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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
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
