Joe's chemo drugs, in order of how obnoxious we thought they were to him (or made him):
Doxyrubicin (it even looks obnoxious: it's bright orange)
Dexamethazone
Vincristine
Cyclophosphamide
Cytarabine
Methotrexate
Mercaptopurine
Joe's side-effect drugs:
Corsodyll (wow that stuff is disgusting)
Allopurinol
Ondansetron
Rinitadine
Listerine (replaced the corsodyll and, incredibly, was still the thing we had most trouble getting Joe to take!)
Heprin
Lactulose
Co-trimazole
Various anti-biotics and anti-fungal stuff on drips in hospital
Blimey. When you write it all down it's quite a list.
The Ondansetron sounds to me like a machine from Barbarella. Do any of them remind you of anything?
Monday, February 26, 2007
Perspectives
I 've taken down the last post, containing the very explicit photos of Joe and his various bits and bobs of treatment stuff. I hadn't really thought about much more than how I feel about it all, and what I can do to get the family through it. And, of course, to include friends and family so they could know what's going on. I hadn't thought how others might feel about it all.
And that's how I came to take down the post. At first I thought that it was censorship: that I was not allowed to show pictures. But it wasn't that. After all, there have been plenty of photos and some of them have been a laugh.
Then I thought it was shame. We can't be ashamed of how Joe looks, I thought. We should be proud. Maybe I was being proud in putting the photos up. It's not exactly something to be proud of. OK then, at least not ashamed. But it's not that either. We don't hide his shiny head when we go out. We don't lower our voices to a whisper to say the L word.
And it wasn't disgust either. The only time I feel anything approaching that is when I see photos of Joe fit and well. Lou has one of him and Jack at the start of treatment, and he looks healthy and handsome. And it's true, he was. But most of the time I see him as he is and I don't think anything of it, and he is healthy and handsome (no, seriously, he feels that way to me) except when I see what he was like before and then I just feel a bit melancholy. Anyway, he's obviously going to turn out handsome: heredity is a powerful force.
It turned out that it's pain. It just hurts Sue to look at him in pain or somehow disfigured and uncomfortable. To experience his mood swings and to think that this could be him. And the photos remind her of that. And maybe, in a small way, there is a little mumbo-jumbo: the more people who see him like this, the more like this he somehow is.
I hadn't thought about how other people feel about Joe's illness. I thought they fell into two camps: the ones who look after him, (which include me and who therefore, by my own limited emotional logic, all feel the same as I do), and the ones who want to know how he is and are sympathetic and concerned and interested. But it's much more complicated, because all those people who I thought felt just like me, well, they don't necessarily.
Yes, I know, Welcome to the world. And Duh, obviously. etc
It just wasn't obvious to me. It was a bit of a surprise. I just thought about how I felt and what I wanted to do. I think it's the teacher in me trying to teach everyone about it all.
And that's how I came to take down the post. At first I thought that it was censorship: that I was not allowed to show pictures. But it wasn't that. After all, there have been plenty of photos and some of them have been a laugh.
Then I thought it was shame. We can't be ashamed of how Joe looks, I thought. We should be proud. Maybe I was being proud in putting the photos up. It's not exactly something to be proud of. OK then, at least not ashamed. But it's not that either. We don't hide his shiny head when we go out. We don't lower our voices to a whisper to say the L word.
And it wasn't disgust either. The only time I feel anything approaching that is when I see photos of Joe fit and well. Lou has one of him and Jack at the start of treatment, and he looks healthy and handsome. And it's true, he was. But most of the time I see him as he is and I don't think anything of it, and he is healthy and handsome (no, seriously, he feels that way to me) except when I see what he was like before and then I just feel a bit melancholy. Anyway, he's obviously going to turn out handsome: heredity is a powerful force.
It turned out that it's pain. It just hurts Sue to look at him in pain or somehow disfigured and uncomfortable. To experience his mood swings and to think that this could be him. And the photos remind her of that. And maybe, in a small way, there is a little mumbo-jumbo: the more people who see him like this, the more like this he somehow is.
I hadn't thought about how other people feel about Joe's illness. I thought they fell into two camps: the ones who look after him, (which include me and who therefore, by my own limited emotional logic, all feel the same as I do), and the ones who want to know how he is and are sympathetic and concerned and interested. But it's much more complicated, because all those people who I thought felt just like me, well, they don't necessarily.
Yes, I know, Welcome to the world. And Duh, obviously. etc
It just wasn't obvious to me. It was a bit of a surprise. I just thought about how I felt and what I wanted to do. I think it's the teacher in me trying to teach everyone about it all.
Thursday, February 22, 2007
An update with no real title
I'm sorry I haven't written for ages. It's hard to fit everything in. Going back to work really flattened me, but even during half term I couldn't find the time. These things build up, and the more they build up, the more you put them off, and the more you put them off, the more they build up, and so on. It's like emptying the compost only not as smelly.
Joe has been quite poorly, quite well and also very well, and it's all very interesting, a bit sad and sometimes quite funny.
His boot things that he has to sleep in are really scratchy anyway, and then they have loads of velcro stuck on. He is not pleasant to share a bed with. They were newly and snugly fitted in January, and you can fit 5 fingers down between the sides and his leg. The muscle just vanished with the treatment.
His hair fell out again too.
But that meant he could have a tattoo on his head.
He's got his "Wiggly" or Hickmans Line in now, and it's pretty gross to look at without the dressing. It just emerges from his chest or from under the enormous white sticky plaster that covers the exit site. It's white and tubey. Largely, I suppose, because it's a white tube. And it has some clips on it to stop stuff coming out or in most of the time. And special bungs on the end to plug syringes into. I find it intriguing in a kind of rubber-necky, voyeury, bravado-showing, horror-movie, behind-the-sofa-Dr-Who-watching kind of way. That's to say I know it's gross, it freaks me out and I have to give him a long hug after I've changed the dressing, but I can't help but look and want to show I can do it without being scared, even though I am scared.
It goes up his chest below the skin, and into a vein in his neck, then down the vein. You can see the scar on his neck, and there's a white bit where you can just see the line rising like a white tendon and going into the vein. It's not visible anywhere else, only there.
During the treatment Joe's blood counts dropped and he got a brief temperature, which is enough to see you into hospital for 48 hours, plus the 4 it takes to lose and find your records before discharging you (well done NNUH: they did the same for Sue when she was in).
He was on the steroids and he went a bit food crazy again. Here he is making a shopping/meal list when he got home. It was pretty much the only time he stopped talking about food(well, ranting is a better verb, and many might say banging on, or obsessing, or moaning: I expect you get the picture - thank goodness he doesn't talk in his sleep - it might have been more than we could bear). See if you can read what he was into eating this time. His writing is getting very good.
He can have a bath and all that, but the line has to be covered up with sticky dressing. It's very peculiar putting on gloves to touch your child. Not, I accept, as peculiar as the white tube I'm trying to coil up and cover where it disappears into his chest.
It took a few days before half term, but once he had settled down from his hospital stay and finished his steroid course, he settled right down. In so far as a 5-year-old can settle right down...
You should see him on his bike too. Standing up in the seat to pedal and sticking his little backside out so that he can go faster. It's doing his legs a power of good. And us too.
Joe has been quite poorly, quite well and also very well, and it's all very interesting, a bit sad and sometimes quite funny.
His boot things that he has to sleep in are really scratchy anyway, and then they have loads of velcro stuck on. He is not pleasant to share a bed with. They were newly and snugly fitted in January, and you can fit 5 fingers down between the sides and his leg. The muscle just vanished with the treatment.
His hair fell out again too.
But that meant he could have a tattoo on his head.
He's got his "Wiggly" or Hickmans Line in now, and it's pretty gross to look at without the dressing. It just emerges from his chest or from under the enormous white sticky plaster that covers the exit site. It's white and tubey. Largely, I suppose, because it's a white tube. And it has some clips on it to stop stuff coming out or in most of the time. And special bungs on the end to plug syringes into. I find it intriguing in a kind of rubber-necky, voyeury, bravado-showing, horror-movie, behind-the-sofa-Dr-Who-watching kind of way. That's to say I know it's gross, it freaks me out and I have to give him a long hug after I've changed the dressing, but I can't help but look and want to show I can do it without being scared, even though I am scared.
It goes up his chest below the skin, and into a vein in his neck, then down the vein. You can see the scar on his neck, and there's a white bit where you can just see the line rising like a white tendon and going into the vein. It's not visible anywhere else, only there.
During the treatment Joe's blood counts dropped and he got a brief temperature, which is enough to see you into hospital for 48 hours, plus the 4 it takes to lose and find your records before discharging you (well done NNUH: they did the same for Sue when she was in).
He was on the steroids and he went a bit food crazy again. Here he is making a shopping/meal list when he got home. It was pretty much the only time he stopped talking about food(well, ranting is a better verb, and many might say banging on, or obsessing, or moaning: I expect you get the picture - thank goodness he doesn't talk in his sleep - it might have been more than we could bear). See if you can read what he was into eating this time. His writing is getting very good.
 |
He can have a bath and all that, but the line has to be covered up with sticky dressing. It's very peculiar putting on gloves to touch your child. Not, I accept, as peculiar as the white tube I'm trying to coil up and cover where it disappears into his chest.
 |
| From Photos of Joe |
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