Stability

Eight days after entering ITU I was recovered enough and stable enough to be moved to a ward, my usual ward at Freeman Hospital. I'd managed to wean down the BiPAP a fair bit, although I did still need it at night and for some periods in the day. I still had some abdominal pain, despite the appendicitis having been treated, and the surgeons were still wanting to do an investigative laparoscopy because scans had come back clear. They were still 'discussing' this option as I left the unit and their hospital, but I'm thankful to say that the medical doctors weren't going to risk putting me under an anaesthetic for anything at that time.

The ambulance trip between the hospitals was very uncomfortable, mostly because by this time I was terribly water-logged due to the right-sided heart failure. I'd been on a fluid balance chart (measuring how much fluid I take in and how much I pee out), so we knew that during each day of my admission I'd retained between 500 - 750 ml fluid. That's a lot! After 8 days that's somewhere around 6 litres! It felt like it. My torso, thighs, hips, and waste were incredibly swollen, even my arms were pudding-like. In fact the only part of my that wasn't blown up like a baloon was the lower half of my legs that had surgical stockings squeezing the fluid upwards. My skin was stretched to splitting point, and it felt as though it would tear if I moved and caught it on the bed sheet, so bumping around in the back if an ambulance was truly excrutiating, let alone with the additional mystery abdominal pain.

We arrived on the ward at long last, and I shuffled my pained, exhausted, and weary self into the bed. Not quite as delectably comfortable as the moving airbed mattress I'd had in ITU, but comfy enough, and more importantly I was with my usual care team - almost my friends; almost my second family.

I couldn't sleep. I've had a huge amount of stress recently, and the trauma of all that had immediately prior to, and during, the admission so far was filling my mind. But eventually I dozed, though only for three-quarters of an hour,  when I woke once again unable to breathe. I had nebs, and more nebs, and the doctor was called. She did blood gases, which weren't utterly dreadful, but they were far from good, so the BiPAP pressures were increased again, having only just begun to drop them a smidgeon earlier in the day. I wasn't quite back to square one, but I wasn't that far from it either, with my potassium levels destabilising again and my infection markers rising. I was back on BiPAP full time, unsure again if I was going to survive. I didn't know if I had the physical energy or mental strength to get through, to live, and part of me was questioning the futility of it - why fight to survive this when it will only strike again in the future if I do. Part of me did give up, maybe even died. My only option was to ask my friends to pray, and leave It for God to decide. I don't know why God makes the decisions He does, or how He got me through it, be He did in the end, and I'm still in the world. It's more than I expected.

Nearly four weeks since I was admitted and I'm still in hospital. Although the Freeman ITU Outreach Team were assessing me several times a day,  everyday, for about a week after my transfer, I've managed to stay on my usual ward, the only change being that soon after I arrived I was moved to a room right next to the nurses' station where they could more easily keep a very close eye on me. I've been off BiPAP now, after a slow wean, for a week I think, but then there was the reduction in aminophylline to get through, and with the fluid retention and heart failure, this was becoming a pressing concern. We know from experience that I have to do a very slow wean off the aminophylline or my lungs go off again and I'm back at the beginning. We had to take a risk this time, and although it was still slow in comparison to most, we had to go more quickly than we usually would. The sooner they could stop any extra fluids the better for my heart,  which still isn't it great shape. I'm told it could take some months for my heart to recover, even if/when the fluid reduces, and that this time is somewhat dependent on how well behaved or otherwise my lungs are during that period. Certainly this time I've been knocked well of course,  though that's not surprising given the complexity of the admission and the many complications along the way. I am incredibly weak, can barely walk at all, although last night I did begin to insist that I have help to walk through to the en suite toilet instead of using a commode. Regaining toilet rights is always a big step along the road to recovery, physically and emotionally. Everyday I have a short session with the physios, with one of them supporting me and the other following behind with a chair for when I'm about to pass out with the effort. I don't feel like I'm making much progress, if I'm honest, and I get really frustrated, but the physio tries to be encouraging and she keeps reminding me how poorly I've been. Part of my reclaiming of toilet rights is self-imposed physio, because I know that while it's really hard work and I'm pushing myself hard, it's only by doing the work that I'm going to get stronger.

The mystery of the abdominal pain in addition to that from the appendicitis still hasn't been solved. It's still very much there, being painful at a score of 5 or 6 out of 10, despite copious pain killers. There was a snuffle of excitement when I contracted another UTI because they thought that could be the cause, but the antibiotics did their thing, the infection was cleared, and the pain has remained. At the end of last week the consult suddenly decided that I should have an xray of my spine to check that I haven't developed a crushed vertebrae from the long-term high-dose steroids. He thought the pain could be referred to my abdomen by nerves, but the xray has shown that this is unlikely,  because while it does show some wear and tear of my spine, they've decided it's not yet signigicant or something to worry about (though personally, it doesn't fill me with joy to know my spine is worn and torn). Next up, I'm told, is the gynaecologist,  not that they have any specific concerns they want investigating,  but rather just to cover all bases. I've almost given up on finding an answer, and I'm very much feeling like a lab rat undergoing test after test after test. The consultant says he tries to he reassured by the clear scans and xrays, etc, but actually he is a bit concerned. He wants, if possible,  and for as long as possible, to 'keep things non-invasive', but says that it might in end up with investigative surgery. Maybe I'll see if it settles itself. Maybe I've had enough of being prodded and poked and tested and scanned. Yes, I most definitely want to be pain-free, but there aren't any guarantees that investigative surgery would find anything or fix anything, so then what?

Now I'm tired - physically drained and emotionally exhausted. I have a lot of pressing on-going matters and situations to deal with, and then there's the fall-out from having been so poorly for so long and with so many aspects to it. I was struggling with depression before this admission began, as you know, and the unexpected and atypical nature of it has compounded that. What I really want now is to get well enough to go home; cuddle the cat who I'm missing dreadfully; perhaps take the cat with me for a few days at my mum's; and go on holiday as planned at the end of the month. I want to recuperate, regenerate,  spend time with friends and family. I said to my psychologist on the phone the other day that I feel like I've lost myself somewhere - with all that's happened and still happening, I've left myself behind and I don't know where. I'd like to find where I am, go meet myself, and bring myself back to somewhere familiar. Good familiar. I can't do that while I'm still on hospital, so I need to get home as soon as is realistically possible, but as yet I still don't have a date for discharge.

Allsorts

Oh dear, yet again I seem to be apologising for the lengthy gap between posts.  I truly am sorry.  Life has been busy lately, but things have now slowed down again for a while.

So one of the things that's limited my posting has been on-going problems with my left hand.  I've told you in previous posts how I had carpal tunnel syndrome surgery back in May, and how I've developed some complications post-surgery.  I'm still seeing the physio every week and things are improving a little bit, very very slowly, but no major positive change.  I've been doing the massage I have to do, and the exercises, but it's difficult to motivate myself to do this as it's painful and can instigate more on-going pain, tingling, and stiffness.  The physio says it's a matter of getting a balance of doing enough to stimulate healing, but not enough to aggravate things.  For the past 3 weeks I've had to wear a sling most of the time because my hand swelled up causing further pressure on the ulnar nerve and worsening symptoms.  I saw the surgeon again today who said that I should now use the sling as little as possible as the nerves all along the length of the arm need to be stimulated.  He said that it will hurt, but I should try to work through the pain as much as possible.  The physio then said that I should rest my hand in the sling intermittently and not work my hand so hard that the pain gets too much.

When things suddenly got worse with my hand three weeks ago I saw the physio as an emergency and she got one of the doctors to have a look.  The doctor then decided that I needed some nerve specific pain killers, but asked for my GP to prescribe the meds because of the complexity of prescribing for me around my allergies.  So I saw my GP and was prescribed gabapentin, which is actually an anti-convulsive medication, as are most nerve-specific pain meds.

At first, all was going okay with the gabapentin, but very quickly I was feeling nauseous most of the time.  My GP was reluctant to increase the dose whilst I was so nauseous and lacking in appetite, so I was waiting for those side effects to ease off before having the doc put the dose up.  However, once the nausea eventually began to settle I noticed that I was also feeling tearful and my mood generally was a little low.  I was becoming a bit hyper-sensitive and letting things get to me that usually wouldn't cause much more than a slight annoyance.  I read up a bit on gabapentin and found that depression can be a side effect, and as I know that I can't afford to go back down that route after such severe depression in previous times, I went back to the GP.  I saw her yesterday and she's switched me onto pregabalin.  I'm only on a low dose at the moment, and today the pain has been more bothersome (although that could be from the prodding and poking by the surgeon), but I have to have a phone consultation with the GP on Friday when they might increase the dose.

Whilst all this has been going on I've been trying to write stuff for my MA.  I managed to get my module submissions done on time, and even a few days early.  It wasn't easy doing it all with one hand, that's for sure.  Then, of course, I had a fair bit of work to do for my portfolio.  I had to get some done for my supervisor.  I had it in my head it that I had to get work to my supervisor by 14th for our meeting on 21st, but it turned out that our meeting was on 14th and I should have got work to her by 7th.  I only realised this on 12th, so of course, I didn't get it written on time or sent on time.  Thankfully my supervisor is very understanding and although she's not in Newcastle this week so can't meet up, she's going to do this supervision by email.  Thank you, V.

So then there's the car, or rather cars.  Somebody bumped into my current car, MacTavish, and smashed the wing mirror.  The whole thing was twisted sideways and the mirror was wobbling on its post.  Thankfully it was only the wing mirror that was damaged, but it was still extremely frustrating as whoever did it didn't leave a note with any contact details or insurance details.  I haven't been able to drive recently because of all the problems with my hand, so I don't know exactly when the damage to the car happened, but when I did notice then I contacted Motability Insurance.  They've been great.  They sorted out getting it fixed and had the mobile service sent out to me.  They came today and it's all mended, and I'm £75 worse off because of the excess :o(

There was a bit of a rush to get MacTavish mended because I'm getting my new car next week.  I'm actually going on holiday up into Northumberland at the weekend and will be away for a week, but the company I'm getting the new car from are bringing it up to me on holiday.  How great is that?!  I've still got rather mixed feelings about having to get this new car (which still needs a name), but I am getting excited now.  I'm focusing on the positives and know how liberating it's going to be to have a car I can get Taz into.

That's probably enough to be getting on with, but I will endeavour to post again very soon.  I promise.

In hand

Slowly, ever so slowly, I'm getting through my work.  I have now submitted two of the pieces of work for my MA and only have 1000 words left to do of the third submission.  Of course, I then have 15000 words of portfolio/dissertation to write, but that's not due in until the end of August so there's plenty of time left to worry about that get that done ;oP

Things have been somewhat slowed by a complication arising from the carpal tunnel surgery I had in March.  One side of my hand has swollen, is incredibly tender, and is causing horrible pain in two of my fingers and some of my arm.  I've been seeing the physio at the hospital for several weeks because I've had reduced mobility at my wrist, and hypersensitivity at the site of the scar, so when things got a whole lot worse at the beginning of last week I called the physio department for advice.  The physio told me to see my GP that day and also made an emergency appointment to see her the following day.  Amazingly, I actually managed to get an appointment with the GP - amazing because it was almost midday when I rang and usually all appointments have been taken ten minutes after the phone lines open at 8.30am.  So I got to see the GP, but it was a trainee, who was very nice, but didn't have much idea what the problem was or what to suggest, other than increasing my diuretics to try to reduce the swelling.

I saw the physio the following day - Wednesday.  She also didn't know why my hand has swollen, but she thought the swelling was causing compression of the ulna nerve.  Rather than seeing me in the rehab department where she usually sees me, she had told me to see her in the hand clinic in case she thought I should see a doctor.  She did, and she grabbed one (I presume not literally, but I didn't follow her into the corridor to see), and the doc agreed with the physio's diagnosis as there was no evidence of infection.  They decided that my appointment with the surgeon should probably be brought forward, and that came through the post two days later for 19th June.  They also decided that for now I ought to use my hand as little as possible (easily done, because it's far too painful to use much anyway), have it elevated in a sling, and have some nerve-specific pain killers.

The hospital doctor had two pain killers in mind, gabapentin and amyltriptyline, but didn't have time to check through all the ingredients to see if either contain anything I'm allergic to, so instead said I should contact my GP.  I phoned the GP as soon as I got home, explained the situation to the receptionist I spoke to, giving the name and contact number of the physio in case the doctor wanted to speak to them.  Anyway, after the doc had finished surgery she called me back, but hadn't been able to speak to the physio so I explained it all again to her.  She was lovely (as ever), and checked both drugs for potential allergens.  As it turns out, I can't have amyltriptyline because it's in the same classification as a medication that I had an anaphylactic to several years ago.  However, gabapentin seemed okay so she prescribed that and faxed it over to the pharmacy for me to collect as the surgery was about to close.

Gabapentin does seem to work, but it also makes me feel very nauseous, so I'm trying to cope with the pain  some of the time.  I say this very tentatively, but I think it might be a little bit better anyway, and I think the swelling might have gone down a bit too.  I hope so because the doctor at the hospital said that nerve compression can cause long-lasting muscle weakness, which itself can cause the hand to wither and permanent loss of function.  There are some things you just don't need to hear!

I have to go back to the physio on Wednesday morning so we'll see what she thinks then.  I'm hoping that I will at least be able to take the sling off when I've seen her.  It makes life tricky, and isn't helping me get my work done.

Okey dokey, I'm off to bed now, but hopefully I'll have got the last of my MA coursework out of the way in the next few days and will be able to tell you all so when I next blog, which I promise will be a lot sooner than the time between this post and the previous one.

Full of busy

Since I got back from Edinburgh I've had a very busy time, which is why I haven't been around on here, but I promise I will try to make time for blogging again.

Last week was my first week back at university after the Easter holidays, and this term I have three modules for my MA running concurrently.  Two of them only have a few weeks left, but they both then have assignments that need to be written.  One of these modules has two pieces of work, but the first is only a short piece of 750 words - a review of an event - and I've done that already.  However, I do need to seriously start working on the longer essay.  I do have a bit of time till it's due in - 6th June - so I'm trying not to get stressed out about it.  The problem is, though, that I can never be sure when I'm going to end up back in hospital, so I can't rely on having all the time until the essay's due in to actually write it.  Alongside that, there're are also the other two modules, and whilst I've done the first draft (and a couple of redrafts) of the piece I'm doing for the novel writing workshop module, there's still a bit to do for it, and there's the entire piece for the Writing for Children module.  I've only just started that module and as yet have only a very basic idea of what I'm going to do for it. I'm looking forward to getting stuck in to it, but it's going to be a challenge, I know that for sure.  The assignment for Writing for Children is due in on 11th June, so you can see that I have a lot to do at the moment.

So I had three classes last week, and each class is two hours.  That might not sound like much, but it's hard work when you're doing it alongside life with POTS and chronic severe brittle asthma, and although I find that writing and studying sustains me, the effort of going to classes can be exhausting.  Overall, it's a great thing, which is why I keep on doing it, but it also means that I'm constantly battling with the conflict of wanting and needing to study/go out, and wanting and needing to rest.  Last week was a week when I couldn't do as much resting as I needed, and consequently I spent a lot of the weekend recovering.

Aside from study, last week, I also had my assessment appointment with the health psychologist.  I was nervous because I didn't want it to end up with the same outcome as when I saw the psychologist at the difficult asthma clinic.  As I've said previously, that concluded with the psychologist giving me a verbal pat on the back for having come so far since I saw a psychologist in the department years ago, and then basically being sent on my way.  This time I needed the psychologist to understand that what I'm dealing with now is a whole lot of different things from what I was dealing with nine years ago.  I needed to get across that the issues I need help with at the moment are issues about now, issues to do with my health and how the lack of health is impacting on my life, the upset of that, and the difficulties of adapting to ever shifting boundaries of limitation that my health is imposing.

The psychologist I saw wasn't someone I recognised, but then it is nine years since I was last going to the department regularly so it's not surprising that some staff have changed.  However, as I've taken part in extensive therapy before I wasn't afraid of actually talking to the psychologist, and found that I was quite easily able to open up and talk to her freely.  I have to admit that I was very surprised at how emotional I got when I was talking to her.  Most of the time I try just to get on with my situation and my life, making the most of what I have, but having the opportunity to talk to someone impartial about all the upsetting things made me very tearful.

One of the things I want to have the chance to talk about is the loss of my hopes and dreams.  I had many.  I've lost most of them.  I've made new dreams and have different hopes, but they don't stop me from grieving the loss of those that I had, and those are things that I need to be able to share and come to terms with.

It was a productive appointment.  As far as a psychology appointment can be good, it was, and I really felt that psychologist I saw got a handle on the issues I'm dealing with and understood their far-reaching consequences.  All through the appointment, though, I was wondering if I was touching all these sensitive issues only to have the psychologist turn around to me at the end and say that she couldn't help.  However, much to my relief, she said that she thought the referral was completely appropriate and that she did think the department would be able to offer me some input.  It may not be with her, but if it was to be with one of her colleagues then she'd pass on everything I'd told her (she took notes while we talked), and it'd only be with her colleague if it was going to be quicker for me to start with them than with her.  Unfortunately all that can be offered is six to ten session, but she assured me that should I need more from them in the future then my GP could re-refer me.  It's a shame that there isn't any on-going support these days like there used to be, but this is a lot better than nothing and hopefully it'll give me a bit more emotional strength to deal with what I have to.

Now the other thing that I did last week, that is totally different from any of the other stuff, is that I had a birthday :o)  I have lived another year beyond my life expectancy, although it's been a challenge to get through at times, as you know.  My birthday was on Thursday, so a university day, and a full one at that with two classes - one in the morning and one in the early evening.  I took a cake into my first class of the day and shared it with everyone, which made it all very jolly, and everyone's papers very chocolatey ;oP  Between classes I met with W and we went to the cinema to see 'The Pirates: In an Adventure with Scientists'.  It was great fun, light-hearted, and just what was needed for an afternoon film showing on my birthday.

On the Friday evening I went to Gibside.  This is a National Trust property on the edge of Gateshead and County Durham.  It's a lovely place, and somewhere I enjoy going whatever the weather, which is just as well because the last couple of times I've visited it's either been snowing or raining.  It was raining on Friday, but it didn't matter.  Every Friday between 6pm and 9pm they keep the walled garden open while the rest of the grounds are closed, and in an area next to the walled garden they have picnic tables and log burning braziers in a beer garden.  They serve beers from a local brewery, Fentimans soft drinks (also made locally), cakes, snacks, and ice-creams.  They're all sold from a little hut, which unfortunately isn't directly wheelchair accessible, but when they saw that I was sitting out in the rain they came and said that if I wanted to go inside they'd open up the main shop as there's a way through that to the rest of the hut.  As it was I was fine because we were sitting under a huge picnic table parasol, and not far from one of the braziers so it wasn't too chilly.  The rain also eased off a fair bit while we were there and at one point we had a gorgeous double rainbow.  I'd post a photo of the rainbows except that I haven't actually downloaded them onto my computer yet.

I'd invited a fair few people to join me at Gibside, but I left it a bit late to ask, and actually a lot of folk were away at various different places.  However, several people were able to come and I think all had a good time.  I know I did :o)  I don't think any of those who came had been to the Gibside beer garden before, but I think it is somewhere we might all end up again, though perhaps on a slightly less soggy evening.

As I mentioned before, I didn't do a huge amount at the weekend as I was recovering from the busy week I'd had.  This week has so far seen me back at university, doing some of the homework I've had from university (I still have some to do), an appointment with the physiotherapist at the hand clinic, two trips to the dentist as I had a filling fall out on Friday afternoon, and a quick visit to ward 29 for a portacath flush.  Not exactly a relaxing or fun-filled time, but all necessary.  I still have another two classes at university to go, more homework before tomorrow afternoon's class, and a follow-up appointment with the surgeon at the hand clinic.  Thankfully, I have a nice day with W planned for Saturday, so that will redress the balance somewhat :o)

Right then, I'd better get myself to bed or I'll never manage to get myself up in the morning in time for my class, which this week is an hour earlier than usual as the tutor has to go and host an event at the Hexham Book Festival in the early afternoon.  I wish her luck, but I so wish I could have that extra hour in bed ;o)

Pausing for breath

Last week was a bit manic and mainly with health related appointments. Monday's was with the disabilities advisor at Newcastle University's Student Welfare, during which we went through what needs I may have while I'm studying with them. It was very useful, but obviously concentrated on how decrepit I am so I came out feeling a bit pleugh, although I did also feel positive about how they're going to manage things. One of the most ridiculous things the DA is having to sort out is for staff to get permission to use my Epi-Pen on me if the need should arise. At the moment they're not allowed to in case I sue them for assault! Crackers! The DA is going to speak to Occupational Health and also the Health and Safety Officer, who apparently is the only person currently allowed to use my Epi-Pen on me, but that's no good if he's not immediately around because if I need someone else to administer the adrenaline then I need it there and then. Various other things are going to be put in place too, including a note-taker to attend my lectures when I'm in hospital. Brill. There'll likely be bits of equipment I'll be getting too, either through the university or through the Disabled Students Allowance, which I've eventually got around to applying for after all these years of study.

Tuesday's appointment was relatively brief and was with the optician. I'd been told after my cataract operation that I had to go to my regular optician for a sight test and check-up two days before my check-up with the ophthalmologist. It seems a bit daft to me seeing as they do a basic sight test at the ophthalmology department when you go for your appointment, but I was good and went to the optician. The verdict is that my general sight in my right eye has improved a little since the cataract was removed, but my reading sight is a little worse. I could've told them that myself ;o) I have to go back for another sight test and new glasses after my second op.

My psychiatrist was supposed to come on Wednesday morning - 8.30. Ug - but twenty minutes after she was due here she rang me to say that the centre had been crazy all week so she'd had to go straight there. Somewhat ironic that she should describe a mental health centre as 'crazy' ;oP It made me smile anyway. After apologising for not being able to make it she said, 'I have a confession to make,' which made me a little nervous until she continued, 'I was watching telly the other day and I saw you. I shouted, "That's Becky! That's Becky!"' Tee hee :o) After that we had a relatively short telephone consultation, which went okay and was really just a quick monitoring and my conveyance of a self-assessment of how I am. I'm doing okay emotionally - certainly better than the last time I saw her :o)

On Wednesday afternoon I had an appointment with the physio at Freeman Hospital - a pre-pulmonary rehab assessment. This mainly consisted of going through a questionnaire I'd had to fill in before the appointment and going through another questionnaire the physio had there that concentrated on exercise tolerance, perception of health, and my goals for the pulmonary rehab. We obviously also discussed their concerns about my passing out and how they/I will manage them during rehab. Then I had to do a 6 minute walk test to see what happened to my oxygen saturations and my pulse rate. Predictably, my O2 dropped (but only a little) and my pulse rate went up, and of course I staggered around a fair bit, frequently using the wall for support, as walking in a straight line for anything more than a few steps (and sometimes not even that much) doesn't happen with me these days. The verdict is that I'm decrepit enough to warrant being on pulmonary rehab and not so awfully decrepit (at this moment in time) that I'm excluded from taking part :oD I start on Thursday next week.

Most of Thursday afternoon was taken up with the ophthalmology appointment I mentioned before. I was running a little late through the day after a bit of a rubbish night and I was worried that I might be late for my appointment, but honestly it's their time-keeping that needs putting in check, not mine. Like last time, I was there for three hours! Three hours! Three hours for a five minute sight set and a five minute consult with the doctor. At least I got a date for my second cataract removal op - 13th October. I was hoping that I'd get something before that, but as it's the consultant doing the op that's the earliest they had, but said they'd give me a call if they got a cancellation.

Friday morning was taken up with a 'Continuing Care' assessment by Social Services, which took about an hour and a half and again meant concentrating on how utterly rubbish my health is. The point of it is to assess my level of care needs that are medical based, rather than socially based, and therefore how much, if any, the Primary Care Trust (PCT) will pay towards it. To be honest I'm not completely sure how this may effect me. I mean, I don't know if it effects how much I have to pay towards my care or if it's purely to see if I pay the PCT or Social Services ... or some other variation of this. All I really know is that it's something to do with payment, and that going through the assessment made me feel pretty lousy about my health and general state of well-being :o( And to top off the day (and the week) I had a dentist appointment. It was just a check-up, but going to the dentist is never fun. I haven't actually been to the dentist since June last year when he accidentally instigated anaphylaxis by smearing something with a tiny amount of banana derivative in it on my teeth. As soon as the dentist saw me in the waiting room he came and sat beside me and said he was about to go into the room and clean everything thoroughly before I went in and he wasn't going to wear latex gloves, even though I'm not (yet) allergic to latex. When I went in he said, 'I'll have a look, but I'll probably just need to do a scale and polish and I'll get the hygienist to do that.' I got the impression he was slightly nervous ;oP He must have spent all of about a minute looking at my teeth before saying that he was right - a scale and polish with the hygienist is all that's needed. I wonder if the dentist will warn the hygienist that I'm a terrifying patient to have in the practice ;oP He certainly couldn't get me out of there fast enough.

So that was last week, during which time my lungs have been slipping and I'm not sure how long I'm going to last. I've been taking things easy the past few days, trying to beat the old breathing bags into submission with rather a lot of salbutamol and prednisolone. I think I'm much the same today as I was yesterday, and I need to keep on a level as I'm going up to Edinburgh later in the week. I was supposed to be going up there tomorrow, but yesterday I had a phone call from Dr G's secretary giving me an appointment for a pre-portacath consultation on Thursday afternoon. This is good news. I've been waiting for this for what feels like ages. Dr G is going on holiday for two weeks after this, but his secretary said that he's trying to organise a date for theatre for when he gets back. Maybe I'll get a date for the operation when I see him on Thursday. I'm sure it'll give me a lot to think about on the drive north immediately after the appointment.

I'm sincerely hoping that I'm going to be okay while I'm in Edinburgh - breathing wise, I mean - but things are really quite iffy at the moment. I can manage if I stay still, but breathing and walking is something of a challenge. I've got an appointment with Dr H (asthma consultant) on Thursday next week so we'll see what he has to say, and how I am, but at the moment I'm very unimpressed with the state of things ... and I'm not excluding the possibility that I'll end up in hospital while I'm in Edinburgh :o( I hope not. I really do. I'll keep you informed.