7:00: Today started early (again). I've been awake from about 5am, fully awake but trying to find sleep again (and failing) since 6am. At 6:45 I got up to get a cup of tea and continue working on rebuilding my laptop while it's still quiet (ha!). At 7:00 the night nurse comes in to do her final check on Kay and asks me if she should leave the NG feed running or not. Since we have currently given up trying to get Kay to eat anything, I told her to let it run. Kay woke up around 7.15 saying that she couldn't sleep anymore. She tells me that she can only sleep on her tummy or with the covers over her head. I say that I have the same thing, that there's too much light in the room and one feels so exposed lying in bed. Kay agrees. I ask if she wants the radio on, she says yes. So we have a nice start-the-day cuddle listening to Radio 10 Gold.
8:00: I sit back down with my laptop and start a backup running, then check my email. While I'm doing this, Kay falls asleep again. So much for not being able to sleep anymore. Leonie, our day nurse, comes in to check Kay at the start of her shift. We have a chat about how much Kay is sleeping and Leonie tells me that it's also a side effect of the radiotherapy. She says that they get teenage patients who just sleep the whole time. I think about Lauren and start to wonder if she's been sneeking away for sunbed sessions under a gamma ray generator. Leonie asks if there's anything she can do for us, but we're OK. Time for another cup of tea and breakfast. The breakfast provided for parents is truly terrible so I have a couple of raisin buns to eat. Missing some juice though, but yeh, shortcomings of the Hotel Paediatric Oncology.
8:30: I decide to get dressed and change the room from its night to its day configuration. This involves stripping the parent camp bed and thoroughly washing it, the mattress and the pillow. The sheets/covers can only be used once and then have to go into the wash. Expensive. The bed ends up being stored in the bathroom and the chairs & tables moved around for day use. After this I head to the McD parents room for breakfast - we're not allowed to eat in Kay's room. I have a superficial chat with the father of the boy from two rooms further along. His son received his transplant two days ago, from a Dutch donor interestingly enough. We discuss the advantages of blog communication - his son runs his own blog. Both of us avoid talking about anything more substantial. When I get back to the room, Kay is still asleep.
9:00: Big day, today. My Apple iPad will arrive from the US, arranged for me by my good friend Ron (thanks, Ron!). I have been counting down the minutes (maybe this is why I've not been sleeping?) until it arrives. Get on the Fedex tracking site and see that the package is at Veldhoven and will be delivered before 12pm. Another gadget to keep me occupied. I guess that by now there's more computing power in this room and in a average African nation. The alarm on my iPhone goes off to remind me that it's time for Kay to clean her teeth. But she's still sound asleep, so that will have to wait a little while. Not much else to do right now, so it's back to fixing my laptop.
9:50: Kay wakes up, again. This time it seems like she's here to stay. For a while I'm busy seeing if she wants anything but she's not interested in eating or drinking. She picks up her laptop and starts looking at something that Frank sent her. Around 10:20 she reminds me that she needs to clean her teeth - see, the alarm does have some function. Leonie comes back in to check whether Kay needs anything but also gets a negative answer. I'm trying to get MS Office downloaded from the office to my laptop so that I can install it (again). A new check of the Fedex tracking site says that my package has left Veldhoven and will be delivered on time, before 12pm, thus. I get myself involved in a email conversation with the office and for a while time passes quickly.
11:00: I'm in need of a shower and a change of clothes so I tell Kay that I'm off to the McD House. Mama is cooking there and will be along shortly. Kay's still on her laptop and barely acknowledges my departure. I find Leonie and tell her I'm off for a shower and that Kay will be on her own for a while. The only thing on the medical menu for the day is a visit from the Physio. Blood counts are only done on Monday, Wednesday and Friday, so there's no transfusion likely today. I get to the McD house, make a cuppa and then Fedex turns up. So I spend the next 2 hours showering, having lunch and messing around with my iPad, not necessarily in that order...
14:00: I head back to Kay's room, Marion is already there. She tells me that the word from the staff is that they no longer expect Kay to develop ulceration problems in her mouth, etc. Oma has arrived for a surprise visit and is sitting on the bed with Kay playing some kind of word game. Kay is much more awake and active than yesterday. Marion is very taken with the iPad. But as yet I have no 3G connection for it and it really needs a network connection to work to full effect. As I carry on messing, Jolanda and her son, Kay's friend Joep, turn up for a visit. Not long after that some friends of Oma's turn up and the room is getting rather too crowded. I start fretting that it's too crowded for Kay's safety so after a while I offer to leave. But Oma's already planning to leave with her friends and Marion & Jolanda decide to retreat to the girls gossip corner. I'm left with the kids who promptly set about keeping themselves busy with various games. Leonie comes in to check out if Kay is OK and fixes up drinks for the kids. They are flat out busy with Room Hockey and the ball is flying everywhere when the Physio sticks her head in the door. She comments that she's obviously not needed here today and say's she'll see Kay next week. Rather a rapid and convenient conclusion in my opinion. In amongst all this the cleaner decides to start cleaning Kay's room. There seems to be some rule that he's not allowed to move anything and since there's stuff all over the place, I tidy up. Otherwise he's going to work to no significant effect. Even so I have to point out to him that he missed cleaning under Kay's bed.
16:30: All visitors have departed and things have returned to "normal". Kay feels a bit tired but wants to play a game with Marion. I'm using the Kindle application on the iPad to carry on reading my book but just on different hardware than yesterday. But I don't think that the iPad is a replacement for Amazon's Kindle: the Kindle is much lighter, easier on the eyes for reading and has much better battery life. At 5pm Kay is tired so she and Marion flop on the bed and on goes the TV. Marion says in her Command Tone,"Rob!". I dully respond, my perennial response to the Command Tone. "How about a glass?", referring to our daily oral hygene ritual using chilled flavoured alcohol that we import ourselves. I point out that it's too early by an hour. Marion grumbles something about me being a boring sod. Or maybe I just made that up. I don't know.
17:30: Hmmmm... a nurse we had never seen before comes in to give Kay her evening meds. While she was doing this, all of a sudden Kay creases up in pain and starts crying, breaks out in a sweat. The nurse has blithely dumped the contents of one of the syringes into Kay's line, something that, based on past experience, *everyone* should know causes Kay considerable pain. Marion complains to the nurse and I point out that we've mentioned this 20 times. Marion says that it's even in Kay's case notes. Nurse steps over it, obviously we're just moaning parents. I take an instant dislike to this woman. Hopefully it's the last time that we see her. 17:50, still ten minutes to go until we can open the mouthwash.
18:30: Mouthwash ritual in progress, evening looks a little brighter. Marion heads off to warm up the food that she cooked earlier at the McD house. Kay's not eating. I'm well into a Val Mcdermid book, on the iPad. I finished Diane's "The Bay at Midnight" a couple of days ago. I have been tasked to bring full containers of mouthwash to the McD parents room - it's important not to complete this hygene treatment without food in one's stomach. While we're sitting eating the mother of the BMT girl three doors away comes in. Marion switches into social interrogation mode, I don't want to know, (Hasn't she learnt anything?). I try to focus on "The Weakest Link", but I can't decide what I hate more, Ann whats-her-name-with-the-dreadful-wink or ward gossip. I get back to the room at 19:15 after hearing all about the election, Brown, Cameron and that other guy, which is even more boring and predictable than a day locked up with a sleeping Kay. Kay is in a playful mood, sticks her tongue out at me which is a challenge to a tickle-attack. Then, after having been thoroughly tickled, starts sending me SMS's from Marion's phone, "I love you".
19:45: Time to Skype with Nattie. We take turns in asking Nattie about her day and making arrangements to pick her up tomorrow.
20:15: I pack up my stuff and head back to the McD house for the relative comfort of the beds there. Marion is complaining that there's nothing on TV. So, what's new? Kay is threatening to call me on the phone early tomorrow, monkey. Marion's pestering me to tell her what I'm going to do this evening, a type of question that I avoid answering because an answer is then usually followed by a bunch of comment. My plan is to connect my new Sony Z1 Core i7 SSD laptop up via the HDMI cable to the huge screen Philips TV in the McD lounge and watch last weekend's Doctor Who episode either via the Slingbox from home or via a fudged connection to the BBC's iPlayer. While messing around with my iPad. Gadget heaven. So you can imagine the kind of comment that I'd get if I said this to Marion. But now she's thinking I'm off out on the town, chasing skirt or something equally devilish. She really doesn't know what kind of boring old sod I am. When I get back there's two couch-potato fathers slumped in front of the TV watching Big Brother or something equally banal. There goes my evening... Now, what was that other idea? Oh yeh, iPad.
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Before any criticism is levelled at you about your gadget addiction, take some time to read Stephen Fry's blog, it will reassure you:
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Stephen is, as you know, the one time partner and good friend of your hero, Dr. House... I mean Hugh Laurie.
The extent of Stephen Fry's gadget addiction is perhaps somewhat surprising at first view. He collects not only Apple stuff, but likes to experiment with Blackberrys and Android etc. (By the way, I suppose the plural of Blackberry, the phone, is 'Blackberrys' and not 'Blackberries').
We should also remember that Stephen Fry was a very good friend of Douglas Adams (Hitchhikers Guide to the Galaxy) and that they shared a passion for gadgets and technology.
These two men (and perhaps even Hugh Laurie) are very close to genius, I would say. I think that this obsession is not such a bad thing. Especially for someone like you who works with technology, it's not exactly irrelevant to what you do and what you're supposed to know about.
I think we are at an exciting moment with some of these technologies. To many in the field this is not new: we had the Web and Web 2.0, but what we are finding now is that the technology is becoming available to more people, easier to use and stable.
The iPhone is the first piece of technology that I find close to magic. I continue to have experiences with it that make me excited. Yesterday it was in the middle of a conference room, with the ringer on my phone turned off. I got an email from a colleague in Germany asking me to review some slides (nothing too techie about that bit). I immediately sent an invitation through the Webex App to join me online for a video conference, and asked the colleague to present the slides to me, real time. We 'chatted' in a text window as we previewed the work together. All this, while I had one eye on the stage and the somewhat irrelevant panel debate. Amazing - I can be working and interacting with colleagues anywhere.
Arthur C Clarke's comment was that magic is just technology too advanced for us to understand it. We're coming close to that with some of these applications. This would have been very exciting to Douglas Adams (had he still been here) and it is clearly so to his friend, Stephen Fry. And it is to you also. Nothing strange there, just intelligent, creative men with enquiring minds, motivated to believe in the best that mankind can do.
There's a great country and western song (can't remember who it's by) called It's 5 o'clock Somewhere. Sometimes that's the attitude to have!
ReplyDeleteLesley
(I only select the anonymous profile cos I don't understand the others)