T -9, T -8 Step Change
We've missed a day of posting for the first time. This is down to several factors. Not being able to access the internet from our room was one, but I've sorted that one out now, so we should be a bit quicker replying to emails and messages now. (Best address to mail on is mwoolley13@aol.com )
There were a couple of other reasons though.
The pace of life is furiously fast. I guess the day to day things will settle down into a routine (they already are slowly, to be honest). These are things like the hand washing, bed changing, oral care, moisturising, hand washing, sterilising, bottle preparation, hand washing, skin care and stock taking of in-room essentials. You have to remember to wash hands a lot, too. In addition, you (as well as everyone else) have to put a plastic apron on when entering the room and remove it when leaving. One of the drugs has also upset Saffy's stomach, making her have very frequent and rather difficult bowel movements. Each time this happens, you have to put disposable gloves on (this is to protect you from chemo drugs as they are passed out of the gut and bladder) and the use of bed pans, saving of nappies, hand washing etc all takes a certain amount of time. At one point yesterday morning, that was all we did for about an hour - by the time I finished, she started again. On one particularly fun occasion, she started again before I'd finished. She had been in knickers until then, but seemed actually to resign herself to the fact that that wasn't working and graciously agreed to compromise on pull-ups after she'd seen me throw about 10 pairs of M&S briefs away. I think I developed a new level of respect for my daughter at that moment.
Anyway, enough of toilet matters. We started another chemo drug today - Campath. This is quite a nasty one, infused into the blood through the Hickman line over about 8 hours from a drip. Possible side-effects are high temperature, rashes, nausea and convulsions, so she gets a premed of paracetamol, piriton, pethidine* amongst other things. This controlled all of these symptoms effectively, as well as knocking Saff out for part of the day. She was fantastic about staying in bed most of the day and having tens of syringes-full of drugs through her line and orally. She is still on Busulphan until tomorrow as well, so was nil by mouth for 2 1/2 hrs for each dose, so she had a lot to put up with today. The consultant says she absorbs Busulphan at a perfect 'moderate' rate, too. That's my girl.
Sonja is staying in tonight - the rota seems to be working out well and giving us time with Saff and Reuben without them missing us too much or getting too jealous so far. Early days, but fingers crossed. Touchingly, they seem to be genuinely missing each other. Reuben wanted to know how they got her 'wiggly lines' out of her chest. I explained it while he was in the bath tonight and he thought it was brilliantly gross - I expect all the boys in class 1A will have heard about it by lunchtime tomorrow. (He doesn't talk to girls. Except Lizzie, but that's a different story...)
We also met a play specialist, who'll buy new toys for Saff based on what I told her she likes playing, a dietician, who'll stop by tomorrow to discuss favourite foods for her when she moves onto green precautions on Thursday and gets all of her meals specially prepared - she will try and give Saff a diet of favourites to keep her eating when she starts to feel worse. We even had a clown, who, even though she couldn't come into the room, did magic tricks and funnies for Saff through her window onto the corridor, which went down a treat. She's also had grandparents, aunts and uncles in recently, so she's feeling quite at home just now. It may change when she's on green precautions and no one is allowed in, but we'll cross that bridge...
Sorry - bit of an essay this time. Two days' worth!
Thanks so much for the messages, though. Now we can pick them up in the room when we're together, it's even nicer to hear from you all, so do keep posting messages, gossip, jokes whatever and let anyone we haven't told have the address.
Cheers
Martin
*It's the one they can give at childbirth - that's why it rings a bell
There were a couple of other reasons though.
The pace of life is furiously fast. I guess the day to day things will settle down into a routine (they already are slowly, to be honest). These are things like the hand washing, bed changing, oral care, moisturising, hand washing, sterilising, bottle preparation, hand washing, skin care and stock taking of in-room essentials. You have to remember to wash hands a lot, too. In addition, you (as well as everyone else) have to put a plastic apron on when entering the room and remove it when leaving. One of the drugs has also upset Saffy's stomach, making her have very frequent and rather difficult bowel movements. Each time this happens, you have to put disposable gloves on (this is to protect you from chemo drugs as they are passed out of the gut and bladder) and the use of bed pans, saving of nappies, hand washing etc all takes a certain amount of time. At one point yesterday morning, that was all we did for about an hour - by the time I finished, she started again. On one particularly fun occasion, she started again before I'd finished. She had been in knickers until then, but seemed actually to resign herself to the fact that that wasn't working and graciously agreed to compromise on pull-ups after she'd seen me throw about 10 pairs of M&S briefs away. I think I developed a new level of respect for my daughter at that moment.
Anyway, enough of toilet matters. We started another chemo drug today - Campath. This is quite a nasty one, infused into the blood through the Hickman line over about 8 hours from a drip. Possible side-effects are high temperature, rashes, nausea and convulsions, so she gets a premed of paracetamol, piriton, pethidine* amongst other things. This controlled all of these symptoms effectively, as well as knocking Saff out for part of the day. She was fantastic about staying in bed most of the day and having tens of syringes-full of drugs through her line and orally. She is still on Busulphan until tomorrow as well, so was nil by mouth for 2 1/2 hrs for each dose, so she had a lot to put up with today. The consultant says she absorbs Busulphan at a perfect 'moderate' rate, too. That's my girl.
Sonja is staying in tonight - the rota seems to be working out well and giving us time with Saff and Reuben without them missing us too much or getting too jealous so far. Early days, but fingers crossed. Touchingly, they seem to be genuinely missing each other. Reuben wanted to know how they got her 'wiggly lines' out of her chest. I explained it while he was in the bath tonight and he thought it was brilliantly gross - I expect all the boys in class 1A will have heard about it by lunchtime tomorrow. (He doesn't talk to girls. Except Lizzie, but that's a different story...)
We also met a play specialist, who'll buy new toys for Saff based on what I told her she likes playing, a dietician, who'll stop by tomorrow to discuss favourite foods for her when she moves onto green precautions on Thursday and gets all of her meals specially prepared - she will try and give Saff a diet of favourites to keep her eating when she starts to feel worse. We even had a clown, who, even though she couldn't come into the room, did magic tricks and funnies for Saff through her window onto the corridor, which went down a treat. She's also had grandparents, aunts and uncles in recently, so she's feeling quite at home just now. It may change when she's on green precautions and no one is allowed in, but we'll cross that bridge...
Sorry - bit of an essay this time. Two days' worth!
Thanks so much for the messages, though. Now we can pick them up in the room when we're together, it's even nicer to hear from you all, so do keep posting messages, gossip, jokes whatever and let anyone we haven't told have the address.
Cheers
Martin
*It's the one they can give at childbirth - that's why it rings a bell
posted by Saffron Woolley @ 9:00 PM
1 Comments:
At 3:56 AM,
Anonymous said…
Martin,
Well, I've learned one great lesson so far: wash your hands before, during, after and in-between meals. Then wash them again! I think I've got it now!
The blog seems to be doing very nicely, in spite of the need to stay focused on more important things (don't forget to wash those hands...). I know there will be stretches when, despite what routine you think you might eventually settle in, it's just too much to keep up with on a consistent basis. Don't worry about your poor readers, though, just keep little Saffy happy and cared for (no doubt at all that that wouldn't be the case).
So, gossip and jokes is it you want? How about this one:
Q: Why was 6 afraid of 7?
A: Because 789!
On a serious note: today I bought a house and we will be moving in about two weeks. Taryn and Debbie are both thrilled, as am I. I'll email you the details later.
Hi Sonja, Hi Saffy, Hey Reuben
Cheerio...
Paul
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