Archives: Hospital

I was back in Oxford today for the second half of my annual review and surprisingly, given the distinctly non-positive vibe that I’ve been getting from recent hospital visits, I actually came away feeling good today.

The diabetes tests looked clear – or at least not significantly abnormal, my blood sugars remaining pretty much within the normal range consistently for the last couple of weeks while I’ve been measuring them, which was a good start.

Even better, though, was my conversation with my consultant, the ever-wonderful Dr Bennett, who is encouraged by my progress since June.

I’ve been more and more breathless recently and it’s started to impact more and more on what I can and can’t do (as you’re no doubt aware if you’ve been following along).  Raising it with the team today I was fully expecting downcast looks and a feeling of, “that’s pretty much where you are now,” and facing a determination to put up with it and keep fighting.

To my immense pleasure and surprise, DocB felt that it’s something we can tackle, given the right effort and application and can aim to improve my breathlessness and stamina and bring my quality of life back up.

Looking at my health in general since my downturn in June, she suggested that although I’d had a really bad month and the infection had hit me very hard, it was encouraging to see that my lung function had pretty much returned to what it was pre-exacerbation – about 0.8./1.3 (actually dropping slightly to 0.7/1.2 today, but I was expecting that, and to go on IV’s, anyway).  What this indicates is that the infection, whilst making me seriously ill, doesn’t appear to have any lasting impact on the conditioning in my lungs.

What has been affected, clearly, is my exercise tolerance and muscle mass, both significantly weakened by spending the whole month in bed and by not being worked on in the four weeks or so since.  It is DocB’s belief that if we can work out an exercise plan, with extra oxygen support as necessary, and work to improve my cardio-vascular fitness, there’s no reason we can’t combat the breathlessness.

This was all news too me – good news, to be sure, but news all the same.  I had resigned myself, I think, to the downward slope of things ahead and didn’t really think there was much of a way around it.  So it feels pretty great to be told not only that there’s potential improvement around, but that the docs actually feel like it’s achievable.

Clearly, it’s not going to mean a massive turn around, but if I can raise my tolerance levels enough to manage a trip out of the house a little more often, maybe a stroll around Borders once in a while, it’ll make a big difference to keeping my spirits up.

It’s doubtless going to be a really hard slog and I don’t quite know how I’m going to deal with it at the moment.  I’ve never really pushed myself really hard through exercise and I’ve no doubt that whatever program I’m given, whilst laughably pitiful for regular mortals, is going to be a hell of a job for me.

But when you’re facing the months ahead that I’m facing, I suppose motivation should be too much of a factor – after all, my entire life right now is focused on stretching things out as long as I can until that call comes.  If doing 5 minutes of step ups a couple of times a day is going to help achieve that, I can learn to tolerate the gasping and rasping that comes with it.

I’m not entirely sure what day it is today.  I’m fairly confident it’s Saturday because there’s more sport and less Richard and Judy on TV, but as far as I’m aware it could just as easily be Tuesday week.

I’ve suffered something of a lack of sleep over the last few days and my body clock is so far out of synch I could be in Australia.  All thanks to my third aborted transplant call.

Aborted call, false alarm, non-go-ahead shout, call it what you will, it was my third foray down to Harefield in the middle of the night to be pricked, plugged and prepped for an op that never came.

This one was, however, at least mildly entertainingly different, being as I was a “back-up” recipient for the first time in my 3 calls.  The previous two times it has happened, I’ve been right ready to receive the lungs when it was decided they were no good.  This time, I was second in line to someone waiting (at another hospital) for both heart and lungs, which obviously come best as a package.  Should there have been anything wrong with the heart or should there have been any reason the other recipient was unable to go ahead with the operation,  I would have received the lungs.

This meant a very different thought process for me from the last times I was on ward F East, nervously waiting to be told if they were good enough or not.  This time, I was convinced from the moment I spoke to the T-C, Julie, at just after 11pm that it would not be my night.  Which lead, inevitably, to a VERY boring 5 hour wait in a room on the ward to be told that I wouldn’t be heading to theatre.

The saving grace of the whole night was the comforting knowledge that the heart had been fine and the heart and lungs were being transplanted into the original recipient on the list.  Not only did it mean that at least someone’s life was being transformed in the early commuter hours of Friday morning, but that the organs of a lost loved one were being put to the greatest use possible and that perhaps in days or weeks to come their family may draw some comfort from that fact.

As it happened, all the whole experience meant for me was an entire night with no sleep whatsoever, which in turn lead to sleeping from 7.30am (when we finally arrived home in the morning on Friday) until 2pm and sitting through the rest of the eternally-dragging day feeling beyond terrible, hardly able to lift myself from the bed to drink some water, let alone contemplate eating or doing anything more energetic like watching TV.

It was pretty horrible, to be honest, and a mark of how much my body now struggles to cope with the unexpected.  Without a night’s sleep to rest up and repair some of the daily damage, my body was truly struggling to cope and wasn’t backward in coming forward about it – it was making more than sure I knew about it.

Things are better today, after a sensible night’s sleep, although the tiredness is still pervasive and I could do with a kip every half-hour.  I’m sure after another day in bed and another good night’s sleep I’ll be back where I was before.

And at least this time I managed a whole 6 hours at Harefield without mortally offending someone.

I like to think that I’m a nice guy – I’m friendly, jocular (wow – now that’s a pretentious sounding word when you put it down in black-and-white), fairly unimposing generally and keen to get on with people.  I’m also always keen to make a good impression when I meet people.

Imagine my dismay – nay, my horror – at putting my foot so spectacularly in mouth that I could almost taste my kneecaps.  Not only that, but doing it with one of the lovely, friendly, wonderful and caring transplant coordinators, in whose hands – more or less – my life may rest.

The coordinators at Harefield (there are 4 of them) have changed around over the last year or so, meaning that I’ve actually only met 2 of them in person.  I’ve spoken to all of them and know them to talk to, but it’s still very different meeting someone in person.

So it was a delight to meet one of the disembodied voices at the clinic I went to yesterday.  In fact, she even shared my sentiments, telling me, “It’s nice to put a face to a name – to finally get to meet the person you know down a phone line.”

How lovely.  Being the self-depreciating chap that I am, I countered with a swift, “I’m always a bit disappointing, though.”

Only I didn’t.  The first word didn’t actually appear to emerge from my mouth when it should have been the most prominent part of the sentence, leaving merely, “Always a bit disappointing.”

It was one of those wonderful moments when you realise you’ve sunk yourself so deep into a giant well of not-very-niceness, when your stomach lurches and your brain races to catch up to say something to hurriedly recover the situation, but all the while you just know that nothing you can say is going to make it sound any better.

I drifted off into a daze of internal arguments with myself of how best to back-track, while the vast majority of my head is telling me not to say anything more as I’d only get more and more David Brent with every passing word.

By this time, of course, I look like I’ve just hurled and insult and shut up shop – even better!  Not only do I knock the lovely lady down, but I then ignore her completely.

I tell you something, my brain is in a LOT of trouble, not to mention my mouth for running off and starting the whole escapade before it’s communicated properly with the up-top.

Cringe-worthy introductions aside, and ignoring the fact that I spent the majority of my trip to Harefield yesterday waiting (appropriate, I suppose, given the subject of the visit and the hospital), it actually went rather well.  I think they could see that I’m no where near as well as I was last time I saw them and probably consider me a more important/urgent case than perhaps was their perception before they caught up with my  for my review yesterday.

So, provided the mortified coordinator (who shall remain firmly nameless) hasn’t sent a memo round telling everyone that I’m the last person on earth who should be given a second chance, I’m hopeful that my habit of getting through things almost exactly 6-months behind our Emily means that I’m due my new blowers any day now.

We can but hope.

I’ve come to the conclusion that if I’m going to be sitting around on my rump for the greater part of the passing days, then I might at least put the working parts of my body to good use and exercise my eyes and brain by learning some new stuff.

So in a spirit of adventure, I have embarked upon devouring the full 800-odd closely-typed pages of a biography of Churchill written by a man so famous that his name eludes me and shall continue to do until I clamber into bed this evening, seeing as I’m not inclined to rise myself from my typing post to go and check it now.

(The thought has just occurred to me that I could check the author’s name on Amazon, and even provide a link to said biography, save for the very important fact that it would interrupt my flow and my stream-of-consciousness would become merely a trickle.)

It’s heavy going, for sure, and I’m only managing about a chapter a day – any more and I don’t think I’d take any of it on board – but it’s fascinating stuff.  He was quite an impressive bloke that Churchill, not just bowler hats and cigars, you know.

I’m also working my way through the Alastair Campbell Diaries, which are just as fascinating, albeit in a very different way.  They’re much more easy to read and digest, too and being in daily-diary format (my personal preference for historical/biographic material) are much easier to pick up and put down.

I say easier to pick up, actually they’re mildly hard since they’re about the same numberr of pages, but in hardback not softcover, making Alastair Campbell more weighty than Churchill and I bet that’s not something oft said.

Given the political bent to my current reading, I have developed something of an obsession with it over the past few weeks and have additionally to my real-world reading, spent a lot of today online learning all about the parliamentary process and goings on in the Houses of Parliament.

They say you learn something new everyday, which is undoubtedly true, but by my judgement, I can after today go for the next eight and a half weeks without learning a thing and still hit my average for the quarter.

Other than that, I’ve not done much today.  Harefield tomorrow – I’m going to lobby them with my new-found political powers to bump me up to the top of the list and get my butt-sittery days behind me.

The funny thing about not doing very much is that when things do happen in your day, it makes them seem like a much bigger deal than perhaps they would seem on another day.

On the other hand, the ups and downs are coming in so thick and fast at the moment that I don’t really know what to do with myself at some points. Most weeks seem to end with an interesting good news/bad news summary for the week, although I try not to dwell on that too much lest the knowledge that the week contained more of the latter than the former start to drag me down again.

Then you get days like today, when the good news/bad news cycle suddenly notches up a gear and starts flying along quicker than a steroid-powered rider in the Tour de France.

I woke up this morning just before 9am, a good average morning wake up time, feeling pretty good. After doing my nebs and physio, I’d noticeably slowed down a good chunk and was feeling a distinct lack of energy. Immediately, my head starts to worry about how much of a struggle today is going to be.

Luckily for me, I didn’t have that much time to dwell on my thoughts because for three quarters of an hour between 11am and 11.45am, the phone didn’t stop ringing. If you want a clearer demonstration of a good news/bad news day, you’ll have to search long and hard. Although it was really bad news/good news. The phone calls went as follows:

– Lisa, my nurse from the Churchill in Oxford calls and tells me that the result from my Glucose Tolerance test in my annual review was high, a possible indicator of the beginning of CF-related diabetes (CFRD), more on which later, but suffice to say it didn’t put a smile on my face. She’s going to try to find me a blood sugar testing kit for me to monitor my sugars for a couple of weeks before my next clinic visit on 2nd August to see what’s going on.

– Mum phones. Tell her why I’m not sounding over-joyed. She tells me not to worry about the GTT. Immediately, it makes me worry. Mum only tells you not to worry when there’s something to worry about (or at least only says it in that tone of voice where she doesn’t sound entirely convinced there’s nothing to worry about). Tells me my Grandpa is up for the weekend if I want to come over and I’m left to ponder if I’ll have the energy to make a trip to Mum and Dad’s to see him.

– Emma calls to tell me that the Daily Mirror want to run a feature on me and Robyn, who is also currently waiting for a double lung transplant and also has CF, and is currently the face of National Transplant Week. She asks if I’d be interested. I know it’s not really a question because she knows how much of a media monkey I am. She has to check with Robyn, too, but will get back to me.

– Emma calls again, Robyn’s on board, so she gives me the writer’s details.

– I phone the Daily Mirror writer and talk to her a bit about donation and things. The spread will form part of their One in a Million campaign, through which they’re aiming to sign up a million potential organ donors. We arrange a proper telephone interview for Monday morning and I pass her Robyn’s details.

– K phones from work after I text her about the Mirror piece. She’s excited (she tends to be more excited than me about pretty much everything, for which she thinks I’m rubbish) but can’t talk for long, so I don’t tell her about the GTT results.

The thing is, I don’t really know what to feel about the possibility of CFRD. What confuses me is that the perception of people being diagnosed with diabetes is that a massive blow and in some ways the end of life as they know it. Just think how many “Oh God, I’ve got diabetes” stories you see in medical dramas and other TV shows. Just this week, K and I watched an episode of Brothers and Sisters, the new Channel 4 show, in which the family’s life crumbles around a daughter’s diabetes diagnosis.

But at the same time, I know plenty of people – many of my friends – who have diabetes and CFRD and it makes no apparent difference to their lives. There are countless stories of people doing all sorts of things through diabetes – take Steve Redgrave, who won an Olympic medal while dealing with it.

So it seems like it shouldn’t be that big a deal, but at the same time I think my mind has been programmed into thinking it’s a nightmare.

I certainly don’t relish the thought of yet more drugs and treatments and things to think about during the day, but as Lisa said on the phone today, it may explain why recovery times seem to be longer at the moment. Perhaps getting my blood sugars under control – if indeed they are out of control, which we still don’t know for sure – will open the door to a more full-on recovery and bring back other little aspects of life I’d given up on for the time being, like popping out to the shops.

I suppose the biggest problem with having not very much to do all day is that it gives you a lot of time to dwell – to think on things for far too long, when in an otherwise active life, you’d have busied yourself with something that takes your mind off it. When you feel so short of energy that you can’t engage with anything, your mind is free to take itself off to all sorts of places you’d rather it didn’t go.

So I’m deciding for myself tonight that I will go to bed not focusing on the “maybes” of dubious GTT results, and instead relish the the thought of FINALLY getting to maych Emily by hitting the National Press. OK, I’m a long way behind her in media stardom for now, but I’ve got much more in my tank yet. Just you watch…

Boy, annual reviews are depressing.

I’ve never liked the yearly MOT, ever since it was my only trudge over to Oxford every 12 months as part of my shared-care arrangement with Northampton Paediatric Unit (not an uncommon arrangement for PWCF, especially children), when it was marked with endless hors of waiting around and pointless questions from a doctor who you see but once a year but spends their brief meeting with you asking the sort of intimate question you’d struggle to find the courage – as a child/teenager – to answer your own doctor about.

Seriously, how many 14 year-old kids are going to sit in a consulting room with their Dad and answer anything but “No” when the doctor says, “do you smoke”?  Obviously, I never have, but there are those – even with CF – who do, and it is critical to their ongoing care that the doctors are aware of something like this.  Asking in front of Dad is not the way to go about finding out.

As the year’s have gone by, and the process has moved from being an annual schlep to Oxford to being just another clinic appointment with my adult team at the Churchill – and one that’s marked by a good deal less waiting and a good deal more friendliness – it’s taken on a paradoxically much more unpleasant feel to it.

If progress were marked on a chart – and with many areas of CF, it actually is – the over-riding theme of annual reviews is to watch the graph slip-sliding ever so slowly downwards in an ever-decreasing mountainside style.

This year, I suppose it reached it’s nadir – there isn’t a whole lot lower to go, and compared to last year, things look pretty (‘scuse the French) shite.  It’s hard to stay upbeat and positive when you’re looking back at a set of results which at the time were immensely disappointing, but for which now you’d give your proverbial eye teeth.

(By the way – can anyone tell me what eye teeth actually are and why they’re called that?  It’s dead confusing.  Answers on a postcard, kudos as a prize…)

There are moments of levity in the experience, though, things which I suppose I must cling to, although all of them come firmly in the category of “if you don’t laugh you’ll cry”.

Take the psychological survey, for instance, an 8 page document quizzing you on how CF affects your quality of life (or QOL as they like to put it), with the kind of inane multiplle choice answer boxes like A Lot, Not Much, A Bit, Not Really.

“Does CF affect your day-to-day life?”,  “Does CF prevent you from doing the things you want to do?”, “Does CF affect your relationships?”.  A monkey could answer these for me right now.

What did make my nurses laugh, though, was my minor fit of pique whereby I simply crossed out the entire section devoted to “social life and socialising”.  I wish.

I now have to wait a few weeks and head back for an ultrasound scan and then to see my doctors, who will have all of my results and can sit down and take me through them.  Can’t wait for that day – it should be a barrel of laughs.

Anyway, I’ve had enough of bleating about the awfulness of annual reviews, my chest and my life at the moment – I’m going to go and plonk myself on the sofa in front of a good movie and forget about everything.  Until I remember it again…

It had been my intention to sit down at some point and fill in the blanks of the past months with an epic, multi-post entry to tell my tale up to today (or up to whenever I got around to posting).

Luckily for all of you guys who are still bumbling across the site in the vain hope for a new entry, I’ve decided against it.

There are many reasons why I should and shouldn’t give up a full account of the last 4-5 weeks during which time I’ve managed to post a grand total of 0 times.

Over the months since I started this blog just before Christmas, I’ve shared a lot of the ups and downs, highs and lows, peaks and troughs of everyday life and tried to use this site as a tool to force myself to keep a bit of perspective on the whole thing – life in general and my health.  Sitting here now, after quite possibly the worst month of my life, it seems strange to say it, but I want to focus on moving forward more than raking over the past, even the not-so-distant past.

So, what you get is the shortened, edited, cut-down, weight-watchers version:

At the end of May, after my birthday, I was running pretty low, energy-wise.  In the middle of this low, I managed to pick up a cold.  Fighting the cold was one thing, but as is almost inevitable with CF, the amount of time and energy my immune system was expending  on fighting the cold virus meant I had no defences left to look after things in my lungs.

Before you could say, “seriously guys, I don’t feel very well,” I had collected myself a roaring infection and an inability to extricate myself from my bed.

After a bit of family decision making, I returned to the warm and caring centre of the family fold for my Mum to switch back to nurse/carer role in looking after me 24/7.

Even that wasn’t enough, though and within a week I was on the ward  in Oxford, having spiked an impressive temperature and gathered the mother of all infection markers.

Levels of infection in the body are most easily assessed by measuring the levels of C-reactive Protein (CRP).  Don’t ask me what it is, I just know that it should, in a normal person, be in the 0-4 range and that in PWCF it’s frequently around the 10 level, as we are often fighting low-level infection constantly.  Anything over 10 gets worrying and 20-30+ is cause for proper concern.

When I was admitted to the ward, I was told that the labs doing my bloods had stopped their CRP count when they got to 160.

Now, while I should be monumentally freaked out by all of this, I still can’t help but feel slightly short-changed as my good friend Emily once managed to mark up an impressively gob-smacking score of 400 – but they obviously like her enough to keep counting and not just give up when they get past “bloody high”.  Oh well, Em’s always done things more impressively than me, anyway.

In the midst of all this, there were lots of antibiotics being hurled around, different combos being tried here and there and various other drugs being tossed in my direction.

Most upsettingly for me at the time was being put onto a short course of steroids, which, at the dosage they were giving me, all but removed me from the active transplant list – my one chink of light in a world of enveloping blackness was being blotted out and I had no control over it.

June has been a true nightmare month, in every sense of the word.  From beginning to end I was struggling through every single day and at times it seemed like there was nowhere to go.  It is, without doubt, the closest I have come to meeting my maker and there were times over the last few weeks when I have honestly believed that someone was waiting outside the door with a conveniently held bucket for kicking.

One of the reasons I can’t take myself into much more detail than I already have is that a lot of the last few weeks is already a haze, my mind working it’s magical ways to blot out the middle-ground of strife and tedium and leaving me with but a few key moments lodged in my brain.

Thankfully, most of those key moments are the ones which give me the spur to push onwards and upwards and to keep fighting for my transplant.  There have been times in the last month when I’ve been in a darker place than I’ve ever been, but the knowledge that it’s possible to pull back from that and to recover to some semblance of normality again is reassuring beyond expression.

That’s not to say life is all sunshine and roses now – there’s a lot of things which are still a struggle and my world can still be a lonely place at times.  But I’m still here, I’m still fighting and I’m still able to laugh – at myself and others.

It’s been fitting that over the course of my last battles I’ve not managed to post anything on here, because smiling was the last thing on my mind through most of it.  Now, though, I’ve got something of my mojo back, and I’m revving up for the run-in to my new life.

Bring on the lungs, baby, I’m ready to roll.

Followers of this blog will be familiar with the various ups and down I’ve experienced over the last months since I began writing, and friends and family of mine know about them from much before then, to varying degrees. So when I say that this last Sunday gone marks possibly the lowest point I can remember, it isn’t a remark I make lightly.

More than ever, this entry in the blog is a personal one – one for me to look back on in the weeks and months to come as I look back over the trials and forward to what may lie ahead and to be able to see that I’ve come through worse than I’m going through.

Smile through it was designed as a pithy phrase to help me remember that when it comes down to it, laughter really is the best medicine, and that taking the time to remember the levity and vibrance that life gives us can turn a perpective upside down. Through most of the things I’ve been through in my life it’s an ability to laugh at myself and situation that’s really pulled me through, and having family and friends who share my often bleak and black sense of the humourous that helps beyond words.

But sometimes, even though part of you knows that you can fix it all with a grin and a giggle, your body and mind won’t let a smile cross your lips; not the glimmer of a smirk or a corner of the mouth upturned.

This is how I found myself on Sunday night.

Sitting on the edge of the bed at half-past nine, four days after coming out of hospital to renewed hope and the excitement of a new car, I found myself fighting for breath with a new sensation of pain and exhaustion ripping through my chest and as I stared almost vacantly at the floor, I felt an overwhelming desire to give up.

It’s hard to reconcile the feelings of joy I had at escaping the confines of the hospital last Wednesday with the hurried turnaround once I reached home. Aware as I was of the fact that I was by no means fully recovered, I was anxious to get back to something – anything – which even vaguely resembled normality: being able to choose what time I did my drugs, being able to sleep for hours during the day if I so wished, not having treatment times dictated to me by staff with a dozen other patients to see.

What I discovered, however, is that home can feel like more of a prison than any hospital ward. In the same way that the four walls of my hospital room started to feel reassuring and safe, home began to feel like a well-decorated prison cell, with a world of wonders on the outside.

I’m exaggerating, I’m sure – home is never really a prison – but as the weather turned warmer and sunnier, I just wanted to be outside. Coupled with our recent automobile acquisition, my sense of adventure began to take over and K and I began to explore the bounds of my stamina and the car’s performance.

Had I been more disciplined with myself and stricter in keeping myself bed-bound upon my return, I doubt I would have landed in the position I did on Sunday night. But then, had I not landed there, I don’t know if I’d be on the up-slope to recovery I find myself on now. Sometimes you need to plumb the depths before you feel the benefit of the clean-aired heights.

Sunday afternoon took the biscuit, really, as K and I set out for a pleasant Sunday drive around the countryside to enjoy the spring sunshine and run-in the new car. After and hour and a bit of driving, I began to feel the fatigue creeping in and by the time I got home after around 2 and a half hours out of the house, it was pretty much game over.

What alarmed me, and what caused the moment of pause on the edge of the bed as I got myself ready to sleep, was the new sensation within my chest which burst into prominence.

Back in the days when Emily had her knackered old blowers (not the shiny new ones she has now), she used to write in her blog about her chest throwing hissy fits and causing enforced rests and lie-downs. I thought I knew exactly what she meant, having felt the overwhelming tiredness and sense of exhaustion after over-exertion. But sitting on the end of the bed last Sunday, I realised that I hadn’t even touched the sides of it yet.

I’ve had chest pain before, usually pleuritic, occasionally pneumothorax-related, but always of the same variety: a sharp, stabbing pain the side of the chest, usually around the lining of the lungs, where one can imagine a large chunk of infected tissue rubbing angrily against a chest wall which is struggling to keep it in check.

This, however, was something entirely different. This time it was a kind of internal stinging sensation which felt like the inside of my lungs had been rubbed raw with a grater and immersed in a vat of TCP. And unlike the pleuritic pain, there was no sign of it fading away with a few deep breaths.

As I laid in bed on Sunday night, with K lying next to me and sensing my discomfort and utter dejection, I tried to put into words what was going through my head. Sadly, I am not the same wordsmith orally as I am on paper, and in the heat of the moment, my vocabulary failed me.

I sat and stared straight ahead of me and desperately tried to recall a time when I’d felt lower – more hopeless and filled with sadness. For a second, a fleeting moment at my parents’ house in the build up to Christmas after my hospital admission last November entered my head, but that had lasted just a few seconds and this decidedly not so.

The truth was, I was tired. Tired of the fighting, tired of the same old stories, the ups and downs, the scrapes and pickups, the ever-turning and tightening vice around my chest. I was tired and I just wanted it all to go away. Nothing anyone could say could make a difference – something K seemed to instinctively know and chose to observe.

Then the strangest thing happened. As I sat and contemplated the worst of scenarios, I thought about my brother and what he’s been through. Not only the completion of 11 weeks of impossibly hard training and testing and fighting for the commando course, which he had just last week reached the end of and grasped with proud hands his Green Beret, which will go with him everywhere from now on.

But also the times he’s fought through everywhere else: through his year out in Tonga, when he so nearly gave up and came home after just a couple of months, but stuck it out and had one of the most remarkable life experiences anyone can imagine; through his year at Sandhurst, fighting through test after test, performing top of his class, but never letting anyone know how truly hard work it was; right through to his running of the London marathon last year on a few week’s training and the number of people he inspired to sign up to the organ donor register, all because he told them he was doing it for me: I still bear the medal he took home, framed on my wall with his inscription, “Live The Dream” underneath.

I thought of all of these things and I saw myself reflected in his eyes and I realised that I couldn’t give up. What kind of message would that send out to my friends, my family, worst of all my Godchildren, my two fabulous, wonderful young boys who I vowed nearly a decade ago to watch over, guide and protect in the name of God? How could I possibly decide that enough was enough, just because I was tired and it was hard?

As images of my brother washed over me, seeing him at his lowest points of the last 11 weeks, fighting for strength through everything and finding it within himself to keep going, I knew that I had to keep going too. What’s more, I knew that if my parents had passed on to him the ability to keep going and never give up, then I must have the same genes flowing through my body, too. If one of us can, I’ve not doubt in my mind whatsoever that the other can, too.

Sunday 1st April, 2007 will go down in my mind and my history as the lowest point I ever reached in my battle through life so far. But when I look back on it, it won’t be with pain or disappointment, but with a profound sense of pride and pleasure that not matter how dark it got, I was able to see the tiniest, remotest speck of light at the end of the tunnel – and I will make it there. Sooner or later.

PS – this has taken me nearly an hour to write in one sitting and, tired and emotional as I am, I’m not about to sit and reread it for typos. If I’ve spelled something wrong, that shall be as much my legacy as the rest of the sentiments in this page. Be well xx

PPS – following the above revelation, I discovered on Monday the quote which you saw posted earlier in the week, which blew me away because it basically said everything I’ve said in the post above, but in less than 25 words. Some people just have a gift for short hand, I guess…

This is going to have to be a relatively short one (I can hear the cheers already), because I don’t have the energy to sit at the computer for long this evening after heading back across to Oxford this afternoon for a progress check.

Last night I reached my lowest ebb that I can remember for a long time – I honestly couldn’t remember a time when I’ve felt worse in my head about how I felt in my body.  The advantage of hitting an all-time low, however, is that there’s only one way left to go.

Hopefully, in the next couple of days I’ll be able to sit down and put into words the experience of the last couple of days, but for now surfice it to say that the bottom having been hit (stop giggling at the back), the upward spiral is now unfolding.

At Oxford this afternoon (which is a very comfortable drive in the new Mazda), my lung function was a pretty static 0.75/1.35 –  not very impressive, but equally not too concerning, either.  The docs made the, frankly not very difficult, decision to keep me on my current IV’s (gent and cef for those who are marking the card) for another week and to get me back in after Easter to see how things are going.

I had more Gent levels done today, which is a fairly easy process of 2 blood draws spaced an hour apart to get a pre-dose and post-dose peak and trough level for the drug in my blood stream.  Gent can have some pretty dodgy medium- and long-term side effects if given in too higher doses, so it’s important to make sure levels are checked regularly.

The next 24-48 hours is going to be taken up with almost total rest, as I’m hoping to head to London on Wednesday to fulfill a prior commitment which means a lot to me and I really don’t want to miss.  Following which will be another 48 hours enforced bed-rest on Thursday and Friday, for which I’ve already cleared my diary.

Fingers crossed everything has now turned the corner and is on the up.  Perhaps sometime soon my life might return to normal – or at least I’ll get used to whatever my new version of normal is.

…a discharge makes.

It took a while, but I finally managed to get myself kicked off the ward yesterday afternoon.  Probably more significantly, it was at the prompting of the docs and not through me harrying them as much as possible to get them to let me go.  In fact, in contrast to my usual practice of starting my “let me out now” lobbying campaign from the moment I arrive on the ward,  I actually didn’t mention it all to the docs until they raised it with me.

The thing about hospitals is that they provoke mood swings more severe and frequent than turns of a steering wheel in a rally car.  It’s possible to go from happy-go-lucky, ain’t-the-world-gorgeous, by-jove-what-a-wonderful-place to  weight-of-the-world, deepest, darkest blackness in a matter of seconds, and it can take a similar amount of time to recover back to normality.

None of which helps much when you’re trying to make sense of the random and rapid variety of things going on in your head throughout the course of the day.

If I said that’s the main reason I’m happy to be out and to be comfortably ensconced back at home in my study in my PJ’s and dressing gown, I have to admit I’d be lying.  Above all, it’s just nice to be back in control of my own day – not having to rely on the timings of physios, doctors, nurses and ward staff to decide when I can and can’t sleep, how long I’m allowed to rest for and the quality of my rest periods.

Back home, everything is part of my own control.  Except, ironically, my chest. But I suppose you can’t have it all.

I still don’t feel 100% – in fact I’m still wavering around 70% at the moment, but it’s a whole lot easier to be positive about outcomes when you’re not staring at the same 4 walls for 18 hours a day, or being woken up to eat a plate of mush which used to be vegetables.

It’s alarming when you spend as much time looking on the bright side as I do to find yourself in a situation where you can’t see a chink of light, let alone a whole side of brightness.  I’m sure that the very fact of feeling down about the world enhances itself because I get annoyed with myself for letting it get on top of me – a self-perpetuating circle, I suppose.

Now I’m home I just have to concentrate on doing what’s best for me and not over-working myself in my bid to get back to normality.  The last time I came outof a lengthy stay in hospital, I went back to Mum and Dad’s to recouperate, but this time I’m trying to skip that step and stay at the flat with K.

The next few days will tell us whether that’s a good or bad decision – largely depending on whether or not I can discipline myself to remain inactive as long as I need to be.  The danger of being at home as opposed to Mum and Dad’s is that there is far too much temptation to “just do” this and that, and all the this’s and that’s soon add up to being way too much and I find myself over-exerted again.

The main thing is that being back home I feel much more myself – more easy about things and less penned in to someone else’s routine.  Now I’m back I feel like my mind’s my own again and while it’s naturally going to take me a while to wash away all the negative thoughts, they’re certainly going to seep away much quicker in this environment that they were ever likely to on a ward.

I want to say a huge thank you to all of you who’ve left me messages and sent me emails – it makes such a difference to know that there are people out there rooting for me and willing me on.  It’s hard to explain the feeling of knowing that someone’s getting something valuable from a blog like this – it’s part of the reason I set it up but also one of the things I least expected to actually happen with it.

If nothing else, I hope the last few weeks (and hopefully the next few) will help to show that no matter what lows you sink to in health – be it mental or physical – there’s always a way back.  I’m under no illusions that sooner or later the physical is going to become insurmountable, but with a positive mental attitude (oooh, the PMA cliche!) and the support of my family and friends, I aim to make sure that I make it “later” – and preferably long enough to get a fresh set of blowers.

Take care, all of you, and look after yourselves.  Every single one of you is important to someone, and chances are you’re more important to some people than you will ever know.  Never forget that you’re amazing.

Alright, love-in over.