Christmas Thoughts

I've not added to my own blog for weeks, mostly because I guess that I'd become accustomed to the situation and also because I've been too busy and too tired to expend much energy on self reflection. The initial feelings of unreality that I'd felt have passed, replaced by some kind of mind numbing acceptance of our daily reality. I've become adept at not asking certain sorts of questions, not allowing myself to think certain kinds of thoughts, not counting on realising any plans, not allowing myself to think about the future. I've tried to find joy in immediate things, things that happen by the minute, things that are small scale, details of short term life: a dry witted remark from Lauren, an acute and funny observation from Natasha, a laugh from Kay. These things are precious of course and I probably don't appreciate them enough under normal circumstances, but they don't fully compensate for losing the future.

This is no way to live one's life. Certainly, it's against my very nature to focus on micro events. I always have plans. When I reach A, in my head I'm always already planning and heading for B and I have C in mind. I have viewed this as one of my greatest short comings, the fact that I never stop and absorb or enjoy the here-and-now. It makes life rush past rather (too) quickly. One facet of this is my inability to enjoy "moments of celebration". Usually when such a moment is reached, such as closing a business deal or launching a product, my mind is already over the horizon and the moment of celebration seems irrelevant. So I suppose, on the basis of "the things that happen to us reflect the lessons that we most need to learn", I should welcome the current situation as basic lesson in establishing a better balance between the here-and-now and the future. But frankly, in my current "stripped down to bare metal" state of mind I have no time for philosophical sops, they offer no protection against the daily harsh reality of having a child with High Risk Leukemia.

The problem with this time of the year is that it's full of reflection, of past and future. Frankly this is overloading my "think only immediately" mental dampers. I know that Marion is also suffering from a similar problem. She has been bursting into tears at the drop of a hat all week and, without even having spoken about it, I know that fear of the future and the difficulty of the present is just too much for her. She's only just able to continue functioning. And I'm close to being in the same state, though for me the effect is different. I just try to retreat further behind my mental firewall, which to everyone on the outside (of my head) seems to appear as an increasing distance/detachment from daily/social matters. For instance, in the days leading up to Christmas many of my colleagues came in to my office to wish us a Happy Christmas and to offer their hope everything would go well, etc. I found it extremely difficult to deal with these very kind and dear thoughts and good wishes. I just wanted to be left alone because right now I can't deal with good wishes for the future, because we don't have a future. Or rather, contemplating any aspect of the future, even in the form of wishing us a Happy Christmas, threatens to break my mental dampers.

And here's the dilemma: on the one hand, I/we need to feel/receive support more than ever. Every kind word, comment, email that we get is treasured and makes us feel better. On the other hand, I find it extremely difficult to deal with anything that even vaguely touches on the future, or the past for that matter. For instance, just consider the word "hope". This is a word that is completely filtered out/banned from use by my mental firewall. I have no interest in the concept of hope. If it's one thing that I have learnt, when it comes to pure fate things are what they are and will be what they will be, no matter what I might hope for, no matter what I might wish. Specifically, Kay's cancer has a dimension to it that is to a certain extent resistant to the chemotherapy that she had 7 years ago and to the chemotherapy that she's getting these days. That's why her MRD is high, that's why she needs a bone marrow transplant. The idea is to reach the lowest possible MRD with chemotherapy and then kill off the rest of her bone marrow in the hope of killing off enough of the chemo-resistant cancer cells so that when new bone marrow is transplanted the very, very few residual cancer cells left will be cleaned up by the body's natural defences. However, no-one can say for certain if this will work. So it's down to fate. There's nothing that I can do to influence the outcome. No amount of hope, no amount of wishing or praying or anything else is going to affect the outcome. So I don't plan to think about it, just merely still be here when the result becomes apparent.

Mental firewalls have their limits, at least mine does. It has worked effectively enough during the last weeks, but in the context of Christmas it has barely been holding its own. Frankly, I'm terrified. I'm terrified that next Christmas there will be a gaping hole in our family. There, I said it. Now I can't see the screen through my tears. Wait a sec, I have to pull myself together...

During the last days, and especially, nights I have found it increasingly difficult to turn away from such thoughts and their consequences. Even during the day, focussing on the minute-to-minute moments and trying to treasure them, part of me is wondering how many more of them there will be. Again, one can call on a philosophical sop and say that none of us know the answers to these questions, that I could have a heart attack on my mountain bike later today. But this is of course merely a sop, the abstract versus cold reality. Cold reality wins every time in my book. So, right now I feel like the Grinch: I hate Christmas.

And New Year will be worse. I know for certain that the closer we get to New Year the more inconsolable Marion will become. And I hate New Year at the best of times. In the last years I have found an antidote to New Year, namely walking on the beach in St Cyr (near Bandol) with the family & good friends followed by sitting outside in the winter sun drinking wine at a nice restaurant. However neither of these things are possible this year and we can't arrange to have friends round on New Year because anything can happen between now and then. So, just let us return to the other 50 weeks of the year when we're not confronted with a constant stream of relativistic moments and messages, and the impossibility of having a social life during the most social weeks of the year.

I have delayed going mountain biking to write this because I felt so extremely awful, having just waved Kay & Marion bye-bye. But writing is cathartic to an extent, surprisingly enough. So I'm off to see if I can't cheer myself up some more in the woods. Frankly, I'd better just press the "publish post" button and not reread this or I'm likely to pull it - such emotional stuff. So forgive me any spelling or English mistakes...

Tired.

I'm so tired it's difficult to find the energy to even write this blog. In fact I'm only doing it out of bloodymindedness, to push myself to do something with the day.

This morning I had an appointment at 7.30am with the physio to see if he could help with the headache that I've had for the last week. He discovered that the muscles at the base of my skull are rock hard and massaged them, partially releasing some of the pressure in my head.

I had an enormous problem getting out of bed for this appointment so when I got home I decided that I felt rough enough to justify taking the rest of the day off. I went back to bed expecting to sleep for a few hours and have been unconscious for the best part of the day. As I sit here now, I could fall asleep in a few minutes.

I plan to take it easy this week and allow this tiredness to take its course.

I've had a few comments regarding my remark last week about Marion being in a bad temper, including a demand from my sister to remove it from the blog. I don't intend to air all aspects of this situation in a blog, don't worry. But equally it is true that the situation puts a lot of pressure on relationships and that every now and again this has visible consequences.

The last time that Kay had leukemia our marriage suffered under the pressure and the results of that took years to mend. This time we're more aware of the effects and we're taking steps to avoid a recurrence of this problem. For instance, last time it was two years before Marion & I had a weekend away on our own. This time I intend to try and arrange time away for us as soon as the situation allows. As Vivane remarked one of her comments, it's essential for a couple in this situation to think about themselves and their relationship too. But to be honest, such thinking doesn't get much priority under the circumstances unless one explicitly gives it priority.

It's an illusion to think that a marriage can get through such difficulties without stress and strain on the underlying relationship, not least because Marion & I have seen each other so little in the last weeks, that we have our own perceptions of the events and that when not dealing with Kay, the business, etc, we're both too tired to put any energy into anything else. Also, men and women react completely differently: I don't want to talk about any aspect of it more than once and I only want to deal with facts, no speculation. Marion wants to talk about it a lot and in, for me, minute detail. This is also difficult to reconcile.

My goal with this blog is to partially to sort out and organize my own thinking, but also to let my friends and family know how I am/we are doing. I have to find a balance between these things and erronously airing things that need to remain private. So if I cross a line here or there, please forgive me. This is not an easy situation and none of us are perfect, least of all me.

Now it's the turn of the parents

Possibly because Kay is doing better this week, possibly for other reasons, but Marion & I are now not doing so well. Last night Marion seemed to have had some kind of stress attack, bad headache, vomiting. Neither of us slept very much. Marion's still in bed.

I had a bad day on Tuesday. I started with a wierd headache in the morning, not the usual sort of headache but a feeling that my skull was going to explode due to pressure. At lunchtime I went to get some food and as I stood in the queue I started to feel extremely nauseous, then dizzy, then I broke out in a cold sweat. Things began to seem extremely far away. I went back up to Kay's room (we were in Nijmegen) and felt worse and worse, and I started to get pretty worried. It was clear to me that although I had physiological symptoms, the problem was not physiological. I didn't feel ill, but I did feel on the edge of I-don't-know-what. Clearly something was very wrong.

I ended up calling the nurse who then called in the duty psychologist/social worker. Sat down with this guy for about an hour and talked things through with him. This took away the feeling of impending doom, but I still felt absolutely terrible. I went back to Kay's room, took an ibuprofen and lay on the bed for the rest of the day. The headache was so bad that ibuprofen barely touched it. Fortunately I was reading the last installment of Steig Larsson's Millenium trilogy, which is absolutely gripping, and I found that as long as I kept reading things didn't get any worse.

Since then the headache has receeded, but it's not gone. I still have a feeling of pressure in my head and the slightest additional tension starts it growing again. I have a definite need for some peace and quiet, and probably a long holiday. But all of these things are difficult to find at the moment. I can live with the headache as it is right now, but it worries me that I don't feel as though I have any control over it, I don't know how to reduce it nor do I know how to prevent it from getting any worse.

I guess that I have finally discovered a limit to my ability to take stress. Frankly, I rather not have discovered it because what is beyond that limit is unknown and quite scary. Going to have to stay this side of it.

Life in the Twilight Zone

Brilliant! It's Saturday morning and we're at home. Today started early for Natasha - hockey match away - but slowly for the rest of us. Kay & I soaked ourselves in the bath to get rid of the hospital smell and now we're sitting on the sofa, Kay watching TV (not normally allowed during the day!) and me with my laptop. Marion's heading out to do some shopping. I have a bunch of things to do but my personal battery is flat. Soaking in the bath is a good way of measuring how much residual energy one has and I failed to register on the scale this morning. How Marion keeps on going I have no idea.

Marion & I spent our first night in the same bed for more than 2 weeks last night. It was almost like sleeping with a stranger and on that basis could have been quite fun if we hadn't both fallen into unconsciousness. Kay woke four times during the night, three times to go to the toilet and once because her food supply needed changing. It seemed that she always woke when I was deeply asleep because I felt like a complete automaton when I had to get out of bed. The broken night has not helped my tiredness.

Still, it's great to be home and even better that Kay is so lively. The difference between her state today and when she last came home is huge. And let's hope that it stays that way.

I'm using the backspace key quite a lot, writing this text. I keep wanting to make relativistic remarks like, "things feel nearly normal" or "Kay is much better", or futuristic remarks like, "Tomorrow I'm going mountain biking" or "hopefully the worst is behind us". I just spoke to my sister-in-law and she said, "I hear that Kay is better". These relativistic or futuristic concepts have no meaning in the world in which we now live.  We live from hour to hour, knowing that at any moment our plans can change dramatically. And the only thing that we can be sure of is that, sooner or later, our plans will change dramatically again. It is highly likely that Kay will get infections and that we will have to hurry her to hospital. Each time this happens she will have to stay in hospital for four days after her fever has gone. If the problem is a fungal infection it can take days before the fever passes. And some fungal infections are very dangerous...

So to say relativistic things like "Kay is better" or "things are normal" is to make a grave error of perspective. We live with a child who has cancer in her bone marrow. Her immune system is practically non-existant. The bacteria and funguses that she normally carries with her can become dangerous to her at any moment. Next week her system will yet again be blasted with three different chemo agents and marrow will again be sucked out of her bones. There's nothing in normal life to which this can be related. And our future remains entirely unpredictable. Welcome to the Twilight Zone.

I guess that we have made the short term adjustment to living in the Twilight Zone. I have ceased to make solid plans for anything or, in my mind, to commit myself to anything. I don't ask questions about the future and I don't make predictions. This is totally and utterly against my nature, but completely necessary.

But I find it very difficult to swallow the medium to long term consequences. I already miss our house in France and I have absolutely no idea when we will get to see it again. The rules of this situation seem to be that we will have to remain within 60 minutes of a (known?) hospital for the next 2 years. A 12 hour drive down to the south of France would require us to first map out all the hospitals along the route and a dramatic improvement in our French, especially medical terminology. We've already cancelled our ski holiday for this reason, at least. But to be honest I can't bear the thought of being restricted to The Netherlands for all our holidays in the coming years. Nightmare. The only way to deal with it is not to think about it right now and wait and see what happens, ie completely accept the rules of the Twilight Zone...

Sub Prime Emotional Debt

I haven’t written anything in days about my own perceptions of Kay’s illness. The reason is that it’s really all too awful to attempt to describe. But at the same time I’m kind of getting so used to the awfulness that it’s beginning to seem like normality. Take Kay’s epileptic attack yesterday: when I saw the attack starting I surely felt the same rush of panic that had Marion bouncing off the walls, but it was gone in a second and left me able to think about what to do, so I stepped in to Kay’s side and started talking to her.


“Think” in this context is a relative term. My mind is operating at about 50% or less of its normal capacity. Don’t ask me to solve any complex problems at the moment or think about anything in any great level of detail. Most of my “thinking” is merely the execution of standard programs that have been running for a while. I’ll run into problems if (work) circumstances change and I have to be creative. A small example of this is that I have been writing my presentation for the Bits & Chips conference later this week and it’s an extremely difficult and slow process to string my thoughts together creatively to produce a story that runs consistently across 30 slides. That, and to ensure that the story is a sensible, presentable piece of work.

After the attack I’d expected to feel shock or some kind of recoil from a terrible incident. But I didn’t feel very much actually. Yes, it was frightening. Yes, it was a big shock. Yes, etc, etc. But I’d expected to feel tears or anger or relief or anything, really. I suppose I’m becoming inured to the whole experience.

As I mentioned before, my approach to dealing with the emotional content of this situation is to push the emotions to one side for later digestion, at a moment when I feel stronger and more able to cope with their intensity. In the beginning it was very hard to do this, all the difficult, meaningless questions kept thrusting themselves to the fore. But it’s been a while since I had to exercise maximum mental discipline to keep these things in their box. Now it seems that I have reached a state where I don’t have to work at all, all the nasty strong emotions now seem to automatically walk to the box and jump in and close the lid behind them. I almost feel resentful, there’s no sense of achievement, of having mastered the situation. And as a result I’m starting to wonder about my own, well, sanity. But “sanity” is not the right word, “desensitization” (gosh the spelling checker accepted that first time!) I suppose is a better word. But that’s not it either.

At the beginning of Kay’s sickness my first reaction, based on our experience last time, was that we/I needed professional mental help and support. But now another part of my mind feels pretty much like I’ve mastered the situation in a strange way and that I/we don’t really need mental support anymore. It was just a question of adjusting and the adjustment has been successfully made. High Five! All that stuff in the box will either stay there or will fade away with time, won’t it? It matters not.

But another part of my mind is waving its arms, trying to get my attention to tell me that that isn’t necessarily true, that desensitization is probably not a good thing on the long run and that I/we probably need mental support now more than ever. Well, maybe. But frankly I’m too busy worrying about Kay and trying to get everything else done as well to expend effort on the subject. And the “High Five” view is more constructive, convenient and useful in the current circumstances. It allows me to function better than otherwise. Still, as I write this I have a strange ‘vacuum’ feeling in my stomach, a sort of worry that I’m clocking up a massive invisible debt that will have to be paid back later, with interest. And as we have all learned in the last year, debt is a bad thing.

Hey, here’s an idea. Maybe I can package up all this debt and sell it to the bankers? They buy anything without asking questions so it should be easy to pass on to them a load of sub-prime emotional debt.

Funny Story

Ok, to lighten the mood and give an indication of the state of my head the following story from yesterday:

I picked up my Mum & Aunt from the airport yesterday. Typically my luck at the moment, the normal 50 min drive to Dusseldorf took +2 hours. It turns out that yesterday was the busiest Sunday ever on the Dutch roads and I got stuck for more than an hour trying to get through Roermond. So on the way back I was very late. Then Marion called to request that I spend the night in the hospital. Since we'd not seen each other in the previous 24 hours we thought it would be good if we could meet at the hospital before 7pm so that we could grab a bite to eat together - the resturant closes at 7pm.

I got home at 6pm and had to sort out my stuff for the night whilst making sure that Lauren was ready to return to school, that Nattie was OK and Mum & Aunty Jackie were pointed at the kitchen.

At some point I run upstairs to put my suff together. As I walk into our bedroom I think, "I need my toilet stuff from the bathroom and also I need a pee". So I walk into the bathroom, thinking about what I need, etc, etc. I flip the lip up, unzip my fly and then (fortunately) look down to make sure that my aim is correct only to discover that I'm about to pee in the laundry basket!

I can tell you now that not even when extremely drunk during my student days have I ever confused a laundry basket for a toilet. Just goes to show what sort of "woolly thinking" (actually I prefer the term "fuzzy logic") is going on in my mind.

Tough Kid

The last few days have been busy. Working, plus sharing in Kay's care, plus the normal family stuff. I keep thinking that Kay's care doesn't really amount to much, just make sure her meds go down, that she's fed and that she gets lots of cuddles. Sounds all so simple, nothing high tech or risky or that requires a massive amount of thinking or physical effort. But for some reason that I haven't yet put my finger on Kay's care takes all of our energy.

Tuesday evening she threw up her feeding tube, before she'd had her meds. Thus we had to wait for the HomeHelp to refit the tube. Then we could give her her meds and then her feed. Because of her weight loss, we're now putting 1 litre per night into her, which is two packets of food. On Tuesday I was less tired than Marion so I stayed up to hang the second package. Got to bed at 1.30am. In theory no problem. But yesterday I was practically drunk the whole day from fatigue. I went to bed early, leaving the late feed to Marion. But I woke at 2.30am and was then awake for a long time. Got out of bed three times to Kay, once because I thought I heard her call, once because she did call and needed a pee and once because the feed pump gave an alarm and needed sorting.

Today Kay gets a blood transfusion. We needed to be at the hospital (Eindhoven, luckily) by 10am, so there was no hanging around in bed. First meds, then prepare for a day at the hospital, etc. At the moment my battery is completely flat. I can feel that I'm at the edge of my endurance, so I plan to take it easy for the next few days - at least in theory. There's no room in all of this for a sick parent. I have to say though that I'm worried about next week: it's a heavy chemo week and we'll be without help at home - Marion's wonderful Aunt & Uncle who have been living in our house for the last two weeks will be on holiday. We'll have to see how that goes.

I have to say that I'm so impressed with the way that Kay is dealing with everything. She's a damned tough kid. Her weakness is removing plasters, that's something that she hates and kicks up a fuss about. However her social-emotional intelligence, if one calls it that, is amazing. She just sat here and had a long chat with one of the child social workers, telling her everything about how she feels and about her worries, etc. Mentally, I'm convinced that she's dealing with the situation incredibly well. I wish I felt that I was doing as well.

She's now getting the blood, which will take a few hours. So we're planning some quiet time for the rest of the afternoon.

BTW, the Slingbox is brilliant. We sat here this morning watching Sky from home on my laptop - amazing.

This evening...

...as we were putting Kay to bed she said to Marion, "Mama, I want to talk to you about something tomorrow." Marion says, "What do you want to talk about?". Kay, "About dying at home".

I can barely see the screen through my tears.

Light at the end of the tunnel is the next train coming...

Over dinner this evening Marion put her finger on one of my/our base feelings: the sense of unfairness that this kind of thing has to happen to us, again. It started for me with divorce and since then life seems to have been one long story of tunnels, lights and trains. A few weeks ago I had an errant thought: could it be that after all these years we could emerge from the tunnel into light?

It certainly seems that things are starting to go well with the last tunnel: Verum. After six years of hard work it is likely that Verum will shortly be able to sustain itself. Beyond that the growth curves look good. And now this, the light of a cash-flow positive business turns out to be the next leukemia train coming. We're going to remain in the tunnel for at least the next two years, if we're lucky. There are people who live their lives without tunnels, lights or trains. How come? And when will we have earned the right to join this elite and fortunate group?

Emotions

Marion remarked that my blog is rather too factual. She says that her emails are written from the heart, that once written she doesn't re-read them and that writing them represents a kind of emotional release for her. She's encouraging me to do the same thing. However my emotions are such a raging torrent that I'm not sure that I can even begin to put them down in words and if I did I think the result would be enough to have me locked away in a padded cell for time eternal. Plus, along the way I'm sure that I would bruise a lot of people's feelings, specifically in the area of God/non-God. But you can be sure that I'm going to be re-reading Dawkins when I get out of here.

I'm angry. That's for sure. (Reminds me of Richard Gere in the film "Pretty Woman"). I'm also extremely frustrated. Partially because there's no-one/nothing to vent my anger at. Occams Razor dictates that this situation is just bad luck and there's nothing to blame except for the faceless winds of fate. But still, the desire to rail against someone or something is overwhelming, almost enough to make it worthing believing in a deity and then blaming them. I can understand how religions get founded.

I'm scared. Unsurprising. What is surprising is that I'm more scared than last time. My explanation for this is that last time Kay was a baby. This time she's a full blown unique person who has carved out her place in our lives. Last time I was worried about losing the 'potential' of Kay, if you like. This time I'm worried about losing the actuality. And here I run out of words, I leave it to your imagination.

I'm worried. Last time was was very hard on the family and on Marion & I in particular. Our relationship hasn't recovered from the last time, when it was tested to the max. And this time the situation is more complex. Last time were sitting on a pile of money and had no other critical obligations. This time we have Verum to deal with as well. Will we be able to deal with everything that will come our way without tearing each other to bits in the process?

And this is all just the tip of the iceberg. As I read it back, I realize that I've not really done what Marion said, this is still a collection of facts and not really how I feel. But I can't actually begin to describe how I feel and I don't want to, it would be like kicking Mount Vesuvius.

So, do I feel better for having written this? No, not really. I'm kind of aware of the landscape of my feelings anyway, which is all that I've described here. Writing it down has brought the landscape slightly better into focus, but that's all. I'll have to think about whether to post this entry. Who wants to read this stuff anyway?

Mixed feelings

It's great that Kay will be able to come so soon. I hope that the dramatic drop in her white cell count bodes well for the future. But of course this question belongs in that forbidden zone of questions-that-relate-to-survival-chances. These are questions that patients/parents want to, but shouldn't, ask and Doctors don't want to answer because they actually have no meaning.

Last time that Kay was sick her type of leukemia had a cure rate of 85% and for the last 5 years we have smilingly believed that we were a member of the 85% club. How wrong we were, apparently. So practically speaking the answer to all survival questions is digital: you're cured or you're not. But even if you are, maybe you're not. And if you're not, you definitely aren't. So don't bother asking, the answer is not useful.

Going home so quickly worries me. We've barely got our heads around the idea that we have a seriously sick child in hospital before we have to get used to the idea that we'll have a seriously sick child at home. Of course there are very many advantages to being at home, but I'm very worried about how Marion and I will cope with being not only being employees and very worried parents, but also practically full time nurses and drivers. I haven't thought it through yet, mostly because I'm so tired that I can barely remember my own name, but I have no idea what having Kay at home will imply for us. Will it actually make life easier? Or what? I guess that we'll have to wait and see.

Complaint - 3G Internet

In normal life I use my KPN mobile internet connection infrequently. But when I have used it, I had the feeling that the practical available bandwidth was rubbish.

The last days I've been using it intensively. In theory my subscription & hardware will support 7 mbps. However, the maximum that I've seen is about 1 - 1.2 mbps and that only in bursts. The problem I suppose is signal strength, I've yet to find any location where I get more than about 2 bars of signal.

My conclusion is that in all practical circumstances 3G internet is useless for anything except email and the odd small file transfer. Bring on WiMax, I say.

Wonderful things you'd rather not know about

I have to say that the Radbout hospital is brilliant. The staff are super, friendly, professional, kind and caring. The department is obviously well organized and well run. Everything is neat and well cared for. Considering that we're in a hospital, we're quite comfortable - none of the heat that we had last time.

Not only that, effectively we have walked straight in off the street and in no time at all we're are the recipients of some of the most technically sophisticated medicine around given by leading experts. I couldn't imagine being more fortunate under the circumstances.

We also have a room in the local Ronald McDonald house. I have to say that I'm completely stunned by the quality of this accomodation, it's around the four - five star level. Again, staffed by friendly volunteers. I guess that if one has to live a disaster one might as well do it comfortably.

Waiting to wake up

The India trip was intense. Leon & I were working flat out for a week and then got on the flight home last Monday night. I don't sleep well on planes, so inspite of being tired and it being 1am when the flight left, I took a sleeping tablet. Obviously I over did it and I've fallen rather too deeply asleep. Everything certainly does have that glassy unreal look about it and nothing makes any kind of sense. I hope that I'll wake up soon, the flight back from India isn't that long. But then I read somewhere that even long dreams occupy very little real time. So I guess that it could go on for a while. Still, I have the satisfaction of knowing that when I do wake up everything will be back to normal and the stewardess will be handing out those kinda half-warm wet towels and serving omelette that was cooked in the last centuary. Or was it half warm omelettes and wet towels that were cooked in the last centuary? I don't know, nothing makes sense in dreams...

The end of another day

The last days have been tough. I don't intend to air my emotions in a blog- I'm sure they would scare you off reading anything else I may write. But without plumming the depths, I can say that so far Friday was my worst day. Taking Kay into the operating theatre and talking her into sleep was an experience that I had on day two the first time around and swore blind I'd never do again. Never say never - I did the same thing on Friday and it was worse, took me to the edge of reason.

I have the feeling that of us all, Kay is dealing with it best. This evening I had a long talk with Natasha on the way back from the hospital and asked her how she feels. Her answer was that she doesn't feel anything so far. But she's very observant and is beginning to understand what is going on. I'll talk to Lauren when she gets home this week.

My impression is that Marion is dealing with it better than I am. She is very emotional and openly so, except when she is with Kay. In a sense I feel that Marion's ability to give rein to her emotions, even to a limited extent, is a sign that she's coming to terms with them.

I dare not give my emotions a millimetre of freedom. They're raging so strongly that, like a dam, the smallest leak is likely to result in a catastrophic flood. So I'm doing what I normally do in these circumstances, locking the emotions down, dealing with the reality and facts of the situation, and waiting until I'm calmer and more able to deal with how I feel. So please, if you think that I'm being distant or cool, understand that this is not because I don't feel any emotions but rather the exact opposite: my emotions are so strong that they would incapacitate me if given rein and this I cannot allow right now. There are a lot of people depending on me to carry on functioning.

More thanks...

This time to Armin van Buuren and Faithless for my high energy workout on the cross trainer this afternoon. Both speakers are still trembling and the cross trainer is wondering what hit it. Only got in 35 mins before having to move on, but it has helped me feel a bit better. Could do with some kind of marathon session or a long bike ride or beating up on my MTB for a couple of hours.

I don't know what I'd do without a ready supply of music right now. iPhone rules again.

Weird freedom

The hospital requires us to remove our (wedding) rings for hygene reasons. I'll have to remember that excuse in future: "you're back late, aren't you? And where's your ring?". "Er, oh yes, er, yeh, I had to take it off for hygene reasons, dear".

Techno Family Howe (The Rise of the iPod/iPhone)

Things have certainly changed technologically since the last time we were confined to an isolation room. I had to use a phone line to get an internet connection and nobody had heard of an iPod/iPhone.

Now we're camping in a room of 3x4 metres with three laptops, two iPhones and an iPod touch. No shortage of communication media, then. Kay is currently plugged into her (new) iPod touch, which I have packed with 22GB of music and films, namely the entire "Lord of the Rings" trilogy.

I have recently opened a Facebook account so I can keep in touch with Lauren and other far flung folk. Now I have added Windows Live Messenger, since only the older folks seem to rely on Skype. And of course we also have our Blogspot. Keeping track of all this is going to become a nightmare, I suppose. This leads me to wonder if there's not a business case for a meta-website that organizes all the information spread across the others. However, to be honest I don't know what the business case is for any of the mentioned sites anyway - how can people make money out of all this free stuff?

For some time I've been looking for a reason to buy a Slingbox. The idea of being able to stream Sky HD to my iPhone or Laptop wherever I am sounds great. But frankly, "wherever I am" is mostly at home - at least when I have time to watch TV, so not much point in a Slingbox. But being confined to an isolation room has given enough reason, so I've ordered a Slingbox Pro from Amazon. Playing with a new gadget is always a useful distraction from daily matters, so I'm looking forward to setting it up and trying it out. You can imagine that Kay & I will be sitting here watching mid-afternoon reruns of "Midsomer Murders" or "Tom & Jerry" by the middle of the week. Great! (if it works).

Last time Kay was sick, digital cameras had only just started to become reasonably good. We have loads of film photos of her from that period, but I bought a decent digital camera back then and so the photos that we look at are all the digital ones - can't remember ever having seen the film ones. Now of course we have the cameras in two iPhones, my Canon 50D, Marion's Canon G6 and Kay's Canon something or other. So you can expect to be buried in photos and low grade iPhone video. If I feel as though we don't have enough consumer technology here, I'll bring in my HD video camera!

Rob.

Sleep and Tiesto

I have to thank Tiesto for the album "Just Be". I have listened to it over and again during the last days, especially when trying to relax or get to sleep. On Thursday night, struggling to find peace of mind I put "Just Be" on and allowed myself to enveloped in this beautiful music. In no time at all I drifted away to sleep...

Daddy's View

Welcome to Kay's Daddy's leukemia blog. I'll use this for posting my view of Kay's treatment.