11/03/2014
Bloods
Haemoglobin: 91
White Blood Cells: 2.97
Platelets: 31
Neutrophils: 2.47
Weight: 62.4 kg
So today pretty much marks the first week of being back in Kings. Re the bloods, well some measurements have dropped off a wee bit. I've been given a bag of platelets and a bag of O+ blood today to boost Haemoglobin and Platelet counts in anticipation of going over to Guys Hospital Tomorrow for Photo-pheresis treatment because apparently a platelet count of above 50 is preferable if you're going to be moved about and poked and prodded.
Still waiting to hear back from the Bone Marrow Biopsy test and have also been told that I need to do a glucose absorption test over a 5 hour period tonight, so they're sure pulling out all the stops and looking at every option. The team have stopped with the morphine jabs now (shame) as the stomach grumbles and cramps are hardly troubling me at all and are pretty much negligible compared to this time last week.
Writing this next bit slightly prematurely but time kind of conspired against me. Popped a couple of sleepers at 2200 expecting to go through until at least 0300 when the nurse was coming in to hook me up to a bag of O + to prep me for Guys today. This is to be followed by another bag of platelets, then blood tests for Guys as proof they can go ahead with the P-Pheresis later today (Weds). Then more blood tests for the Kings College lab to give a daily count, then I have to finish a Glucose absorption test which has meant no dairy since midday today and NBM after midnight. They have to take a sample of a first thing pee then you need to drink a calibrated amount of glucose and deposit all of the pee produced for the next 5 hour in a special container. Next is to come off the NBM for breakfast (8ish), shower, shave and get my crap together for the trip to Guys, remembering my special piss pot all the while. I am so gagging for a strong black coffee about now.
Natruellement 2 sleepers (zopiclone) which would have normally been enough to stun the hind quarters of a bush buffalo sprang me wide awake at midnight - thinking it 3am - and I go marching off down the ward to get the nurse to start the procedures and stay ahead of the game. So as a consequence I've spent 3 (not entirely wasted) hours tidying up my laptop i-tunes library which has detritus of every removable hard disk I've ever borrowed, freebies, mojo and uncut cds, old podcasts and even bootleg stuff that I used to get from Kazzoo back in the early seeding days.
So after binning reams of duplicates, unknown classical pieces, untold samba, rhumba and salsa compilation albums, Celine 'Stumpmouth' Dion, - even get this - Noel Edmonds relaxional pan pipe moods (wtf)! any Queen album made after 'A Day at the Races' and any metal after 1992, I can finally see the wood for the trees. Just emptied the recycle bin and cleared 23.4gb of crap music.
Reading the above back on Weds night after most of the the stuff that should have happened did actually happen, I think I'll leave it unedited as the writing is actually kind of frazzled and cinema verite <bouf>.
Had to fight like a motherfunster to get some coffee and breakfast in the end - and the transport dept sent the vehicle to collect for me at the wrong building for an hour but apart from that all went swimmingly.
Going to go to sleep tonight looking like a Poundshop Wolverine. The photo-pheresis dept at Guys decided to leave the needles in my forearms overnight to speed things up for the second visit tomorrow. So for those of you who know about these things, I have a number 14 (green cuff) needle in each forearm plumbed into 2 catheters each dressed in gauze. For those of you who don't, try digging a pub dart horizontally along under your forearm skin for 3/4 inch and sticking it there with gaffer tape.
Wednesday, 12 March 2014
Tuesday, 11 March 2014
T + 384 days. "My name is Stan and this is Brian - We're on a quest."
09/03/2014
Haemoglobin: 10
White Blood Cells: 4.85
Platelets: 39
Neutrophils: 4.43
Weight: 64.1 kg
Some stats to start off with (may I say as an ex-local authority middle manager oooooohhh luvverly excel stats - these used to get my juices flowing) as it's been a year and a bit since I started writing this I thought I'd go through the blogspot stats package to see who has been following and where. Here's how it breaks down 7087 separate instances comprise the top ten viewers as tabulated below
| Country | No of Views | ||
| 1. United Kingdom | 5394 | ||
| 2. United States | 620 | ||
| 3. Canada | 231 | ||
| 4. Latvia | 219 | ||
| 5. Germany | 187 | ||
| 6. Ireland | 116 | ||
| 7. Ukraine | 116 | ||
| 8. Russia | 85 | ||
| 9. Poland | 63 | ||
| 10. France | 56 | ||
One thing I do know is that I have so little personal application to stuff like this that there's no way if I hadn't been effectively quarantined in a small room with occasional access to psycho-active pharmaceutical and a laptop that any of it would have been written - Ha!
Back to business if memory serves, high WBC and neutrophil counts indicate that the immune system is fighting back at something so maybe this indicates it's having a pop at the GVHD. In the day I'm going around four hours now between needing the top up morphine jabs for my stomach, which is a huge improvement on the earlier part of the week when it was barely holding me for two hours at a stretch.
I've put on weight - which is brilliant as I have been really making an all out effort to eat consistently. The docs have now decided not to wait for one last night to see if I manage to go to the loo unaided as I haven't managed for 5 days now so have just been given a couple of Senna tablets - let's hope it's gentle. A guy we know called Russell Etherington who used to work with Jeannette once memorably imparted to me that - in terms of medical tissue the maxim "Shite is Light" always applies. I'm banking on the fact that sitting here filling my face and doing hardly any physical activity for 5 days will have kicked on a couple of kilos on me.
Since I'm not dispensing my own meds any more it's a bit harder to keep current with the dosages but as far as I can tell; my prednisolone has been reduced to 40 mg per day (which is still high) but probably about due for titration as I've got a brand new thing going on to tell y'all about in a bit. Mycophenalate has also been dropped to 750mg twice a day - from 1000mg three times a day. I'm a little bit concerned about this final change as these are the pills that keep my mouth ulcers in line and I've started to notice they're becoming a little more sore each day and live in dread of a full tilt return like last time. Cyclosporin has been maintained at 150mg twice daily as the general big daddy of immune-suppression.
If you will permit a rather laboured simile, I'll liken what the team are doing here to one of those plate on a stick spinning/balancing acts from the old style talent hunt shows of the 70s and 80s - with the docs trying to keep all the GVHD symptoms (plates) at the very least stable - if not in recession, at the same time as trying to minimize or even reduce my drug intake - which would concern itself with the wiggling of the sticks to keep the GVHD spinning and...err oh bollocks - not a very good simile at all there really....
My new thing is that since the platelet count has dropped - and in combination with the skin thinning side effect from the Prednisolone I've found that I make myself bleed from little scratches wherever I itch. The cumulative impact over the last couple of days means that pretty much anywhere that I've had a quick itch has left a drawn a spot of blood, so my lower and upper arms, forehead, scalp, face and back all look like I've been in mortal combat with hordes of Ninja Field Mice. I've taken to wearing the disposable gloves when the urge gets too bad so they're getting a chance to heal I did also trim my nails back to nothing which might have been sensible to do in he first place. Sounds worse than it actually looks but I think it may impact on my progress through to the beauty pageant regional finals from the local events here.
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| The Small Faces circa '68 getting on with the neighbours. |
Listened to a stunning Small Faces documentary on 4 Live earlier (it maybe still on i-Player) covering the Ogdens Nut Gone Flake Album (Song of a Baker, Tin Soldier, Lazy Sunday et al.) Hard to credit that these guys were only 21 years old when they made this and had already been making music like Sha La La La Lee, All or Nothing and Get Yourself Together for 3 years.
Amazing to hear Steve Marriot and Ronnie
Lane being interviewed sounding so young and vital considering the shite-storm that both of them were facing in the coming years - and most of all from the Small Faces ensemble just the natural raw blues of their free musicality and effortless creativity that seemed to flow from them at this time. I suppose the aftermath - that it broke the band - with Marriot jumping ship to form Humble Pie signifies that it was not the all harmonious bunch of best mates making music together that my paisley tinted memory would wish it to be.
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| Early Days |
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| Creative Zenith wheels wobbling |
Father Murray dominated and bullied him and the rest of the group, Dennis ridiculed him and I think the less said about Terminator Mike Gold's swivel-eyed, thousand yard stare the better.
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| Wheels off jib jib ! |
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Saturday, 8 March 2014
T + 381. 'Ow you say time to 'urry up and wait encore un fois...merde alors mes chou-fleurs!
Bloods 07/03/2014
Haemoglobin 10.2
White Blood Cell 5.5
Platelets 42
Neutrophyls 4.8
Not too shabby given that I'm on ciclosporin, mycophenolate and ganciclovir IV.
I think I've pretty much contributed to all the tests/scans that were required from me, the last of which was a bone marrow biopsy (the needle in the back of the coccyx) taken very efficiently and painlessly this afternoon. So the plan is to sit tight for the weekend and wait for the results to start filtering in early next week. The endoscope (stomach and upper gut scan) showed some traces of gastritis, which would go a long way to explaining the gut pain. It also looks as though there is on-going GVHD in my lower gut, but I believe that further verification is required. The GVHD in my mouth is stable just - two small tracks of ulcers on the inside of either cheek which are neither growing nor shrinking and currently giving me no major gyp. The meds for this have been sharply reduced so I'm keenly aware that a flare up could be on the cards.
I'm still receiving additional hydration via saline drip and also getting IV Ganciclovir (instead of acyclovir) to specifically target the re-emergent CMV (Cyto Megalo Virus) which won't play ball by just f**king off and staying dormant as it does with the bulk of the 60% of the UK population that has it anyway. This will be my third tussle with this little shitehouse of a virus - Valganciclovir (the tablet form) has proved sufficient to supress it in the past but I think that this time out the team here have decided to go with the IV infusion just in case gastric problems are preventing proper absorption via pills to the gut.
Confusingly, some of the CMV symptoms marry up with the gastric problems, but the diagnosis period doesn't - which is odd and I don't envy the docs who have to chase their tails around on this one little bit. The one CMV symptom that I can recall as being distinct and not overlapping with the other stuff is a headache which I've treated simply by dosing up with OTC painkillers.
Having slated the crap out of the breakfast menu yesterday I have since come across a few half decent meals. One is a chicken, mushroom, broccoli and cheese pasta from the standard menu the others are from the Religious, Ethnic and Vegan menu - which also includes Kosher food and I've had Sesame Chicken Schnitzel in Pineapple sauce with little round potato balls and white pickled cabbage and then another chicken meal - Kosher Stuffed Chicken with rice and some kind of brown onion sauce and fresh green beans - really pretty tasty and beats the crap out of the stuff they give the Meschugana to eat from the Goy menu! There's a whole other bunch of stuff on there yet to try like jerk chicken and various curries - even curried goat with rice - which I may have a punt on,
Tonight I'm having a bash at West African Jallof Rice with Chicken so fingers crossed - I mean I don't know what it's supposed to taste like so who's to tell if it's crap or not. The difference with ordering from the standard 'English' menu is that you have a fair idea of how the stuff is supposed to taste and look and I think we can all agree that 'fresh egg' omelette shouldn't be wafting the gentle day glo aroma of air whisked fish farts across the brekkers table - unless it's that rarest of NHS delicacies 'The Kings College Blue Sturgeon Caviar and Chaume Surprise' which comes close to describing it.
Later...
Turns out that dinner was a bit hit and miss as well - 98% of it was Jallof Rice which tasted like chilis and Land Rover footwell dust and the chicken looked to have been cooked by chasing it through a minefield with a pointy stick - maybe that's the translation!
09/03/2014
Brekkers today will be Croissant, Danish pastry and Special K with milk so as to run a test on whether I'm still silly buggers with lactose. I do love the experiments on science day!
In a fairly typical perverse reaction to entering hospital my GI system has decided that its going to make me look a liar by spontaneously recovering from the squits - when all I've done for the past 5 to 6 weeks is to complain to the consultant about the ridiculous amount of time I've been spending on the throne due to being a bit loose in the hoose. Not that I can genuinely complain - better I s'pose to look like a tight arsed liar than a crap sodden cholera victim any day. The thinking here is that it's due to morphine having a binding effect on the batty - so fair enough, I'll go with that.
Haemoglobin 10.2
White Blood Cell 5.5
Platelets 42
Neutrophyls 4.8
Not too shabby given that I'm on ciclosporin, mycophenolate and ganciclovir IV.
I think I've pretty much contributed to all the tests/scans that were required from me, the last of which was a bone marrow biopsy (the needle in the back of the coccyx) taken very efficiently and painlessly this afternoon. So the plan is to sit tight for the weekend and wait for the results to start filtering in early next week. The endoscope (stomach and upper gut scan) showed some traces of gastritis, which would go a long way to explaining the gut pain. It also looks as though there is on-going GVHD in my lower gut, but I believe that further verification is required. The GVHD in my mouth is stable just - two small tracks of ulcers on the inside of either cheek which are neither growing nor shrinking and currently giving me no major gyp. The meds for this have been sharply reduced so I'm keenly aware that a flare up could be on the cards.
I'm still receiving additional hydration via saline drip and also getting IV Ganciclovir (instead of acyclovir) to specifically target the re-emergent CMV (Cyto Megalo Virus) which won't play ball by just f**king off and staying dormant as it does with the bulk of the 60% of the UK population that has it anyway. This will be my third tussle with this little shitehouse of a virus - Valganciclovir (the tablet form) has proved sufficient to supress it in the past but I think that this time out the team here have decided to go with the IV infusion just in case gastric problems are preventing proper absorption via pills to the gut.
Confusingly, some of the CMV symptoms marry up with the gastric problems, but the diagnosis period doesn't - which is odd and I don't envy the docs who have to chase their tails around on this one little bit. The one CMV symptom that I can recall as being distinct and not overlapping with the other stuff is a headache which I've treated simply by dosing up with OTC painkillers.
Having slated the crap out of the breakfast menu yesterday I have since come across a few half decent meals. One is a chicken, mushroom, broccoli and cheese pasta from the standard menu the others are from the Religious, Ethnic and Vegan menu - which also includes Kosher food and I've had Sesame Chicken Schnitzel in Pineapple sauce with little round potato balls and white pickled cabbage and then another chicken meal - Kosher Stuffed Chicken with rice and some kind of brown onion sauce and fresh green beans - really pretty tasty and beats the crap out of the stuff they give the Meschugana to eat from the Goy menu! There's a whole other bunch of stuff on there yet to try like jerk chicken and various curries - even curried goat with rice - which I may have a punt on,
Tonight I'm having a bash at West African Jallof Rice with Chicken so fingers crossed - I mean I don't know what it's supposed to taste like so who's to tell if it's crap or not. The difference with ordering from the standard 'English' menu is that you have a fair idea of how the stuff is supposed to taste and look and I think we can all agree that 'fresh egg' omelette shouldn't be wafting the gentle day glo aroma of air whisked fish farts across the brekkers table - unless it's that rarest of NHS delicacies 'The Kings College Blue Sturgeon Caviar and Chaume Surprise' which comes close to describing it.
Later...
Turns out that dinner was a bit hit and miss as well - 98% of it was Jallof Rice which tasted like chilis and Land Rover footwell dust and the chicken looked to have been cooked by chasing it through a minefield with a pointy stick - maybe that's the translation!
09/03/2014
Brekkers today will be Croissant, Danish pastry and Special K with milk so as to run a test on whether I'm still silly buggers with lactose. I do love the experiments on science day!
In a fairly typical perverse reaction to entering hospital my GI system has decided that its going to make me look a liar by spontaneously recovering from the squits - when all I've done for the past 5 to 6 weeks is to complain to the consultant about the ridiculous amount of time I've been spending on the throne due to being a bit loose in the hoose. Not that I can genuinely complain - better I s'pose to look like a tight arsed liar than a crap sodden cholera victim any day. The thinking here is that it's due to morphine having a binding effect on the batty - so fair enough, I'll go with that.
T + 380. Good morphine starshine, the earth says hellooooo
06/03/2014
and helloooo there to you - you bunch of special lovers - as you may be able to judge I am now in a position to heartily recommend starting the day on a 10ml shot of morphine - works a treat at blunting the edges of all but the most severe colitis/gastritis gut pangs - so I give a jolly two thumbs up for good old prescription opiates.
As of midnight I was started on nil-by-mouth so it looks like I'll be getting the endoscopy/colonoscopy? - the one that goes down your throat, later today - hopefully this morning. This will give the team a good look at the extent of the GVHD/ulceration that has re-emerged to hopefully inform and direct the next stage of treatment.
All my prescriptions from home have now been duplicated by the pharmacy here so Meds are distributed by the nursing staff rather than me having to use the daily/weekly personal dispenser that I brought in with me. There's been a bit of dosage juggling going on - the principal immuno-suppressant Ciclosporin has been bumped up to 175mg twice a day, the drug treating my oral GVHD mouth ulcers Mycophenalate has been dropped to 150mg twice a day (half of the dose from a few weeks back) and of course there's the lovely 3 hourly painkilling jabs which have given me back a degree of sanity. Speaking of which the rest of this blog entry goes a little off piste as regards MDS, GVHD and my hospital stay. The morphine appears to have made me feel the need to express a view on the obesity epidemic we are brewing in this country and the interlinkedness of loads of other stuff to it.
Later...
Before I let loose with the morphine rant, here's an update on the rest of the day's events for 06/03/2014. I had the CT scan done today and also the endoscope where a camera is passed down through the mouth into the stomach. Having had this procedure a couple of times before, I was expecting to be semi-conscious and to feel a degree of discomfort ie gagging as the tube is fed into you, but the anaesthetist was pretty much bang on as I felt nothing between the time that the facemask was hooked on until I gently came to in the recovery room. Good job and well done to all involved. I was a bit surprised to find that I needed a top up on my platelets before they would go ahead with the endoscopy - the count was down to 26 which is a bit low, but if I'm honest not entirely unexpected given the quantity of different immuno-suppressants I've been prescribed.
Seeing all my boxes of meds piled up made me think of that (health?) show on E4 - Supersize vs Superskinny, where the obese UK dieter is shipped across to the USA to meet someone who is maybe 10 years and most often at least 10 stone heavier than the UK counterpart. There is usually a section of the show where the American participant produces a huge black bin sack of meds and starts laying out the beta blockers, diabetes meds and all the varied pharma designed to keep them alive.
The more I think about the situation in America, the more I come to conclude that although these people assume the majority of the responsibility for the neglect they have inflicted on their bodies and health, there also comes a point at which they have become trapped. A few years ago my tack would have been definitely less empathic and very different, more along the lines of stop whinging so much, then stop eating so much and try changing seats more than once a day you disgusting corpulent disgrace. But once you start to consider the external factors influencing the emergence of a new obese demographic in the US and UK populations it should come as no surprise that as usual it's fuelled by money baby - pure bright shiny toothed corporate greed.
The Fast Food Corps coin the cash initially by ushering people gently into the junk food lifestyle - emphasising the positive elements; good deal or your family/ togetherness/ shared bonding experience / part of a balanced diet because we also pop a bit of salad on top etc. Then the Pharmaceutical and Health Insurance Industries coin it at the other end of the process by selling treatment and drugs that keep the ulcerated, diabetes ridden hulks just alive enough to carry on consuming.
Principal financial beneficiaries of this in the US would be the health insurance and health delivery companies - as I have mentioned in previous blog entries I am more grateful than I can ever truly express that I was born to a country that provides universal healthcare free at point of delivery to its citizens. My inside expert (wife - Pharma Industry Sales and Marketing) tells me that the government in the UK have taken pretty stringent steps to curb the kind of excesses that used to occur in the Pharmaceutical Industry in the 80s and 90s which were apparently 'the good old days' of money making for all involved, but this appears to be far from the case Stateside -I'm guessing that the sheer scale of revenue involved gets the Health Industry lobbyists a seat at the top table along with the banks and defence contractors. Jeannette and I stayed in New York for a week in 2007 and I can still remember my surprise at seeing what in this country would be considered prescription drugs for diabetes, impotence and blood pressure being advertised on the TV - still not sure if its a good or bad thing - mind you I saw an ad for stiffy pills on ITV just the other day...so this country is very much mirroring the US where corporate/governmental congruity permits.
It has been explained to me that contrary to how it sometimes appears from 'scandal' pieces in the UK press, the NHS keeps a pretty tight rein (some would say too tight) on Pharma companies activites and pricing by prohibiting or severely limiting the kinds of inducements that sales forces would have used of old to secure orders. Wining and dining is out of the window as are 'training' days at premier UK events, you know Ascot, Chelsea Flower Show etc - all these things have been firmly left behind in the mid nineties under guidelines issued by the ABPI (Association of British Pharmaceutical Industry), which can limit the % of profit that a company can make over the course of a tender and in some cases get 'cashback' from the companies entering into the contract.
All fair enough and more power to the bright sparks who for once you may say are seeking to ensure that not every government contract needs to end with the tax payer taking another shafting from the predatory private sector. But apparently this sort of thing cuts both ways - now that the accountants and middle managers are in the ascendant in the NHS, drugs and medicine acquisition contracts have taken on similar profiles to other government departments. I can remember a phrase used in tender document packs - something along the lines of 'we do not undertake to accept the lowest or any tendered contract price..' except that they always do and it's invariably the cheapest. People in the know (my wife being one) say the downside of this is that a lot of 'dirty' drugs make it onto the hospital pharmacy shelves for prescription purely due to pricing. By 'dirty' I don't mean toxic as such, its more like if there is the option of two drugs that accomplish almost identical treatment outcomes with one priced lower due to slightly unfavourable side effects and maybe the other is marginally more expensive due to faster action in treating the condition - well I'll let you take a stab in the dark as to which one the quill sucker at NICE is going to plump for and place on the NHS formulary.
Next have to be the food and fast food industries, when I was in the US I wandered round their supermarkets slack jawed at the range of choice and variety on offer - but not necessarily in a good way - Choco-nut slurple berry maple syrup pancakes with pork cop sprinkles. Equally I was shocked at the way that pretty much any food type you can imagine will be mixed with corn syrup or fructose (therefore not labelled as sugar) and then combined with any other number of foods, resulting in avalanches of high carb, high sugar comfort food - the UK is not so far behind here- people unwittingly becoming hooked on stealth sugar in everyday innocuous looking foods. Supermarkets pile the stuff high because it's habit forming and therefore profitable - not because of its health benefits - and yet, - and yet like smoking there is always the element of free will. Big Food Corp is not forcing this stuff into your sausage-like grip and jamming it down your throat - it's you doing that.
The resultant boom is big money with diabetes, high blood pressure and all the associated illnesses (and support services) required to treat the ever increasing bariatric population. Given that diabetes tends to exhibit as a chronic rather than acute illness, the Pharma companies have an enduring bedrock of bread and butter cash flow. The course of inaction on which this country is currently set can only grow the problem - even if the observations were based solely on what I see around me in a small slice of coastal south east England it would be bad enough but when you upscale this from a local population of maybe 200k to a nationwide population of >60m, the numbers start to look very scary and headed only one way unless people in food industry, government, health care and indeed the public at large can be persuaded of the universal benefits of getting food right.
It is pretty much to be accepted that fast, convenient food is a cultural mainstay in this country and as a democracy people have the absolute and individual right to decide what it is that they do or do not put in their faces (unless its a crack-pipe, handgun or maybe a flamethrower) - but what if the choices with which we are presented are tainted from the off? I'm from the generation that remembers freshly prepared and home cooked food as a kid - although I would wolf down crap food just as eagerly as the next kid given the opportunity, but I've also in recent years come to know the satisfaction and enjoyment of preparing home meals from scratch.
This is a model that no longer exists as the norm in millions of households across the UK.
In its overarching bid to provide time poor people with access to quick quality cuisine or to simply sell plain old fashioned junk food to the less well off, Big Food Corps have created a very real fracture in the food chain. Fewer people cook for themselves any more and have therefore abdicated responsibility for the content of their foodstuffs - leaving it to the manufacturers (who just might not always have your best interests at heart) to stand as the arbiters of what goes into your food.
If I choose to produce a reduced sugar or low salt recipe I can tweak the ingredients to suit my taste or dietary needs while prepping it at home. Ready meals now form a major section of market share and take this facility entirely out of the hands of the consumer (unless you want to add more sugar or salt) and I heard a jarring example of this recently...
Again referring to Radio 4 - I was cocking half an ear to a show covering Health Care and Support Services and the impact that cuts are having on small scale local projects across the country. One item featured a health worker in the North West of England talking about a scheme she was having to close which taught mothers the further stages of feeding after their baby is weaned and starting on semi solids.
At this point I think I was probably rolling my eyes theatrically and muttering some distinctly non Radio 4 language about making busy work for interfering arseholes whilst suggesting she make a swift trip to leave a deposit at the 'Bank of the Fucking Obvious'. But what I heard next was a revelation. Firstly, many of the clients attending the clinic were primarily young parents who had coped with the early stages either through the use of breast or formula feeding or a combination of the two. Where they were coming unstuck was in moving up to the next level of nutrition. I suppose the clue is in the age group, what do teenagers like to eat most? yay- nutritional garbage. Before the health worker arrived on the scene and started working with this particular group of parents it had been common practise amongst this peer group for them to liquidise their usual fast food diet in a blender, render it down to a semi solid paste and feed the goop to their babies - not as a rare naughty but nice treat that you might give to a 4 or 5 year old after a trip to the cinema, but as a primary component of a semi-weaned infant's regular diet.
We've all I've seen baby goop and its all the same green or brown slop anyway - right? Wrong. So a meal would consist individually of either a kebab, chicken nuggets, cheese burger or even pizza - rendered to a paste - all of it containing the full unhealthy adult levels of salt, sugar and sat fats. This rocked me back on my heels - where else is it happening? - and what chance in hell do these kids have if the parents have no conception that what they're doing is wrong?
Whilst I don't wish in anyway to draw a comparison between possible addiction to sugar in food and nicotine addiction from smoking, I would however like to suggest the following scenario. What if we are now at a point akin to that reached in the 70s/80s where a ground swell of opinion and medical evidence was finally gaining sufficient head of steam to alert people to the fact that cigarettes weren't actually a jolly good work out for the lungs and that smoking could actually kill you.
In the intervening forty years smoking numbers in this country have decreased from 40% to around 20% of the overall smoke eligible population - even more importantly, the aura and perception around smoking has undergone a retrograde makeover, from being cool, sexy and rebellious to being dirty, anti-social, marginalised and most of all - deadly. The Big Tobacco Companies were never going to go bust, they just rejigged and diversified their money across different businesses and countries, judiciously paid people off when legally cornered and looked further afield for new markets where in turn they have probably bought at least another 40 years or so before these new markets (I'd hazard Africa, India, China) start to come to terms with smoking as a health hazard rather than a wacky hobby and, - thinking along the speed at which things get done in such regions I'd call 40 years fast-tracking.
The scale and speed of change in the first world have been glacial - Big Tobacco has fought (and are still fighting) a stubborn rear guard action which slowed but never halted the campaign to depopularise smoking. The important strand is that change was initiated, refreshed and sustained through consistent year on year pressure and education. Freedom of choice is the same as it ever was, people can decide whether to smoke or not, but now the deck isn't loaded - there is no obfuscation or diversion as it is universally acknowledged by all but the dimmest of 40w thinkers (or lobbyists) that smoking will wreck your health and then it will kill you.
So seeing that the Big Food Corps are as entrenched now as Big Tobacco was then, why shouldn't the battle for healthier food proceed in the same way? - After all the tobacco war is almost at tipping point in Western Europe and the majority of the English speaking world - if the only way is the hard slow way of joining up the dots of many minute victories to eventually secure a medium sized one - well have at it. Any realist will tell you that there is far too much money at stake for there ever to be any meaningful change based on voluntary codes of conduct or self policing strategies introduced by the companies themselves. Nothing will move unless the droves of opposing legal chappies for each side are assembled and troughing it up on their client's behalf for all they're worth.
A UK Minister was recently questioned on Radio 4 about on the subject of guideline proposals issued by the Swedish Government recommending that Sweden's food producers work toward reducing (by about 30%) the amount of sugar (fructose, glucose, corn syrup etc) added to food and encouraging lower carb diets - not silly Atkins type levels, but a bit more sensible than is currently in place. When asked if something like that should be considered for this country (anticipating the looming BMI tsunami) the proposals were instantly dismissed out of hand by this Minister I wish I could remember the bugger's name,- quashed as impossible to implement. Why is this such a monumental task as to be too huge to even consider? It seems to me to be very much in parallel to the tobacco scenario outlined above, so surely (although I imagine not in my lifetime) a series of incremental agreements and laws could be implemented to 'sensibilise' the content of mass produced food.
Although normally I welcome EU interference in our country's laws and policies just about as much as any Island Brit, I am still perfectly able to concede here that an EU ruling or law on this issue would be suitable and fit for purpose - if ever there was a common interest for a common market this has to be it.
I suppose the next question should be 'Why should we wait for so damn long? People are eating themselves to death now - what about the current generation?' The jaded, but I imagine, entirely unblinkered view is that Big Food Corps would much rather spend less money and kill time fighting in the courts to maintain the status quo, current dividend levels and profit margins rather than embark on the changes needed - if only to buy themselves breathing space to develop new markets for their existing stuff before being strong armed into producing better quality stuff for the rest of in the first world.
The corporate reward structure is very much geared to the here and now - I think only Government/EU money can provide the basis to seed or kick start the kind of massive changes needed and only direct legislation rather than cosy self imposed guidelines would exert pressure sufficient to bear down on the range of industries that does not even acknowledge that a malaise exists let alone that there may be a medicine out there needed to treat it.
There you go then rant over - I'm not quite sure where it came from but there was obviously something that had been bothering the back of my head for a while. I would be most interested to hear any views on the above or even confirmation that someone actually managed to grind through it all the way to the end.
and helloooo there to you - you bunch of special lovers - as you may be able to judge I am now in a position to heartily recommend starting the day on a 10ml shot of morphine - works a treat at blunting the edges of all but the most severe colitis/gastritis gut pangs - so I give a jolly two thumbs up for good old prescription opiates.
As of midnight I was started on nil-by-mouth so it looks like I'll be getting the endoscopy/colonoscopy? - the one that goes down your throat, later today - hopefully this morning. This will give the team a good look at the extent of the GVHD/ulceration that has re-emerged to hopefully inform and direct the next stage of treatment.
All my prescriptions from home have now been duplicated by the pharmacy here so Meds are distributed by the nursing staff rather than me having to use the daily/weekly personal dispenser that I brought in with me. There's been a bit of dosage juggling going on - the principal immuno-suppressant Ciclosporin has been bumped up to 175mg twice a day, the drug treating my oral GVHD mouth ulcers Mycophenalate has been dropped to 150mg twice a day (half of the dose from a few weeks back) and of course there's the lovely 3 hourly painkilling jabs which have given me back a degree of sanity. Speaking of which the rest of this blog entry goes a little off piste as regards MDS, GVHD and my hospital stay. The morphine appears to have made me feel the need to express a view on the obesity epidemic we are brewing in this country and the interlinkedness of loads of other stuff to it.
Later...
Before I let loose with the morphine rant, here's an update on the rest of the day's events for 06/03/2014. I had the CT scan done today and also the endoscope where a camera is passed down through the mouth into the stomach. Having had this procedure a couple of times before, I was expecting to be semi-conscious and to feel a degree of discomfort ie gagging as the tube is fed into you, but the anaesthetist was pretty much bang on as I felt nothing between the time that the facemask was hooked on until I gently came to in the recovery room. Good job and well done to all involved. I was a bit surprised to find that I needed a top up on my platelets before they would go ahead with the endoscopy - the count was down to 26 which is a bit low, but if I'm honest not entirely unexpected given the quantity of different immuno-suppressants I've been prescribed.
Seeing all my boxes of meds piled up made me think of that (health?) show on E4 - Supersize vs Superskinny, where the obese UK dieter is shipped across to the USA to meet someone who is maybe 10 years and most often at least 10 stone heavier than the UK counterpart. There is usually a section of the show where the American participant produces a huge black bin sack of meds and starts laying out the beta blockers, diabetes meds and all the varied pharma designed to keep them alive.
The more I think about the situation in America, the more I come to conclude that although these people assume the majority of the responsibility for the neglect they have inflicted on their bodies and health, there also comes a point at which they have become trapped. A few years ago my tack would have been definitely less empathic and very different, more along the lines of stop whinging so much, then stop eating so much and try changing seats more than once a day you disgusting corpulent disgrace. But once you start to consider the external factors influencing the emergence of a new obese demographic in the US and UK populations it should come as no surprise that as usual it's fuelled by money baby - pure bright shiny toothed corporate greed.
The Fast Food Corps coin the cash initially by ushering people gently into the junk food lifestyle - emphasising the positive elements; good deal or your family/ togetherness/ shared bonding experience / part of a balanced diet because we also pop a bit of salad on top etc. Then the Pharmaceutical and Health Insurance Industries coin it at the other end of the process by selling treatment and drugs that keep the ulcerated, diabetes ridden hulks just alive enough to carry on consuming.
Principal financial beneficiaries of this in the US would be the health insurance and health delivery companies - as I have mentioned in previous blog entries I am more grateful than I can ever truly express that I was born to a country that provides universal healthcare free at point of delivery to its citizens. My inside expert (wife - Pharma Industry Sales and Marketing) tells me that the government in the UK have taken pretty stringent steps to curb the kind of excesses that used to occur in the Pharmaceutical Industry in the 80s and 90s which were apparently 'the good old days' of money making for all involved, but this appears to be far from the case Stateside -I'm guessing that the sheer scale of revenue involved gets the Health Industry lobbyists a seat at the top table along with the banks and defence contractors. Jeannette and I stayed in New York for a week in 2007 and I can still remember my surprise at seeing what in this country would be considered prescription drugs for diabetes, impotence and blood pressure being advertised on the TV - still not sure if its a good or bad thing - mind you I saw an ad for stiffy pills on ITV just the other day...so this country is very much mirroring the US where corporate/governmental congruity permits.
It has been explained to me that contrary to how it sometimes appears from 'scandal' pieces in the UK press, the NHS keeps a pretty tight rein (some would say too tight) on Pharma companies activites and pricing by prohibiting or severely limiting the kinds of inducements that sales forces would have used of old to secure orders. Wining and dining is out of the window as are 'training' days at premier UK events, you know Ascot, Chelsea Flower Show etc - all these things have been firmly left behind in the mid nineties under guidelines issued by the ABPI (Association of British Pharmaceutical Industry), which can limit the % of profit that a company can make over the course of a tender and in some cases get 'cashback' from the companies entering into the contract.
All fair enough and more power to the bright sparks who for once you may say are seeking to ensure that not every government contract needs to end with the tax payer taking another shafting from the predatory private sector. But apparently this sort of thing cuts both ways - now that the accountants and middle managers are in the ascendant in the NHS, drugs and medicine acquisition contracts have taken on similar profiles to other government departments. I can remember a phrase used in tender document packs - something along the lines of 'we do not undertake to accept the lowest or any tendered contract price..' except that they always do and it's invariably the cheapest. People in the know (my wife being one) say the downside of this is that a lot of 'dirty' drugs make it onto the hospital pharmacy shelves for prescription purely due to pricing. By 'dirty' I don't mean toxic as such, its more like if there is the option of two drugs that accomplish almost identical treatment outcomes with one priced lower due to slightly unfavourable side effects and maybe the other is marginally more expensive due to faster action in treating the condition - well I'll let you take a stab in the dark as to which one the quill sucker at NICE is going to plump for and place on the NHS formulary.
Next have to be the food and fast food industries, when I was in the US I wandered round their supermarkets slack jawed at the range of choice and variety on offer - but not necessarily in a good way - Choco-nut slurple berry maple syrup pancakes with pork cop sprinkles. Equally I was shocked at the way that pretty much any food type you can imagine will be mixed with corn syrup or fructose (therefore not labelled as sugar) and then combined with any other number of foods, resulting in avalanches of high carb, high sugar comfort food - the UK is not so far behind here- people unwittingly becoming hooked on stealth sugar in everyday innocuous looking foods. Supermarkets pile the stuff high because it's habit forming and therefore profitable - not because of its health benefits - and yet, - and yet like smoking there is always the element of free will. Big Food Corp is not forcing this stuff into your sausage-like grip and jamming it down your throat - it's you doing that.
The resultant boom is big money with diabetes, high blood pressure and all the associated illnesses (and support services) required to treat the ever increasing bariatric population. Given that diabetes tends to exhibit as a chronic rather than acute illness, the Pharma companies have an enduring bedrock of bread and butter cash flow. The course of inaction on which this country is currently set can only grow the problem - even if the observations were based solely on what I see around me in a small slice of coastal south east England it would be bad enough but when you upscale this from a local population of maybe 200k to a nationwide population of >60m, the numbers start to look very scary and headed only one way unless people in food industry, government, health care and indeed the public at large can be persuaded of the universal benefits of getting food right.
It is pretty much to be accepted that fast, convenient food is a cultural mainstay in this country and as a democracy people have the absolute and individual right to decide what it is that they do or do not put in their faces (unless its a crack-pipe, handgun or maybe a flamethrower) - but what if the choices with which we are presented are tainted from the off? I'm from the generation that remembers freshly prepared and home cooked food as a kid - although I would wolf down crap food just as eagerly as the next kid given the opportunity, but I've also in recent years come to know the satisfaction and enjoyment of preparing home meals from scratch.
This is a model that no longer exists as the norm in millions of households across the UK.
In its overarching bid to provide time poor people with access to quick quality cuisine or to simply sell plain old fashioned junk food to the less well off, Big Food Corps have created a very real fracture in the food chain. Fewer people cook for themselves any more and have therefore abdicated responsibility for the content of their foodstuffs - leaving it to the manufacturers (who just might not always have your best interests at heart) to stand as the arbiters of what goes into your food.
If I choose to produce a reduced sugar or low salt recipe I can tweak the ingredients to suit my taste or dietary needs while prepping it at home. Ready meals now form a major section of market share and take this facility entirely out of the hands of the consumer (unless you want to add more sugar or salt) and I heard a jarring example of this recently...
Again referring to Radio 4 - I was cocking half an ear to a show covering Health Care and Support Services and the impact that cuts are having on small scale local projects across the country. One item featured a health worker in the North West of England talking about a scheme she was having to close which taught mothers the further stages of feeding after their baby is weaned and starting on semi solids.
At this point I think I was probably rolling my eyes theatrically and muttering some distinctly non Radio 4 language about making busy work for interfering arseholes whilst suggesting she make a swift trip to leave a deposit at the 'Bank of the Fucking Obvious'. But what I heard next was a revelation. Firstly, many of the clients attending the clinic were primarily young parents who had coped with the early stages either through the use of breast or formula feeding or a combination of the two. Where they were coming unstuck was in moving up to the next level of nutrition. I suppose the clue is in the age group, what do teenagers like to eat most? yay- nutritional garbage. Before the health worker arrived on the scene and started working with this particular group of parents it had been common practise amongst this peer group for them to liquidise their usual fast food diet in a blender, render it down to a semi solid paste and feed the goop to their babies - not as a rare naughty but nice treat that you might give to a 4 or 5 year old after a trip to the cinema, but as a primary component of a semi-weaned infant's regular diet.
We've all I've seen baby goop and its all the same green or brown slop anyway - right? Wrong. So a meal would consist individually of either a kebab, chicken nuggets, cheese burger or even pizza - rendered to a paste - all of it containing the full unhealthy adult levels of salt, sugar and sat fats. This rocked me back on my heels - where else is it happening? - and what chance in hell do these kids have if the parents have no conception that what they're doing is wrong?
Whilst I don't wish in anyway to draw a comparison between possible addiction to sugar in food and nicotine addiction from smoking, I would however like to suggest the following scenario. What if we are now at a point akin to that reached in the 70s/80s where a ground swell of opinion and medical evidence was finally gaining sufficient head of steam to alert people to the fact that cigarettes weren't actually a jolly good work out for the lungs and that smoking could actually kill you.
In the intervening forty years smoking numbers in this country have decreased from 40% to around 20% of the overall smoke eligible population - even more importantly, the aura and perception around smoking has undergone a retrograde makeover, from being cool, sexy and rebellious to being dirty, anti-social, marginalised and most of all - deadly. The Big Tobacco Companies were never going to go bust, they just rejigged and diversified their money across different businesses and countries, judiciously paid people off when legally cornered and looked further afield for new markets where in turn they have probably bought at least another 40 years or so before these new markets (I'd hazard Africa, India, China) start to come to terms with smoking as a health hazard rather than a wacky hobby and, - thinking along the speed at which things get done in such regions I'd call 40 years fast-tracking.
The scale and speed of change in the first world have been glacial - Big Tobacco has fought (and are still fighting) a stubborn rear guard action which slowed but never halted the campaign to depopularise smoking. The important strand is that change was initiated, refreshed and sustained through consistent year on year pressure and education. Freedom of choice is the same as it ever was, people can decide whether to smoke or not, but now the deck isn't loaded - there is no obfuscation or diversion as it is universally acknowledged by all but the dimmest of 40w thinkers (or lobbyists) that smoking will wreck your health and then it will kill you.
So seeing that the Big Food Corps are as entrenched now as Big Tobacco was then, why shouldn't the battle for healthier food proceed in the same way? - After all the tobacco war is almost at tipping point in Western Europe and the majority of the English speaking world - if the only way is the hard slow way of joining up the dots of many minute victories to eventually secure a medium sized one - well have at it. Any realist will tell you that there is far too much money at stake for there ever to be any meaningful change based on voluntary codes of conduct or self policing strategies introduced by the companies themselves. Nothing will move unless the droves of opposing legal chappies for each side are assembled and troughing it up on their client's behalf for all they're worth.
A UK Minister was recently questioned on Radio 4 about on the subject of guideline proposals issued by the Swedish Government recommending that Sweden's food producers work toward reducing (by about 30%) the amount of sugar (fructose, glucose, corn syrup etc) added to food and encouraging lower carb diets - not silly Atkins type levels, but a bit more sensible than is currently in place. When asked if something like that should be considered for this country (anticipating the looming BMI tsunami) the proposals were instantly dismissed out of hand by this Minister I wish I could remember the bugger's name,- quashed as impossible to implement. Why is this such a monumental task as to be too huge to even consider? It seems to me to be very much in parallel to the tobacco scenario outlined above, so surely (although I imagine not in my lifetime) a series of incremental agreements and laws could be implemented to 'sensibilise' the content of mass produced food.
Although normally I welcome EU interference in our country's laws and policies just about as much as any Island Brit, I am still perfectly able to concede here that an EU ruling or law on this issue would be suitable and fit for purpose - if ever there was a common interest for a common market this has to be it.
I suppose the next question should be 'Why should we wait for so damn long? People are eating themselves to death now - what about the current generation?' The jaded, but I imagine, entirely unblinkered view is that Big Food Corps would much rather spend less money and kill time fighting in the courts to maintain the status quo, current dividend levels and profit margins rather than embark on the changes needed - if only to buy themselves breathing space to develop new markets for their existing stuff before being strong armed into producing better quality stuff for the rest of in the first world.
The corporate reward structure is very much geared to the here and now - I think only Government/EU money can provide the basis to seed or kick start the kind of massive changes needed and only direct legislation rather than cosy self imposed guidelines would exert pressure sufficient to bear down on the range of industries that does not even acknowledge that a malaise exists let alone that there may be a medicine out there needed to treat it.
There you go then rant over - I'm not quite sure where it came from but there was obviously something that had been bothering the back of my head for a while. I would be most interested to hear any views on the above or even confirmation that someone actually managed to grind through it all the way to the end.
Friday, 7 March 2014
T+ 379. Aarghh well this is all looking horrifingly familiar...
Right - so I've been readmitted to Kings College Hospital London as of 04/03/2014 with on-going gut and (now) minor oral GVHD. I've resisted being an in-patient again for as long as possible, but was making everyone at home's life a misery what with being so grouchy and short fused. The out-patient treatment I've been receiving hasn't proven heavy duty enough to hit the GVHD with the coup de grace, so once Jeannette was able to arrange cover for school runs and had a clear stretch of time ahead of her (ie no out of country business stopovers or extensive travelling) we decided that it was time to stop fannying around with one foot in and one foot out of the door and for me to commit to getting back in my body's driving seat (as it were).
I'm back on Waddington Ward in the room immediately adjacent to that in which I spent my chemo/transplant stay just over a year ago - with (I can freely admit now) much more rosy expectations of what was to come. Not only does it not seem like a year has elapsed, but I also find myself occasionally and irrationally asking 'what has the past year been for?' The only workable rationalisation I can come up with is that it has happened and it's done - that's all that can really be said without getting maudlin - which is deffo not the right frame of mind for the current set of circumstances.
05/03/2014
I have a new buddy since I checked in yesterday - it's called IV Buscopan it gets jacked straight into the catheter on the back of my hand and so far has worked for gut and GI pain. It seems to be very much associated with the passage of food and/or waste through the digestive tract and previously the only way I'd found to avoid the pain was to avoid food - not the sensible option if you're looking to provide the body with the resources to heal. So the deal now is that I get a shot 30-40 minutes before mealtime which (so far) has helped greatly.
The staff here have already taken blood, urine and stool samples, with further tests to be done later for nutrients absorption and I think there's also an endoscopy, bone marrow biopsy and CT scan on the cards which will be nice. I've bravely decided on the full English for brekkers today and it's just arrived so I'm about to find out how much of a good buddy the Buscopan is going to be.
Later...
Well that turned out not be such a great success as whatever was working before to stop the pain packed up pretty soon and breakfast was just plain nasty. Unpalatable school dinner sausage - not a curly cumberland one as described, crusty baked beans, greasy luminous yellow hash browns and fishy powdered egg omelette it's almost as if it is served up as a bet to see which patients are desperate or separated from reality enough to go for it. I know that chemo therapy can strip away your taste buds and a year ago, when I had a tongue resembling a radial tyre with about 2 taste buds left, I might have even been able to eat it - blindfolded. It actually beggars belief that a fellow human being could be given the budget, foodstuffs and facilities to cook, yet still come up with something so manifestly vile, if this were a cafeteria I very much doubt that the creator of this crap would be able to look you square in the eye whilst serving it to you. It's back to coffee and croissant for me tomorrow.
I had a visit from my consultant Victoria and her colleague Clare late morning today, they got straight on the ball once I'd described the level of discomfort I was experiencing and prescribed a sub cut morphine jab which has been a revelation leaving me pain free all day for the first time in ages - it's currently being dosed every 2-3 hours for which I am grovelingly grateful - I would expect that the dosage will be titrated down as the other measures kick in and am trying to leave as long as possible between jabs.
I had a chat with a counsellor called Phil earlier today and was actually surprised at how much I had to say. The gist is that I've fully accepted my situation and have no false expectations of a miracle happening any time soon. I mentally refer to it as being 'entrenched' - but not in a negative way, it's just a state of being that has to be temporarily tolerated until the day comes that I don't have to tolerate it any longer - at which point I can emerge from 'treading water' mode ready for the next phase of life proper. So this time out is for some heads down, no nonsense, no visitors all out blitz on what remains of the overactive GVHD causing stem cells that don't yet realise their time has passed and that they decently should turn their toes up sharpish and exit stage left - not unlike the Lib Dem element of the government alliance really...
All the little old rituals have to be observed again, measuring and recording fluid intake and output, two hourly BP checks, temperature and O2 saturation observations, wearing DVT stockings and trying to remember not to cross my legs when laying on the bed. I think I must have been a little dehydrated on arrival as I've had 2 bags (litres) of saline since I came in as well as a bag of magnesium - and that's discounting oral intake which isn't far off two litres today.
I'm back on Waddington Ward in the room immediately adjacent to that in which I spent my chemo/transplant stay just over a year ago - with (I can freely admit now) much more rosy expectations of what was to come. Not only does it not seem like a year has elapsed, but I also find myself occasionally and irrationally asking 'what has the past year been for?' The only workable rationalisation I can come up with is that it has happened and it's done - that's all that can really be said without getting maudlin - which is deffo not the right frame of mind for the current set of circumstances.
05/03/2014
I have a new buddy since I checked in yesterday - it's called IV Buscopan it gets jacked straight into the catheter on the back of my hand and so far has worked for gut and GI pain. It seems to be very much associated with the passage of food and/or waste through the digestive tract and previously the only way I'd found to avoid the pain was to avoid food - not the sensible option if you're looking to provide the body with the resources to heal. So the deal now is that I get a shot 30-40 minutes before mealtime which (so far) has helped greatly.
The staff here have already taken blood, urine and stool samples, with further tests to be done later for nutrients absorption and I think there's also an endoscopy, bone marrow biopsy and CT scan on the cards which will be nice. I've bravely decided on the full English for brekkers today and it's just arrived so I'm about to find out how much of a good buddy the Buscopan is going to be.
Later...
Well that turned out not be such a great success as whatever was working before to stop the pain packed up pretty soon and breakfast was just plain nasty. Unpalatable school dinner sausage - not a curly cumberland one as described, crusty baked beans, greasy luminous yellow hash browns and fishy powdered egg omelette it's almost as if it is served up as a bet to see which patients are desperate or separated from reality enough to go for it. I know that chemo therapy can strip away your taste buds and a year ago, when I had a tongue resembling a radial tyre with about 2 taste buds left, I might have even been able to eat it - blindfolded. It actually beggars belief that a fellow human being could be given the budget, foodstuffs and facilities to cook, yet still come up with something so manifestly vile, if this were a cafeteria I very much doubt that the creator of this crap would be able to look you square in the eye whilst serving it to you. It's back to coffee and croissant for me tomorrow.
I had a visit from my consultant Victoria and her colleague Clare late morning today, they got straight on the ball once I'd described the level of discomfort I was experiencing and prescribed a sub cut morphine jab which has been a revelation leaving me pain free all day for the first time in ages - it's currently being dosed every 2-3 hours for which I am grovelingly grateful - I would expect that the dosage will be titrated down as the other measures kick in and am trying to leave as long as possible between jabs.
I had a chat with a counsellor called Phil earlier today and was actually surprised at how much I had to say. The gist is that I've fully accepted my situation and have no false expectations of a miracle happening any time soon. I mentally refer to it as being 'entrenched' - but not in a negative way, it's just a state of being that has to be temporarily tolerated until the day comes that I don't have to tolerate it any longer - at which point I can emerge from 'treading water' mode ready for the next phase of life proper. So this time out is for some heads down, no nonsense, no visitors all out blitz on what remains of the overactive GVHD causing stem cells that don't yet realise their time has passed and that they decently should turn their toes up sharpish and exit stage left - not unlike the Lib Dem element of the government alliance really...
All the little old rituals have to be observed again, measuring and recording fluid intake and output, two hourly BP checks, temperature and O2 saturation observations, wearing DVT stockings and trying to remember not to cross my legs when laying on the bed. I think I must have been a little dehydrated on arrival as I've had 2 bags (litres) of saline since I came in as well as a bag of magnesium - and that's discounting oral intake which isn't far off two litres today.
Saturday, 22 February 2014
T + 367. Well that was quick...
Here we are then a year a two days after I received the little bag of stem cells at Kings College Hospital.
In an ideal world I would have expected to be much further along the road to recovery than this but this year really has been a case of three steps forward two steps back and a series of different bouts of secondary illness and infections have put the kybosh on long term recuperation. But as I keep on reminding myself (and people around me) the headline news is great. I have 100% chimerism which means that none of my original diseased bone marrow survived the chemo and that all the new stuff has grown from the stem cell transplant - this is as close to full remission as it's possible to get and means barring life taking a revenge dump on me, that I should have a least another 25 years.
The sort of silly crap I've had going on for the past year is principally down to various different types of GVHD (Graft versus host disease) which is the stem cell graft being not quite fully comfortable in it's new environment - even though it comprises all of my bone marrow. It has manifested itself in a couple of different ways the first was huge and very persistent mouth ulcers which made eating very tricky, fingers crossed I'm just about over the worst of those now.
The second was (is) GVHD of the GI tract which started as intestinal ulcers, gut cramps and colitis with the obvious knock on effects of both loss of appetite and the raging trots - this has meant that I have struggled to stay above 9st 4lbs for most of the year. So there would be a period when one or other of these symptoms would relieve and I was able to start packing food in to gain weight only for it to drop away a couple of weeks later due to a relapse. The drugs used to treat GVHD are immuno-supressants which impact on blood content and (as the name suggests) supress the immune system to try and wipe out the GVHD reaction. An obvious result of this is that the individual's immune system is supressed in relation to any other disease or infection that rocks up at the scene, so coughs, colds and all the little delights that Milo brings home from nursery or pre-school are pretty much guaranteed head space.
Now anyone who knows me will be aware that I am (or was) surprisingly vain - given how little I had to be vain about. But a year of chemo, recovery and meds have pretty much screwed me over. As I said I've lost 3 to 3.5 stone and weigh about 9st and a bit with little skinny chicken legs and virtually no lean muscle anywhere on my body, the steroids I'm taking are making me both moon faced and spotty and lack of sleep means I pretty much have permanent big bags under my eyes - however such is the extent of personal delusion that I still can't pass a mirror without checking my bad self out.
I've done just under a quarter of the light therapy (photopheresis) sessions that I'm due to have and according to the nurses at Guys the next three or so sessions will be when the results start kicking in so I imagine there may be a very gradual reduction in my meds levels as the docs attempt to establish what the minimum levels to support my condition will be - I'm very much hoping it to be zilch. Some of my fellow GVHD sufferers at Guys really do have it way worse though, their skin looks like its been sand blasted and they are permanently swathed from head to foot in scarves, masks and gloves to protect their skin and ravaged immune systems from potentially lethal conditions that 99.99% of the rest of humanity isn't even aware.
The fact that I'm writing again signifies to me that I am coming out of another crappy period and am anticipating that things will improve.
In an ideal world I would have expected to be much further along the road to recovery than this but this year really has been a case of three steps forward two steps back and a series of different bouts of secondary illness and infections have put the kybosh on long term recuperation. But as I keep on reminding myself (and people around me) the headline news is great. I have 100% chimerism which means that none of my original diseased bone marrow survived the chemo and that all the new stuff has grown from the stem cell transplant - this is as close to full remission as it's possible to get and means barring life taking a revenge dump on me, that I should have a least another 25 years.
The sort of silly crap I've had going on for the past year is principally down to various different types of GVHD (Graft versus host disease) which is the stem cell graft being not quite fully comfortable in it's new environment - even though it comprises all of my bone marrow. It has manifested itself in a couple of different ways the first was huge and very persistent mouth ulcers which made eating very tricky, fingers crossed I'm just about over the worst of those now.
The second was (is) GVHD of the GI tract which started as intestinal ulcers, gut cramps and colitis with the obvious knock on effects of both loss of appetite and the raging trots - this has meant that I have struggled to stay above 9st 4lbs for most of the year. So there would be a period when one or other of these symptoms would relieve and I was able to start packing food in to gain weight only for it to drop away a couple of weeks later due to a relapse. The drugs used to treat GVHD are immuno-supressants which impact on blood content and (as the name suggests) supress the immune system to try and wipe out the GVHD reaction. An obvious result of this is that the individual's immune system is supressed in relation to any other disease or infection that rocks up at the scene, so coughs, colds and all the little delights that Milo brings home from nursery or pre-school are pretty much guaranteed head space.
Now anyone who knows me will be aware that I am (or was) surprisingly vain - given how little I had to be vain about. But a year of chemo, recovery and meds have pretty much screwed me over. As I said I've lost 3 to 3.5 stone and weigh about 9st and a bit with little skinny chicken legs and virtually no lean muscle anywhere on my body, the steroids I'm taking are making me both moon faced and spotty and lack of sleep means I pretty much have permanent big bags under my eyes - however such is the extent of personal delusion that I still can't pass a mirror without checking my bad self out.
I've done just under a quarter of the light therapy (photopheresis) sessions that I'm due to have and according to the nurses at Guys the next three or so sessions will be when the results start kicking in so I imagine there may be a very gradual reduction in my meds levels as the docs attempt to establish what the minimum levels to support my condition will be - I'm very much hoping it to be zilch. Some of my fellow GVHD sufferers at Guys really do have it way worse though, their skin looks like its been sand blasted and they are permanently swathed from head to foot in scarves, masks and gloves to protect their skin and ravaged immune systems from potentially lethal conditions that 99.99% of the rest of humanity isn't even aware.
The fact that I'm writing again signifies to me that I am coming out of another crappy period and am anticipating that things will improve.
Thursday, 12 December 2013
T + 295. Time to get my blood nuked.
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.
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.
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