Scattered thoughts

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

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

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

I suppose, really, that I should have taken photos of each stage of this, because it was a mammoth undertaking. I didn't though, so you'll all have to put up with boring old text :)

When we first moved in to our flat, Ben's parents very kindly gave us an old sofa of theirs. It was leather and a little worn, but basically sound, very comfy and, most importantly as we had no money after buying essentials like a fridge freezer, was free.

Cut to four and a half years later, and the sofa was rather a lot worse for wear. The leather had cracked in the seats, and so was held together from the inside with duct tape. One of the struts had gone, so it was saggy and the lining under the cushions had split open so stuff kept falling right down. Basically it was on borrowed time before it completely disintegrated and we knew it.

With that in mind, we went Sofa shopping, and after much deliberation, we found one we liked at Harveys (the three seater "Clarissa") and having measured our hall, our old sofa and the new one, we were certain we could fit it in. The dimensions were all within a couple of centimetres. So we ordered it, we paid for it and we waited 4-6 weeks for it to be delivered.

And right now I'm so unbelievably pissed off because I finished writing this, only to lose it because LJ logged me out and I'm an idiot who didn't copy paste it before logging back in so LJ *helpfully* restored the last saved draft which involved losing over three quarters of what I had already written. So the rest of this is a rewrite of what I've already done once and my heart isn't really in it.

So four to six weeks later we moved everything in the flat around so that we could fit the new sofa in. This was no mean feat, because our flat has been full to bursting for the last two years or so and we've just been coming up with ever more inventive ways to fit things in. This particular moving of stuff involved taking everything out of the hall - two bookcases full of books, computers and assorted internet paraphernalia, coats and shoes, printer, ironing board and clothes horse, fan... No, our hall is not some sort of Tardis, just very packed ;) It also involved moving two bookcases full of books and another two cd racks from the living room so that the doorway was clear. For the record, 3 of the bookcases ended up in the bedroom where they now form a sort of library ;) The CD towers are still there as well. The layout made enough sense that we decided not to move the stuff back.

Anyway, after lots of hard work to clear a path, we then had to get the old sofa out (which we did and put it safely in the garage for a couple of days) so we could get the new one in. I arranged for it to be picked up by the Council, who did so on the morning of our next rubbish collection, which was handily on the morning the new sofa was being delivered. I think that by the title, and this statement, most of you can guess that what happened next was not straightforward. Really I should have known better than to arrange for our old sofa to go before we had the new one safe and sound in our living room. Alas. I am an idiot who bites her thumb at the fates ;)

The sofa delivery men arrived about an hour or so after the council men had come to get the old sofa. They came up to see what obstacles were in their way and the first and clearly senior man declared that the new sofa would not fit. We had measured everything and were convinced he was wrong, so he brought up the sofa to prove it. And he was right. We had the sofa men try getting it in several ways. We tried getting it in several ways. There was no getting around the fact that this shiny new sofa just would not fit. The problem lay in two places. First, we have a funny corner you have to get around to get into the living room, and this prevented us lying it down horizontally and sliding it through the door that way, and it was too high to get in vertically. Secondly, although this sofa was more or less the same size as the old one the edges are all hard, whereas they were squishy on the old one, so they squished to get round awkward things. There was literally no more than 2cm between us and the sofa getting through the door into the space where it would certainly fit.

The delivery men suggested two possible solutions. Option A involved them leaving the sofa with us and (they suggested) swapping our bedroom with our living room. Ben and I quickly realised that that plan was a no-go for a number of reasons. Option B was that they took the sofa with them back to Harveys. Option B was at this point looking the most palatable, so Ben called Harveys to see what they could offer us if we chose to do that. I say he called - he had to, because I was having a freak out (hysterical tears) by this point, convinced that it was all my fault because I'd taken the initial measurements, and that I could never have nice things and I never would again because I'd messed the sofa business up so badly. I think that this is probably an example of what my old Mental Health Nurse would have called "Catastrophic Thinking".

Anyway, Ben called Harveys and they told us they could give us 50% of what we paid for the sofa if we returned it because making it fit was our responsibility and if it didn't they weren't actually obliged to give us anything. They said that they would then take a £50 charge out of the store credit to cover the cost of bringing the sofa back from our flat, where it was currently vertical on one end in the hall, and then when we picked a new sofa they'd take another £50 for delivering a new one. Basically, when all was said and done, we were looking at getting nothing back and essentially losing all the money that we had paid for the perfectly good sofa in our hall.

After this call, we decided to pick Option C, which was to keep the thing and figure out something. And Ben had the beginnings of a Very Cunning Plan.

The shiny Sofa sat in our hall for the best part of a week while Ben gathered his plans and tools. This involved borrowing a Jigsaw (the power tool, not the puzzle) from dmc, buying lots of supplies from toolstation, and an electric screwdriver from B&Q. Finally, his plan was ready to be put in to action, and to be honest, it scared me rather a lot, but I'd been sitting on a beanbag whenever I was in the living room for the best part of week by this time and ready for drastic action that could have ended with severed fingers.

It turns out that the new sofa basically has a box made of MDF or chipboard or something at each end where the arms are, which aren't structural. So Ben picked the staples out of the fabric at the bottom of the sofa at one end, which was pretty difficult because the staples are cheap and kept breaking, then peeled the fabric back ([Edit] Ben says this staple remover deserves an honourable mention in this story. Possibly because he couldn't have managed the staples without it. Anyway, if you need a staple remover, that one is awesome, apparently).

Next he used the jigsaw to cut the box about half way down (this was higher than Ben is tall, and where the plan could have ended with severed fingers as he was jigsawing above his head, and possibly the scariest thing I have ever witnessed), we slid it into the living room as it now fitted under the door easily being about half a foot shorter than it had been previously and then Ben put the end back together with mending plates. It took forever. There is literally barely a millimetre of the join that is not covered by one mending plate or another. After this was done, he pulled the fabric back over the end and stapled it down again. Apart from the alarming creaking noise it made the first time it was sat on, it's not moved or made a noise since, and we've now been using it for 4 months or so. Ben thinks it may be stronger now with all the mending plates than it was before.

Regardless, it's now in, and not being moved again until we move. What we'll do then, I don't know. Possibly the procedure in reverse, or maybe leaving it for the removal company to try and get it out while scratching our heads and sounding bewildered that it doesn't fit given it went in.

I tell this story largely as a cautionary tale to anyone even considering new furniture. Measure, measure, measure. And that there is usually a Plan C, even were one doesn't appear to be readily available.


The sofa in situ

When I lost this entry, I got a case of the fuckits and considered giving up. I went and washed up instead and I'm glad I re-wrote it. I got into the swing again, and I think it was worth it.

I am a muppet and as a result of this I am fed up today.

Last week, about Wednesday, my left knee which has been misbehaving for a while swelled up. The Dr gave me some anti inflammitories and I wnet into work on Thursday and it was worse, so I stayed home on Friday and did practically nothing all weekend except sit on the sofa (though there was a great excursion to Espression on Saturday with Rah and Claire to celebrate Claire's birthday). Because of this I got rather restless and when my knee had stayed normal size on Sunday I decided, late in the evening to take something out to the car.

At 10pm.

My right foot landed awkwardly on a pothole/dropped concrete hole. Over my ankle went. I may have screamed a bit (it hurt) and some people came from across the road to see what was wrong. They restored my faith in humanity - the lady was in her nightclothes! Got Andy to give me a lift to K&C because it hurt so much and was swelling up beautifully. According to the nice nurse at the K&C it's a bad sprain and she would have bandaged it except it was not policy to do that anymore. She sounded pissed off. I would guess the "policy" is due to budget restrictions - luckily I had some tubigrip at home and it's now strapped in one of those. Sue came out and gave us a lift home.

I can bear weight, but movement in any direction hurts and I didn't so much sleep last night as doze being woken up lots by me moving my ankle in my sleep.

Congratulations if you read all that: The important hilights are that foo^rah, andy^sue, Claire^Ben and my ben (and others!) all rock and I am in ouchy pain at the moment and it's my fault and ben told me so.

I'm fed up and off work again. Daytime TV is causing me to lose the will to live. Hopefully back to work tomorrow if only to save my sanity.

Finally - Happy birthday claire_tanner!

nert rocks muchly.

That is all.

nert rocks muchly.

That is all.

no1typo rocks. And not just cos she is my mummy :)

*dances*