Long Weekend

I had been really looking forward to this weekend as it had been planned for about six months. I was supposed to be role-playing with my old friends in Oxford in a game that we have all been part of for years real-time, but then things never quite go to plan do they?

It all began to go a bit pear shaped at around 9am Friday when Bryan called to tell me that Jero had mis-booked his weekend off work and so wasn't going to be able to come. I was a little sceptical about whether this had actually happened or whether he just wanted to spend his weekend off doing something else, but then it is Jero and he is hopeless so it's quite possible, and either way it didn't matter too much as we decided we'd just play without him.

I don't really know where that morning went, I mostly faffed about my room taking extensive amounts of time to get off the Internet whilst scoffing mixed nuts and dried fruit, I then admitted it really was time to get going and that I was probably going to be late for clinic!!

I was of course, I always am, but it was fine, they were so busy it was all running late anyway.

Dietitian review went ok though I'm down to 50kg again, I tried to explain that I had been rather put off doing my feed at night as I had woken up to find the tube strangling Luke, we had a bit of a laugh about that, and then decided that perhaps it would be better to do my feed in the evening or day when I'm just sat about the flat so that it interferes less.

Physio review was ok, nothing to change.Lung function measuring a stunning 40% I try not to find that too depressing but it's hard, I want it to be alot more, even just above 50% would be a nice threshold not to fall below. Surprisingly though my oxygen levels were 96% I was quite proud of that.

Saw the doctor, a lovely chap called Nick who I did some research for once that involved having electrodes up my nose...lovely! In a bid to avoid intravenous antibiotics (IV's) and after some extensive debating about what to do given resistances and the amount of drugs I've already had this year, we decided to plum for a course of a new antibiotic for me, Doxycycline, and a tasty 10mg of Prednisolone to try and calm my asthma down as it's pretty out of control.

Then it was a case of hanging about for bloods, pharmacy and to get my port-a-cath flushed, then off home.

I got the bus and went via Tottenham Court Road to get a case for my i-pod as it was sort of on the way, and it's been annoying me that I don't have one. I also had to get some new headphones as my last ones got ripped out of my ears and broken by some silly woman last weekend in Victoria train station.

By the time I got home and packed it was getting pretty late, and I was pretty tired. Just silly things like having to go around the corner to go to the cash-point seemed unfairly hard my tummy was also starting to hurt.

I did however make it across the stupid underground network of subways that is Marble Arch, and got on the 'tube' out to Oxford.Bryan, Nick and Ailsa all came to pick me up together, and we headed down into Oxford proper to get food, which as any role-player will know is probably the most crucial aspect of any role-play weekend!

By this point my tummy was hurting a hell of a lot, and my lungs were feeling pretty dreadful too, and all I wanted to do was curl up in a heap and cry, not wanting to make a fuss however I just hung quietly on the trolley and shoved things in, in a state of auto-pilot.

I was also feeling a little odd, as it's been ages since I've been around them all, and they were all talking about RPG and games they were playing, and it all just felt a bit alien to me and I felt a bit left out.

When we got home we had a bit of a debate as to what game to play. I studiously, as ever, ignored Bryan and Nick singing the song they wrote during the game that I ran (Willis and Gratch) as I hate running it takes far too much effort and means I have to stay awake. We debated running Magnor without Jero, but all agreed that it would be pointless without him, plus we'd all die really fast as he's our healer. In the end we settled on Nick running his Pern campaign for us, even though it meant we had to roll up new characters.

Ailsa decided to be a dragon rider and has a gold dragon, Bryan I actually have no idea as I got rather more distracted by his naughty greedy pet fire-lizard who was a much more vocal character. I went for a straight forward fighter, quite quiet natured and serious with a big huge hammer for squishing things!

I joined in for a bit, and then my tummy got so bad I had to go an lay down for a bit, and I did intend to go to sleep as that is often a good way of ignoring being in pain. However it just got worse, and I was on the verge of calling an ambulance, when suddenly it lessened off.

I went downstairs again and played a little longer, before finally having to go back to bed to sleep.

The next morning I woke up hoping that it would all be ok, but sadly it was hurting again and I realised I was going to have to go back to London to get some drugs to try and sort it out. I managed to stick it out for the morning and most of the afternoon, but then when we broke off playing to have a barbecue I decided that it was best I head up to London then so I didn't miss any, and I would try and get back as quickly as possible.

The tube ride back to London was very long and very painful. I'm, sure the other passengers must have thought I was having a baby or something given the grimaces I must have been pulling whilst clutching my tummy. When I finally got to London I got a taxi back from Marble Arch, marvelling briefly at the queues outside the newly opened Primark as we drove past.

When I got in I immediately shoved everything I could think would help down my tube, as well as taking as many painkillers as it was safe too in the hope it would work. I had the intention of letting the drugs kick in before heading back to Oxford, but it quickly became apparent that things were not getting better, and that as my body had been straining and in pain for the best part of 24 hours it was now pretty much exhausted.

Everything then seemed to spiral quite quickly.

I called one of my flatmates to see if she was in, as she knows how bad my tummy can hurt, but she was going out, so I didn't want to make a big fuss as I was still convincing myself at this point it was going to be ok.

I called Luke to let him know what was going on as he was down in Sussex, I told him it was probably all going to be fine.

It then hit me this really wasn't going to be fine at all, and that I needed an ambulance, and probably a surgeon and that I really should have admitted that quite some time ago.

I called the university as we aren't supposed to call an ambulance without asking, which seems very bizarre to me, and they weren't very helpful and didn't offer to send a first-aider which I thought was a bit shit, not that they could have done anything but that isn't really the point. I then called the ambulance and they told me they were on their way.

I then called Alex another one of my flatmates as he's quite sensible and I knew it wouldn't freak him out too much to suddenly be faced with me screaming in pain and getting bundled into an ambulance and having to face surgeons...which is what was going to clearly happen. I asked him if he was in and he wasn't, he asked why and I was going to say 'oh nothing' because I didn't want him to worry as he wasn't here. but I just kinda of cracked at that point and told him what was going on. He was, as I predicted, terribly sensible about it, and told me to call Rabia who was in, and that he would meet me at the hospital.

Rabia and Karolina came rushing down and did their best to look after me as we waited for the ambulance which in the end took nearly an hour to reach me in central London. I probably got over-worked up and made myself worse but by that point I was tired and scared and in a lot of pain and they should not have taken so bloody long to get there. I also got beyond the point of being able to talk to Luke because I was in too much pain, so Karolina had to speak to him and let him know what was going on. I felt awful for scaring him so much, but it was reassuring to know that no matter how long it took he was on his way.

The ambulance crew when they arrived were lovely, and apologised for taking so long. It was odd but I suppose understandable that I calmed down when they got here. I seem to have this mode of being helpful, cheerful and highly knowledgeable about my condition around medical staff that kicks in almost without fail, and the less they know about me the more I behave like that. It is probably a little mis-leading as to how I am actually feeling but never mind it seems to work.

They rushed me down to UCH and into A&E where they did their best to pull strings for me and get me into a bed rather than a corridor, aswell as getting a surgeon down to see me as quickly as possible. While we were still waiting Alex arrived. I felt a bit bad as he and Rabia have had a rather bad 'falling-out' and I didn't like being responsible for shoving them back in a room together, but figured they were both grown-up enough to deal with it. I also got Rabia to phone Bryan and tell him what was going on and that I wouldn't be back, very sweetly he told her that if they needed to speak to someone who knew my medical history that they could call him.

It was then a case of being put in a room, given an utterly pointless dose of paracetamol, and re-counting the freaking bloody obvious about three hundred times to various nurses, doctors and surgeons none of which had a clue what was really wrong with me or how to deal with it, even though I kept telling them!

The guys were all utterly fantastic and kept me talking so I didn't notice how much it was hurting, and so I didn't have time to brood over the possibility that I was going to need surgery which would probably kill me.

After a few hours of faffing about with nothing being done they finally decided it might be a good idea to give me some pain-killers and anti-sickness drugs, however it did involve the nurse having to throw away one batch of drugs that I'd already told them I was allergic to!

Everything after that goes rather soft focused and I don't really remember it as the drugs were pretty strong. I did tell them that I'd stop breathing enough when they gave it to me, yet still there seemed to be some surprise over that fact that my oxygen levels plummeted, blissfully though I didn't actually care about any of it any more as I was away with the fairies.

A few hours later I semi-came round and the surgeon asked me all the same questions again, even though most of the answers were written on a sheet for him that I prepared ages ago so that I didn't have to go through complex medical history whilst off my head on opiates, but never mind. Luke was in the building now anyway I could feel him.

It was no surprise at all when he appeared at the end of my bed, though it was very nice to see him again.He was glowing of course.

Then I was on the ward, and being sick, actually properly sick out of my stomach which I haven't done for a very long time, so that was quite exciting. Luke was sleeping next to me in the chair. When I stopped being sick he went home, but I kept waking up and seeing his echo there for hours afterwards.

Just as dawn was starting to break another doctor came to see me, she was worried about my chest and wanted to put me on IV's. I explained that wouldn't be necessary, but suggested she should call the Brompton anyway and ask what my sensitivities were. I also suggested that she ask how they would recommend dealing with a blockage. She ignored the latter of course, but happily announced I was sensitive to colomycin, which I could have told her anyway.

The next day Luke came with is friend Will, who had come to keep him calm on the mad train journey the night before. I didn't really have much to say, and was still feeling pretty trashy from the drugs, and like I'd been kicked a few times in the stomach.

Later I got moved into a side room which was nice and big and quiet. It was also nice to see they were being sensible about me and the 'infection risk' I pose!

All the gang came to see me, they were all a little shy at first and didn't seem to know what to say, but after a while it was ok, and we chatted normally.

That evening I watched 'Lost in Translation' it was pretty good, and I've wanted to see it for some time. It made me a little sad though, partly because Japan looks so cool and weird and I want to go there, and this latest episode was just more damming proof that I just can't do that sort of thing any more. More though because of the subject matter, it made me think of my sister and her friend a lot. Two people coming together and then never being able to follow it all through because it's just not possible because of all the other circumstances - it is a horribly sad thing to live or to watch.

I then watched 'A Clockwork Orange' because it's one of those films I felt I really ought to have seen, besides which I wasn't really sleepy and it was the only thing on. On reflection it probably wasn't the greatest film to be watching late at night whilst in an odd mood with lots of opiates and steroids in my system, but never mind...sex and violence always makes me think of Nick and having been convinced I was about to die again the night before it was kind of obvious that I would be thinking about him anyway, it made me text him though which was a good things as I probably should have done earlier.

After that I went to sleep.

The next morning I woke up to find my tube had disconnected in the night, so that the contents of my stomach had free-drained onto the bed, rather than into the bag, not very pleasant at all as it mostly consisted of cold wet sputum. In a very unimpressed and quite feral state I had retreated to the back corner of the room to watch the last of the sunrise and debate at what point I should sign myself out. The fact the surgeon couldn't be bothered to come in the room as it would have involved putting on a plastic apron did very little to improve my mood, though I was at least now allowed to drink...tea please!

As the day progressed I brightened up a little and by the time my flatmate Chitzi came to see me I was feeling decidedly perky. She stayed for ages and we chatted about tons of stuff so that was really nice.

In the afternoon Luke, Will and Abdul popped in. They very sweetly bought me some magazines to keep me occupied. They had been trying to fix Will's laptop and though they hadn't had much success it appeared they'd had fun trying!

That night was pretty long and awful. For some reason I suddenly started feeling very cold and shaky, given the IV fluids and my history I immediately assumed there was something wrong either with my blood pressure or my sugar levels, the latter being quite concerning as I was not in the mood to fall into some sort of hypo-glycemic coma through sheer stupidity.

I called the nurse and asked if she could do a set of ob's and get me a blanket, she said ok, and went off. I sat waiting quickly getting more cold and shakey whilst also starting to feel very sick, to the point I started retching. I called for the nurse again, getting quite concerned at this point that there was something really wrong. About fifteen minutes had gone by at this point, and I could hear them outside chatting at the nurses station, which really annoyed me as i was quite concerned. I was also frustrated that no one had been keeping much of an eye on my sugar levels even though I had repeatedly asked them too, and they had already dropped low on one occasion in the last 24 hours.

She eventually came back in to find me retching and shaking with cold, and rather than being 'oh my god what's wrong, let's do some obs' she started shouting at me saying 'why are you hyperventilating' to which I tried to explain I wasn't whilst shivering, retching, and being quite worried, and that I was jut really cold and could she please do my ob's because I was worried about my sugars and bp.

She then started shouting at me to get under the blankets and that was why I was cold, I was trying to but it was kind of hard whilst shaking, puking and being shouted at, whilst also trying to explain that I doubted I would suddenly get cold for no reason and that I thought there was something really wrong. She then started going that I knew I had to keep myself warm and that it was part of my condition, to which I was thinking 'It's got nothing to do with my condition' and 'you don't know the first thing about my condition'.

I am also notoriously bad at being told off, and it really upsets me, especially when I try so hard to be especially helpful and patient when I'm around people who don't know how to look after me. For instance even though the ambulance crew took an hour to reach me I never complained to them once. But she just kept shouting and I didn't know what to do, so in the end giving up on being polite I was just like 'what the fuck, why are you shouting at me?' to which she shouted back even louder 'do you talk to me like that' in a way that implied I'd called her a bad name or something. Eventually thankfully she left and a few minutes later another nurse came in and did my ob's.

I couldn't even look at her, I just sat there crying my eyes out.

I was so upset, and so so shocked, i just couldn't understand why she was shouting at me when I hadn't done anything wrong and was just asking for help.

I called Luke because I didn't know what else to do and I wanted to hear his voice to calm me down. He was really sweet and wanted to come down, even though it was too late at night and they wouldn't have let him in. Mostly though i just felt bad for calling him when there was nothing he could do for the second time in as many days, so it didn't actually help that much.

I sat there for a long time debating whether to just sign myself out as they didn't actually have a fucking clue what they were doing anyway, and they weren't giving me the drugs I wanted because they don't understand how CF-related intestine blockages work, yet refuse to listen to my perfectly competent explanation of them, and how to deal with them.

I also did not want to be in the same building as that nurse, or in a place that would have staff that would treat their vulnerable patients in that fashion.

However I just kept saying to myself 'reflect' in true PPD fashion. I was trying to figure out why I was reacting so strongly and what the best course of action would actually be, irrelevant of what I felt like doing. I had to bear in mind that this hospital, are when I'm going to come in emergencies irrelevant of whether they know what to do or not, ambulances cannot go to the Brompton, so it would probably be best not alienate them and piss them all off. Storming out of hospital at eleven o'clock at night just because you had a row with an unprofessional nurse is also just a bit immature. I also had to admit that I was probably over-reacting because I was over-tired and it had been too many days of pain and scariness.

However I didn't really feel any better for having come to such an enlightened point of view and so I called my friend Dan, who is the only real world person I know with CF. He is also probably the only person I can call at midnight in tears crying about CF and have them have a hope of understanding what I mean. I always do it, and he always there. Truly awesome friend, I love him very much.

I guess this was just the first time I've really had this acute scary situation happen now I'm totally independent. The first time it happened I was with Bryan, the second I was with my mum, but this time I had to make all the decisions, and there wasn't really anyone around who knew how to help. Thats a very scary level of responsibility that it could only hit me I now have in that sort of moment.

I really don't know how I do this sometimes, and I have to pretend I can so that everyone else doesn't worry too much. I wish I didn't crack under all the strain but every so often I do. That was utterly one of those moments.

Kind of hurtful and upsetting that the people I want then aren't the ones close to me like Luke, who it feels like it should be, but I want other people who are further away, who I'm less scared of hurting.

The next day I decided I was leaving, and convinced the surgeon with very little difficulty that he had no idea what he was doing and that it was best to let me tootle off the the Brompton in such a fashion that he was convinced he came up with the idea. I also got to eat something which was a relief after days of nothing.

I called Luke to ask him to help me come home as I had a heavy bag, and I didn't think the hospital would let me go unless it was with someone. He arrived in a vile mood, still mostly asleep and puffed up to the eye-balls with hay-fever and I got the distinct impression I'd annoyed him. Then I had strict words with myself to be more grateful and to just be relieved to be going home.

Yay - survived it all again.

Ignore the bright edges, busy roads and high buildings.