lizziec: (Stargate SG1 Daniel Jackson)
As I posted earlier, mum died this morning at just gone 10am. It wasn't a huge shock. I mentioned in previous entries that she had got dramatically worse over the weekend, and yesterday afternoon during visiting hours Phil and I tracked down Fiona, the Macmillan nurse to see what was actually going on, as we hadn't seen an actual doctor who would tell us anything since the beginning of the previous week.

Fiona said she was shocked at how much worse mum was yesterday than she had been on Friday, and confirmed what I already felt - that we were looking at an extremely short period of time, probably just a few days. Fiona felt that mum would probably gradually slow down her breathing and fall into a coma and gradually stop breathing. She said we could stay at the hospital if we wanted, but that she felt we needed proper rest and that it would happen regardless of where we were - even if we just went to get a cup of tea, and so Phil and I decided that we would go home at the end of visiting hours. If were looking at a situation that could go on for days then we wanted to be fresh enough to deal with it. And in the condition that mum was in on Monday evening when we left, we knew it would be a strain. Her breathing was more laboured again than it was on Sunday, and her tongue had stopped working. She tried to say lots of things to me and Phil when we arrived, the only period she was really awake for, but unfortunately we couldn't understand any of it apart from our names. And that it was lovely when we wiped a cold flannel across her very hot face.

Fiona felt that the deterioration in mum's condition was caused by the fact that the tumour had grown so large that it was 1) causing swelling in her throat, making breathing difficult, and 2) pressing on the nerves and muscles that controlled mum's tongue, which is why it was we were struggling to understand anything she said.

As I said, when we left on Monday night it was clear we were looking at days at the most. I was worried we were looking at hours, but deciding there was nothing more we could do at the hospital, we came home.

We'd not been home long when the nurse looking after mum last night (Tidings) called and said that in the short time we'd been gone, mum was worse and that we should thing about coming in. We had dinner, and headed in, supported by my auntie Pat and uncle Allan. She was worse, and when we got there, Tidings told us that though mum was calmer, she had spent a good deal of time calling my name. We all sat around her bed and talked to her, and around her, and recalled memories of our childhood and the lovely times that we had had. All the while her breathing got worse and worse. She was also in a good deal of pain, the first time she's really been in pain since she was admitted to hospital on 29th April. They gave her a top up booster of morphine, besides what was in her syringe driver, but it didn't really seem to help much with her pain. Meanwhile she was sweating profusely, and we tried to keep her cool with wet flannels. After a while she rested more, Pat and Allan went home, Phil first dozed on the floor (to the horror of a nursing assistant), and then in the day room, where said horrified nursing assistant insisted that he move to, and I dozed fitfully in the chair next to her bed, waking every 20 mins or so to reassure her that she was ok, we were ok and that it was ok for her to let go if she wanted to, because we would be looked after. I tried to keep touching her arm and hand, though she kept withdrawing them to posture against her chest, which I think was a pain response.

We left her at about 7am. She seemed quieter, and though her breathing was a little worse (it had got steadily worse through the night), she was cooler and seemed to be in much less pain. We decided to go home and get some sleep, and come back at around 1pm.

So we left her, after telling her we loved her and we'd be back later. Came home, ate a little and fell into bed. Was woken at about 10:10 by a call from Fiona telling us that mum had died just a short time before. They had washed her and put her in a comfortable position and she had looked much easier. Even her breathing was a little better. A nurse was still with her, and Fiona had just gone away for a little while, and in that five minutes she'd simply stopped breathing. Fiona said that it was a very peaceful end.

She asked if we wanted to see her, and said we could hold her hand if we wanted to. We wandered down to the end of the ward, and she opened the door. And there mum was. And it was awful. I've never had such spontaneous tears as I had then. Immediately the door opened and I saw mum they started. She looked peaceful, yes, but she didn't look like my mummy. And seeing a body without seeing breathing is strange and odd and not nice. I couldn't touch her. I don't think I can bring myself to see her again after the funeral home lay her out. I'm almost regretting seeing her like that because I can't get the picture out of my head. But at the same time, if I hadn't seen her, the last image would have been of her in dreadful pain and discomfort. That image is still with me, in fact. I'm crying as I write this. I don't know which I would rather have. But I have them both, and I really hope that soon I can stop fixating on those awful thoughts of her and see her as she was most of the time. Fuck Cancer. It wasn't supposed to be like this. She was retiring in a year and going to have a huge party. And now she never will. I checked my irc logs. You know, it was less than four months, barely over three, from start to finish? First symptoms of tingling in February. It's barely May now and she's dead. Fuck cancer. Fuck it right in the ear.

Most of the rest of todoay has been a bit of a blur. Everyone's being awesome. So awesome that I don't know how I'll thank them, ever. We've called people, organised various things, and know which funeral home we'll be going with. I've picked an outfit for her. We've even sorted through a few of her physical posessions (though only her shoes, and toiletries). Tomorrow we're going to sort out the paperwork at the hospital, and then go and register the death with Wandsworth registry office, which is the district that St Georges falls in. After that we're heading to the Funeral Home, a local company called WA Truelove and Son, to start sorting out the funeral.

Bleh. Today was exhausting and hard in its own way. But I think last night, when she was in pain and crying and struggling for every breath that was hardest and worst. Possibly the hardest and worst night of my entire adult life.

Finally, ben signed mum off IRC tonight. It makes sense but feels awful.

20:47:49 -!- typo [typo@dm-11449.pok.me.uk] has quit [Exit: fuck cancer]


Sorry for the brain dump. Needed to get it out before I could sleep, and before I forgot it all.

ETA: 12/07/11 No longer filtered
lizziec: (Stargate SG1 Daniel Jackson)
As I posted earlier, mum died this morning at just gone 10am. It wasn't a huge shock. I mentioned in previous entries that she had got dramatically worse over the weekend, and yesterday afternoon during visiting hours Phil and I tracked down Fiona, the Macmillan nurse to see what was actually going on, as we hadn't seen an actual doctor who would tell us anything since the beginning of the previous week.

Fiona said she was shocked at how much worse mum was yesterday than she had been on Friday, and confirmed what I already felt - that we were looking at an extremely short period of time, probably just a few days. Fiona felt that mum would probably gradually slow down her breathing and fall into a coma and gradually stop breathing. She said we could stay at the hospital if we wanted, but that she felt we needed proper rest and that it would happen regardless of where we were - even if we just went to get a cup of tea, and so Phil and I decided that we would go home at the end of visiting hours. If were looking at a situation that could go on for days then we wanted to be fresh enough to deal with it. And in the condition that mum was in on Monday evening when we left, we knew it would be a strain. Her breathing was more laboured again than it was on Sunday, and her tongue had stopped working. She tried to say lots of things to me and Phil when we arrived, the only period she was really awake for, but unfortunately we couldn't understand any of it apart from our names. And that it was lovely when we wiped a cold flannel across her very hot face.

Fiona felt that the deterioration in mum's condition was caused by the fact that the tumour had grown so large that it was 1) causing swelling in her throat, making breathing difficult, and 2) pressing on the nerves and muscles that controlled mum's tongue, which is why it was we were struggling to understand anything she said.

As I said, when we left on Monday night it was clear we were looking at days at the most. I was worried we were looking at hours, but deciding there was nothing more we could do at the hospital, we came home.

We'd not been home long when the nurse looking after mum last night (Tidings) called and said that in the short time we'd been gone, mum was worse and that we should thing about coming in. We had dinner, and headed in, supported by my auntie Pat and uncle Allan. She was worse, and when we got there, Tidings told us that though mum was calmer, she had spent a good deal of time calling my name. We all sat around her bed and talked to her, and around her, and recalled memories of our childhood and the lovely times that we had had. All the while her breathing got worse and worse. She was also in a good deal of pain, the first time she's really been in pain since she was admitted to hospital on 29th April. They gave her a top up booster of morphine, besides what was in her syringe driver, but it didn't really seem to help much with her pain. Meanwhile she was sweating profusely, and we tried to keep her cool with wet flannels. After a while she rested more, Pat and Allan went home, Phil first dozed on the floor (to the horror of a nursing assistant), and then in the day room, where said horrified nursing assistant insisted that he move to, and I dozed fitfully in the chair next to her bed, waking every 20 mins or so to reassure her that she was ok, we were ok and that it was ok for her to let go if she wanted to, because we would be looked after. I tried to keep touching her arm and hand, though she kept withdrawing them to posture against her chest, which I think was a pain response.

We left her at about 7am. She seemed quieter, and though her breathing was a little worse (it had got steadily worse through the night), she was cooler and seemed to be in much less pain. We decided to go home and get some sleep, and come back at around 1pm.

So we left her, after telling her we loved her and we'd be back later. Came home, ate a little and fell into bed. Was woken at about 10:10 by a call from Fiona telling us that mum had died just a short time before. They had washed her and put her in a comfortable position and she had looked much easier. Even her breathing was a little better. A nurse was still with her, and Fiona had just gone away for a little while, and in that five minutes she'd simply stopped breathing. Fiona said that it was a very peaceful end.

She asked if we wanted to see her, and said we could hold her hand if we wanted to. We wandered down to the end of the ward, and she opened the door. And there mum was. And it was awful. I've never had such spontaneous tears as I had then. Immediately the door opened and I saw mum they started. She looked peaceful, yes, but she didn't look like my mummy. And seeing a body without seeing breathing is strange and odd and not nice. I couldn't touch her. I don't think I can bring myself to see her again after the funeral home lay her out. I'm almost regretting seeing her like that because I can't get the picture out of my head. But at the same time, if I hadn't seen her, the last image would have been of her in dreadful pain and discomfort. That image is still with me, in fact. I'm crying as I write this. I don't know which I would rather have. But I have them both, and I really hope that soon I can stop fixating on those awful thoughts of her and see her as she was most of the time. Fuck Cancer. It wasn't supposed to be like this. She was retiring in a year and going to have a huge party. And now she never will. I checked my irc logs. You know, it was less than four months, barely over three, from start to finish? First symptoms of tingling in February. It's barely May now and she's dead. Fuck cancer. Fuck it right in the ear.

Most of the rest of todoay has been a bit of a blur. Everyone's being awesome. So awesome that I don't know how I'll thank them, ever. We've called people, organised various things, and know which funeral home we'll be going with. I've picked an outfit for her. We've even sorted through a few of her physical posessions (though only her shoes, and toiletries). Tomorrow we're going to sort out the paperwork at the hospital, and then go and register the death with Wandsworth registry office, which is the district that St Georges falls in. After that we're heading to the Funeral Home, a local company called WA Truelove and Son, to start sorting out the funeral.

Bleh. Today was exhausting and hard in its own way. But I think last night, when she was in pain and crying and struggling for every breath that was hardest and worst. Possibly the hardest and worst night of my entire adult life.

Finally, ben signed mum off IRC tonight. It makes sense but feels awful.

20:47:49 -!- typo [typo@dm-11449.pok.me.uk] has quit [Exit: fuck cancer]


Sorry for the brain dump. Needed to get it out before I could sleep, and before I forgot it all.

ETA: 12/07/11 No longer locked
lizziec: (me - mummy and little lizzie)
Mum died in hospital today, at just gone 10am. The hospital kept her as comfortable and free from pain as they could, and the staff were fantastic. In the end, she just stopped breathing. We saw her after and she looked very peaceful. Details of the funeral to follow at a later date for those who are interested.
lizziec: (me - mummy and little lizzie)
Mum died in hospital today, at just gone 10am. The hospital kept her as comfortable and free from pain as they could, and the staff were fantastic. In the end, she just stopped breathing. We saw her after and she looked very peaceful. Details of the funeral to follow at a later date for those who are interested.
lizziec: (toys - efelant and lion)
Mum definitely worse today. She's stopped eating and drinking, though they're nourishing and hydrating her through the NG tube. She was confused, and had spent part of the morning shouting at the nurses and trying to get out of bed - by the time visiting hours started they had someone sitting in the doorway making sure she didn't get out of bed. When she wasn't trying to get out of bed, or thinking she needed to go to the toilet when she didn't she was asleep and barely responsive when she was (where before when she was asleep she would respond). The one time she was got out of bed, she kept her eyes shut the entire time. Her breathing is noisy and towards the end of visiting hours she would stop for a few seconds at a time, though it improved a little towards the end of the evening. When we left, the ward had sorted out a person whose sole job for the night was to sit with mum, though I don't know whether it was because they were concerned about her breathing, or her attempts to get out of bed, or both.

After today my gut feeling is the same, if not more reinforced. We're not looking at very long at all I think. A couple of weeks at most. Though, she wasn't expected to make it past last weekend, so I may be proven wrong. Time will tell I think.

ETA: 12/07/11 No longer filtered
lizziec: (toys - efelant and lion)
Mum definitely worse today. She's stopped eating and drinking, though they're nourishing and hydrating her through the NG tube. She was confused, and had spent part of the morning shouting at the nurses and trying to get out of bed - by the time visiting hours started they had someone sitting in the doorway making sure she didn't get out of bed. When she wasn't trying to get out of bed, or thinking she needed to go to the toilet when she didn't she was asleep and barely responsive when she was (where before when she was asleep she would respond). The one time she was got out of bed, she kept her eyes shut the entire time. Her breathing is noisy and towards the end of visiting hours she would stop for a few seconds at a time, though it improved a little towards the end of the evening. When we left, the ward had sorted out a person whose sole job for the night was to sit with mum, though I don't know whether it was because they were concerned about her breathing, or her attempts to get out of bed, or both.

After today my gut feeling is the same, if not more reinforced. We're not looking at very long at all I think. A couple of weeks at most. Though, she wasn't expected to make it past last weekend, so I may be proven wrong. Time will tell I think.

ETA: 12/07/11 No longer filtered
lizziec: (animals - badgers)
Had a lovely surprise the other night (Thursday) - foo and rah brought Ben up to me, which was amazing. They also brought benji to see me and we all ended up going for dinner after visiting hours, which helped recharge my spoons a little. Ben's heading back to Canterbury, and work today, but it's been amazing to have him around in the meantime. I don't know how I'll ever thank everyone for how amazing they're being.

Mum's still hanging on, but definitely getting a little bit worse every day. The doctors have put a nasogastric tube in to feed mum that way as she can't swallow any more. Any food she tries to eat gets spat back out again, and liquids just dribble out when she next opens her mouth. It's pretty grim to be honest. The downside to the feeding tube is that mum's finding it difficult to breathe with it in. The tumour is blocking off her left nostril, so she can't breathe through it and she can't have the tube up there, so they had to put it up her right nostril, which blocks that off as far as breathing goes. She's now breathing through her mouth only, which is somewhat complicated by the fact that she's now not producing enough saliva making her mouth incredibly dry. She's been prescribed some artifical saliva which has solved the problem somewhat, but it's another indicator of how much worse she's getting.

On the upside, she's off the insulin sliding scale now, and back on metformin, though a liquid version that's put in via her NG tube as she can't swallow. She's still on an IV for fluids though, due to the fact any drink she has comes straight out.

What's most distressing is how confused she was last night. I was hoping it was just because she'd been pulled around a lot yesterday - the NG tube going in, down to XRay to check it was sited correctly, (incidentally, I went there with her and was allowed to stay while they did the XRay and, despite everything, it was pretty cool), back to her room and then getting shuffled around in bed, having the feed connecting and having some trouble breathing, or at least thinking she did.

According to the nurse though, mum was confused again this morning. Last night she kept trying to get up to go to the toilet for a wee even though we kept reassuring her that she had a catheter in. She also kept tugging on the ng tube and towards the end was getting even more confused. She was worrying about the electricity board (why?), saying "he has two assistants" (no idea who has two assistants), and telling me how scared she was.

Being me, and incredibly pessimistic I was expecting the call last night because of that and slept pretty badly.

Mum is still here though, but according to the nurse still trying to get out of bed to go to the toilet. I'm hoping today's visit isn't like yesterdays because I'm not sure I could stand it. It was really really bad. I could handle her dying far better if it didn't feel like she was losing her marbles too. And I don't think it's just the drugs (the nurses pretty much said that if it was the drugs the confusion would have come up before, as she's been on the same combo of drugs for over a week now). Honestly I don't think she's got much longer. I may be being really pessimistic. I'm sure I am. But things just feel really bleak right now.

ETA: 12/07/11 No longer filtered
lizziec: (animals - badgers)
Had a lovely surprise the other night (Thursday) - foo and rah brought Ben up to me, which was amazing. They also brought benji to see me and we all ended up going for dinner after visiting hours, which helped recharge my spoons a little. Ben's heading back to Canterbury, and work today, but it's been amazing to have him around in the meantime. I don't know how I'll ever thank everyone for how amazing they're being.

Mum's still hanging on, but definitely getting a little bit worse every day. The doctors have put a nasogastric tube in to feed mum that way as she can't swallow any more. Any food she tries to eat gets spat back out again, and liquids just dribble out when she next opens her mouth. It's pretty grim to be honest. The downside to the feeding tube is that mum's finding it difficult to breathe with it in. The tumour is blocking off her left nostril, so she can't breathe through it and she can't have the tube up there, so they had to put it up her right nostril, which blocks that off as far as breathing goes. She's now breathing through her mouth only, which is somewhat complicated by the fact that she's now not producing enough saliva making her mouth incredibly dry. She's been prescribed some artifical saliva which has solved the problem somewhat, but it's another indicator of how much worse she's getting.

On the upside, she's off the insulin sliding scale now, and back on metformin, though a liquid version that's put in via her NG tube as she can't swallow. She's still on an IV for fluids though, due to the fact any drink she has comes straight out.

What's most distressing is how confused she was last night. I was hoping it was just because she'd been pulled around a lot yesterday - the NG tube going in, down to XRay to check it was sited correctly, (incidentally, I went there with her and was allowed to stay while they did the XRay and, despite everything, it was pretty cool), back to her room and then getting shuffled around in bed, having the feed connecting and having some trouble breathing, or at least thinking she did.

According to the nurse though, mum was confused again this morning. Last night she kept trying to get up to go to the toilet for a wee even though we kept reassuring her that she had a catheter in. She also kept tugging on the ng tube and towards the end was getting even more confused. She was worrying about the electricity board (why?), saying "he has two assistants" (no idea who has two assistants), and telling me how scared she was.

Being me, and incredibly pessimistic I was expecting the call last night because of that and slept pretty badly.

Mum is still here though, but according to the nurse still trying to get out of bed to go to the toilet. I'm hoping today's visit isn't like yesterdays because I'm not sure I could stand it. It was really really bad. I could handle her dying far better if it didn't feel like she was losing her marbles too. And I don't think it's just the drugs (the nurses pretty much said that if it was the drugs the confusion would have come up before, as she's been on the same combo of drugs for over a week now). Honestly I don't think she's got much longer. I may be being really pessimistic. I'm sure I am. But things just feel really bleak right now.

ETA: 12/07/11 No longer filtered

Mum update

5 May 2010 11:45 pm
lizziec: (owl)
Mum's still with us, and a bit better than she was, though in critical condition. If you want to send cards or anything you can either send them to the house (contact me for an address) or to the hospital:

mum's name
Florence Nightingale Ward
St James' Wing
St George's Hospital
Blackshaw Road
Tooting
London
SW17 0QT

The hospital request that if you do send something there you put a return address on it, in case they can't get it to the patient.

Mum update

5 May 2010 11:45 pm
lizziec: (owl)
Mum's still with us, and a bit better than she was, though in critical condition. If you want to send cards or anything you can either send them to the house (contact me for an address) or to the hospital:

mum's name
Florence Nightingale Ward
St James' Wing
St George's Hospital
Blackshaw Road
Tooting
London
SW17 0QT

The hospital request that if you do send something there you put a return address on it, in case they can't get it to the patient.
lizziec: (MASH - Hawkeye Trapper bromance)
Well the good news, that I truly did not expect to be writing over the weekend, is that mum is still with us, and in some ways far stronger that we would or could have dared to imagine. For example, she managed a shower yesterday. She is, however, still on what Fiona, the brilliant Macmillan nurse calls a knife edge. She's still not really stable.

We know a little more about what is going on now. Mum has an infection which is making it hard to control her blood sugar, and has been on IV antibiotics for it since she was admitted on Thursday. The antibiotics haven't knocked it out so they started her on a second antibiotic today. They don't know where the infection is though, so obviously that makes it hard to treat. There is a possibility, though I don't know how actually likely it is, that the infection is being caused by the tumour itself (that part of the tissue of the tumour has died and become necrotic - that is, it's rotting away in her head). As of now it is just a theory though.

I think I mentioned the arrhythmia before. It's Arterial Fibrilation, and it is at least under control at the moment.

In her current condition they would not be able to start radiotherapy, and until she is more stable they're certainly not talking about transferring her from St Georges to anywhere, even the Royal Marsden, and are even further away from discussing her discharge.

Mum is a little more awake at the moment than she was over the weekend, which, given how sick she was on Friday will probably not surprise anyone. She also gets tired very easily - just sitting up for 10 mins means she has to sleep for the next hour. The fact that she is more with it and even able to sit up is the silver lining. Here is the cloud.

The tumour symptoms have and are continuing to get much worse. There's a constant nasal discharge, and the numbness and weakness in her face is getting worse. She can barely bite or chew (which is the reason why the doctors are probably going to put in a feeding [NG] tube tomorrow), and when she drinks, most of the liquid comes out again, though because of the numbness she isn't aware of it. The deafness in her left ear is worse, and her right eye is bulging out more. We've been told that the biggest danger of mum dying imminently comes from the fact that the tumour is wrapped her carotid artery. Apparently this could weaken the wall of the artery and lead to a massive bleed, the only upside to which is that it kills pretty painlessly and immediately.

Because mum is so unstable still, Fiona, the brilliant Macmillan nurse, is sorting out a low cost solicitor that they apparently use all the time at the hospital, to come out and help mum sort a will and a power of attorney, so no matter what happens and when, we're covered.

Mum is having good days and bad days, mood wise. Today has been pretty bad. She's been moved to a side room on the same ward and is convinced that she's dying and noone has told her. Which isn't true, as i) she isn't dying in the sense she means it - she's still critical but she was much more obviously about to die on Friday, or Saturday or Sunday, and ii) we have told her everything we know, and whether or not she remembers it, the doctors have too. The reason they've moved her is to make it easier for her to sleep and easier for us to be with her. She's also talking about having the cats put down because "let's face it, I'm not going home again." When I said that whether or not that was true we liked and would care for the cats she looked at me like I was lying, pulled a face and ignored me for a bit.

Like I said, she was having a bad day.

On top of all of this, I'm becoming increasingly aware that I am running out of mental health spoons. Thanks to Ben being so supportive I went into mum's illness with quite a stockpile built up, but I'm becoming aware that I'm nearly out. I'm getting tired out more easily, and getting irritable and bad tempered for no reason, and overreacting to small irritating situations.

This is not good, but I don't really know how to remedy it. Going home to Canterbury would probably help, but if time is very short, I don't want to spend anywhere else - I'm spending visiting hours (all of them) at the hospital, and should she die, I don't want to be in Kent. Being in Coulsdon is already quite far enough from the hospital.

When at mum's (as opposed to the Hospital), other stuff has to be done - Phil and I divide this between ourselves, and ignored this stuff for several days when the danger was most - but it takes time and spoons to do. However, if we were to ignore this stuff we'd end up with no clean clothes, cutlery/crockery or floor/workspace. On top of everything, I'm not sleeping very deeply because part of me is expecting the phone call.

I'm starting to feel the depression again, and the anxiety (though not badly yet, just I'm aware of them). And that's stressing me out even more. I don't want to backslide, but I don't know how to not.

ETA: 12/07/11 No longer filtered
lizziec: (MASH - Hawkeye Trapper bromance)
Well the good news, that I truly did not expect to be writing over the weekend, is that mum is still with us, and in some ways far stronger that we would or could have dared to imagine. For example, she managed a shower yesterday. She is, however, still on what Fiona, the brilliant Macmillan nurse calls a knife edge. She's still not really stable.

We know a little more about what is going on now. Mum has an infection which is making it hard to control her blood sugar, and has been on IV antibiotics for it since she was admitted on Thursday. The antibiotics haven't knocked it out so they started her on a second antibiotic today. They don't know where the infection is though, so obviously that makes it hard to treat. There is a possibility, though I don't know how actually likely it is, that the infection is being caused by the tumour itself (that part of the tissue of the tumour has died and become necrotic - that is, it's rotting away in her head). As of now it is just a theory though.

I think I mentioned the arrhythmia before. It's Arterial Fibrilation, and it is at least under control at the moment.

In her current condition they would not be able to start radiotherapy, and until she is more stable they're certainly not talking about transferring her from St Georges to anywhere, even the Royal Marsden, and are even further away from discussing her discharge.

Mum is a little more awake at the moment than she was over the weekend, which, given how sick she was on Friday will probably not surprise anyone. She also gets tired very easily - just sitting up for 10 mins means she has to sleep for the next hour. The fact that she is more with it and even able to sit up is the silver lining. Here is the cloud.

The tumour symptoms have and are continuing to get much worse. There's a constant nasal discharge, and the numbness and weakness in her face is getting worse. She can barely bite or chew (which is the reason why the doctors are probably going to put in a feeding [NG] tube tomorrow), and when she drinks, most of the liquid comes out again, though because of the numbness she isn't aware of it. The deafness in her left ear is worse, and her right eye is bulging out more. We've been told that the biggest danger of mum dying imminently comes from the fact that the tumour is wrapped her carotid artery. Apparently this could weaken the wall of the artery and lead to a massive bleed, the only upside to which is that it kills pretty painlessly and immediately.

Because mum is so unstable still, Fiona, the brilliant Macmillan nurse, is sorting out a low cost solicitor that they apparently use all the time at the hospital, to come out and help mum sort a will and a power of attorney, so no matter what happens and when, we're covered.

Mum is having good days and bad days, mood wise. Today has been pretty bad. She's been moved to a side room on the same ward and is convinced that she's dying and noone has told her. Which isn't true, as i) she isn't dying in the sense she means it - she's still critical but she was much more obviously about to die on Friday, or Saturday or Sunday, and ii) we have told her everything we know, and whether or not she remembers it, the doctors have too. The reason they've moved her is to make it easier for her to sleep and easier for us to be with her. She's also talking about having the cats put down because "let's face it, I'm not going home again." When I said that whether or not that was true we liked and would care for the cats she looked at me like I was lying, pulled a face and ignored me for a bit.

Like I said, she was having a bad day.

On top of all of this, I'm becoming increasingly aware that I am running out of mental health spoons. Thanks to Ben being so supportive I went into mum's illness with quite a stockpile built up, but I'm becoming aware that I'm nearly out. I'm getting tired out more easily, and getting irritable and bad tempered for no reason, and overreacting to small irritating situations.

This is not good, but I don't really know how to remedy it. Going home to Canterbury would probably help, but if time is very short, I don't want to spend anywhere else - I'm spending visiting hours (all of them) at the hospital, and should she die, I don't want to be in Kent. Being in Coulsdon is already quite far enough from the hospital.

When at mum's (as opposed to the Hospital), other stuff has to be done - Phil and I divide this between ourselves, and ignored this stuff for several days when the danger was most - but it takes time and spoons to do. However, if we were to ignore this stuff we'd end up with no clean clothes, cutlery/crockery or floor/workspace. On top of everything, I'm not sleeping very deeply because part of me is expecting the phone call.

I'm starting to feel the depression again, and the anxiety (though not badly yet, just I'm aware of them). And that's stressing me out even more. I don't want to backslide, but I don't know how to not.

ETA: 12/07/11 No longer filtered
lizziec: (animals - giraffe hug)
Most of you know mum has been diagnosed with a large cancerous tumour in her nasal cavity, stretching back a long way, wrapping itself around mum's carotid artery and causing a number of highly unpleasant symptoms, all of which led mum to be admitted to hospital yesterday, somewhat unexpectedly.

When we went to visit mum it was clear she was much worse than she was yesterday - hooked up to a heart monitor, nasal oxygen and several different lines and things going in to her - also looking weaker than yesterday and much sleepier.

Long story short, when the doctor saw me and Phil she said there was a good chance that mum won't live through the weekend, and in the end, after a good deal of discussion, we agreed to a DNR (Do Not Resuscitate) order.

While we discussed all of that, my bag was stolen from next to mum's bed, where I'd stupidly left it when the dr came to talk to us, which meant I spent an hour or so that I could have spent with mum searching for my bag, reporting the theft and cancelling my cards. That was an hour I couldn't spend with my critically ill mum, and if she dies tonight I really don't know how I could ever forgive the person who took it.

We've spoken to mum. She knows about and agrees with our decision. She wasn't upset or surprised, at least, not that we could see. We said all we wanted and needed to to her, and she said what she wanted and needed to, to us. From that point of view we are incredibly lucky, but it was one of the hardest things I've done in my life. She said she didn't want us to stay, and so we came home, but I can't sleep right now.
lizziec: (animals - giraffe hug)
Most of you know mum has been diagnosed with a large cancerous tumour in her nasal cavity, stretching back a long way, wrapping itself around mum's carotid artery and causing a number of highly unpleasant symptoms, all of which led mum to be admitted to hospital yesterday, somewhat unexpectedly.

When we went to visit mum it was clear she was much worse than she was yesterday - hooked up to a heart monitor, nasal oxygen and several different lines and things going in to her - also looking weaker than yesterday and much sleepier.

Long story short, when the doctor saw me and Phil she said there was a good chance that mum won't live through the weekend, and in the end, after a good deal of discussion, we agreed to a DNR (Do Not Resuscitate) order.

While we discussed all of that, my bag was stolen from next to mum's bed, where I'd stupidly left it when the dr came to talk to us, which meant I spent an hour or so that I could have spent with mum searching for my bag, reporting the theft and cancelling my cards. That was an hour I couldn't spend with my critically ill mum, and if she dies tonight I really don't know how I could ever forgive the person who took it.

We've spoken to mum. She knows about and agrees with our decision. She wasn't upset or surprised, at least, not that we could see. We said all we wanted and needed to to her, and she said what she wanted and needed to, to us. From that point of view we are incredibly lucky, but it was one of the hardest things I've done in my life. She said she didn't want us to stay, and so we came home, but I can't sleep right now.
lizziec: (me - mummy and little lizzie)
Ben and I spent some time today sorting out some flowers and a balloon for mum's cubicle at the hospital, to make it a little more bright, having first checked that the ward allows flowers. We ended up getting a beautiful box of flowers from Mad Lillies in Banstead, which is where we got our wedding flowers from. That done, and with Phil back from work, we all headed up to Tooting to visit mum, getting to the hospital at about 5:15pm.

It was immediately clear that mum was worse than yesterday. They had her hooked up to a heart monitor, nasal oxygen on her and several different lines and things going in to her. She looked much weaker than yesterday, much sleepier, and she was having more nasty puss-y discharge from her nose than yesterday. Ben said hi and then went down to the cafe for a coffee - St Georges helpfully has an M&S food hall and cafe, which is a real bonus and all round fabulous idea - and Phil and I dumped our bags at the end of the bed, and then went through mum's post with her and read to her from BBC History magazine, which was all I had on me.

After a bit, one of the doctors came over and wanted to speak with me and Phil, so we dropped everything and went with her to a private room. A nurse got me a hot drink and really I should have known. That is never ever a good sign.

What the doctor had to say was incredibly hard for Phil and I to hear. What she wanted to do was tell us where we were up to today, and discuss with us a Do Not Resuscitate order.

She explained to us that while mum's blood sugar was much better (down to 11), she was much much worse than she had been 24 hours earlier. Mum's heart is getting very weak and mum herself is very tired. And she didn't mean that in a "she'll sleep and wake up refreshed" way, but in a "probably wanting to die" sort of way. And mum herself said later that she was very tired. Mum's resting heart rate is between 130 and 170bpm and the doctor thought it quite likely that at some point over the weekend it would stop. She also said that mum was in a lot of pain, and had been put on a morphine infusion earlier in the day to deal with the pain (previously she was on 30mg Codeine).

The hardest bit to hear was that she didn't think that mum's quality of life would get any better, even if the tumour does shrink a little bit (and the likelihood is that even if they can pull her through this, she will probably not be fit enough for radiotherapy), and she will continue to be in a lot of pain. She said that the consultants - Mr Mady, Mr Williamson and another (Mr Lee?) had met, and felt that the best and kindest thing would be not to resuscitate mum if her heart did stop. Phil and I were left to talk, and we called mum's brother and my aunt (dad's sister) and we all agreed that a DNR was the kindest thing that we could do. We (me and Phil) felt, and still feel, that to bring her back for more pain and suffering and poor quality of life is really just selfishness on our part. So we told the staff that we didn't want them to try and bring her back if her heart or breathing stop.

About 45 mins after the doctor had taken Phil and I aside, and when I finally could think about anything again, I found that my bag, that I'd stupidly dropped at the end of mum's bed earlier had gone missing. Phil's was still there. We searched the ward for it, and couldn't find it. The nursing staff were horrified and reported it to security, and I spent the next hour searching for my bag, reporting the theft and cancelling my cards. In the morning I need to call the DVLA.

There was nothing especially of value in there - just my notebooks (which I'm sad, especially as there were some untyped up stories) to lose) and my backpack (which I'm very sad to lose, especially given it had lots of keyrings I'd collected and things on it which made it an individual thing), and my purse, which had next to no actual money in it, just awkward things like cards and my driving licence in it. But the hour I spent having to report the loss and cancel the cards was an hour I couldn't spend with my critically ill mum, and if she dies tonight I really don't know how I could ever forgive the person who took it.

Mum's partner dropped by during the evening and we told him too. He was very emotional and gave back his key as he left. It was all pretty awful.

We ended up staying past the end of visiting hours, and the staff were very accommodating and left us be. We ended up telling mum and though she hadn't been spoken to explicitly (that she can remember, she's spent most of today pretty much asleep) she didn't seem at all surprised, or even terribly upset. We said that the DNR is ultimately her decision, as despite the sleepiness, her mind is still sharp. She said she agreed with our decision.

We told her how much we love her, and how proud we are of her, and how brilliant she's been and kissed her a lot. She said how much she loves us. We asked if she wanted us to stay and she said no.

So we came home. Via my aunties, who made us drinks and listened to us go through it logically. Ben drove home, which is good because I'm not sure I was capable.

Writing it all out now, it probably sounds a good deal more calm than it was. It involved much more intermittent crying from everyone (except mum) than I state here. Now I'm rather calmer. Still fairly near tears but oddly numb.

Today was awful. Really awful. Really really awful. And there's only a slim chance it will get better soon. Thank you to everyone who has sent thoughts and prayers. They're helping keep me afloat right now. More of the same please.

ETA: 12/07/11 No longer filtered
lizziec: (me - mummy and little lizzie)
Ben and I spent some time today sorting out some flowers and a balloon for mum's cubicle at the hospital, to make it a little more bright, having first checked that the ward allows flowers. We ended up getting a beautiful box of flowers from Mad Lillies in Banstead, which is where we got our wedding flowers from. That done, and with Phil back from work, we all headed up to Tooting to visit mum, getting to the hospital at about 5:15pm.

It was immediately clear that mum was worse than yesterday. They had her hooked up to a heart monitor, nasal oxygen on her and several different lines and things going in to her. She looked much weaker than yesterday, much sleepier, and she was having more nasty puss-y discharge from her nose than yesterday. Ben said hi and then went down to the cafe for a coffee - St Georges helpfully has an M&S food hall and cafe, which is a real bonus and all round fabulous idea - and Phil and I dumped our bags at the end of the bed, and then went through mum's post with her and read to her from BBC History magazine, which was all I had on me.

After a bit, one of the doctors came over and wanted to speak with me and Phil, so we dropped everything and went with her to a private room. A nurse got me a hot drink and really I should have known. That is never ever a good sign.

What the doctor had to say was incredibly hard for Phil and I to hear. What she wanted to do was tell us where we were up to today, and discuss with us a Do Not Resuscitate order.

She explained to us that while mum's blood sugar was much better (down to 11), she was much much worse than she had been 24 hours earlier. Mum's heart is getting very weak and mum herself is very tired. And she didn't mean that in a "she'll sleep and wake up refreshed" way, but in a "probably wanting to die" sort of way. And mum herself said later that she was very tired. Mum's resting heart rate is between 130 and 170bpm and the doctor thought it quite likely that at some point over the weekend it would stop. She also said that mum was in a lot of pain, and had been put on a morphine infusion earlier in the day to deal with the pain (previously she was on 30mg Codeine).

The hardest bit to hear was that she didn't think that mum's quality of life would get any better, even if the tumour does shrink a little bit (and the likelihood is that even if they can pull her through this, she will probably not be fit enough for radiotherapy), and she will continue to be in a lot of pain. She said that the consultants - Mr Mady, Mr Williamson and another (Mr Lee?) had met, and felt that the best and kindest thing would be not to resuscitate mum if her heart did stop. Phil and I were left to talk, and we called mum's brother and my aunt (dad's sister) and we all agreed that a DNR was the kindest thing that we could do. We (me and Phil) felt, and still feel, that to bring her back for more pain and suffering and poor quality of life is really just selfishness on our part. So we told the staff that we didn't want them to try and bring her back if her heart or breathing stop.

About 45 mins after the doctor had taken Phil and I aside, and when I finally could think about anything again, I found that my bag, that I'd stupidly dropped at the end of mum's bed earlier had gone missing. Phil's was still there. We searched the ward for it, and couldn't find it. The nursing staff were horrified and reported it to security, and I spent the next hour searching for my bag, reporting the theft and cancelling my cards. In the morning I need to call the DVLA.

There was nothing especially of value in there - just my notebooks (which I'm sad, especially as there were some untyped up stories) to lose) and my backpack (which I'm very sad to lose, especially given it had lots of keyrings I'd collected and things on it which made it an individual thing), and my purse, which had next to no actual money in it, just awkward things like cards and my driving licence in it. But the hour I spent having to report the loss and cancel the cards was an hour I couldn't spend with my critically ill mum, and if she dies tonight I really don't know how I could ever forgive the person who took it.

Mum's partner dropped by during the evening and we told him too. He was very emotional and gave back his key as he left. It was all pretty awful.

We ended up staying past the end of visiting hours, and the staff were very accommodating and left us be. We ended up telling mum and though she hadn't been spoken to explicitly (that she can remember, she's spent most of today pretty much asleep) she didn't seem at all surprised, or even terribly upset. We said that the DNR is ultimately her decision, as despite the sleepiness, her mind is still sharp. She said she agreed with our decision.

We told her how much we love her, and how proud we are of her, and how brilliant she's been and kissed her a lot. She said how much she loves us. We asked if she wanted us to stay and she said no.

So we came home. Via my aunties, who made us drinks and listened to us go through it logically. Ben drove home, which is good because I'm not sure I was capable.

Writing it all out now, it probably sounds a good deal more calm than it was. It involved much more intermittent crying from everyone (except mum) than I state here. Now I'm rather calmer. Still fairly near tears but oddly numb.

Today was awful. Really awful. Really really awful. And there's only a slim chance it will get better soon. Thank you to everyone who has sent thoughts and prayers. They're helping keep me afloat right now. More of the same please.

ETA: 12/07/11 No longer filtered
lizziec: (Default)
As the title says, today has been a very long and fairly shitty day. Came up to take mum to the St Georges ENT clinic today, but it was obvious fairly early on that mum was having one of her bad days. On the way to St Georges mum was sick. Luckily in to a bowl, but it took me 10 mins (blocking a bus stop, where I'd hurriedly pulled over in a bit of a panic, with my car) to actually empty the bowl down a drain. All the while I was apologising for being rubbish. Then, because I was still retching, I made mum rinse it out with some bottled water, making me even more rubbish, and probably a terrible person who is going straight to hell.

Mum ended this weak as a kitten, probably not helped by the fact her blood sugar was up at 26 (7 is normal) and needed a wheelchair from the entrance of the hospital to the clinic. Because of the sickness, mum missed her appointment slot of 11:15 (though we did call to notify them - and when we got there at 11:20 it took half an hour of queueing to book mum in because of problems caused by a new computer system) and we ended up not being seen until about 12:45.

When we got in, mum was promptly sick again in front of the doctor - not lovely Mr Williamson, which was a shame because I didn't like the doctor we did see (Mr Mady, and a visiting consultant from the Royal Marsden who I liked more) - who appeared to be frozen in horror for a good thirty seconds after the vomiting started. When the vomiting was over, and mum a bit more settled, though feeling seriously shitty, Mr Mady said "well, it's definitely cancer..."

Honestly, the way he said it, if I wasn't already so tired I'd have laughed. Mum sounded pissed and said what we were all thinking "We already knew that". The way the man announced it, he said it like it was new news. In fact, the only thing we've known for weeks is that it is cancer of some type or other. Then he told us that it didn't much matter what type now, and they were going to offer radiotherapy, starting in a couple of weeks at the Marsden in Sutton. Apparently the timescale for starting radiotherapy is pretty fast as far as starting radiotherapy is concerned. I don't know how true that is though. Then mum was sick again and they said she looked dreadful, I told them about her high blood sugar and they said they wanted to admit her. In fact, Mr Mady said it three or four times and we agreed each time, which irritated me (the repeated statement) - in fact he did that several times with different things and that really annoyed me, which I think is why I don't really like him. He appeared to treat us like we were stupid, which is a huge bug bear for me. The really awful news though, given by the nicer doctor - from the Royal Marsden - is that if the tumour doesn't respond to the radiotherapy, we're looking at a life span of "months rather than years".

I knew in my gut that months was probably what we were looking at if the tumour couldn't be shrunk, but to have it confirmed was a really nasty moment and made a fairly shitty day a really mostly shitty day.

Then we had to wait around for a bed to be found for mum, for nearly four hours in fact, which was punctuated frequently by mum telling us how much she wanted to lie down. They did some admitting stuff at the clinic and tested her blood sugar again. This time it was a 33.

Mum was admitted to a ward where they catheterised her and started on a sliding scale of IV insulin to get her blood sugar back under control, put on saline to rehydrate her and they may at some point start her on some more steroids. All of this is with a view to getting her fit to start radiotherapy. At the moment they're looking at three or four days in St Georges, possibly transferring her to the Royal Marsden at Sutton as an inpatient after a few days. It really depends on how she responds to treatment and where they decide to go from there.

While they got her settled, the wonderful Fiona, mum's Macmillan Nurse brought me a cup of hot chocolate and some biscuits that were the first food and drink to pass my lips all day, which given it was 4pm was not a good thing. Then she told me to make sure I took proper care of myself.

So right now I'm shattered, physically and mentally. I spent a good deal of the time waiting at the clinic and then waiting for a bed standing, and then once mum was settled I came back to mum's to get Phil and her stuff (which Phil sorted out for me), back to St Georges to drop stuff off and see her before visiting hours ended, then back to mum's again. In between times, I made calls to various people to tell them what was going on so it could be passed down the phone tree. On the upside, I got back to mum's to find ben, who came up on the spur of the moment, on the back of today's developments, having been given a lift by a work colleague who goes on my list of people who I will never be able to thank adequately.

Been a long and shitty day therefore. I think tomorrow will be pretty long too. And this post has taken me forever because I'm using ben's eeepc and samsung nc10 (ben made me swap because I was getting wound up at the tiny keyboard on the eee) because the hinge on my thinkpad is broken... but more on that another time. This post is quite long enough already.

ETA: 12/07/11 No longer filtered
lizziec: (Default)
As the title says, today has been a very long and fairly shitty day. Came up to take mum to the St Georges ENT clinic today, but it was obvious fairly early on that mum was having one of her bad days. On the way to St Georges mum was sick. Luckily in to a bowl, but it took me 10 mins (blocking a bus stop, where I'd hurriedly pulled over in a bit of a panic, with my car) to actually empty the bowl down a drain. All the while I was apologising for being rubbish. Then, because I was still retching, I made mum rinse it out with some bottled water, making me even more rubbish, and probably a terrible person who is going straight to hell.

Mum ended this weak as a kitten, probably not helped by the fact her blood sugar was up at 26 (7 is normal) and needed a wheelchair from the entrance of the hospital to the clinic. Because of the sickness, mum missed her appointment slot of 11:15 (though we did call to notify them - and when we got there at 11:20 it took half an hour of queueing to book mum in because of problems caused by a new computer system) and we ended up not being seen until about 12:45.

When we got in, mum was promptly sick again in front of the doctor - not lovely Mr Williamson, which was a shame because I didn't like the doctor we did see (Mr Mady, and a visiting consultant from the Royal Marsden who I liked more) - who appeared to be frozen in horror for a good thirty seconds after the vomiting started. When the vomiting was over, and mum a bit more settled, though feeling seriously shitty, Mr Mady said "well, it's definitely cancer..."

Honestly, the way he said it, if I wasn't already so tired I'd have laughed. Mum sounded pissed and said what we were all thinking "We already knew that". The way the man announced it, he said it like it was new news. In fact, the only thing we've known for weeks is that it is cancer of some type or other. Then he told us that it didn't much matter what type now, and they were going to offer radiotherapy, starting in a couple of weeks at the Marsden in Sutton. Apparently the timescale for starting radiotherapy is pretty fast as far as starting radiotherapy is concerned. I don't know how true that is though. Then mum was sick again and they said she looked dreadful, I told them about her high blood sugar and they said they wanted to admit her. In fact, Mr Mady said it three or four times and we agreed each time, which irritated me (the repeated statement) - in fact he did that several times with different things and that really annoyed me, which I think is why I don't really like him. He appeared to treat us like we were stupid, which is a huge bug bear for me. The really awful news though, given by the nicer doctor - from the Royal Marsden - is that if the tumour doesn't respond to the radiotherapy, we're looking at a life span of "months rather than years".

I knew in my gut that months was probably what we were looking at if the tumour couldn't be shrunk, but to have it confirmed was a really nasty moment and made a fairly shitty day a really mostly shitty day.

Then we had to wait around for a bed to be found for mum, for nearly four hours in fact, which was punctuated frequently by mum telling us how much she wanted to lie down. They did some admitting stuff at the clinic and tested her blood sugar again. This time it was a 33.

Mum was admitted to a ward where they catheterised her and started on a sliding scale of IV insulin to get her blood sugar back under control, put on saline to rehydrate her and they may at some point start her on some more steroids. All of this is with a view to getting her fit to start radiotherapy. At the moment they're looking at three or four days in St Georges, possibly transferring her to the Royal Marsden at Sutton as an inpatient after a few days. It really depends on how she responds to treatment and where they decide to go from there.

While they got her settled, the wonderful Fiona, mum's Macmillan Nurse brought me a cup of hot chocolate and some biscuits that were the first food and drink to pass my lips all day, which given it was 4pm was not a good thing. Then she told me to make sure I took proper care of myself.

So right now I'm shattered, physically and mentally. I spent a good deal of the time waiting at the clinic and then waiting for a bed standing, and then once mum was settled I came back to mum's to get Phil and her stuff (which Phil sorted out for me), back to St Georges to drop stuff off and see her before visiting hours ended, then back to mum's again. In between times, I made calls to various people to tell them what was going on so it could be passed down the phone tree. On the upside, I got back to mum's to find ben, who came up on the spur of the moment, on the back of today's developments, having been given a lift by a work colleague who goes on my list of people who I will never be able to thank adequately.

Been a long and shitty day therefore. I think tomorrow will be pretty long too. And this post has taken me forever because I'm using ben's eeepc and samsung nc10 (ben made me swap because I was getting wound up at the tiny keyboard on the eee) because the hinge on my thinkpad is broken... but more on that another time. This post is quite long enough already.

ETA: 12/07/11 No longer filtered
lizziec: (turtle hugs)
I'm having something of a rest day today, as my Sundays in Canterbury have all been to some extent since this has all kicked off. We try to get everything errandy or houseworky done on Saturday so I can chill on Sunday, which is much needed.

Having said that, I woke up this morning crying after a dream in which my brother died of Cancer (why it was Phil and not mum I don't know), which wasn't the best start to a morning ever - waking up crying really sucks :/. Thankfully the rest of the day has improved on that and I'm feeling rather more rested than I did. Roast dinner tonight. MMmmm :)

After talking briefly to mum, and in a little more detail to Phil, (and going from advice from lots of people) I've decided to stay in Canterbury for a few days. Well, sort of, anyway.

The hospital will be calling tomorrow, hopefully with some idea of what the tumour is. If it's one that needs urgent treatment then I'll head up straight away (I'm "only" an hour away, and I'm packing first thing, just in case) and take her to the hospital. She'll probably need an hour to sort herself out properly anyway. If they say that it's not Urgent (for certain values of urgent anyway) I'll stay until Wednesday, heading up for the consult on Thursday at St Georges when we'll find out for sure.

ETA: 12/07/11 No longer filtered

With the worst case scenareo meaning driving up tomorrow morning, I'll at least get an extra night in my own bed with my own things, and that can't be bad. That's what I keep telling myself anyway, to help deal with the irrational guilt I feel at not heading back now, or first thing tomorrow for certain.
lizziec: (turtle hugs)
I'm having something of a rest day today, as my Sundays in Canterbury have all been to some extent since this has all kicked off. We try to get everything errandy or houseworky done on Saturday so I can chill on Sunday, which is much needed.

Having said that, I woke up this morning crying after a dream in which my brother died of Cancer (why it was Phil and not mum I don't know), which wasn't the best start to a morning ever - waking up crying really sucks :/. Thankfully the rest of the day has improved on that and I'm feeling rather more rested than I did. Roast dinner tonight. MMmmm :)

After talking briefly to mum, and in a little more detail to Phil, (and going from advice from lots of people) I've decided to stay in Canterbury for a few days. Well, sort of, anyway.

The hospital will be calling tomorrow, hopefully with some idea of what the tumour is. If it's one that needs urgent treatment then I'll head up straight away (I'm "only" an hour away, and I'm packing first thing, just in case) and take her to the hospital. She'll probably need an hour to sort herself out properly anyway. If they say that it's not Urgent (for certain values of urgent anyway) I'll stay until Wednesday, heading up for the consult on Thursday at St Georges when we'll find out for sure.

With the worst case scenareo meaning driving up tomorrow morning, I'll at least get an extra night in my own bed with my own things, and that can't be bad. That's what I keep telling myself anyway, to help deal with the irrational guilt I feel at not heading back now, or first thing tomorrow for certain.

ETA: 12/07/11 No longer filtered
lizziec: (cartoon penguins stealing sanity)
First things first, Phil's first driving lesson sounds like it went ok. Most of what he describes pretty much sums up my first lesson, so I'm not overly worried. He's on mum's insurance now, so I'll be taking him out (in her car) for some practicing Real Soon Now.

Apologies if you have read this somewhere else. Mum copy pasted an email I sent out about this to her friends list on LJ and facebook, so I will be repeating a lot of it. It's rather long, please bare bear stay with me.

rambling )

We were seen quickly by a consultant Mr Williamson who was utterly lovely and spent a good half hour with us, telling us actually very little in terms of hard fact, but making us feel better anyway )

Each hospital has its downsides.

In which I wibble prematurely about the logistics of various hospitals )

So anyway, the registrar is chasing down mum's results and then we should have a plan. A follow up appointment has been booked for the same clinic next week, though tomorrow (Friday) will tell us whether or not we'll make it to that appointment. Basically, when they get the results tomorrow, if it turns out to be one of a list of uber bad (as opposed to just really bad) (he didn't tell us what was on that list) then we'll get a call in the morning telling us to get to a hospital (the Marsden or St Georges) ASAP to start treatment immediately... which is pretty damn scary to contemplate. If that happens then we won't need to make the appointment next Thursday.

Long brain dump so far, sorry. There's still some to go.

Macmillan nurse and dietician )

Came back, and in between making a nusance of myself by making mum eat every two hours, I've made all the phonecalls to tell people how she is, written emails for other people, shopped and cooked. Now I'm very tired and grumpy, and still rather worried actually. Mum's feeling a bit better today in that she was convinced they'd tell her she would die tomorrow, which they didn't. Not in the physical sense though, as she's been hugely sick tonight (she thinks it's caused by the new painkillers, which were subbed for the co-codomol which was giving her nightmares). Hopefully we'll get the GP (who we're seeing tomorrow) to give us yet another prescription for painkillers and we can find something that works without making mum too sleepy or sick. And hopefully she got some nutrition out of the food I made her eat before she threw it all up again.

Up early for GP tomorrow, and then if there's no urgent "get here now" call by lunchtime I'll meander back to Canterbury for two days of R&R (and things that actually need to be done) before coming back here again.

Feeling pretty low and tired right now. Hopefully some sleep and time in Canterbury will help with that. And if we get the urgent call, then I'll be seeing ben regardless and that may help too.

ETA: I appear to be addicted to parentheses. Wonder if I should be concerned.

ETA2: Oops. Entry 1700 words. I've written actual academic essays shorter.

ETA3: Have a cold. Most unimpressed.

ETA: 12/07/11 No longer filtered
lizziec: (cartoon penguins stealing sanity)
First things first, Phil's first driving lesson sounds like it went ok. Most of what he describes pretty much sums up my first lesson, so I'm not overly worried. He's on mum's insurance now, so I'll be taking him out (in her car) for some practicing Real Soon Now.

Apologies if you have read this somewhere else. Mum copy pasted an email I sent out about this to her friends list on LJ and facebook, so I will be repeating a lot of it. It's rather long, please bare bear stay with me.

rambling )

We were seen quickly by a consultant Mr Williamson who was utterly lovely and spent a good half hour with us, telling us actually very little in terms of hard fact, but making us feel better anyway )

Each hospital has its downsides.

In which I wibble prematurely about the logistics of various hospitals )

So anyway, the registrar is chasing down mum's results and then we should have a plan. A follow up appointment has been booked for the same clinic next week, though tomorrow (Friday) will tell us whether or not we'll make it to that appointment. Basically, when they get the results tomorrow, if it turns out to be one of a list of uber bad (as opposed to just really bad) (he didn't tell us what was on that list) then we'll get a call in the morning telling us to get to a hospital (the Marsden or St Georges) ASAP to start treatment immediately... which is pretty damn scary to contemplate. If that happens then we won't need to make the appointment next Thursday.

Long brain dump so far, sorry. There's still some to go.

Macmillan nurse and dietician )

Came back, and in between making a nusance of myself by making mum eat every two hours, I've made all the phonecalls to tell people how she is, written emails for other people, shopped and cooked. Now I'm very tired and grumpy, and still rather worried actually. Mum's feeling a bit better today in that she was convinced they'd tell her she would die tomorrow, which they didn't. Not in the physical sense though, as she's been hugely sick tonight (she thinks it's caused by the new painkillers, which were subbed for the co-codomol which was giving her nightmares). Hopefully we'll get the GP (who we're seeing tomorrow) to give us yet another prescription for painkillers and we can find something that works without making mum too sleepy or sick. And hopefully she got some nutrition out of the food I made her eat before she threw it all up again.

Up early for GP tomorrow, and then if there's no urgent "get here now" call by lunchtime I'll meander back to Canterbury for two days of R&R (and things that actually need to be done) before coming back here again.

Feeling pretty low and tired right now. Hopefully some sleep and time in Canterbury will help with that. And if we get the urgent call, then I'll be seeing ben regardless and that may help too.

ETA: I appear to be addicted to parentheses. Wonder if I should be concerned.

ETA2: Oops. Entry 1700 words. I've written actual academic essays shorter.

ETA3: Have a cold. Most unimpressed.

ETA: 12/07/11 No longer filtered
lizziec: (animals - gerbil - stan eating)
I slept the clock around last night. I'd gone to bed at 1am on Sunday night and got up at 5:30 and was clearly shattered by the end of the day as I fell asleep at about 10pm and woke up at around 10am, feeling much better, though from there I've become progressively fed up, grumpy and down. I suppose it's just one of those days.

Mum was released from the Day Surgery Unit at around 2 or 3pm yesterday feeling "as if [she] could run a mile". I suppose that's uber hospital drugs for you. The doctor took several samples of the tumour and while he was there he cleared out a bunch of gunk (mostly pus as I understand it) from mum's sinuses, so she feels much less congested at least, though it hasn't helped with any of the major tumour symptoms (the numbness and muscle weakness in her face, eye, nose, mouth; difficulty eating; deafness in one ear; shaking [a newish symptom] etc), it has slowed the perma-nosebleed to almost nothing, which I think is a great relief to us. Mr Tesco delivered some supplies with the groceries (namely micropore and gauze) so if it starts again we can rig up our own nose sling in imitation of the one they rigged up for mum yesterday at the hospital.

Results of the biopsy are due Thursday and my aunt (who has worked at St Georges and still volunteers there) told me yesterday that she was arranging everything. She's scouted out the best dropping off place, is arranging for a wheelchair to meet us there in case mum's unsteady on her feet (she's needed a wheelchair the last two times we've been to hospital) and tracked down the medical receptionist/admin type person who deals with the specific clinic and they're making sure that everything that is needed is there as a favour to my aunt. I guess knowing someone really can make a difference, and let's be frank - having a medical receptionist/secretary/admin person on your side can make a real difference.

While mum was feeling good I managed to have a couple of conversations with her about stuff that needed to be done, people to see and phone calls to make. It was apparently the perfect time as she felt like listening and was also feeling pessmistic about her prognosis, which while not ideal, meant that she gave some of my ideas the thought they at least deserved.

Got a response from Careline (attached to Diabetes UK) today, who I contacted yesterday with a panicked enquiry about the stupid diabetic nurses' comments that all weight loss was good when it came to type 2. Careline basically agreed with Macmillan (and directed me to them) about how uncontrolled, cancer related weight loss is bad and mum should see about getting referred to a proper, specialist dietician as a priority. It's been added to a list of things to ask her GP about when she next sees him (along with asking for different/better anti-emetics as the ones she has don't seem to work well and make her very sleepy). Take that stupid diabetes nurse!

As I mentioned I seem to have spent a good deal of this afternoon getting wound up with various things and increasingly fed up. Not entirely sure why everything is getting to me today, but it's not helpful. At one point I had a long list of things I was annoyed and fed up about. Thankfully reeling the list off to [livejournal.com profile] benc over the phone and a lesser list to [livejournal.com profile] red_pill in person helped a little.

Pondering going home (Canterbury) on Thursday night, but it all depends on what happens on Thursday's ENT appointment. I'm finding it difficult to see past that at the moment, which I suppose (looking at it objectively) isn't helping my mood much.

Phil's first driving lesson tomorrow, which is rather scary. Coulsdon and Wallington, you have been warned. Stay off the roads :P

ETA: 12/07/11 No longer filtered
lizziec: (animals - gerbil - stan eating)
I slept the clock around last night. I'd gone to bed at 1am on Sunday night and got up at 5:30 and was clearly shattered by the end of the day as I fell asleep at about 10pm and woke up at around 10am, feeling much better, though from there I've become progressively fed up, grumpy and down. I suppose it's just one of those days.

Mum was released from the Day Surgery Unit at around 2 or 3pm yesterday feeling "as if [she] could run a mile". I suppose that's uber hospital drugs for you. The doctor took several samples of the tumour and while he was there he cleared out a bunch of gunk (mostly pus as I understand it) from mum's sinuses, so she feels much less congested at least, though it hasn't helped with any of the major tumour symptoms (the numbness and muscle weakness in her face, eye, nose, mouth; difficulty eating; deafness in one ear; shaking [a newish symptom] etc), it has slowed the perma-nosebleed to almost nothing, which I think is a great relief to us. Mr Tesco delivered some supplies with the groceries (namely micropore and gauze) so if it starts again we can rig up our own nose sling in imitation of the one they rigged up for mum yesterday at the hospital.

Results of the biopsy are due Thursday and my aunt (who has worked at St Georges and still volunteers there) told me yesterday that she was arranging everything. She's scouted out the best dropping off place, is arranging for a wheelchair to meet us there in case mum's unsteady on her feet (she's needed a wheelchair the last two times we've been to hospital) and tracked down the medical receptionist/admin type person who deals with the specific clinic and they're making sure that everything that is needed is there as a favour to my aunt. I guess knowing someone really can make a difference, and let's be frank - having a medical receptionist/secretary/admin person on your side can make a real difference.

While mum was feeling good I managed to have a couple of conversations with her about stuff that needed to be done, people to see and phone calls to make. It was apparently the perfect time as she felt like listening and was also feeling pessmistic about her prognosis, which while not ideal, meant that she gave some of my ideas the thought they at least deserved.

Got a response from Careline (attached to Diabetes UK) today, who I contacted yesterday with a panicked enquiry about the stupid diabetic nurses' comments that all weight loss was good when it came to type 2. Careline basically agreed with Macmillan (and directed me to them) about how uncontrolled, cancer related weight loss is bad and mum should see about getting referred to a proper, specialist dietician as a priority. It's been added to a list of things to ask her GP about when she next sees him (along with asking for different/better anti-emetics as the ones she has don't seem to work well and make her very sleepy). Take that stupid diabetes nurse!

As I mentioned I seem to have spent a good deal of this afternoon getting wound up with various things and increasingly fed up. Not entirely sure why everything is getting to me today, but it's not helpful. At one point I had a long list of things I was annoyed and fed up about. Thankfully reeling the list off to [livejournal.com profile] benc over the phone and a lesser list to [livejournal.com profile] red_pill in person helped a little.

Pondering going home (Canterbury) on Thursday night, but it all depends on what happens on Thursday's ENT appointment. I'm finding it difficult to see past that at the moment, which I suppose (looking at it objectively) isn't helping my mood much.

Phil's first driving lesson tomorrow, which is rather scary. Coulsdon and Wallington, you have been warned. Stay off the roads :P

ETA: 12/07/11 No longer filtered
lizziec: (Stargate SG1 Jack O'Neill (two l's ;)))
Currently hiding away in a Starbucks in Croydon while mum is having the biopsy done at the day surgery unit. I left her at about 9am when they took her through to pre-op, which was further than I was allowed to go, though apparently they didn't think she would actually be done until about 11ish.

Taking anti sickness pills didn't seem to work as this morning mum was sick on arriving at the hospital, though thankfully into the bowl I've been carring in the car rather than getting it on the car. Ended up taking her up to the DSU in a wheelchair though, as it left her very weak. Despite telling staff on Friday, and reminding them numerous times this morning that mum is mostly deaf in one ear now and telling them which side to speak to, they kept talking to her on her deaf side, with one nurse whispering her questions into that ear and then wondering why mum didn't respond. Gah.

They're going to use two anaesthetists, which worried me (and I think mum too - she said she wondered if they thought there was another tumour in her throat), though people on irc tell me it's actually quite usual, so I'm a bit more chilled than I was when I left her.

Found out today that the pretty useless diabetic nurse who I was annoyed at anyway told mum last week that all weight loss was good, which left me quite grrrry. It came up because I noticed when doing up mum's hospital gown that it was much looser than last time she had a biopsy. Last time it was fairly tight at the top on the loosest tie they had there, and didn't do up at the back. This time it was loose even on the tightest tie they had there and left no gap at the back. It was a really obvious sign to me of the speed at which she is losing weight at the moment, which is why I keep quietly and not so quietly wibbling about it.

I ended up calling Macmillan (thankfully calls to them are free on major mobile networks) when I got out to the car and wibbled at a cancer nurse there for half an hour. She said that while weight loss may be good from a diabetes pov "this (cancer/not eating/not keeping stuff down) is not how she should be losing weight" and agreed that she probably needs more calories than she's getting/keeping down. The Macmillan lady said I should push for mum to see a nutritionist, though she said that someone would probably refer mum anyway at some point. She also said to be realistic (because of mum's mouth problems she can't eat much veg, or fruit [down to soft fruits like bananas and raspberries, even strawberries are now too hard]) that mum wasn't going to get her five a day and I shouldn't worry about that too much, but to get her to eat what fruit and veg she could. She also said that I should give mum high fat (i.e. regular, rather than diet) food, and aim to keep the sugar in the food down, which sounds like good advice as far as getting calories into her but without messing up her blood sugar too much. At least, I hope it's good advice. It sounded it. Depending on what happens this week I'll try to get mum to her GP and explain (or get her to explain) I'm concerned about mum's eating and weight loss. Hopefully he'll be less blinkered by "losing weight good for type 2 diabetes" :/

ETA: 12/07/11 No longer filtered
lizziec: (Stargate SG1 Jack O'Neill (two l's ;)))
Currently hiding away in a Starbucks in Croydon while mum is having the biopsy done at the day surgery unit. I left her at about 9am when they took her through to pre-op, which was further than I was allowed to go, though apparently they didn't think she would actually be done until about 11ish.

Taking anti sickness pills didn't seem to work as this morning mum was sick on arriving at the hospital, though thankfully into the bowl I've been carring in the car rather than getting it on the car. Ended up taking her up to the DSU in a wheelchair though, as it left her very weak. Despite telling staff on Friday, and reminding them numerous times this morning that mum is mostly deaf in one ear now and telling them which side to speak to, they kept talking to her on her deaf side, with one nurse whispering her questions into that ear and then wondering why mum didn't respond. Gah.

They're going to use two anaesthetists, which worried me (and I think mum too - she said she wondered if they thought there was another tumour in her throat), though people on irc tell me it's actually quite usual, so I'm a bit more chilled than I was when I left her.

Found out today that the pretty useless diabetic nurse who I was annoyed at anyway told mum last week that all weight loss was good, which left me quite grrrry. It came up because I noticed when doing up mum's hospital gown that it was much looser than last time she had a biopsy. Last time it was fairly tight at the top on the loosest tie they had there, and didn't do up at the back. This time it was loose even on the tightest tie they had there and left no gap at the back. It was a really obvious sign to me of the speed at which she is losing weight at the moment, which is why I keep quietly and not so quietly wibbling about it.

I ended up calling Macmillan (thankfully calls to them are free on major mobile networks) when I got out to the car and wibbled at a cancer nurse there for half an hour. She said that while weight loss may be good from a diabetes pov "this (cancer/not eating/not keeping stuff down) is not how she should be losing weight" and agreed that she probably needs more calories than she's getting/keeping down. The Macmillan lady said I should push for mum to see a nutritionist, though she said that someone would probably refer mum anyway at some point. She also said to be realistic (because of mum's mouth problems she can't eat much veg, or fruit [down to soft fruits like bananas and raspberries, even strawberries are now too hard]) that mum wasn't going to get her five a day and I shouldn't worry about that too much, but to get her to eat what fruit and veg she could. She also said that I should give mum high fat (i.e. regular, rather than diet) food, and aim to keep the sugar in the food down, which sounds like good advice as far as getting calories into her but without messing up her blood sugar too much. At least, I hope it's good advice. It sounded it. Depending on what happens this week I'll try to get mum to her GP and explain (or get her to explain) I'm concerned about mum's eating and weight loss. Hopefully he'll be less blinkered by "losing weight good for type 2 diabetes" :/

ETA: 12/07/11 No longer filtered
lizziec: (NCIS gibbs abby protection)
Got to Mayday for the hastily arranged ENT appointment about half an hour early and were seen immediately by the doctor. I can't say I was overly impressed with his bedside manner, though it improved some way into the appointment where we reached a mutual understanding. A little more on that further in.

To start with the doctor was very brisk, and wanted to know mum's history with this problem starting from the beginning which upset and frustrated her, so I'm not sure he got a complete picture. Then without any prep time at all went to stick a camera up her nose to see what was going on up there, which completely understandably completely upset mum. She started to cry and said that she hadn't expected that - which was fair as we were just told to be there, no details more than that - and the doctor got kind of frustrated and said that he'd only been handed the case the evening before and had squeezed us into his clinic as a favour to the Neurologist that mum had seen before and was seeing lots more patients in clinic today than he had timeslots for. I guess that explains why we got seen as soon as we got there rather than at a specific time. After we understood he was rushed and he understood mum was scared and uninformed about what the appointment would involve he became much better bedside manner wise. It's a shame it took tears and stuff to get to that point.

He had a go at getting the camera up mum's left nostril, but it didn't go very far as he kept hitting something which I believe was the tumour (he got mum to have a go at blowing her nose, but the blockage didn't move at all), and the attempt looked like it hurt an awful lot (judging by the way mum gripped my hand). It went fine up the right nostril, and appeared to hurt mum much less.

He appeared rather concerned and disappeared for a bit to arrange some things, and then came back to his office to make calls to further arrange things while we were in there. It amused me to hear him sweet talking nurses in much the same way I sweet talk people when I need something.

Anyway, he'd thought that the tumour needed biopsying asap and managed to squeeze mum into his Monday morning list for a biopsy under a general anaesthetic. The rest of the time at the hospital involved heading to the day surgery ward to get pre-admitted and see an anaesthetist (though not the one who'll be doing mum tomorrow) to be checked anaesthetic wise. Was informed that the major risk is that it doesn't stop bleeding after the biopsy is taken and if that happens her nose (through which the biopsy is being taken) will be packed and she'll be sent from Mayday (in Croydon, where all the appointments so far have been, and where the biopsy will be done tomorrow) to St Georges (in Tooting) to be admitted. Really hope that won't happen, but am pondering putting a bag of jammies and washing supplies in the car tomorrow morning just in case, in the hope being prepared will ward off problems.

The follow up to the biopsy will be at St Georges, where the doctor is actually based. He told us how to get there by public transport as he explained that the parking situation (and traffic on the way) is pretty bad, even for him. It was good of him to explain the transport options but I really don't think that mum is up to public transport at the moment. She had a turn while at Mayday on Friday and needed a wheelchair to get her out to the car again. Managed to sort out alternative arrangements that don't involve public transport, thankfully. My auntie and uncle live very very close (a mile or so) to St Georges, and my auntie has worked there (and still volunteers there) so we'll be parking the car at their house and my uncle will drop us off and pick us up, avoiding, hopefully, the parking problems at the hospital without exhausting mum.

All told, it looks like we'll know by Thursday afternoon what the tumour is and some sort of prognosis. The doctor on Friday didn't tell us at all about the MRI and what it showed, though I know he had the report in mum's file, but I know that between inital diagnosis of the tumour and now she is much much worse. Her left eye is completely non-functional, the huge nosebleeds every couple of weeks have evolved into a continuous drip/dribble of blood, she's almost deaf in her left ear and eating has become more of a challenge. Almost the entirety of the left hand side of her face is numb and tingly now, and the nausea and vomiting is worse. The anaesthetist we saw on Friday suggested mum start taking the anti sick pills at night as a matter of course to hopefully ward off the worst of it.

Off to Coulsdon again soon. We have to be at the hospital for 7:30 am tomorrow, which is quite unholy. I decided I'd rather sleep at mum's and get up early than sleep here and get up in what is essentially the middle of the night and drive there then. I think tomorrow will be quite long enough without starting at 4am. All the same, leaving here for Coulsdon is getting harder each week, though I'm not sure whether it's because I'm eating into my mood/spoons reserves each time I spend a week there, or because the situation is getting harder in itself.

ETA: 12/07/11 No longer filtered
lizziec: (NCIS gibbs abby protection)
Got to Mayday for the hastily arranged ENT appointment about half an hour early and were seen immediately by the doctor. I can't say I was overly impressed with his bedside manner, though it improved some way into the appointment where we reached a mutual understanding. A little more on that further in.

To start with the doctor was very brisk, and wanted to know mum's history with this problem starting from the beginning which upset and frustrated her, so I'm not sure he got a complete picture. Then without any prep time at all went to stick a camera up her nose to see what was going on up there, which completely understandably completely upset mum. She started to cry and said that she hadn't expected that - which was fair as we were just told to be there, no details more than that - and the doctor got kind of frustrated and said that he'd only been handed the case the evening before and had squeezed us into his clinic as a favour to the Neurologist that mum had seen before and was seeing lots more patients in clinic today than he had timeslots for. I guess that explains why we got seen as soon as we got there rather than at a specific time. After we understood he was rushed and he understood mum was scared and uninformed about what the appointment would involve he became much better bedside manner wise. It's a shame it took tears and stuff to get to that point.

He had a go at getting the camera up mum's left nostril, but it didn't go very far as he kept hitting something which I believe was the tumour (he got mum to have a go at blowing her nose, but the blockage didn't move at all), and the attempt looked like it hurt an awful lot (judging by the way mum gripped my hand). It went fine up the right nostril, and appeared to hurt mum much less.

He appeared rather concerned and disappeared for a bit to arrange some things, and then came back to his office to make calls to further arrange things while we were in there. It amused me to hear him sweet talking nurses in much the same way I sweet talk people when I need something.

Anyway, he'd thought that the tumour needed biopsying asap and managed to squeeze mum into his Monday morning list for a biopsy under a general anaesthetic. The rest of the time at the hospital involved heading to the day surgery ward to get pre-admitted and see an anaesthetist (though not the one who'll be doing mum tomorrow) to be checked anaesthetic wise. Was informed that the major risk is that it doesn't stop bleeding after the biopsy is taken and if that happens her nose (through which the biopsy is being taken) will be packed and she'll be sent from Mayday (in Croydon, where all the appointments so far have been, and where the biopsy will be done tomorrow) to St Georges (in Tooting) to be admitted. Really hope that won't happen, but am pondering putting a bag of jammies and washing supplies in the car tomorrow morning just in case, in the hope being prepared will ward off problems.

The follow up to the biopsy will be at St Georges, where the doctor is actually based. He told us how to get there by public transport as he explained that the parking situation (and traffic on the way) is pretty bad, even for him. It was good of him to explain the transport options but I really don't think that mum is up to public transport at the moment. She had a turn while at Mayday on Friday and needed a wheelchair to get her out to the car again. Managed to sort out alternative arrangements that don't involve public transport, thankfully. My auntie and uncle live very very close (a mile or so) to St Georges, and my auntie has worked there (and still volunteers there) so we'll be parking the car at their house and my uncle will drop us off and pick us up, avoiding, hopefully, the parking problems at the hospital without exhausting mum.

All told, it looks like we'll know by Thursday afternoon what the tumour is and some sort of prognosis. The doctor on Friday didn't tell us at all about the MRI and what it showed, though I know he had the report in mum's file, but I know that between inital diagnosis of the tumour and now she is much much worse. Her left eye is completely non-functional, the huge nosebleeds every couple of weeks have evolved into a continuous drip/dribble of blood, she's almost deaf in her left ear and eating has become more of a challenge. Almost the entirety of the left hand side of her face is numb and tingly now, and the nausea and vomiting is worse. The anaesthetist we saw on Friday suggested mum start taking the anti sick pills at night as a matter of course to hopefully ward off the worst of it.

Off to Coulsdon again soon. We have to be at the hospital for 7:30 am tomorrow, which is quite unholy. I decided I'd rather sleep at mum's and get up early than sleep here and get up in what is essentially the middle of the night and drive there then. I think tomorrow will be quite long enough without starting at 4am. All the same, leaving here for Coulsdon is getting harder each week, though I'm not sure whether it's because I'm eating into my mood/spoons reserves each time I spend a week there, or because the situation is getting harder in itself.

ETA: 12/07/11 No longer filtered
lizziec: (cartoon elephant)
Call from Mayday this afternoon. They want mum in the ENT clinic at 10am tomorrow (Friday). I'm guessing, though I don't know for certain, this is to do with following up the MRI she had on Wednesday. I don't know if it's that they have a diagnosis though, or that they will be doing a biopsy on the tumour on and behind her cheekbone. I guess we'll find out when we get there.

ETA: 12/07/11 No longer filtered
lizziec: (cartoon elephant)
Call from Mayday this afternoon. They want mum in the ENT clinic at 10am tomorrow (Friday). I'm guessing, though I don't know for certain, this is to do with following up the MRI she had on Wednesday. I don't know if it's that they have a diagnosis though, or that they will be doing a biopsy on the tumour on and behind her cheekbone. I guess we'll find out when we get there.

ETA: 12/07/11 No longer filtered
lizziec: (sheep baa)
Toddled off to Mayday earlier to get the MRI done. I drove as carefully as I could, possibly my best and smoothest driving for ever as mum was feeling extremely nauseous and I really didn't want her being sick on the way (though we have an emesis basin in the car permanently atm just in case) as that would have been distressing for us both and we didn't need that. I (and she) made it \o/ Trying to drive smoothly makes it clear how awful the roads are at the moment though :(

Anyway, the MRI suite at Mayday smelled of paint and white spirit and was incredibly disorganised, with no signs telling us where it was. It turns out that the reason why is because they're still decorating, having moved in (from a portacabin on the hospital site somewhere) either Tuesday or today (Wednesday). After signing in and doing paperwork we waited for 50 mins, then I asked a member of staff who was passing how much longer it was likely to be. I was very polite and not mean or anything. Mostly I was just worried about whether or not I'd have to put more money on the car parking. Anyway, after asking someone mum was taken back for the MRI almost straight away. From them taking her back to her returning to me took about 55 mins. Got back to the car the minute the ticket expired. Not bad timing really. The MRI people said that they would have to write a report and would then ask mum to come back for more imaging (which I guess means another MRI or CT or something?) or she'd be called in to see her consultant. Now I guess we have to wait to see what the MRI shows. After the first CT scan mum was called back within 2 working days when it showed up a tumour, so hopefully the turnaround on the MRI will be as quick and we will find out where the primary tumour is hiding. If they can't pinpoint it using the MRI, they'll be biopsying the tumour on and behind her cheekbone. Ah, now I'm repeating myself. My apologies. The MRI today was of her head and neck.

Meanwhile, as well as the nausea and vomiting problems that I talked about last post, and the loss of appetite, the tumour appears to be causing various other distressing problems. One of the main ones is making mum vulnerable to infections - she's being treated for her second UTI in four weeks at the moment, which makes me nervous when I get a sore throat or anything. If it's a cold and I pass it along to her, I have no idea what the consequences would be. Another is nosebleeds. I guess it's the way the tumour is pressing on stuff, though I don't really know. She's had a few enormous nose bleeds that have lasted for ages (though [thankfully?] I've yet to be around for one), and on friday night she asked Phil to call an ambulance for her because the loss of blood was so sudden and dramatic (she thought it had stopped and it suddenly started again with a vengeance). Thankfully they were able to treat her at home, but it's another of those things that makes me realise how vulnerable the tumour(s) are making her, and not just in the obvious "she has cancer" sort of ways.

Cut, a ramble in which I moan about trying to get a prescription filled at half past six on a weekday in Greater London )

Since the first UTI she's been drinking a glass of cranberry juice a day. Is there anything else we can do to ward off the dreaded cystitis or is that about it? Also, is reduced sugar cranberry juice less effective or the same effective as regular when it comes to warding infections off? Does cranberry juice even work? Obviously for the comfort of everyone concerned we'd like to keep them to a minimum, hence the cranberry juice. It doesn't seem to have worked that well though :/

After my last LJ entry, [livejournal.com profile] red_pill sweetly said he'd deal with vomit as he has no particular problem with it, which is very sweet of him. I think we've decided that if he is around, he will deal with it, and if I'm the only one around then I'll grit my teeth and deal with it as best I can. Hopefully I will continue to be successful in keeping my own tummy contents in.

I should go to bed. It's very late as I've been writing this (and spent two hours bitching on twitter about the inadequacies of our legislative process with regards to the Digital Economy Bill) and [livejournal.com profile] bethanthepurple is visiting tomorrow (at least, as long as the hospital don't call us in on short notice), so I'd like to at least be a little alert for that ;)

ETA: 12/07/11 No longer filtered
lizziec: (sheep baa)
Toddled off to Mayday earlier to get the MRI done. I drove as carefully as I could, possibly my best and smoothest driving for ever as mum was feeling extremely nauseous and I really didn't want her being sick on the way (though we have an emesis basin in the car permanently atm just in case) as that would have been distressing for us both and we didn't need that. I (and she) made it \o/ Trying to drive smoothly makes it clear how awful the roads are at the moment though :(

Anyway, the MRI suite at Mayday smelled of paint and white spirit and was incredibly disorganised, with no signs telling us where it was. It turns out that the reason why is because they're still decorating, having moved in (from a portacabin on the hospital site somewhere) either Tuesday or today (Wednesday). After signing in and doing paperwork we waited for 50 mins, then I asked a member of staff who was passing how much longer it was likely to be. I was very polite and not mean or anything. Mostly I was just worried about whether or not I'd have to put more money on the car parking. Anyway, after asking someone mum was taken back for the MRI almost straight away. From them taking her back to her returning to me took about 55 mins. Got back to the car the minute the ticket expired. Not bad timing really. The MRI people said that they would have to write a report and would then ask mum to come back for more imaging (which I guess means another MRI or CT or something?) or she'd be called in to see her consultant. Now I guess we have to wait to see what the MRI shows. After the first CT scan mum was called back within 2 working days when it showed up a tumour, so hopefully the turnaround on the MRI will be as quick and we will find out where the primary tumour is hiding. If they can't pinpoint it using the MRI, they'll be biopsying the tumour on and behind her cheekbone. Ah, now I'm repeating myself. My apologies. The MRI today was of her head and neck.

Meanwhile, as well as the nausea and vomiting problems that I talked about last post, and the loss of appetite, the tumour appears to be causing various other distressing problems. One of the main ones is making mum vulnerable to infections - she's being treated for her second UTI in four weeks at the moment, which makes me nervous when I get a sore throat or anything. If it's a cold and I pass it along to her, I have no idea what the consequences would be. Another is nosebleeds. I guess it's the way the tumour is pressing on stuff, though I don't really know. She's had a few enormous nose bleeds that have lasted for ages (though [thankfully?] I've yet to be around for one), and on friday night she asked Phil to call an ambulance for her because the loss of blood was so sudden and dramatic (she thought it had stopped and it suddenly started again with a vengeance). Thankfully they were able to treat her at home, but it's another of those things that makes me realise how vulnerable the tumour(s) are making her, and not just in the obvious "she has cancer" sort of ways.

Cut, a ramble in which I moan about trying to get a prescription filled at half past six on a weekday in Greater London )

Since the first UTI she's been drinking a glass of cranberry juice a day. Is there anything else we can do to ward off the dreaded cystitis or is that about it? Also, is reduced sugar cranberry juice less effective or the same effective as regular when it comes to warding infections off? Does cranberry juice even work? Obviously for the comfort of everyone concerned we'd like to keep them to a minimum, hence the cranberry juice. It doesn't seem to have worked that well though :/

After my last LJ entry, [livejournal.com profile] red_pill sweetly said he'd deal with vomit as he has no particular problem with it, which is very sweet of him. I think we've decided that if he is around, he will deal with it, and if I'm the only one around then I'll grit my teeth and deal with it as best I can. Hopefully I will continue to be successful in keeping my own tummy contents in.

I should go to bed. It's very late as I've been writing this (and spent two hours bitching on twitter about the inadequacies of our legislative process with regards to the Digital Economy Bill) and [livejournal.com profile] bethanthepurple is visiting tomorrow (at least, as long as the hospital don't call us in on short notice), so I'd like to at least be a little alert for that ;)

ETA: 12/07/11 No longer filtered
lizziec: (MASH - Hawkeye Trapper bromance)
Yesterday was a much better day for me and I didn't cry once. I think it's because I was so busy and actually getting things done, which gave me something to channel my anxiety in to.

Mum and I were waiting for a call from the hospital to say to come in for an MRI, as they could only do her yesterday if there was a cancellation, so we were on standby all day. (Aside, they wanted to do the MRI on Thursday when mum had an epic day at the hospital bouncing between various doctors and tests, but by the time the MRI was proposed she'd been at the hospital for 6ish hours and not eaten yet and had had enough, so it was postponed.)

Anyway, we made use of the day to do a few errands, because mum had woken up feeling good (for her, at the moment) and headed out about half 10. First we went to Matalan because they have an offer on jammies and mum's sick of the ones she's been wearing nearly continuously for about 8 weeks now. She also got some other stuff, including some single bed sheets - more on that in a minute!

Checked she wasn't too tired and decided to press on to Croydon proper for a little more shopping. Got some more jammies for her, and a nighty for me, then left her to sit for a bit and regain some energy while I pressed on to Reeves of Croydon who had a single bed I was interested in.

Basically I've been sleeping on the floor of the spare room for the last couple of nights and mum and I decided that a proper bed for in here would be desireable if I'm going to be spending more time here. It means I have my own space, though I definitely had to work for it (it was a typical spare room type of mess, so [livejournal.com profile] red_pill and I spent a good five hours or so last night cleaning it out and up).

Reeves were amazing. If anyone is reading this, lives in the area and needs furniture I cannot recommend them enough. I explained the situation and they arranged to have it delivered today for their standard charge (about half the price of the next day charge).

That's the reason we needed single bed sheets in a hurry. Mum and Phil are both in double beds (which absolutely will not fit in the spare room) and cleared all the single bedding out a few months ago. D'oh! We seem to be mostly bedding enabled now though.

Finished up the Croydon wanderings with mum by going to Nandos for tasty chicken (and mum managed to eat all of her chicken portion (though not much rice), which is brilliant, because she's not eating much at all at the moment and didn't think she'd manage a whole portion of chicken) and Surrey Street market for strawberries and rasperries for later, as they're one of the few fruits mum can manage at the moment (the others being bananas and grapes).

She was tired out by all that, but said her soul felt somewhat replenshed, which must be pretty important right now. In the end, we didn't get a call to come in for an MRI, so I guess that now won't happen until after the weekend.

Managed to do some food shopping a bit later, which led to me clearing out and cleaning the fridge, which needed doing pretty badly. In the middle of that particular chaos, mum's (boy/man)friend, Duncan arrived to visit her, which I think also helped with the recharging of batteries somewhat.

Phil and I finished cleaning out and up the spare room about 1am and I'm still rather tired now, but pleased with the practical difference I made yesterday, which I think is why I'm doing a bit better today (and had a good day yesterday). I know it probably won't last, but I think I'll cherish it while it's happening.

Should get back to Canterbury sometime this afternoon/evening hopefully. I'm going to wait till the bed's been delivered and put together, then I'm coming home for a day and a half before coming back on Monday, which should hopefully help recharge my batteries.

ETA: I'm finally going through comments you've posted in the last few days/weeks and replying. Sorry it's taken me so long :) I really do appreciate everything you have collectively said. The comments mean a lot to me. X

ETA: 12/07/11 No longer filtered
lizziec: (MASH - Hawkeye Trapper bromance)
Yesterday was a much better day for me and I didn't cry once. I think it's because I was so busy and actually getting things done, which gave me something to channel my anxiety in to.

Mum and I were waiting for a call from the hospital to say to come in for an MRI, as they could only do her yesterday if there was a cancellation, so we were on standby all day. (Aside, they wanted to do the MRI on Thursday when mum had an epic day at the hospital bouncing between various doctors and tests, but by the time the MRI was proposed she'd been at the hospital for 6ish hours and not eaten yet and had had enough, so it was postponed.)

Anyway, we made use of the day to do a few errands, because mum had woken up feeling good (for her, at the moment) and headed out about half 10. First we went to Matalan because they have an offer on jammies and mum's sick of the ones she's been wearing nearly continuously for about 8 weeks now. She also got some other stuff, including some single bed sheets - more on that in a minute!

Checked she wasn't too tired and decided to press on to Croydon proper for a little more shopping. Got some more jammies for her, and a nighty for me, then left her to sit for a bit and regain some energy while I pressed on to Reeves of Croydon who had a single bed I was interested in.

Basically I've been sleeping on the floor of the spare room for the last couple of nights and mum and I decided that a proper bed for in here would be desireable if I'm going to be spending more time here. It means I have my own space, though I definitely had to work for it (it was a typical spare room type of mess, so [livejournal.com profile] red_pill and I spent a good five hours or so last night cleaning it out and up).

Reeves were amazing. If anyone is reading this, lives in the area and needs furniture I cannot recommend them enough. I explained the situation and they arranged to have it delivered today for their standard charge (about half the price of the next day charge).

That's the reason we needed single bed sheets in a hurry. Mum and Phil are both in double beds (which absolutely will not fit in the spare room) and cleared all the single bedding out a few months ago. D'oh! We seem to be mostly bedding enabled now though.

Finished up the Croydon wanderings with mum by going to Nandos for tasty chicken (and mum managed to eat all of her chicken portion (though not much rice), which is brilliant, because she's not eating much at all at the moment and didn't think she'd manage a whole portion of chicken) and Surrey Street market for strawberries and rasperries for later, as they're one of the few fruits mum can manage at the moment (the others being bananas and grapes).

She was tired out by all that, but said her soul felt somewhat replenshed, which must be pretty important right now. In the end, we didn't get a call to come in for an MRI, so I guess that now won't happen until after the weekend.

Managed to do some food shopping a bit later, which led to me clearing out and cleaning the fridge, which needed doing pretty badly. In the middle of that particular chaos, mum's (boy/man)friend, Duncan arrived to visit her, which I think also helped with the recharging of batteries somewhat.

Phil and I finished cleaning out and up the spare room about 1am and I'm still rather tired now, but pleased with the practical difference I made yesterday, which I think is why I'm doing a bit better today (and had a good day yesterday). I know it probably won't last, but I think I'll cherish it while it's happening.

Should get back to Canterbury sometime this afternoon/evening hopefully. I'm going to wait till the bed's been delivered and put together, then I'm coming home for a day and a half before coming back on Monday, which should hopefully help recharge my batteries.

ETA: I'm finally going through comments you've posted in the last few days/weeks and replying. Sorry it's taken me so long :) I really do appreciate everything you have collectively said. The comments mean a lot to me. X

ETA: 12/07/11 No longer filtered
lizziec: (Stargate SG1 Daniel Jackson)
I'm up at mum's now. I brought stuff for several days just in case, and some new pj's for mum, cos she was getting sick of the ones she already had.

More news on what's going on.

The tumour appears to be attached to, and on the back of, her left cheekbone. The doctor she saw today thinks that it is a secondary tumour because of the position it is in. Apparently it's super rare for a primary tumour to be in the position that this one is in, so they're currently playing hunt the primary tumour. They did a CT scan of her abdomen today (to go with the one of her head they did last Thursday) and couldn't find it there, so they're going to do an MRI, hopefully tomorrow, in the hope of picking up where it is. If they can't find it, they're going to biopsy the tumour they *can* find as apparently that will tell them where it came from. And then they can decide how to treat it.

When she got back from the hospital she had me call round the list of primary people to keep informed, which I now have written with numbers in a document on my laptop. Everyone was very nice - almost too nice as I was nearly in tears a couple of times and I'm really trying to make sure I don't cry around mum.

I seem to be oscillating between super-organiser, trying to do all the practical stuff I can, and tears, which is most definitely not helpful or practical. Sometimes though my super practical air takes on a rather morbid and unhelpful tone and I start wondering if I should be sorting out Solicitors for will-making and so on, and I know we're not there yet and it's not the right thing to be thinking, but those thoughts keep creeping in.

[livejournal.com profile] red_pill is being awesome, and making me Fajitas for dinner. He's also going to learn to drive, which is very responsible and slightly scary of him. Mum's talking about getting a bed for the spare room after payday, with a view to me having a proper bed to sleep in when I'm here, and some space for just me. Speaking of which, I need to badger Phil and go start clearing that room a little bit together.

Hopefully we'll learn more tomorrow and we can all start to make some sort of a plan for some sort of routine.

Sorry if this entry is rather all over the place, but that pretty much sums up my brain at the moment.

ETA: 12/07/11 No longer filtered
lizziec: (Stargate SG1 Daniel Jackson)
I'm up at mum's now. I brought stuff for several days just in case, and some new pj's for mum, cos she was getting sick of the ones she already had.

More news on what's going on.

The tumour appears to be attached to, and on the back of, her left cheekbone. The doctor she saw today thinks that it is a secondary tumour because of the position it is in. Apparently it's super rare for a primary tumour to be in the position that this one is in, so they're currently playing hunt the primary tumour. They did a CT scan of her abdomen today (to go with the one of her head they did last Thursday) and couldn't find it there, so they're going to do an MRI, hopefully tomorrow, in the hope of picking up where it is. If they can't find it, they're going to biopsy the tumour they *can* find as apparently that will tell them where it came from. And then they can decide how to treat it.

When she got back from the hospital she had me call round the list of primary people to keep informed, which I now have written with numbers in a document on my laptop. Everyone was very nice - almost too nice as I was nearly in tears a couple of times and I'm really trying to make sure I don't cry around mum.

I seem to be oscillating between super-organiser, trying to do all the practical stuff I can, and tears, which is most definitely not helpful or practical. Sometimes though my super practical air takes on a rather morbid and unhelpful tone and I start wondering if I should be sorting out Solicitors for will-making and so on, and I know we're not there yet and it's not the right thing to be thinking, but those thoughts keep creeping in.

[livejournal.com profile] red_pill is being awesome, and making me Fajitas for dinner. He's also going to learn to drive, which is very responsible and slightly scary of him. Mum's talking about getting a bed for the spare room after payday, with a view to me having a proper bed to sleep in when I'm here, and some space for just me. Speaking of which, I need to badger Phil and go start clearing that room a little bit together.

Hopefully we'll learn more tomorrow and we can all start to make some sort of a plan for some sort of routine.

Sorry if this entry is rather all over the place, but that pretty much sums up my brain at the moment.

ETA: 12/07/11 No longer filtered
lizziec: (explosm sad)
Yesterday evening I spent most of my evening in a rather numb daze. It was sort of like shock, but not actually I think. I had a bit of a cry and then picked myself up and was just mostly quiet. Today I woke up feeling quite good, and then I remembered. Now I feel utterly arse and like the bottom has just dropped out of my world. I also think a herd of butterflies has taken up living in my tummy. I feel sick.

Mum's seeing the Neurologist today. She wants to see me later. I've decided I'll take stuff for a few days, then I can either stay there, or come home, as the situation warrants.

Thank you all for the good wishes yesterday. I daresay I'll keep this updated as stuff goes on. More to find out today.

ETA: 12/07/11 No longer filtered
lizziec: (explosm sad)
Yesterday evening I spent most of my evening in a rather numb daze. It was sort of like shock, but not actually I think. I had a bit of a cry and then picked myself up and was just mostly quiet. Today I woke up feeling quite good, and then I remembered. Now I feel utterly arse and like the bottom has just dropped out of my world. I also think a herd of butterflies has taken up living in my tummy. I feel sick.

Mum's seeing the Neurologist today. She wants to see me later. I've decided I'll take stuff for a few days, then I can either stay there, or come home, as the situation warrants.

Thank you all for the good wishes yesterday. I daresay I'll keep this updated as stuff goes on. More to find out today.

ETA: 12/07/11 No longer filtered
lizziec: (me - mummy and little lizzie)
So for those following, the doctors have the results of the scan and it's not too good. They've found a growth behind her nose, and they think it's malignant because of the speed symptoms have appeared and got worse in (about 8 weeks). She will know more tomorrow after she's seen a Neurologist. She said it's not secret, and has told all the people who need to be told in person (though this is locked so she doesn't know I've made this update).

So. Yeah. Please send good thoughts to her please, and if you believe in a deity, prayers would also be appreciated.

ETA: 12/07/11 No longer filtered
lizziec: (me - mummy and little lizzie)
So for those following, the doctors have the results of the scan and it's not too good. They've found a growth behind her nose, and they think it's malignant because of the speed symptoms have appeared and got worse in (about 8 weeks). She will know more tomorrow after she's seen a Neurologist. She said it's not secret, and has told all the people who need to be told in person (though this is locked so she doesn't know I've made this update).

So. Yeah. Please send good thoughts to her please, and if you believe in a deity, prayers would also be appreciated.

ETA: 12/07/11 No longer filtered.
lizziec: (acid)
Today the NHS turns 60, and I want to wish it a very happy birthday and wish it well for the next 60. I know there are plenty of problems with it, I am not blinkered enough to say that there could not be improvements, but I believe that it is one of the greatest achievements of this country, especially in the post-World War II period. Here's why.

In 1900 (that's only 108 years ago) in this country:
* Life expectancy was below 50 years
* 163 out of every 1000 babies born died before they reached the age of 1 (that's 16.3%)
* The majority of families could not afford to see a doctor

The government refused to interfere as the emphasis at this point in time was on a "laissez-faire" country, meaning that things should be left to take their own course. It was believed that interference by the Government would strangle the economy, so generally people were left to sink or swim as they could. During the latter years of the 19th Century, and the early years of the 20th Century many reports began to come out which drew attention to the plight of the poor, which was reinforced by something of a recruitment crisis for the army during the Boer War. Of those who volunteered 35% (over a third) were rejected as medically unfit, generally because of problems related to poverty.

This changed in 1906 when the Liberal Party was elected, with David Lloyd George as their Chancellor of the Exchequor, and what followed was a package of reforms that ultimately led to a constitutional crisis. The reforms included the setting up of Old Age Pensions, free school meals (which went quite some way to tackling malnutrition among the poor), slum clearance programmes and Labour Exchanges (see here for more information).

The most pertinent reform to what I'm discussing today was the 1911 National Health Insurance act, which brought in various safeguards for those in employment who could afford to contribute to a scheme, which would then pay for them to go see a doctor if ill, and pay a small sum every week if the contributor were unemployed or unable to work. The government paid a sum to the scheme, as did the employer. The limitations of this scheme were numerous. It only covered those able to work, which at this period were mostly men, and even then the only hospitalisation it payed for was sanitorium treatment for TB. It did not cover those earning too little to be able to afford to contribute, children, the elderly, women, and those who were chronically and mentally ill. As a result, many still relied on the quack remedies that they had done before the scheme came in to force. The sad truth was that despite the advances in Medicine that had taken place, most people could not access it. The major problems with NHI showed themselves in the 1930s during the Great Depression when so many were out of work, and so many accounts in arrears (upwards of 4 million) that the companies running the schemes made no profit, which was compounded when the government reduced its contribution.

The turning point came with the Second World War. The Government were in possession of some rather terrifying figures about expected casualty rates as a result of any enemy bombing action, which thankfully never came to pass, though the Government did not know this at the start of the war. Expected Casualties (because I found this during my dissertation research and I think it's really interesting) ) As a result the Government planned various strategies to deal with the expected casualties (including a stockpile of cardboard coffins). The one relevant to this "History of the NHS", is the Emergency Hospital Scheme, which was funded and run by the Government and was "designed to serve the purpose of a moment" - to look after those injured in the war, especially bombing victims. Under this scheme any treatment needed, including hospitalisation, was free. It was during this period, in 1942, the the Beveridge Report was published which proposed a "free national health service" as a way of combating the five 'Giant Evils' of Want, Disease, Ignorance, Squalor and Idleness. The Conservatives, who nominally had the majority in the Commons at this time (though there was actually a "Government of National Unity" in power) refused to commit to putting in place the reforms, which was one of the reasons why they were beaten so comprehensively by the Labour party in the 1945 General Election. One of their first acts when they got in to power was the 1946 National Health Service Act, which provided in law for a free and comprehensive health care system.

The first day of this National Health Service was to be 5th July 1948 but there was an enormous amount of work that had to take place before it could start, including the nationalisation of Hospitals, the creation of health centres, the better/fairer distribution of doctors around the country and the creation of a new salary structure. On top of all this work, there was a huge amount of opposition (as with any large and sudden change). Most Local Authorities and Charitable Organisations who had previously run hospitals were opposed, as were doctors, who did not want to be employed by the government, or told where to work. In fact, at the beginning of 1948 90% of doctors said that they would not co-operate with the NHS. There was also opposition from many who were scared by the huge costs involved, but Aneurin Bevan who was Minister for Health at this time argued that Britain could afford it, and had to afford it. Bevan worked extremely hard to ensure the creation of the NHS, and by hook or by crook (he allowed doctors to work for the NHS and keep private patients while getting the public to sign up with doctors for the NHS - if a doctor didn't sign the form, he risked losing the patient [and the funding that came with them] to a doctor who would), made sure that over 90% of doctors had signed up by the opening day.

The benefits of the NHS were visible very quickly, especially in those groups which had not been covered until its creation. Maternal and infant mortality levels fell very quickly and life expectancy rose, especially as the new techniques and drugs (such as Penicillin) became available at no cost to people who would have died for want of them.

In 2008 we're looking at:
* An average life expectancy of 77 years, with more and more living until 100.
* An average of 5.2 out of every 1000 babies dying before the age of 1 (0.52%) [figures from 2006]
* Everyone can see a doctor, irrespective of whether they can pay

What I'm trying to say in an incredibly long winded way is that the NHS may not be perfect, but in comparison to what we have had before it is amazing, and I sometimes think we lose sight of just how brilliant it is amongst all the complaining about the things that are wrong and the compromises that sometimes have to be made.

My dad was chronically ill with Type 1 Diabetes most of his life, and we did not have to pay towards his care. His final illness and the two weeks spent in intensive care did not bankrupt us. My sister was born 15 weeks prematurely and spent her 16 hours of life receiving the best care available in 1982, and my parents were not left with a crippling bill as well as a dead daughter. When my mum hurt her back and she was in bed for 6 weeks her care (a physio, home help twice a day, doctors visits, nurse visits) did not cost us. When my mum was pregnant with me and was kept in hospital for most of those 9 months my parents did not have to check her out because they were worried about the cost, nor did they have to worry about the bill they were getting at the end. When I was ill with depression I did not have to worry about the cost of my prescriptions or my counselling. The times Phil has injured himself we have not had to worry about the bill from the Hospital for getting him checked out. Ben and I have not had to worry that while I've been off work I've been without coverage for my health (or traded electricity/food/rent for insurance coverage).

I think there's a lot to be said for that. So Happy Birthday NHS, here's to many many more.

ETA: Pretty much 1500 words. I wrote as much as that in some of my degree essays. Sorry guys!

ETA2 (2011): Since I wrote this my mum died from a rare form of Cancer. Her care was second to none and nothing was denied her on grounds of cost. We were not left with crippling bills, and not having to worry about finding money for her care made her last weeks and days easier for everyone.

lizziec: (acid)
Today the NHS turns 60, and I want to wish it a very happy birthday and wish it well for the next 60. I know there are plenty of problems with it, I am not blinkered enough to say that there could not be improvements, but I believe that it is one of the greatest achievements of this country, especially in the post-World War II period. Here's why.

In 1900 (that's only 108 years ago) in this country:
* Life expectancy was below 50 years
* 163 out of every 1000 babies born died before they reached the age of 1 (that's 16.3%)
* The majority of families could not afford to see a doctor

The government refused to interfere as the emphasis at this point in time was on a "laissez-faire" country, meaning that things should be left to take their own course. It was believed that interference by the Government would strangle the economy, so generally people were left to sink or swim as they could. During the latter years of the 19th Century, and the early years of the 20th Century many reports began to come out which drew attention to the plight of the poor, which was reinforced by something of a recruitment crisis for the army during the Boer War. Of those who volunteered 35% (over a third) were rejected as medically unfit, generally because of problems related to poverty.

This changed in 1906 when the Liberal Party was elected, with David Lloyd George as their Chancellor of the Exchequor, and what followed was a package of reforms that ultimately led to a constitutional crisis. The reforms included the setting up of Old Age Pensions, free school meals (which went quite some way to tackling malnutrition among the poor), slum clearance programmes and Labour Exchanges (see here for more information).

The most pertinent reform to what I'm discussing today was the 1911 National Health Insurance act, which brought in various safeguards for those in employment who could afford to contribute to a scheme, which would then pay for them to go see a doctor if ill, and pay a small sum every week if the contributor were unemployed or unable to work. The government paid a sum to the scheme, as did the employer. The limitations of this scheme were numerous. It only covered those able to work, which at this period were mostly men, and even then the only hospitalisation it payed for was sanitorium treatment for TB. It did not cover those earning too little to be able to afford to contribute, children, the elderly, women, and those who were chronically and mentally ill. As a result, many still relied on the quack remedies that they had done before the scheme came in to force. The sad truth was that despite the advances in Medicine that had taken place, most people could not access it. The major problems with NHI showed themselves in the 1930s during the Great Depression when so many were out of work, and so many accounts in arrears (upwards of 4 million) that the companies running the schemes made no profit, which was compounded when the government reduced its contribution.

The turning point came with the Second World War. The Government were in possession of some rather terrifying figures about expected casualty rates as a result of any enemy bombing action, which thankfully never came to pass, though the Government did not know this at the start of the war. Expected Casualties (because I found this during my dissertation research and I think it's really interesting) ) As a result the Government planned various strategies to deal with the expected casualties (including a stockpile of cardboard coffins). The one relevant to this "History of the NHS", is the Emergency Hospital Scheme, which was funded and run by the Government and was "designed to serve the purpose of a moment" - to look after those injured in the war, especially bombing victims. Under this scheme any treatment needed, including hospitalisation, was free. It was during this period, in 1942, the the Beveridge Report was published which proposed a "free national health service" as a way of combating the five 'Giant Evils' of Want, Disease, Ignorance, Squalor and Idleness. The Conservatives, who nominally had the majority in the Commons at this time (though there was actually a "Government of National Unity" in power) refused to commit to putting in place the reforms, which was one of the reasons why they were beaten so comprehensively by the Labour party in the 1945 General Election. One of their first acts when they got in to power was the 1946 National Health Service Act, which provided in law for a free and comprehensive health care system.

The first day of this National Health Service was to be 5th July 1948 but there was an enormous amount of work that had to take place before it could start, including the nationalisation of Hospitals, the creation of health centres, the better/fairer distribution of doctors around the country and the creation of a new salary structure. On top of all this work, there was a huge amount of opposition (as with any large and sudden change). Most Local Authorities and Charitable Organisations who had previously run hospitals were opposed, as were doctors, who did not want to be employed by the government, or told where to work. In fact, at the beginning of 1948 90% of doctors said that they would not co-operate with the NHS. There was also opposition from many who were scared by the huge costs involved, but Aneurin Bevan who was Minister for Health at this time argued that Britain could afford it, and had to afford it. Bevan worked extremely hard to ensure the creation of the NHS, and by hook or by crook (he allowed doctors to work for the NHS and keep private patients while getting the public to sign up with doctors for the NHS - if a doctor didn't sign the form, he risked losing the patient [and the funding that came with them] to a doctor who would), made sure that over 90% of doctors had signed up by the opening day.

The benefits of the NHS were visible very quickly, especially in those groups which had not been covered until its creation. Maternal and infant mortality levels fell very quickly and life expectancy rose, especially as the new techniques and drugs (such as Penicillin) became available at no cost to people who would have died for want of them.

In 2008 we're looking at:
* An average life expectancy of 77 years, with more and more living until 100.
* An average of 5.2 out of every 1000 babies dying before the age of 1 (0.52%) [figures from 2006]
* Everyone can see a doctor, irrespective of whether they can pay

What I'm trying to say in an incredibly long winded way is that the NHS may not be perfect, but in comparison to what we have had before it is amazing, and I sometimes think we lose sight of just how brilliant it is amongst all the complaining about the things that are wrong and the compromises that sometimes have to be made.

My dad was chronically ill with Type 1 Diabetes most of his life, and we did not have to pay towards his care. His final illness and the two weeks spent in intensive care did not bankrupt us. My sister was born 15 weeks prematurely and spent her 16 hours of life receiving the best care available in 1982, and my parents were not left with a crippling bill as well as a dead daughter. When my mum hurt her back and she was in bed for 6 weeks her care (a physio, home help twice a day, doctors visits, nurse visits) did not cost us. When my mum was pregnant with me and was kept in hospital for most of those 9 months my parents did not have to check her out because they were worried about the cost, nor did they have to worry about the bill they were getting at the end. When I was ill with depression I did not have to worry about the cost of my prescriptions or my counselling. The times Phil has injured himself we have not had to worry about the bill from the Hospital for getting him checked out. Ben and I have not had to worry that while I've been off work I've been without coverage for my health (or traded electricity/food/rent for insurance coverage).

I think there's a lot to be said for that. So Happy Birthday NHS, here's to many many more.

ETA: Pretty much 1500 words. I wrote as much as that in some of my degree essays. Sorry guys!

ETA2 (2011): Since I wrote this my mum died from a rare form of Cancer. Her care was second to none and nothing was denied her on grounds of cost. We were not left with crippling bills, and not having to worry about finding money for her care made her last weeks and days easier for everyone.
lizziec: (carebare hug)
Benjamin Daniel Slowe, born 13:36 today, weighing 9lb 13oz. Rah and sprog both fine (but obviously tired).
lizziec: (carebare hug)
Benjamin Daniel Slowe, born 13:36 today, weighing 9lb 13oz. Rah and sprog both fine (but obviously tired).
lizziec: (carebear star)
[livejournal.com profile] rahslowe went in to labour late last night and is currently in Hospital. Please do not text or call them at the moment, as they are understandably busy with other things ;) Will update again with more news when I get it (which will probably not be until Sproglet has been born).
lizziec: (carebear star)
[livejournal.com profile] rahslowe went in to labour late last night and is currently in Hospital. Please do not text or call them at the moment, as they are understandably busy with other things ;) Will update again with more news when I get it (which will probably not be until Sproglet has been born).
lizziec: (casualty - Charlie)
Today I fell down half a flight of stairs from our flat. I mis-stepped on the top step and fell until the halfway break and its railings stopped my fall. It hurt.

Anyone thinking of falling down stairs (especially concrete ones with sharp edges) take my advice. Don't.

I was checked out at the hospital, and didn't break anything luckily (and rather miraculously). I have scraped most of the skin off my left shin though, and have grazes on my left shin, right thigh, left forearm and right upper arm, and an enormous bump on my forehead. And I'm black and blue in a way that ben's pictures (see below for link) don't show (mostly because they've been coming up since he took the pictures at the minor injuries unit at the K&C).

Pictures here.

It really hurt when the nurse cleaned the grazes up, because underneith is all bruised and there was grit and stuff in wounds that had mostly scabbed over. Apparently all colour drained from my face.

Anyway, now you all know how stupid I can be.

On the upside neither my glasses nor my phone were destroyed, despite falling twice as far as me. In fact, the phone didn't even disconnect the call I had going at the time. Talk about impressive (and lucky). Yay!

Again, I reiterate, if you're thinking of falling down stairs, don't ;)

lizziec: (casualty - Charlie)
Today I fell down half a flight of stairs from our flat. I mis-stepped on the top step and fell until the halfway break and its railings stopped my fall. It hurt.

Anyone thinking of falling down stairs (especially concrete ones with sharp edges) take my advice. Don't.

I was checked out at the hospital, and didn't break anything luckily (and rather miraculously). I have scraped most of the skin off my left shin though, and have grazes on my left shin, right thigh, left forearm and right upper arm, and an enormous bump on my forehead. And I'm black and blue in a way that ben's pictures (see below for link) don't show (mostly because they've been coming up since he took the pictures at the minor injuries unit at the K&C).

Pictures here.

It really hurt when the nurse cleaned the grazes up, because underneith is all bruised and there was grit and stuff in wounds that had mostly scabbed over. Apparently all colour drained from my face.

Anyway, now you all know how stupid I can be.

On the upside neither my glasses nor my phone were destroyed, despite falling twice as far as me. In fact, the phone didn't even disconnect the call I had going at the time. Talk about impressive (and lucky). Yay!

Again, I reiterate, if you're thinking of falling down stairs, don't ;)
lizziec: (potterpuffs - Tonks)
(or, I hope that medical professionals have more boring lives than their fictional counterparts)

I came home yesterday after my appointment with my doctor and counsellor and watched an episode of Holby City because I had nothing better to do. As I watched I found myself hoping beyond hope that real doctors have very dull lives, for the sake of my health and that of those around me. The reason for this was the storyline:

Doctor A has a gambling problem and has to borrow money from Doctor B (who has a crush on Dr D). At this point Doctor A's son (who is in medical school) comes in with Pneumonia brought on by his Heroin use requiring an operation (or his heart will go septic or something), and is about to be operated on by Doctor C, who has recently had brain surgery to control his parkinsons, but just as the patient is going south the parkinsons reasserts itself and Doctor C has to bow out, to be replaced by Doctor D, who is an alcoholic and thinking only of his romantic problems with his therapist, Doctor E, who is about to go to new york. The Anesthetist, Doctor F has just come off suspension having been falsely accused of rape by a patient. Eventually, despite all these problems, the patient survives to use heroin another day, while Dr A continues to gamble his life away, Dr B continues to mope after Dr D, who has run off to New York with Dr E and Dr C finds out his father has just died.

The "B" plot is just as ridiculous (Dr G is having an affair with his mother in law [a secretary at the hospital], shortly after his wife [a sister on another ward] has delivered their stillborn baby...).

All this led me to hope that my drs and other medical professionals with anything to do with me live in dull houses in suburbia, doing nothing in the evenings at all. Luckily I have a sense of perspective - I know that people don't really have lives like that...

Do they?

Typing speed meme )

What my name means )

lizziec: (potterpuffs - Tonks)
(or, I hope that medical professionals have more boring lives than their fictional counterparts)

I came home yesterday after my appointment with my doctor and counsellor and watched an episode of Holby City because I had nothing better to do. As I watched I found myself hoping beyond hope that real doctors have very dull lives, for the sake of my health and that of those around me. The reason for this was the storyline:

Doctor A has a gambling problem and has to borrow money from Doctor B (who has a crush on Dr D). At this point Doctor A's son (who is in medical school) comes in with Pneumonia brought on by his Heroin use requiring an operation (or his heart will go septic or something), and is about to be operated on by Doctor C, who has recently had brain surgery to control his parkinsons, but just as the patient is going south the parkinsons reasserts itself and Doctor C has to bow out, to be replaced by Doctor D, who is an alcoholic and thinking only of his romantic problems with his therapist, Doctor E, who is about to go to new york. The Anesthetist, Doctor F has just come off suspension having been falsely accused of rape by a patient. Eventually, despite all these problems, the patient survives to use heroin another day, while Dr A continues to gamble his life away, Dr B continues to mope after Dr D, who has run off to New York with Dr E and Dr C finds out his father has just died.

The "B" plot is just as ridiculous (Dr G is having an affair with his mother in law [a secretary at the hospital], shortly after his wife [a sister on another ward] has delivered their stillborn baby...).

All this led me to hope that my drs and other medical professionals with anything to do with me live in dull houses in suburbia, doing nothing in the evenings at all. Luckily I have a sense of perspective - I know that people don't really have lives like that...

Do they?

Typing speed meme )

What my name means )

March 2012

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