Bloods - Jolly good thanks for asking.
GvHD - appears under control, ciclosporin back up to 125mgs BD
CMV - count 4,000 and rising. Under observation, started 900mgs BD valganciclovir a week ago.
Well having just read back the last entry from July, I can advise that things did get a bit shittier before they got better. At one point I was down to around 9st (126lbs) before it was confirmed that I had GvHD affecting both ends of the GI system and my ciclosporin was upped. At time of writing I've clawed my way back to 9st 10lbs and have a pretty healthy appetite for the first time in about 6 months - I'm also on high calorie milkshakes up to four times a day.
I've had GvHD pretty badly in my mouth and am using a lignocaine spray before I eat as it numbs all the ulcers on my tongue and cheeks - nearly makes your feet leave the ground when you first spray it on, but kicks in after about 30 secs and makes the bottom half of your face feel like Droopy the cartoon beagle.
Overall though (and I don't want to jinx things) I'm in a far more positive frame of mind and I hope to be back at the gym within a few weeks. My next appointment is back at Kings on 1st October and if I can continue to keep the weight going on I can avoid being readmitted and at this stage in the deal I really don't want to be back in hospital again.
On a lighter note (!) Milo, age 3, has developed a rather unique speech tic over the past few weeks - a long drawn out sigh followed by 'Fucking Hell'. Both Jeannette and I were mortified the first time we heard it and it obviously registered with him that it got a great reaction, so he drops it into his conversation every so often. The penalty is a slapped leg and instant exile to his bedroom and he disappears in floods of tears, insisting that he's sorry but he keeps doing it. A new variation is 'Tucking Hell' in the hope that this will pass muster, I'm starting to get worried now because if he keeps developing at this rate he'll be running rings around the both of before he's 5.
Monday, 23 September 2013
Thursday, 18 July 2013
T + 149 days. Sod this for a larf - I'm having a kidney transplant next time.
18/07/2013
Bloods - all good
Weight 9st 6lb (130lbs)
Well here we are at 5 months in and I have to admit that this isn't quite where I envisaged being when I pictured my rosy future back on February 19th.
On the plus side I'm showing levels of between 99 to 100% chimerism, the BMT appears to have been a success, my blood counts have been consistently good and on the up since I left hospital and my skin GvHD has completely gone.
The flipside of this is that I've done a couple of rounds with Cyto Megalo Virus and since having a bum-cam (colonoscopy) yesterday, now know that I have a couple of colonic ulcers - only small ones mind - and am being checked for a recurrence of gastro-intestinal GvHD. This goes a long may towards explaining why I have had painful stomach cramps and the raging trots for the past six weeks! Oh and the last of my fingernails fell out last week.
I don't think I'm depressed, I think it's more of a siege mentality where I've just battened down the hatches to try and ride out shitty times (har de har) that I'm going through. I'm very much keeping in mind the fact that although I may never feel good at any given point during the day, all of this is short to medium term and it will pass meaning that I come through the other end of it with healthy, functioning bone marrow and the rest of my life to look forward to.
Bloods - all good
Weight 9st 6lb (130lbs)
Well here we are at 5 months in and I have to admit that this isn't quite where I envisaged being when I pictured my rosy future back on February 19th.
On the plus side I'm showing levels of between 99 to 100% chimerism, the BMT appears to have been a success, my blood counts have been consistently good and on the up since I left hospital and my skin GvHD has completely gone.
The flipside of this is that I've done a couple of rounds with Cyto Megalo Virus and since having a bum-cam (colonoscopy) yesterday, now know that I have a couple of colonic ulcers - only small ones mind - and am being checked for a recurrence of gastro-intestinal GvHD. This goes a long may towards explaining why I have had painful stomach cramps and the raging trots for the past six weeks! Oh and the last of my fingernails fell out last week.
I don't think I'm depressed, I think it's more of a siege mentality where I've just battened down the hatches to try and ride out shitty times (har de har) that I'm going through. I'm very much keeping in mind the fact that although I may never feel good at any given point during the day, all of this is short to medium term and it will pass meaning that I come through the other end of it with healthy, functioning bone marrow and the rest of my life to look forward to.
Wednesday, 29 May 2013
T + 100. Look what the cat dragged in.
29/05/2013
Hb 10.8
Ntl 1.35
Weight 10st 2lbs. (64.4 kilos)
Well hello bloghos I thought it was time to update.
It is now day 100 since the transplant and so far (barring a couple of minor blips) the status of my graft is looking very good. One thing of which I was unaware is 'chimerism' and for those of you to whom this is also news, I offer the following layman's explanation.
Post transplant, the recipient (ie me) has regular tests conducted on bone marrow samples taken from the coccyx at the back of the pelvis, which basically involves having a dirty great big needle stuck into the core of the bone (under local anaesthetic) and samples taken from the marrow inside. This is done at approximately day 25, 50, 100 then at six months and 12 months. One of the tests is to determine how effective the chemo has been at killing off the patient's existing bone marrow and how fully the donor stem cells have transplanted.
The readings for my first two tests have so far been 100% - meaning that the chemo has fully destroyed my diseased bone marrow and that so far my marrow appears to be composed of the healthy donor stuff. If it stays this way, it would mean that I could be cured of MDS rather than just being in remission, which is way better than I ever expected, but time will tell eh?
I ended up being in Kings' College for just over 7 weeks in total. In the end it was decided that keeping me in because of the temperature spikes was doing nobody any good - least of all me so I was discharged on March 26th. The intervening weeks are all a bit blurred into one now and although being home was a boost it was in general not a jolly time. My weight continued to drop and I bottomed out at about 9st 12lb (62.5 kilos) and found that I had no energy, no appetite, sleeping for 16 or 17 hours a day and so apathetic that I couldn't be arsed to do anything - no contact with friends or family. I even caught myself walking with a stoop, hunched over like an old geezer and had to train myself into standing upright! One other unwelcome side effect is that my finger nails are going to fall out - the new ones are growing under the old dead ones, slowly pushing them up my finger and detaching them from the nail quick - yuk.
Thankfully in the past 2-3 weeks things have started to pick up - I've got my appetite back and I'm up and about, driving again and pushing to do more. My medication has been reduced over the successive weeks such that it's now down to about half a handful a day and I'm certain that this is contributing to the improvement. It is still a new experience e- being on the other side of the transplant and having such a big horizon - previously life had stretched as far as getting the transplant and no further.
Hb 10.8
Ntl 1.35
Weight 10st 2lbs. (64.4 kilos)
Well hello bloghos I thought it was time to update.
It is now day 100 since the transplant and so far (barring a couple of minor blips) the status of my graft is looking very good. One thing of which I was unaware is 'chimerism' and for those of you to whom this is also news, I offer the following layman's explanation.
Post transplant, the recipient (ie me) has regular tests conducted on bone marrow samples taken from the coccyx at the back of the pelvis, which basically involves having a dirty great big needle stuck into the core of the bone (under local anaesthetic) and samples taken from the marrow inside. This is done at approximately day 25, 50, 100 then at six months and 12 months. One of the tests is to determine how effective the chemo has been at killing off the patient's existing bone marrow and how fully the donor stem cells have transplanted.
The readings for my first two tests have so far been 100% - meaning that the chemo has fully destroyed my diseased bone marrow and that so far my marrow appears to be composed of the healthy donor stuff. If it stays this way, it would mean that I could be cured of MDS rather than just being in remission, which is way better than I ever expected, but time will tell eh?
I ended up being in Kings' College for just over 7 weeks in total. In the end it was decided that keeping me in because of the temperature spikes was doing nobody any good - least of all me so I was discharged on March 26th. The intervening weeks are all a bit blurred into one now and although being home was a boost it was in general not a jolly time. My weight continued to drop and I bottomed out at about 9st 12lb (62.5 kilos) and found that I had no energy, no appetite, sleeping for 16 or 17 hours a day and so apathetic that I couldn't be arsed to do anything - no contact with friends or family. I even caught myself walking with a stoop, hunched over like an old geezer and had to train myself into standing upright! One other unwelcome side effect is that my finger nails are going to fall out - the new ones are growing under the old dead ones, slowly pushing them up my finger and detaching them from the nail quick - yuk.
Thankfully in the past 2-3 weeks things have started to pick up - I've got my appetite back and I'm up and about, driving again and pushing to do more. My medication has been reduced over the successive weeks such that it's now down to about half a handful a day and I'm certain that this is contributing to the improvement. It is still a new experience e- being on the other side of the transplant and having such a big horizon - previously life had stretched as far as getting the transplant and no further.
Wednesday, 20 March 2013
T + 26. Knackered
18/03/2013
Hb: 10.2 (+0.1)
Wbc: 3.56 (-3.55)
Plt: 68 (+4)
Ntl: 2.68 (-3.47)
Weight: 72.8kg
19/03/2013
Hb: 11.0 (+0.8)
Wbc: 2.69 (-0.87)
Plt: 100 (+32)
Ntl: 1.99 (-0.69)
Weight: 70.6kg
Things are looking good as far as my blood levels go - the haemoglobin and platelets are all my own work, but the Wbc and Ntls are probably assisted as I had another GCSF jab a couple of days ago.
Jeannette conveyed some interesting information yesterday (well interesting to me anyway) she was chatting with one of her contacts in haematology and he had this to say. What has effectively happened to your husband is that he has been pretty much killed and brought back to life, so his system has been in shock and is using all and any resources to try to heal and get back to normal.
Given that under normal circumstances a male needs to consume between 2000 to 2500 calories per day to fuel the body, a post chemo/transplant male needs something in the region of 3000 calories per day just to maintain the status quo. I find this very helpful in explaining my weight loss (I've dropped about 10kg since coming into King's) as it gives me a very clear path forward - chow down and pig out. I'm not naturally a grazer, I tend to only eat at set meal times, or at most have a protein shake with a raw egg in it before and after gym sessions so it's new territory.
Jeannette has brought me in some unflavoured Build Up powder that is sprinkled on normal meals to up the calorie count and I've been down to the hospital shop and stocked up on chocolate. As an additional incentive I'm going off menu tonight and ordering a delivery from a Pizza Hut down the road, I figure after nearly six weeks of eating from the same hospital menu (good though it is) I'm entitled to a bit of variety.
Update - sodding bastard Pizza Hut won't deliver to the ward - they'll meet me outside the hospital gates, which is less than helpful seeing as I'm in an isolation ward. I bet this wouldn't happen in the U.S. they don't let anything come between a man and his lard. I can only assume that it's because the area is a bit dicey and there's a likelihood of the guy losing his bike or getting robbed - still I was quite gutted as I was really looking forward to it. Luckily I had BLT and some Muller Rice to keep the calorie count up - around 500 for the two.
I'm off the MRSA prog now, so no more HiBi scrub soap or Bactroban gel to stick up my snout, I'll be swabbed and retested on Thursday and fingers crossed that'll remove another barrier to me getting out. As a further precaution, I've also just done a sugar absorption test on my gut which I believe is to look for GVHD of the gut as it's possible with the weight loss. I tend to think that it's down to not forcing enough food down me - but hey who are the experts round here anyway? Very very tired all the time down - probably sleeping for 15 hours a day.
Hb: 10.2 (+0.1)
Wbc: 3.56 (-3.55)
Plt: 68 (+4)
Ntl: 2.68 (-3.47)
Weight: 72.8kg
19/03/2013
Hb: 11.0 (+0.8)
Wbc: 2.69 (-0.87)
Plt: 100 (+32)
Ntl: 1.99 (-0.69)
Weight: 70.6kg
Things are looking good as far as my blood levels go - the haemoglobin and platelets are all my own work, but the Wbc and Ntls are probably assisted as I had another GCSF jab a couple of days ago.
Jeannette conveyed some interesting information yesterday (well interesting to me anyway) she was chatting with one of her contacts in haematology and he had this to say. What has effectively happened to your husband is that he has been pretty much killed and brought back to life, so his system has been in shock and is using all and any resources to try to heal and get back to normal.
Given that under normal circumstances a male needs to consume between 2000 to 2500 calories per day to fuel the body, a post chemo/transplant male needs something in the region of 3000 calories per day just to maintain the status quo. I find this very helpful in explaining my weight loss (I've dropped about 10kg since coming into King's) as it gives me a very clear path forward - chow down and pig out. I'm not naturally a grazer, I tend to only eat at set meal times, or at most have a protein shake with a raw egg in it before and after gym sessions so it's new territory.
Jeannette has brought me in some unflavoured Build Up powder that is sprinkled on normal meals to up the calorie count and I've been down to the hospital shop and stocked up on chocolate. As an additional incentive I'm going off menu tonight and ordering a delivery from a Pizza Hut down the road, I figure after nearly six weeks of eating from the same hospital menu (good though it is) I'm entitled to a bit of variety.
Update - sodding bastard Pizza Hut won't deliver to the ward - they'll meet me outside the hospital gates, which is less than helpful seeing as I'm in an isolation ward. I bet this wouldn't happen in the U.S. they don't let anything come between a man and his lard. I can only assume that it's because the area is a bit dicey and there's a likelihood of the guy losing his bike or getting robbed - still I was quite gutted as I was really looking forward to it. Luckily I had BLT and some Muller Rice to keep the calorie count up - around 500 for the two.
I'm off the MRSA prog now, so no more HiBi scrub soap or Bactroban gel to stick up my snout, I'll be swabbed and retested on Thursday and fingers crossed that'll remove another barrier to me getting out. As a further precaution, I've also just done a sugar absorption test on my gut which I believe is to look for GVHD of the gut as it's possible with the weight loss. I tend to think that it's down to not forcing enough food down me - but hey who are the experts round here anyway? Very very tired all the time down - probably sleeping for 15 hours a day.
Saturday, 16 March 2013
T + 23. I can no longer Stand and Wonder, because I'm Driven by this Hunger
16/03/2013
Hb: 10 (+1.6)
Wbc: 12.3 (+ 11.24)
Plt: 48 (+5)
Ntl: 10.93 (+10.31)
Weight: 74.8kg
17/03/2013
Hb: 10.1 (+0.1)
Wbc: 7.11 (-5.19)
Plt: 64 (+16)
Ntl: 6.15 (-4.79)
Weight: 74.6kg
Feeling pretty damn good these days, although with the strength and energy of a runt of the litter kitten. I still have a little GvHD rash on my hands and feet and the usual lavatorial hi-jinks but what you gonna do eh? Bloods looking good, I had a jab of GCSF yesterday to give the whites a kick start the other day, but the Hb is all me.
I was chatting to Jeannette earlier on today about my weight loss, which has been a bit faster than expected, given that I'm now back up to 3 meals a day and topping up with high calorie milkshakes with an ice cream float as a between meals snack - I had 3 of the buggers yesterday and have still managed to drop a couple of kilos - of course a lot of it must be getting rid of the last of the water retention I had going on - glad to see that phase passing!
Being the vain and shallow type that I am, I was having a bitch about watching the lean muscle I've so carefully built up over the years just melt away in a matter of weeks. My calves have gone, I have chicken thighs and shoulders and biceps that appear to shrink on a daily basis. A less shallow and vain person would take the view that doing what I'm doing now has given me the chance for another 20-25 years of quality existence and be happy with that and the opportunity for (yet another) fresh start - and I am, majorly - and I think I always knew that the hard work I was doing in the gym was more to put me in the best place on the starting grid to come through this stuff quickly and better shape.
It's just that for a laid back ex-druggie ex-booze hound, I finally found my competitive streak in the gym. The rules were simple, if you get on a weight machine and the person before you has been lifting more than your usual training amount, then you're not allowed to reduce the weight (unless the guy before you is some bug eyed, roid-headed testosterone fountain). Always increase your lift by 5kg per fortnight and if someone gets off a machine having been lifting the same as your current setting, then bump it by 5kg before you start - always train to the point of failure and switch up the routine every six weeks to prevent plateau.
Now the clear-headed amongst you will pretty quickly separate the prideful, vain stupid macho bullshit from the common sense in the last paragraph, but I bet there's some of you that do it just the same. My main grouch was starting over - going right back to the point where I'd just joined a gym and started from nothing. This sounds like the point where I give you one of those 'Thought for the Day' switcheroos - 'and in many ways believing in God is like joining a gym..etc' but nah.
In truth, not only does this give me the opportunity to start again at both weights and cardio on an equal footing (and I fucking hated cardio - no haemoglobin), it's going to mean I can be a properly active father to Milo, rather than the grouchy short fused twat I fear I'd turned into and something that was mostly denied to my two older sons Callum and Will - as I was still too busy looking at the world through the bottom of a bottle (well it was a tin - but you take my point). I will hopefully again become the man that my wife Jeannette remembers prior to my diagnosis in Summer 2008 - and who has diminished a fragment at a time over the intervening years.
That is way too deep for me, time to get back to the silliness and bullshit.
Something I don't think I have touched on so far are the bizarre dreams that I get from the meds - for example last night I composed an 8 part acapella song between dozing off and sleeping - kind of a cross between the Beach Boys and some sort of progressive rock - only about 2 minutes long but I can remember thinking this is fucking ossum - I have to remember this for tomorrow, I can download a little freebie 8 track studio to the laptop and get going on it and my mate Stu can whack some drums over the top of it - can I recall a shred of it? Can I fuck. Another dream a couple of nights back involved me approaching the Small Faces (yeah in the sixties - but I was my age now) with an idea for a promo video for either 'Itchycoo Park' or 'Song of a Baker', which lovingly ripped off almost every aspect of Bo. Rap by Queen, especially the four heads under the spots and the full band rock out at the end after the Beelzebub bit. They loved it - I mean if you can remember the impact it had in 1975 imagine how it would have gone down in 1968 - that was a bloody brilliant dream, with me modestly claiming that these genius ideas just came to me - I was fully expecting The Beatles on the blower next asking for some help with Lady Madonna.
NB Page views for this site passed 4000 (four freaking thousand!) overnight so I though I'd show you the top ten countries - which is all I get to see - and all I can say is thanks for sticking with it you nosey fuckers!
Hb: 10 (+1.6)
Wbc: 12.3 (+ 11.24)
Plt: 48 (+5)
Ntl: 10.93 (+10.31)
Weight: 74.8kg
17/03/2013
Hb: 10.1 (+0.1)
Wbc: 7.11 (-5.19)
Plt: 64 (+16)
Ntl: 6.15 (-4.79)
Weight: 74.6kg
Feeling pretty damn good these days, although with the strength and energy of a runt of the litter kitten. I still have a little GvHD rash on my hands and feet and the usual lavatorial hi-jinks but what you gonna do eh? Bloods looking good, I had a jab of GCSF yesterday to give the whites a kick start the other day, but the Hb is all me.
I was chatting to Jeannette earlier on today about my weight loss, which has been a bit faster than expected, given that I'm now back up to 3 meals a day and topping up with high calorie milkshakes with an ice cream float as a between meals snack - I had 3 of the buggers yesterday and have still managed to drop a couple of kilos - of course a lot of it must be getting rid of the last of the water retention I had going on - glad to see that phase passing!
 |
| Hickman hooked up to meds - note water retention in arms |
Being the vain and shallow type that I am, I was having a bitch about watching the lean muscle I've so carefully built up over the years just melt away in a matter of weeks. My calves have gone, I have chicken thighs and shoulders and biceps that appear to shrink on a daily basis. A less shallow and vain person would take the view that doing what I'm doing now has given me the chance for another 20-25 years of quality existence and be happy with that and the opportunity for (yet another) fresh start - and I am, majorly - and I think I always knew that the hard work I was doing in the gym was more to put me in the best place on the starting grid to come through this stuff quickly and better shape.
It's just that for a laid back ex-druggie ex-booze hound, I finally found my competitive streak in the gym. The rules were simple, if you get on a weight machine and the person before you has been lifting more than your usual training amount, then you're not allowed to reduce the weight (unless the guy before you is some bug eyed, roid-headed testosterone fountain). Always increase your lift by 5kg per fortnight and if someone gets off a machine having been lifting the same as your current setting, then bump it by 5kg before you start - always train to the point of failure and switch up the routine every six weeks to prevent plateau.
Now the clear-headed amongst you will pretty quickly separate the prideful, vain stupid macho bullshit from the common sense in the last paragraph, but I bet there's some of you that do it just the same. My main grouch was starting over - going right back to the point where I'd just joined a gym and started from nothing. This sounds like the point where I give you one of those 'Thought for the Day' switcheroos - 'and in many ways believing in God is like joining a gym..etc' but nah.
In truth, not only does this give me the opportunity to start again at both weights and cardio on an equal footing (and I fucking hated cardio - no haemoglobin), it's going to mean I can be a properly active father to Milo, rather than the grouchy short fused twat I fear I'd turned into and something that was mostly denied to my two older sons Callum and Will - as I was still too busy looking at the world through the bottom of a bottle (well it was a tin - but you take my point). I will hopefully again become the man that my wife Jeannette remembers prior to my diagnosis in Summer 2008 - and who has diminished a fragment at a time over the intervening years.
That is way too deep for me, time to get back to the silliness and bullshit.
Something I don't think I have touched on so far are the bizarre dreams that I get from the meds - for example last night I composed an 8 part acapella song between dozing off and sleeping - kind of a cross between the Beach Boys and some sort of progressive rock - only about 2 minutes long but I can remember thinking this is fucking ossum - I have to remember this for tomorrow, I can download a little freebie 8 track studio to the laptop and get going on it and my mate Stu can whack some drums over the top of it - can I recall a shred of it? Can I fuck. Another dream a couple of nights back involved me approaching the Small Faces (yeah in the sixties - but I was my age now) with an idea for a promo video for either 'Itchycoo Park' or 'Song of a Baker', which lovingly ripped off almost every aspect of Bo. Rap by Queen, especially the four heads under the spots and the full band rock out at the end after the Beelzebub bit. They loved it - I mean if you can remember the impact it had in 1975 imagine how it would have gone down in 1968 - that was a bloody brilliant dream, with me modestly claiming that these genius ideas just came to me - I was fully expecting The Beatles on the blower next asking for some help with Lady Madonna.
NB Page views for this site passed 4000 (four freaking thousand!) overnight so I though I'd show you the top ten countries - which is all I get to see - and all I can say is thanks for sticking with it you nosey fuckers!
| Entry | Pageviews |
|---|---|
United Kingdom
|
3326
|
United States
|
195
|
Canada
|
127
|
Germany
|
88
|
Ireland
|
81
|
Ukraine
|
29
|
France
|
18
|
Spain
|
17
|
Australia
|
14
|
United Arab Emirates
|
10
|
Friday, 15 March 2013
T + 22. 'Ahma go' Bitch Slap upside yo' Fat Head
15/03/2013
Hb: 8.4 (-1.5)
Wbc: 1.06 (+0.63)
Plt: 43 (-6)
Ntl: 0.52 (0.62)
Weight: 77.9kg
The recent cold spell has made me very aware that as a baldy, baldy man I'm losing a lot of heat through my head and I've been keeping my room way too hot, so I asked Jeannette to bring me a hat in on next visit. She didn't hear it quite like that and we ended up having a mini fashion show results <sigh> are below.
No1 Mr Mofo Pimp Hat
To be honest I was quite taken with this, sartorial elegance and an air of menace. Unfortunately though no woolly lining - a kind of harsh nylon interior - not baldy baldy man friendly.
Hat No 2 Mr Metrosexual Pom Pom Hat.
Hb: 8.4 (-1.5)
Wbc: 1.06 (+0.63)
Plt: 43 (-6)
Ntl: 0.52 (0.62)
Weight: 77.9kg
The recent cold spell has made me very aware that as a baldy, baldy man I'm losing a lot of heat through my head and I've been keeping my room way too hot, so I asked Jeannette to bring me a hat in on next visit. She didn't hear it quite like that and we ended up having a mini fashion show results <sigh> are below.
No1 Mr Mofo Pimp Hat
To be honest I was quite taken with this, sartorial elegance and an air of menace. Unfortunately though no woolly lining - a kind of harsh nylon interior - not baldy baldy man friendly.
Hat No 2 Mr Metrosexual Pom Pom Hat.
Although it had a nice comfortable woolly lining - this was never a contender, I'm no way near that metrosexual.
Hat No. 3 The Biggles Look.
In my eyes and given my obvious soft spot for all things Battle of Britain here we have a winner-and it looks cool with my face mask - though if the Huggy Bear pimp hat had had a soft lining - well who knows.
The decision on my release seems imminent, although I've just been put on 5 day MRSA watch (special soap and nasal oinkment) there is still a possibility that I could be out next week - fingers crossed people. A line of thought that the says my body is kicking up against the Hickman Line and could maybe be causing the temperature spikes and so I may be having it taken out.
Thursday, 14 March 2013
T + 21. I do not Stink like a Piss Soaked Pole Cat
12/03/2013
Hb: 9.9 (-0.4)
Wbc: 1.69 (+0.68)
Plt: 49 (-15)
Ntl: 1.14 (+0.22)
Weight: 77.9kg
Well I got the news today that the guys here are giving serious consideration to releasing me back into the wild sometime around next Monday. It's quite late in the day now so I'm a bit knacked, but last night gave me the best sleep so far - a good solid 7-7.5 hours, sorry to bore the arse off you, but I'm writing this for me after all and I want to remember just how important the little things were in here, like getting sufficient sleep, the lovely feeling of cleanliness after a shower and the timely delivery of painkillers.
I have developed a new approach to showering. Prior to being admitted to KCH I was never much one for them - not to say that I reeked like a piss soaked pole cat, it's more that vegging in the bath with a magazine, preferably a Mojo or Shindig! for a good old soak was more my idea of 40 minutes of life well conducted.
No baths in here, so I've shifted one of the folding plastic chairs in there and angled the shower head to 90 degrees and will happily spend 30-40 minutes in there, head down just moving my it around letting the water cascade all over me - you can get into a kind of trance and let yourself go, I have to force myself to get out sometimes because I really could spend an hour in there - no problem.
For the queue people, this is lovely and intensely relaxing and I cannot recommend it enough - even on my worst days this has helped bring me relief and peace for up to and hour and a half after getting out. You may well be prescribed a shitload of creams to apply to GvHD rash (or MMPRv for those of you in the know). I've got a steroid one to apply thinly all over, a separate one for my face, a moisturizer to go over the top of the lot and one for my poor old scrote (bad news there by the way, the swelling's gone down - I was prouder than a gardener with a prize winning marrow for a while there). Back to my point, when you're all super slinky and chilled after a nice long spritz it's an ideal opportunity to get all of the lubing business out of the way which otherwise really, is quite greasy and a bit of a pain in the bum.
As you might imagine, this business involves a fair bit of sitting around waiting, I get wheeled all over the place to be given different scans and X-rays - so I've learnt to make my own entertainment.
I was sent down for a CT scan (me neither) today and cast my eye around the waiting area and saw a 'Mission Statement' proudly emblazoned across the top of a notice board.
Now I remember these becoming fashionable about 10-12 years ago under the last Government and local authorities wasted countless hours in meetings coming up with something that abided by the Management Bullshit guidelines to create a snappy strap line that encapsulated 'in a meaningful way' what your area of the 'business' delivered to 'the stakeholder' in a manner that was 'diverse' , 'accessible' and 'inclusive'. I'm sorry I need a minute here, the memory of all this has triggered my gag reflex.
That's better, now because these things ended up being written effectively by a committee they were very often a bit of a dogs dinner by the time they were done and, in most instances were very definitely not strap lines. So the dust bin men might find their bin lorries might end up emblazoned with;
Hb: 9.9 (-0.4)
Wbc: 1.69 (+0.68)
Plt: 49 (-15)
Ntl: 1.14 (+0.22)
Weight: 77.9kg
Well I got the news today that the guys here are giving serious consideration to releasing me back into the wild sometime around next Monday. It's quite late in the day now so I'm a bit knacked, but last night gave me the best sleep so far - a good solid 7-7.5 hours, sorry to bore the arse off you, but I'm writing this for me after all and I want to remember just how important the little things were in here, like getting sufficient sleep, the lovely feeling of cleanliness after a shower and the timely delivery of painkillers.
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| Bit of an improvement on the last pic eh? |
No baths in here, so I've shifted one of the folding plastic chairs in there and angled the shower head to 90 degrees and will happily spend 30-40 minutes in there, head down just moving my it around letting the water cascade all over me - you can get into a kind of trance and let yourself go, I have to force myself to get out sometimes because I really could spend an hour in there - no problem.
For the queue people, this is lovely and intensely relaxing and I cannot recommend it enough - even on my worst days this has helped bring me relief and peace for up to and hour and a half after getting out. You may well be prescribed a shitload of creams to apply to GvHD rash (or MMPRv for those of you in the know). I've got a steroid one to apply thinly all over, a separate one for my face, a moisturizer to go over the top of the lot and one for my poor old scrote (bad news there by the way, the swelling's gone down - I was prouder than a gardener with a prize winning marrow for a while there). Back to my point, when you're all super slinky and chilled after a nice long spritz it's an ideal opportunity to get all of the lubing business out of the way which otherwise really, is quite greasy and a bit of a pain in the bum.
As you might imagine, this business involves a fair bit of sitting around waiting, I get wheeled all over the place to be given different scans and X-rays - so I've learnt to make my own entertainment.
I was sent down for a CT scan (me neither) today and cast my eye around the waiting area and saw a 'Mission Statement' proudly emblazoned across the top of a notice board.
Now I remember these becoming fashionable about 10-12 years ago under the last Government and local authorities wasted countless hours in meetings coming up with something that abided by the Management Bullshit guidelines to create a snappy strap line that encapsulated 'in a meaningful way' what your area of the 'business' delivered to 'the stakeholder' in a manner that was 'diverse' , 'accessible' and 'inclusive'. I'm sorry I need a minute here, the memory of all this has triggered my gag reflex.
That's better, now because these things ended up being written effectively by a committee they were very often a bit of a dogs dinner by the time they were done and, in most instances were very definitely not strap lines. So the dust bin men might find their bin lorries might end up emblazoned with;
'London Borough of Phones, Loans and Chicken Bones Refuse and Recycling Department'
Our Mission is;
The Timely, Sutainable Removal, Disposal and/or Recycling for
The Diverse and Differently - Abled Stakeholders of Household Waste
and Recyclables within the Borough'
and Recyclables within the Borough'
Which is all very laudable sorry I mean sickening, but hardly trips off the tongue eh?
The one I spotted today was the antithesis of everything I've written above, but in its way just as bad - here we go.
'WORKING TOWARDS EXCELLENCE'
What does 'Working towards...' even mean? 'Well we're at average so let's work towards hum-drum' Take a minute and read it again. Now I'm no lover of this brand of bullshit, but even I can see it's half-arsed. It might just as well read 'Hitchiking to Rochdale' or 'Pissing on Nettles'. If you do have to turn out this shite at least make it any good. One should Strive for excellence, quest for it, fight for it with your last breath - make one last fated grasp for it as your life blood spills from the bullet wound in your upper left arm anything but work towards it.
Some bright eyed MBA straight out of Uni was probably given this as his (or her) first assignment, when skip in step, fringe a flopping and whistling a little tune of first-job happiness he (or she) came up against the committee. They never stood a chance...
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