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Last night was a toughy. Having just about managed to get myself off to bed without succumbing to narcoleptic attacks in the hallway between bathroom and bedroom after staying awake until nearly 11pm for my IV’s to finish, my NIV started playing up and cutting out on me while I was dozing off to sleep.

NIV essentially works by blowing air into your lungs and helping to suck it back out again,”assisting” your breathing muscles and respiratory system and ensuring a better flow of air – oxygen in and carbon dioxide out – through the night, thus avoiding CO2 build-up and the morning headaches I’d been suffering from for some weeks previously.

NIV is delivered through an almost air-tight mask strapped to your face, which ensures a seal around your nose and lips to make sure that the appropriate amounts of air are being supplied at the right time, with just a small exhaust port to make sure that you’re not re-breathing your own expelled CO2.

When the machine starts cutting out, you find yourself strapped into an air-less chamber which is not only no longer helping you breath, it’s now positively hindering you. Thus, when you’re nodding off to sleep, the odd sensation of forced breathing is replaced by a sudden lack of air and O2, and ever alert to the change, your body wakes you up again.

After drifting off and waking up three times in the first hour of “sleep” last night, I finally threw in the towel and took the mask off. The question now was what to do for the rest of the night. It was now 1am and I had to be up at 7am to do my morning dose of drugs.

I knew if I slept without oxygen, I would hardly sleep at all as my body won’t let me fall into a relaxed, shallow-breathing state of deep sleep since my oxygen levels then drop dangerously low. But with oxygen on, my CO2 retention sky rockets and by morning my body is slowly starting to poison itself and I wake with an almighty headache.

I think in polite circles they call it Hobson’s choice.

I got up and out of bed and sat myself on the sofa, nasal specs on, trying to decide my best cause of action. By 2am, my eyes couldn’t pretend to be awake any longer and I had to take myself back to bed, where I gave in and popped on my specs and tried to get comfy.

Having not tried “normal” (ie – unaided) sleep for weeks, I was surprised to find that my body didn’t take kindly a lying down and insisted on a more propped position than I had been used to with the NIV working. Eventually, after much tossing, turning and gasping for air at occasional moments, I managed to drift off. Surprisingly, I slept fairly continuously until my alarm woke me.

As I’d suspected, my headache attacked. On the plus side, I wasn’t as immobilised as I often can be by it, but it’s still not a pleasant sensation to wake up to. I did my drugs and took myself back off to bed, where I reattached my NIV and tried, fairly successfully, to sleep again.

Finally waking at 11am, I was dismayed to find that far from blowing off the CO2 from my system, the NIV appeared to have simply maintained the same levels and left my headache in situ – not part of the plan. But having got up out of bed and taken some painkillers, things soon righted themselves.

Once the headache had passed, I was delighted to find that I actually felt pretty well-rested and not near as shattered as I’d expected to be after such a late night and rough sleep. I set about sorting through the mass of disorganised paper-work in our new study and catching up with all the bills and demands that had been made of me since before I went into the Churchill some 3 weeks ago.

In fact, after a bad start, today has been remarkably productive. Not only have I caught up on a lot of stuff, I’ve also proved to myself my capacity for work and concentration now I’ve somewhere to shut myself away when I need it. Prevarication is going to get harder and harder now I’m making more and more steps in the right direction and continually proving my abilities and boundaries to myself.

A mate of mine, S, who had been instrumental in helping K make-over the study – taking things apart, building things, moving things, juggling things, drinking tea – popped round after work today, which was cool as I hadn’t seen him since I broke out. Even better, he came bearing a gift which blew me away.

Everywhere my bro travels (and he travels a LOT) he always brings me back a piece of artwork, however large or small, so that I can at least taste a morsel of the culture he’s explored. Over the years, I’ve collected up pieces from Australia, New Zealand, Tonga, Malawi, Egypt, Brazil, America, Italy and others. Last Christmas he bought me a panoramic photograph picture of Rio de Janeiro from his visit there. S has always been a big fan of the pic, but until now it’s sat rolled up on a shelf in my room, looking for a place to live.

Seeing a vast expanse of wall open up above the desk in the study as they assembled it, S took it upon himself to liberate the pic from my stuff and take it off to get it framed. He brough it back today looking nothing short of majestic and I can’t wait to get it up on my wall over the desk. I must confess, though, I am slightly concerned about losing myself in it every time my eye wanders from my keyboard.

The day improved so greatly as it went on that I don’t want to sully it with the Great Allied Respiratory Saga, but rest assured that this will not be the last you hear of it. The new home oxygen service has come in for a substantial amount of criticism in the past few months since its inception, and today I found out why.

My own personal story from today will grace this site in the next couple of days, but if you’re wanting to get a jump-start on the issues, why not check out Oxywalk – a new site dedicated to exposing the problems with the service.

For now, I’m going to quit while I’m ahead and remember that the qualities that make a day good or bad come merely from what you choose to highlight in your day.

A good friend of mine has recently been seeing a psychologist to help them through a particularly tough time in their lives and we were chatting about it a little while ago. They told me something their Crazy Doc had told them about managing negativity which has really stuck with me.

Negative thinking is like standing at a train station. When something happens to provoke “bad” thoughts, a train pulls into the station intent on taking you off on a journey through all your worst fears and insecurities, dragging up all the things which will drag you down and leading you on a sombre dance of distress.

But if you learn to recognise the triggers, you can provide a platform announcer in your head who can flag up the destination of the train pulling in and you can choose to stay on the platform. You can elect not to take the train to the dark place, but instead to board the daylight express to the end of the tunnel. You just have to be able to recognise the moments when you need the announcer.

It’s all well and good noting wisdom and realising its benefits, it’s quite another to put it into practice in everyday life.

Which is why I’m so happy about my day today and the way I’ve managed to avoid getting on the wrong train and instead enjoyed my time at home and looked forward to other things later in the week.

K took my mum out for a girlie shopping trip this afternoon, nominally looking for Christmas presents, but largely to look at pretty things and coo. I stayed at home in the flat, mostly to sleep.

In days gone by recently, this would have upset me. Not because I yearned for the chance to run around town pointing at prettiness (I’m not that girlified…), nor because I had a desire to nick a melange of treats from the sweetie barrow, but simply because they were doing something that I felt I couldn’t do.

But I chose not to get on that train, to avoid the Sloppy Bollocks Express to Tear Town, and instead jump on the Chill Train to the City of Smiles. Rather than see the afternoon as a missed opportunity to go out, it was instead a perfect opportunity to sit back, relax and pop on a DVD that I love but rarely get the chance to enjoy. (That’s The West Wing, not anything best “enjoyed” alone, you dirty minded older-brother-types. Yes, I’m talking to the twins.)

I find myself at my computer this evening not sullenly relaying stories of my abandonment, but finding ways of communicating how far I feel I’ve come in the last 24 hours in breaking the back of my adaptation process.

Life’s all about the ups and the downs – riding the waves and hoping not to fall off. But you always know that even if you do, all you have to do is paddle back out and you’ll pick up another one soon enough.

I may not get back to the level I was at before this summer, I may have to make changes and adjustments, I may want to scream and shout and tear the place down, but I know that with the love and support of all those around me, I’ll keep on going.

Kipling once wrote, “If you can meet with Triumph and Disaster / And treat those two impostors just the same,” then, “Yours is the Earth and everything that’s in it, / And – which is more – you’ll be a Man, my son!”.

My Triumph is waiting for me in the wings, and Disaster may be in the way, but you know what? I can take it. Hurl whatever you want at me, World, because sooner or later I’m going to have new lungs and I’m going to hurl it straight back!

The dynamics of my home have changed.

I used to live in a small, 2 bedroom flat on the 1st floor of a block in a small court at the Southern end of Bletchley in Milton Keynes, just up the road from the Bletchley Park of Enigma code-breaking machine fame. It was just the right size for me and my best friend, K, to co-habit peacefully yet maintain our own private spaces. It was cosy.

Geographically, I remain on the 1st floor in a court just up the road from Bletchley Park, of Enigma fame. There are, however, no longer 2 bedrooms. Since K and I got together some 5 months ago, we have discussed getting rid of the 2nd bedroom and giving me somewhere to write and us both somewhere to use the computer and to have a desk for all the usual house-hold administration-type stuff which was taking over our table in our lounge/diner.

While I was in hospital over the last two weeks, K took it upon herself to enlist the help of some very good friends of ours to transform her old bedroom into our newly formed study/library. Out with the bed, the chest of drawers and the telly and in with the bookcase, a desk and chair and a lava-lamp (for good creative-juice flow) along with a filing cabinet and desk-drawer unit for storage. A perfect little work-hole for both of us.

But that’s not the significant change.

What’s changed is that far from being a small, cosy little flat, when I returned from hospital I discovered my home to be a vast expanse of space around which is had become necessary not to pop from room to room, but to hike breathlessly between oxygen stations.

I spoke previously of the adaptations I’m having to make following my recent challenges and down-turns in health and this is simply another one, but it’s one I have to confess I didn’t see coming. I love my flat – I love it all the more now I’m sharing it increasingly with K, who is slowly moving herself back across from her parents’ house – and I just never thought that somewhere this compact and beautifully self-contained could present these sorts of challenges.

I now have oxygen piped into every room of the apartment, but it still necessitates switching from supply to supply between rooms, with O2 support-less journeys between piping points. Whereas I used to merrily flitter away all over the flat, tootling back and forth between kitchen and lounge and bedroom as many times as my delightfully dimwitted brain would require before collecting all the bits I’d need for, say, doing a nebuliser, I now find that forgetting an element of the cocktail requires a 5 minute break before setting out to correct the mistake.

K is doing amazingly at running around after my forgetfulness, but it’s infuriating to me that I can’t do the simple things without gasping for air, that checking on dinner in the oven requires preparation, precision movement and a recuperation period.

I know it’s something I’ll get used to, just the same way as I’m slowly getting used to sleeping with my NIV, the way I’m getting used to wearing my O2. I’ve adapted in the past; even as recently as September I learnt how to budget my time so that I had the energy to do the things that matter most and not waste my daily or weekly quota on frivolous or unnecessary things.

And I know I’ll adapt to my new home, too.

Already, I’m loving my study (our study) and my brain is starting to whirl with possibilities of new scripts and projects and ideas – seemingly freed by the knowledge that if I so desire, I can shut myself away from the rest of the world and tap at my keyboard 24/7 until my masterpiece emerges.

After all, they say if you give a infinite amount of monkeys an infinite number of typewriters, they’ll eventually turn out the Complete Works of Shakespeare. I just need my new lungs to give me that little bit more time to bash at the keys and see if I can’t luck into Hamlet.

23.01, Sunday 19 Nov

K brings me the phone, which she’s just answered, “It’s Nicky, from Harefield.”

“How are you feeling, Oli?”

“Okay.” Shitting myself.

“Any problems that you know of?”

“Nothing new.” My heart’s just stopped.

“We have a match for you on paper. It’s early in the process at the moment and our retrieval team is on the way there now, but we’d like to get you in. It might be a wild goose chase.”

“Okay.” Okay.

Surprisingly calmly (this being my second call from Harefield since I was listed 18 months ago), I gather my things and K gets un-ready for bed. 20 minutes later, we’re at Mum and Dad’s and squeezing into Mum’s Polo, my bro having borrowed my dad’s nice spacious estate for the week to move his stuff out of his barracks in Canterbury.

It struck me as we sailed down the empty, wind-swept, rainy M1 towards London that this may prove to be the most short-lived chronicle of a run-up to transplant in the history of the blogosphere. Wouldn’t that be upsetting?

We arrived at the hospital about half twelve and Nicky, the coordinator for the night, told me that the retrieval process was just starting and that there would be no news till after 3-3.30am.

The ever-efficient team then set about the myriad tests and odd-jobs the docs and nurses have to do pre-op. In no particular order (it’s somewhat of a blur, to be honest) I had 14 vials of blood taken, a venflon inserted (small cannula in the arm for giving drugs through), height, weight, temperature, blood pressure and O2 sats checked, a chest X-ray, and ECG (heart-monitor thing) and a few pieces of paperwork about me to fill in.

The most wonderful part of the exercise was without doubt the full-body shave and alcohol shower. Wonderful little clippers provided by the NHS did for what little body hair I had above the waist, and there were certain other bits of delicate work to do, too. Followed immediately by a shower using a full-body alcohol scrub like soap. And yes, if you’ve just sucked the air in through gritted teeth, that’s exactly what I did, too. Nice.

Prepped and gowned by 2.30am, we set about waiting. And waiting. It all seems to have passed in a blur now, but it was interminable at the time. As the clock ticked past 4am, I began slowly to unravel from my tightly-wound coil of security and self-knowledge.

Bizarrely, what starting playing on my mind wasn’t the fear of the op itself, nor the fact that I might not make it through. Instead, my mind fixated on what it would be like when I came around and I was enveloped in a fear of claustrophobia should I happen to come around while still attached to the ventilator afterwards.

The thing about anaesthetics and post-operative sedation is that it tends to meddle with your memory. So while you may be fully awake and alert and responsive, you may not actually remember it afterwards. Not remembering means that, to all intense and purposes, to you it didn’t happen. So I became somewhat obsessed with wanting to know at what point I would “wake up” – when my awareness post-operatively would kick in.

It wasn’t until 4.30am that Nicky came back to us, by now huddling close together in the room with everyone trying to seep strength into me. The retrieval surgeons had been in and looked and while, on paper, the lungs looked good, on closer inspection the team weren’t happy with what they saw and decided to abort the retrieval process.

It was a no-go.

It’s hard to describe the deflation of news like that – the total release of tension and relief mixed with bitter disappointment mixed with adrenaline-fuelled exhaustion.

Venflon removed, gown cast off, re-dressed in street clothes, I shuffled my way into a chair for a ride down to the car and the journey home. Arriving back at the flat at 6am, I flopped onto the sofa and did my morning dose of IVs which were now due, then slipped into bed, slid onto my NIV mask and promptly fell asleep.

Looking back on the experience today, after a totally lost morning and an afternoon of bleary-eyed chilling-out, it has been a lot easier to cope with than my first false alarm. All the way through the process I was a lot calmer than I was last time, largely helped y the fact that there were no surprises, I knew the drill and knew what to expect. The deflation, while marked, isn’t anywhere near comparable to last time and the roller-coaster of emotions is much more sedate. Gulliver’s Land compared to Alton Towers, tea-cups to waltzers.

I was interested by my reaction and how my fear manifested itself. the post-operative period has never really bothered me before, but that’s what my mind chose to focus on last night. With hindsight, it’s clear that it was merely the way my brain dealt with the general fear of the unknown, latching on to one element and amplifying it to take control and form a focal-point.

I spoke to Dad this afternoon and he’s already started a book on how many times from now we hear, “Third time lucky,” from people. I’m confidently predicting double-figures.

The best thing to happen today, however, is nothing to do with CF, Transplant, false-alarms or anything else. Suzanne, the practitioner and workshop-leader I work with at MK came over for a cuppa with her hubby this afternoon on their way home from Costco, the bulk-by warehouse and brought with them what can only be described as a VAT of Flumps, the little marshmallow shapes. I haven’t seen proper, official, perfect little flumps for YEARS and I’ve been searching high and low. And now, I’ve got a vat full of them!

It may have been a roller-coaster day, but my flumps will keep me smiling through it….!

The hardest thing to come out of my recent downturn in form – as it were – is the adaptation I’m having to make to the way I do things and the things I do.

Yesterday, my big bro took me out in the afternoon to catch the new Bond movie (which is fab, incidentally, if somewhat dumbed-down Hollywood in parts) in the Xscape Cineworld in town. The trouble is it’s about a 200-300 yard walk from car to screen, including going up a floor, which took me a long time to negotiate and a lot more energy than I was used to.

I’ve recently become accustomed to walking a lot slower than I used to, although I did go through a patch of setting off at marching pace for 10-15 yards before being pulled up by unhappy lungs protesting at the work rate. I’ve now learned to start out slowly and continue in the same vein, but this latest infection has left me with a real need for permanent oxygen supply – something my pride has not quite caught up with.

Last night, K had some old work colleagues over for a girlie night in, which I couldn’t avoid and actually really enjoyed (she’s really quite girlified me). But even though it was in our place, and spent entirely sat on the sofas in he lounge, I couldn’t bring myself to wear my O2 in front of the group.

Silly, I know, but a good example of the adaptations I’m having to make to carry on as normal. I’ve got to get used to the idea that I’m going to have to have my nasal specs on when people are here and, more troubling for the moment, I’m going to have to get used to taking a portable cylinder out with me when I leave the flat.

It’s hard to describe the battle of heart and mind that’s going on at the moment – my head knowing that things are not only easier but also much better with the O2 on, my heart not wanting to be seen as a “sick person” by all and sundry who see me in the street.

One of the few blessings of CF is that to the untrained eye (and often to the trained, if you ask medical students patrolling the wards in hospital), the average person with CF doesn’t look any different to the average person without CF. Slightly skinny, maybe, but skinniness is somewhat in vogue at the moment anyway (for the girls, at least) so it’s not a big thing.

Going out with nasal specs and an O2 cylinder is another matter altogether. No one else does that. “Normal” people don’t travel adorned with extra air. Which means admitting to the world that you’re not the He-Man you wanted them to think you were. Or, at the very least, admitting that you’re “different”.

It’s one of life’s little ironies that I’ve spent such a lot of my life championing individuality to my friends, family and, more than anyone, the kids in my workshops, and now here I find myself aching to conform, to fit in, to blend.

But needs must, and I know I’ll come around to it. I just need to be more forceful with myself and understand that if I’m wearing the O2, I’ll be able to do more than I can at the moment, and hopefully “freedom” will be the spur that allows me to come to terms with it.

Failing that, anyone with any other ideas, please let me know!

Blogs. There’s millions of ’em. The world has blogs coming out of it’s ears. The world has blogs coming out of pretty much every orifice. So why am I adding to the over-crowded madness and what’s this all about?

I’m here for me, mostly, but I’m also here in the vain hope that someone, somewhere, someday may find some useful knowledge or comfort in the words that will follow and the journey I’m embarking on.

18 months ago, in June 2005, I elected to go onto the active transplant list for a double-lung transplant. I have Cystic Fibrosis and over the course of a few years I had slowly declined to the point where my specialist team at the Churchill Hospital in Oxford arrived at the conclusion that I was now eligible for transplant.

I say “eligible” because transplant is a very odd thing: to be considered for the list you need to walk a very fine line between being ill enough to warrant a) taking the chance of a new life away from someone else on the waiting list and b) taking the risk that such a massive surgical procedure places on your already frail body, but at the same time being well enough that, complications aside, your body will have enough in reserve to withstand the rigours of surgery.

Since I went on the list in the middle of last year, my health has been stable and I’ve been relatively well. With CF, things are all relative.

In September this year, however, things took a turn for the worse and I’m now facing a countdown to the end of a race which is going to end on one of two sides of a coin. Only 50% of people who go on the transplant list actually receive the organs they require to go on and live a full and happy life. The other 50% die while they wait.

Throughout my life coping with the ups and downs of CF – and believe you me they are myriad – I’ve learnt one thing above all others. If you don’t laugh, you cry. Hence the title of this blog.

Whatever happens over the coming months and years, wherever my health takes me and whatever else life throws at me, this blog will be here not only to document the process, but also to remind me when the going gets to its very toughest, that the world is really a very funny place and you have to keep on smiling, because the other options are too dark to think of.

My intention in this blog is to chart my day-to-day progress, both physically and mentally, as I race the clock towards it’s ultimate conclusion – one way or the other.

I’m not (quite) vain enough to think that I’m going to change the world with a little diary-cum-biography-cum-progress report, but as with all things that I do, both for the Cystic Fibrosis Trust and in my life in general, if it makes a difference to just one person and helps them get through a tough time, helps them realise they are not alone or just shows them that life’s not always so bad after all, then it will be worth it.

Whatever you do in life, always have courage in your convictions – throw yourself into it with all your energy and strive every day to be the best that you can be. You truly never know what’s around the corner and regrets in life are the hardest thing to deal with when you face a ticking clock.