filtered (not mum): Mum's still with us
Wednesday, May 5th, 2010 11:32 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lizziecWell 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
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
Tags:
- 44l,
- 6mc,
- bad day,
- cancer,
- canterbury,
- coulsdon,
- depression,
- doctors,
- family,
- friends,
- hospital,
- macmillan,
- mum,
- people who rock,
- relatives
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no subject
Date: Wed, May. 5th, 2010 11:25 pm (UTC)I am so sorry to hear that the tumour symptoms are worsening even though other things are improving/stabilising, it's such a house of cards I can't imagine trying to maintain the balance.
I guess it's not a surprise your mum's mood changes, it must be so hard not to take some of that personally, you're all in such a horrible and distressing place. You've got that difficult balance of spending as much time at the hospital vs possible and likely getting on each others' nerves because you probably wouldn't normally end up spending time together in this way and hey additional difficult circumstances TM apply.
I'm not surprised you're running out of MH spoons, you must be burning physical and mental spoons at a phenomenal rate with travelling, hanging around a hospital for 8 hours a day, making and thinking about horrible decisions, grief, your mum's needs, Phil's, yours etc etc... And you're very much a person I perceive as putting other people before yourself.
Not sure what solutions I can think of, I wanna fix it all for you, I know everyone does which must be a drain in itself. Is there anything practical people you know and love could do? Would a house-cleaning/washing/other fairy be something you could ask Mormons for - or are there others you'd trust? Or is that too much like 'people inna house'? I'm wondering about MIND as someone to call for advice on the depression and anxiety, non medical solutions. Samaritans also, they're there to listen and might be a good safe option for you - and they will really not mind your call and be a neutral party.
I hope in amongst all of this you are getting some down time, things for you, that you need or want to do. Same for Phil too! The double bind of wanting more time, but the time costing you what you struggle to maintain - I hope it's some help to know you're not alone, another LJ friend in a similar situation with her mum (who has end stage lung cancer) has the same worries and thoughts.
There's no obligation or expectation to reply to this (or anything else), do what the spoons allow and I shall keep wishing you all the love and strength in the world!
no subject
Date: Thu, May. 6th, 2010 06:47 am (UTC)It's a very stressful situation and you're bound to be having problems: look after yourself, and accept any offers of help because people wouldn't offer if they didn't mean it.
Thinking of you.
no subject
Date: Thu, May. 6th, 2010 07:54 am (UTC)no subject
Date: Thu, May. 6th, 2010 10:48 am (UTC)