can start making preparations for the day things always start to pick up.
Some news from Russell Cook - he ran the Rome marathon yesterday in aid of AA and MDS/UK in 5ish hours so congratulations on a great achievement. I have also spent sometime catching up with a couple of people I was chatting to this time last year and who were interested in the blog as they were both approaching due time for BMT. One of who's (TB) has now taken place and the woman in question is going over a few bumps on the road just now (ain't we all) so this is my chance to pass on my best wishes and to say not to get downhearted - you need blinker vision for this kind of thing and then just the occasional look around to let you know what you're doing it for. I think I should have taken a few more looks around during the past year - I got a bit too dogged and blinkered.
Another was getting ready for BMT day this time last year and through reasons out of her control has had to delay things even further but is due possibly over the next couple of months.To this woman (SF) I say I hope the info on wards and personnel I gave proved helpful and that you get the support structure sorted such that you are able to take up the offer of the BMT soonest - because once quality of life starts to degrade it is most definitely time to jump ship and go for the new stuff.
My wife called me yesterday with the news that "we may be getting a horse!" A friend of a friend is off to Dubai and has dragged this poor bloody animal halfway across the world on her travels but is unable to take it to Dubai so is looking for a good home for him - for free! Jeannette was a very keen rider from a kid right up until her mid thirties and I know she misses it so watch this space. Milo loves horses and even I'm prepared to give it go once my arse grows back.
Must've dozed after this... time now 0555 hrs mouth quite painful first thing so time for Difflam mouthwash then we all know where I'm headed now! The shower - er- I mean coffee!
Later...
Ordered a new mobile phone yesterday as in my own unique style I managed to lock myself out of my crappy Blackberry PAYG account with EE, so I could receive calls and send txts but not dial out. Then I used up all the txts (teckstees as they say on Jeremy Kyle) - as in " 'er done sent 'im dirty teckstees oi seen 'em" and the whole thing seemed a bit stupid as I was paying at least a tenner a month on PAYG top up and was now locked out of the account so couldn't even do that. So found a basic entry level nokia smartphone for £11 a month with the Carphone Warehouse - I'm not being sponsored or anything. What a service those guys do - really strapped down tight, ordered it about 8pm last night and been getting emails tracking it from Birmingham to here during the course of the morning it's now at Southwark depot and it's due to be delivered later today. This being South London I reckon the last 300 metres of the journey will prove to the riskiest. Phone arrived at 1400 hrs - impressed.
Showered and slept feeling a bit more human now. Victoria Potter due on rounds this afternoon so hoping for news on CMV levels. Quiet week otherwise. Hello - spoke too soon, have to go down to haemotology outpatients at 1300hrs tomorrow for the dreaded Pentamidine inhaler. I thought I was finished with this stuff when I was put on Septrin tablets, turns out that they are basically the same drug in different formats but that the dosage of pentamidine is less toxic to bone marrow than Septrin. So for the best chance of recovery I have to go back to the old once a month inhaler.
Saw Victoria Potter today - unfortunately no CMV results today- due in tmw so I'll be here until at least Weds maybe out Thursday after photo-pheresis at Guys. Fingers crossed.
Had a little bit of a revelation earlier today, reading another blog site from a young guy called Josh who is currently undergoing chemo for Hodgkinson's Lymphoma. He was discussing his treatment and drugs regime and is being given prednisolone 75mg as a precursor to chemo and also as part of the ongoing process. He mentions the usual 'moonface' common to people taking steroids and then goes on talk about sudden inexplicable crying and emotional jags. Now this was all news to me, as I've been getting exactly the same thing which had made me think that I was starting to crack a bit. I'm usually pretty stoic and in control and it felt very strange to be welling up over the slightest thing, especially when skyping with my wife. So I couldn't wait to let her know that I hadn't suddenly become a big girlie and that I'm not falling off the end of anything.
Mind you at home we would often both end up a bit tear streaked at the end of watching movies together but I think that's allowed. Right that'll do for now - just been hooked up to another lovely bag of ganciclovir for an hour so goodnight.
Sunday 23 March 2014
T + 397. Help me stop doing this crap or at least help me get paid for it! (Part 2)
23/03/2014
Haemoglobin: 109 (range 120-150)
WBC: 3.7 (range 3.5 - 9.0)
Platelets: 53 (range 150 - 400)
Neutrophils: 2.72 (range 2 - 7.5)
Weight: 60.8kg
CMV count: 64,000 (test taken Tuesday 18/03/2014
Bloods slightly up good news. Still awaiting CMV update Mon/Tues.
It dawned on me that my high caffeine intake might not be helping my sleeping pattern and blood pressure (which is up - probably mostly due to meds) so I've cut out all the sweet black coffees that the trolley lady has been feeding me all day in favour of water or the odd hot chocolate. But I am still allowing myself one coffee first thing from the hospital shop downstairs. So - awake from about 5am waiting until 6 so I could buzz down and grab a cappuccino from the machine in the shop...and bollocks it's Sunday not open until 7am. As a recovering alcoholic of ten years and an ex-smoker of 9 years I have strategies to handle setbacks like this! I walked round the hospital checking every other frigging cafe just in case they might be open earlier. Nope. Gagging for caffeine by now walked verrry slowly back to the ward just in time to wash and get back down the shop for 7am sharp and coffee.
Bloody hell a cup never tasted better.
I have to allow myself a quick grin whenever I hear someone use that old throwaway line:-
" I could never (smoke cigarettes, do line dancing, sky diving, play chess) because I've got such an addictive personaliteeee" Yeah - fuck if you only knew.
Quiet day slid down for a quick Xray about 1300hrs - booked by the registrars when I coughed for them the other day all OK and clear. Sounds like I'm bitching but really am very grateful and impressed with the level of care I'm getting.
I've been telling everyone who'll listen about how calming I find the effects of my morning shower and that it lowers my BP afterwards. The one hassle I've been having is what with a cannula fitted I have had to sit there with whichever arm has the cannula sticking out of the shower to keep to keep it dry. Then I had a new one fitted quite far down on the back of my left hand and 'hey presto!' a solution presented itself. In case you don't know what a cannula is, it's a needle left threaded into a vein to enable meds to be administered by drip feed.
With a bit of inventive use of bandage tape and a surgical glove I was able to seal the cannula inside the glove to make the thing pretty waterproof - proper McGuiver job. Anyway this all worked really well - I've got the fold out seat installed in there and after my morning session on the intravenous line I usually get breakfast and then duck off for a shower.
Fast forward a couple of days and I've finished showering, coming out of the bathroom in dressing gown to get pyjama trousers and vest on and a nurse knocked on the door - not really thinking I said come in - she did.
The first clue was her eyes went straight to my left hand which was still 'gloved up'.
Quick thinking needed here, not what I did. I flourished the gloved hand and said;
" This - it's just an old prison trick ! " (you know what I mean)
Realising immediately as I said it that a) she was probably a bit young to get that kind of joke and b) that it looked pretty self-evident what was making my 'showers' so relaxing.
Cue another uncomfortable silence as I sat on the bed to have my observations taken, - temperature, saturation and blood pressure. Which wasn't down this time!
Haemoglobin: 109 (range 120-150)
WBC: 3.7 (range 3.5 - 9.0)
Platelets: 53 (range 150 - 400)
Neutrophils: 2.72 (range 2 - 7.5)
Weight: 60.8kg
CMV count: 64,000 (test taken Tuesday 18/03/2014
Bloods slightly up good news. Still awaiting CMV update Mon/Tues.
It dawned on me that my high caffeine intake might not be helping my sleeping pattern and blood pressure (which is up - probably mostly due to meds) so I've cut out all the sweet black coffees that the trolley lady has been feeding me all day in favour of water or the odd hot chocolate. But I am still allowing myself one coffee first thing from the hospital shop downstairs. So - awake from about 5am waiting until 6 so I could buzz down and grab a cappuccino from the machine in the shop...and bollocks it's Sunday not open until 7am. As a recovering alcoholic of ten years and an ex-smoker of 9 years I have strategies to handle setbacks like this! I walked round the hospital checking every other frigging cafe just in case they might be open earlier. Nope. Gagging for caffeine by now walked verrry slowly back to the ward just in time to wash and get back down the shop for 7am sharp and coffee.
Bloody hell a cup never tasted better.
I have to allow myself a quick grin whenever I hear someone use that old throwaway line:-
" I could never (smoke cigarettes, do line dancing, sky diving, play chess) because I've got such an addictive personaliteeee" Yeah - fuck if you only knew.
Quiet day slid down for a quick Xray about 1300hrs - booked by the registrars when I coughed for them the other day all OK and clear. Sounds like I'm bitching but really am very grateful and impressed with the level of care I'm getting.
I've been telling everyone who'll listen about how calming I find the effects of my morning shower and that it lowers my BP afterwards. The one hassle I've been having is what with a cannula fitted I have had to sit there with whichever arm has the cannula sticking out of the shower to keep to keep it dry. Then I had a new one fitted quite far down on the back of my left hand and 'hey presto!' a solution presented itself. In case you don't know what a cannula is, it's a needle left threaded into a vein to enable meds to be administered by drip feed.
With a bit of inventive use of bandage tape and a surgical glove I was able to seal the cannula inside the glove to make the thing pretty waterproof - proper McGuiver job. Anyway this all worked really well - I've got the fold out seat installed in there and after my morning session on the intravenous line I usually get breakfast and then duck off for a shower.
Fast forward a couple of days and I've finished showering, coming out of the bathroom in dressing gown to get pyjama trousers and vest on and a nurse knocked on the door - not really thinking I said come in - she did.
The first clue was her eyes went straight to my left hand which was still 'gloved up'.
Quick thinking needed here, not what I did. I flourished the gloved hand and said;
" This - it's just an old prison trick ! " (you know what I mean)
Realising immediately as I said it that a) she was probably a bit young to get that kind of joke and b) that it looked pretty self-evident what was making my 'showers' so relaxing.
Cue another uncomfortable silence as I sat on the bed to have my observations taken, - temperature, saturation and blood pressure. Which wasn't down this time!
Saturday 22 March 2014
T + 396. Help me stop doing this crap or at least help me get paid for it!
22/03/2014
Haemoglobin: 104 (range 120-150)
WBC: 4.02 (range 3.5 - 9.0)
Platelets: 46 (range 150 - 400)
Neutrophils: 2.26 (range 2 - 7.5)
Weight: 60.6kg
CMV count: 64,000 (test taken Tuesday 18/03/2014)
These blood counts are generally good. Platelets could do with being higher, but you can run a human body pretty well at these levels. If I decided to juggle chainsaws or dine on ground glass today, then the platelets might become an issue, so I've changed plans.
Now please bear with on this.
For those of you who may find some of the stuff I relate in this blog a little unlikely and slapstick I'd just like to reassure you that although I may take a little artistic license in the description of some situations, the underlying humiliation and impact of the stupid fucking things I do and the spin outs that result from said actions are completely true. Believe me someone either needs to show me how to stop doing it or at least just send it to the BBC as a pilot so I can generate a bit of cash from it.
I will start by relating the first of two examples of how this stuff just transpires - it may be flowery in the telling but every word, blush, (still blush at nearly 52) cringe and face palm is real I promise, it will probably need two blog entries.
In my 20's I used to be an avid reader of Tom Sharpe, a British writer of farcical comedy novels whose books were long on exposition and carefully written to shield the reader from any idea as to how the plot construction would explode in a series of carefully planned, fucking hysterical, comedy scenes. This was howl out loud on the bus stuff - back in the days when people still noticed nutters on the bus. So in order not to lift the rabbit out of the hat too soon I'm going to have to pull a bit of a Sharpe and take the scenic route on this to fill in some background stuff before I get to the face palming.
After blogging "tights gate" T +395 I did that wry shake of the head chuckle and carried on as per usual - the funny old things that happen eh? I tend to listen to BBC radio 4 or i-tunes most days, I just run them straight out of the speakers of my laptop whilst dicking around with Fbook, sudoku, words with friends etc. Musically my tastes are all over the place from 60s onwards - not so much current shite but pretty much any genre from 60s to mid 90s then more selective after that. No dance no house no trance no dubstep no bloody boybands - and still faintly embarrassed about some metal choices from the 80s.
I tend to binge on an artist for a bit and then lose interest after a couple of months so past faves have been Super Furry Animals, Ben Folds with the Five and him solo, Bowie, Americana all sorts of stuff that I'll hanker after and then forget left in a playlist. I most often go for top rated songs to start with then if I like what I hear I go back and pick up the rest of the album. This leads to a few stubs and uncompleted albums and some weird eps and one offs. When I am not in here chunks of it are dumped out to a 16 gig i-pod which I use when commuting, dog walking or jacked into the car via one of those sony cassette adaptors.
It's not unusual for me to leave one of these playlists running in the background whilst I'm browsing and not really pay that much attention to what is going on - lots of times it's just soothing.
So one of my merged playlists was running today as I was playing Words with friends - a nurse entered my isolation room with a couple of cups full of meds and a bag of ganciclovir to crunch the CMV. I was letting her get on with the flushes and injecting cold saline up through the cannula to make sure it was clear to accept the infusion. it began to dawn on me that a very familar melodic sound was wafting from the laptop and I began to feel the first pangs of my head heating up.
Back in 2005 or 2006 Ben Folds did an album of covers and remakes post Ben Folds Five career - "a post modern take on rehabilitating street and ghetto .music" is what I would call it now in management bullshit and basically reselling it to a white audience. I had heard this particular track a couple of times and thought it quite a clever way to diffuse some of the bile of the original but also considered that it was probably something he rolled out at gigs as a gimmick.
Now for the fun bit. The song is called 'Bitches ain't Shit' by Snoop Dogg and Dr Dre originally a nursery rhyme type rap harsh and unmelodic but given the college piano, bass and drums treatment by Ben Folds. If you know the song you will know my predicament if not and you are of a demeanour that is either strong enough to tolerate lots of anglo saxon go ahead and listen or you may just be plain evil and want to taste my pain.
It's here http://www.youtube.com/watch?v=dSJxvi767kQ
Highlight it left to right, right click and select, Go to http://etc towards the bottom of the drop down menu and it should take you there. If it doesn't work drop it and paste it to your browser
About now the lyrics are at "It's my little Cousin daz and he's fucking my hoe" time to sort this.
By this time she has my left hand where she is inserting the giving kit for the ganciclovir I have a real red blushing beamer going on and a free right hand so I cleverly shift it across to the mouse on the laptop and push on to any other song to be safe - but it wasn't - safe I mean. Ever heard of The Super Furry Animals and their work with Goldie Looking Chain? I have an MP3 copy CD EP a few years back with a song on it about Alien Abduction called.....MOTHERFUCKER. It was at about this point I pulled the power lead from the side of the pc and things drew to a merciful pause apart from the gentle bloop bloop of my blushing pink head and the runnels of sweat down the side of my face.
Edit for some reason I can't find SFA/GLC on you tube, but if people are desperate to hear it I may be able to load it from my collection temporarily unless anyone else has any bright ideas.
It's things like this that get you in the nonce pages of the Daily Mail.... it gets worse in next blog.
Haemoglobin: 104 (range 120-150)
WBC: 4.02 (range 3.5 - 9.0)
Platelets: 46 (range 150 - 400)
Neutrophils: 2.26 (range 2 - 7.5)
Weight: 60.6kg
CMV count: 64,000 (test taken Tuesday 18/03/2014)
These blood counts are generally good. Platelets could do with being higher, but you can run a human body pretty well at these levels. If I decided to juggle chainsaws or dine on ground glass today, then the platelets might become an issue, so I've changed plans.
Now please bear with on this.
For those of you who may find some of the stuff I relate in this blog a little unlikely and slapstick I'd just like to reassure you that although I may take a little artistic license in the description of some situations, the underlying humiliation and impact of the stupid fucking things I do and the spin outs that result from said actions are completely true. Believe me someone either needs to show me how to stop doing it or at least just send it to the BBC as a pilot so I can generate a bit of cash from it.
I will start by relating the first of two examples of how this stuff just transpires - it may be flowery in the telling but every word, blush, (still blush at nearly 52) cringe and face palm is real I promise, it will probably need two blog entries.
In my 20's I used to be an avid reader of Tom Sharpe, a British writer of farcical comedy novels whose books were long on exposition and carefully written to shield the reader from any idea as to how the plot construction would explode in a series of carefully planned, fucking hysterical, comedy scenes. This was howl out loud on the bus stuff - back in the days when people still noticed nutters on the bus. So in order not to lift the rabbit out of the hat too soon I'm going to have to pull a bit of a Sharpe and take the scenic route on this to fill in some background stuff before I get to the face palming.
After blogging "tights gate" T +395 I did that wry shake of the head chuckle and carried on as per usual - the funny old things that happen eh? I tend to listen to BBC radio 4 or i-tunes most days, I just run them straight out of the speakers of my laptop whilst dicking around with Fbook, sudoku, words with friends etc. Musically my tastes are all over the place from 60s onwards - not so much current shite but pretty much any genre from 60s to mid 90s then more selective after that. No dance no house no trance no dubstep no bloody boybands - and still faintly embarrassed about some metal choices from the 80s.
I tend to binge on an artist for a bit and then lose interest after a couple of months so past faves have been Super Furry Animals, Ben Folds with the Five and him solo, Bowie, Americana all sorts of stuff that I'll hanker after and then forget left in a playlist. I most often go for top rated songs to start with then if I like what I hear I go back and pick up the rest of the album. This leads to a few stubs and uncompleted albums and some weird eps and one offs. When I am not in here chunks of it are dumped out to a 16 gig i-pod which I use when commuting, dog walking or jacked into the car via one of those sony cassette adaptors.
It's not unusual for me to leave one of these playlists running in the background whilst I'm browsing and not really pay that much attention to what is going on - lots of times it's just soothing.
So one of my merged playlists was running today as I was playing Words with friends - a nurse entered my isolation room with a couple of cups full of meds and a bag of ganciclovir to crunch the CMV. I was letting her get on with the flushes and injecting cold saline up through the cannula to make sure it was clear to accept the infusion. it began to dawn on me that a very familar melodic sound was wafting from the laptop and I began to feel the first pangs of my head heating up.
Back in 2005 or 2006 Ben Folds did an album of covers and remakes post Ben Folds Five career - "a post modern take on rehabilitating street and ghetto .music" is what I would call it now in management bullshit and basically reselling it to a white audience. I had heard this particular track a couple of times and thought it quite a clever way to diffuse some of the bile of the original but also considered that it was probably something he rolled out at gigs as a gimmick.
Now for the fun bit. The song is called 'Bitches ain't Shit' by Snoop Dogg and Dr Dre originally a nursery rhyme type rap harsh and unmelodic but given the college piano, bass and drums treatment by Ben Folds. If you know the song you will know my predicament if not and you are of a demeanour that is either strong enough to tolerate lots of anglo saxon go ahead and listen or you may just be plain evil and want to taste my pain.
It's here http://www.youtube.com/watch?v=dSJxvi767kQ
Highlight it left to right, right click and select, Go to http://etc towards the bottom of the drop down menu and it should take you there. If it doesn't work drop it and paste it to your browser
 |
| That's right - this prick |
About now the lyrics are at "It's my little Cousin daz and he's fucking my hoe" time to sort this.
By this time she has my left hand where she is inserting the giving kit for the ganciclovir I have a real red blushing beamer going on and a free right hand so I cleverly shift it across to the mouse on the laptop and push on to any other song to be safe - but it wasn't - safe I mean. Ever heard of The Super Furry Animals and their work with Goldie Looking Chain? I have an MP3 copy CD EP a few years back with a song on it about Alien Abduction called.....MOTHERFUCKER. It was at about this point I pulled the power lead from the side of the pc and things drew to a merciful pause apart from the gentle bloop bloop of my blushing pink head and the runnels of sweat down the side of my face.
Edit for some reason I can't find SFA/GLC on you tube, but if people are desperate to hear it I may be able to load it from my collection temporarily unless anyone else has any bright ideas.
It's things like this that get you in the nonce pages of the Daily Mail.... it gets worse in next blog.
Friday 21 March 2014
T + 395.UPDATED Is that the bloke out of The Matrix and LOTR on the right?
21/03/2014
Haemoglobin: 10.9
WBC: 4.61
Platelets: 51
Neutrphylls: 3.59
Weight: 61.9kg
This is all good news. I haven't had any top ups for more than a week and am no longer neutropeanic. So don't need to wear a mask when I leave the ward.
Something happened - doesn't it always?
Had a shower this morning and spent a good 30 odd minutes with a chair in the cubicle just letting it wash over me. Really relaxing. Shave, spray all that business clean pyjamas then sat on the bed to put my DVT stockings back on, they are white and made of nylon. Now before you start everybody in here has to wear them in order to prevent deep vein thrombosis as we spend a fair amount of time in isolation rooms sitting on a bed doing nowt and the stockings compress your legs to keep the blood flow vigorous.
I now know- as certainly any women reading this will know, there is a right way to wear stockings and tights there is a foot bit just like in socks so you have to roll them up to get them on right. So I was in the middle of doing this laying on my back on the bed tongue sticking out - which it does when I concentrate, leg raised at 45 degrees up in the air to roll the stocking down my leg when I looked up through the glass pane of my door window and made brief but horrifying eye contact with a gent standing outside my door - guy about my age making his way down the ward to visit a family member I guess, I think he thought I was Priscilla Queen of the Desert because his eyes were bugging out of his head then the head went down and he scuttled off double quick. Mind you better that than sliding over to the door and coming in I s'pose. Hopefully his spouse/other half will explain.
Just had a lovely visit with Jeannette, who also arrived with 3 bags of stuff to keep me stocked up until next week. Great to be together in the same room rather than on Skype or on the end of a mobile. Two hours to get here, an hour's visit and two and a half hours back to get Milo from school. Nice day off! Then a visit from a couple of Victoria's registrars who gave me a general checking over and who have promised to get back to me with a revised CMV level later today or Monday. I'm told they are currently doing the tests twice a week so unless they accelerate the treatment or increase the number of tests I could be here 'til late next week, for a 7-10 day stay this has overrun a bit - no point going out until I'm fixed. I made the mistake of clearing my throat and having a quick cough whilst they were here and inadvertently booked myself a chest X-Ray....
Edit woke at 0100hrs feeling a little refreshed but still dozy from the zopzop and keen to write even if it is just more giblets. I had a long chat with J after she got home last night and we're both still going to stick firm with this place and keep the faith that Victoria P knows what is best for me in terms of quashing the CNV and oral GVHD. This stay is now approaching the halfway mark of last year which included the full 9 day lazarus experience. They both want me home now and I wanna be home now - but another week should pay long term dividends. May amble off to get a cocoa. It got a tad cold in here earlier so I pulled my jumper on - it has zip neck and leather collar sitting here looking at it on web cam - I have more than a passing resemblance to Uncle Fester from the Adams Family Movie. Pic to follow.
To finish - some stats; the top 10 totals 7691 views. Please note Ukraine is kicking Russia's arse in this respect. The total number of page view for all countries is an amazing 8485 with 85 separate viewings yesterday alone. A welcome to Poland, Denmark, Belgium and especially to our Nigerian reader. Please feel free to leave comments or feedback on the blogspot page - the entries with comments get more readers. I sometimes feel like I'm pissing down a well here. That might not make the edit....
No sleep for you! 0525am and back at it. I sometimes look at the US news section of the Daily Mail paper online - life there is certainly more intense and bigger than here = more people = more accidents and drama. However there is something that I've noticed in the comments section of the letters, which is that USA citizens get very defensive if a person from outside the US (normally the UK as it's the daily mail) comments on a US story in even a slightly negative way. Hang on I'll see if I can find an example; bugger no specific examples just now, but I'll keep looking on this and post back - or else edit this out!
Haemoglobin: 10.9
WBC: 4.61
Platelets: 51
Neutrphylls: 3.59
Weight: 61.9kg
This is all good news. I haven't had any top ups for more than a week and am no longer neutropeanic. So don't need to wear a mask when I leave the ward.
Something happened - doesn't it always?
Had a shower this morning and spent a good 30 odd minutes with a chair in the cubicle just letting it wash over me. Really relaxing. Shave, spray all that business clean pyjamas then sat on the bed to put my DVT stockings back on, they are white and made of nylon. Now before you start everybody in here has to wear them in order to prevent deep vein thrombosis as we spend a fair amount of time in isolation rooms sitting on a bed doing nowt and the stockings compress your legs to keep the blood flow vigorous.
I now know- as certainly any women reading this will know, there is a right way to wear stockings and tights there is a foot bit just like in socks so you have to roll them up to get them on right. So I was in the middle of doing this laying on my back on the bed tongue sticking out - which it does when I concentrate, leg raised at 45 degrees up in the air to roll the stocking down my leg when I looked up through the glass pane of my door window and made brief but horrifying eye contact with a gent standing outside my door - guy about my age making his way down the ward to visit a family member I guess, I think he thought I was Priscilla Queen of the Desert because his eyes were bugging out of his head then the head went down and he scuttled off double quick. Mind you better that than sliding over to the door and coming in I s'pose. Hopefully his spouse/other half will explain.
 |
| I'm in the middle |
Edit woke at 0100hrs feeling a little refreshed but still dozy from the zopzop and keen to write even if it is just more giblets. I had a long chat with J after she got home last night and we're both still going to stick firm with this place and keep the faith that Victoria P knows what is best for me in terms of quashing the CNV and oral GVHD. This stay is now approaching the halfway mark of last year which included the full 9 day lazarus experience. They both want me home now and I wanna be home now - but another week should pay long term dividends. May amble off to get a cocoa. It got a tad cold in here earlier so I pulled my jumper on - it has zip neck and leather collar sitting here looking at it on web cam - I have more than a passing resemblance to Uncle Fester from the Adams Family Movie. Pic to follow.
| graphic denotes location of top 10 readers |
To finish - some stats; the top 10 totals 7691 views. Please note Ukraine is kicking Russia's arse in this respect. The total number of page view for all countries is an amazing 8485 with 85 separate viewings yesterday alone. A welcome to Poland, Denmark, Belgium and especially to our Nigerian reader. Please feel free to leave comments or feedback on the blogspot page - the entries with comments get more readers. I sometimes feel like I'm pissing down a well here. That might not make the edit....
Entry
| Pageviews | |||
United Kingdom
|
5810
| |||
United States
|
765
| |||
Canada
|
242
| |||
Latvia
|
219
| |||
Germany
|
209
| |||
Ireland
|
117
| |||
Ukraine
|
117
| |||
Russia
|
86
| |||
Poland
|
65
| |||
Australia
|
61
| |||
No sleep for you! 0525am and back at it. I sometimes look at the US news section of the Daily Mail paper online - life there is certainly more intense and bigger than here = more people = more accidents and drama. However there is something that I've noticed in the comments section of the letters, which is that USA citizens get very defensive if a person from outside the US (normally the UK as it's the daily mail) comments on a US story in even a slightly negative way. Hang on I'll see if I can find an example; bugger no specific examples just now, but I'll keep looking on this and post back - or else edit this out!
Thursday 20 March 2014
T + 394. More Insomniac Brain farts...
Hgb
WBC
PLTS
NTS
Weight: 61.8 kg
Hey presto snapped awake at 01.30 am this morning so you get the benefit of extra added extra this day.
Well why I should have thought having a curry last night was a good idea is beyond me. I thought korma was supposed to be light weight - sat here for 30 minutes getting it down like eating glowing charcoal briquettes and gulping down mouthfuls of water to sooth my poor mouth. Ulcers deffo resurgent so tacrolimus and prednisolone mouthwashes have been upped to 3x per day each alternately to try and send them on their merry way.This does not bode well for the current pain management measures - they need to hit me up with something from next cabinet!
Got to see Victoria Potter (Consultant) yesterday and the news is pretty much the same, going to be here over the weekend and into the beginning of next week so the levels of CMV can be further reduced by IV ganciclovir before I get released back into the wild. One change is that I'm not having so many salts or bags of NAC infused so I definitely feel less bloated it was getting to the point where I could feel saline bubbling up in the back of my throat or running out of my nose if I leaned forward. I'm sure the nurses and docs don't believe that it happens but you get 2 - 3 litres of this stuff in you and it goes in faster than you can process it, so you get water retention. Feel very safe under Dr Potters care as she has stuck with my case consistently since I hit problems, whereas last year all the consultants kept chopping and changing. and I found that I was starting from the ground up each time.
Jeannette is making the trek up from East Sussex to see me tomorrow which I am looking forward to - looking after Milo has meant she's been pinned down since I was admitted and we've been relying on email and Skype. It also means I get some clean schmutter and a stock of goodies from 'outside' where people be - really looking forward to seeing her. Had a listen to our song and a bit of a <snif> just now.
Got an email from my eldest son earlier this evening - he's preparing for his degree finals in Law at Nottingham and asked me to give his paper the once over because he thought his grammar might be a bit strangled and as anyone who has been following this blog will know I speak English right fucking good.
So erm well what can I say? I read the statement at the top of the doc which was to form the basis of the relative points to be discussed in the 6k word paper and it might have been have been ants walking up and down the page for all I understood. Not because it was in any way poorly written - more that he is now fluent in a language of legalese in which I am palpably not and I was pretty much scoobied reading it. I was thinking so is that bit actually the question or not and OK OK any spelling mistakes I can correct or commas I can delete on track changes to prove I've looked at it. I really was as much use as a chocolate teapot and realised probably for the first time that contrary to what his FB page might indicate, his time there hasn't just involved arseing it up in the student union and clubbing but actual proper learning. I did however put some nice word art teddy bears in the corners of the pages for him. They'll love that when marking his paper.
I will be very proud when he achieves his degree later this year and probably wet eyed at the presentation. My younger sister is the only other person in our family to have proceeded this far and it makes me happy to know that although the world is now such a more cut-throat place with zero hours contracts and unpaid work experience, at least with a degree qualification and youth he can piss off to wherever he wants for a year, the States or Australia to hunt down opportunity. Something I came to regret not doing when I had the chance - a degree now is minimum entry level for most jobs whereas I skated by with 5 crappy 0 levels back in the 70s and 80s, but surprisingly still found work very easily - I doubt the current generation will have such an easy ride. Did manage to do a lot of travelling though - it was just starting to get cool in the 70s/80s.
I think the bunch of poor sods who got their mickey mouse degrees under the last labour government are now finally managing their expectations re where their media studies or social studies degree actually gets them and are getting a job - any job. I worry that I have oversold to Callum - but see that he has formed a broad social circle is popular and intelligent and think thus that Uni has been worth it and with a decent work ethic he should be ok. The management bullshit may run deep in this one.
Just went down to the nurses station to get a cup of chocolate - and walking back was looking through some of the other patients windows. Everybody looks completely shattered just laying back prone and sleeping. Wish I could get some of that. I'm downloading Abbey Road fancy a bit of that, must remember to back all this up.
Wow - 8402 page views at close of business today! Welcome to my two new readers from Nigeria and Kazhakstan! I am flummoxed that this tosh gets looked at so much. Still think I should have done something with Jezza Bingo from last year though....
So got more hot chocolate eating a bag of nuts and raisin trail mix and waiting for tiredness.
laters sleepyheads.
4am wake up! Must sleep during the course of today it's truly bizarre I've got into this pattern of 90 minutes on 90 minutes off. So now listening to some Mike Oldfield in the hope it'll lull me off. When I wake now I'm immediately aware that my cheek is throbbing from where my teeth have pushed into the cheek ulcers whilst I am asleep - its very disappointing to be getting these little bastards back but if I had the choice between this and the colitis and trots I know which I'd be choosing! when I was here last year the ward was chocker this year it appears about 25% empty and the punters are a lot older - theres only one other below 60 I'd hazard which is great if thety're all here for BMT as it shows a distinct change of tack. Mind you wonder how I'd cope if I were ten years older ....
WBC
PLTS
NTS
Weight: 61.8 kg
 |
| sheeeeeeeyyit |
Hey presto snapped awake at 01.30 am this morning so you get the benefit of extra added extra this day.
Well why I should have thought having a curry last night was a good idea is beyond me. I thought korma was supposed to be light weight - sat here for 30 minutes getting it down like eating glowing charcoal briquettes and gulping down mouthfuls of water to sooth my poor mouth. Ulcers deffo resurgent so tacrolimus and prednisolone mouthwashes have been upped to 3x per day each alternately to try and send them on their merry way.This does not bode well for the current pain management measures - they need to hit me up with something from next cabinet!
Got to see Victoria Potter (Consultant) yesterday and the news is pretty much the same, going to be here over the weekend and into the beginning of next week so the levels of CMV can be further reduced by IV ganciclovir before I get released back into the wild. One change is that I'm not having so many salts or bags of NAC infused so I definitely feel less bloated it was getting to the point where I could feel saline bubbling up in the back of my throat or running out of my nose if I leaned forward. I'm sure the nurses and docs don't believe that it happens but you get 2 - 3 litres of this stuff in you and it goes in faster than you can process it, so you get water retention. Feel very safe under Dr Potters care as she has stuck with my case consistently since I hit problems, whereas last year all the consultants kept chopping and changing. and I found that I was starting from the ground up each time.
Jeannette is making the trek up from East Sussex to see me tomorrow which I am looking forward to - looking after Milo has meant she's been pinned down since I was admitted and we've been relying on email and Skype. It also means I get some clean schmutter and a stock of goodies from 'outside' where people be - really looking forward to seeing her. Had a listen to our song and a bit of a <snif> just now.
Got an email from my eldest son earlier this evening - he's preparing for his degree finals in Law at Nottingham and asked me to give his paper the once over because he thought his grammar might be a bit strangled and as anyone who has been following this blog will know I speak English right fucking good.
So erm well what can I say? I read the statement at the top of the doc which was to form the basis of the relative points to be discussed in the 6k word paper and it might have been have been ants walking up and down the page for all I understood. Not because it was in any way poorly written - more that he is now fluent in a language of legalese in which I am palpably not and I was pretty much scoobied reading it. I was thinking so is that bit actually the question or not and OK OK any spelling mistakes I can correct or commas I can delete on track changes to prove I've looked at it. I really was as much use as a chocolate teapot and realised probably for the first time that contrary to what his FB page might indicate, his time there hasn't just involved arseing it up in the student union and clubbing but actual proper learning. I did however put some nice word art teddy bears in the corners of the pages for him. They'll love that when marking his paper.
I will be very proud when he achieves his degree later this year and probably wet eyed at the presentation. My younger sister is the only other person in our family to have proceeded this far and it makes me happy to know that although the world is now such a more cut-throat place with zero hours contracts and unpaid work experience, at least with a degree qualification and youth he can piss off to wherever he wants for a year, the States or Australia to hunt down opportunity. Something I came to regret not doing when I had the chance - a degree now is minimum entry level for most jobs whereas I skated by with 5 crappy 0 levels back in the 70s and 80s, but surprisingly still found work very easily - I doubt the current generation will have such an easy ride. Did manage to do a lot of travelling though - it was just starting to get cool in the 70s/80s.
I think the bunch of poor sods who got their mickey mouse degrees under the last labour government are now finally managing their expectations re where their media studies or social studies degree actually gets them and are getting a job - any job. I worry that I have oversold to Callum - but see that he has formed a broad social circle is popular and intelligent and think thus that Uni has been worth it and with a decent work ethic he should be ok. The management bullshit may run deep in this one.
Just went down to the nurses station to get a cup of chocolate - and walking back was looking through some of the other patients windows. Everybody looks completely shattered just laying back prone and sleeping. Wish I could get some of that. I'm downloading Abbey Road fancy a bit of that, must remember to back all this up.
Wow - 8402 page views at close of business today! Welcome to my two new readers from Nigeria and Kazhakstan! I am flummoxed that this tosh gets looked at so much. Still think I should have done something with Jezza Bingo from last year though....
So got more hot chocolate eating a bag of nuts and raisin trail mix and waiting for tiredness.
laters sleepyheads.
4am wake up! Must sleep during the course of today it's truly bizarre I've got into this pattern of 90 minutes on 90 minutes off. So now listening to some Mike Oldfield in the hope it'll lull me off. When I wake now I'm immediately aware that my cheek is throbbing from where my teeth have pushed into the cheek ulcers whilst I am asleep - its very disappointing to be getting these little bastards back but if I had the choice between this and the colitis and trots I know which I'd be choosing! when I was here last year the ward was chocker this year it appears about 25% empty and the punters are a lot older - theres only one other below 60 I'd hazard which is great if thety're all here for BMT as it shows a distinct change of tack. Mind you wonder how I'd cope if I were ten years older ....
T + 392.Concerning middle-aged fan-boys, music, newspapers and assorted chicken sauces.
Awake again bright and early curly wurly 0550 hrs. Slept maybe 2.5 hours last night so will be hoping to catch up a bit during the day.
I've been farting around a lot on Facebook looking at load of different pages and groups and have joined one that sounds like fun. One is called "Music from whatever the list says" it's a closed page so you have to ask to join but the premise of it is as follows:
You have to select fave tunes based on a list of 30 questions such as
It's only about 200 people and they seem to be from the US and UK mainly but as a music lover I've found it a great new way to be exposed to stuff both new and old that I'd never heard before. The 'list' appears to be the jumping off point to see how your taste fits and then folks pretty much just post stuff they like. Friendly board and a nice thing to stumble upon.
Another one is a fanboy site for a band I was crazy about in my twenties and who I have recently rediscovered via downloading their stuff from i-tunes. Be Bop Deluxe one of the great also rans from about '74 to '79. Made 6 albums had a great national following but never quite crossed over. There's a whole site of people my age and older all anorakking about the band and I frigging love it. What's the best album, guitar solo, track - real twatty bloke stuff and I can't get enough.
Reading the online newspapers Mail, Telegraph and Independent aiming for balanced views quite surprised to see that comments added to articles in the Indy on subjects like immigrants, benefit fiddlers etc not so dissimilar to Daily Mail readers - funny, in my head I had them down as a more lefty demographic.
As another measure of how bored I'm getting I even got round to filling out a Linked In profile to tell everybody how much middle management bullshit I know and got rather unnerved when I had 'evaluate my ...er skill set' and I slipped back into the old spiel so easily. It's not a world that I would be keen to re-enter even if it weren't now populated by pointy toothed, sharp elbowed, gimlet eyed twenty and thirty year olds with a keen sense of self entitlement and law degrees. I'd hazard that the working environment is a much more fraught place in which to start now than in the 70s/80s.
I think when I do regain my health I'll get a lot more satisfaction and a feeling of self respect from working with my hands for a fraction of the money I used to earn. Gardening, DIY, knocking over betting shops, benefit fraud - the kind of job that gives you a bit of self respect much better than attending endless meetings and feigning giving a flying fuck about the trajectory of someone's career structure and development plan within your department.
Had a visit from a dental specialist today to check my ulcers out - he agreed that they had progressed slightly but wants to stay on watch and wait. I can understand how they don't want to mess with the meds until a stable state is achieved - back to my crappy plate spinning simile of last week. He's prescribing me some lidocaine numbing paste to take the edge off if things go wonky and will be checking back on me early next week.
One of the nurses who looked after me last year is back on the ward (in fact she sat in and administered my transplant) she's called Nurse May and I think she is originally from China. Super experienced and someone in whom one can have complete trust. She came in yesterday to see me and to administer an ECG (electro cardiograph) which is a snapshot of the function of the heart taken from a series of sensors placed on the arms legs chest and ribs. So he came in with the machine and the sticky pads for arms legs chest etc with all the leads to connect to them. Stuck the pads on my forearms and then tutted when she saw my chest and when I removed the DVT stockings from my legs;
Me "Is there anything wrong May?"
May "Yeah is problem"
Me (worried) "Oh what's up?"
May " Can't do ECG on hairy man!"
Apparently it prevents contact with the skin and you can't get a signal. So I'm looking like I've had moths at the moment with little shaved bare patches here and there where the electrodes ended up - all good though heart healthy. Swab results back from last week indicate that I have a new virus YAY. Its called VRE (Vancomycin Resistant Enterococci) - I have colonisation rather than infection which is a benign format - no change to meds needed but I need to stay in isolation to prevent cross contamination to other BMT patients on the ward. So no change there then, apparently quite common in people with naff immune systems and means that it is resistant to certain more front line penicillins requiring the use of alternatives for treatment.
Just found this on wikipedia;
VRE can be carried by healthy people who have come into contact with the bacteria. The most likely place where such contact can occur is in a hospital (nosocmial infection). although it is also thought that a significant percentage of intensively farmed chicken also carry VRE. Well the only chickens I've seen in the past 3 weeks have been wearing cheese or sweet and sour sauce. So some bugger in here has lurgeyed me up!
I've been farting around a lot on Facebook looking at load of different pages and groups and have joined one that sounds like fun. One is called "Music from whatever the list says" it's a closed page so you have to ask to join but the premise of it is as follows:
You have to select fave tunes based on a list of 30 questions such as
- A tune that makes you feel strong emotions
- A cover version that is better than the original
- A song that makes you happy
- A song in a language other than English
As I say about 30 questions all told some of which really make you think - I've had multiple answers and end up weighing the relative values. For such a small group it seems very busy I had no idea FB could be used for stuff like this. So you fill out the list and then paste a selection to the wall for others to share and enjoy and comment on.
It's only about 200 people and they seem to be from the US and UK mainly but as a music lover I've found it a great new way to be exposed to stuff both new and old that I'd never heard before. The 'list' appears to be the jumping off point to see how your taste fits and then folks pretty much just post stuff they like. Friendly board and a nice thing to stumble upon.
Another one is a fanboy site for a band I was crazy about in my twenties and who I have recently rediscovered via downloading their stuff from i-tunes. Be Bop Deluxe one of the great also rans from about '74 to '79. Made 6 albums had a great national following but never quite crossed over. There's a whole site of people my age and older all anorakking about the band and I frigging love it. What's the best album, guitar solo, track - real twatty bloke stuff and I can't get enough.
 |
| Bill Nelson - Be Bop Deluxe.1977. |
As another measure of how bored I'm getting I even got round to filling out a Linked In profile to tell everybody how much middle management bullshit I know and got rather unnerved when I had 'evaluate my ...er skill set' and I slipped back into the old spiel so easily. It's not a world that I would be keen to re-enter even if it weren't now populated by pointy toothed, sharp elbowed, gimlet eyed twenty and thirty year olds with a keen sense of self entitlement and law degrees. I'd hazard that the working environment is a much more fraught place in which to start now than in the 70s/80s.
I think when I do regain my health I'll get a lot more satisfaction and a feeling of self respect from working with my hands for a fraction of the money I used to earn. Gardening, DIY, knocking over betting shops, benefit fraud - the kind of job that gives you a bit of self respect much better than attending endless meetings and feigning giving a flying fuck about the trajectory of someone's career structure and development plan within your department.
Had a visit from a dental specialist today to check my ulcers out - he agreed that they had progressed slightly but wants to stay on watch and wait. I can understand how they don't want to mess with the meds until a stable state is achieved - back to my crappy plate spinning simile of last week. He's prescribing me some lidocaine numbing paste to take the edge off if things go wonky and will be checking back on me early next week.
One of the nurses who looked after me last year is back on the ward (in fact she sat in and administered my transplant) she's called Nurse May and I think she is originally from China. Super experienced and someone in whom one can have complete trust. She came in yesterday to see me and to administer an ECG (electro cardiograph) which is a snapshot of the function of the heart taken from a series of sensors placed on the arms legs chest and ribs. So he came in with the machine and the sticky pads for arms legs chest etc with all the leads to connect to them. Stuck the pads on my forearms and then tutted when she saw my chest and when I removed the DVT stockings from my legs;
Me "Is there anything wrong May?"
May "Yeah is problem"
Me (worried) "Oh what's up?"
May " Can't do ECG on hairy man!"
Apparently it prevents contact with the skin and you can't get a signal. So I'm looking like I've had moths at the moment with little shaved bare patches here and there where the electrodes ended up - all good though heart healthy. Swab results back from last week indicate that I have a new virus YAY. Its called VRE (Vancomycin Resistant Enterococci) - I have colonisation rather than infection which is a benign format - no change to meds needed but I need to stay in isolation to prevent cross contamination to other BMT patients on the ward. So no change there then, apparently quite common in people with naff immune systems and means that it is resistant to certain more front line penicillins requiring the use of alternatives for treatment.
Just found this on wikipedia;
VRE can be carried by healthy people who have come into contact with the bacteria. The most likely place where such contact can occur is in a hospital (nosocmial infection). although it is also thought that a significant percentage of intensively farmed chicken also carry VRE. Well the only chickens I've seen in the past 3 weeks have been wearing cheese or sweet and sour sauce. So some bugger in here has lurgeyed me up!
Wednesday 19 March 2014
T + 393. My Kryptonite - Cyto Megalo Virus
Frigging Arseburger and Chips.
Just saw a couple of registrars who had some news for me. When I was admitted on 04/03/2014 the Cyto Megalo Virus count in my blood was 110,000. Yesterday it was 75,000 and today it is 64,000.
When I was previously ill last year with it I was told that at 66,000 it was high so I really was quite fucked by the time I finally caved and admitted myself to Kings College this time 59%ish of people in this country already have CMV virus inactive or partially dormant in your blood but due the majority of people having half decent immune systems you'd never know it.
For me being post chemo with new bone marrow and having not yet been re-vaccinated for anything, my immune system is what you might call 'shot away' and would struggle to fight off a kitten armed with bubble wrap. The upshot of this is that I probably will not be flying the coop here at Kings any time this week. Based on the figures above and this here calculation that I have made on the back of a fag packet, if the IV Ganciclovir that I'm being given is reducing the level by about 10,000 per day then it could be another week before it's at a level with which the team here are happy.
| Drug | Dosage | Type | Frequency | Used for | ||
| Ciclosporin | 150mg | Immuno supressant | Twice daily | Fights GVHD | ||
| Ganciclovir | Dunno | Anti-viral | Twice daily IV | Fights CMV | ||
| Budesonide | 3mg | Steroid | Thrice daily | Fights colitis | ||
| Prednisolone | 30mg | Steroid | Daily | Fights colitis | ||
| Folic Acid | 5mg | Vitamin B9 | Daily | Assists
to synthesise and repair DNA (for mouth ulcers) |
||
| Tacrolimus | Dunno | Immuno supressant | Twice
daily mouthwash |
Immuno supressant (for mouth ulcers) | ||
| Mycophenalate | 1g | Immuno supressant | Twice daily | increases
Oral Bioavailability (for mouth ulcers) |
||
| Betamethosone | 500mcg | steroid | Daily mouthwash | Anti
inflammatory immuno supressant (for mouth ulcers) |
||
| Posaconazole | 10mg | Antifungal | Twice daily | I think anti thrush | ||
| Pentamidine | 25mg
Vapourised inhaler |
Antimicrobial | Monthly | Prophylactic against Pneumocystis pneumonia |
||
| Zopiclone | 7.5mg | Nonbenzodiazipene hypnotic agent | Nightly | Sleeping tablet | ||
| Penicillin | 500mg | Antibacterial | Twice daily | Prophylactic antibacterial | ||
| Omeprazole | 20mg | Proton pump inhibitor | Twice daily | Anti-acid indigestion | ||
Edit: re the reference to 'dirty' drugs above - here I mean this in terms of 'its a dirty job but someone's gotta do it'. In that the drugs themselves are cytotoxic - cell destructive, to me this means that in order to achieve their primary objective which is the destruction of disease A or infection B there's gonna be some innocent bystanders caught in the crossfire, meaning other bits of your (or in this case my) body.
A bit like being one of the guys in the red Star Trek jerseys.
T + 392. Heads Up Georgie Porgie
Not a new story for the NHS but worth re-telling.
Chatting with a nurse this morning (Tues 18/03) and we got talking about the 40% tax rate - nurse specialists working in the NHS attract a higher salary due to the level of expertise they bring to the role. This is nothing like the salary that they would be paid for example, in Australia where there would be a 25-40% premium on the wage paid here, which accounts in part for the NHS staff here flocking there everybody knows someone who's off.
When rostered to overtime on top of what may be quite habitually be a 4 day 12 hour shift nurses usually find that resultant extra wages push them into the 40% band - not a great incentive to extend already long hours. The OT roster is posted in the expectation that staff will want to do the hours and claim the OT they want by populating it in advance. As stated the existing long shifts and the 40% tax bracket are proving to be a disincentive to some nurses to do this. Now here's the silly bit if NHS nurses can't be rostered to do the OT guess who is called on to fill the places? Yep the jolly old private sector who will ship contract nurses to cover the shift. Although these nurses may have the relevant experience in the area in which he/she is specialist, they're not going to know the ward to which they are sent and may not be able to "hit the ground running". They will also cost a considerable amount more than paying overtime for the existing staff and we're talking A LOT.
The Gov/NHS seem to be shooting themselves in the foot on this one. Why not move the threshold for the 40% allowance or do something to incentivise the staff - tax credits for specialised skills in nursing, anything to help stem the brain drain.The NHS will save money on contract nurses and better reuse of existing highly trained staff - and at a squeak if they got really stuck , contract services could still be used, but as a last resort rather than pissing money away as the norm.
This is just one example of what must be thousands - a microcosm. Beats me why this beleaguered service has to tie itself in knots this way to satisfy the bean counters and middle management twats - and being an ex-middle management twat myself I've seen some fine examples of moving the deck chairs around on the Titanic to make the columns line up. Will be listening keenly this afternoon to see what "Anaglypta George" has to say.
Bizarre - the drugs must play havoc with blood pressure I've been running quite heavy at up to 150/100. Sat in a hot shower for half an hour today before having medical observations taken on morning rounds and it was down to 127/80 lower than when I used to do gym 3 times per week.
Playing a game of sit and wait at the moment need to see if my bloods show the CMV levels decreasing over the next couple of days. Otherwise I won't be getting out of here this week. Not stir crazy yet as I've been able to leave the room and get outside for a couple of walks but want to get home to the family quite badly now. Very aware though that to leave too early will undo all the progress made so far.
Chatting with a nurse this morning (Tues 18/03) and we got talking about the 40% tax rate - nurse specialists working in the NHS attract a higher salary due to the level of expertise they bring to the role. This is nothing like the salary that they would be paid for example, in Australia where there would be a 25-40% premium on the wage paid here, which accounts in part for the NHS staff here flocking there everybody knows someone who's off.
When rostered to overtime on top of what may be quite habitually be a 4 day 12 hour shift nurses usually find that resultant extra wages push them into the 40% band - not a great incentive to extend already long hours. The OT roster is posted in the expectation that staff will want to do the hours and claim the OT they want by populating it in advance. As stated the existing long shifts and the 40% tax bracket are proving to be a disincentive to some nurses to do this. Now here's the silly bit if NHS nurses can't be rostered to do the OT guess who is called on to fill the places? Yep the jolly old private sector who will ship contract nurses to cover the shift. Although these nurses may have the relevant experience in the area in which he/she is specialist, they're not going to know the ward to which they are sent and may not be able to "hit the ground running". They will also cost a considerable amount more than paying overtime for the existing staff and we're talking A LOT.
The Gov/NHS seem to be shooting themselves in the foot on this one. Why not move the threshold for the 40% allowance or do something to incentivise the staff - tax credits for specialised skills in nursing, anything to help stem the brain drain.The NHS will save money on contract nurses and better reuse of existing highly trained staff - and at a squeak if they got really stuck , contract services could still be used, but as a last resort rather than pissing money away as the norm.
 |
| Not sure about that wallpaper mate. |
This is just one example of what must be thousands - a microcosm. Beats me why this beleaguered service has to tie itself in knots this way to satisfy the bean counters and middle management twats - and being an ex-middle management twat myself I've seen some fine examples of moving the deck chairs around on the Titanic to make the columns line up. Will be listening keenly this afternoon to see what "Anaglypta George" has to say.
Bizarre - the drugs must play havoc with blood pressure I've been running quite heavy at up to 150/100. Sat in a hot shower for half an hour today before having medical observations taken on morning rounds and it was down to 127/80 lower than when I used to do gym 3 times per week.
Playing a game of sit and wait at the moment need to see if my bloods show the CMV levels decreasing over the next couple of days. Otherwise I won't be getting out of here this week. Not stir crazy yet as I've been able to leave the room and get outside for a couple of walks but want to get home to the family quite badly now. Very aware though that to leave too early will undo all the progress made so far.
Tuesday 18 March 2014
T + 392 Fun with Q Tips.
It's fricking crazy 11mg (yeah U know I stashed one) of Zopiclone and awake again at 1.00am having been rendered stupid enough to eat a rice krispy marshmallow bar - texture of a breeze block on my ulcers but too stupid to complete even the most elementary of Sudoku puzzles on my Nintendo DS, I think I just sat here looking at the pretty numbers...
Going to sit here and type out the brain farts until I can finally sleep. I can foresee a week or so of cold turkey from Zopiclone when I go home. It's not pleasant but I've done it before the pleasure of once again attaining natural sleep is worth a few days maybe weeks of disruption. Bored now.
Oh here we go set of swabs to do for weekly virus tests, 3 big Q-tips one for nose, one for throat and one for groin. Done and dusted and delivered also managed to scrounge a cup of hot cocoa while I was down there at the nurses station at the end of the ward.
Remembered another story from when I first checked in last week down in the chemo area (back room with the nurses at HOPS - Haemotology Out Patients). I had the rats because at the time I was in a shedload of gut pain and had been for weeks and had ended up having to wait for four hours while they juggled to find me a bed, first it was to be Davidson Ward then Waddington so I just sat hunched up and grey faced wishing the minutes away. Then a nurse appeared with a fistful of swabs and I tried vainly to remember where they went. Nose, Throat, Groin and lastly the Clacker for MRSA. So we did the first three and I said;
"This one in the bottom then?"
She looked at me said "No nose again this one"
"Oh OK"
Then another " Right this one then up the bum?"
Stark look "This one throat again"
I thought I needed to retrieve the situation -
"I hope you're not getting the wrong idea here I'm not fixated with sticking them all up my bum "- lame pervy sounding snigger.
She handed me the last one "We only do one weekly MRSA and that's this last one"
Me " er... bum then?"
Nurse " To your hearts content" - big grin she had definitely made her mind up about me.
Ok 3am been spunking money on i-tunes buying up old 70's bands albums I've only got on vinyl otherwise, all the Be bop Deluxe, Tubeway Army, Ritchie Blackmore's Rainbow. Did a custom playlist to show all the tracks I've actually purchased through i-tunes over the years and was staggered to find its 650+ I mean SHIT that's a lot of money on music.
Sleepy now may get a couple of hours.
I did until 5.08am so time for crisps and listening to all the music I just bought. Should have brought headphones with me like last time - as I tell Milo in the car ear damage is a small price to pay for the appreciation of good music. His eldest brother got away with it as I only had partial weekend custody while he was growing hence his music tastes were minimally influenced by me and are/were 90s onward and not the good stuff, Hip hop club street the wave of turd that washed away the previous 35 years of musicianship and songwriting. So with Milo I want at least to give him the choice of experiencing music from the 60s onwards as I did so that he can form his own personal tastes as opposed to the very disposable music that kids are sold today. Have to admit though that one of our bangers in the car is "Fight for your right to party" by the Beastie Boys.
Even though he will come to find his own tastes in music as he matures I would like Milo to experience the Beatles, Stones, Motown, Beach Boys through to 70s Rock and Punk, 80s New Wave and New Romantics and I think we'll get at far as grunge and mid nineties Brit Pop. After this I think the scene just disappeared up it's own arse and started all over again. My musical tastes were informed my parents stuff from the sixties and the love of it has never left me. I hope to pass it on.
Off for shower and brekkers before they hook me up to the infuser again. I found that after I sat in the shower for 30 minutes yesterday that my blood pressure dropped from 150/96 down to 138/85 - not far off my pre-transplant norm - so they really do relax you and at least temporarily counteract the raising effect of all the meds. I'd guess ciclosporin is the guilty party here.
Going to sit here and type out the brain farts until I can finally sleep. I can foresee a week or so of cold turkey from Zopiclone when I go home. It's not pleasant but I've done it before the pleasure of once again attaining natural sleep is worth a few days maybe weeks of disruption. Bored now.
Oh here we go set of swabs to do for weekly virus tests, 3 big Q-tips one for nose, one for throat and one for groin. Done and dusted and delivered also managed to scrounge a cup of hot cocoa while I was down there at the nurses station at the end of the ward.
Remembered another story from when I first checked in last week down in the chemo area (back room with the nurses at HOPS - Haemotology Out Patients). I had the rats because at the time I was in a shedload of gut pain and had been for weeks and had ended up having to wait for four hours while they juggled to find me a bed, first it was to be Davidson Ward then Waddington so I just sat hunched up and grey faced wishing the minutes away. Then a nurse appeared with a fistful of swabs and I tried vainly to remember where they went. Nose, Throat, Groin and lastly the Clacker for MRSA. So we did the first three and I said;
"This one in the bottom then?"
She looked at me said "No nose again this one"
"Oh OK"
Then another " Right this one then up the bum?"
Stark look "This one throat again"
I thought I needed to retrieve the situation -
"I hope you're not getting the wrong idea here I'm not fixated with sticking them all up my bum "- lame pervy sounding snigger.
 |
| I'm not gonna lie people - it hurt. |
She handed me the last one "We only do one weekly MRSA and that's this last one"
Me " er... bum then?"
Nurse " To your hearts content" - big grin she had definitely made her mind up about me.
Ok 3am been spunking money on i-tunes buying up old 70's bands albums I've only got on vinyl otherwise, all the Be bop Deluxe, Tubeway Army, Ritchie Blackmore's Rainbow. Did a custom playlist to show all the tracks I've actually purchased through i-tunes over the years and was staggered to find its 650+ I mean SHIT that's a lot of money on music.
Sleepy now may get a couple of hours.
I did until 5.08am so time for crisps and listening to all the music I just bought. Should have brought headphones with me like last time - as I tell Milo in the car ear damage is a small price to pay for the appreciation of good music. His eldest brother got away with it as I only had partial weekend custody while he was growing hence his music tastes were minimally influenced by me and are/were 90s onward and not the good stuff, Hip hop club street the wave of turd that washed away the previous 35 years of musicianship and songwriting. So with Milo I want at least to give him the choice of experiencing music from the 60s onwards as I did so that he can form his own personal tastes as opposed to the very disposable music that kids are sold today. Have to admit though that one of our bangers in the car is "Fight for your right to party" by the Beastie Boys.
Even though he will come to find his own tastes in music as he matures I would like Milo to experience the Beatles, Stones, Motown, Beach Boys through to 70s Rock and Punk, 80s New Wave and New Romantics and I think we'll get at far as grunge and mid nineties Brit Pop. After this I think the scene just disappeared up it's own arse and started all over again. My musical tastes were informed my parents stuff from the sixties and the love of it has never left me. I hope to pass it on.
Off for shower and brekkers before they hook me up to the infuser again. I found that after I sat in the shower for 30 minutes yesterday that my blood pressure dropped from 150/96 down to 138/85 - not far off my pre-transplant norm - so they really do relax you and at least temporarily counteract the raising effect of all the meds. I'd guess ciclosporin is the guilty party here.
Monday 17 March 2014
T + 391. He's gone a bit Roy Orbison.
17/03/2014
Haemoglobin: tba
WBC:
Platelets:
Neuts:
Weight: 60.1 kg
Ewwwww- the cannula in my left forearm failed about 3am this morning I was being given a phosphate drip overnight - you can kind of sleep through it. But I blinked awake feeling rather moist it was like I'd been set up that in that trick where someone puts your hand in a bowl of warm water when you are asleep and you pee yourself. After a couple of episodes this time last year where I had heavy bleeds in the night due to low platelets I wasn't particularly able to exclude any/or all bodily fluids being involved - so I got the light on double bloody quick and checked my bad self out. Phew - just loads of leaked phosphate salts and a little blood. Nurse Becky got me mopped up and changed the bed sheets - good as new. Got the cannula replaced to a more comfortable spot as well.
Normally when you are admitted for treatment on this ward you would be pre-fitted with a Hickman line which goes in the upper right chest and gives the team 3 ports to drip feed direct into the aorta (I think). Seeing as I'm not here long term I've got a cannula (one feed forearm or hand) which has to be moved to a new spot every 3rd day. As there's only one feed they have to keep it in use for about 12+ hours a day which isn't so great but y'know - it's got to be done - and having a Hickman is quite a big thing to live with.
Had a visit from my Consultant Victoria Potter and a group of 3 registrars plus a nurse this afternoon so my tiny room was pretty much crammed with 5 females standing around the bed while I spoke with Victoria about how things have been going and she in turn updated me. Given my condition when admitted just under two weeks ago I am feeling a couple of thousand per cent better now - the only gripe is a small resurgence of mouth ulcers from where the mycophenylate was dropped.
But on a deeper level I must've been concerned about more than I was prepared to consciously acknowledge. I brought up two things first wtf (not literally) with my platelets - lowest they've been since chemo and that's been with infusions topping up my existing levels and the other brain worm, the results of my bone marrow biopsy. Someone dropped a penny in my well last week that I didn't pick up on at first - but it was something along the lines of 'even if your chimerism is at 100%, it can sometimes drop back' ie there's a chance that some MDS ridden bone marrow may regrow. Now I think I just dismissed this out of hand at the time because it wasn't something I wanted to hear. But it never completely went away.
Anyway back to this afternoon, the low platelets is down to me receiving large doses of ganciclovir by IV. Turns out that if I did have gut GVHD, it's now gone and the culprit responsible for all my recent lavatorial slapstick is that little fucker the CMV virus. Fortunately my levels look to be dropping and I'm responding to the IV therapy which 'is nice'.
So the next bit was about the bone marrow biopsy and as Victoria started to talk I phased a bit found myself inexplicably getting very choked up and a bit bleary eyed. Not a clue where it came from but all I could think of for the next minute or so was keeping my face contorted as to not show any emotion and "Keep your shit together and stiff upper lip now chap - you can't blub in front of all the ladeez". What a turd.
The upshot of which is that my bone marrow still tests at 100% chimerism and if my CMV levels continue to drop I could be going home at the end of this week.
BOO (and I believe) YAH MOTHERFUNSTERS.
Haemoglobin: tba
WBC:
Platelets:
Neuts:
Weight: 60.1 kg
Ewwwww- the cannula in my left forearm failed about 3am this morning I was being given a phosphate drip overnight - you can kind of sleep through it. But I blinked awake feeling rather moist it was like I'd been set up that in that trick where someone puts your hand in a bowl of warm water when you are asleep and you pee yourself. After a couple of episodes this time last year where I had heavy bleeds in the night due to low platelets I wasn't particularly able to exclude any/or all bodily fluids being involved - so I got the light on double bloody quick and checked my bad self out. Phew - just loads of leaked phosphate salts and a little blood. Nurse Becky got me mopped up and changed the bed sheets - good as new. Got the cannula replaced to a more comfortable spot as well.
Normally when you are admitted for treatment on this ward you would be pre-fitted with a Hickman line which goes in the upper right chest and gives the team 3 ports to drip feed direct into the aorta (I think). Seeing as I'm not here long term I've got a cannula (one feed forearm or hand) which has to be moved to a new spot every 3rd day. As there's only one feed they have to keep it in use for about 12+ hours a day which isn't so great but y'know - it's got to be done - and having a Hickman is quite a big thing to live with.
Had a visit from my Consultant Victoria Potter and a group of 3 registrars plus a nurse this afternoon so my tiny room was pretty much crammed with 5 females standing around the bed while I spoke with Victoria about how things have been going and she in turn updated me. Given my condition when admitted just under two weeks ago I am feeling a couple of thousand per cent better now - the only gripe is a small resurgence of mouth ulcers from where the mycophenylate was dropped.
But on a deeper level I must've been concerned about more than I was prepared to consciously acknowledge. I brought up two things first wtf (not literally) with my platelets - lowest they've been since chemo and that's been with infusions topping up my existing levels and the other brain worm, the results of my bone marrow biopsy. Someone dropped a penny in my well last week that I didn't pick up on at first - but it was something along the lines of 'even if your chimerism is at 100%, it can sometimes drop back' ie there's a chance that some MDS ridden bone marrow may regrow. Now I think I just dismissed this out of hand at the time because it wasn't something I wanted to hear. But it never completely went away.
Anyway back to this afternoon, the low platelets is down to me receiving large doses of ganciclovir by IV. Turns out that if I did have gut GVHD, it's now gone and the culprit responsible for all my recent lavatorial slapstick is that little fucker the CMV virus. Fortunately my levels look to be dropping and I'm responding to the IV therapy which 'is nice'.
 |
| your blogger - seen earlier today |
The upshot of which is that my bone marrow still tests at 100% chimerism and if my CMV levels continue to drop I could be going home at the end of this week.
BOO (and I believe) YAH MOTHERFUNSTERS.
Sunday 16 March 2014
T + 390. Space Hopper Walkies.
Sunday. 16/03/2014
Allowed out of the isolation ward for walkies in the sunshine today, so I'll go have a stroll down Camberwell High Street/ New Road. Must remember to to indulge in some local pastimes;
1) Send some money home via Western Union.
2) Go betting
3) Have a look round Junkie Bank (Cash Converters)
4) Stock up on Quat (Khat?)
5) Get some pay day loans.
6) Have a Morleys/Nanados/McDs and Greggs
7) Pawn my Blackberry
8) Throw rubbish on the street - might even spit.
Funny to think that I lived and grew up in this kind of area for 40-odd years and never quite realised what a craphole it is until I moved to the country. Whenever I have to travel back there is almost an element of claustrophobia involved as the trees and fields make way for the great black fried egg that is London.
Looks like all that fun will have to wait. My hands have started to do the claw again - I'm sitting here with my fingers splayed out like a gecko - so it looks like I'm getting a bag of salts infused to sort the cramps. Bollocks. I have an update on this - doc tells me that ganciclovir and valganciclovir (which I'm having to treat CMV) can deplete essential salts which can lead to cramps.
So after the salts are in I'm determined to get out and go for a walk just to try and help me sleep tonight because the sleepers aren't doing it for me and I really don't want to go down the path of increasing the dosage....oh and I am actually gagging for some junk food as well.
There was a story that I had wanted to pass on - which had slipped my mind, from the first day I went over to Guys Hospital last week (Weds?). The ambulance had pulled back into the Kings and we were queueing to get to the front door so I could be dropped off. I'd been chatting away to the driver all the way back when he said;
"See this? This is what pisses me off."
"What - the queueing?"
"Nah - you see that woman over there?"
He nodded his head to indicate a lady of larger (no let's be honest) - distinctly space hopper appearance in sporting wear who was working her way down the stairs outside the hospital.
"Her? What about her?"
"She gets driven here 3 times a week, hour and a half each way for free."
"What - because she's fat and mobility disabled?"
"Do you think she looks it?"
Actually she wasn't having much problem moving around, in spite of her size - she reached the bottom of the stairs and stood looking expectantly about her...then reached into her pocket for her mobile and started texting/surfing.
Driver - "To get free travel she claims that she is so blind that she can't get here by herself using the train or bus because it would put her in danger. She sat in here and laughed about it."
Looking at her it occurred to me that the only way her eyesight would be a hazard to anyone would be if she didn't see you were already on a chair and sat on you.
Testament to the incredible job the NHS still does in the teeth of disgusting self interest like this.
I really do f**king hate people sometimes.
Allowed out of the isolation ward for walkies in the sunshine today, so I'll go have a stroll down Camberwell High Street/ New Road. Must remember to to indulge in some local pastimes;
1) Send some money home via Western Union.
2) Go betting
3) Have a look round Junkie Bank (Cash Converters)
4) Stock up on Quat (Khat?)
5) Get some pay day loans.
6) Have a Morleys/Nanados/McDs and Greggs
7) Pawn my Blackberry
8) Throw rubbish on the street - might even spit.
Funny to think that I lived and grew up in this kind of area for 40-odd years and never quite realised what a craphole it is until I moved to the country. Whenever I have to travel back there is almost an element of claustrophobia involved as the trees and fields make way for the great black fried egg that is London.
Looks like all that fun will have to wait. My hands have started to do the claw again - I'm sitting here with my fingers splayed out like a gecko - so it looks like I'm getting a bag of salts infused to sort the cramps. Bollocks. I have an update on this - doc tells me that ganciclovir and valganciclovir (which I'm having to treat CMV) can deplete essential salts which can lead to cramps.
So after the salts are in I'm determined to get out and go for a walk just to try and help me sleep tonight because the sleepers aren't doing it for me and I really don't want to go down the path of increasing the dosage....oh and I am actually gagging for some junk food as well.
There was a story that I had wanted to pass on - which had slipped my mind, from the first day I went over to Guys Hospital last week (Weds?). The ambulance had pulled back into the Kings and we were queueing to get to the front door so I could be dropped off. I'd been chatting away to the driver all the way back when he said;
 |
| A lady - yesterday |
"See this? This is what pisses me off."
"What - the queueing?"
"Nah - you see that woman over there?"
He nodded his head to indicate a lady of larger (no let's be honest) - distinctly space hopper appearance in sporting wear who was working her way down the stairs outside the hospital.
"Her? What about her?"
"She gets driven here 3 times a week, hour and a half each way for free."
"What - because she's fat and mobility disabled?"
"Do you think she looks it?"
Actually she wasn't having much problem moving around, in spite of her size - she reached the bottom of the stairs and stood looking expectantly about her...then reached into her pocket for her mobile and started texting/surfing.
Driver - "To get free travel she claims that she is so blind that she can't get here by herself using the train or bus because it would put her in danger. She sat in here and laughed about it."
Looking at her it occurred to me that the only way her eyesight would be a hazard to anyone would be if she didn't see you were already on a chair and sat on you.
Testament to the incredible job the NHS still does in the teeth of disgusting self interest like this.
I really do f**king hate people sometimes.
Saturday 15 March 2014
T + 389. Inn vitch I meezt meinen doppelganger - ja
15/03/2014
Haemoglobin 107
White Blood Cells 2.9
Platelets 47
Neutrophils 3.23
Weight 63kg
The blog site view counter passed 8050 views in the night which came as a surprise as it was only ever started to keep 20 or so family and friends in the picture re the original treatment. In the 13/14 months since transplant and then starting the blog and the 68 months since diagnosis I realize I once carried a very short-termist outlook in my attitude to MDS in the early days and would quite naturally forget I had it - until fatigue kicked in and the dashboard lights started flickering. I was able to work for a further 41 months whilst commuting between Battle and London - roughly four hours travel a day and twelve overall.
I had very much convinced myself that by keeping fit, doing weights, supplements and pushing my body to be in the best condition possible that I would ace the whole situation - especially when my sister was found to be such a great donor match and although there were nearly four and a half years between diagnosis and transplant, ridiculously now, I can remember wishing that things would accelerate so that I could get to the BMT stage faster. This I can now freely admit is absolutely moronic as it distracted me from living a perfectly good present.
Depending on age going in, health, the obvious advances in medical technique and I think just dumb shit luck many more people now achieve recovery/remission - but none of this is reason to wish away your time pre BMT the life change package is wholesale believe me and not just for a week or a month after chemo.
Now something quite rum happened to me earlier today so read on and cheer up.
This morning I had to go over to another section in the hospital to have some pictures done of the GVHD ulcers on the inside of my mouth. They'll be used for comparative illustration purposes in case they come back and/or worsen and also -when anonymised, will be used for training materials by the students in the dental college as although ORAL GVHD isn't rare in BMT recovery, the whole BMT thing is rare and specialised enough in and of itself to be of interest.
Failing that the HGV drivers in France are welcome to use them to scare the Albanians out of the backs of their trucks.
At my ward I insisted that I could walk perfectly well and would welcome the exercise, but you have to be wheeled everywhere around the here by a porter. Anyroad we eventually found the lab in the basement of a building across from my ward block and at least I got to go out in the sun. It's weird how quickly you can get used to being outside in daytime in your pyjamas, - I like to pretend to catch and eat the odd imaginary fly just to keep the rest of the punters at a distance - this is South London after all.
The porter took me to wait for my turn to be photographed - there was one other lady in the waiting area.
He knocked on the door;
"Got Mr Storey for you here"
The door peeled back and a woman of about thirty emerged looking unnerved .
"Nicholas Storey?" she said - distractedly.
Porter "Yep - here" nods down to indicate me.
Oy oy I thought - news travels fast.
"But he's already here being photographed!"
This sounded like fun.
Me - "Really - can I see him?"
The porter looked askance at me - I could see he was wondering what sort of ward he'd just collected me from.
We all turned (including the other lady) and craned our heads across the corridor to the door the receptionist was indicating. She walked across the corridor and swung the open the door talking animatedly as she entered, - the rest of us shuffled over to have a look in and, sitting in a wheel chair, was a tiny wizened old man wearing thick glasses, huge owlish, blinking dark pupils, completely bald apart from a couple of white patches behind each ear. He really was a very old and his head looked like a baby bird's. Lordy.
This image wasn't at all helped by the fact that he was gimped up holding a couple of clear plastic retractors to his lips to pull his mouth open as wide as possible so that the photographer could get snaps inside his mouth. He clearly did not have a Scooby why (but like all of us in hospital obviously had faith that someone did).
"Hello Nick" I said and gave him a wave. The door closed - hard- and we trooped across the narrow corridor to the waiting area. The porter was bleeped and headed off double quick still not entirely sure who was who. I feel a little embarrassed to say now that I dissolved into wet sniggers when it dawned on me that on top of it all, the guy had been Indian or East Asian. What the bloody hell was his name Nikram Storesh? Nikesh Staru the mistake was just too bizarre. Turns out not at all. Even though in-patients are barcoded and QR'd up to the chin this was just one of those instances where they were expecting a guy at 0930 for mouth shots- were given a guy at 0930 and so gave him mouth shots - a rare mistake- but for me just the cheering up I needed. I really thought I was going to meet a noble alter ego or the non evil twin.
He was out 10 minutes later having had (I think) his swollen wrists, ankles and manky nails documented for posterity. We had a sweet and gentle chat while I was waiting for my turn and I showed him how to flash his QR patch for the barcode readers so they'd know it was him. Looked fuck all like me though. Very polite old school chap - lovely.
My shots were done in the next 20 minutes and I got to have a go with the mouth calipers and the gimping
(I think she gave a new set) so I left him there waiting for his porter and took a slow walk back to the ward via the sunshine and the shop. Where I filled up on more crap food. I have definitely developed a weird food streak since being back in here, with more mouth ulceration you would think that prawn cocktail or super ridgy steak crisps might be to be avoided but I crave the acidic salty little bastards no end and sit here in floods of tears coaxing them down. Pure masochism.
Haemoglobin 107
White Blood Cells 2.9
Platelets 47
Neutrophils 3.23
Weight 63kg
The blog site view counter passed 8050 views in the night which came as a surprise as it was only ever started to keep 20 or so family and friends in the picture re the original treatment. In the 13/14 months since transplant and then starting the blog and the 68 months since diagnosis I realize I once carried a very short-termist outlook in my attitude to MDS in the early days and would quite naturally forget I had it - until fatigue kicked in and the dashboard lights started flickering. I was able to work for a further 41 months whilst commuting between Battle and London - roughly four hours travel a day and twelve overall.
I had very much convinced myself that by keeping fit, doing weights, supplements and pushing my body to be in the best condition possible that I would ace the whole situation - especially when my sister was found to be such a great donor match and although there were nearly four and a half years between diagnosis and transplant, ridiculously now, I can remember wishing that things would accelerate so that I could get to the BMT stage faster. This I can now freely admit is absolutely moronic as it distracted me from living a perfectly good present.
Depending on age going in, health, the obvious advances in medical technique and I think just dumb shit luck many more people now achieve recovery/remission - but none of this is reason to wish away your time pre BMT the life change package is wholesale believe me and not just for a week or a month after chemo.
Now something quite rum happened to me earlier today so read on and cheer up.
This morning I had to go over to another section in the hospital to have some pictures done of the GVHD ulcers on the inside of my mouth. They'll be used for comparative illustration purposes in case they come back and/or worsen and also -when anonymised, will be used for training materials by the students in the dental college as although ORAL GVHD isn't rare in BMT recovery, the whole BMT thing is rare and specialised enough in and of itself to be of interest.
Failing that the HGV drivers in France are welcome to use them to scare the Albanians out of the backs of their trucks.
At my ward I insisted that I could walk perfectly well and would welcome the exercise, but you have to be wheeled everywhere around the here by a porter. Anyroad we eventually found the lab in the basement of a building across from my ward block and at least I got to go out in the sun. It's weird how quickly you can get used to being outside in daytime in your pyjamas, - I like to pretend to catch and eat the odd imaginary fly just to keep the rest of the punters at a distance - this is South London after all.
The porter took me to wait for my turn to be photographed - there was one other lady in the waiting area.
He knocked on the door;
"Got Mr Storey for you here"
The door peeled back and a woman of about thirty emerged looking unnerved .
"Nicholas Storey?" she said - distractedly.
Porter "Yep - here" nods down to indicate me.
Oy oy I thought - news travels fast.
"But he's already here being photographed!"
This sounded like fun.
Me - "Really - can I see him?"
The porter looked askance at me - I could see he was wondering what sort of ward he'd just collected me from.
We all turned (including the other lady) and craned our heads across the corridor to the door the receptionist was indicating. She walked across the corridor and swung the open the door talking animatedly as she entered, - the rest of us shuffled over to have a look in and, sitting in a wheel chair, was a tiny wizened old man wearing thick glasses, huge owlish, blinking dark pupils, completely bald apart from a couple of white patches behind each ear. He really was a very old and his head looked like a baby bird's. Lordy.
This image wasn't at all helped by the fact that he was gimped up holding a couple of clear plastic retractors to his lips to pull his mouth open as wide as possible so that the photographer could get snaps inside his mouth. He clearly did not have a Scooby why (but like all of us in hospital obviously had faith that someone did).
"Hello Nick" I said and gave him a wave. The door closed - hard- and we trooped across the narrow corridor to the waiting area. The porter was bleeped and headed off double quick still not entirely sure who was who. I feel a little embarrassed to say now that I dissolved into wet sniggers when it dawned on me that on top of it all, the guy had been Indian or East Asian. What the bloody hell was his name Nikram Storesh? Nikesh Staru the mistake was just too bizarre. Turns out not at all. Even though in-patients are barcoded and QR'd up to the chin this was just one of those instances where they were expecting a guy at 0930 for mouth shots- were given a guy at 0930 and so gave him mouth shots - a rare mistake- but for me just the cheering up I needed. I really thought I was going to meet a noble alter ego or the non evil twin.
He was out 10 minutes later having had (I think) his swollen wrists, ankles and manky nails documented for posterity. We had a sweet and gentle chat while I was waiting for my turn and I showed him how to flash his QR patch for the barcode readers so they'd know it was him. Looked fuck all like me though. Very polite old school chap - lovely.
My shots were done in the next 20 minutes and I got to have a go with the mouth calipers and the gimping
(I think she gave a new set) so I left him there waiting for his porter and took a slow walk back to the ward via the sunshine and the shop. Where I filled up on more crap food. I have definitely developed a weird food streak since being back in here, with more mouth ulceration you would think that prawn cocktail or super ridgy steak crisps might be to be avoided but I crave the acidic salty little bastards no end and sit here in floods of tears coaxing them down. Pure masochism.
Thursday 13 March 2014
T + 387. To Paraphrase Carly Simon 'Your slow veins'
One other bit of news I had yesterday is that I have to go back on the Pentamidine inhalers once a month, this is to treat a very specific type of pneumonia to which low immunity sufferers are prone. Originally I was quite pleased to leave these behind and take a pill called Strepsin instead because Pentamidine - although a life saver tastes like leper cheese and makes you want to turn your mouth inside out over your head. Strepsin though, may be the reason that my platelets have started getting stepped on and as I'm red lining on 3 separate immuno-suppressants - with more being added, so I'm going to cut my losses and smell the cheese - choose life.
Midnight Weds/ThursMorning - More sleep deprived night time gabbling, waking up partway through a dream to a conversation I'm having with no-one in the room. Laptop on - I can easily see how the sheer diverse range of entertainment content online keeps kids pinned indoors on PCS and drives them batshit with sleep deprivation.
Came across a fascinating blog today called http://sometimes-interesting.com/ These guys are urban/industrial explorers with a special interest in abandoned military, industrial, theme parks, holiday resorts and ghost towns across the world. With land so tight and at a premium in the UK and people crawling over each other like puppies in a basket to get here, it kind of boggles the mind that the rest of the world seems to have so much space that it just leaves vast tracts of brown land filled with venerable old buildings to be ivy split and sand blasted out of existence. Detroit is mind blowing and looks a bit like a set for a videogame
 |
| Better get that baby goop down ya double quick fella |
Felt most sorry of all for the guys running the dept - they were mobbed today - all 6 machines running full tilt and a waiting room full of fresh punters. We all sit up in the air on dentist chairs with clear plastic tubes plumbed into our forearms and once the process starts you ideally need to keep your arms as still as possible to maximise the blood extraction flow to 50ml per minute. Problem is if you kink your veins or the tubes move and the flow drops too much the machine sets off an alarm which needs to be reset before it will continue running so it's a real pain in the a**e for the nurses if it plays up. There is a weird kind of ceremony to it all which has become evident over the weeks I have attended. The first thing is to get as much tea, coffee, food and hydration into ones faces as quickly as possible and set up ipods or e-books before being hooked up to the machines. Once you are hooked up you're pretty much stuck in one position until the blood has been gathered into the machine (1 - 2 hours). Then you get one arm back as two tubes now get plumbed into the left arm for the return of the photo activated blood. Oh but before that the light sensitising meds are injected into the bag of cells and if it's a sunny day, this is he point where we all don our sunglasses in unison like some kind of crappy raddled terminators. Otherwise you can end up with incredibly sensitive skin and eyes for the next 12 hours. May need sun block in summer.
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