We arrived home fairly late on Wednesday 17 November 2010. It had been a long day, and I (Paul) changed out of my shoes as soon as we got in. As it was bin night, I did the bins as usual, but because I had taken my shoes off, Sue offered to take them out. She never does this, so of course I accepted at once.
Sue was just walking past the black recycling bin to open the back door, when she tripped over it and fell awkwardly. This was just after 10 pm.
I called 999. It wasn't an emergency, but they would send an ambulance when they had one available. It eventually arrived about 11.30 pm, and we set out for the hospital about midnight.
The x-ray confirmed that she had broken her arm, and we came home with a sling, painkillers and an appointment at the Fracture Clinic for Friday.
On Friday, they explained that it was not a good break. In fact, the actual words were that the break was "about as bad as it gets". She was referred to the shoulder specialist next Thursday.
On Thursdy 25 November, the surgeon, Mr Sarangi, confirms it is a bad break and is not mending well. Three options: leave it, replace the shoulder, or try to put the pieces back together. He strongly recommends the last one, with the option of a shoulder replacement if it doesn't work. We go with his judgement.
The operation took place on Friday 26, and Sue came home on Saturday 27.
In the following weeks, the pain slowly decreased, but any sudden movement was still very painful.
Life has mostly revolved around looking after Sue since the accident. We had to cancel our planned holiday in Lanzarote, but hope to be able to book another in the new year.
We returned to see the surgeon on Thursday 9 December, and discovered that it had not been possible to put all the shattered pieces of bone back together: the top part of her arm bone has been replaced by a titanium implant. Sue is now semi-bionic.
Sue started physiotherapy on Wednesday 22 December: no exercise yet, just gentle movements of the arm. Very painful at present. She needs to straighten her arm at intervals and perform a few other simple movements, putting no weight on the arm at present.
Since the mid-1990s, Sue has suffered from periodic bouts of mild labrynthitis, gradually getting more severe with the years. More recently, she would generally be okay in the mornings, but by the middle of the afternoon, she would be unable to walk around the office without holding on to the walls.
Also, during this period, there has been a gradual loss of hearing, primarily in the left ear.
Things were particularly bad in July and August 2003: everything seemed to be spinning around, even when Sue was lying down; her head seemed to be full of cotton wool; she felt sick, and was regularly throwing up for about two weeks; and she was unable to drive for about six weeks.
Things were improving when we went on holiday that year. Paul was doing the driving, but Sue could walk unaided. And then we went for a boat trip along the canal from the Gloucester docks, and Sue started feeling queasy again. By the end of the trip, she was unable to walk two paces without help. It took another week or two to recover from this.
Mr Noonis at the Dizzy Clinic helped. He gave Sue some exercises to do, and this improved things considerably. The vertigo when she was lying down disappeared completely. He did some balance function tests, and the results were fine.
In May or June 2004, Sue had a brain scan. We heard nothing for ages, then Sue received an appointment to see Mr Nelson while we were on holiday. We assumed everything was okay because they had taken so long, and postponed the appointment. But while we were on holiday, Sue had a long telephone conversation with Mr Nelson.
The story was not entirely straightforward. They had found a small tumour in her brain, in the space between the brain and the skull ("Don't worry - it's in a space that isn't used.") just behind the left ear, and they believed it to be benign. However, they did not believe it played any role in causing the dizzyness, sickness and deafness. So we have a tumour without symptoms, and symptoms without a known cause.
There were three options open to us: ignore it, and get another scan in a year's time; remove it; or bombard it with radio waves, which would probably kill it but might cause it to start growing much faster.
We thought and prayed a lot, and both decided the best option was to remove it, despite the advice that this has some serious associated risks and would not improve any of the symptoms Sue has been suffering. It may not be growing, but we don't know this and can't rely on it to remain as it is; and the bigger it gets, the greater the risk when it does have to be removed.
In October, 2004, we saw the Registrar, Mr Nichols, and went through the same issues and options in more detail. He promised to put Sue on the list for surgery, and said the operation would take place within six months.
Some other practical details: the tumour is likely to come back in 10-15 years' time. Sue is likely to be in hospital for six days after the operation, off work for six weeks, and unable to drive for six months (possibly three months, but also possibly twelve). Later, we were told the hospital stay was likely to be for 7-10 days.
We were sent a couple of pictures of Sue taken a few days before the operation. To help avoid wasting bandwidth, they are on another page: Sue's Pink Pictures.
In reverse order - latest details last, to help those who have been reading them as they appear.
From Sue...
Just to let you all know that in January they did another brain scan, and today I saw a new and very helpful Registrar to get the results! He says that the scan is completely clear (of meningioma!) and that they will scan me again next January and then write to me, not calling me in unless there is anything I need to know. They'll do that for 5 years, then scan me every 2 years for 4 years, and then again 5 years after that. If nothing appears in that time, then there's no more chance of it re-growing than there is of me growing something new and interesting somewhere else ...
I'm feeling about as normal as I ever have, which can't be bad ..
So thanks for all your thoughts and prayers.
Thursday 12: Sue went back to Frenchay for a brain scan, to see what they left behind after the surgery last year. We should get the results in a couple of weeks - in theory. Anyone want to offer odds?
From Sue...
I phoned the hospital regularly throughout October to find out whether anything had been sent to the DVLA, and eventually contacted PALS. With their intervention the consultant suddenly found time to reply to the DVLA! But there was still no confirmation that I could drive: the consultant's secretary could tell me that none of the boxes ticked should ring alarm bells, but all DVLA would say was that I could either wait until one of their medical examiners had had a chance to review the report, or get someone medically qualified to say I was OK to drive.
Not wanting to hassle the consultant's secretary again if I could avoid it, I went to see my GP, who checked a few things on the Internet and then said "Well, it says after your kind of operation you can drive once you've recovered, you seem to be recovered, so yes you should be OK to drive."
So I booked a refresher lesson with Alan's driving instructor. The plan was to go out for two hours, but after an hour - driving to work, up and down the M32, through the city centre and up Whiteladies Road (I stalled!), out to Cribbs Causeway and back along the M5 he asked if I was happy to settle for an hour, as really my driving seemed fine! I was very happy with that, I did find it quite tiring and think that after two hours I'd have spend the rest of the day in bed! But it was good to be reassured that I hadn't forgotten, and that I can still cope with the multiple demands of driving.
I offered to pick Ian up on Friday night, but he said he'd rather Daddy did - cheeky so and so! But I drove to the supermarket today, and let Paul drive us home again. Sometime soon I'll drive all by myself - that's the other thing I'll have to get used to, because of course for the last 5 months I haven't been in a car on my own!
Meanwhile at work... I'm now there 4 days each week, taking the 5th as annual leave to use it up! We're gradually getting back to 'normal' - whatever that is! - and we've recovered from the AGM.
On the family front, we managed a quick trip to Warwick at half- term and saw Alan, who appears to be doing well. Philip's in the process of choosing his 'A' level subjects: Maths, Maths, Psychology, Law and Physics are the current favourites, with Economics and Business Studies as 'reserves'. After Christmas Ian will have to think about GCSE choices, which hardly seems possible. Paul's schedule is as crazy as ever, but his skin is much improved following a course of light treatment!
From Sue...
DVLA said they wrote to my consultant on 28 August, and sent a reminder on 21 September, and did I know his fax number? (I did.) They were going to fax a 3rd request yesterday, and I also faxed him a letter.
I was going to get in touch with PALS (Patient Advice and Liaison Service) but when I rang them in the middle of September I got an answerphone message to say there was no-one there until the middle of October!
From Sue...
I saw the consultant this afternoon - actually it might have been someone more junior but I'd never seen him before. He seemed to think I was getting on OK but said I had to ask DVLA if I could drive again. And didn't think there was a request for information from DVLA in my file, so I need to ring them up. But we got back too late to ring them today.
He confirmed it was a benign tumour they removed.
[Ed: It seems the plan is for Sue to have another brain scan in January 2006, six months after the operation. This then forms the new 'base line' against which they track any future changes in anything they left behind. I don't see why they have to wait six months, but it's not worth arguing the point at this stage.]
From Sue...
I used to do this every day?
Well, here I am 10 weeks post-op and on Monday I went into work for the afternoon. The main reason was to have my photo taken, but my GP has signed me off and given me a letter saying that it would be a good idea for me to phase my return to work. Work are very happy for me to do this: after all, having me for 2 days a week is better than not having me at all!
It was quite tiring, but I survived, and even did a few useful things! While I've been away, the office has been completely transformed so that we can fit in another desk, so my main achievements were to plug some phones in and 'sort' the misbehaving display on one of the computers (at least I hope I did - apparently the computers have generally been misbehaving in my absence!)
The plan is that I go back in again on Friday and see how much that wears me out ...
Before that, we abandoned Alan in his room at Warwick University on Saturday. You can read 'Alan's guide to being a student' at http://www.livejournal.com/users/draknek/ - it's the entry dated Sep. 26th, 2005 @ 12:17 am (so clearly not going to bed any earlier there than he did at home). And when we left, his room looked remarkably like his bedroom at home BEFORE he packed: as if someone had designed an obstacle course. Even though he is not the noisiest of our sons, it is VERY quiet without him, especially during the day.
[Ed: Sue fails to mention the really exciting aspect of the trip to Warwick: on the way home, we got the car up to an average of 45.4 mpg...]
Today's excitement was getting my hearing aid! And my mother is right, sometimes switching it off is lovely! But so is hearing in stereo, and being able to hold a conversation on the bus. I am hoping that when I go for my follow-up appointment they will be able to adjust it so that pushing my hair behind my ear doesn't deafen me, but apart from that it is wonderful.
Next week is my post-op appointment with the neurosurgeon. I guess I will finally get my pathology report, and hopefully be told I am fit to drive. I haven't missed driving as much as I expected to, but then I have had Alan's services over the summer. Paul has missed my driving, as I tend to do the first shift while he reads a book ...
With thanks to you all for your love and prayers.
From Sue...
Over two weeks since my last update, which was just before we went away for a Monday to Friday break. Of course it was all more complicated than that, and included an afternoon's shopping in Cardiff on Saturday, taking Ian to my sister in Newbury on Sunday, and then getting away!
The hotel we'd booked for Monday to Wednesday was lovely, although it was a shame for Paul that the sauna was out of action. We explored Burnham on Sea briefly, and Sue found some nice walks. Then on Wednesday we headed over to the Community of St Francis where Paul was due to spend time with his staff and some of his trustees. The welcome there was superb, and their shower room was quite the best I have ever found! Anywhere!
I left Paul and his staff to their deliberations while I explored the local village on Wednesday afternoon, which was a great place, only marred by it being early closing day (so no cream teas on offer!)
On Thursday I walked to East Lambourn Manor Gardens, which wasn't too far, and has a deservedly Award Winning Tea Room. Coming back I got slightly lost - OK very lost - so was rather tired. This didn't stop me winning a game of Scrabble that evening, although we didn't have a dictionary and it is possible that two of my best words normally have other spellings...
We came home on Friday via a book sale in the village, and lunch at a farm shop we passed on the way - very good! Then Alan drove me to Newbury with Philip to collect Ian. We had tea with my parents, who enjoyed seeing us all.
And then I collapsed in a heap, worn out by all this enjoying myself! So last week was spent mostly 'pottering', with the most energetic activity being a trip to town to buy school uniform!
The weekend has been busy - we went to London, staying with Paul's parents but spending Saturday in Orpington with assorted friends from Sue's Durham days - a lovely time had by all! A late return on Sunday with Philip and Ian back at school today was an occupational hazard.
Hopefully 'normality' will now return and I can start pacing myself again, working out what is and isn't feasible each day. It's certainly quieter with Ian and Philip back at school...
Last update from Sue for at least a week:
At least I think it will be ...
The weekend typist obviously doesn't do overtime, as I still haven't heard anything from the hospital... and nor has the GP. We're not worried by this: it would be nice to see it in black and white but if there was anything more sinister going on I think we would have heard by now!
I'm still on the steroids, but now down to a very low dose, currently one every 36 hours. My method of cutting down has been to miss a dose and wait and see if my head explodes, and so far this has worked. Hopefully over the next week I can get down to every 48 hours and then wean myself off completely, but it will probably depend how much I get up to...
I'm also reducing the dose of my blood pressure medication. I'm getting very nice readings at home, but at the surgery yesterday Paul's GP could only get stupidly high readings (he was making me laugh!) so he didn't record it! I'm to take my machine in next time I go, to get it checked against one of theirs.
And I'm signed off work for another three weeks. Work are happy for me to go back part-time when I'm ready, as long as the GP writes to say he's happy for me to do so, which shouldn't be a problem. Whether I'll be ready in 3 weeks is another matter, but we will just have to wait and see.
Meanwhile I continue to take short walks, escape on occasional shopping trips, and receive visitors while the boys cook, wash up and look after most of the laundry, although even in these departments I am becoming more capable.
Now the good news - Ian is away next week, staying with one of his cousins in Hastings at his grandparents. I'm sure he'll be thoroughly spoiled. This gives Paul and I the chance to get away: Monday to Wednesday in a nice (we hope) hotel not too far from Bristol, then Wednesday to Friday near Taunton, where Paul is meeting for prayer and reflection with his staff and some of his trustees. I shall join them for meals, and spend the rest of my time relaxing with a huge pile of books specially put aside!
And the even more good news - Alan got AABB for his 'A' levels, in Maths, Physics, Further Maths and Computing respectively, plus A for his 'useless' AS Critical Thinking - his words not ours! So he's off to Warwick in September! He doesn't do 'excited', but we are very pleased for him.
And possibly the best news of all - Paul has enjoyed a couple of decent nights' sleep, despite the hot and sticky nights, thanks to remembering a comment from the Dermatology nurse he saw recently about how helpful Piriton could be! Long may that continue! Of course less sticky weather would help as well...
Added two 'lost' entries, for Wednesday 20 and Thursday 21 July.
Sue's pathology results:
For those who've asked, no I haven't had any yet. So today I phoned GP, who also hasn't had any. So I phoned hospital, and apparently my notes are out for the weekend typist, so can expect something more formal than "We'd be gobsmacked if it wasn't a benign meningioma" next week!
Watch this space ...
From Sue...
Have been meaning to do an update for a couple of days but have not quite managed it.
I'm continuing to do well, as long as I pace myself! The boys are still doing the washing up and laundry and any other housework I feel must be done, I'm resting and reading and watching Pride and Prejudice on video and old films. One reason I feel tired is that I can't seem to sleep past 6.30 am - don't know WHAT is waking me apart from my bladder, but I can't seem to get back to sleep properly afterwards.
Apart from that, this has been a busy week: my parents came with my brother Ray on Tuesday, and it was good to see them. Ray brought us Chard, marrow, courgette, beans and a big fat cucumber, so healthy eating has been the order of the day since!
Now Paul's brother Roger has come to stay for a couple of days. He arrived on Wednesday to find me in bed, after I'd spent the morning on a very short organised walk near work, a flying visit to work to deliver a letter, and a bus trip home. Somehow that was enough for one day. He is a delightful houseguest, very laid back, helpful, and the boys love him to bits.
This afternoon Paul and Roger took Philip and Ian to @Bristol while I pottered at home and had a short visit from a work colleague. Meanwhile Alan went to a sleepover in our car last night, and discovered that taking his friends home took longer than expected! But the car has returned unscathed, he wasn't TOO late to work, and although he didn't have time to eat a proper meal I did at least manage to throw some food at him on his way out.
Tomorrow there's a hypothetical shoe buying trip with Roger as chauffeur, but it may turn into the end of a monopoly game... partly depending how I feel, and partly whether I can persuade any of the boys to get up early.
Have been glad to have visits and phone calls, looking forward to seeing more of you as I get out and about a bit more. Thank you for your love and prayers and kind thoughts.
From Sue...
I'm still upright!
Although I have rather overdone it today. :-(
Basically going on very well, finished my initial short course of steroids on Thursday morning and then saw the GP. We agreed I probably need to continue taking them a little longer: on one tablet a day my head starts to throb in the afternoon, which isn't good.
So here I am on 2 a day for a few days, which would be fine if I hadn't gone to Sainsbury's on the train with Alan this afternoon to buy food for next week. Actually even that would have been fine if we'd taken another of his brothers with us and / or not bought so much food ... We live and learn. Two hours back in bed has put me back together again, although I'm not doing a lot more today. Paul is cooking and the boys are washing up (which is something I abdicated responsibility for some time ago!)
But the shopping trip made insuring Alan to drive the car for a couple of months look like a good deal!
Still up for visitors by appointment. And determined to get myself out of the house for a little while every day. My step counter is recording 4-5000 per day now, which is a good place to be at, I feel. Please, if you want to come and see me give me a ring and DON'T BRING FATTENING FOOD! Those steroids are lethal, my appetite doubled when I started taking them, and I'm now starving all the time. Having lost a stone before the fated April date, and almost half a stone since then, I really really don't want to put it all back on again!
Oh and I have a review with the consultant at the start of October. I phoned to ask when it would be so that I could get my medical forms off to DVLA. Would have done that today but took them out with an envelope and then found the address isn't on the form!
Love to you all - sorry for not replying to many individual messages. But right now if I don't get off the computer Ian and his friend are going to break the window on the stairs!
From Sue...
Continuing to make good progress. I get tired if I do too much, and that includes staying upright too long, so early nights and daytime naps are the order of the day. But I have managed to get to the end of the road and to the GP surgery in the last couple of days, on foot, with a boy as escort 'just in case', and feel reasonably confident that I'm safe outdoors now. :-)
Paul has started returning to work on a regular basis and gradually catching up on the last couple of weeks. The two younger boys are here to wait on me as necessary: our eldest comes home on Thursday so I shall be even better cared for then. They're doing well: responding to the summons of the pager on the phone very promptly!
So I think I could be 'open for visitors' now if any of you wanted to call in and rescue me from the delights of daytime TV. Please phone first, in case I'm having a bad day. I don't know if there's a possibility that the swelling crisis of last week will strike again - the short course of steroids has certainly been very effective so far - but if it does I shall shut myself away again until I've got it sorted! I'm sure you understand!
Love to you all, and thanks for all your thoughts and prayers.
From Sue...
Yes, really Sue, back at the computer. I said I was sick on Tuesday, and in pain on Wednesday, despite my full complement of painkillers - well they were NOTHING to Thursday, but before you all panic I am almost back to human again!
Thursday I was sick most of the day, and in horrible, throbbing, blow the top of your head off pain. And I couldn't keep much down, including painkillers. Not a happy combination.
Anyway, off to the GP in the afternoon - really I should have asked for a home visit, but I don't think I realised quite how bad I was until I came to leave the house. Paul's parents were here: Paul's dad used to drive ambulances so insisted on coming too because I don't think he trusted Paul not to let me fall over. He gets giddy, especially walking backwards...
It wasn't a GP I knew, and the consultation started slightly unpromisingly: she asked if I'd been told to expect pain. Well yes, of course, but NOT LIKE THIS! After that she was lovely, said she needed to phone the hospital before doing anything, and put us in an empty consulting room where I squeezed Paul's hand to the throbbing pains like I used to during the contractions of labour. That's all a long time ago now, but I'm sure this was worse.
Anyway we were there for quite a while - hospital doctors who know who they're talking about take time to be tracked down, but one was found, and came up with a plan! Anti nausea drugs and steroids overnight, back to the ward for midday Friday. Paul nipped out to the chemist, and came back just as the GP suggested giving me an injection for the nausea. Brilliant!
This morning I felt (almost) like a new woman. We got back to the ward, and while they found somewhere to put us I spotted the Registrar and he confirmed he was expecting to see me. We parked in the dayroom, and I told him my story, he nipped off to see the Consultant in the theatre and came back to say they would do a CT scan to check I didn't have water on the brain. But more likely there was just some inflammation so the steroids should do the trick, which they certainly seemed to be.
We nipped out for a sandwich, then Paul disappeared to sign cheques at work (salaries, people don't like waiting for them you know!) and I walked to my scan which didn't take long, and came back, and about 2 the registrar reappeared to see if it had happened, and dashed off to get the results, and came back and wrote a prescription for steroids. The brain scan looks very good, so obviously the rest of it is still there. So then it was off to the Pharmacy, on to the restaurant, and a phone call to summon my chauffeur.
It's just as well I was feeling better: the journey home was mostly crawling pace, took about an hour! However the car's mpg has gone up from 43.3 mpg to 43.9 mpg since I went into hospital, so that's good.
And yes, it is now time I went to bed, I have been up since 9.30 am so that's almost 14.5 hours! A record!!!
Love to you all, will try to do individual replies but not today...
From Sue...
Following a quiet - very quiet - weekend, we made a trip to the GP's surgery on Monday, to get a certificate for work, a blood pressure check, and the stitches taken out. To be honest, I'm almost past caring about the blood pressure, since I don't think there's much to be done about it apart from taking the medication. Readings at home have been OK, but it was of course higher for the GP, fairly understandable under the circumstances.
I saw the nurses for removal of stitches, and in the absence of a proper appointment I had been fitted into their 'catchup time'. I hoped this wouldn't bother them too much since it was clearly not going to be a five minute job. In the event they were fascinated, not having seen anything quite like them for some time - a form of blanket stitch had been used, apparently. "Very interesting for us", was the verdict. Not too bad for me either, and I do now feel more comfortable at the back of the head.
We came home to find the hospital had sent me what looks like a cross between scissors and a stitch unpicker, which we think was actually for removing the staples which had been used to secure the dressing to my head until last Thursday. They did say they would send the staple remover to the surgery if I was having them out there rather than at the hospital, and had clearly forgotten that part of the job was already done.
Bliss! Paul helped me wash my hair! The shaved bit feels horrible, most peculiar, but better clean than greasy!
Tuesday has not been a good day: I woke up feeling sick, was sick, felt better. Had breakfast and pills (some of them need to be taken after food, which is tricky when you feel sick!) and went back to bed. Got up, but spent the rest of the day in a lot of pain if I moved. Or sometimes even if I didn't. Whimpering gently helps. Feeling a little better now, so off to bed and hoping for a better day tomorrow.
Oh, and before I was discharged we were expecting to go back to the hospital tomorrow (Wednesday) to see the consultant and get the definitive answer to what it was in my head - although the registrar said that having looked at it they'd be 'gobsmacked' if it was anything other than a benign meningioma. They phoned after we got home to say that wasn't going to happen: I'll get a letter in a couple of weeks time, and there will be a follow up appointment soon. We just don't know when.
Thank you for all the cards, meals, prayers and love which have come our way. Really appreciate them all!
We don't have an appointment on Wednesday at the hospital, after all. But we did have an appointment with Sue's GP and the local nurse this morning.
The GP had a copy of Sue's notes from the hospital, and says they were very happy with her. Blood pressure is slightly higher than he would wish, so keep taking the tablets. Come back for another checkup in two weeks.
The appointment with the nurse was to get the stiches taken out. Not entirely straightforward. Firstly, there was an interesting question, never directly addressed, of whether she was authorised to take the stiches out. She was clearly concerned that it might be a bit early: the normal procedure is to remove them on 'day 7', which would be tomorrow. Eventually she found a copy of a letter from the hospital which said to remove them today, so that was fine.
Then we discovered the stiches had been tied in an unusual way, and someone else was called in to discuss the best technique for removal. Then she started, and it all went fine until the last knot, which caused some difficulty for several minutes. But it all came out all right in the end. The wound looks as well as you could hope after only a week.
When we reached home, the post had arrived. There was an odd package for Sue. If you remember, last Wednesday they were planning to send a tool for removing the staples in her neck... well, one staple extractor arrived safe and sound this morning. It seems my jokes about a DIY Brain Surgery Kit were not so off beam, after all. We can't think of any other reason why it was sent here, and not to the surgery.
Sue is slowly improving, but still feeling sick and in pain, not really up to visitors. She goes back to bed regularly during the day, and when up can do little more than sit. But it is still progress. Neither of us got to church this morning.
One other thing to pray for: it would be nice if she didn't have to surrender her driving licence. It's all a bit complicated, but we are not likely to hear from the DVLC on this for a week or two.
(Paul...)
Thanks to everyone for your prayers: Sue is home!
When I arrived at the hospital, Sue was just finishing her lunch. She was looking so much better, with her hair washed and the tubes taken out of her hands. Even better news: the doctor had told her it might be possible for her to come home today, depending on how things went and whether they could get her drugs packaged up to take away.
I rang mid-afternoon and there was no news. Eventually, just before 7 pm, Sue rang home and said they were letting her out. What's more, they have taken the staples out, so that's one less thing to worry about. She needs to go back next Wednesday for a post-op review, at which point we will get the results of the pathology tests on the tissue they removed.
The discharge paper says "excellent post-op recovery", so thanks for your prayers. Sue has just gone to bed. She doesn't feel too good, but she has just climbed a set of stairs for the first time in nearly a week, and walked much more than yesterday, so she's entitled to feel something.
So, two more prayer requests: that the recovery continues, and there are no nasty surprises next week. Thank you.
(Sue...)
Waiting for my drugs, then I can go home! Have been waiting all day, wanted some more at lunchtime and initially couldn't have any, because you can't have drugs on the ward without your drugs form, not even paracetamol! And mine was at the Pharmacy, waiting for the hard stuff!
Fortunately a nice nurse went on a mission to the Pharmacy for me so I didn't start moaning. Did NOT want to be kept in!
Alan is in London, with more bombs / pseudo-bombs going off. Hope he's had the wit to contact Paul [he did], and that his friends have rung home too [they all got called...] I shall be glad when he's at Grandma's.
(Sue...)
A few things I have learned:
Don't expect to sleep after brain surgery. They wake you up every half hour to ask where you are, what the date is and who the Prime Minister is. They shine a light in your eyes, take your blood pressure and check your oxygen levels.
They left me on extra oxygen for 48 hours, until it occurred to someone to check whether I needed it or not. I can still "feel" the nose clip.
Least useful purchase for hospital: ear plugs, flight socks. Most useful: pyjama shorts, teeth wipes, small duplicate book. [I'm sure the ear plugs would have been useful the first night if I'd remembered them. But the flight socks - if you need them, they'll give you surgical stockings which go ALL the way up your legs. If you don't need them, be grateful!]
Oh, and if you lie on your catheter drain, it stops working and you get tummy ache. And you lose all sense of whether your bladder is full or not. Interesting...
More postcards from the boys. Ian had to capsize [Ed: he is sailing this week, as his activity in the school activity week], so it wasn't accidental. Sounds as if he is loving it, and doing the laundry!
Philip is less impressed by his work experience. He is moving stuff around, mostly.
I miss them.
Paul's back is playing up - driving too much? We'll get me out of here as soon as we can.
Hospital food - okay, but not terifically appealing. I can't help feeling that a Ward fruit bowl would do as much good as the rounds of tea and coffee - which would benefit hugely from decaff options. [Of course most people get 'visitors bearing fruit', which I didn't, not that I'm complaining. Apparently someone who works at Frenchay did come and see me twice in her lunchbreak, and I was asleep both times! But the decaff options on the tea trolley WOULD have been nice.]
(Sue...)
I don't feel like I've slept at all well. And the inspiring thought [Ed: a calendar she brought in, I think from work] doesn't: success consists of getting up one more time than you've fallen down. If only I feel I'd stood up once.
I'm crying and in pain when the nurses come round. They're lovely and encouraging, sit me up a bit more and get me into a chair. The pressure's off the wound and I feel better. I even ate ReadyBrek for breakfast.
So I alternate the day between spells in the chair and spells in bed. Mr Porter comes round and revises the drugs - more for pain, I think. And steroids. He's happy that the wound is dry, but says he has no news from Pathology - so he may discharge me on Friday and see us next week with the results.
Later, a nurse inspects the wound. Apparently the dressing is stapled to my skin, not stuck with plaster. So if I have stiches out at the surgery they'll send a special tool.
Paul's meeting finishes late, so he comes in around 4 pm. Exhausted. But a good meeting. Alan has sent him a text [Ed: Alan is in London with some friends], the boys are okay. I send him home for tea and postcards [Ed: Sue prepared some postcards for the boys to fill in - tick the boxes... I got lost, I had a shower, that sort of thing]. When he comes back, I hope he will know his movements for next week.
Just as I start eating my tea, a porter arrives to take me for a CT scan. No-one knew I was going. Fortunately I didn't fancy more than a sandwich - very nice tuna and cucumber - so I swallow half of that and my drugs before they find me a wheelchair.
Before Paul arrives, they've moved me to the far end bed. I don't like it as much here - lying on my less painful side I can't see what's going on and if the bed next to me is curtained off I fear I'll be forgotten.
New admissions around me, and an emergency where I was. I'm still next to a window, and it's open so it may be better than last night: the French doors had been shut and I ended up putting the fan on. It nearly sent the flowers flying...
Now able to walk to the loo, with help.
(Paul...)
I was rather later reaching the hospital than intended, and the person in Sue's bed was most certainly not Sue. My first thought was that they had moved her to the high-intensity care ward 5 - or perhaps it was more serious than that? But they must have my phone number - they would have rung...?
I found the noticeboard with the patients listed against their bed numbers. On the second attempt, I saw Sue's name and her new bed number.
She is looking much brighter. Not feeling as sick, not in as much pain, and one of the tubes has been taken out of her right hand.
I open the window, but it doesn't open very far. Sue wants the fan on, so I switch it on, and settle back in the chair on the other side of the bed. There's an odd noise, and I realise that the fan is rotating, and each time it turns it hits the vase of flowers, knocking it closer to the edge of the cabinet. I race round and jut catch the vase in time. For some strange reason, this feels like a major achievement.
Sue tells me about the staples. I tell her not to worry: Steve (the chap we live with) is bound to have a suitable tool. For some reason, she is not impressed by this.
(Sue...)
Monday is a bit of a blur. Up at 6, to be told they didn't know if I was first or not because I was the only one on Mr Porter's list. So got on with showering and changing into a fetching low backed gown and thick white surgical stockings. Paul came in just before the anaesthetist and then I was off by 9 am.
Back on the ward by 6 but not a lot else to say.
Tuesday: it hurts. And I feel sick. So I spend most of the day feeling sorry for myself. Very hard to get comfortable. Tuesday drags - I doze for 10 minutes at a time but it feels like longer until I look at the clock.
(Paul...)
Sue looks, understandably, rather rough still. There's a bit of blood on her left eyebrow remaining from yesterday, tubes in both hands, a catheter to drain the urine, plasters where other tubes had been, a serious bruise on her forearm, and an oxygen tube that makes it hard to get comfortable. She hasn't been sick again, but feels that she might. The painkillers don't seem to be working - but presumably it would be much worse without them. She can't chew, which is not a problem I had anticipated - to get to the skull, they had to cut through some of the muscles in her neck.
Sue didn't sleep much last night - it seems they were taking her blood pressure every half hour, and shining light in her eyes. The ear plugs wouldn't have helped much with either of these problems.
(Paul...)
I arrived soon after 7:30, and Sue was struggling into her gown. I tied it up. The registrar came round and did the warnings thing again: you may die; you may be paralysed; you may have a major or minor stroke; you may lose the use of half your facial muscles; you may catch meningitis... There is a 90 - 95% chance that nothing serious will go wrong, but we can't promise anything. If you still want to go ahead, sign here... She was still determined. "I want that thing out of my head."
Then the anaesthetist comes and does his bit, slightly less worrying. But then, he is the one trying to keep her alive despite all the surgeon gets up to. He warns her that there will probably be lots of tubes coming out of various places when she wakes up, so don't panic. And she is much less likely to be sick afterwards - they have much better drugs these days.
At 8:36, Sue is wheeled off the ward, and I head off to work. The operation will probably take at least 5 hours, and the nurse suggested I ring about 2 pm. Sue may come back to ward 4, or she might be taken to ward 5 (high-intensity care, presumably if they are particularly worried about her).
I ring at 1:30 - no news: try again at 3. Again, nothing - try in an hour. At 4, I'm told that if they have heard nothing in another hour, they will ring around and try to find out what is happening. At 5, I talk to several people, and eventually someone locates her 'in recovery'. When should I come in? Try around 7 pm.
At 7:15, I arrive back in ward 4 as Sue is throwing up. She feels sick, her head hurts (there's a surprise!) and she is very sleepy, but she knows her name, the date and her birthday, so it's looking good. I tell her a bit about the boys, but I'm not sure how much is taken in. I couldn't find her ear plugs at home, which is bad news, but I suspect she will sleep tonight whatever happens on the ward.
I've slept better, but I've slept worse too.
The mysteries:
It's all quite surreal: I sit around all afternoon and evening, and no-one comes near me except to offer tea and drinks [Ed: she means no hospital people - her loving family were around to begin with, and I came back later in the evening.] At 9:30 I ask if anything is happening apart from the nurse doing my blood pressure, and, yes, I'm supposed to see a doctor. That happens after 10 pm. Blood "will be taken later".
My blood pressure is still high - 86 - but no-one seems worried. From first on the list, I now seem to be second or third.
At 11 pm I ask about the blood. Most people have settled down for the night, and I'm still squeaking around in my flip-flops. I don't know where I should clean my teeth or get undressed... I settle on the shower room, but can't work out how I'm going to shower in a very deep bath with nothing to stop the water from going everywhere.
I go to bed. One of my fellow inmates keep pressing her bell by mistake. I CAN'T FIND MY EAR PLUGS! I listen to my CD. I'm cosily nodding off when my ward phone rings - I hear my name. I'm now first on the list. [Ed: one advantage of a bed next to the nurses' station...]
I go and find out what's going on. Paul is supposed to be coming in at 8:30 at get my chain and bracelet. By that time I'm supposed to be in theatre. It's only midnight so I go outside in my pyjamas and call him. He's not in bed; the boys are nearly all in bed, but Alan is not feeling well - headache and sick. Ian found the trainers he needs for sailing, and he has got his lunch ready. I guess they'll cope.
I just wish I wasn't here but home with Paul. I need the loo again. I'll squeak off and then try to sleep. My legs itch, my bum is sore, and the bin in the ladies' loo is too small.
(Dictated by Sue to Paul...)
I spent Saturday night in dithering denial. Found most of the things I was looking for, but completely failed to pack my case.
This morning, I phoned the ward about 9 am, but they didn't know if there was a bed or not - they would call back. I carried on packing, still dithering. Paul nipped up to church, and got me and the bed situation prayed for.
Plan A had been to leave home at midday, go to a pub near Frenchay Hospital forlunch en famille and then head for the hospital at 2 pm. Except that at midday I was still not packed, Alan was not dressed, and the hospital had not phoned.
I called them about 12:30 and found that I did have a bed. A final flurry of packing, and we were off. Too late for the pub, so we opted for hospital restaurant food. No brilliant, but Alan reckoned it tasted better than the stuff they serve in France! This says more about his taste in food than the quality of the cuisine. (The context for this is that he is about to spend another week in France with Mark Howe, so French food is on his mind.)
Off to Admissions. Nobody there. Checked with the nearest ward, and was told the receptionist would be back soon. Reached the ward just after 3pm, an hour 'late'.
The good news - I'm next to open French doors, and I have a fan. The bad news - my blood pressure is something over 89 (it's supposed to be under 80), so I'm hoping it will settle down before they take it again, and that the anaesthetist won't panic.
I'm waiting for the anaesthetist now, trying to work out if I get more out of breath than other people my age when climbing hills or stairs. If you're my age, please tell me how short of breath you get. How steep is the hill? How many flights of steps???
(From Paul...)
Sue rang to say her blood pressure is still over 80, but the anaesthetist does not seem to be worried by this. The operation is on for tomorrow - she should be going down for surgery about 8:30 am. I'm planning to be with her around 7:30. She can't find her ear plugs.
We saw the new consultant, a very friendly and approachable chap who did his best to put me off having brain surgery by telling me everything which could go wrong, even though it isn't likely to. And at the end of all that, he said "I think we've booked you in for Monday 18 July", made a phone call and confirmed it.
So I go in on the Sunday, and will be in for 7-10 days. During that time:
Ian will be doing a non-residential sailing course with the school and had better not fall in too often because he'll be doing his own laundry ...
Philip will be doing his work experience, recycling computers the other side of Bristol, and had better not get lost too often because Paul won't be able to drop everything and drive off and find him ...
Alan will be going to London for 4 days with his friends, so at least he'll be keeping himself out of mischief, although it's a shame because he at least knows how to use the washing machine!
Paul will be at a meeting of his Trustees while I'm actually having the op, so they will forgive him if he's a little distracted; skipping a major prayer meeting with his Trustees so that he can be there when I come round; and co-hosting a meeting for Bristol's church leaders on the Wednesday which is considering whether the next Jesus in the City conference should be in Bristol. Apart from that I think his diary's fairly clear while I'm in ... and completely blank for the week after!
Oh, and my blood pressure. It's OK, not as bad as it was in April. The lower figure is a bit on the high side, but my GP tells me that if you're going to have high BP it's better to have a small gap between the lower and the higher figure. So I'm going to go back on the medication at the start of July, lowest dose possible, and then increase the dose if that doesn't do enough.
Sue's consultant is now booked solid for several months, and suggests she transfer to another consultant. This way, we are told, she should be able to have the operation within 6 weeks. We agree.
The new consultant says he can't give Sue a date for her operation until after he has seen her. The date for the consultation is 15 June.
It seems that Sue's lower blood pressure figure should not be over 80. We buy a monitor, to check it at home - this seems to be the only way to have any idea how she is doing.
Sue's blood pressure taken at the surgery today: 145 / 90, which the nurse thought was fine. But we think the lower figure shouldn't be higher than 85.
Sue's operation has been cancelled - postponed - because her blood pressure is too high. They didn't think to check it until it was too late to do anything to put it right. We are not impressed.
