Archives: Day-to-day

In accordance with the law of New Year’s Eve (albeit a little early), I bring to you the grand announcement of changes to what’s fondly become known as… erm… Oli’s blog. I say “fondly”, but it’s more just because that’s really what makes the most sense.

Obviously, the cosmetics are the most obvious part, but the content is changing, too.

Since the controversy of “the deleted post” – well, not really controversy, but more of a disagreement with certain readers of the blog – I’ve been doing a lot of soul-searching about what this blog is all about and where’s it’s been going for the last few months.

I was sincerely toying with dispensing with it all together, before I realised that what this actually started out as was a place for me to keep track of the on-going changes in my life as I waited for – then received – a life-saving double-lung transplant. It was never really intended to be read by as many people as have stuck around from week-to-week and I’ve found myself slowing starting to write these posts for my readers and not for myself, which occurred to me as being totally against the idea of the blog in the first place and doubtless a part of the reason for trying to spice it up a little.

So I offer you all fair warning that from this moment on the blog will, once again, become boring. I will simply be keeping a record for myself of the head-spinning acceleration of changes my life is going through almost constantly now I’m over a year into my new life and am rapidly realising that I need to start doing something productive with myself.

New Year, new start (it was ever thus), so I will return to the good, but dull, old days of simply blogging about my life and goings on in my day-to-day life.

I wake up later than I have for a while at around 10am and realise I need to take my tac, so head downstairs, where I grab a bite and my tabs before running a cup of tea up to the still-snoozing K.

I shower and dress and start packing up as K comes to life, then we head down and wave off Mum and Dad who are heading off as fast as they can, since they’re back to a party this evening.

Before we head off, I slip my friend’s soon-to-be-Oscar-nominated short film, Gone Fishing into the family Blu-Ray player and head upstairs to watch it projected on the big screen in the cinema room. Although I got a real kick out of it on the small screen the 3 other times I’ve seen it, watching the 35mm print-made DVD with full digital sound ramps it up to another level.

I’ve honestly never seen a short film so accomplished in its technical efficiency, story-telling or sheer emotional impact. If you’re at all interested in film, I urge you to go here and pick yourself up a copy. You’ll probably know how much an Oscar campaign can cost to run, even for a short, and every penny made from these DVD sales goes towards the Oscar run which concludes in February at the ceremony itself. Please, please support this amazing, home-grown filmmaker with a true passion, talent and cutting edge in his field. He’s been a great support to me over the last 18 months and I’d love to repay him by giving him a bigger and better war-chest for the final push of his campaign.

The trailer, if you want to know a bit more about the flick, is here, for those of you who are interested. And for those of you who don’t understand a trailer for a short film, let me assure you this is nothing like the whole story – you really have to see the whole thing.

Once we’ve peeped Fishing out, we grab our bags, load the car and head off, making a quick detour through Ipswich to visit my Nana’s grave. I barely knew my Nana, my Mum’s mum, as she died when I was 3, but from the stories I’ve heard tell she was a remarkable woman. In fact, when I was a baby and in obvious (but then-inexplicable) pain, she was the only person who could quieten me down. I like to think that had she stayed around she’d have been proud of me and what I’ve done – and started to do – with my life and I hope that she smiles down on me from her lofty perch.

Once we’d say a hello and Happy Christmas to Nana, we jump back in the car and head back to MK and home to see it in daylight for the first time in nearly a week.

We head to Tesco to pick up a few essentials, then hit the flat and unload the car. We were planning on heading out to catch Australia tonight, but based on the fact that we’re both shattered and the film runs close to 3 hours, we change our call and opt for a night in instead. We throw on Jersey Girl and kick back on the sofa. As soon as the flick’s done, we’re straight off to bed and we both pass out pretty quickly.

We’re up unconscionably early for the morning after the night before at around 9am to grab a bacon sarnie and hot cup of much needed caffeine-delivery before jumping into the cars for a 3-hour trip into London to Twickenham, where my Godfather has a box.

Once there, we are treated to more wine (from a regular bottle, this time – if a 2001 can be called “regular”) and another fine meal before adding as many layers as we were able to carry with us to perch outside in the stadium for Harlequins vs Leicester. As a Northampton Saints fan, I’m duty-bound not to support the Tigers, but since Quins were sporting an old school friend wearing their captains armband, it stopped me having any kind of conflicted of – dare I say it – neutral feelings about the game.

Entertainingly, for a game without huge excitement, my old school buddy gets himself sin-binned 10 minutes from half-time, during which time he sees his side ship 13 points to the visitors. The second half isn’t a whole lot more entertaining, until the last 10 minutes when Quins come back from 26-16 down to draw the game with a last minute try and conversion which is all but the last kick of the game. Stunning come back that had me properly out of my seat.

After a warming glass of brandy and some good steak pies, we all pile back into the cars and head back. Wtih my eyes arguing with my brain about staying awake, I’m glad I opted to stop the extra night in Ipswich so I don’t have to do any driving this evening. As soon as we’re out of London, my body sides with my eyes and sends me to sleep before waking just short of the Dartford crossing, from where I stay awake-but-monosyllabic for the rest of the ride back.

We get back and all grab a thirst-quencher (mostly non-alcoholic) and chill in the living room, introducing my ‘rents to the glory of Outnumbered, after which K hits the hay early and I challenge Dad to a game of his newly-acquired Really Nasty Golf, a board game that’s far more interesting and entertaining that it sounds, I promise, even if you don’t like golf. Mum excuses herself to bed as we play and slowly the house quietens as people head off for kip, before we head up to follow them at the end of the game, around 11pm.

Boxing Day starts slowly with an 8.30 alarm call upon which I find K still sound asleep despite claiming to be getting up at 8am to shower and wash her hair. I nudge her awake and we realise her alarm failed to go off, largely due to a failure of being set.

Devoid of any major urgency for the day, she ambles out of bed and into the shower while I sit in bed and read awhile until she’s done, when I get myself up, washed and dressed and we head down stairs. I grab coffee, K tea, and Mama D cooks us up some French toast and bacon for breakfast to sustain us on the drive to Ipswich to catch up with my folks.

We load the car up with bags of gifts from yesterday and head off, stopping in at the flat on the way past to drop some bits off and pick up the various bits we forgot, like my swimmers, and some extras we need having arranged to stay another night after tonight, rather than shoot back tomorrow night.

We eventually leave MK around 11.30 and arrive in Ipswich after an amazingly quick and unproblematic run between 12.30 and 1. Once there, I unload the car and say my hellos to the fam and to my Godfather and his fam, plus the other guests at the Boxing Day lunch, a work colleague of G and his family. I’m slightly embarrassed by the familiar way his daughters greet me as I have no recollection of meeting them before, but they seem to know me instantly. I’m sure they noticed, but we still ended up all getting on really well.

After a chill and a chat, we hit the dinner table for a cold-meat and salad lunch which we crack through. The wine on the table in five separate decanters is from a single, epically-sized 5-litre bottle of red on the side. I forget to look at what it is, but hate to think where it came from and what it cost.

After lunch we head up to the cinema room to play with the newly-installed Wii Fit on the giant screen – it’s an amazing experience which could only be bettered were I to have any kind of balance whatsoever.

A little later in the afternoon, once the dark has drawn in, we all change into our swimmers and hit the pool. The outdoor pool. Swimming outside in England is strange enough at the best of times, but on Boxing Day in the middle of winter it’s straight-up surreal.

We mess around and throw balls to-and-fro across the pool into the inky, steamy blackness where we hope to find a person to collect and return the ball and then start playing “toss the ball at the girls in the jacuzzi” which is fun for a while until I managed to nearly knock Mum out with a badly-aimed and over-powerful throw. The games cease.

I swim properly for a little bit, but am not feeling my fittest, filled as I am with nearly a week’s worth of gourmet over-indulgence, so settle in for a quick jacuzzi before calling it a night and showering, dressing and grabbing a beer.

Post-swim we all sit around nattering, drinking a little more and enjoying the chlorinated glow of the night’s festivities. The others leave sometime after midnight and we all hastily call it a night to get some rest before tomorrow.

Christmas morning starts early-ish (although later than anyone with small children, I’ll wager) at around 8.30 when I wake to see K staring at me eagerly waiting for me to wake up to start our day. K is somewhat like a small child at Christmas, being very excitable and extremely cute.

We lay in bed and open our “stockings” and the first signs that I’m spending my first Christmas away from my family creep in – our family use hanging stockings (or football socks at a push) whereas K’s family use small bags to fit the stocking presents in, meaning you can fit bigger and – frankly – cooler presents in. No more packs of pencils, chocolate coins and a satsuma (although I did miss the fruit), in come books, DVDs and other enjoyables. But it’s still a bit odd.

We get up and head downstairs, greeting K’s Ma and Pa with the usual Merry Christmases and such before settling into a gorgeous cooked breakfast with the customary bucks fizz. I usually skip the booze, but this morning I join in and it’s not as horrible as I remember it.

The rest of the morning is spent helping sort out the necessary bits and pieces – clearing and laying the table, wrapping the family-custom table presents for everyone and sorting out the last-minute bits and pieces for cooking.

Mid-morning I get a call from Mum and Dad, who are in Ipswich with my Godfather, just before I’m about to phone them. They’ve just heard from
my bro and are happy that he’s managed to make it to a phone (or at least to dig out the Sat phone). He’s had a pretty rubbish Christmas Eve, but is looking forward to the carefully saved Pot Noodles for Christmas dinner.

At the end of the morning, Bro 2.2 arrives with family in two, one of whom is suffering from a heavy cold, which means I’m forced to keep an unfestive distance. We crack our first round of presents with them (another difference from my gang, who would have torn into them all by now) and appreciation is shared all round.

They head off after a while so they can get their eldest onto his Moto-cross bike which Father Christmas (and the Birthday Fairy) brought him before dark.

We continue chilling/working on the room/table while Mama D cooks up a storm in the kitchen. Mid-afternoon Bro 2.1 arrives with family in tow and we sit down to a cracking Christmas feast.

Post-dinner we all repair to the lounge to tear into our gifts and celebrate in style. The kids, by this point, are starting to feel their 5am wake-up and getting sleepy, but they behave impeccably, if somewhat quieter than usual.

Once they’ve all gone and we’ve cleared the detritus, we settle in front of the telly to veg out and try not to fall asleep before a sensible time in the evening. We watch the new Wallace and Gromit and the Xmas Strictly then end up sitting through most of a random out-takes program before finally dragging ourselves up to our Christmas bed around 10.30pm.

It’s always weird seeing what other families do at Christmas and today was a little on the odd side, but at the same time it was lovely to do things a little differently for a change.

Just a day to go till the big 2008th birthday of little baby J, the dude that started it all, in more ways than one. Also the dude that finished it all, which is odd. As well as being the dude that landed in the middle of it all. All things to all people, I guess.

We were up, again, ridiculously early at 8am (it’s funny how your perception of early changes when you aren’t being forced into 6am starts) to get ourselves ready for the shift across to Deanshanger and all of K’s immediate family.

My first job, irritatingly, is to head over to the other side of MK to fetch K’s present, which I’ve been messed about on first by the initial website I ordered from, then by the courier company I’d paid extra to get delivery to me before Christmas as I didn’t want this precise situation to ensue. Still, it’s not rocket science to get sorted and I’m home half-an-hour later in time to wake K with a cuppa and kick her (lovingly) out from under the covers.

We shoot across to K’s GP to get her her second Hep B jab, a necessity brought on by the likelihood of her working in dodgy environments within the NHS (and that’s just the offices), and she also managed to wangle a ‘flu jab that had meant to have been done much, much earlier, but better late than never, I suppose.

I giggled, not very kindly, because I’d had a ‘flu jab earlier in the year and not been able to sleep on the arm that I got the shot in, and now K had managed to get both arms shot in on the same day – tonight was going to be fun!

We scrambled back home to finish off our wrapping and packing – well, I had to finish (read: do) my wrapping, since K is far more organised than I am and had done all of ours and all of hers, but couldn’t really be left with mine to do for her as it’s somewhat prone to spoiling the surprise.

All set for a cracking Chrimbo, we shoot to bro number 2’s (or is that 2.2, or 2.1 – how do you count twins?) place to hang out with the kids and for K to attempt to work them into a pre-Father Chrismas-visit frenzy, which she ends up proving unable to do thanks to their already way over heightened excitement levels as it is.

We chill with them for a while until they have to go out for festive fun in the neighbourhood and head up to her ‘rents place to unpack and chillax for the evening. On the way, we pass them walking down to Bro No 1’s new house that they moved into last weekend (awesome timing on their part, eh?). We tell them to jump in the car and we whizz round to the new place and peep it out.

It has to be said it’s absolutely gorgeous – the first new-build I’ve seen in a long while with large, airy rooms, a warm, homely feel and a garden larger than a postage stamp. It may be that, due to work movements and such, they only end up being there for six months (they’re renting it while they assess their options and settle into new routines), but it’s a great place to be and more handy for the kids’ school, too, but still in the village.

We hang out there for a while, playing board games and – for the first time in donkey’s years – marbles with the kids until we realise we’d be better off out of their hair as the matriarch has to not only prepare for the imminent Santa-arrival, but also cope with all the usualy 3-day-old move unpacking and sorting.

Back at the ‘rents, we show K’s mum a short film a friend of mine made, which has her in tears and makes K feel terrible and me feel worse because K at least had the excuse that she didn’t realise it would upset her mum, whereas I knew full well it’s too sad a movie not to illicit tears from her.

While we crack on with Christmas prep, finishing off bits of wrapping and peeling sprouts, we are invited back down to bro 2.2’s place for a beer, which I opt not to go for so I can drive K around the village and stop the cold going to her legs, which would pretty much ruin the night for her.

After catching the Christmas ep of Gavin and Stacey, the first ever Gav ep that’s made me laugh out loud, we head back up to the ‘rents and grab D to take her with us (or for her to take us) to the midnight service at the village church.

Midnight is a traditional thing for my family to do together on Christmas eve whenever we’re at home and I’d not managed to make it thanks to illness for something approaching three years if my memory serves. That, combined with not having my ‘rents around and thinking of my bro out in the field in some unknown part of the world got me really and truly upset – and in a church full of people I don’t know.

After the service, I’m feeling very reflective and worried about my bro and the situation he’s in – which I have to acknowledge I know almost nothing of, for security and operational reasons. I drop a text to Mum and Dad to tell the I miss them and I go to bed with a heart far too heavy for the festive season.

The Christmas roller coaster continues on it’s ever-hastening track with a visit to Southend to see A&A and Sebby G, the newest addition to my Mum’s side of the family.

Try as I might (even with the might of Google) I can’t figure out what relationship he is to me, though. What I’m almost sure of is that he’s either a second cousin or a first cousin once removed. An initial Google search turned up a definition making him my second cousin, being a child of my first cousin. The mighty (but often incorrect) WIkipedia, however, suggets the child of a first cousin as being my first cousin once removed, by dint of the fact that our shared relation is one-step removed between us (ie, my shared relation with my Cousin is my Grandfather, and Seb’s Great-Grandfather), which makes more sense to me, although frankly, it’s way too early in the morning to be calculating all this.

Anyway, he’s the newest edition to my extended clan and whichever way you look at it, he’s awesomely cute.

We were up at 8 for the drive, which didn’t take us as long as expected, even though it involved the M25 on the last “trucking” day before Christmas. Arriving around 12, we all immediately set about scrapping over first dibs on Seb, but were scuppered by his mother handing him straight over to my mum. Although, frankly, she’d have got him first anyway, she could beat any of us in a fight if she wanted cuddles.

Taking my lead from last night’s Ebn cuddle order, I swept in for seconds after mum, but managed simply to cause the little one to burst into tears, being rescued by K, who shut him up immediately with some random female witch-doctor power that she has.

Lunch was a separate whole bundle of fun, enjoying as we did a Raqlette (which K will no doubt sweep in and spell-check for me when she reads this) which is essentially a really easy way to cater for groups as it involves cooking your own food in a delightfully fun way. There is a grill element covered by a large slab of granite on which you cook strips of meat, veg or whatever else takes your fancy, while underneath you have a mini-frying pan to slip under the grill to melt cheese or fry quails eggs, as is your wont.

The only issues with this style of dining are that you never know when you’ve eaten too much until it’s too late and, from my perspective, it’s almost impossible to keep track of how much you’re eating and thusly how many Creon to take in order to make sure it’s all digested.

Once we’d laughed our way through a cracking meal, we all settled our stomachs by making arses out of our selves on the Wii-Fit, a ridiculously stupid device that uses your body-weight on a board to move the characters in a computer game.

I soon realised it wasn’t my day when I tried out the Yoga challenges and not only couldn’t even manage a single press-up, but end up almost flat on my face from trying to be a tree. Balance is not my forte.

By this time, after his post-lunch nap, Sebastian was being passed around the room again and this time turned the opposite cheek, crying at K and falling asleep again as soon as he came to me. Clearly an indecisive kid, although he certainly knows when he wants to sleep and when he doesn’t. He managed, through the course of the Raqlette, to sleep through two smoke alarms going off directly above his head.

By 7pm we were all pretty shattered and I still had a 2-hour plus drive ahead of me, since I’d been dedicated (or foolishly volunteered to be) sober-one for the day, seeing as we had to use my car anyway following a minor mishap on my mother’s part in Dad’s car.

On the road just after 7, we eventually got back to our humble little homestead about 9 and pretty much directly hit the sack. I love Christmas.

Who’d have thought that going to a theme park in the middle of winter could be fun? I suppose it helped that it wasn’t totally freezing, just a bit on the nippy side. I think the thing that really makes it, though, is the company you keep on days like today and I couldn’t have had better company for keeping the place cheery and fun than my Godson whose idea it was to go in the first place.

Gulliver’s Land in MK is the place I took him the very first time we went out together on our tod. He was probably not a lot older than 5 or 6 and Gulliver’s caters perfectly to that age, with a large selection of Alton Towers-lite rides that are fun and a little scary but largely all appropriate for the post-toddler age group.

Now pushing 11 and with me lolloping up through my 20s it occurred to me that it might not be as intensely amusing as the last time we went, but if anything we had more fun today than we had last time, despite the larger half of the park being closed off due either to the wintry weather conditions or the low levels of staffing.

We managed to amble around the park for a few hours of festive fun, queuing for almost nothing and having a whale of a time on just about everything (altough the Might Mouse roller coaster was neither mighty nor really a roller coaster so much as a large figure of 8 with a train on it). In fact, many of the rides were incredibly dull, but I haven’t laughed so much and so solidly for quite a while.

Dodgems with only two people is an interesting experience, as is riding the same mini-whirly-pirate ship four times in a row, although ride of the day has to go to the back-to-back teacup rides which left us both staggering around the park like Santa getting off his sleigh at the end of a globe-trotting 24 hours of non-stop sherry and pies. Mind you, if we’d had the pies they wouldn’t have been safe in our stomachs (images of the Red Dwarf “food escape!” slipping into my head…).

And, ironically for a theme park – which are, at the best of times, renowned for their escalated prices within the boundary walls – we actually found the city’s cheapest pick-n-mix, which delighted not only the two of us, but also K when we arrived to pick her up from work with her own little bag of goodies.

After a quick cuppa back home, we then assaulted the arcades in the snow dome and whittled away even more time and pocket-heavy change doing everything from shooting zombies to playing mock-basketball before running Li’l R home.

We made a quick dash to Tesco for a few last Chrimbo bits before heading across the road from ours to see a friend and her mum for a little festive cheer with mulled wine and assorted Christmas treats (pigs in blankets, anyone?) and to have cuddles with not-so-little Baby E.

Having wedged herself in for firsties on E this evening, I have taken the executive decision that K has forfeited her rights to first cuddles with Sebby G, my cousin’s newborn, when we see them tomorrow. Although I suspect I may end up in a fist-fight with my mum over him, I know that I have dibs on first cuddles between us to at least.

I can’t wait!

PS – today also saw the internet debut of Live Life Then Give Life’s latest video piece, which I directed, shot and edited to highlight the varying attitudes to Christmas from different transplant perspectives. You can check it out here.

So after my ill-advised comments on the frustrations of seeing Mamma Mia knock Titanic of the top spot in the historical British box office charts I thought I ought to make sure today’s is something that’s not going to get anybody’s backs up.

So here it is:

Today, I drank 2 cups of tea and I also had some smoothie made from just fruit and nothing else and I went shopping a little bit and got some stamps and some other things.

K is poorly, which is sad.

I hope this post hasn’t caused any offence.

It’s been a really strange day today, giving me a surreal, 3rd-person insight into how my life has changed in the last 13 months.

I was out for the day filming with Emily for the Live Life Then Give Life website – part of our new media project to add even more impact to our life stories by getting the people in question on film.

First port of call was our fabulous advocate (or Fabocate, if you will) Jess, who has been waiting nearly 3-and-a-half years for a double-lung transplant and is now way beyond the “worrying” stage of the wait and headed rapidly downhill. Sitting an interviewing her at her home in Kent, I remember how similar I was last year just weeks before my call – I couldn’t really move around, everything was a struggle and, mentally, I was right on the verge of giving it all up.

She also made me realise, however, just why people find people with CF so inspiring. As I sat and watched her making light of her situation while pausing for enormous, breath-stealing coughing fits, I saw in her something which I suppose many people once saw in me – a determination not to be beaten by something we’d battled for years. More than that, though, I sat there and wondered to myself how on earth I did it.

At the time, you don’t really have a choice, you just get on with it, but looking at it from the outside yesterday I could see just how much hard work it is to stay alive and keep fighting and I was blown away by Jess’s willpower. She’s a phenomenal girl and I hope and pray that she gets the call she so desperately needs now.

By way of total contrast, we left Jess in the mid-afternoon and traveled to Epsom in Surrey to talk to another one of our advocates, Lisa, who is celebrating, like Emily and I, her second Christmas post-transplant. In fact, Lisa, Emily and I were all transplanted in 2007, spreading ourselves through the year – Emily first, in January, Lisa later on and then I brought up the rear in November.

Talking to Lisa I was given chance to reflect on the changes that happen between the state we were all in pre-transplant and the freedom and joy we all feel now it’s behind us. We’re all incredibly lucky people, but it made me realised even more strongly than usual just why we all work so hard to raise the profile of organ donation – this life we’re living now is amazing, remarkable and truly miraculous, but we still lose over a 1000 people who need a transplant every year. That’s more than 10% of the people who are on the waiting list.

It doesn’t have to be like that – we can all help to change it by talking to our loved ones about our wishes and making them talk to their friends and their families and to let everyone know that giving someone the gift of life when you no longer have yours is the greatest thing anyone can do for another human being.

Sign up. And Talk.