Scattered thoughts

What follows is something of a random whinge, so please just treat it as that and nothing more. Hey look, I post for the first time in months and then do two posts in an evening. Fluke? Too much stuff in my head? I dunno really. We'll see what this develops in to.

It's been just over a year since no1typo got ill, and very nearly a year since she died and I still feel like I'm picking up the pieces of my life. There are times when I almost feel caught up, like I'm back in the groove again, but they're pretty rare. Most of the time I still feel like I'm playing some sort of catch up game.

I understood this 10ish months ago. I'd taken two or three months out of my life before she died to help look after her and be with her as she got worse. After that there was all the busy-ness random admin and worrying that came with her being dead. But it's nearly been a year. I don't get why it is I still feel like this. Surely I should have picked up all the threads of my life by now? I keep wondering if it can possibly be normal. Well, for values of normal anyway.

Gaaaaah.

This entry was originally posted at http://lizziec.dreamwidth.org/416333.html. There are currently comments on the original entry.

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

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

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.

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.

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

We went to St Georges ENT clinic again today, in the absence of any news in the meantime, and the news we got from Mr Williamson today is not good. Looking at it objectively, I suppose it's not the worst news we could have had - mum won't die tomorrow - but it pretty much extinguishes all hope, and from that point of view it doesn't get much worse.

The pathologists at St Georges were unable to make a diagnosis of mum's tumour from the samples taken at biopsy and so they've sent it to a Professor Fisher at the Royal Marsden (think he's the guy at the bottom here, which makes him sound like he's pretty much a world expert) who is pretty much the last chance for identifying the tumour, and it's a pretty slim chance. It's likely that we will never find out what the tumour is.

If they can't identify the tumour then they won't be able to offer Chemotherapy, as different tumours react in different ways to different drugs, and as I mentioned before, surgery is out because the tumour is wrapped around mum's Carotid artery. Mr Williamson pretty much said today that there is a very good chance that the cancer/tumour is terminal, and that the most that they will be able to do for mum is palliative radiotherapy.

Failing any news before next Thursday we'll be seeing him again for a confirmation that there's not much they can do. After that (or before, depending on when they know for sure) they'll refer mum to the Royal Marsden at Sutton for the radiotherapy.

In the meantime, mum's been given five days worth of steroids in the hope that they can quell some of the worst symptoms by reducing the swelling and inflammation that's being caused by the tumour. The downside to this is that the steriods will mess with mum's diabetes management and in the worst case scenareo she will end up in hospital for constant monitoring and possibly be on an insulin drip. The steriods are at a low dose to try and ward off problems, but that means there's less chance of them having an effect. The Macmillan nurse (Fiona) at St Georges is contacting the diabetic nurse at mum's GP to arrange for close-ish monitoring, though I don't know how we'll manage over the weekend. Hopefully some more answers on that tomorrow.

I don't know yet if I'm going home this weekend. I don't want to be in Canterbury if mum does end up in hospital because of the steriod/diabetes mix. Mostly right now I'm trying to deal with the fact that the diagnosis is almost certainly terminal. I feel like I did back at the cancer diagnosis. I'm swinging wildly between numb-Lizzie, planning-Lizzie and sobbing-her-heart-out-Lizzie. Ben's taken tomorrow off work and will be arriving tonight, which will be good as I feel like I need someone not so emotionally involved to lean on. Phil just came home and we hugged like we haven't hugged in ages.

Feel awful.

ETA: 12/07/11 No longer filtered

No news :/ They'll call again on Monday. Bugger. I was hoping we'd have a definitive yea or nay and I could stay in Canterbury until Wednesday if they determined it not uber urgent :/

Heading back to Canterbury for the weekend soon. It'll be nice to be back :) Looking forward to seeing benc.

ETA: 12/07/11 No longer filtered

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 benc over the phone and a lesser list to 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

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

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, 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 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

Yesterday was a much better day for a couple of reasons. First, I got out for a bit a couple of times (getting some ginger tea and some peppermint tea, and some water biscuits to help mum with her nausea and vomiting; going to Coulsdon for a little bit of a wander with mum later), and secondly I achieved some stuff. I have a feeling that those things are quite important in making me feel useful and thus better about being here.

Mum had pretty bad nausea and vomiting on Monday and during Monday night, but started to feel better on Tuesday morning, though still very tired. She cancelled some visitors who were supposed to be coming in the morning and rested and managed to eat something, and by Lunchtime felt up to attempting to go out, so we took it in several steps, which seemed to help her. Pension first, then Coulsdon itself. First to Coulsdon Hardware to get a new mop and bucket (having broken mum's mop during the great room tidy project - it was very funny, Phil looked all forlorn and said looking very sad "I could have sworn [the squeegee mechanism] would have worked before I actually broke it...), then as she was still doing ok we went on to the butchers for some sausages for tomorrow night, then as she was still doing ok we went on to the Coffee place that has sprung up in Coulsdon since I moved away/the bypass was built. A cold drink from there and some carrot cake seemed to do wonders for perking mum up, as, I'm pretty sure, did just getting out. The whole trip wiped her out, but she said she felt better for it.

While she had a sleep I went to work playing with the mop trialling the mop, before losing interest mopping the floors in the kitchen and the bathroom, and hoovering all the other floors while I was at it and had the vacuum cleaner out. I'm pretty sure that the kitchen floor is better for it. I hope so anyway, because it was hard work.

My adventures in cleaning did reveal to me some interesting personality traits in my mum's cats though. George, who is enormous and I think likes to think of himself as a bit of a hard man, is a big scaredy cat who is terrified of the vacuum cleaner. When I went near his chosen sitting place with it on he jumped up and ran away. On the other hand, Violet, who is his sister and very petite, wasn't scared of the vacuum or the mop, or the fact the kitchen floor was wet, and stayed put in the kitchen on her chosen worktop the whole time I was working in there. But curiously I found out while was taking a break that Violet is scared of 80's Power Ballads. While I was taking a break and listening to a rather eclectic mix of music, Violet was curled up next to me asleep. Every time an 80's Power Ballad came on, she'd jump up and look a bit freaked out and need some fussing before she'd relax again. It was very cute. And funny. And I'm clearly mean ;)

The rest of the afternoon and evening was spent in my little room again, catching up on various internet things, including the CBB, where I asked for prayers and thoughts to do with this situation and everyone has been overwhelmingly amazing. I can't express how touched I am with the responses, especially towards someone who is largely a lurker now and most people don't know well, but will have a go later at expressing it anyway, because they deserve to know how awesome they are.

Anyway, while I was geeking around with my laptop I became aware of being very cold. I assumed I was just being a big girly wuss, especially as this room is colder than the others because of an air vent in the wall. About half 7 I finally got around to checking on the radiator and it was stone cold at a time when I knew it should be on, and discovered that the gas had run out (I'd forgotten how much of a pain these type of meters could be). Ended up taking the gas card and the electric key down to the place in the valley that tops them up and decided while I was out I'd get a pizza for dinner because I really couldn't be bothered to cook by this time. All this meant I was back a bit later than I otherwise would have been and I walked into a gaggle (if two plus a toddler is a gaggle) of Mormons, so my pizza went cold while we all talked. As most of you know, I'm no longer a Mormon, and my time with them was often rather, um, fraught, but one of the people (Good Guy) who was there is the only one who consistently stood by my family through everything and who still talks to, and is on good terms with us. Which is the reason I didn't shoo him out of the door faster.

Mum resigned from the church finally last year sometime over the Church's interference with California's Proposition 8 last year, and has foregone contact with them (except for Good Guy) for long before that, so it was a bit of a surprise to see this man with his Home Teaching companion. They'd come to offer mum a Priesthood Blessing as apparently when Good Guy saw her on Sunday to see if there was anything he could do, he offered one and mum said she'd think about it.

Anyway, she decided that actually she didn't want one and proceeded to doze through the rest of the visit - good for her - while I chatted because after about 6 years out, and 6 years inactive before, and what they did to me and my family (lots of hurt/bitterness still) that I still don't feel like I can be rude to them. Gah. Still, the visit did result in Good Guy saying he'd do some basic garden maintenance for us, which is good because Phil and I are too busy (and I'm too inept when it comes to garden stuff) and mum too ill to be able to do it ourselves. I also chatted to the Home Teaching Companion about UKC, where he was a student at KLS until 2007, which was quite nice. Alas, I fear I have given away too much of my location to him in my desire to express how much I loved Canterbury. Hope we don't end up with a visit from the missionaries...

When I finally got to my pizza it was lukewarm, fading to cold before the end :( I've no idea how they manage it, but Mormons seem very good at turning up when dinner is nearly or actually ready and then talking until it's cold :(

Currently waiting for the Tesco delivery to arrive and feeling the early and cold today. I'd then go back to sleep and be a big lazy thing, but it's mum's payday and if she feels up to it has a number of things she wants to do.


Much later - Tesco turned up, food is all put away. Think I may have ordered too much. Fridge and Freezer cannae take much more captain! Also managed to have a shower, in preparation for venturing to Croydon later if mum feels up to it.

ETA: 12/07/11 No longer filtered

I mentioned here that Phil and I spent hours cleaning out the spare room at mum's place so that I could have my own space here. The bed arrived on Saturday and is now all together and covered with bed clothes. I brought some things back from Canterbury this morning to make it more my own space, so I thought I would post the pictures of how it looks now (please excuse the quality, I used my phone camera).

I'm still trying to think of ways to improve the walls. Maybe I need some postcards or something to stick up?

( Pictures of my little corner of mum's house. Cut to save your friends page :) )

In other news, still waiting to hear when the MRI will be. I also called mum's council this morning and they're sending forms to register for postal voting, then I called my council who are sending me forms for both a postal and a proxy vote so I can pick which one I want to use. Then I'm hopefully covered should I be here on election day.

ETA: 12/07/11 No longer filtered

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 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

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

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.

Every so often there is someone who touches your life just though their writing. You don't know them but their bravery and determination communicated to your through their writing touches and moves you in ways that you could not even imagine and has a huge impact on your life and way of thinking.

One such person for me was Ivan Noble.

Ivan was a write for the BBC website when he was diagnosed with a brain tumour in 2002. He kept a remarkable tumor diary and did his best to de-mystify and educate people about cancer. I have read it from the beginning and would urge anyone who reads this entry to do the same, because it shows what a remarkable man he was. He is a person I very much respected.

His diary was updated for the last time last week (I wrote about it here) and on Monday he died.

Considering I never knew and will never know him I am bizarrely upset. I wanted him to win his fight. I wanted him to be there to see his children grow up, I wanted them to know him properly, I wanted his wife never to know the sorrow of widowhood and being left with two young children. Now I'm crying and I can't even explain why properly.

He was an amazing man and I hope that if I should ever be diagnosed with a such an illness (and I really hope I never am) that I can face it with even half of the bravery he showed.

My thoughts are with his family and friends at this time.

For those of you who have been reading, or have ever read Ivan Noble's Tumor Diary

:(

For those of you who have been reading, or have ever read Ivan Noble's Tumor Diary

:(