Archives: Day-to-day

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!