Bloods OK, new meds have dropped things a bit.
Chimerism still 100%.
Still taking shed loads of pills, ciclosporin, acyclovir, penicillin, myfenax, budesonide, folic acid, omeprazole, zopliclone etc
I had about three weeks when I was free from mouth ulcers and thought I'd seen the last of them. It was during this period that I was contacted by Guy's Hospital dermatology dept with a view to being assessed for light therapy and, thinking that I was out of the woods I foolishly turned them down.
Then BAM less than a week later the ulcers were (are) back with a vengeance and worse than before. Fortunately Guy's were able to schedule me in at short notice, so on Tuesday of this week I hopped on a train up to London for my assessment.
I must say that they've got it all strapped down nice and tight in that unit - within 90 minutes I'd had blood tests, a consultation with Dr Childs, had my mouth photographed (so as to gauge progress) and been given a guided tour of the facility and procedure by the section head Nurse Sukran.
What's going to happen twice a fortnight over the next six months is that I will be hooked up to a machine which will take 1.5 litres of blood from one arm and run it through a centrifuge to separate out the white blood cells. The white blood cells will then be fed into a matrix where a set percentage of them will be exposed to ultra-violet light to kill them. The treated cells will then be recombined with the original blood and fed back into me through my other arm. I'm advised that there is between a 60-90% chance that this treatment will help resolve my GVHD and most especially the business with the ulcers - which are seriously starting to get on my tits.
There are some possible side effects but in comparison to the hassle that GVHD has given me I reckon that they are well worth chancing. I will have to avoid sunlight and wear sunglasses and sun block in daylight - but to be honest I can't wait to get started. It's been 10 months since my transplant and I still don't feel as if I'm anywhere near recovery. Whilst I appreciate that I will never be the person I was before the transplant I'm also pretty damn sure that I don't want the way I am now to be my new normal.
I will update as things progress.
Thursday 12 December 2013
Monday 23 September 2013
T + 212 days. The joys of Lignocaine and a potty mouth toddler.
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.
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.
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.
 |
| 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...
Monday 11 March 2013
T + 20. Jurassic Pork. The Lost Week.
09/03/2013
Hb: 10.0 (+1.8)
Wbc: 3.14 (+1.41)
Ntl: 2.62 (+1.19)
Plt: 87 (+69)
Weight: 79.8 kg
10/03/2013
Hb: 10.3 (+0.3)
Wbc: 1.31 (-1.83)
Ntl: 0.92 (-2.7)
Plt: 64 (-23)
Weight 80.2 kg
Apologies for being out of touch for a bunch of days, but to paraphrase Billy Ocean 'When the going gets tough, the blog can piss off' this is not reality poop hot from the from the frontline and I am not in the business of suffering for my <ahem > art.
WANKER I hear you shout - or is that just Jeannette?
Before I go any further - look at my lovely, lovely figures, 10/03 is without any recent top ups of blood or platelets or injections of GCSF - so I think I'm pretty much doing this myself - I couldn't be more chuffed. I know that some a re down a bit here and there, but the overall trend is good. If I can stay infection free and keep my temperature down, there's a real possibility that I could be out a lot sooner than expected.
Anyway I've had to write myself a bunch of headings so that I remember to include everything because so much has gone on. The first thing I want to say is that I'm stopping with the self-deprecating James Stewart type 'if that's the worst that this is going to get - then I think I'm going to be fine' spiel. I mean I still think I'm going to be fine, but every time I say OK folks THIS is the bottom, THIS is as far down as things are going to go, it appears to be the cue for the great Cosmic Bod to fuck with me some more - a bit like when the Gods stir the water in the font and mess with Harry Hamelin in that 80s Greek Gods fillum. So things have been shit, have got shitter and they may get shitterer still (or not).
There's a T-shirt logo for you.
Somewhere along the line I messed up my internal clock and my sleep pattern got very screwed over. I switched from a couple of dozes during the day and between 3-5.5 hours a night to 30-40 minutes every 2 hours throughout a 24 hour cycle. I wasn't too concerned for the first two days, but by day five I was a mess. The lack of sleep, combined with fluid retention and a bit of GVHD (Graft Versus Host Disease) rash had conspired to make me look like Darth Vader's guvnor with the hood pulled down <see pic> in fact I think if I didn't have such a trippy, happy colourful dressing gown I probably could have pulled it off. Be thankful it's a low-res pic...
 |
| Luke, Luke, - I know what you've got for Christmas... |
Roughly in middle of this period, about last Wednesday or Thursday it was decided to give me a go at an antibiotic called Ambisone - the first night I was given a taster dose, quite low and took to it ok. The next night, before being given it again, I'd had really bad headaches, still had some mucusitis and severe rigors so had been dosed up to the gills with Paracetomol, Codeine, Oramorph and Pethedine (the latter to stop the rigors). When the Ambisone was infused I felt some faint twitches and tingles but really had too much of a good thing going on behind my eyelids to be bothered.
Come the next night I pretty much went into it clean - ie no painkillers on board. This stuff is a sickly, pustular looking yellow and is apparently very effective at wiping out hard to track down infections - so basically it was aimed at the cause of my rigors and temperature spikes - which were hitting 40 degrees. It was a busy night on the ward with only 2 of the 3 usual staff on board (which I didn't know at the time) so the infusion started as usual with the machine chugging away and me laying back and wondering how long it was before my next painkillers were due for the ever present headache and with my nurse dashing off to another patient. After about 5 minutes I started to feel the familiar screaming kidneys band across my lower back and didn't think too much of it but within a further 3 minutes I knew some thing was up, the belt of pain kept tightening and flexing, my stomach started to churn violently and pains were starting to snake their way through my buttocks and down my legs.
Now, as the nurses here are no doubt damn sick of hearing, I am not a pussy when it comes to pain - I've been stabbed twice, been through a couple of windscreens, taken my share of beatings, had fingers/nose broken, had multiple bone marrow expirations, sliced the tips off most of the fingers on my left hand, fallen off ladders from silly heights and had teeth removed with insufficient local without a peep. My high pain threshold is a matter of pride with me - it comes from all the WWII and cowboy films I watched as a kid in the sixties and seventies.
Those guys could take a bullet - usually to the upper left arm (good guys) or the gut (for the baddies). Something that would normally have ricocheted around off the bone and rendered the entire upper arm into a bloody skin bag of its' own pulped components was treated as nothing worse than a bee sting. Cliff Robertson hauling his burnt and wounded body from the shattered cockpit of his Mosquito after his little ferret faced radio op has just passed on at the end of '633 Squadron' - I'm filling up remembering.
Christopher Plummer and Michael Caine in the Battle of Britain plummeting from the skies to strafe the crap out of Heinkels or Me109s with that Der Da Da Der Da Da Der Der Der Da Da Der Der Derrrrr music going on in the background. Men of a certain age know as well as I do that it's impossible to skip past this this film if you are channel surfing - no matter how much of it you've already missed. Mind you Christopher Plummer let the side down a bit when he let out that girly scream as his face got burnt off. Oh and Susannah York in that film lordy- but she was a bit nuts in real life I think.
This is part of my model of what comprises a man, so I though OK, I'll hit the call button and until the nurse comes, control it with breathing which is what I managed to do quite effectively for the next 25-30 minutes with this little mantra;
Breathe in deep and long for count of 5
Breathe out deep and long for count of 5
Breathe in deep and long for count of 5
Breathe out deep and long for count of 5 while saying 'FUCK YOU PAIN YOU FUCKER'
and start over...
Although I'd just made it up on the spot it worked pretty well and concentrating on keeping the rhythm and trying the make each 'FUCK YOU PAIN...' sound more menacing than the last took my mind off what was happening from the hips down. But I came to the point where I knew it wasn't going to work any longer, I'd over ventilated - my lips were numb and face was all clammy and lightly pins and needles. I had to break my pussy code and call for help - I tried a couple of loud groans at first - pretty much as soon as I stopped the breathing I was swamped with pain from the hips down, stabbing, burning disco lights of it dappling over me and my back arching upwards off the bed - crying freely now. I transgressed the Pussy code again and further this time by yelling 'Nurse' a couple of times. I realised that a nurse wouldn't come anytime soon - if she could have she would have by now. OK what next? - turn the machine off - I couldn't see to press the buttons - I reached down and fanned my hand around on the floor looking for the mains lead - found a bunch and bodily yanked the plugs out of the sockets across the room. Fell back on the bed - the pain didn't disappear instantly - but the relief was instantaneous.
Within 10 minutes my breathing had returned to normal as I could feel the concentration of Ambisone lessening with each circuit of my body made by my blood. 10 or 15 minutes after this the nurse was freed up enough to come and see me - I'd got myself together by then and explained what had happened and we mutually agreed that I wasn't going to be having any more Ambisone that night and to her credit as soon as I explained all this to Doc Anita the next day she got on the case and discontinued it immediately. Now it might just have been me in which it engendered such a severe reaction, but let me put a marker in the sand for you here queue people if you hear 'Ambisone' the next words that leave your mouth might need to be - sweet as you like 'What measures of pain control do you normally give with that?'
I woke up dead the next morning. Worst headache of my life so far (this is bearing in mind that I'm a recovering alcoholic of ten years standing and have expertise in this area) and karma had decided to diddle me just a little more by turning my mouth into a fleshy parrot beak, half man half herbivore dinosaur with quadruple peeling lips and vermillion eyes set deeply in a pouchy red ruined looking face. It was almost as though the intervening ten years of sobriety had never happened and I'd spent them on that same accelerating spiral of drink and drugs which I battled so hard to quit. If you don't get the 'Karma' reference pls do me a favour and go back and read 'T + 6 Karma's a bitch..' because I seem to be the only person that thinks it's funny - hardly any other bugger has read it.
In these situations the solution is age old and obvious and really the only way to go - you sleep and let your body take over - weaving you whole again strand by miniscule strand. I tried to sleep and just plain vegged for the next two days my eyes and face gradually looking more and more 'Picture of Dorian Gray' as it became plain to me that I couldn't sleep properly (just to give you some perspective the pic above is before the Ambisone episode). I caved and asked for some sleeping tablets to be prescribed that night (Saturday?) I'd had a bit of a tricksy experience with getting off sleeping pills called Zopiclone when I was first diagnosed back 2008 and was reluctant to go down that path again, but realised this would be for days rather than 12 months and what alternative did I have? - having just passed my sixth night without proper sleep I knew I was out of choices.
I'm writing now on Monday night after two nights of Zopiclone and I cannot begin to tell you how much better I feel. I got about five and a half hours the first night and maybe even as much as 7 hours over two spells last night. I even briefly had some white in my eyes before the infusions started today. I'm beginning to get some of my bounce back and feel that I can face the days head on now with an element of confidence that at least- at the very least I should be able to sleep at the end of it - and I'll cope with getting my clock sorted without pills when I leave hospital.
I just read this blog back to myself and was very tempted to delete the lot as self pitying whiny shite. There are pretty much guaranteed to be people within a 50 metre radius of where I am laying now who've had worse pain and worse sleep depravation and worse diseases and are Fugly as well. Then I decided well you go and write your own fucking blog - this is mine.
Well I'll just do a bit of housekeeping and give you the local news before I pack in.
In other news, a combination of water retention, possible infection and maybe just being sat on for a month has caused union member Mr Jolly-Bagge to swell by up about 30% in size, turn blazing red and become quite sore. Whilst the appearance is considered to be an overall improvement by the committee, we are currently in negotiations with the staff at Kings on 3 principal points;
- Curing or toning down the nuclear pink colouring
- Eradicating the itchiness and soreness
- Keeping the size.
Right that's mostly caught up - I'll try for some more tomorrow - one final bit of local news is that my NAC and Ciclosporin are being reduced to once a day and I've been told that I have to go and have do some special kind of drug respirator or inhalator to prevent lung disease. Now that sounds to me like pre-checks before going for a release back in to the wild - doesn't it to you?
Anyroad - more hot poop from our man on the spot when he can be arsed to report it to you from Kings College Hospital in the London Borough of Phones, Loans and Chicken Bones.
Sunday 3 March 2013
T + 12. A Momentary Lapse of Self Absorbtion
03/03/2013
Hb: 8.2 (-0.9)
Wbc: 1.73 (+1.42)
Ntl: 1.43 (+1.22)
Plt: 18 (-3)
Weight: 82.5kg
Not completely unexpected last night was another night on the tiles, but it started much earlier - I think it was about half past midnight that my temperature went up and I started gettin' down with ma bad self (shaking that is, not...you know). Throat very inflamed felt like I had a spike through it from mucositis so I spent the rest of the night in a bit of a haze getting topped up on Pethedine, Oramorph and Paracetomol every couple of hours (4 for the Paracetomol) and probably until about midday today just sleeping, vegging and waiting for my head to clear. Really hadn't realised how much it took out of me until I got up to get washed and had to navigate round to the bathroom holding onto the wall - luckily it's a small room.
I know it's probably tempting fate to be writing this again but at nearly 24 hours remove and with no recurrence I feel I'm still having an easy ride. When I hear an alarm go off in another room and the clatter of feet as the crash team rushes to help there's just no comparison. Any discomfort so far is sure to be temporary and given the news from yesterdays' and todays' bloods I couldn't honestly justify feeling anything other than upbeat
Jeannette came in to sit with me on Saturday afternoon which was most sweet and forbearing as in retrospect I very much doubt that I was fit for human consumption - I think she just couldn't wait to get a look at my new baldy man look. She says a tad Bruce Willis - I say Locke the on/off paralysed guy out of LOST.
24 hours is a long time in this kind of situation (actually one can be) when I went to clean my teeth this morning to get rid of the sickly sweet taste of umpteen doses of Oramorph I was all but unrecognisable. Eyes puffed half closed, big puffy jowls and a lower lip to put Jagger to shame, from water retention and all painted a lovely livid sweaty red but by 10pm you'd never have known it had even occurred.
I marvel at the human body now - the trillions of things that it gets right every hour of every day - the amount of stuff that gets put in me that it would normally do just trucking along on autopilot it's quite, quite miraculous
There is something wrong with me (apart from the MDS) in that for some bizarre reason I allow adverts to get up my nose. In the normal run of things I never see them because on Freesat you either view pre-recorded or just pause or fwd. TV when the ads come on. I don't have that option in here and he latest furniture chewer for me is the McDonald's ad with the whiny northern teen who won't accept the Mum's dopey looking bowl cut new fella, until the boyfriend offers to take him to McDonald's. Why oh why does he not take the opportunity to crush the little turd and just say 'I wasn't talking to you sh*thead' and just walk out - it would be such a beautiful thing.
Hb: 8.2 (-0.9)
Wbc: 1.73 (+1.42)
Ntl: 1.43 (+1.22)
Plt: 18 (-3)
Weight: 82.5kg
Not completely unexpected last night was another night on the tiles, but it started much earlier - I think it was about half past midnight that my temperature went up and I started gettin' down with ma bad self (shaking that is, not...you know). Throat very inflamed felt like I had a spike through it from mucositis so I spent the rest of the night in a bit of a haze getting topped up on Pethedine, Oramorph and Paracetomol every couple of hours (4 for the Paracetomol) and probably until about midday today just sleeping, vegging and waiting for my head to clear. Really hadn't realised how much it took out of me until I got up to get washed and had to navigate round to the bathroom holding onto the wall - luckily it's a small room.
I know it's probably tempting fate to be writing this again but at nearly 24 hours remove and with no recurrence I feel I'm still having an easy ride. When I hear an alarm go off in another room and the clatter of feet as the crash team rushes to help there's just no comparison. Any discomfort so far is sure to be temporary and given the news from yesterdays' and todays' bloods I couldn't honestly justify feeling anything other than upbeat
Jeannette came in to sit with me on Saturday afternoon which was most sweet and forbearing as in retrospect I very much doubt that I was fit for human consumption - I think she just couldn't wait to get a look at my new baldy man look. She says a tad Bruce Willis - I say Locke the on/off paralysed guy out of LOST.
 |
| Thas right you be checkin' my Swag - fool |
24 hours is a long time in this kind of situation (actually one can be) when I went to clean my teeth this morning to get rid of the sickly sweet taste of umpteen doses of Oramorph I was all but unrecognisable. Eyes puffed half closed, big puffy jowls and a lower lip to put Jagger to shame, from water retention and all painted a lovely livid sweaty red but by 10pm you'd never have known it had even occurred.
I marvel at the human body now - the trillions of things that it gets right every hour of every day - the amount of stuff that gets put in me that it would normally do just trucking along on autopilot it's quite, quite miraculous
There is something wrong with me (apart from the MDS) in that for some bizarre reason I allow adverts to get up my nose. In the normal run of things I never see them because on Freesat you either view pre-recorded or just pause or fwd. TV when the ads come on. I don't have that option in here and he latest furniture chewer for me is the McDonald's ad with the whiny northern teen who won't accept the Mum's dopey looking bowl cut new fella, until the boyfriend offers to take him to McDonald's. Why oh why does he not take the opportunity to crush the little turd and just say 'I wasn't talking to you sh*thead' and just walk out - it would be such a beautiful thing.
Friday 1 March 2013
T + 10. Hey there wanna see my Hairy Keyboard?
01/03/2013
02/03/2012
Hb: 9.1 (+1.2)
Wbc: 0.39 (+0.28)
Plt: 21 (+13)
Ntl: 0.21 (+0.14)
Weight: 82.5kg
Turns out my comment the other day about Carrie was a nearer the mark than I could have imagined, because at some time between 2am and 5.30am I started a real gusher of a nosebleed and woke up absolutely caked in my own blood and rattling all over the shop with rigors. I should have taken a pic really, bit I was so concerned about getting cleaned up that I forgot.
All credit to the Nurses Jinky and Mai who were completely unflappable in the face of what I thought at first was a scary quantity of blood (it wasn't) and got me sorted in double time. Looks like more platelets today and there's going to be a new antibiotic tonight to try and take down whatever it is that's giving me the rockabilly shakes.
Jeannette and my eldest Callum are dropping by this arvo bringing the clippers with them - and I seriously cannot wait to remove what remains of Tufted Duck Hair Island - I would laugh at me if I saw me in the street. also have to stop typing every couple of minutes or so to blow the arm hair off the keyboard <Gak>. Had the greatest shave of my life this morning, the razor actually removed the hair rather than cutting it and it feels great - soooooo smooth. Another effect I have noticed which I'm actually Ok with is a chemo burn suntan weirdly my face looks quite brown and healthy so for every blip so far there is a corresponding blap...you may also note that blood values have all gone up, the trick now is to see this sustained running on my own juice rather than top ups, have to admit though, I'm just a little bit excited.
Later in the day, nosebleed has stopped but shakes have come back, fortunately I shaved my head before they started up again. Have to sit and wait now for whatever the growth culture reveals, I know this may sound a bit whingey but if this is the worst it gets then I'm having an easy ride and look upon each day under my belt as a day nearer resuming my life. On the entertainment side I have been spoilt rotten, I've got about 15 or so recent top films and series 1 and 2 of the Walking Dead (ah jus' lurve me them Zawmbiz) and Boardwalk thingy from Sky.
Thursday 28 February 2013
T + 8. Fuck that for a Game of Soldiers (# 1)
27/02/2013
27/02/2013
Hb: 8.3 (-0.1)
Wbc: 0.20 (+0.04)
Ntl: 0.18 (+0.4)
Plt: 15 (+8)
Weight: 80.2 kg
28/02/2013
Hb: 7.9 (-0.4)
Wbc: 0.11 (-0.09)
Ntl: 0.07 (-0.11)
Plt: 8 (-7)
Weight: 81.3 kg
I decided to amalgamate 27/02 and 28/02 because not a lot happened yesterday, I was pretty thoroughly doped up to relieve the mucusitis and spent the day sleeping or staring at things.
Events got a little more interesting this morning at about 5.30am when I woke up with a bad case of the rigors/shakes which kept up for about two hours. Temperature went up to 39.8 degrees and things got a little bit fraught - Nurse Mai whacked some Pethedine and Antibiotics into my Hickman, which to my huge relief stopped the shakes within about 20 minutes. I have never felt so out of control of my own body - there was nothing I could do to stop the shakes and my teeth nearly rattled out of my head. It's now midday and the cocktail of Pethedine and Oramorph is just starting to clear from my head - can feel the fogginess lifting by the minute. The thinking on what went on is that the steroids I'm taking have masked an infection of some sort, so I've had multiple blood samples taken for blood cultures to check into what caused the little episode.
Nurse Fatimah just came in to see me and it sounds like I'm getting a complete top up today - a couple of units of blood, some platelets, magnesium and phosphates. As you can see from the figures above, apart from Hb all my other blood content is now pretty much shot away so hopefully its onwards and upwards from here on in (unless it's not hehehehehe).
I have got a dirty great big haematoma on my left arm from where they took some blood direct from the vein earlier today (rather than the Hickman)- it's a really strange matt dark purple colour like when an old person gets a black eye about the size of the 'O' you can make by rounding your forefinger onto your thumb- and down to low platelets.
Although my tongue is till sore, I think my mouth may be getting a bit better - I had lumps right cross the roof of my mouth yesterday which have now gone and the painkillers seem to be lasting longer, which may hint at less inflammation in the first place - the tongue does however still look like an albino toad's back - yum.
I applied to the blogging Adsense team to put advertisements on the blog in the hope of raising a little cash to donate back to MDS/AA causes but the buggers have knocked me back without leave to appeal. I was told to go away and read the terms and conditions governing content and can only assume that the references to pharmaceuticals and my love of Anglo-Saxon has pissed the snooty pricks off, although it's not recreational drug use and all instances of cussing are strictly necessary to convey atmosphere <ahem>.
There is another very easy way to donate if any blog readers would like to - via a text message to the Anthony Nolan Trust. These guys would have been my next port of call had my Sis not been found to be a suitable donor and their work is absolutely life saving. If you text the word Hope to 78866 then you will be making a one off no strings donation of £3 to the Anthony Nolan Trust - it's all kosher and is advertised on the telly - not some little 409 scam that I've cooked up!
27/02/2013
Hb: 8.3 (-0.1)
Wbc: 0.20 (+0.04)
Ntl: 0.18 (+0.4)
Plt: 15 (+8)
Weight: 80.2 kg
28/02/2013
Hb: 7.9 (-0.4)
Wbc: 0.11 (-0.09)
Ntl: 0.07 (-0.11)
Plt: 8 (-7)
Weight: 81.3 kg
I decided to amalgamate 27/02 and 28/02 because not a lot happened yesterday, I was pretty thoroughly doped up to relieve the mucusitis and spent the day sleeping or staring at things.
Events got a little more interesting this morning at about 5.30am when I woke up with a bad case of the rigors/shakes which kept up for about two hours. Temperature went up to 39.8 degrees and things got a little bit fraught - Nurse Mai whacked some Pethedine and Antibiotics into my Hickman, which to my huge relief stopped the shakes within about 20 minutes. I have never felt so out of control of my own body - there was nothing I could do to stop the shakes and my teeth nearly rattled out of my head. It's now midday and the cocktail of Pethedine and Oramorph is just starting to clear from my head - can feel the fogginess lifting by the minute. The thinking on what went on is that the steroids I'm taking have masked an infection of some sort, so I've had multiple blood samples taken for blood cultures to check into what caused the little episode.
Nurse Fatimah just came in to see me and it sounds like I'm getting a complete top up today - a couple of units of blood, some platelets, magnesium and phosphates. As you can see from the figures above, apart from Hb all my other blood content is now pretty much shot away so hopefully its onwards and upwards from here on in (unless it's not hehehehehe).
I have got a dirty great big haematoma on my left arm from where they took some blood direct from the vein earlier today (rather than the Hickman)- it's a really strange matt dark purple colour like when an old person gets a black eye about the size of the 'O' you can make by rounding your forefinger onto your thumb- and down to low platelets.
Although my tongue is till sore, I think my mouth may be getting a bit better - I had lumps right cross the roof of my mouth yesterday which have now gone and the painkillers seem to be lasting longer, which may hint at less inflammation in the first place - the tongue does however still look like an albino toad's back - yum.
I applied to the blogging Adsense team to put advertisements on the blog in the hope of raising a little cash to donate back to MDS/AA causes but the buggers have knocked me back without leave to appeal. I was told to go away and read the terms and conditions governing content and can only assume that the references to pharmaceuticals and my love of Anglo-Saxon has pissed the snooty pricks off, although it's not recreational drug use and all instances of cussing are strictly necessary to convey atmosphere <ahem>.
There is another very easy way to donate if any blog readers would like to - via a text message to the Anthony Nolan Trust. These guys would have been my next port of call had my Sis not been found to be a suitable donor and their work is absolutely life saving. If you text the word Hope to 78866 then you will be making a one off no strings donation of £3 to the Anthony Nolan Trust - it's all kosher and is advertised on the telly - not some little 409 scam that I've cooked up!
Wednesday 27 February 2013
T + 7. Cooking with Jamie Nutkins (read T + 6 first)
26/02/2013
Hb: 8.5 (-0.9)
Wbc: 0.16 (-0.18)
Ntl: 0.14 (-0.17)
Plt: 7.0 (-1.0)
Weight: 79.8 kg
I'd like to start today's entry by thanking so many of you for taking an interest in the Chemo/BMT/ Recovery charabanc. The number of page views since 11/02 now stands staggeringly at nearly 2200 and as previously mentioned this blog was first intended to save me having to txt friends, rellies and assorted spawn over and over with the same updates and maybe to leave some useful pointers to those awaiting treatment. Instead it's become another thing entirely - and very therapeutic for me. One favour I'd like to ask is for feedback, there's some of this stuff, that even as I'm typing it, I'm thinking is this offensive - have I overstepped? and the Jamie Oliver bit was a case in point, I decided to run that by my wife and sister before I hit publish. So please do leave comments - even if it's only to ask for my original Adidas Starsky and Hutch trainers if I snuff it.
So just give me a minute here to climb out of my own arse and we'll get back to business.
My blood levels sure done tanked yesterday, even the haemoglobin has finally taken a hit - stuff is at the kind of level now where going to my sons nursery to collect him tonight from amongst all the smiley faced little petri dishes there would be about as good for me as licking a toilet seat in the Black Hole of Calcutta. Very high risk of infection due to low WBC and neutrophils and also risk of a bleed due to low platelets - fortunately risk in here is minimised.
Sorry to have to bring you this news queue people, but my mouth, throat and trachea(?) are pretty fucking painful now due to mucusitis. I was trying to avoid asking for the OraMorph painkiller too frequently, but have been assured they won't think I'm a junkie if I do and to ask for as much as I need to feel comfortable - I was on 2.5ml which was good for about an hour at a time and it's being upped to 5ml. Last night was a real bugger and I don't want to put up with that again so it's away with the rufty tufty and I shall in future be clucking for my next fix along with the best of 'em.
Another rather weird aspect of mucusitis is the temporary destruction of the sense of taste as demonstrated to me by my choice of dress when I got up this morning;
Now my barnet was never my crowning joy - not for me a middle age/later life of distinguished grey flecked glory a la William Shatner (I know). I went from a mullet to a crop in about 1993 and have sported one ever since, with diminishing returns across the years as 'Widows Peak' became 'The Barnet Isthmus' - still just about connected to the mainland, to the current reduced circumstances of 'Hair Island' which is just about strung onto the rest of it by a manky old rope bridge. Snagglepuss Frankie calls it the tufted duck - which I rather like.
I know it's inevitable that chemo was going to make it fall out but I still had one hell of a shock when I spotted my scalp gleaming at me from the territory to the south of Hair Island, formerly thickly planted. If I leave things to progress normally it's going to go Terry Nutkins on me so it'll have to come off and Jeannette has agreed to bring the clippers in with her on the next visit. Mind you it's almost worth hanging on for that extra few days for the transformation to complete.
Imagine it - the eye searing majesty of a fully formed Jamie Nutkins I could take the show on the road, touring the provinces knocking up Pacific Fusion and Modern Cuisine in the back of a caravan,- concocted from voles and badgers and crested grebes and shit, - tongue lolling out happily- oh hang on I'm in an isolation ward. Anyway fairly soon I'll get some pics done of the spam when it happens - maybe with sidies left on for laughs.
One last Jamie Oliver story and I'm done - honest. I wonder how close to suicide he came the first time he tried to top up his phone by chatting to the robot lady at Orange. I just spent 8 or 10 sausage tongued minutes trying to get £20 on my moby in the end I had to pull my lower lip down with my thumb and forefinger to do something that sounded like English.
Hey ho - my Oromorph has just arrived it's time for Hendrix on the headphones again.
(edit 04/03/2013) Hello there - don't be one of the 66 people who has read this entry without reading Karma's a Bitch because a) a good 50% of what you've just read here will make no sense and b) it means one of the pieces I'm proudest of languishes unloved at the bottom of the viewings chart like an unloved step kid. So go ahead and scroll back you young rascal and we'll hear no more about it. <ruffling your hair in an inappropriate swimming teacher manner> Nick x
Hb: 8.5 (-0.9)
Wbc: 0.16 (-0.18)
Ntl: 0.14 (-0.17)
Plt: 7.0 (-1.0)
Weight: 79.8 kg
I'd like to start today's entry by thanking so many of you for taking an interest in the Chemo/BMT/ Recovery charabanc. The number of page views since 11/02 now stands staggeringly at nearly 2200 and as previously mentioned this blog was first intended to save me having to txt friends, rellies and assorted spawn over and over with the same updates and maybe to leave some useful pointers to those awaiting treatment. Instead it's become another thing entirely - and very therapeutic for me. One favour I'd like to ask is for feedback, there's some of this stuff, that even as I'm typing it, I'm thinking is this offensive - have I overstepped? and the Jamie Oliver bit was a case in point, I decided to run that by my wife and sister before I hit publish. So please do leave comments - even if it's only to ask for my original Adidas Starsky and Hutch trainers if I snuff it.
So just give me a minute here to climb out of my own arse and we'll get back to business.
My blood levels sure done tanked yesterday, even the haemoglobin has finally taken a hit - stuff is at the kind of level now where going to my sons nursery to collect him tonight from amongst all the smiley faced little petri dishes there would be about as good for me as licking a toilet seat in the Black Hole of Calcutta. Very high risk of infection due to low WBC and neutrophils and also risk of a bleed due to low platelets - fortunately risk in here is minimised.
Sorry to have to bring you this news queue people, but my mouth, throat and trachea(?) are pretty fucking painful now due to mucusitis. I was trying to avoid asking for the OraMorph painkiller too frequently, but have been assured they won't think I'm a junkie if I do and to ask for as much as I need to feel comfortable - I was on 2.5ml which was good for about an hour at a time and it's being upped to 5ml. Last night was a real bugger and I don't want to put up with that again so it's away with the rufty tufty and I shall in future be clucking for my next fix along with the best of 'em.
Another rather weird aspect of mucusitis is the temporary destruction of the sense of taste as demonstrated to me by my choice of dress when I got up this morning;
 |
| Mucusitis - the side effects. And no it's not actually me - fuckers. |
Now my barnet was never my crowning joy - not for me a middle age/later life of distinguished grey flecked glory a la William Shatner (I know). I went from a mullet to a crop in about 1993 and have sported one ever since, with diminishing returns across the years as 'Widows Peak' became 'The Barnet Isthmus' - still just about connected to the mainland, to the current reduced circumstances of 'Hair Island' which is just about strung onto the rest of it by a manky old rope bridge. Snagglepuss Frankie calls it the tufted duck - which I rather like.
I know it's inevitable that chemo was going to make it fall out but I still had one hell of a shock when I spotted my scalp gleaming at me from the territory to the south of Hair Island, formerly thickly planted. If I leave things to progress normally it's going to go Terry Nutkins on me so it'll have to come off and Jeannette has agreed to bring the clippers in with her on the next visit. Mind you it's almost worth hanging on for that extra few days for the transformation to complete.Imagine it - the eye searing majesty of a fully formed Jamie Nutkins I could take the show on the road, touring the provinces knocking up Pacific Fusion and Modern Cuisine in the back of a caravan,- concocted from voles and badgers and crested grebes and shit, - tongue lolling out happily- oh hang on I'm in an isolation ward. Anyway fairly soon I'll get some pics done of the spam when it happens - maybe with sidies left on for laughs.
One last Jamie Oliver story and I'm done - honest. I wonder how close to suicide he came the first time he tried to top up his phone by chatting to the robot lady at Orange. I just spent 8 or 10 sausage tongued minutes trying to get £20 on my moby in the end I had to pull my lower lip down with my thumb and forefinger to do something that sounded like English.
Hey ho - my Oromorph has just arrived it's time for Hendrix on the headphones again.
(edit 04/03/2013) Hello there - don't be one of the 66 people who has read this entry without reading Karma's a Bitch because a) a good 50% of what you've just read here will make no sense and b) it means one of the pieces I'm proudest of languishes unloved at the bottom of the viewings chart like an unloved step kid. So go ahead and scroll back you young rascal and we'll hear no more about it. <ruffling your hair in an inappropriate swimming teacher manner> Nick x
Tuesday 26 February 2013
T + 6. Karma's a bitch (and so is mucusitis)
25/02/2013
Hb: 9.4 (-0.3)
Wbc: 0.34 (-0.48)
Npl: 0.31 (-0.43)
Pl: 8 (-4)
Weight: 80.2kg
So no malice - just ripping the piss - I'm off to work on my wecipes for theamed withe now.
Hb: 9.4 (-0.3)
Wbc: 0.34 (-0.48)
Npl: 0.31 (-0.43)
Pl: 8 (-4)
Weight: 80.2kg
 |
| A leprachaun with some platelets (pictured yesterday) |
Well the numbers don't lie the drop off in blood content has been precipitous, I blew my nose this morning and started a nose bleed and if you've seen my nose you'll know that this could very quickly have become a life threatening scenario... anyway, it stopped after about 10 minutes or so and for once I forgot to mention anything about it. It wasn't until one of the nurses saw the bloody tissues in the waste that I was queried on it and in short order a bag of platelets arrived at my infuser and was gravity fed into me in pretty much straight away. Jeannette was present as I was loaded up and noted that it looked like I was being drip fed a bag of liquidised steak fat which sounds pretty damn good to me, so I've asked if she can sort that out for my birthday. Apparently bashes and bruises (especially bangs to the head) are very dangerous with low levels of platelets as the bleeds don't stop. So lesson learned.
Like many people, I have derived a lot of entertainment from Jamie Oliver over the years - not so much from his cooking or recipes, no, the source of my joy is the strangulated parpings that he rolls out of his mouth like popcorn kernels with his big fat macaw tongue - he truly is the love child of Keith Floyd and Freddie 'Parrot Face' Davis (google him).
The hint is in the title - karma is a bitch - sore mouth phase entered new territory overnight - Jamie Oliver territory. My tongue has been swapped out in the night for a half a chipolata - flopping around my mouth like a punch bag. All of a sudden it's 'dher' instead of 'the' 'woowar' instead of 'rural' and 'thobbing at Thainthburyth'. It's amazing how finely calibrated the change is, it's not as if my tongue has trebled or even doubled in fatness, probably about 3mm of swelling all round along with a bunch of ulcers in the roof of my mouth but still enough to turn my normal 'Poor Mick Jagger Impression' of a speaking voice into that of the Tilbury Dough Boy.
Now please don't get me wrong, I admire the chap for all his work with 'Fifteen' and school dinners and trying to make a stand against 'Big Food' it's just that the times during which my sense of humour and culture were formed (70's and 80's) deemed that personal quirks were to be seized upon and mercilessly lampooned. As stated, having a rather impressive endowment myself (nasally) and a widows peak hairline (more recently rechristened hair island) meant that I got quite a bit of gyp from Fatlips Posh Chris, Shortarse Colin, Fat Boy Fat and Snagglepuss Frankie.
So no malice - just ripping the piss - I'm off to work on my wecipes for theamed withe now.
Monday 25 February 2013
T + 5. Don't Tase me Bro
24/02/2013
Hb: 9.7 (+0.3)
Wbc: 0.82 (-0.31)
Npl: 0.77 (-0.24)
Pl: 12 (-7)
Weight: 79.5kg
I was going to duck back and update the 'Gumbo' post with some fresh information but for some reason the blog entry is locked and I can't edit it so I'll do it here. The chap I've been talking to through facebook is called Russell Cook, he had a similar jaunt (journey=arse) to me a couple of years ago although as you may have already read, his starting point was at a much much lower ebb than mine. He has since made a very respectable fist of recovery and is due to be running in the London Marathon next April to raise Money for Bone Marrow/AA/MDS associated charities. This is his give me your money page - www.virginmoneygiving.com/russellcook go there now and give him some of your benefits money (I know my audience - you like Jezza Bingo).
My tongue and mouth are starting to give me some serious gyp now, new sore patches and ulcers blossoming overnight as the chemo relentlessly chunters on and it's making eating the most delicious agony. Porridge wasn't a problem, but homemade marmalade on toast was something of a challenge. I knocked up a batch of rum and chili marmalade just before I came in and on balance the pain it caused me to eat it was only just outweighed by the pleasure it gave me to do the same. I had to nick off pretty sharpish to clean my teeth with the soft baby tooth brush to get the pointy bits of toast and chili burn off, but nothing had prepared me for what Listermint can do. To be fair, they do show the explosion going off in the model's mouth on the TV advert but I thought that was just a bit of artistic license. Fuck no!
My taste buds were all like 'Don't tase me bro!'
Listermint was all like ' Yukumyukum you suure got a purty mouth thar boy'.
Obviously - it did not end well for me.
Meanwhile two of the orderly staff had taken advantage of the time that I was in the bathroom to duck in and change my bed (it's done every day) and they looked up, very concerned as I exited the bathroom asking 'What's the matter? - are you alright? - are you upset?' Moi - 'No I'm fine why?' Ord- 'Why you cry so much then?' Girders me - GIRDERS!!!!!
Fortunately I am progressing along a well trodden path - plenty of people have been here before me, 120 a year, and the team have measures available which should allow me to happily munch on a bowl of pea gravel and toenail clippings should I choose. The first is a painkiller mouthwash called Difflan, swill 15ml around the mouth and spit every 90 to 180 minutes, does a wonderful job of numbing the poor ravaged oral tissue. There is another morphine based solution which is for the next level along and I'm not quite sure I'm there yet it's called Omlu or somesuch, maybe by the weekend I'll know.
I've managed to get into my blackberry and transfer the pictures I've taken onto the blog - there's about a half dozen dotted amongst the entries and hopefully can add a bit more insight and colour. And since I think it's especially important for people to know what I look like wearing a cardboard crapper as a cowboy hat I make no apologies for the repost. ENJOY.
Hb: 9.7 (+0.3)
Wbc: 0.82 (-0.31)
Npl: 0.77 (-0.24)
Pl: 12 (-7)
Weight: 79.5kg
I was going to duck back and update the 'Gumbo' post with some fresh information but for some reason the blog entry is locked and I can't edit it so I'll do it here. The chap I've been talking to through facebook is called Russell Cook, he had a similar jaunt (journey=arse) to me a couple of years ago although as you may have already read, his starting point was at a much much lower ebb than mine. He has since made a very respectable fist of recovery and is due to be running in the London Marathon next April to raise Money for Bone Marrow/AA/MDS associated charities. This is his give me your money page - www.virginmoneygiving.com/russellcook go there now and give him some of your benefits money (I know my audience - you like Jezza Bingo).
My tongue and mouth are starting to give me some serious gyp now, new sore patches and ulcers blossoming overnight as the chemo relentlessly chunters on and it's making eating the most delicious agony. Porridge wasn't a problem, but homemade marmalade on toast was something of a challenge. I knocked up a batch of rum and chili marmalade just before I came in and on balance the pain it caused me to eat it was only just outweighed by the pleasure it gave me to do the same. I had to nick off pretty sharpish to clean my teeth with the soft baby tooth brush to get the pointy bits of toast and chili burn off, but nothing had prepared me for what Listermint can do. To be fair, they do show the explosion going off in the model's mouth on the TV advert but I thought that was just a bit of artistic license. Fuck no!
My taste buds were all like 'Don't tase me bro!'
Listermint was all like ' Yukumyukum you suure got a purty mouth thar boy'.
Obviously - it did not end well for me.
Meanwhile two of the orderly staff had taken advantage of the time that I was in the bathroom to duck in and change my bed (it's done every day) and they looked up, very concerned as I exited the bathroom asking 'What's the matter? - are you alright? - are you upset?' Moi - 'No I'm fine why?' Ord- 'Why you cry so much then?' Girders me - GIRDERS!!!!!
Fortunately I am progressing along a well trodden path - plenty of people have been here before me, 120 a year, and the team have measures available which should allow me to happily munch on a bowl of pea gravel and toenail clippings should I choose. The first is a painkiller mouthwash called Difflan, swill 15ml around the mouth and spit every 90 to 180 minutes, does a wonderful job of numbing the poor ravaged oral tissue. There is another morphine based solution which is for the next level along and I'm not quite sure I'm there yet it's called Omlu or somesuch, maybe by the weekend I'll know.
 |
| Chemo Cowboy and friend |
Sunday 24 February 2013
T + 4. I am branded a peddlar of Dirty Filthy Pr0n Filth
23/02/2013
Hb: 9.4 (=)
Wbc: 1.13 (-0.44)
Npl: 1.01 (-0.40)
Pl: 19 (-13)
Weight: 79.8kg
Well I've been locked out of my own blog page for a bit - new experience. When I attempted to log in I was shown a screen which said that my access to the site had been blocked due to the unsuitable and possibly pornographic nature of the content.
Now I don't make any great claims for the content of the blog, there are obviously quite a lot of instances of potty mouth, but unless your interests are incredibly niche I think you'd be pretty frigging hard pushed to describe it as pornographic. Finally managed to track down the help-desk at Newton Abbots in Devon and spoke to a fella called Shaun (not complaining - better than Tommy from Delhi) very sympathetic and very helpful, got me sorted within five minutes.
So things are moving on with the destructive side of the chemo. If you're paying attention to this side of the story (I am keenly) you may notice that the falls are quite steep now and one of the main areas that I'm noticing is loss of blood clotting. I want to carry on wet shaving for as long as possible, but I'm finding that a couple of shaving nicks that would have previously gone unnoticed now make me look like Sissie Spacek at the end of Carrie. So a note back down the line for the queue, you may need a leccy shaver. Haemoglobin is unchanged (blood transfusions still holding) and the level is still at a rather pleasant 9.4 - well it keeps me happy anyway.
I was warned about the effect it can have on the mouth, principally because in the normal run of things the cells in the mouth are very short lived and replaced regularly. I think the cyto-destructive (sorry <fnar> cell destroying) properties of the chemo extend to the gob and hence can make things a bit nasty,when either the cells are killed even more frequently or are not replaced in the normal timely manner.
Woke up this morning with sores or ulcers forming along both outside edges of my tongue, quite painful until you find a way to contort your tongue so that it doesn't rub along the inside of the teeth. Luckily the docs are straight onto this and my meds are being tweaked to take account.
Checking the shower base isn't yielding any barnet yet so the tufted duck look may still be a few days away I'm actually rather curious as to how I'll look with no kind of hair on my head or face at all - at least I have an excuse for the look, imagine if out of curiosity you were to shave your head, eyebrows, lashes the lot over the course of a weekend and then turn in at the office on Monday. It would be backwards cardy and bouncy wallpaper time before you could reload.
Hb: 9.4 (=)
Wbc: 1.13 (-0.44)
Npl: 1.01 (-0.40)
Pl: 19 (-13)
Weight: 79.8kg
Well I've been locked out of my own blog page for a bit - new experience. When I attempted to log in I was shown a screen which said that my access to the site had been blocked due to the unsuitable and possibly pornographic nature of the content.
Now I don't make any great claims for the content of the blog, there are obviously quite a lot of instances of potty mouth, but unless your interests are incredibly niche I think you'd be pretty frigging hard pushed to describe it as pornographic. Finally managed to track down the help-desk at Newton Abbots in Devon and spoke to a fella called Shaun (not complaining - better than Tommy from Delhi) very sympathetic and very helpful, got me sorted within five minutes.
So things are moving on with the destructive side of the chemo. If you're paying attention to this side of the story (I am keenly) you may notice that the falls are quite steep now and one of the main areas that I'm noticing is loss of blood clotting. I want to carry on wet shaving for as long as possible, but I'm finding that a couple of shaving nicks that would have previously gone unnoticed now make me look like Sissie Spacek at the end of Carrie. So a note back down the line for the queue, you may need a leccy shaver. Haemoglobin is unchanged (blood transfusions still holding) and the level is still at a rather pleasant 9.4 - well it keeps me happy anyway.
I was warned about the effect it can have on the mouth, principally because in the normal run of things the cells in the mouth are very short lived and replaced regularly. I think the cyto-destructive (sorry <fnar> cell destroying) properties of the chemo extend to the gob and hence can make things a bit nasty,when either the cells are killed even more frequently or are not replaced in the normal timely manner.
Woke up this morning with sores or ulcers forming along both outside edges of my tongue, quite painful until you find a way to contort your tongue so that it doesn't rub along the inside of the teeth. Luckily the docs are straight onto this and my meds are being tweaked to take account.
Checking the shower base isn't yielding any barnet yet so the tufted duck look may still be a few days away I'm actually rather curious as to how I'll look with no kind of hair on my head or face at all - at least I have an excuse for the look, imagine if out of curiosity you were to shave your head, eyebrows, lashes the lot over the course of a weekend and then turn in at the office on Monday. It would be backwards cardy and bouncy wallpaper time before you could reload.
Saturday 23 February 2013
T + 3. That'll do pig
22/02/2013
Hb: 9.4 (+)
Wbc: 1.57 (-)
Npl: 1.41 (-)
Pl: 32 (-)
Weight: 79.9kg
Well it's been another full on day here at the sausage factory. As you can see from the readings above Haemoglobin is up which I attribute to the 4 units of blood I've had recently. Before the chemo, 4 units would have been enough to push me up to around the 10.8 count which for me is almost levitation point.
The other readings are predictably starting the downward curve that marks the demise of Bone Marrow v1.0. Bone Marrow v2.0 has currently finished downloading, now unpacking, unzipping and establishing loading parameters - estimated time left to load......fuck knows - just hope I'm not running on Windows Vista. I've added another measurable (weight) to the list up top simply because it's recorded every day and may provide some insight into the loss of appetite and weight loss that I've been told to expect in the coming weeks.
It's a slightly detached, weird feeling to be hearing about plummeting temperatures across the country and to see occasional snow flurries whilst being kept at a constant 19 degrees a bit like 21 day aged steak at Sainsbury's - and not having set a foot outside for more than 2 weeks. Not that I'm too upset about it, now if it was later in the year and I was missing out on the 3 days of English Summer - well then you would hear some serious bitchin' guy.
Hb: 9.4 (+)
Wbc: 1.57 (-)
Npl: 1.41 (-)
Pl: 32 (-)
Weight: 79.9kg
Well it's been another full on day here at the sausage factory. As you can see from the readings above Haemoglobin is up which I attribute to the 4 units of blood I've had recently. Before the chemo, 4 units would have been enough to push me up to around the 10.8 count which for me is almost levitation point.
The other readings are predictably starting the downward curve that marks the demise of Bone Marrow v1.0. Bone Marrow v2.0 has currently finished downloading, now unpacking, unzipping and establishing loading parameters - estimated time left to load......fuck knows - just hope I'm not running on Windows Vista. I've added another measurable (weight) to the list up top simply because it's recorded every day and may provide some insight into the loss of appetite and weight loss that I've been told to expect in the coming weeks.
 |
| Breakfast! I have about 3 lots of these per day. |
It's a slightly detached, weird feeling to be hearing about plummeting temperatures across the country and to see occasional snow flurries whilst being kept at a constant 19 degrees a bit like 21 day aged steak at Sainsbury's - and not having set a foot outside for more than 2 weeks. Not that I'm too upset about it, now if it was later in the year and I was missing out on the 3 days of English Summer - well then you would hear some serious bitchin' guy.
Friday 22 February 2013
T + 2 . 'Allo Mrs Jones, 'ow's your Bert's Lumbago?
21/02/2013
Hb: 9.1 (+)
Wbc: 2.03 (-)
Npl: 1.85 (-)
Pl: 41 (-)
After the high levels of activity and steep learning curve experienced in navigating the last couple of weeks it feels as though my little boat has crested the white water rapids and has made it to the BMT equivalent of the upper reaches of the Thames, where I am now laying back trailing a hand dreamily over the side - meandering limpidly from bosky dappled shade to lancing sunlight light as dragonflies warp in and out of view, occasionally raising my head into the buzzing air to glance downstream.
I was going to delete that, but thought it sounded so supremely poncey that it had to stay.
The message, however convoluted and poorly expressed is kosher though. All the clever stuff that needed to be done has been done and the job of the people here is to now keep me topped up with the anti-everythings while the gear they put in me last week does its job of either knocking down the old stuff or laying the foundations for the new.
I am still in quite good nick, the doc gives me the once over every day and apart from a couple of small mouth ulcers, a bit of water retention and the odd lavatorial adventure it appears I am doing at least as well as expected if not slightly better.
So, for the people in the queue - I have a fairly rigorous oral hygiene regime anyway, but have upped it in here - so it's teeth cleaned after every meal (not just first at last thing) then use inter-dental brushes to remove any bits the toothbrush can't get and then finally a damn good rinse with mouthwash. Bear in mid that I've been religious about this and have still got a couple of ulcers and you can appreciate how crucial it is.
Hb: 9.1 (+)
Wbc: 2.03 (-)
Npl: 1.85 (-)
Pl: 41 (-)
After the high levels of activity and steep learning curve experienced in navigating the last couple of weeks it feels as though my little boat has crested the white water rapids and has made it to the BMT equivalent of the upper reaches of the Thames, where I am now laying back trailing a hand dreamily over the side - meandering limpidly from bosky dappled shade to lancing sunlight light as dragonflies warp in and out of view, occasionally raising my head into the buzzing air to glance downstream.
I was going to delete that, but thought it sounded so supremely poncey that it had to stay.
The message, however convoluted and poorly expressed is kosher though. All the clever stuff that needed to be done has been done and the job of the people here is to now keep me topped up with the anti-everythings while the gear they put in me last week does its job of either knocking down the old stuff or laying the foundations for the new.
I am still in quite good nick, the doc gives me the once over every day and apart from a couple of small mouth ulcers, a bit of water retention and the odd lavatorial adventure it appears I am doing at least as well as expected if not slightly better.
So, for the people in the queue - I have a fairly rigorous oral hygiene regime anyway, but have upped it in here - so it's teeth cleaned after every meal (not just first at last thing) then use inter-dental brushes to remove any bits the toothbrush can't get and then finally a damn good rinse with mouthwash. Bear in mid that I've been religious about this and have still got a couple of ulcers and you can appreciate how crucial it is.
Thursday 21 February 2013
T + 1. Get that Alien Spawn Baby out of my Neck!!!
20/02/2013.
Hb: 8.0
Wbc: 2.83
Npl: 2.65
Pl: 54
Very early start in order to get washed and hooked up to the morning threesome - NAC, Aciclovir and Ciclosporin. They have to be out of the way so I can be ready to go down to surgery for 11am to have my new Hickman Line fitted and in order to avoid a bleed I must also have a couple of bags of platelets.
I also had another two bags of O positive blood on top of the platelets and by the end of that lot I figure that I have the makings of a pretty good black pudding on board...
Hb: 8.0
Wbc: 2.83
Npl: 2.65
Pl: 54
Very early start in order to get washed and hooked up to the morning threesome - NAC, Aciclovir and Ciclosporin. They have to be out of the way so I can be ready to go down to surgery for 11am to have my new Hickman Line fitted and in order to avoid a bleed I must also have a couple of bags of platelets.
I also had another two bags of O positive blood on top of the platelets and by the end of that lot I figure that I have the makings of a pretty good black pudding on board...
Turns out the early start was a bit optimistic as it was
about twelve thirty when a porter came for me. Getting to the Op room was a bit
more sensible this time out and I was in a wheelchair rather than the poor
fella having to slalom my bed all the way down there.
It was however my first experience of heading out and about
with the Michael Jackson style face mask on – not with his kid scaring face on
it, just the germ stoppy one. This should ring a bell with anyone who’s had to
wear one before and if you haven’t trust me on this, you do become a bit of a
freak show – and I rather think immediately considered a bit weak and feeble
and prone to some slightly pitying ‘he’ll be clocking out soon’ looks. I was
almost tempted to jump out of the wheel chair and jog alongside it doing star
jumps and high kicks to say ‘Not YET Fuckers!!!’
So there was a bit more hanging around and a consent form to
sign then it was into the Ops room for another Hickman. My only moan about this
is that you can’t see what’s going on – the area being worked on is shrouded in
blue surgical dressing stuff which goes over your head and after the first
couple of jabs of local there’s not even any sensation to guide you as to what’s
happening. The gist of it is that a hole is made on the top right of your chest
and a tube fed over the top of the pectoral muscle and clavicle then up into
the neck to either a big vein or artery.
It was only towards the end when the tube was sliding up the
jugular in my neck that I could feel anything, but very distant and if the guy
on the other end of it hadn’t told me what the feeling was, well I wouldn’t
have been any the wiser. There’s no cutting you open or anything, it’s all
positioned using real-time x-ray and you are left with a couple of knitting
needle size holes and maybe a stitch or two.
If you do have the Hickman Alien Spawn Baby fitted take care
of it especially when showering do your best to keep it dry – I was a bit blasé
about the first one and ended up making things more complicated than they
needed to be. Everyone was very polite about it falling out and no fingers were
pointed but it was in me and I was a dick for not being careful enough with it.
It’s designed to stay in place for anything up to a year, so it’s a fairly
hardy piece of kit once your body has formed scar tissue to hold it in place,- it’s
just the first few weeks where the extra care is needed.
After another bit of hanging about it was back to the wheel
chair and I pushed the porter back up to Waddington Ward at high speed– figured
it was my turn.
Mai had all the rest of the bags set up and ready to run as
soon as I got back, I think it was phosphates and ciclosporin and she very
quickly pulled the CVC Alien Spawn Baby out of my neck, cleaned me up and got the Hickman
plumbed in and loading.
Now post-transplant, since all the extra bags of stuff have
been going into me I’ve noticed that my waistband has been tightening – and it
turns out that I have water retention. At one point my stomach was a full-on
water gut blocking my feet from view – GROSS so I was given a ‘water pill’ via
the Hickman and told to prepare myself. Within 15 minutes I could feel my
kidneys start to cycle up like turbos and shortly after that the pattern for
the next two hours was set. Two litres sent off for recycling in 105 minutes
not too shabby and I felt a hell of a lot better for it – however I’m not
completely deflated and I rather suspect something like this may be needed every
couple of days.
Another subtle change that I’ve just picked up on is that my
face is filling out must be from the
steroids - I used to have fairly sharply defined cheek bones and I’m now seeing
my face starting to round out. It’s OK at the moment but if it continues there’s
a distinct chance that I’m going to turn into 'What's the scores George Dawes' when my barnet goes.
So T +1 done and dusted and I actually feel pretty great and
healthy now the fug of the chemo is clearing from my head, however I’m keenly
aware that none of it is down to self-propulsion yet and that I’m dependant on the
baggies for my day to day well-being.
Tuesday 19 February 2013
T - day (part two). Sitting in Jebus' Waiting Room (pictures)
I am more than happy to be able to tell you that the stem cell infusion took place today (19th Feb.) between 2.25 and 2.50pm. No flags and whistles or marching bands just me and Nurse Mai keeping a watchful eye on the pinky red bag of juice as it was gravity fed down the tube across my chest and into the CVC at my neck. They don't use the infusion pumps for this procedure for fear of damaging the stem cells, so a nurse is on hand throughout to make sure the precious goop doesn't log jam in the tubes - and if it does it is given a 'push' with a syringe of saline. The prep and premeds were just as involved as for chemo with the addition of the JGJNEJ preservative* which will give my sweat the pleasant odour of sweet corn for the next few days, not that sitting on your arse in an air-conditioned room gives much cause for that.
One of my friends suggested that I should have gone the whole hog and ordered a plate of asparagus for dinner tonight to complement the corn, but sadly it's not on the menu. I've spent the rest of the day sleeping whilst receiving a couple of units blood transfusion. The chemo continues to do its' job, as my existing manky blood production facility is gradually demolished to make room for the spanky new seeds to finds a bed and start to germinate. My haemoglobin level had dropped to 7.0 hence the need for a couple of baggies. To illustrate what is happening with my blood content and for future reference I will endeavour to include the 4 main blood measurables in each daily blog entry. Apologies for the lapse into Management Bullshit there...
They are as follows - definitions are as I understand them to be, not text book (I might stretch as far as a quick gander at wikipedia);
Hb (Haemoglobin): primarily found in red blood cells and used in moving and delivering oxygen around the body to where needed. I think it plays a part in giving 'caucasians' a pinky skin tone.
Usual count for women 12 -15 - usual count for men 13-16
WBC (White blood cells): Count of white blood cells found in sample. Normal count range 4-11
White blood cells are responsible for attacking infection in the body.
(Pl.) Platelets: Responsible for clotting the blood. Normal count 150-400
(Npl.) Neutrophylls: A type of and most common WBC . Normal count 2.0 -7.5
When I came in to Kings a couple of weeks after a transfusion my levels were Hb: 9.4 WBC: 1.75 Pl: 68 and Npl.: 0.58.
 |
| Mid transplant note infuser running across chest to CVC in neck. |
One of my friends suggested that I should have gone the whole hog and ordered a plate of asparagus for dinner tonight to complement the corn, but sadly it's not on the menu. I've spent the rest of the day sleeping whilst receiving a couple of units blood transfusion. The chemo continues to do its' job, as my existing manky blood production facility is gradually demolished to make room for the spanky new seeds to finds a bed and start to germinate. My haemoglobin level had dropped to 7.0 hence the need for a couple of baggies. To illustrate what is happening with my blood content and for future reference I will endeavour to include the 4 main blood measurables in each daily blog entry. Apologies for the lapse into Management Bullshit there...
They are as follows - definitions are as I understand them to be, not text book (I might stretch as far as a quick gander at wikipedia);
Hb (Haemoglobin): primarily found in red blood cells and used in moving and delivering oxygen around the body to where needed. I think it plays a part in giving 'caucasians' a pinky skin tone.
Usual count for women 12 -15 - usual count for men 13-16
WBC (White blood cells): Count of white blood cells found in sample. Normal count range 4-11
White blood cells are responsible for attacking infection in the body.
(Pl.) Platelets: Responsible for clotting the blood. Normal count 150-400
(Npl.) Neutrophylls: A type of and most common WBC . Normal count 2.0 -7.5
When I came in to Kings a couple of weeks after a transfusion my levels were Hb: 9.4 WBC: 1.75 Pl: 68 and Npl.: 0.58.
I've had a couple of mails from people saying 'Great job -so you'll be out in what a week or so?' If only this were one of those sodding Hallmark life story films on Channel 5 that I've learned to avoid like a dogs eye sandwich, then we'd go all soft swirly and orchestral fade out with me running down Camberwell High Street in slow-mo to be reunited with my family in a triumphant group hug outside the Tennessee Chicken or the Dixie Fried Chicken or the Morleys Chicken and Burgers (sorry - South London joke there) but it's not.
I'm going to spend the next couple of weeks relaxed on the outside, flapping on the inside waiting for news on stem cell engraftment. The fact that the stem cell infusion went off well isn't the end of the deal. We now have to hurry up and wait for up to 2 - 3weeks to be sure that the immuno-suppressants are preventing rejection and for signs in the daily blood samples that things are working. Initially I can expect to see the blood content levels drop off as the chemo does its stuff which will also engender the destruction of the existing immune system, loss of hair and a lot of sleeping - a little taster of being 90 years old, I may even spout wildly inappropriate cultural remarks and begin telling all and sundry that they don't even know they're born these days...
The positive sign that the docs will be looking for is the re-emergence of the neutrophyl count in my blood which shows that the donor stem cells have set up shop and have commenced business. Then things boil down to how well I manage to avoid picking up infections - the nursing staff tell me no matter how careful you are that it's impossible to avoid illness of some form when immunity is less than that of a newborn (even newborns inherit some parental immunities) the only variable is to what degree. I've said I'm OK up to and including a hangnail or maybe even a verrucca but if it's anything more severe, then go for amputation.
I've been told that my CVC is to be replaced by a Hickman tomorrow and that I'll be having a transfusion of platelets to ensure that there isn't a repeat of the gore fest that followed the last one being fitted. My platelet count is currently 22.
*(JollyGreenGiantNibletExtractJuice)
T - day (part one). The end of the start.
Well I'm due to be getting the stem cell infusion today after lunch. Preparations are going off pretty much like a normal day, I started on infusions of Aciclovir, Ciclosporin and NAC at about 6.30am together with the pills, - anti sickies steroids and a new one which is like a soluble Vitamin C tablet.
 |
| Here's what all the fuss is about - 4.5 million stem cells |
A Hickman Line would usually be used to deliver the cells, but there hasn't been time to whack another one in me so today it's going to be via the CVC, which has a narrower bore, but all of the four access tubes has been flushed after each infusion and the best ie clearest will be chosen today. Another nugget of info for the people in the queue, just before receiving the stem cells this arvo I will be receiving an injection of preservative to protect the incoming new cells. A side effect of this is that I will smell like sweet corn for a couple days as the stuff works its way though my system.
Two members of the post transplant team dropped by to see me yesterday - first was the physio who has given me a range of exercises to prevent me from vegging and the second was the post transplant coordinator who will be my contact for the myriad questions that are bound to come up short term and will be looking after me through to recovery and beyond. Again I haven't used names yet but will if they are OK with it - and I remember to ask.
I found out how to look at the blog stats a couple of days ago and had a bit of a shock. Considering that I thought the target audience would be family, friends and work buddies it knocked me flat on my arse to see that up until last night it has had 1250 page views since I started posting again a week ago, especially since my only other regular writing output is the Tesco shopping list. Know your audience though, so I thought I'd let you know that the two most viewed pages so far were both written when and about when I was a seething mass of steroids, chemo, coffee and insomnia. Recovery dictates that things will be a bit less pharmaceutical than that so I will be producing much less of the same and will have to accept that the figures have now peaked! More later - post transplant.
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