Scattered thoughts

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

I'm up at mum's now. I brought stuff for several days just in case, and some new pj's for mum, cos she was getting sick of the ones she already had.

More news on what's going on.

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

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

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

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

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

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

ETA: 12/07/11 No longer filtered

So for those following, the doctors have the results of the scan and it's not too good. They've found a growth behind her nose, and they think it's malignant because of the speed symptoms have appeared and got worse in (about 8 weeks). She will know more tomorrow after she's seen a Neurologist. She said it's not secret, and has told all the people who need to be told in person (though this is locked so she doesn't know I've made this update).

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

ETA: 12/07/11 No longer filtered.