I am being punished for being right wing and Middle Class. It was bound to happen at some point, and today it finally did. Not only have the Tory's been forced to dilute their sensible tax cut provisions and "schools revolution" with wooly, half-baked Lib Dem policy, now The Times has turned against me too.
Sunday is often my favourite day of the week. If I am not hungover from the previous night's drinking, or swollen to the size of a mud hut - from the previous night's drinking - I like nothing better than to go out for breakfast with Maisy, maybe go for a run and then settle down on the sofa and work my way through the papers. On Saturday, it is always The Guardian. I tell people I read The Guardian in spite of my aforementioned right-ish tendencies because I like to get a balanced overview of the news. The real reason is that I really like The Guardian magazine. As The Guardian is not published on Sunday (bloody Socialists, no work ethic) it is always The Times of a Sunday. Both my parents are life-long Telegraph readers, so I feel I am being particularly subversive with my purchase. This must be how Che Guvara felt.
Usually, I spend a pleasurable hour or so chuckling at Mrs Mills and flicking through the News Review; today, however, I ended up in tears wondering whether I would be dead in two and a half years time. The magazine featured as it's cover story an article about Great Ormond Street, the premise being that amidst the heart-wrenching sorrow of a children's hospital that is perceived by many to be a final resort, it is actually a place filled with much joy and laughter. What it failed to mention was that the majority of the article was set in the renal ward and was primarily an exposition on how children live with and manage end stage kidney disease and the ensuing transplantation. All the pictures were either of teenagers fiddling with laptops whilst dialysing or young children post transplant, their cheeks chubby from the high doses of steroids in their system.
It made for pretty grim reading, especially the quote from the unit's clinical lead, one Dr Lesley Rees, who informs us that: "If you're an adult on heamodialysis, your chances of surviving five years are less than if you have breast or colon cancer." She goes on to point out that really the mandated 12 hours of dialysis isn't enough; 18 hours would be far more beneficial because: "[Dialysis] doesn't restore you to normality. It just keeps you alive." Yikes. So, in summary: I'm only even here because a machine keeps me going but that doesn't really matter anyway because there's a significant chance I'll be dead in two and a half years. Better get that trip to Disney Land planned pronto, she mused, as she emptied out her ISA account and headed to Topshop.
Nothing else in the piece came as a terrific shock: the immunosuppressant drugs increase your risk of dveloping cancer; transplanted kidneys only last a decade on average; the waiting time on the list can be anything from a year to six; the fluid restriction is one of the toughest elements of the disease as is, equally, the requirement to suddenly have to drink gallons post-transplant. Yet seeing images of young people hooked up to haemodialysis machines whilst I'm eating cheap nougat on the sofa on a Sunday afternoon is a little too much like looking in a mirror, albiet one of the crazy, distorting, fun-fair variety. Dialysis is not my life today: I have a carefully regimented system of denial to maintain and whilst it will be my life again tomorrow afternoon, I don't want it in my front room today. The article made kidney failure out to be a catastrophic illness that leaves destruction and sometimes death in it's wake and whilst this is true to an extent, and it is important to convey the severity of a condition that is extensively under-exposed and misunderstood, there is nothing like being able to identify too intensely with what you are reading to make you want to stop. I had to get up and blow my nose anyway.
Perhaps most upsetting of all was the revelation that young dialysis patients at Great Ormond Street benefit from the services a play therapist called Jane Aston. She does things like making pink sparkly models of kidneys to help her patients understand what is happening to their bodies and oversees birthday celebrations that involve cake and choruses of Happy Birthday from the nurses. Two years ago my birthday fell on a dialysis day: my fistula blew and all I got was a rubber glove filled with ice to try and make the swelling go down before we put the needles in again. Aston is quoted as saying: "I'm trying to normalise the hospital experience, make it so happy that when the time comes they don't want to go home." Ms Aston must be exceptional at her job, because short of Dermot O'Leary removing his clothes and mounting me as my session comes to an end, the end of my four hours usually sees a Rosy-shaped hole in the wall.
If I sound bitter, just as well, because I am. Where's my play specialist?! Where's my glittery pick cardboard cut-out of a kidney?! They get cake and board games and I get some Digestives at 4:30 and generally just get board. Apparently Wedneday is "teenagers day" on the dialysis ward at GOSH and "the place is buzzing, not with scary machinery but with teenage chat and cheekiness." Sign me up for that! I would love to have cheek and banter at dialysis! As it is, I am stuck with the truly obnoxious sounds of Sir Spits-a-lot coughing and hocking up phlegm into the vomit bowl he insists on keeping by his bed; I am too old for the teenagers unit (although apparently I look like a twelve year old) but too young to be part of the Here-but-for-the-grace-of-God Squad I currently dialyse with. I'm hoping these are the adults Dr Rees was referring to in her five year life expectancy prediction and with any luck, a handful will snuff it in the next few months and I can move up a couple of rungs on the waiting list. If I'm lucky, maybe Really Loud Snoring Guy will go first and I won't have to spend my sessions with The Corner blaring out of the headphones I have jammed into my ears.
Worryingly, the article featured a side bar interview with a sixteen year old haemo patient named Adam who: "looks far too healthy to be anywhere but on a ski slope or a surfing beach." The accompanying picture definitely confirms it; fuck, I'm just going to say it: he is FIT, all blonde hair and sturdy shoulders (it's difficult to fully appreciate a guy's physique when they're dialysing). Now, I know what you're thinking: he's sixteen, I'm twenty-three, it's all a bit sick and wrong and Sam Taylor-Wood-esque. But he's go-getting and sporty: he skis and captains a cricket team and, heroically, represented Great Britain in the World Transplant Games (a particular obsession of mine) for which he went to Thailand and won a clutch of Gold medals (and if I had known there was a free trip to Thailand involved, I wouldn't have been so derisive about the bloody thing). However, he is also irritatingly resilient and pragmatic about his kidney failure, saying that it is "just a blip" and adding with a smile: "My illness has given me the chance to do amazing things I would never have done if I'd been well". Ok, so he's a bit too pious for my cynical tastes, but park me in front of young Adam at the start of each session and finally I'll agree with Jane Aston and never want to leave.
It was a shock to come across such an article and made for uncomfortable reading. However, seeing as there are only about 8,000 people on the waiting list in this country, The Times should probably not be expected to cater it's editorial around such a small percentage of the population. The truth is, this disease is scary and dotted with many pitfalls; however, to survive it, to live with it with it day in, day out, for the rest of my life, I have to ignore them if I want to stay sane. Articles such as this one simply highlight the potential effects of my condition; I just have to hope I will carry on having as smooth a ride as I have been lucky enough to have enjoyed so far. Next week, however, I think I will play it safe and maybe just go for The Observor instead.
Sunday is often my favourite day of the week. If I am not hungover from the previous night's drinking, or swollen to the size of a mud hut - from the previous night's drinking - I like nothing better than to go out for breakfast with Maisy, maybe go for a run and then settle down on the sofa and work my way through the papers. On Saturday, it is always The Guardian. I tell people I read The Guardian in spite of my aforementioned right-ish tendencies because I like to get a balanced overview of the news. The real reason is that I really like The Guardian magazine. As The Guardian is not published on Sunday (bloody Socialists, no work ethic) it is always The Times of a Sunday. Both my parents are life-long Telegraph readers, so I feel I am being particularly subversive with my purchase. This must be how Che Guvara felt.
Usually, I spend a pleasurable hour or so chuckling at Mrs Mills and flicking through the News Review; today, however, I ended up in tears wondering whether I would be dead in two and a half years time. The magazine featured as it's cover story an article about Great Ormond Street, the premise being that amidst the heart-wrenching sorrow of a children's hospital that is perceived by many to be a final resort, it is actually a place filled with much joy and laughter. What it failed to mention was that the majority of the article was set in the renal ward and was primarily an exposition on how children live with and manage end stage kidney disease and the ensuing transplantation. All the pictures were either of teenagers fiddling with laptops whilst dialysing or young children post transplant, their cheeks chubby from the high doses of steroids in their system.
It made for pretty grim reading, especially the quote from the unit's clinical lead, one Dr Lesley Rees, who informs us that: "If you're an adult on heamodialysis, your chances of surviving five years are less than if you have breast or colon cancer." She goes on to point out that really the mandated 12 hours of dialysis isn't enough; 18 hours would be far more beneficial because: "[Dialysis] doesn't restore you to normality. It just keeps you alive." Yikes. So, in summary: I'm only even here because a machine keeps me going but that doesn't really matter anyway because there's a significant chance I'll be dead in two and a half years. Better get that trip to Disney Land planned pronto, she mused, as she emptied out her ISA account and headed to Topshop.
Nothing else in the piece came as a terrific shock: the immunosuppressant drugs increase your risk of dveloping cancer; transplanted kidneys only last a decade on average; the waiting time on the list can be anything from a year to six; the fluid restriction is one of the toughest elements of the disease as is, equally, the requirement to suddenly have to drink gallons post-transplant. Yet seeing images of young people hooked up to haemodialysis machines whilst I'm eating cheap nougat on the sofa on a Sunday afternoon is a little too much like looking in a mirror, albiet one of the crazy, distorting, fun-fair variety. Dialysis is not my life today: I have a carefully regimented system of denial to maintain and whilst it will be my life again tomorrow afternoon, I don't want it in my front room today. The article made kidney failure out to be a catastrophic illness that leaves destruction and sometimes death in it's wake and whilst this is true to an extent, and it is important to convey the severity of a condition that is extensively under-exposed and misunderstood, there is nothing like being able to identify too intensely with what you are reading to make you want to stop. I had to get up and blow my nose anyway.
Perhaps most upsetting of all was the revelation that young dialysis patients at Great Ormond Street benefit from the services a play therapist called Jane Aston. She does things like making pink sparkly models of kidneys to help her patients understand what is happening to their bodies and oversees birthday celebrations that involve cake and choruses of Happy Birthday from the nurses. Two years ago my birthday fell on a dialysis day: my fistula blew and all I got was a rubber glove filled with ice to try and make the swelling go down before we put the needles in again. Aston is quoted as saying: "I'm trying to normalise the hospital experience, make it so happy that when the time comes they don't want to go home." Ms Aston must be exceptional at her job, because short of Dermot O'Leary removing his clothes and mounting me as my session comes to an end, the end of my four hours usually sees a Rosy-shaped hole in the wall.
If I sound bitter, just as well, because I am. Where's my play specialist?! Where's my glittery pick cardboard cut-out of a kidney?! They get cake and board games and I get some Digestives at 4:30 and generally just get board. Apparently Wedneday is "teenagers day" on the dialysis ward at GOSH and "the place is buzzing, not with scary machinery but with teenage chat and cheekiness." Sign me up for that! I would love to have cheek and banter at dialysis! As it is, I am stuck with the truly obnoxious sounds of Sir Spits-a-lot coughing and hocking up phlegm into the vomit bowl he insists on keeping by his bed; I am too old for the teenagers unit (although apparently I look like a twelve year old) but too young to be part of the Here-but-for-the-grace-of-God Squad I currently dialyse with. I'm hoping these are the adults Dr Rees was referring to in her five year life expectancy prediction and with any luck, a handful will snuff it in the next few months and I can move up a couple of rungs on the waiting list. If I'm lucky, maybe Really Loud Snoring Guy will go first and I won't have to spend my sessions with The Corner blaring out of the headphones I have jammed into my ears.
Worryingly, the article featured a side bar interview with a sixteen year old haemo patient named Adam who: "looks far too healthy to be anywhere but on a ski slope or a surfing beach." The accompanying picture definitely confirms it; fuck, I'm just going to say it: he is FIT, all blonde hair and sturdy shoulders (it's difficult to fully appreciate a guy's physique when they're dialysing). Now, I know what you're thinking: he's sixteen, I'm twenty-three, it's all a bit sick and wrong and Sam Taylor-Wood-esque. But he's go-getting and sporty: he skis and captains a cricket team and, heroically, represented Great Britain in the World Transplant Games (a particular obsession of mine) for which he went to Thailand and won a clutch of Gold medals (and if I had known there was a free trip to Thailand involved, I wouldn't have been so derisive about the bloody thing). However, he is also irritatingly resilient and pragmatic about his kidney failure, saying that it is "just a blip" and adding with a smile: "My illness has given me the chance to do amazing things I would never have done if I'd been well". Ok, so he's a bit too pious for my cynical tastes, but park me in front of young Adam at the start of each session and finally I'll agree with Jane Aston and never want to leave.
It was a shock to come across such an article and made for uncomfortable reading. However, seeing as there are only about 8,000 people on the waiting list in this country, The Times should probably not be expected to cater it's editorial around such a small percentage of the population. The truth is, this disease is scary and dotted with many pitfalls; however, to survive it, to live with it with it day in, day out, for the rest of my life, I have to ignore them if I want to stay sane. Articles such as this one simply highlight the potential effects of my condition; I just have to hope I will carry on having as smooth a ride as I have been lucky enough to have enjoyed so far. Next week, however, I think I will play it safe and maybe just go for The Observor instead.
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