Dave's blog

It’s been a couple of weeks since I last posted and life, it seems, has got just as busy as it ever was, if not more so.  I seem to be taking it in my stride a bit more now though, I’m not staying up for the sake of it and, lack of salt in my diet has cut out almost everything that’s bad for me.  I’m now getting up at 6am as I’m unable to sleep in.  I’m eating nothing but fresh fruit, vegetables, nuts, seeds and rice cakes along with a healthy amount of carbs (Yes carbs are good for you, don’t believe the hype! we were healthiest as a nation in the UK when we ate a lot more potatoes, they are not fattening, think what you would eat instead??!!!). – Nutritionist cap comes off.

So what am I doing at 6am in the morning, well now I’m not teaching for the ‘holidays’, no  its mainly book promotion, catching up on emails, article writing, blogging, tweeting -  life as a modern writer eh?

I mean did John Claudious Loudon, founder of Gardener’s magazine and writer of the first Encyclopaedia of Gardening, tweet when he finished his first draft – I doubt it.  Are we going to lose whole swaths of text because the writers put it up on Facebook instead of in a manuscript?

What happens if a magnetic pulse wipes out all digital media, everything gone, millions of man hours of work wiped out. This here only exists in digital form, a series of 1’s and 0’s.  Although I can’t see my book being put alongside the likes of George Orwell and Oscar Wilde (or even John Loudon for that matter) I’m glad I have something in print, something that will last.

On that subject the book gets printed today!!!!!  I’m debating if I should go along and see it being done but with no car it’s at least 2 hours each way. A four hour round trip would cut into my day quite a lot. I’m still trying to wrap up a college course, I’ve got loads of assignments to do for it. I fell behind writing the book and now I’m even further behind, still I’ve got today and tomorrow to catch up – WHAT AM I DOING WRITING THIS THEN!!?

Okay, before I get round to doing that I should mention the Bristol Garden Life Show have me on the panel of a Gardener’s Question Time event in the Gallery’s Shopping Centre on Saturday and Sunday. There are 4 ‘shows’ altogether at 12 and 3pm each day. I’m sort of looking forward to it but bricking it too.  It doesn’t matter how long you have been in a subject there is always someone more qualified there, this is no exception, my old boss from the Botanic Gardens (I wasn’t there that long and only as a volunteer) is also on the panel.  He buys plants from all over the world for a top academic botanic garden, I’ve kept allotments for 10 years and write for gardening magazines – I mean he’s completely out of my league! When I used to see him at the gardens I was always massively intimidated, he has that air of someone who knows a lot.  I think I’ll leave any questions about Proteas or South African plants to him!

Okay, strange how that kind of thing keeps happening, just had a call from Steve at the allotments office in Bristol who’s organising the event, he’s put my mind right at ease. He gave examples of questions and it’s no different than my students ask me, I always have an answer even if it means asking them a lot of questions first.

It might be quite fun, I will just have to know when to shut up and let someone else speak.

So life continues.  I’ve been up and down this week. On Thursday and Friday I got quite down as I felt like I really was what I am, quite an unwell man. I filled a wheelbarrow up with compost at work and had to sit down to catch my breath. I’m used to doing a lot more than that, when I was working as a gardener full time I could gravel a front garden in a day, filling barrows up from 8am to 4pm.  On my allotment I would move 12 wheelbarrows of muck in an afternoon, uphill whilst smoking.   I’ve long since quit smoking but the illness is making me as weak as a 60 a day man. I’m building my strength up and, each day I can do more but it is slow.

The doctors were another kick in the teeth on Friday as I can’t get an appointment before some of my medication runs out. My hospital meds and GP ones don’t match so the nurse can’t give me a repeat prescription. So next week I have to miss college or teaching to get an appointment just so I can get a bit of paper signed.  It would be easy if I could just jump in a car and drive there but I have to take the train or get a bus and there aren’t too many of those a day.

At work food has been a bit of an issue – thankfully I’ve had Julia (author of Gaia’s Kitchen) who, along with Sarah one of the other cooks, have gone out of their way to be helpful.

Had a nice moment with my boss as she pointed out a snake’s head fritillary growing through the cracks of the paving in the herb garden.  We shared stories of finding the plant in the wild. I once dragged Andy through boggy field in Oxford to find them in Iffly meadows around this time of year.  I think it could have even been when we were doing the Oxford literary festival. Such a beautiful flower with it’s unreal chequered flower head.

Food at home has had a bit of a breakthrough as I’ve discovered liquid aminos, a low sodium soy sauce with just 160mg of sodium per ½ teaspoon. It’s bloody delicious.

So back to work for full hours next week – writing and college work today and Monday, college Tuesday and Wednesday morning then teaching Wednesday afternoon all day Thursday and Friday.  I at least get to have breaks and I can teach whilst sitting in a wheelbarrow if I get tired – I prefer to be ‘hands on’ but I don’t think anyone minds me not lifting a spade at the moment.  Bloody diuretics mean I have to nip behind a hedge every five minutes but I’d rather that than a kidney transplant!

What a month it has been! I’m tentatively back to work now and things are slowly getting back to normal.   I’ve just been writing up my invoice for the month and can’t quite believe how little time I’ve had off.  Considering I was in hospital for three days and, for a couple of weeks, I could barely walk more than a few hundred meters without getting tired, I’ve not really had much time away from work.

Everyone around me has been great and I can honestly say I am in the best place on earth to be ill. The amount of help that has been offered has been unbelievable, I’ve had friends visiting all the time and those who haven’t been in the area have called me up or sent me messages.

The steroids (prednisolone) are a bit shit to be on if I’m honest. It’s hard to describe but I just don’t feel myself. I’m keeping a positive outlook as the alternative is just despair.  They could be worse, I just occasionally feel light-headed and I’m finding it hard to sleep at night.  Although having said that the insomnia is getting less and less pronounced as the time goes by.  The warfarin is a drag as it means I’m not allowed to do a lot of things for the risk of bleeding to death. I have grown a bit of a beard to avoid too much shaving and I’m not riding my bike anywhere just yet.  I have to get my levels checked twice a week which means getting into town and hanging around for the bus home. This has been okay as it means I get to hang out in cafes and catch up with friends but it does mean I’m spending money rather than earning it.

We’ve sorted out our home situation and it looks like we’re moving to somewhere much better. It’s a cottage with an orchard and veg patch and log burning fire.  It looks (and sounds) like it will get cold in the winter so I think we’ll see about insulation and doing what we can to make it warmer.  Our current landlady is still being pretty useless, we’ve now had no bathroom light for months, we asked her to fix it and she suggested coming round with a lamp, A LAMP IN THE BATHROOM!!??  She has no sense of urgency, surely she wants to sell? Who’s going to want to buy somewhere that looks like it has electrical problems before they move in!!??  We’ve had an electrician round to look and now we just wait to see if they can spare a few pounds from their millions to pull some wires out and put them back in. It must be hard for them, what with the tennis courts to resurface and the Bentley to polish.

The next step of the illness will be changing my meds. I can’t wait to get off the diuretic tablets, I need to pee around every half hour at the moment and about three or four times in the night. The pred will get lowered at some point which may or may not give me problems.  I’ll cross that bridge when I find it.

For now it’s a really nice feeling return back to health. Each day I’m able to do more and more.  The other day I crossed the ford in the river near my house. I waded across the 20 meter, up to knee depth water to get from my village to the estate and as I got to the other side I just laughed out-loud to myself.  It was such a rush, Ellie and I had been looking at that crossing all winter and really looking forward to crossing in the spring. It felt like a real mark in my return to health and I just filled with joy (no doubt in part due to some euphoric effect of the pred).

After a real hellish start this month has certainly looked up, I’ve never had a time like this before and hopefully my life will be somewhat boring from now on!

23/03/11

Right, I’m sure this is getting a bit boring for anyone who was looking for a gardening blog but, for the time being, I’m afraid writing this is helping me so you’re going to have to deal with it!  I had thought that I might split this blog in two, one Minimal Change Related and the other back to bits of comedy and idle thoughts, that way my Mum could read one and Newton Abbott woman with all the cats (see Fat Feet posted 5^th March) could read the other.

Anyway, for now I have one blog so, to begin with I was wrong about the meds coming down, I’m still on 60mg of prednisolone, I will be for at least a month. I’ve been looking up the side effects and I seem to be very lucky, some people are really struck down by the drug.  The worst thing I seem to get is insomnia but I’m used to that anyway. I do feel like I am taking something, I feel different but it’s not necessarily bad.  If anything it is making me feel quite positive.  I could do without the emotional side of things, I feel a bit weepy at times, not sad but I did have a little cry whilst watching Miss Potter, the film about the life of Beatrix Potter.  I’m not usually that kind of person, I can be sentimental yes, but not THAT sentimental.

The other side effect is my voice seems to have changed, it gets quite croaky and soft, getting worse by the evening.  I looked it up and about 0.17% of people on Pred (I’m in with the Nephrology lingo now)  can suffer from dysphonia (or altered voice) as a side effect.   So let’s put this into perspective, 2 to 7 children in every 100000 get minimal change and 10-15% of cases are adults so that works out at 1 in 500000 or 1 in half a million.  So if I’ve worked this out right, which I might not of done, one in 850 000 000 or one in every 85 million (or is it 850 million?) get MCN/MCD and dysphonia.  That means there is a good chance I’m the only person ever to have had these symptoms as an adult in the UK – if not I’d love to hear from you (if nothing more than to prove both the stats and/or my maths are way out).

Now I could think ‘why me?’ in a bad way but, instead the scientist in me thinks it’s absolutely fascinating and now the question ‘why me?’ takes on a whole new scope.  MCD is by and large idiopathic, meaning they have no idea what causes it.  In simple terms my immune system back fired and started to turn on my kidneys rather than the causative agent (if that’s the right word?) – possibly a virus or bacteria.  Now what that agent was is a mystery, it could be the cold I had at Christmas or it could even be as a result of me keeping bees.  I did wear my bee suit not long before all this happened – I dressed up in it to cheer Ellie up doing a ‘What are you doing Dave?’ sketch from 2001 Space Odyssey.  She didn’t really laugh that much so I guess it wasn’t worth it.   Now, bee venom is known to hang around for a while so although I wasn’t stung recently the suit would still hold traces of it.  It could be that the bee venom was the trigger for my immune system to backfire and start attacking itself.

I don’t want this to put anyone off bee-keeping, it is very, very, rare to get MCD and even rarer for it to be caused by bees, you actually have more chance of winning the lottery AND being struck by lightning.  However, for me I think it has put me off looking after bees for good. The nephrologist I spoke with yesterday said it could be a precaution to stop bee-keeping, I can’t help thinking he’s right.  It’s funny I got a fairly abusive message from a vegan about bee-keeping.  I thought it was a shame she felt that way as not only am I long term vegetarian and occasional vegan but the methods I practice (sorry, practiced now) aren’t for honey production but for the welfare of the bees. We only had a small amount of honey each last year, about two jars each for 15 people from 5 hives.  The rest we left for the bees as their food for the winter.  Without beekeepers there would be no honey bees, without honey bees there would be no food. My conscience is clear for the bee keeping but I am aware that others may not see it that way. A rather superstitious side of me occasionally thinks I may have been hexed by an angry vegan (if you’re reading this, it worked, can you reverse the hex please!).  Still, I know that has no basis in rationality and I try to think this isn’t from someone else’s ill will.

It really makes you think how random the pattern of life is, if I follow the chain of events back this all started back in June 2009 in a country lane in the Cotswolds (I think I may lose a few people at this point, but thanks for reading so much so far and for the rest of you still reading bear with me this does make sense eventually).

So, it all started when Ellie and I foraged a bumper crop of cherries (I blogged about it at the time http://dave.selfsufficientish.com/blogs/2009/07/living-for-free/) that led us to the idea that there was real abundance without the need for money. From this we decided to see if we could live without cash for as long as we could, without having to change our lifestyle too drastically.

We did pay rent, bills and travel but everything from food and clothes to entertainment and books we had to find without dipping into our wallets.  The experiment lasted six weeks and although I was living in Bristol at the time it ended in Totnes bookshop when I bought a copy of Phil Chandlers the Barefoot Beekeeper.  I though the book had to hold some significance as it marked the first purchase I made in over six weeks.

That September I enrolled on a Sustainable Horticulture course being run at Schumacher College by Cornwall’s Duchy College (the same course I now teach on).  After speaking to a long term volunteer at the college we decided it might be a good idea to do something about the plight of the bees. The next day I brought Phil’s book into college to see if anyone was up for keeping bees.  It was a near unanimous yes and we quickly formed a bee keeping group.  We built two top bar hives and by another twist of fate one of the students knew Phil, the author of the book and, he agreed to come in and teach us all about bee keeping.

At the same time nearby Buckfast Abby were scaling down their operation and offering out hives and bees, free to a good home.   So almost by magic we built up an apiary of around five hives which included the famous Buckfast Bee.

Now, over the winter one of the hives got very weak, it looked like it was been attacked by hornets and a lot of the honey was being robbed by neighbouring healthy bees, so we had no choice but to feed it sugar solution and hope for the best. During this feeding my suit got dive bombed by bees,  they stung the suit like mad, spreading their venom all over it.  The rest of the story you know – I put on the suit for a joke, my body reacted to the bee venom attacking my kidneys, my feet swell up from excess protein leaking from my kidneys, I’m diagnosed with Minimal Change Disease (still failing to see the irony in that name).

It is funny really as the bee keeping part of the story started in Totnes bookshop and so did my new book (this is thankfully a much shorter story).  I went to the book launch of a book called Local Food by Tamzin Pinkerton and Rob Hopkins at the book shop.  I met Rob and Tamzin briefly and asked them what it was like to work for Green Books, they said it was great. A while later I contacted Green Books, they said they’d love to have me on their (Green) Books then come that spring Grow Your Food For Free was commissioned.  I’m due to have the proofs of the book today; I’m waiting in for the postman as I type. It’s no doubt why I’ve written so much, a distraction from the excitement, I can’t wait to see it.  I’ve seen the odd page or two but not enough to get an idea of it.  Ellie has seen it as she’s been into the offices and she loves it, that’s a very encouraging sign as she’s illustrated it and she is the most hypercritical person when it comes to her own work.

So for anyone reading, the book is being launched at the fateful Totnes bookshop in May, date unconfirmed as yet but around release date of 12^th May.  I can’t help wondering what strange path it might lead me on, it is unlikely that I’ll get a 1 in half a million kidney complaint again but as it all started in Totnes bookshop, I am prepared for anything.

Ha, the proof came just as I was about to post this blog. They look good, they look really good…..

Life has settled into a new kind of normal. My kidneys are functioning again and I now go to the doctors twice a week to get my warferin levels checked.  I’ve got a hospital appointment to check everything is totally hunky dory tomorrow but it’s so far so good.

I’m still tired and not sleeping at night but as for side effects off the steroids I seem to be having remarkably few. My voice has changed, its croaky, weak and perhaps even a little higher but that seems to come and go throughout the day, getting worse in the evening.  I hope it goes, I like my voice, wouldn’t want to lose that!

My brother came down to visit on Friday and I spent longer out of the house than I had done since this started (bar the trip to hospital).  Like most families, we don’t always get on, but I’m glad to say this time we had no problems with each other and he actually did me the world of good. It was nice to show him some plants he hadn’t come across and reminded me a bit of old times when Andy was still learning about foraging.  I built on the extra energy I seemed to find that day the following day and I’m slowly trying to push myself back to the energy levels I had before.

I had great hopes and dreams about writing a novel or at least getting ahead with articles but to be honest I’ve done very little.  I found twitter and already I think I should ban myself from it, I think it’s probably healthier to smoke than to go on that thing! It’s just banal little statements mixed in with something interesting, real addiction stuff, small reward after a long wait.  I think I may have upset Alys Fowler by asking if her Mum’s cake was a foundation block to her polytunnel.  It seemed funny to me at the time but I’m cringing a little now, I mean I don’t know her, it’s a bit rude.

God, I’d much rather be well and outside than stuck inside twittering, it’s like temping again but without the pay – the worst of both worlds.  I’m getting a little better at chess at least and as for the novel I have written an outline.  I’ve also done a little meditation which has been really quite interesting, this might sound strange but at one point I felt what it was like to be a single bacteria cell. It was fleeting but, I shut off every sense and felt what it must be like to only exist, to not have to think, just to sense a food source and move towards it – hard to explain but it was quite a moment.  It was no doubt drug side effects that enhanced the meditation but it was a very interesting thing to go through.

The next step is lower the dose of steroids from a Euphoric 60mg to a ratty and irritable 5mg. I’m not looking forward to that!

I’ll split this into two parts as I need to vent a little before I update about my kidney problems, skim past the first bit if you don’t want to read one big moan or you have googled Minimal Change Nephropathy or Minimal Change Disease and want information about that.

Venting

Having time off is a mixed blessing, it’s a lovely day outside and ordinarily I’d be out there teaching gardening at this time. I went for a short walk this morning and it wiped me out for the day, I can’t bear this exhaustion, I’m doing fragments of work, the odd email but I can’t seem to get my teeth into anything. Since I last blogged my landlady has actually been round to serve an eviction notice, we’ve been told to pack our bags around a week after my new book is released.
I told her it was bad timing as I’m really unwell and she blamed her parents for wanting to sell the house, saying it wasn’t up to her. In the same conversation she did say ‘It’s my house’ like a child would say ‘it’s my balloon’ – it annoys me that she already owns a house and her parents own a huge house just down the road. It is not as if they are short of money, they don’t need to sell and they don’t need to kick us out just yet, an extra month would help. I saw her father (who bankrolled the buying of this place) today mowing the lawn of the local church and it struck me what an odd sense of morality he must have – he’s clearly voluntarily improving the local area by mowing the lawn yet he would deprive someone of a home to leave an empty house for sale during a time when houses aren’t selling. It makes no sense to me morally or financially – perhaps it’s because I’ve let my hair grow long again and he thinks I’m bringing down the neighbourhood with my hippy ways!
Anyway, we knew this could happen when we moved in, we just thought we’d be okay because the house had no chance of selling. So, anyone reading this know of a 2 bed house or flat in the general Totnes area on a long term let? We’re very good tenants, no pets, no kids, no DHSS etc (long shot worth a try).

Kidney Problems/ Minimal change Nephropathy

So let’s not make this a bleak blog, I have good news, I seem to be responding well to the treatment, my oedema has all but gone. My weight is just crashing; I’ve gone from around 12 stone (around 75 kilos) back down to 11 stone or just under 70 kilos in around three days. Normally it would be dangerous to lose five kilos in three days but, this means the excess fluid is leaving my system and it hopefully means my kidneys are getting back to normal. I can call the doctors tomorrow for results of a recent blood test to confirm that but it all looks good so far.

The great thing about the internet is that things like this remain there for a while and this can be googled. So if anyone is reading this who has just had a child diagnosed Minimal change Nephropathy, MCD, Minimal Change Disease, Childhood Nephrotic Syndrome (sadly children are MUCH more likely to get this than adults) or they have it themselves, then rest assured it gets easier. I’ve read up on this and it is very unlikely you can die from this, you might feel tired, the steroids keep you awake at night and that wipes you out for the day BUT all that scary swelling DOES go away.

I’ll leave a short blog tomorrow if I get my results back if not I’ll blog soon keep your fingers crossed.
Here are some useful links in the meantime.
Straight forward BBC article
MCD in adults

March 13th 2011

Freedom is a very vague term. We believe ourselves to be free but we are always under the rule of someone or something else. Currently I am a slave to my health; I’m very weak following my recent kidney troubles and have to sleep a couple of times a day. I am managing two short walks but under doctor’s orders I can’t pick up heavy objects, I can bend too much – in short I can’t garden, despite it being one of the busiest times of the year!! I am a slave to my own ill health.
To add an extra spanner into the works during one of these said short walks today we bumped into our landlady who let us know they wanted to sell the house from underneath us. So once again lack of freedom is apparent as everything is so insecure – home, health, I don’t know about work but I’m not on a permanent contract so who knows what could happen there – a gardener who can’t garden isn’t all that employable!
Ellie and I have lived in three places together since we’ve moved to Totnes, the first was a winter let which we had to move from in the spring. That took us to the only place available a cramped, damp maisonette run by a mean-spirited landlady who would blame us for anything that went wrong. To make matters worse the flat below was occupied by man slowly drinking himself to death and a family next door who, although they were very friendly, argued constantly. It was in these conditions I wrote the bulk of ‘Grow your food for free’.
I feel like a pawn at present, wandering from one bit of bad luck to another. Still, things could be worse, especially if you see what’s going on in Japan at the moment, at least…
…well I won’t finish that sentence, I might just be tempting fate.
Even in my line of work things could be far worse consider Mr John Claudius Loudon. Born in 1783 he started his career as a landscape gardener, being responsible for, amongst other things the introduction of the London plane to the streets of our capital. He started writing at the age of 20 and continued right until his death 40 years later.
For working under adverse circumstances Mr Loudon is truly an inspiration. At the age of twenty he suffered from rheumatism so badly he became disabled from it for two years ending up with a left arm that had become contracted and knee that had fused together. It was in these circumstances he produced a number of works including the 1000 page Encyclopaedia of gardening.
Things seemed fine for a while until he reached the age of 37 (nearly my age now) where his rheumatism returned and on seeking a remedy in the form of the baths of Brighton he broke his right arm which was never fully reunited. Even with his broken arm, which must have meant he was in tremendous pain, he carried on working on re-works of the Encyclopaedia and created the Encyclopaedia of Agriculture in 1825.
In that same year surgeons came round his house to remove the arm only to find him working in the garden, he informed them he would continue to do so once they had removed it. I find this quite astonishing in its own right but also bear in mind that at this point he also had lost the use of his thumb and two fingers in his left hand! A year after this happened he released the first ever periodical devoted to horticulture ‘Gardener’s Magazine’.
He continued to write releasing (as far as I can work out) eleven more books (all weighty Victorian tomes, mainly Encyclopaedias) and five more magazines not to mention working on countless other titles as a contributor.
He was also a father to a daughter, Agnes and tragically left behind a devoted wife, Jane Loudon . Jane, despite starting off as a science fiction writer, way before the coin was termed, continued to write about horticulture after her husband’s death publishing one last tome of his he dictated to her right up until his dying day.
With Mr Loudon in mind I can’t I sit here and moan about overcoming dyslexia to write. The physical pain he must have gone through on a daily basis makes the pain I get in my left wrist, following its break and dislocation a few years ago, pail into insignificance. Even my present condition is nothing, to what Mr Loudon overcame. So, if you have ever been inspired by a gardening book, magazine or blog or wondered where it all began then look no further than John Claudius Loudon the hardest working garden writer that ever lived.

So, in my last blog (Fat feet) I mentioned a little what I’ve been through recently and promised to write some more. It wasn’t an easy decision to publish this but I thought it might help anyone who either is going through or, knows someone going through anything similar. So here are some extracts from the diary I kept in my long three days in hospital. Any thing in bold has been added later and there are some gaps where I decided to remove really dark or overly personal stuff (believe me, you’d thank me for the omissions).

7th March 2011

I’ve been weighing up for the last hour if I’d rather be in prison or where I am right now. At least in prison you are surrounded by healthy people – here the only common bond is we all have damaged kidneys.
It is still a little surreal, how did I end up here? This time last week I was preparing for a week’s work. My book was done, for once I had time on my hands and I had time to do what I wanted. Now I have time but I’m filing it rather than living it. I can’t shake the thought at the back of my mind that these are the last days of my life. Perhaps I’m being a hypochondriac but I am REALLY worried.

8th March

I’ve just had one of the speedy checks by a doctor. He prodded me and gave me a lot of information at once. It appears this could be some kind of immune response to a cold or similar, my body has decided to plot against me!!
I’m finding this whole experience quite dehumanising – I can’t even pee without telling anyone. The food is vile, I mean really, really vile. The white bread toast for breakfast is soft and cold, vegetables come in cubes and it is hard to tell what they are. Today I was presented with a vegetable ‘pie’ which tasted like no food I’ve ever come across before. The guy opposite joked you can only tell it is food if your fork goes in or not. At least it is a common bond on this ward – a mutual dislike for the food.
Some hours later…
It looks like things can change from one page to the next (in this diary). I don’t want to jump to conclusions but it looks like I might be able to go home tomorrow!!

A little later

I had a very kindly doctor tell me in a very calm voice that he was going to remove a piece of my kidney. Put that scenario anywhere else and it would be nothing less than macabre,
‘Hello, I’m going to cut a bit of you out, you could die from the procedure can you sign this form to say that’s okay?’

More time passes…

The guy opposite has just been asked if he has any potential donors, I heard someone say early he was reaching ‘end stage’ not sure what that means but it doesn’t sound good. So this might be bad but at least it is not as bad as that.

Added later – The biopsy takes place, a student nurse who I’ve been getting on quite well with assists the kindly, intense doctor with the procedure. He talks me all the way through it, I enter a world of Zen like calm as it happens, I try and be somewhere else, its warm, I’m on a beach, I can hear the sound of the sea. My meditation is perhaps a little too effective, I start to drool a little and the doctor seems a little perturbed by my lack of enthusiasm and tells me as much. He asks if I want him to carry on telling me what he is doing, ‘Well, you don’t have to’ I answer.
Later we thank each other for making the procedure easy; it is a very unusual moment to share with someone.
The student nurse later tells me with some enthusiasm that, the needle was Massive, and you should have seen the thing he put down it to cut into your kidney. I tell her she should work on her bedside manner a little.
I have to lie perfectly still for 8 hours to prevent risk of bleeding to death (hence adding this later). Ellie comes to see me, we rest our heads on each other as I am unable to embrace her. We cry a little, she leaves and a Devon farm proclaims as she goes, ‘You’re the lucky one, A nice blonde…’ he stumbles across his words deciding to change what he is saying at the last minute, ‘You’ve got the best carer in here!’.
I can’t help but agree with him.

9th March

Following being seen by more doctors…

They say a little knowledge is a bad thing, the only thing I can remember about ACE inhibitors (which I’ve been told may well be prescribed) is they are for AIDS or heart conditions, I must look them up (I had an internet phone with me). Well, it appears they can also be used to treat renal conditions, this being a kidney problem that kind of figures.

And some more doctors see me…

I’m holding back tears today, my prognosis isn’t all that good so far. I could need a year on Steroids, a fucking year!!! Fat, moody, loss of hair, a year of morphing into Shaun Ryder! One phrase keeps going over and over in my head “I’m a young man, this doesn’t happen to people my age”, I’m surrounded by people 40 years my senior with similar problems.

Yet more advice, no diagnosis yet, only speculation…

I’ve been told I’d be in here until Saturday, Frank (a gentlemanly elderly David Bowie look alike in the bed opposite and to the right) tells me ‘No-one leaves at the weekend, it will be Monday’. It is now Wednesday, what am I supposed to do?
Thank god I’ve got this pad, I can’t seem to concentrate on books or magazines. The TV is awful (and expensive), I know why I got rid of it at home, there’s nothing worse than waiting an hour for something to come on by just flicking channels.
Frank compares the ordeal he is currently going trough as similar to Kafka’s trial. I have to admit to not having read the book, Frank tells me it is the story of someone who is put on trial but has no idea what he has done or who is accusing him. He tells me the story highlights the petty bureaucracy we all have to go through, so much so that life becomes dictated by it and it leaves little time for anything else. He (Frank) has been here for over three weeks and he is constantly told he doesn’t quite fit all the criteria to go home.
What’s more, like me, he has been told some many conflicting things, he has no idea what to believe. I’ve been prodded, poked, bits cut out of me, weighed, my blood pressure and temperature taken god knows how many times and I can’t even piss without it being measured. The fluids out has reached such extremes I threw up this morning after another of many blood samples being taken, the nurse picked it up and said ‘I’m going to have to weigh that’ – Jesus Christ, do they want to know how many ml of tears I cry? Should I go out with glasses with handy tear catching attachments!? And the result of all these humiliating tests? We might be able to let you know in a ‘while’, a while is anything from an hour to (in Franks case) three weeks.

A ‘while’ later.

Ha, ha!!! So on this pendulum that swings from certain death to mild complaint I’ve hit somewhere in the middle. It looks like it might just be a month of steroids. The early prognosis is something called ‘Minimum change’. The kindly doctor who put the foot long needle in my back informed me in his slightly intense but very well meaning way, that if he HAD to choose from any kidney disease it would be this one. It seems ironic it is called ‘Minimum change’ swelling up like the Michelin man and taking steroids for a month is not what I’d call a minimal change. I feel a lot more positive than when I was shivering on the toilet floor this morning convinced my liver had given up.
So today’s caveat of this prognosis, If I choose to accept it is…
…this is still an early stage of the prognosis.
And my starter for ten
I have to respond to the treatment.
So perhaps I’m still a bit fucked up but it looks like I don’t need a new kidney and I’m not as fucked up as I could be.
What has caused it no-one seems to know.

I’m back home now as I write this, I’m a little shell shocked to say the least. I’m sleeping a lot and just trying to come to terms with the fact that I have an illness that will either go away or keep coming back. The doctor says I can only ever be in remission but the internet says otherwise, who to believe?