28 - 3 - 19
Half way !!!!!
He had his half way chemo day yesterday. That was a milestone we were really happy about. 5.30am start, home at 6.10pm.
tick tock back in time . . . . . He went downhill on the weekend, suddenly. He woke up on Sunday unable to eat, swallow food, or drink pretty much anything. He has lost one kilo per day. Not ideal. His Radiology Specialist Tristan was amazed at his pain threshold. Tristan said most people with a huge blister across the base of their tongue would come in begging for morphine. Tristan prescribed him a morphine patch and morphine drops for his mouth so he could possibly eat . . . . . essentialy read him the riot act, pretty much about eating.
I really feel for him at the moment, poor thing, he is trying to eat and drink but it is just too hard. He knows I am only trying to help him but I come across a nag . . . a supernag!
A wise man once said to me "Yes! I am a strong man, but I know when I am beaten" . . . . That was my dad.
I had begged him to swallow some water . . .
He has been given til next Wednesday to eat enough calories per day to not lose anymore weight, otherwise it's a feeding tube. Which will have to go into his stomach as he uses a CPAP machine for chronic sleep apnoea and the mask wont fit over the tube if it's down his nose.
Remember? I made him a promise about that feeding tube . . . . . I am struggling to keep said promise.
Forgive me my sweet (him) . . this is how I feel . . . .
I now have a newborn baby.
Remember your firstborn? Did it come swooshing out waving an instruction manual? Were you bombarded with advice from everyone around you, nurses, midwives, parents, friends, even strangers, about the birth, breast feeding, controlled crying, SIDS, toilet training food choice nappies bottles crawling rashes teething crying sleeping hiccups burping nipple cream aaaaaaaaaaaaaah.
Parenting was trial and error for me, us, with a little bit of factual knowledge thrown in from an experienced few. And some books.
This PC is very much like having a newborn.
It is an entity all of it's own.
It was thrust upon us with no warning. We had little prior experience. We had no idea how to handle it. Where to start. We relied on others, professionals to tell us what to do. Though we were also told "everyone is different".
PC's behaviour is that of an infant . . . It refuses food and drink so it doesn't get enough nutrition. It loses weight when it is supposed to be gaining or at least stabilising it. It screws its nose up at most meals on offer. It wont drink enough water to stay hydrated. It doesn't sleep well by itself, it doesn't like going anywhere alone, it requires constant supervision, it needs everything monitored, it's meds, it's fluid, it's food, it's appointments, it's moods, it's rashes, it's it's it's it's it's . . . . . . . . . . . . . and then! it throws a wobbly!!!!! FFS FUPC
I feel very sad for him at the moment. He feels like a pile of grey mushy tasteless shit. He feels sad for me. We are both feeling sad. However this is a team effort, we will win. I will keep being a pain in the arse "parent" of you PC, even if he gets upset. I wont let you take my man away.
Today he has had : 1 black coffee (his luxury. I would rather he didn't as it dehydrates him, but he loves it) , 1/8th of a white piece of bread with a smidge of peanut butter and a sip of lemonade. 1 protein drink 125mls. That's all.
So tonight's plan is to use the morphine drops 30 minutes before eating, and use the Lignocaine (an anaesthetic) for the first time. It will numb his mouth and his tongue and his throat. Hopefully he will get some food down.
I will let you know how he goes in this post . . . back soon.
Little bear said: "it's too hot mumma!", "it's too cold mumma!" . . . "it's not right mumma!". He doesn't realise his mouth is totally numb with Lignocaine so he cant feel the heat. He has just gone to heat up part of his meal in the microwave and I hope he doesn't burn his mouth. Maybe I should let him? so he will accept the hotness I make it? I couldn't put my finger in it, it was hot for me. Struggles we have . . . .
He thought I was hovering. I was in the kitchen watching him eat at the table. Yes I was hovering! Fuck I need to know what is going down that ulcerated throat of his. So I know what to do at the next meal. Nuthin went down . . .
He feels like I am nagging him, hanging over him, annoying him, mothering him. He has told me so. I see it in his eyes. It's the very same look my dad gave my mum. It's not "him". It's an alien being that has inhabited him. That alien I am fighting!!!! You aint gunna beat me alien.
Cortisone cream they have given us to put on his torso, as he has loads of spotty things hanging around. We thought they were a heat rash. Naaah it would have gone by now. He took an antihistamine tablet and that didn't do anything.
I am sitting out on our relaxing verandah . . . I hear crickets, birds, bats, owls, cars, Simon & Garfunkel Mrs. Robinson. I am in a comfortable place.
FUPC please don't take him. I need him.
Half way !!!!!
He had his half way chemo day yesterday. That was a milestone we were really happy about. 5.30am start, home at 6.10pm.
tick tock back in time . . . . . He went downhill on the weekend, suddenly. He woke up on Sunday unable to eat, swallow food, or drink pretty much anything. He has lost one kilo per day. Not ideal. His Radiology Specialist Tristan was amazed at his pain threshold. Tristan said most people with a huge blister across the base of their tongue would come in begging for morphine. Tristan prescribed him a morphine patch and morphine drops for his mouth so he could possibly eat . . . . . essentialy read him the riot act, pretty much about eating.
I really feel for him at the moment, poor thing, he is trying to eat and drink but it is just too hard. He knows I am only trying to help him but I come across a nag . . . a supernag!
A wise man once said to me "Yes! I am a strong man, but I know when I am beaten" . . . . That was my dad.
I had begged him to swallow some water . . .
He has been given til next Wednesday to eat enough calories per day to not lose anymore weight, otherwise it's a feeding tube. Which will have to go into his stomach as he uses a CPAP machine for chronic sleep apnoea and the mask wont fit over the tube if it's down his nose.
Remember? I made him a promise about that feeding tube . . . . . I am struggling to keep said promise.
Forgive me my sweet (him) . . this is how I feel . . . .
I now have a newborn baby.
Remember your firstborn? Did it come swooshing out waving an instruction manual? Were you bombarded with advice from everyone around you, nurses, midwives, parents, friends, even strangers, about the birth, breast feeding, controlled crying, SIDS, toilet training food choice nappies bottles crawling rashes teething crying sleeping hiccups burping nipple cream aaaaaaaaaaaaaah.
Parenting was trial and error for me, us, with a little bit of factual knowledge thrown in from an experienced few. And some books.
This PC is very much like having a newborn.
It is an entity all of it's own.
It was thrust upon us with no warning. We had little prior experience. We had no idea how to handle it. Where to start. We relied on others, professionals to tell us what to do. Though we were also told "everyone is different".
PC's behaviour is that of an infant . . . It refuses food and drink so it doesn't get enough nutrition. It loses weight when it is supposed to be gaining or at least stabilising it. It screws its nose up at most meals on offer. It wont drink enough water to stay hydrated. It doesn't sleep well by itself, it doesn't like going anywhere alone, it requires constant supervision, it needs everything monitored, it's meds, it's fluid, it's food, it's appointments, it's moods, it's rashes, it's it's it's it's it's . . . . . . . . . . . . . and then! it throws a wobbly!!!!! FFS FUPC
I feel very sad for him at the moment. He feels like a pile of grey mushy tasteless shit. He feels sad for me. We are both feeling sad. However this is a team effort, we will win. I will keep being a pain in the arse "parent" of you PC, even if he gets upset. I wont let you take my man away.
Today he has had : 1 black coffee (his luxury. I would rather he didn't as it dehydrates him, but he loves it) , 1/8th of a white piece of bread with a smidge of peanut butter and a sip of lemonade. 1 protein drink 125mls. That's all.
So tonight's plan is to use the morphine drops 30 minutes before eating, and use the Lignocaine (an anaesthetic) for the first time. It will numb his mouth and his tongue and his throat. Hopefully he will get some food down.
I will let you know how he goes in this post . . . back soon.
Little bear said: "it's too hot mumma!", "it's too cold mumma!" . . . "it's not right mumma!". He doesn't realise his mouth is totally numb with Lignocaine so he cant feel the heat. He has just gone to heat up part of his meal in the microwave and I hope he doesn't burn his mouth. Maybe I should let him? so he will accept the hotness I make it? I couldn't put my finger in it, it was hot for me. Struggles we have . . . .
He thought I was hovering. I was in the kitchen watching him eat at the table. Yes I was hovering! Fuck I need to know what is going down that ulcerated throat of his. So I know what to do at the next meal. Nuthin went down . . .
He feels like I am nagging him, hanging over him, annoying him, mothering him. He has told me so. I see it in his eyes. It's the very same look my dad gave my mum. It's not "him". It's an alien being that has inhabited him. That alien I am fighting!!!! You aint gunna beat me alien.
Cortisone cream they have given us to put on his torso, as he has loads of spotty things hanging around. We thought they were a heat rash. Naaah it would have gone by now. He took an antihistamine tablet and that didn't do anything.
I am sitting out on our relaxing verandah . . . I hear crickets, birds, bats, owls, cars, Simon & Garfunkel Mrs. Robinson. I am in a comfortable place.
FUPC please don't take him. I need him.
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| discarded food, it stings |
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| kitchen bench meds |
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| temp chart |
 |
| daily meds |
 |
| the wizzy station |
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| protein drinks in the fridge |
Oh gees! My heart breaks for you both, I so know how you feel �� it’s the hardest thing to watch & for him to go through but there is a light at the end of the tunnel �� I feel so much for you guys & wish I could be there with you or help in some way. You are amazing & will get through this. I love you xx
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