Mind Fog

In the last week I have reach a new level of tiredness like nothing I've yet experienced - though of course we have a habit of forgetting just how awful past experiences were at the time. I seem to have accumulated a (quality of) sleep debt that I suspect can be measured on the same scale as the national budget deficit. Worse, it seems to have entered some kind of positive feedback loop, meaning that I'm so tired that for some reason I'm beyond being able to sleep.

For sometime now, but most noticably during the last few weeks, the moment that my head touches the pillow my mind seems to snap wide awake. I end up struggling to get to sleep for hours on end, drifting backwards and forwards from dozey wakefulness to light but very dreamy and unrestful sleep. My mind essentially doesn't know the difference between one state and the other.

This is difficult to explain, but in normal life during difficult or stressful periods when I go to bed my mind has the habit of naturally polarizing itself towards whatever problem is current. If I don't manage this properly, as I approach the point of falling asleep, my mind will spiral off towards thinking about the most extreme consequences of the problem at hand and, more or less literally, a shock current of fear will jump through my mind/body, instantly returning me to full wakefulness again. If this cycle repeats more than two or three times the chance of me falling to sleep tends towards zero and a very long night ensues.

Over the years I have developed various mental tactics to combat this problem, all of which centre around setting my mind to thinking about something stronger and nicer than the problem at hand. For instance, thoughts of flying, aerobatics or skiing have long been mental antidotes to the daily problems of running a high tech startup and the fine financial balancing act that that entails. More recently Marion and I got our yacht sailing licenses and sailed with the kids around the Greek islands for a week. The idea of at some point in the future being able to buy a nice 45ft sailing boat and having the time to throw an anchor overboard in some quiet bay has fended off many a dark bedtime thought.

But the last months have been so difficult that I have run my store of nice, powerful antidote thoughts entirely dry. Also, at the moment there is so little to look forward to in our future. We have to live our lives day by day, so thinking about doing something nice is about as useful as making plans for First Contact with Aliens. I've stopped flying & aerobatics, we missed out on skiing last season and there's no chance that we'll be able to go sailing this season. Family life has been watered down such that I get to see Marion for about 30 mins per day and Natasha every other day just before she goes to bed. Apart from seeing Nattie, being at home is not very useful, except to get a change of clothes. There's no time to do anything at home and there's nothing to do at the hospital either. (I should add at this point that Lauren has recently taken to phoning more often and of having something to say when she does phone, which is quite nice).

The result of all this is that when I go to bed there's nothing in my head that I can use to fight off the furies-of-darkness. I have then resorted to the simple tactic of staying awake until I'm absolutely exhausted in the hope that when I put my head on the pillow I will blink out before the furies have time to gather themselves. This tactic doesn't always work, but it does always guarantee that I don't get enough sleep. On the other hand, trying to catch up with the sleep deficit by going to bed early doesn't appeal either for the obvious reason: I'm afraid that if I go to bed too early it will give the furies plently of time get themselves organized and I'll end up taking a right old beating.

The last week or so has been some kind of hell in this respect and the only solution that I have found is a chemical one. My good friend Ron has been supplying me with some sleep-inducing tablets that one can get over-the-counter in the US. One of these plus a couple of melatonin tablets, which I use for dealing with jetlag, often, but not always, helps knock my mind into submission, allowing me to fall asleep. But I hate chemical solutions, they are artificial, lead nowhere and simply repress the underlying problem rather than help solve it. So sometimes I get bloodyminded and refuse to take a tablet just to show that I don't really need it, most often to discover that actually I do.

Last night was a case in point. I was completely mentally exhausted when I got to the hospital. Let me try and explain what that feels like: firstly it feels as if my head is stuffed with wool. There's a kind of pressure on the inside of my skull that feels as if its having the effect of slowing down my thoughts. My short term memory doesn't work very well, I'm having to take notes about stuff constantly or rely on someone else's memory. My medium/long term memory seems to operate in slow motion: I'm perfectly aware that I know something but I feel like I'm stood in a queue at the library waiting for the given fact or thought to be stamped with a return date and handed out. This leads to a difficulty to concentrate. I can break through the concentration problem to some extent just by mental determination - work is pretty damned interesting at the moment, which is an incentive. This is how I get through the day at office. It's different when I'm at home or the hospital, it's much more difficult to find the mental reserves to break through the concentration barrier, not least because it takes quite a lot of energy.

But the worst thing is a constant feeling of dizziness that varies only in degree. When I got to hospital last night I felt dizzy standing on my feet with my eyes open. Now, sitting down and supposedly being more 'rested', if I close my eyes I start to feel dizzy. If I have a bad night, I wake up in the morning feeling dizzy, with the room washing around like I woke up in my imaginary yacht in a medium sea. I've taken to lying in bed until this feeling largely passes, which means I'm getting up rather late at the moment.

Back to last night, the problem with being so tired is that I don't feel like doing anything. This just makes the current stay in hospital pass even more slowly. I'm too tired to read these days, I'm fed up with computers, impatient with rubbish TV and therefore just plain bored and Irritable (capital intended). I'm filling in my time playing Suduko puzzles on my iPad, but even that is starting to become rather jaded as my foggy brain isn't prepared to or capable of absorb(ing) the tactics needed to solve more difficult puzzles and the less difficult ones I can now knock off in a few minutes.

So I thought I'd pass the time by watching the England match. Ha, what a bunch of cowboys. I was sat there trying to recall every single word I could that would describe their play: "pathetic" was the first to spring to mind (though nothing actually "springs" in my mind at the moment). Anyway, I gave up trying to entertain myself and went to bed around 11pm. The moment that my head touched the pillow my mind went into overdrive. I knew instantly that I wasn't going to sleep properly. My mind meandered around from one thing to another. I kind of knew when I started "sleeping" since the flow of thought passed from a stream of real things to a stream of unreal or absurd things. But equally it passed just as easily back again. And as it came back I would remember the unreal stream of thought and realise that maybe I'd just been vaguely asleep. At the same time I remained aware of what was going on in Kay's room. If someone walked in I was instantly awake.

An hour and half passed like this until Kay complained of feeling sick and eventually was sick. It was 1.30am when she was settled again and again I tried to sleep. The same thing happened. I tried a new tactic: listening to an audio book, normally guaranteed to put me to sleep if I'm not driving the car. But no good, I'm now hooked on a David Hewson novel.

Around 4am I gave up and dug out one of Ron's tablets. Around 4.30am I guess that I fell asleep properly. But I woke up at 7:15, as usual, feeling just indescribably dreadful. I refused to move until 8:30 when the day nurse came in, needing to reinstall Kay's NG tube. As a result I have been feeling pretty damned awful all day. I have left the parent camp-bed out and have been lounging around, trying to rest. But that's barely possible here during the day.

This evening we had planned for Marion & Nattie to come over. I was looking forward to spending an evening with them and, with a little luck, the three of us sleeping in the McD house. But Marion just phoned to say that Nattie is having huge fun at an end-of-hockey-season competition and party and doesn't want to leave it. Nattie needs to have some fun, so fair enough. But I guess that that leaves me on my own with a sleeping Kay for yet another night.

You have no idea how much I'm looking forward to it.

No Feelings

There has been a very sad death on the ward today, the child in the room next door no less. Leukemia patient and recipient of a bone marrow transplant. And I don't feel anything.

We heard the news this afternoon via the unofficial grapevine, but the basic fact was confirmed later by the staff. In a sense I've had no time to process this event, I've been 'busy' doing various things. I was doing some work on my laptop, we've been out this evening, Kay had to clean her teeth a couple of times, etc. But a little while ago I arrived back at the McD house and sat down in the library, on my own, door shut. It occurred to me that I'd not spent five minutes thinking about the aforementioned event.

So I started to push my thoughts in that direction...   ...and met a kind of solid wall of resistance. There seems to be some kind of mechanism in my head that won't let me contemplate the implications of this tragedy. I just cannot imagine... whatever. I have no feelings or thoughts about it.

I'm amazed. I thought that the human mind had some kind of morbid magnet in it that polarized itself towards tragedy, examples being all the rubber-neckers in cars driving past an accident on the motorway or all the other kinds of disaster tourists that we have come to know and love. But in this case my mind is reversed polarized, my morbid magnet swinging definitively away from the contemplation of tragedy.

It's a strange feeling, there are lots of unformed misty thoughts flowing around in my head that would like to find their way through my fingers onto this page. But try as I might to grab one for examination & dissection and it slips out of reach, repelled by the very effort. What is this? A defence mechanism? A kind of subconscious fear of facing an evil? Or have I simply become inured to this kind of fear and suffering? Am I/are we going to end up suffering some kind of post-traumatic stress when we get out of here and try to reenter the real world and recalibrate our senses & values for daily life?

Oh, I'm so tired.

Hill Climbing

As mentioned previously and in keeping with Marion & Kay, I'm tired. It's the most annoying kind of tiredness: I can't read for very long or at all, I can't keep my concentration on even simple work, but equally I don't feel like sleeping. In fact I keep waking up at 6am no matter how tired I am or where I'm sleeping. This means that I'm pretty damned bored, frankly. I'm using my laptop at lot, browsing around looking at various things, tidying up my disk, cataloging my 18,000 big digital photo library (Lightroom is a wonderful program!) and watching TV via the Slingbox. All "make work" jobs or things that have been lying around waiting for me to have an idle moment.

My usual cure for this kind of tiredness is exercise, I get on my bike and burn up some kilometres. Today I had planned to cycle from Nijmegen to Teuge to have lunch with Frank and do the pilot talk thing for a while. But when I woke up this morning and contemplated the 110km round trip I just couldn't find the energy. In fact it was worse, I didn't feel like cycling at all, just lying in bed and dozing instead. Now I know that this is more or less the worse thing I can do, so I got up, put my cycle gear on and ate breakfast thinking this would help. After breakfast I went back to the McD room and flopped on the bed again. I took me about 30 mins of winding myself up before I got out of the door.

The area around Nijmegen is very beautiful and surprisingly the countryside is rather rolling with some nice hills. I had previously downloaded a GPS cycle route of 53km which covers most of the interesting hill climbs in the area. Now, I'm used to cycling around our house in France where we have real hills, mountains even, so the "bumps" covered by the aforementioned GPS route didn't phase me at all. I thought that I was in for a nice easy ride with some gentle climbs here and there. Such was my confidence that I decided to push the route out a little further to 60km since it was a nice day and I wanted to enjoy the sun for a bit longer.

For the largest part of the route my assumption held, but on the initial gentle climbs I could feel tiredness in my legs and I was glad not to have attempted the ride to Teuge. After about 45km I climbed up to a village called "Berg en Dal". I noticed that the GPS track became quite twisty at this point and wondered why. The name of the village should have warned me, it's "Mountain and Valley" in English. The twisty bits of the track turned out to be a series of steep climbs and drops that seemed to cover the "Berg" from every angle. I gather that while relatively short, some of the climbs go over 10%, though I have yet to check this on my GPS.  

I have been practicing hill climbing on my bike simulator during the winter and have been putting in some quite good times. Recently I even did the Alp d'Huez on the simulator and put in a reasonable time, all things considered. But I have to say that I struggled with these piddling little Nijmegen hills today.  I just didn't have the strength. This is pretty upsetting because it means that my hard won fitness is fading rapidly as a result of all these hospital hours and I will have to do a hell of a lot of work to get it back again. Also, I can feel that I'm dragging around way to many Kgs (again) and that will also have to go - I suspect that I'm carrying a weight penalty of 8-10 Kgs, which is rather a lot of excess weight drag up these hills unnecessarily.

So I guess that as a result of Kay's treatment each of us now has their own metaphorical hill to climb on the road to recovery. Kay, her health. Marion & I bone numbing tiredness, excess weight and decreased fitness.

This is going to take a while.

The Dreaded Munchies

I have discovered a(nother) flaw in my character that previously I’d only suspected: I have a weakness for munching. Mostly it’s something that a) I have under control and b) that is not too noticeable since I’m usually fairly busy and burn a fair amount of energy. Also in normal life I am not presented with the opportunity to munch, or I avoid it. In October 2008 whilst driving down to France I sat in the car feeling rather porky and decided to do something about it. In the next 6 months I gradually lost 10kg due to a combination of restricted intake, healthy eating (thanks to Marion) and increased exercise. I really was quite pleased with the result and even got into a pair of 32” trousers at the start of summer last year – wow!

However, Kay’s situation destroyed my self control. In the period since she has been ill I’ve put back on around 5kg. In the last months I’ve tried do something about the creeping gain, but I’ve not been very successful, partially because Marion is not in the mood to worry about dietary niceties and partially because I’m often just too tired to do the exercise thing.

Since we have been here though, this munching weakness has become a real demon. For the first week I felt permanently hungry and, because I don’t want to put on the Kgs, I was aware of the fact and trying to combat it. This really only made things worse: I was walking around more or less consciously trying to repress the munchies and consciously failing. I did manage to get a couple of bike rides in to burn off some of the calories and I always take the stairs up to Kay’s ward. But still, this is not much compared to the sedentary lifestyle that being in isolation imposes.

This week things have been a little better: I have taken to avoiding the cafeteria and just eating stuff that Marion has brought in. Since she has little interest in shopping, that’s a self regulating mechanism: bread roll & cup-a-soup for lunch, bread & cheese for breakfast. Evening meals are Appie Happie microwave steamed affairs, which are reasonable and reasonably healthy, I suppose. However, a friend who lives locally has introduced us to an excellent Indian restaurant, so we’re trying to avoid developing an addiction in that direction. Fortunately they don’t deliver, so the throttle is the effort of driving into the centre of town and finding somewhere to park.

At the moment I just seem to be getting more tired. It’s quite nice out and it’s my turn to have some time off today, so I could go for a bike ride. But mostly I feel just like curling up on the bed and snoozing, which won’t help with the munchies, the calorie burn or sleeping properly tonight.

And we have weeks of this facing us. I’m dreading the moment when we get back home and I have to face the bathroom scales again. I bet that I’m going to have to do the “drop 10kg” thing again. Damn!

Safety is no Accident

I’m kind of past the point where I feel able to write down how I feel about everything that is happening. On the one hand I think that actually I/we are doing OK. On the other we live in such a displaced reality that the word “OK” cannot calibrated to normal living. I mean, how can things be “OK” when for the last week doctors have been pumping Kay’s body full of toxic chemicals to kill her bone marrow?

But this sense of “OK-ness” persists for some perverse reason. I’m left wondering if we’ll ever return to normality when “OK” means to us what “OK” means to you. Or will we end up living the rest of our lives in the shadow of leukemia? That’s really what worries me: whether there will ever be an end to this episode. I’m afraid not. I think that when we’re through the bone marrow transplant phase, Marion and & I spend a very long time worrying – at least seven years to say the least. And you know what? I really don’t want to spend my life like that, not that I have much choice of course.

So how can one possibly return to a world where “OK” means to me what “OK” means to you?

Back to slightly less philosophical matters, I probably don’t need to say it, but I’m staggered that the medics here have made yet another blunder with Kay’s treatment. I’ve now had 24 hours and 93km on my bike to think about it and I still cannot get my head around the idea. In the worst case we could have brought a child to this hospital with leukemia and taken anyway a child with brain, kidney and bladder damage. Not to mention the expected permanent side effects of the treatment. And you know what makes me really mad? I can live with problems that arise from a doctor having to make a judgement call and getting it wrong. Ditto with failures of medical technology. But the fact that the things that have happened to us have been avoidable failures of the system makes me incandescent. Whatever happened to the Hippocratic Oath’s “do no harm”?

And the other problem with these failings is that they are faceless. No individual directly screwed up. The problems arose in the gaps between people, in the places where a system is supposed to exist to ensure consistency and continuity.

The UK Civil Aviation Authority’s motto is “Safety is no Accident”. The Hippocratic Oath’s “do no harm” can be equated to (at least) a doctor’s duty to ensure that safety of their patient at all times. And that is not happening here. Time after time Kay is being exposed to toxic chemicals without adequate safety precautions. If this was an aviation organization, it would have been shutdown years ago. I’m truly astonished that these people are allowed to go on practicing medicine in this way. Someone should have blown the whistle on them ages ago.

Intensive Experience

We’ve been hanging around in the High/Intensive Care unit for a day and a half now. I have to say that it’s an experience that I’d rather not repeat. The atmosphere in the place is so incredibly grim and intense that just being here weighs heavily on one’s soul. Of course, what should one expect from a department that looks after critically sick children? But the answer to that question is theory, which in this case is quite some distance removed from reality.

It’s difficult to describe the reality. On the one hand the department is extremely “gently” presented, lots of light, lots of space, pictures and toys around the place. The staff are friendly and professional. Even the equipment and patient bays are not particularly intimidating. In fact there’s nothing physically grim about the place at all. Also, in general the bedside parents are only as worried as one would expect (ie terrified). But they’re coping, as are we.

So why is it that I experience such a grim, intense atmosphere? I find it very difficult to say, actually. Strangely enough, I don’t think it has to do actuality of the unit. I think it’s more to do with the fact that in this department one is only separated from the potential death of a child by a very thin veil. And one can feel it all around. When you’re here you’re close to life shattering, irreversible consequences.

Here, I feel optimistic about Kay for some reason. One nurse said to Kay that she wasn’t used to having to deal with patients that talk back or want to get out of bed to pee and I think that’s what makes me feel optimistic. But that’s not to say I don’t have my worries, of course I do. And in any other place my worries would be off scale. But everything is relative – the last months have taught me this in the most explicit terms - and here there are worse things. Are you starting to understand what I mean?

Yesterday a family lost a child in the IC. The McD parents room was crowded with grieving relatives and again today. With the greatest respect for this family, as the parent of a child lying the HC/IC I found it extremely difficult to be exposed to their grief. Kay is in an isolation room in the HC unit, a small space full of equipment and no windows. Kay wants the light kept down so we’re sitting in a box in permanent twilight. Every now and again it is necessary to have a break, get some air, lighten one’s soul. But every time I step out into the McD room, I’m again confronted with this family’s pain and I end up – literally – hurrying back to Kay’s bedside. I’d rather sit here in the gloom watching Kay’s monitors and worrying about her than be confronted with what is on the other side of the oh-so-thin veil.

Waiting game

This waiting game is extremely tough. Working on the assumption that the conditioning will begin on Monday, I'm now almost finished with clearing my desk/action list for the next weeks. This is extremely confrontational, since there's now nothing between me and what happens next.

The tension and emotional build up is indescribable. I think that if a gun went off right now I'd break the world record for 100m.