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.

I'm fine, really!

People keep asking me how I'm doing. This is an incredibly difficult question to answer when it comes down to it. But the simplest answer is that I'm doing quite well, I suppose. Like Kay, I'm keeping myself fully occupied with work and everything and anything else that I can think of strong enough to distract me from what is coming. And I think I'm doing that pretty well. Admittedly a few aches and pains here and there, but I'm dealing with those by visiting the Physio a couple of times per week.

My weak spot is my neck and shoulders, particularly my right shoulder, which is pretty painful at the moment. But, yeh, this is where I always feel a build up of stress. Apart from the treatment by the Physio, I'm supposed to spend 2x10 mins per day lying on a backstretcher. This device is great for loosening up a stiff back/shoulders. Normally I can spend 10 mins lying on it but my back is so stiff at the moment that 5 mins is more than enough. So I have something to aim for! Still none of this really gets in the way of anything.

A bit more annoying is that for the last week or so I have been waking up with a headache, the kind that feels like a fairly heavy hangover. And this has been happening even when I hadn't had a drink the evening before. Starting the day with a headache makes it even more difficult to get moving, but I have a lot of things to do, so I've taken to killing it off with ibuprofen. This has the added advantage of making my shoulder less painful. Also, I suspect that neck/shoulder issue might be causing the headaches, but I would then expect them later in the day, not when I wake up. A puzzle.

It's a shame that ibuprofen doesn't help irritable bowel syndrome problems, because then I could kill three birds with one stone. IBS is an old enemy of mine that comes and goes with the times. I've been pretty free of it for the last year or two, but yeh, it's back again. Exercise helps greatly to reduce the symptoms, but that's something that I can only really do in the mornings at the moment. By the time that evening comes around I'm just too tired to get on my bike or the cross-trainer. I was planning to jump on the cross-trainer yesterday morning, but in the end was beaten by the headache.

Another side effect of this is that I'm not burning the usual amount of calories. Combined with a reduced will to exercise and general tiredness my self discipline has also slipped meaning that I've put back on 5kg of the 10kg that I lost a year or so ago. I can feel it when I'm cycling, like dragging around a weight belt. Annoying, but you know, I'll sort that out when life gets back to normal-ish.

I was lying in bed this morning, waking up and lazily thinking about the general need to get up and do something when I felt my nose start to run. Not the normal cold sort of run, but a warm trickle - nose bleed. Fortunately only a minor one, but rather out of the blue. It set me thinking: maybe all this worry is having more effect than I'm admitting. But yeh, what can one expect? Fortunately none of these things are actually getting in the way of living the day out and none of them are strangers to me. Bearing in mind divorce, leukemia 1, Verum and leukemia 2, I've lived my life with one or more of these symptoms for many years now and I'm still just fine. Aren't I?

Anyway, I have to run. The long hours of working & computer use have given me the beginnings of "mouse-arm" in my right wrist and lower arm. I have be a little careful not to push my wrist too hard or the blogs will be silenced. The one advantage of starting the BMT will be that my wrist will have some time to recover.

So yeh, under the circumstances I'm just fine, really.

Barbaric Alchemy

The eye of the hurricane is a very beguiling* place (*I had to look that word up in the Dutch - English translator. Only the Dutch version, verleidelijk, came to mind. Just shows that I've been living here too long). Things are almost 'normal' at the moment. I'm working more or less full time, Kay is at school more or less full time. She is playing hockey and horse riding, etc, etc. Almost like real life.

However, 'almost' is the most significant word is the last sentence. In normal life one doesn't have conversations about Total Body Irradiation, etc, whereas in this Neverland in which we live such conversations seem almost normal. And that's the odd thing about the last week. We have been to the hospital twice and we have discussed the ins & outs of a Bone Marrow Transplant, we have heard about and understood the horrors of Conditioning, Kay has been milked for blood, we have blithely chatted with the Radiologist whilst stood in the radiotherapy chamber and then we have gone home, had lunch and gone back to work/school/'normal' life. This is SUCH a BIZZARE situation.

However, its not going to last much longer. The horrors of the situation are going to return with a vengence, that's clear. And it's very scary. So the only way to deal with that is to throw oneself into 'normal' life with a vengence equal and opposite to that which is coming our way. And that is clearly what Kay is doing, what I am doing and, I suppose, Marion too. In the last six years Verum has been the biggest bane of my life. At the moment it has become the biggest, best and most welcome distraction. Weird. Nothing about Verum has particularly changed to elicit such a shift in my point of view, so it must be me that's changed. Evidence of just how much one's perspective can be changed and what consequences can flow from nothing more than an altered mindset. The power of thought, I suppose.

The thing that I find most scary at the moment is the idea of sitting my precious daughter at the wrong end of a defocussed gamma ray generator for an hour, during which the generator will be turned on for 30 minutes, irradiating her from head to foot. As a physicist, this seems to me to be an especially bad idea. Side effects will include nausea, damage/destroyed mucus membranes, etc, and can include cataracts (like cooking an egg in a microwave, I guess), hormonal problems and an increased risk of secondary cancers in the future. This seems to me to be such barbaric medicine: smash everything to pieces and see if we can rebuild a person from the remains.

It's definitely true that, if we were not already there, we have now entered into the dark side of medicine where treatments are essentially nothing more than barbaric alchemy. The first time that Kay had leukemia it struck me that the treatment was really an alchemic process, although in these modern times we use modern words, we call it a "protocol". It interests me greatly that so much of modern medical technology takes the form of protocols. Medics have learnt through the years that by combining treatment A with treatment B with drug C in certain amounts and ratios and in a certain sequence that sometimes a positive result is achieved. Like turning lead into gold maybe?

Again, as a physicist and computer guy this sounds like poor science to me: dip the patient into chemical soup and bombard them with gamma rays. Then inject someone else's stem cells into their body and cook for 4 - 6 months. Open oven and, cross fingers, a cured person will emerge (with a new blood group and a reset immune system). The crudity of it is astonishing. And frightening. And indicative that the medics don't really have much of a grip on what is going on here. They have no targeted, specific techniques by which they can address the problem, the tumour, at source.

Another thing is that most of the drugs involved in this alchemy were invented in the 50's & 60's. I keep looking up the drugs that Kay gets to find that eg Vincristine was invented (discovered, actually) in the 50's, etc. Certainly since Kay first had leukemia not much has changed on the treatment side, although new technology has merged in the diagnostic side, eg the Minimum Residual Disease measure. As someone who lives in the high tech and rapidly developing world of computers and software it feels to me that medical technology creeps along at a snails pace and that, although we have gone very far with some very subtle things, for instance the decoding of the human genome, we're still at a medieval stage when it comes to treating a range of common problems/diseases.

When I think that my iPhone includes chips that have been massed produced using techology that works on the 25 nanometre scale, that is a physical expression of the exact sciences of physics, chemistry and mathematics made it possible and that there are factories the world over who are routinely stamping out millions of chips per year at this or lower scales, it seems to me that medical technology has a long way to go by comparison. I hope that the day will soon come when medics will be able to cure a given disease using specific, targeted treatments. It would be wonderful if they could simply inject Kay with nano-machines that were able to specifically identify her faulty pre-pre-B cells, kill off all these cells whilst stimulating her stem cells to manufacture new pre-pre-B's without the genetic corruption that is causing all her problems.

Well, dream on. I suppose I shouldn't moan. At least there is a treatment for Kay's condition, even if it is barbaric alchemy.