I had a good night’s sleep.

The IBS tablets have started to work - I’ve got to halfway through the evening, and I can still stand up straight!

We booked our holiday this morning - Taba Heights (Egypt again) here we come!

And, without a doubt, most importantly - I had *The Home Chat* with Mum…

It came up quite naturally in conversation - and we’ve had more meaningful conversations today than I can remember us ever having. We’ve both been able to be honest, and it’s been pretty emotional, but in a good way. I feel as if a huge weight has been lifted from my shoulders, as I’ve been dreading talking to her about it. I’m not naive enough to think that it’ll all be hunky dorey from now on, there’ll be many, many more ups and downs, but it does feel like a huge step forward.

This afternoon I hugged my Mum, and it felt good. I hope this is the start of a better things for us.

So far, we have migraines, a seized up neck, acid indigestion/heartburn, anxiety and depression - all stress related.

Now I can add the return of an age old enemy, one who I thought I’d got shot of some years ago.

My IBS is back. With a vengeance. I am bloated, my gut is in constant spasm, and I’ve never had pain like it - it gets worse as the day goes on, and by evening I’m doubled up with it. And Doc has told me it could take up to a week for the (yet more) tablets he’s given me, as it’s so severe.

One lousy weekend coming up…

Mum collected from hospital - check

All tablets present & correct - check

Social Services resumed - check (in fact double check, as I rang the agency Mum’s contracted out to just to make absolutely sure before I went to the hospital)

District Nurse - District Nurse? It’s 6.30, and no District Nurse - ring the DN office (for which I luckily have the number, and, even more luckily, is still staffed by the evening team) - as far as they’re concerned, they aren’t due to see Mum until her clotting levels check on Friday morning…I recap, and they say they’ll send someone round asap to do Mum’s heparin injection. They also promise to shout at the hospital.

I, in the meantime, phone to shout at the hospital - who inform me that the DN office rang several times today to check what they were meant to be doing, and had ALL the info faxed over to them, and that they - the ward - will be shouting at the DN’s office.

I really don’t care who shouts at who. I just care that yet AGAIN there’s been a cock up, and it’s only because I’m around that Mum hasn’t fallen through the net AGAIN, and I’m sick and fucking tired of being the one who does shout and sorts out all the crap. I simply can’t take much more.

Another quickie, as it’s been a long day, with another one ahead tomorrow, and I’m falling asleep…

Mum’s fine & is being discharged tomorrow - with full social services support reinstated and the support of a district nurse to give Mum heparin injections while her clotting levels return to normal.

I must say, after the first 24 hours which was a tad cock-up ridden, this hospital have been much better, both with treating Mum, and keeping me in the loop. I didn’t get to meet Mr Consultant today after all, but might do tomorrow when I go to collect her (one extra long lunch hour coming up).

Right - you’re all up to date -

ZZZZZZZzzzzzzzzzzzzzzzz

Well, she’s had the throat op, had the steroid injections in her knees, come back from theatre and is 100% fine. Hurrah!

I shall get to meet the consultant surgeon tomorrow - he did ring me himself today to let me know everything had gone well, but unfortunately rang the home number (and got Chris) - so that’s the third time I’ve failed to speak to him! He’ll give me a proper progress report, but it does all seem to have gone according to plan. Apparently this here pharyngeal pouch is quite rare - he told Mum he only operates on about 10 a year - I thought it was a much more common thing. Trust Mum to be different!

Anyway, she insisted on treating me and Chris to a meal on her after we’d visited, so we took ourselves off to the Harvester, and very nice it was too. Here’s a tip though : if you choose something like ribs or wings straight after a hospital visit, remember you’ve used the alcohol gel from the ward to clean your hands - preferably BEFORE you lick your fingers…yeuch!!!

Just a quickie blog tonight - all looks set for Mum’s surgery tomorrow, so could I request some positive vibes in this direction please? Her spirits are up, but she is understandably nervous, and looking forward to have the whole thing over and done with.

Thanks

The hospital tried to discharge Mum this morning, saying her bloods were OK, and she could go home until Sunday, when she’d need to go back in for a heparin injection before Monday’s op.

This is so wrong on so many levels :

1) They are aware she has social services three times a day, 7 days a week. They are aware this has been suspended for the duration of her hospital stay. They should be aware that these things cannot just be started up again at zero notice; indeed they are meant to give social services 48 hours notice of discharge

2) They took the blood yesterday, within 24 hours of her last warfarin dose. You would therefore expect the bloods to be OK. Surely it should be today & tomorrow that they should be testing her? Her previous history shows her bloods have a tendancy to go bonkers once off warfarin; she was on heparin almost immediately when in Hospital A earlier this year, and even complaint ridden Hospital B tested her blood daily - and she was still on warfarin then!!!

3) Mum doesn’t do sudden unplanned changes. I have spent a month building her up for this, and knew damn well she would be seriously flustered by the upheaval of packing all her stuff up again, only to have to repeat the process in under 48 hours. (I was right by the way - when I rang her after this exchange with the ward, and having out my foot down firmly, citing social services as the reason for their needing to keep her in, she was mega flustered, and heartily relieved to hear she’d be staying there after all.)

4) Having spent a considerable amount of time in the last few days advising all the relevant people & organisations she was being admitted, I would then have to ring the vast majority of them to say she was out, and then again to say she was back in - insanity!!

So what the flock are they playing at? Trying to empty beds for the weekend? Cynical? Can you blame me?

FFS!!!

So. Got Mum into hospital OK. She has a nice spacious side room and her own bathroom, so she’s happy.

Would you be surprised to know things have already started to go wrong?

I have just rung Mum on her Hospicom phone and learnt the following :

1) She still hasn’t been given a jug of water and a glass. She’s using her coffee cup from earlier, and water from the bathroom. This is six and a half hours after I left her there (and I’d been with her going through her admission for a further one and a half hours before that).

2) She’s been left to sort out her own tablets from the supplies I’d been asked to take in. Not from her daily medidose pack, because you’re told to take the tablets in in their original packaging. Mum hasn’t sorted out her own tablets for nearly a year now. Some have changed since she last did, and she’s not too familiar with some of the brands.

So. I rang the ward. They’re out of jugs, and have been on at the hospital kitchens about it all afternoon. They have approximately 20 patients without water jugs. Bear in mind most of these won’t have their own bathroom and therefore easily available supply. And the tablets? At this point - not earlier during the admission process - they ask me if she self medicates at home, to which I reply no, and they promise to go and sort her out. Had I realised that this was even a possibility, I would have advised them straight off that she needs her tablets sorted and given to her, but seeing as that’s what NORMALLY happens, I hadn’t given it a thought.

Less than 12 hours in, and already the catalogue of cock ups seems to have begun. Are my expectations really so high? Am I really asking too much? Am I overeacting?

No. Didn’t think so.

A friend of mine in the States who works with special education young adults (aged 12-21 years) is working on a project to improve their geography - they’re trying to get postcards from as many places around the world as they can, and are marking their progress on a big map.

If you’d like to help, please send postcards direct to the school :

North Country Learning Centre Room #26
Eastern Suffolk BOCES
100 Suffolk Avenue,
Stonybrook. New York 11790
USA

Thank you!!

So it’s not just my neck that’s all tensed up.

Thank goodness that’s over for another three years.

*apologies to those for whom this is too much information*

Many a morning I’ve woken up with a migraine.

I’ve never woken up hardly being able to move my neck. Tablets and some extra zonk time eased the headache, but the neck wasn’t going anywhere. Except the docs.

And it transpires that my neck is pretty much a solid lump of tension, and the muscle is going into spasm. I’m now on a 2 week course of anti-inflammatories, and am sitting here with a microwaved wheatgerm pillow (which niffs a bit) round it.

And after work, I was back at the docs, with Mum. OK, so it was a scheduled appointment, but I’m still feeling like I ought to have my own chair in the waiting room. I’m there AGAIN tomorrow for that three yearly test all we women HATE.

Deep joy. Deap Heat…?

Only 1 migraine tablet this weekend (so far - don’t want to tempt fate!). So it looks like this cluster could be coming to an end. Hurrah! (and about bloody time too!!)

Been quite a nice weekend actually, even managed to make church for the first time in about three months this morning, and everybody, including new lady vicar, was really pleased to see me

Had a busy morning, so enjoyed a nice lazy afternoon to compensate. Just getting going again now. Why does Monday morning loom so quickly?

But at least today’s didn’t hit until I was leaving work, which is a marked improvement on waking up with one, or it arriving during the morning. And the wonder drug did its thing again. But this is some run, I may have set a new personal best…

Trip with Mum to the doctor’s went OK this morning - she seems to be alternating good days and bad days, but the bad days are only one bad go, nothing like earlier this year. So fingers crossed, it is a combination of a bug and Mum getting anxious about next week and the fact she’s got diarrhoea again. The next 48 hours will tell.

Mum pretty bad again this morning, have managed to get her an appointment with her GP first thing tomorrow.

16 days and counting…

Max - too right!

Hutters - we have joint money and our own money, so technically we’re responsible for our own cars & running costs, so this help is very much appreciated!

Lois - no we weren’t!!!

Well yes, I did have to take a tablet late morning, but it did it’s job, and the beast is held at bay for another day.

And it’s not been a bad day either. Mum (touching every bit of wood in sight) seems better, work, although busy, was at least productive for the first time in ages (as in I’ve been ploughing through my backlog and the pile hasn’t actually grown anymore), and Chris is going to help me out with my garage bill. And we can get respite care for Mum in November, so that’s provisionally booked, but obviously can’t be confirmed until the next couple of weeks is out of the way.

Am now sitting in front of the box where England are currently leading Russia 1-0, having gorged on pizza, and with belgian chocklit torte to look forward to.

Not a bad day at all.

You know it’s been a bad day when :

You wake up with yet another threatening migraine, and have to nuke it with drugs and an extra hour’s sleep (already on prescribed medication Matt - but they come in clusters linked directly to stress…)

You consequently look like you’ve been dragged through a hedge backwards when you drop your car off at the garage for its service because you haven’t had time for a shower

Looking (etc etc) doesn’t really matter because you then have to walk down to your Mum’s to give her the bath she wasn’t well enough for at the weekend, which is always guaranteed to be sweaty and wet. This time it’s messy too…Mum still isn’t feeling too good, and has a small attack of the Big D in the bath

Oh, didn’t I mention? The Big D is back. Didn’t seem to be as bad as before, but today hasn’t been very good. Spoke to Mum’s doc, could be a) Colitis : The Return, b) a bug or c) Mum working herself up into a panic over next week’s hospital admission and making herself ill. Doc thinks it’s most likely a combination of b) and c), so we’re hitting it with immodium and avoiding milk to start off with. I’m terrified that it’s a), meaning (aside from the obvious concerns) next week will have to be rearranged, which stuffs the rest of the year up

Garage calls me. The long and short of this is the £95 + VAT service has just turned into a £340 bill

Mum’s hugely overdue eye test shows up cataracts. They can’t do anything glasses wise to improve her vision, so it’s a hospital referral (approx 2 months) followed by two ops (one per eye) sometime in the New Year

Anyone want to take bets on me NOT having a migraine tomorrow? No, thought not…

Today marks the 13th consecutive day that I’ve had to take at least one migraine tablet. OK, so I’m (largely) keeping the migraine at bay, but still…that’s a heck of a run even by my standards. And I can’t remember the last day I didn’t take paracetamol.

Something has very definitely got to give. Having a holiday to look forward to is great, but expensive as therapy. I think Mum and I are going to have to have a serious chat about *the future* when she’s out of hospital and back on her feet.

*gulp*

It’s not cunning, but it’s good.

PROVIDED Mum comes out of hospital OK within the suspected timescale, and PROVIDED she doesn’t fall victim to anything else, and PROVIDED she agrees to go into respite care, and PROVIDED we can get respite care for mid November…..

We’re going on holiday!!!

Nothing booked yet - that really would be tempting fate - but some fairly solid ideas. We can provisionally book the respite care (and Mum has already agreed to this bit), but daren’t book the holiday itself until she’s actually discharged and OK. Well, as OK as she ever is. Well, breathing will do, because I/WE NEED A HOLIDAY!!!!!!

*happily rummages through assorted glossy brochures and looks at holidaytruth.com*

…HAD my Dad still been alive, I think he may have throttled my Mother by now. I’m certainly getting ever closer to it.

Take today. I’m making her bed for her, and am looking for the clean bed linen. I know it’s been washed and dried - her daily helper sorted this with her - but it’s not where it should be. When I ask, I’m directed to a pile of stuff on top of the laundry basket. Bingo, bedding, and…what’s this? A pile of t-shirts, washed and dried last week. I ask her why they haven’t been put away, she says she hasn’t felt up to it, hasn’t had the time. I point out (pretty gently) that as I’ve been at work since 8.15 (it’s now 5.15), and worked late two nights running after being ill, I’m not too sympathetic with this viewpoint. She replies with the fact that she’s nearly twice my age, and with a serious psychiatric condition, and I should take this into consideration. I point out that I do, which is why she no longer has to worry about preparing meals, washing up, cleaning, sorting out tablets, shopping, getting to the health centre / hospital etc etc - and I’m only talking about half a dozen t-shirts to hang up, one nightdress to put in one drawer, and a few oddments for another drawer.

Three days ago, she was worried about me running myself ragged between work and her, and being ill too. Yet she won’t / can’t do even a teensy weensy 2 minute job like that….AARRGGHHHHHHH!!!

Still, the day ended very nicely with Chris and I having a meal out at one of our favourite locals, and then meeting a lovely couple out the back on the canal towpath, who were being affectionately mugged by Pickle - ended up sharing a few beers in our back garden!! Think we may have some new friends

Today would have been my parents’ 48th wedding anniversary, had my Dad still been alive to see the day.

Two of her neighbours have been recently widowed, and they all agree on one thing - they feel robbed of sharing their old age together.

It’s so easy to let time slip by, get bogged down in the minutae (aka crap) of everyday life, and not stop for a second to appreciate what one actually has, and relish in it - until it’s suddenly too late. I am very guilty of this. I must try harder.

*raises glass to Mum & Dad*