Three weeks and counting

I've made it back to you at last.  I'm still in hospital, and have been here for over three weeks now, but I do seem to be making much more steady progress now and I can see the possibility of discharge.

As you know, I had a slow decline this time round, and I was getting really tired with it, but things escalated quite rapidly on 10th October.  In the early afternoon I emailed the Charge Nurse (J) on Ward 29 at Freeman to say that I thought I'd be heading their way soon, and a couple of hours later I was in resus in A&E at RVI after phoning Ward 29 and finding that they had no beds.  As it turned out I wouldn't have lasted long on Ward 29 anyway as I went from resus in A&E to HDU in the Critical Care Unit at RVI, and was there from the Monday until the Friday.

I had a fairly horrendous time in HDU at RVI, which I can't say a whole lot about on here as those involved are being disciplined (albeit unofficially), but one night was particularly awful and caused me a great deal of stress.  I'm sure the stress has contributed at least a bit to my slower recovery, although things were slow anyway, most likely because the decline was slow.

So I made it to Ward 29 at Freeman on the afternoon of Friday 14th October, and although I was still on the aminophylline infusion I was kind of doing okay.  Saying that, though, something didn't feel right ... it didn't feel like a stable improvement, and although I was able to get off the aminophylline by the Tuesday (I think) I wasn't convinced of the improvement, and actually felt like I was getting a cold.

I was right.  I did get a cold and the cold rapidly headed south to my lungs, giving me a none-too-pleasant chest infection.  I had a barking cough, I was exhausted, I wasn't sleeping well, I was wheezing more and more, and by the next Friday I was in HDU in Freeman.  Thankfully I only had 24 hours down there and was able to come back to the ward, but I was far from well and still very wheezy.  It's taken a heck of a long time for the wheeze to settle and to begin to feel like I'm mending, but at last I think I'm getting there.

For the second time this admission the aminophylline is down - as of yesterday - and so far I'm doing okay.  I was a bit tighter again this morning, and ever so tired, but things settled after nebs and then I slept the morning away and was woken for lunch.  I'm still very tired, but it's been a long haul with a lot of stress and upset, and a big set-back in the middle that itself made me want to cry.  The trouble is that crying can make my lungs tighter so I have to push the upset and stress to one side until it's safe to express it, but then I think others can be confused when it does get expressed as there may not be any particularly apparent reason for the tears when they come.  For the most part the tears still haven't come yet for this admission, and I have a feeling that they won't until I get home.  There's almost too much to process while I'm here, even though I have my own room (the benefit of being MRSA positive) ... I'm kind of numb most of the time ... just getting on with it ... almost afraid of touching the miserable bits, but I know that I will have to in the end.

I know that even what I'm writing here is probably coming across as emotionally detached.  I also know that it wouldn't be so detached if I could write about what happened at the RVI, but I can't.  Though I will say that what happened has left me feeling like I'd rather take the risk in the future of waiting at home for Ward 29 to have a bed, than end up back in ITU/HDU at RVI, even if that means I don't survive.  However, the RVI ITU/HDU matron is on the case, has been as reassuring as she can be, and has told me that if/when I'm in her unit again I'm to have the staff tell her that I'm there.  W has also said that if at all possible (i.e. if she's not working the following day), she will not leave me alone in the unit again.  I think that's probably all I can say about it.  Sorry to be evasive, but I feel I should be at least a little cautious about how much I say.

The next step is to get off the oxygen.  It shouldn't be too difficult as I'm only on a trickle of 2 litres now, and as I've said, my progress does feel much steadier now.  I've even been out for a proper trundle in the park today, with Dad pushing the wheelchair.

Nobody has yet mentioned home, but providing things continue as they are then I'm anticipating discharge by the end of the week, maybe Friday.  In my head it's Friday, anyway, though I haven't mooted the idea with anyone yet either.  I might do tomorrow.  Actually, these days the medics tend to leave it to me to tell them when I'm ready for discharge, and at the moment I think Friday is probably realistic.  Also, I have to get home by Saturday because the cat is terrified by fireworks so I need to get home to comfort him and most likely spend a large proportion of Saturday evening with his head stuck in my armpit as he tries to hide from the noise >^..^<  Bless him.  I miss him so much and can't wait to get home to him.  Here's hoping Friday is doable.

Extremely briefly

This is the shortest of short posts to say that I haven't forgotten or deserted you.  I'm in hospital.  Admitted on 10th October and still no sign of home.  It's been rough, very rough, but I think I'm making better progress now.  I'll get back to you with a proper post very soon.

A smashing time

Some of my friends gave me a ukulele as a graduation gift.  I've done a lot of music in the past, playing the violin, piano, and voice, and almost going to The Royal Acadamy of Music back in the mid/late '90s.  However, I've never played the guitar, so the ukulele is a whole new venture, but my friends thought that it'd be an ideal instrument for me as it's light, low-energy, and easy to play sitting (or lying) down.  I've only had the ukulele for two weeks, but I'm greatly enjoying learning it.

I went into town the other day in Taz - my electric wheelchair - to get some ukulele music and another book to teach myself as the book I'd previously bought doesn't give enough practise at the skills it teaches. I went to the main music shop in Newcastle city centre - Windows. It's a fantastic shop, and one that I almost lived in as a teenager with a love of making music.  It's also in the most beautiful old arcade - Central Arcade - which was first built as a commercial exchange and newsroom in 1869, but then rebuilt and opened as an arcade in 1906 after a terrible fire.

Windows has been in Central Arcade since 1908, so only just after the redesigned arcade was opened, and because of its age, Windows doesn't have a lift at all.  Most of the instruments and all of the sheet music are upstairs, so this made my quest to get ukulele music a little tricky.

I made my way to the counter at the far end of the shop, along the narrow aisles of the ground floor, past the expensive digital pianos and all the CDs and records (yes, they even have some vinyl!), and I asked the guy at the till for assistance from upstairs. No problem. All I had to do was wait at the bottom of the stairs, which were all the way back from where I'd come.

After a short wait a lovely young lady came down with lots of books she thought might be useful (I had explained to the man at the till what I was after), and also lots of advice as she plays the ukulele herself. Marvellous, and typical of Windows to have knowledgeable staff. I decided to buy a few helpful-looking books, and I followed her back down the narrow aisles to the till to pay. Still no problem ... until it came to leave...

There wasn't much space between the till and the end of the central racks full of vinyls and CDs; certainly not enough space to turn Taz around, so I had to reverse. However, I was reversing in a tight little space and not concentrating fully because a) I wasn't feeling too well; and b) I was trying to hold onto the rather large box of books I'd just bought in a carrier that was threatening to slip off my knee.

I reversed confidently into a set of free-standing metal shelves full of CDs, only now they weren't so full of CDs. I moved forward to disentangle myself from the shelves, but they had somehow attached themselves to the bottom of my wheelchair. The whole lot fell over. The lovely lady picked up all the CDs, and the grumpy-faced man who had earlier been on the till detached the shelves from Taz. Not so helpfully, he put them back to exactly the same place they had been, and when I then tried reversing again, I promptly crashed into them again. They were now rather bent. I eventually managed to turn Taz around and scoot up the aisle without damaging anything else.  The grumpy-faced, and now grumpy-natured, man held the door open for me as I left.


I hope he read the sticker on the back of Taz. It reads, 'Chaos. Panic. Disorder. My work here is done.'

Slow decline

When I was in London I picked up a bug. It started to go to my lungs, unsettling them greatly, and I ended up being given antibiotics by Dr H when I saw him in clinic on the Thursday before my party. I kept myself going for the party and had a great time, despite being below par. The antibiotics seemed to clear up any bacterial infection, but my lungs had already been set off on a downward slip and they're still going, but it's slow, very slow. I'm sick of it. I know that it's beyond the stage of doing a u-turn and getting better, but it's taking so long to slip that I'm getting very weary of it. I'm not too bad if I sit still, but as soon as I start to move I get very breathless and wheezy, and night times are rubbish.

I don't know what to do. There's not a lot I can do, which is why it's such a difficult place to be stuck. I'm not yet sick enough to be going to hospital, but I'm not very functional at home either. I've thought about seeing my GP, but there's little point as there's nothing they can do. I'm on all the medication they can give me 'in the community', and I'm nebbing as frequently as I can, and more.

I could email J on the ward and ask his advice ... but I know that he won't really be able to offer me anything until things go into crisis. It's so wrong that I have to wait for crisis before I can get help, but that's how things seem to be at the end of the medical treatment road. It's rubbish.

I'm tired of it now; tired of the slow decline. I just want it over, want it to snap so that I can (hopefully) fight through it, and then (hopefully) have a break from it for a few weeks. I'm tired. I need it over. I'm stuck.

Celebration!

It's far, far too long since I last blogged.  I'm sorry about that.  I've been a tad busy celebrating my graduation.  I had a big party last Saturday with sixty friends who I think (and hope) all enjoyed themselves with the help of an old friend of mine who plays the saxophone brilliantly and 'did his stuff' with a couple of his jazz-playing friends.  Oh, and we also also had lovely food done by Cafe Bar One, who managed to cater around all my billions of allergies, and those of my friends with other allergies/intolerances, which include gluten, dairy, egg white, quorn, and a low potassium diet.  Quite some achievement.

I hired the hall of St. Barnabas' and St. Jude's church - Barney and Jude's - which is the sister church to mine.  Barney and Jude's hall was done up earlier this year and has gone from being quite drab and unremarkable to being lovely, welcoming, relaxing, and a great venue for a huge variety of events.  I was looking for somewhere within my/my parents' price range when Barney and Jude's had just had its face-lift.  We went to have a look and it was perfect with tables, sofas, a platform area for the musicians, a bar (usually used for tea and coffee, but less of that and more wine and beer at my party), a variety of lighting options, and all in a decent sized hall at excellent rates.

We'd booked the hall from 4pm so that we would have time to set up and decorate.  At first this seemed like a long time, but actually it was just about right, although we'd had to take our party clothes with us and change in the toilets.  It might've been nice to come home to get ready, but we couldn't work out when we might be able to fit in a trip back here as the drinks and glasses were being delivered to the hall at 6pm, the food at 6.30pm, and the party starting at 7pm.  Before that there were banners to put up, photos to put onto boards and find places for, balloons to blow up, tables to move, light switches to locate (this took longer than you might think!), general decorating with party paraphernalia, and other bits and pieces.  Mum and J did most of it, while I did the 'quieter' things so that I had energy for the party itself.

I had a fantastic time.  I have some wonderful friends, I really do.  I'm so thankful to them for coming and helping me to celebrate and for giving me such a wonderful evening.  I'm reluctant to put up photos of the party on here because I haven't asked those in them if it's okay to do so, but I will leave you this evening with a couple of photos of the band:

The big event

I've been away, and am still away at the moment, in London.  I came down on Wednesday and have been staying with my brother, M, his wife, N, and my two young nephews, O and D.  It's been an exciting time for various different reasons.  Firstly, it was O's first week of school last week.  He's taken to it easily, but D has found it more difficult at nursery without O there too as he's never experienced nursery without O.  D has been the tearful one in the mornings, but apparently (and happily) he's been absolutely fine soon after M has gone home. 

The next exciting thing is that it's D's third birthday next weekend, I brought his birthday presents down with me and gave them to him on my first evening here so that I could see him opening them.  He's well into firemen and Fireman Sam at the moment - his party is going to be Fireman Sam themed - and I bought him a wooden fire engine and figures for his present.  His brother O has had a toy fire engine for a couple of years, but D was desperate to have one of his own.  I knew he was into firemen, but didn't know how desperate he was to have his own, and for the first ten minutes of having it he kept wrapping the box up in the birthday paper again, pulling the paper off, and shouting, 'Surprise!'  He was almost shaking with joy, bless him, and at bed time he wanted to take it upstairs with him so he could look at it in bed.  He then came skulking back downstairs, slunk across the living room floor, and threw himself on me, giving me an enormous hug.  It was like he didn't have enough words to say thank you :o)  Utterly delightful.

Now the main reason for me coming down to London this time, and my really big news, is that I graduated on Friday at The Barbican.  I had the most fantastic day.  My brother, M, came, my mum and step-dad came down from Edinburgh, and my dad and step-mum came down from Newcastle.  There were also two people I've met through the course of my degree with the Open University, and the (grown up) daughter of a friend I've made through the OU but who couldn't come herself.  What was also lovely was that another friend I've made through the OU - F - was graduating at the same time and was only one person in front of me in the ceremony, as we were both graduating with First Class Honours in Literature and our surnames are alphabetically close to each other.  F lives in Edinburgh so I often see her when I go up there to stay with my mum.  It was wonderful to be graduating with her, and we went together to get robed up.

The Vice Chancellor of the Open University is called Martin Bean.  Each graduate was presented to Martin Bean - a very jolly Australian bloke - and I have to say that it does tickle me that I was presented with my degree by Mr Bean, even if it's not the Mr Bean.

After the ceremony I eventually managed to find my family again amongst the crowds, and after we'd had a coffee downstairs we made our way outside, hailed a couple of cabs, and came back to my brother's house, where we were greeted by N, O, and D.  O and D had a little bit of time with Grandma, Poppa J, Grandad, and Granny B before going to bed, but once they were settled (and re-settled as they got up a couple of times, probably because of the excitement of so many family people around) the rest of us ordered Indian take-away for a celebratory meal.  Of course, I couldn't have this because of my allergies, but M made me some wonderful stuffed peppers and potato wedges, and rather than joining them in the champagne they all had (it contains sulphites, to which I'm allergic), I had some lovely apple brandy with Appletiser.  I do miss joining in with things like take aways and champagne, but there are some delicious alternatives, and what I had on Friday certainly felt like celebration food and drink.

My various parents have gone back home now, and I'm going home tomorrow, but I've had a wonderful time, a celebratory time, a very happy time.  I have a lot of good memories to take away with me, and I'm looking forward to getting copies of photos from all who took them, include the official photos.

In passing

Do you ever overhear snippets of conversations and wonder how on earth they fit into the whole?  I was passing a couple of young men the other day as I trundled through the campus of Northumbria University on my way home, when I heard one of them say to other, 'I have a real hatred of shoe laces.'  Was this a comment out of the blue?  Was it part of a wider conversation about shoes?  What does this guy hate so much about shoe laces?  I was almost tempted to turn around and chase after them to ask.  I resisted in the end, thinking that they might think I was stalking them, or at the least very strange.  No comments from the back! ;oP

On a completely different note, I saw the most terrible thing from the bus window the other day.  We were going down the main shopping street on the edge of quite a deprived part of Newcastle and I saw a young man, who I presume was the father, put a cigarette into a child's mouth.  The child must only have been about 4 or 5 years old, and the 'father' was clearly instructing the child on how to light the cigarette.  It was an awful sight.  It's bad enough to see teenagers smoking, let alone very young children being plied with cigarettes.  It made me angry, and so angry that I felt sick.  I think I would go as far as saying I consider what I saw to be child abuse.  What about you?