A bit of a mix

I'm home. I got home on Tuesday evening after a lengthy wait for some of my meds that had inadvertently been left by the pharmacy hatch rather than being sent up to the ward. They'd been ready for three hours when they were finally located and then collected. Oh well, such is life. I never expect a quick getaway from hospital so I just get on with the wait and while away the time (or should that be 'wile'?). Anyway, I got home in the end and it's great to be here. The cat has been ever so cuddly >^..^< It's wonderful to be in my own surroundings with my own things and no hospital clatter :o) The only thing is that I'm exhausted and finding it hard work being at home too. My lungs aren't fairing too badly given how recently I've been discharged. The main problem is the anaemia and the iron. It's wonderful that the pharmacist managed to find a preparation of iron that I'm not allergic to, but I am having other side-effects - gastrointestinal effects that are getting me quite dehydrated, even though I'm trying to drink loads of water. I'm told these effects should wear off fairly soon, but in the meantime it's not pleasant and isn't helping me achieve a general feeling of wellness. And there's the anaemia itself. My Hb was still around 8 when I was discharged, which was a bit controversial, but as I have a suppressed immune system, and I'm a sitting target for infection the longer I'm in hospital, it was thought that I'd probably be better off at home. I agree, except that I don't feel great and I can't do very much of anything ... even staying upright is a bit of a challenge at times so I'm spending a lot of time sofa surfing and thinking about doing some study to catch up, but I don't have the mental energy to concentrate :o( I must get my head around some study at some point though, because I'm getting quite behind with my course now. I'm hoping that the gastro effects of the iron will soon sort themselves out, and that then I'll feel a bit better in that respect. The iron will take several weeks to have full effect on my Hb (so I'm told), but I should hopefully begin to feel some benefit much before then. I have to go for blood tests at my GP surgery the week after next to check that my Hb is starting to come up, and if it isn't then they're to look closer into the cause of my anaemia, but I sincerely hope that things are significantly improved.

One of the very disappointing things of this whole situation is that there's no way that I'm going to be up to doing my gym marathon on 25th. I know it was an (over) ambitious date to set in the first place, but I needed to set a new date when I did ... and now I'm going to need to set another one. This is something I desperately want to do, and I will do, but I'm not going to be stupid and do myself in in the process. I want to do it before Christmas, and I want to do it before the pre-Christmas craziness gets too crazy, so I'm now proposing to do it on 15th December. This gives me four and a half weeks from now to get back on track with health and fitness, and is hopefully more realistic than 25th November. I am disappointed, but I know that I'll do it, and in the end there'll be an even greater sense of achievement. Oh, and it gives people more time to sponsor me, or donate through my Just Giving page.

So yeah, a bit of a mix - it's great to be home. It's great to have my creature comforts and be with my little black creature (the cat). It's not so great feeling not so great and being so worn out. I'll press on and come through in the end, and while I wait I'll snuggle up in my cosy new slanket that I'm loving :o)

Sensitive

Friends are a wonderful gift and something I value most highly. I am extremely thankful for all my friends and know that life without friends is a very lonely life...



...And this is where this post gets extremely tricky. I don't want to come across as selfish, self-pitying or bitter - I'm not - but there's something I want to say that might be challenging.



Life is fragile and this is something I'm confronted with everytime I have a bad asthma attack. I am almost always faced with the very real possibility of my death, and however many times this happens I never get used to it. It's been previously said to me by friends that I've got through the attacks before so I'll get through again, but this isn't necessarily the case and it actually makes me feel pretty isolated, because it's a denial of the reality of the situation. It denies my experience. It denies the truth. It negates my fears. I know it's a defence mechanism for them so that they don't have to think about mortality - mine or their own - but it's unhelpful. The fact is that each time I go into crisis I am fighting for my life, and the fact is that I've already out-lived my life expectancy.



Asthma attacks are not only frightening, but also extremely lonely experiences. When I'm in the midst of a crisis I can't breathe enough to speak. I can't tell anyone how scared I am. I can't ask for anything I might want. There may be plenty of physical contact but it's from professional carers and almost exclusively involves the touch of a stethoscope, the prod of a finger, the jab of a needle, invasive and painful blood tests. Of course I appreciate that this is all absolutely necessary in the attempt to keep me alive, but it's all so impersonal and clinical ... and lonely. What I crave for at these times is not only for my life to be saved, but also the gentle touch of a friend; the company of somebody who cares about me for me; someone to hold my hand; or just have someone be with me, sit with me, help me through by being there with me. I truly appreciate how difficult it must be to watch someone you care about go through the experience of a severe asthma attack, but I don't believe it's actually as difficult as going through it. I also appreciate how difficult it is to be made to confront the reality of death and to consider your own mortality, but again, I don't believe that's as difficult as having a head-to-head with death. Now I'm not saying that I want crowds of people or a bedside vigil when I'm in crisis, but the company of a friend and that possibility of caring, non-clinical touch would sometimes be so very much apreciated. Yes, this has happened sometimes, and W in particular has been amazingly wonderful in this and many, many other respects, but usually people stay away until I'm well on the mend ... perhaps easier to face ... guaranteed to stay alive in the immediate moment. Of course these visits are extremely welcome and very important to me as well, but in a different way.



I entirely understand that people have busy lives and that they need to get on with them. I don't want to be the centre of attention. I don't want to appear to be ungrateful for all that my friends do for me and the time they give me when they do visit ... it's just ... Well, I need people when I'm desperately ill, when I'm scared, when I'm trapped in the isolation of my head because I can't tell anyone my fears or my needs because I don't have the breath. I need people to sit with me and just hold my hand when I'm in that post-attack big sleep. I may only be intermittently aware of their presence, but the fact that someone cares about me and is prepared to sit and be with me during those times fills me with hope, appreciation, love, and thanks. I know that it's boring sitting with someone who's asleep. I know that it's still difficult witnessing the aftermath of the struggle for survival, but it's through that struggle and in the aftermath of it that I most need love and support...



... I don't want to die alone or lonely. Would you?

********************

This has been very difficult to write and I've been very unsure about posting it. I don't want my friends to feel unappreciated or got at. I just want to be honest, tell it how it is and maybe make all of my readers consider what they can do to help someone in the moments of life and death. Even if you feel that what you are doing is nothing, or that there is nothing that you can do, the fact of being there can be the most valuable thing you can do or give.

As expected

It happened. I splatted. I just about lasted the Thursday, although I was going downhill significantly by the evening and knew that I’d end up in hospital by Friday. I think I mentioned that I had to go to my GP early on the Friday morning anyway for my blood results, the conclusion of which was that I’m anaemic and they didn’t know how to treat it because all the iron preparations they could find had something in that I’m allergic to. After we’d talked/gasped through the blood results the doc asked, ‘So how is the breathing?’ which really was a rhetorical question in the circumstances. My short answer was, ‘Rubbish. I’m going to hospital after this,’ and I’m sure that had I not told her I was going to hospital, going directly to hospital and not passing go, that she’d have called the ambulance there and then. She looked fairly reluctant to let me out of the surgery in the first place, but I just about managed to explain that I’d seen my consultant the previous day and we had a plan.

I got home and I got worse, probably precipitated by trying to walk and by having to make various phone calls to the hospital to get hold of my consultant. By this time my fantastic friend W had come over, ready to take me up to the Freeman as soon as we heard back from the consultant’s secretary to say that the ward had a bed for me, and within fifteen minutes of the call we were on the ward ... and I was going further downhill. I think that once I get to hospital sometimes my body kind of knows that it’s in a safe place to let go and I get worse ... it’s a bit weird really, but it’s happened on more than one occasion. So anyway, from then it was a long, hard battle, with the intensive care docs coming up to see me regularly and phoning the ward to check on me at other times. I really, really hate ITU so was relieved to struggle through without having to go there, but I know it was a close call. It took something like 22 hours for things to eventually settle to a more manageable state, and of course afterwards I was completely exhausted so I fell into my post-attack big sleep. My lungs still weren’t great, but they were a whole lot better than they had been on admission and I was able to sleep reasonably well, until I had a very rude awakening on the Sunday morning with my lungs having gone into tight spasm again and I was right back at the beginning. I had another 20 or so hours of battle and ITU coming up and phoning up regularly, and with being so exhausted from the previous struggle to breathe it all felt so much harder. Somewhat amazingly I got through it without having to be taken downstairs, but it was a close call again. It really is horrible. It’s a full day’s run at a sprint, unable to stop for any kind of rest, with no breath or energy to eat to keep you going, and barely able to drink because you’re putting everything you have into breathing quite unsuccessfully and timing the two things so that you don’t choke isn’t easy. Add to this the feeling that you’re trying to breathe through a tiny straw with a pillow stuffed in the end and you get a fraction of an idea of what it’s like.

I made it through. I survived. I fell back into that exhausted and exhausting big sleep and I stayed that way for three or four days, through lighter chest-tightness that the nurses recognised and treated as required, but I was too exhausted to wake up very much for. It’s a strange experience, though it’s not an alien experience for me.

Now I’m mending, with the aminophylline drip down and the oxygen reduced to two litres (I was on 60% so that’s a huge improvement). I’ve been out of bed a few times – the first time only for one exhausting hour, but the next day for four hours, and today I’ll push myself for a lot longer. I need to if I’m to get home, and I’m hoping for that around Tuesday, provided I can get off the oxygen easily enough. This is slightly complicated by the fact that my anaemia has got a significantly worse, with my haemoglobin (Hb) having gone down to 8, which means that my blood doesn’t have the same oxygen-carrying ability that it ought to. It’s also making me feel very light-headed, very tired and generally unwell. However, because my Hb is now so low the docs have had to find some way of treating it, and because there are significant risks with blood transfusions they were reluctant to go in that direction, so they got pharmacy onto the case. One of the pharmacists – Matthew – spent a large part of last Friday investigating iron preparations, including phoning all manufacturers of iron preps. He checked, he double checked, he triple checked and eventually he succeeded in finding one that he was 99.9% sure wouldn’t send me into anaphylaxis and kill me. He brought them to the ward, and the doc gave me my first dose, though he asked for a lesson in using my epi-pen first, which was quite amusing in that he very nearly stabbed himself in the thumb with the pen, despite my giving what I thought were clear instructions. Mind you, he is a bit of chocolate teapot doctor – he’d come in a couple of days previously saying, ‘You know, I don’t think ferrous sulphate has sulphate in it,’ sulphates being one of the things I’m dangerously allergic to. Now I might be wrong, but I’m fairly certain that chemists don’t just pull random names out of a hat when they produce drugs, and I’m guessing that the name ‘ferrous sulphate’ is something of a clue that it contains sulphate. So anyway, after the epi-pen lesson and near-incident I took the first dose of the iron preparation that Matthew had found and I didn’t immediately die – hurray! However, there’s a four hour period of danger between consuming an allergen and it causing an anaphylactic reaction so it was a rather anxious wait for all of us, so I had my epi-pens and call-bell to hand, and each time a nurse went past my room they asked how I was. Thankfully all went smoothly, I’m still alive with no adverse reaction and I’ve had several doses since. This is a huge relief, not only the lack of reaction, but also that the anaemia can now hopefully be sorted and I’ll begin to feel better in that respect soon, although it can take several weeks, even a couple of months, to get the full benefit. At least I might stop passing out/nearly passing out before long, and that would definitely be a good thing.

You know the irony of my admission on 30th October is that this was the date I was supposed to have been doing my sponsored gym marathon to raise money for the Ward 29 – the ward I’m in. I had always put the proviso in that I would only do it on that date if I was able to breathe well enough, which obviously I wasn’t, but I had really hoped that I’d be able to do it when planned. I’m still going to do it, and I’m now planning it for 25th November. I know this isn’t far off and I have to regain strength and fitness in a fairly short period, but I am determined to do this. Nothing I can do, and no amount of money I raise, will ever be a big enough thank you for all the ward does for me and for keeping me alive against the odds. The advantage of having to postpone the gym marathon is that it gives more time to gather more sponsorship, so if you haven’t already and you’d like to please sponsor me/donate through my Just Giving page

Broken

Everything's been a bit broken round here lately, which is partly why I haven't been around for ages, because amongst other things my internet connection decided to die. It's back now (obviously) and so am I ... except that I'm on the cusp of a hospital admission :o( In fact my consultant wanted me in today from clinic, but I couldn't because I was looking after my dad today, so as a temporary measure the Dr H put my prednisolone up to 150mg!!! I'll be going in tomorrow ... provided I don't splat completely in the night. W is on night-watch - bless her, she's wonderful - and will either take me up to the hospital tomorrow or follow me to A&E if I end up there through the night, which I'm hoping I won't. I don't think I will, but I've been wrong before, as we all know.

Actually, before I go up to the hospital tomorrow I have to go to a GP appointment because I've been breaking in ways other than my lungs and my blood results came back today. It's all a bit long to give a blow-by-blow account, but to say that I've been passing out/nearly passing out rather a lot and have had various other random symptoms. After a series of appointments and blood tests it turns out that my anaemia has got worse again and that my ferritin levels are low, although the receptionist didn't tell me how low. Anyway, I have to go for an 'urgent' appointment tomorrow morning, which means that there's a slight risk that the GP will be freaked out by my lack of ability in the breathing department and will want to send me to A&E before I get a chance to get up to Freeman. I'm hoping not, and the fact that my consultant is expecting me to call should help prevent the risk of despatch to the General Hospital where A&E is. Let's hope that the GP trusts me to get myself sorted with my lungs and that she can sort me out with regards the anaemia and low ferritin. The problem, as we discovered before, is that there doesn't seem to be any preparation of iron supplement available that doesn't contain something that I'm not allergic to (are there too many negatives in that sentence for it to make sense?), and the pharmacist suggested that the only solution might be to see if it's possible to have a preparation made up especially for me, but this would cost £70 - £100 a time and so would probably require PCT funding. I suspect that's a long and complicated process, but I can't keep on passing out and collapsing in a heap so something's going to have to be done.

So that's a quick update from a slightly broken person who had a broken internet, but who now has a mended internet and is hoping to get mended herself very soon.

I'll be back soon with more of an update, more info and hopefully more breath.

Cathedrals and the bishops

Sorry for the long absence since my last post. It's been a combination of being busy, some days not feeling 100%, and working on some of the photos I've wanted to put up here. So the next installment of my holiday in Somerset ...

After W and I had been to Wookey Hole we took ourselves to Wells, which is only about 2 miles away. It's a lovely little city, with some very old buildings that look a bit drunken, propping each other up along the edge of the street, but just off the main street (at least the main street that we found) and square are two buildings that are far more stately in their presentation. The first is the Bishop's Palace, which has been home to the various bishops of Bath and Wells of the past 800 years.

This is the moated entrance to the grounds of the Bishop's Palace. You can just see some cygnets on the water, and I read in the palace that the swans on the moat/river learnt many, many years ago to ring a bell that's attached to the wall and be fed by the occupants of the palace. The swans have passed the skill down from generation to generation so that apparently they still ring the bell for food even today, though I have to say that we didn't witness this.

And this is the side view of the palace and one small section of it's lovely gardens. You can see it's proximity to the Cathedral by the Cathedral's tower peeking over the top, but I'll come to that in a mo. The gardens of the Bishop's Palace are lovely, and although it was wet we had an amble around and enjoyed the atmosphere. There were a number of sculptures in the gardens that were part of the Somerset Arts Festival, so we took our time looking at some of them, and there was one that I particularly liked of three swans in flight ...

It's not the clearest photo of them, but it gives an impression. There was something very pleasing about the simple lines and the gleaming metal that reflected the grace that these birds have.

Going back from the palace into the market square, and then almost doubling back on yourself through a little arch way in the corner you follow a path for a short distance and come face to face with this ...

The Cathedral. It's quite an awe-inspiring sight, and you need some time outside it just to take in it's size and splendor. However, as you'd expect in a building of such grandeur on the outside, there are some wonderful sights to take in on the inside too.

This is a detail of some lace work that's at least a few hundred years old, so far as I remember. It's in a small cabinet, in a darkened corner of the bottom end of the cathedral, but I stumbled upon it and thought it was beautiful and amazing. Think of the work that's gone into it, and how amazing it is that it's lasted all these hundreds of years.

The other Cathedral we went to was Bath Abbey. Bath is another beautiful city, though it has perhaps a bit more elegance and grandeur in it's whole demeanour than Wells. The Abbey isn't as awe-inspiring from the outside as Wells Cathedral is, but it's still very fine and far from small ...

And here are some photos of the interior ...

Over and under

My holiday to Somerset is over and I'm back home, but for last week this little cottage was my home.



It has to be said that W and I had a fantastic time away and did a heck of a lot. I had been hoping to blog during the course of the holiday to let you know what we were up to, but we were so busy that I didn't have time, so I'm going to do a series of retrospective posts, starting with our trips to Cheddar Gorge, Cheddar caves, and Wookey Hole. We didn't go to Cheddar and Wookey on the same day, but it seems appropriate to put them in the same post.

The first part of our trip to Cheddar was a bus tour up the road that ran through the middle of the gorge. We'd actually just driven down this road so had seen some of its splendour already, but as I'd been driving and having to negotiate some very tight blind corners it was good to be able to look around freely without risk of causing an accident. Here are a couple of photos of the gorge from the bus tour.

We then made our way to the caves, which are as spectacular as the gorge (even if some of the audio guide is a bit naff and touristy at times) with some amazing stalactites and stalagmites. This first photo from inside the caves is a view up the roof of the cave and it's a huge funnel-like hole that yawns at you from above.

And then you come across a cage of Cheddar cheese ripening in the cave! Although it's not strong, you can smell it as you approach the area.

This one is an amazing cathedral of stalactites dripping down off the wall and must have taken many, many thousands of years to form. Quite stunning.

And this is one of my favourite photos from inside the caves. I love the amazing structures of the stalactites and stalagmites, and also their perfect reflections in the water. I also like the subtle colours and it's wonderland/fantasy world feel.

More stalactites ...

There are two main sets of caves at Cheddar - Gough's Cave and Cox's Cave. I can't clearly remember which of the above photos are taken in which cave, but they are both spectacular ... until suddenly, in Cox's Cave, you are walking down a narrow set of rocky stairs, having seen some wonderful structures of nature, and you come across this ...

It has to be the most rapid change in mood of a place I've come across for a very long time. No longer are you wandering the caves in awe of God's creation and imagination; suddenly you're distracted by a whole Lord of the Rings theme going on. It's quite fun, but it comes upon you so unexpectedly and I burst into fits of laughter the moment I saw the disembodied head with the glowing tiara, initially forgetting that W couldn't see what I was seeing as she was behind me on the stairs. When it came into her line of sight she too burst into laughter, which in turn made the German blokes behind her begin to giggle. The rest of Cox's cave is taken over by the LOTR theme and here are just a few of the photos I took.

At the end of our exploration of the caves, and the weird LOTR experience, we decided that we really ought to try to see the gorge from above. This is no easy task for two brittle asthmatics, one with the added complication of anaemia (me), and the other (W) with the added complication of arthritis, but we're a stubborn and determined pair so we headed off up the steps that take you up the first part of the cliff and then headed on up from there ... slowly ... very slowly ... very, very slowly at times. It was worth it though ...

After our long (and possibly slightly foolish) hike along the gorge walk we had a much easier descent. It was still down a fairly rugged path, but it was downhill and that makes a lot of difference when it comes to breathing :o) We both managed to avoid any breathing crises during the walk though, which I think we deserve medals for :o)

We came out of the woods at the bottom of the gorge walk onto the road and had to amble our way along this to get back to the car near the tourist part of Cheddar - by the caves' entrances and gorge walk steps. It was a longer road walk than I'd anticipated, but it wasn't arduous, the temperature was pleasant enough (it'd been a beautiful, sunny day), and we came across some wild goats that we watched by the roadside for a while.

I really like this next photo of one of the goats ambling its way through the roadside trees. The sunlight just makes it for me.

And just after seeing the wild goats I saw something out of the corner of my eye do a little scurry on the ground to my right. I turned and saw this little chap.

We'd been told by the bus tour guide that there are water voles in the area so at first we thought that maybe this might be one of them (neither W or I are great at wildlife identification), but after a bit of internet research I rather think that this might be a much more common Long-tailed mouse/Wood mouse. Regardless of it's rarity we enjoyed it and it didn't seem to be particularly nervous of us either - it ran around us for ages, played with a leaf that was next to me and scurried over the toes of my walking boots. Eventually it nipped off towards the grass, but not for long and only after we'd been watching it and taking photos of it for a good ten minutes or so. I don't suppose any of you are able to confirm our identification of it as a Long-tailed mouse/Wood mouse, or suggest what else it might have been, are you?

That was about it for our excursion to Cheddar, so next is a little bit on our trip to Wookey Hole, which was actually the following day. Wookey Hole is touristy in a different way to Cheddar - more theme park-y. However, rather than an audio guide that is at times slightly irksome (as is the case at Cheddar), the tour of the caves at Wookey is guided by a person - a man. During the tour he tells the legend of the Wookey Hole Witch and how she is said to have been turned to stone by the incantations of a priest and his splashing her with holy water. The photo below is of the rock that is said to be the witch turned to stone.

The caves at Wookey are enormous and have incredibly deep rivers running through them. Some of the rivers look to be only a couple of feet deep, but this is an illusion given by the clarity and purity of the water and the lack of surface movement as there's no wind. In most places the rivers are actually several meters deep! You can't tell the depth of the river in the photo below, or see the illusion of its shallowness, but you can get some idea of the scale of the place by the rowing boat ... and this wasn't the biggest opening in the caves by any means.

Here is a much bigger cavern. This was taken whilst standing on a bridge that must only have been about a third of the way up the height of the cave. The place seemed to go on forever, and it was difficult to comprehend how deep into the land we must have been.

The caves were amazingly spectacular ... awe-inspiring ... magnificent. And then you step outside and come face to face with this ...

It's a bit of a shock to the system to go from the wonders of nature hidden deep in the Earth to an over-sized, plastic gorilla. Get into the spirit of it and it's okay, but it does feel quite random. However, W and I did get into the spirit of it and I took several more photos of what was to come, and it's very different from the beauty of the caves.

This guy might only be plastic (or something else, but definitely not real), but he's still a bit scary, don't you think? Kind of wonderful in his way ... perhaps ... maybe ...

And then you come across this fellow and his mates. They stare at you from around the gardens, lurking in the bushes, although they have a hard time hiding seeing as they're so big and some of them are painted quite gaudy colours. Still, they're fun and we were there to have fun so we got on with enjoying ourselves and got into the spirit of it.

So that was our jaunt to Cheddar and our trip to Wookey Hole. Both were great fun and we saw some amazing works of nature, which I've tried to give you a flavour of, but it's difficult to do so in such a limited space and only a few photos. For a true impression you really need to go there and experience it, but then I guess that's the case for most things in life.

I'll be back soon with another instalment of our Somerset Sojourn.

We've arrived

W and I have arrived in Somerset after a fairly easy journey yesterday. It was long – about 7 hours all together – but it didn’t seem that long because of the company, although the traffic was pretty heavy most of the way.

The sat nav did a wonderful job of getting us here, except for the last little bit where it took us to the wrong house, but the woman there was friendly, helpful, and directed us to the manor house. Our cottage is attached to the manor house, which has a brook that serves as a moat. It’s very, very lovely here and ever so peaceful. When I woke up this morning I lay in bed for a while listening to the sound of nothing but a crow :o)

The cottage and the manor are both very old, with parts of the manor house dating back to Norman times! Obviously we don’t get to see inside the manor as it’s lived in, but we are right next door (actually, we’re attached to it), and the cottage is full of character – big, old beams, a slopey floor upstairs, a wood-burning stove in a huge, stone fireplace, walls that are 2-3 feet thick, and a twisty little staircase ... which I fell down last night and banged my back really hard. It winded me completely so for a moment I wasn’t able to breathe, and apparently I went completely white, but in the end I was fine; just sore. I feel a bit battered today, but nothing that’s going to spoil my time here.

So today is a lazy day. We’ve had a looooong lie in, and now we’re lounging in the living room. In fact W is still in her pjs even though it’s almost 1:30pm :o) We’re planning on going for a look around Frome sometime this afternoon and then go to one of the local churches this evening. W is a Baptist where as I’m Church of England. It doesn’t really matter as it’s the same God, but the worship is different so what we’re used to is different. We were talking about it last night and trying to decide what to do about going to church – we both wanted to go to a church today – and in the end I came up with a plan: we could go to the Baptist church this evening, but go to evensong at Wells cathedral when we head off there later in the week. Anyway, it’d be crazy to go to Wells cathedral and not go to evensong.

Well, W has gone off to get dressed so I’ll make steps to get ready for going out. It looks like a lovely day out there so we’d better make some use of it.

Catch you later.