Archives: Sport

7 Weeks To Go: It Just Got Real [3 Peaks]

I must apologise for the lack of updates. If I’m honest, it’s been a rough time lately and with all kinds of work pressures and the added physical trial of training full-bore for the first time in my life, I’ve honestly been questioning whether or not this was going to happen at all.

I’m delighted to announce, however, that a major pharmaceutical company have agreed to fully-fund the 3 Peaks trip and that we’ll definitely be headed north to Scotland on Friday 3rd June to begin 24 hours of mountain-climbing, mountain descents and driving in between.

I was recently featured in another article online to promote not just the trip but the amazing support the guys at Topnotch Health Clubs have given me, including invaluable training advice and nutrition tips.

Really, though, there’s only one thing that stands out today, with 7 weeks to go. Today in the gym I ran, comfortably, for the first time in my life.

After a 15 minute session walking at speed on an incline on the treadmill, I spent the final two minutes jogging on the flat and for the first time ever – absolutely literally – I didn’t have to stop from feeling out of breath, sore in the legs or with chest pains ((not heart-attack chest pains, but I used to get a lot of pain across my scar when I tried to run)).

If nothing else, I’ve proved to myself and my donor that these new lungs are being used for the very best they can. I’ve never been fitter, never felt better and never been able to take so much on my plate as I have at the moment.

I cannot describe how amazing and brilliant this feels. And I cannot express my gratitude to my donor and their family for giving me the chance to feel like this. If you haven’t already, show your support for me, for the trek and for organ donation by signing-up and/or reTweeting/sharing the dedicated sign-up link from NHSBT, http://bit.ly/oli3peaks

Saints go down again

Today is the first day in a long, long time that I can remember not having to set an alarm or otherwise being awake before a sensible hour and it’s wonderfully delightful. I rouse around 10.30am and roll out of bed, leaving K to doze a bit while I catch up on the blog.

I head to the loo and to make coffee and discover that K’s been awake for over an hour and has been sat in bed reading, having heard the typing and thought I was busy writing proper stuff (rather than a pointless blog). I feel bad, as we could have had a nice lie in together, so I head to the kitchen, make us a tea and a coffee and then grab K’s laptop from the living room and we settle into the bed to watch the ITV-Catchup of Ben Shepard’s new Krypton Factor re-do.

It’s actually pretty similar to the old one and just as entertaining, although I’m annoyed that they’ve dropped the flight-simulator round from it in favour of an extended obstacle course. I still can’t do most of the tasks – at least the mental ones you can do from the sofa. I’m sure I’d rock at the ones you can’t try from home.

Once we’ve watched that and a couple of other bits and pieces, we drag ourselves out of bed and get showered and dressed to pop over to Mum & Dad’s to catch the football – Saints playing Man Utd on Setanta.

Sadly, it’s not the world’s most legendary game. An upset was never really on the cards, but we acquitted ourselves well given the fact that we had a man contentiously (although, I argued rightly) sent off and a penalty that really, truly wasn’t given against us, too. 3-0 is by no means an embarrassment to the kids who make up the modern Saints team, but it’s still disappointing.

After the footie we hang around for a dinner party with some of the ‘rents friends, which is really nice as I’ve not seen many of them for quite a while.

While Mum’s getting ready to serve, we get a call from Tim, which brightens everyone’s mood, then we sit down to eat and by the end of the meal (and the wine) the discussion is getting deeper and deeper into the politics of Afghanistan, America, the UK and the Taliban and everyone’s inter-relationships with Pakistan and other places.

I feel a bit out of my depth, as I often do in political discussions, but I still wade in with my opinions, mostly gleaned from things I’ve heard through other people, particularly my bro. It’s interesting how people’s views can differ so vastly and it just served to highlight the fact that none of us really know what’s going on over there.

We head off about 9.30, on the hunt for an early night. We drop one of Mum’s friends home on our way past, drive through a massive flood which seemed entirely out of keeping with the current amounts of rainfall, then get home, jump into comfy clothes and sit in front of The Recruit on TV for a while, until I’m too tired to stay awake and I call it a night.

Quins vs Leicester – Twickenham

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.

Cohens and Dons

Up at 6am this morning to get K to her Uni train for her long day – 9am lecture start and solid work through until 4 – pretty epic, really.  Still, if one will choose the hardest working course outside of Law and Medicine, what do you expect?  What I expect is, of course, huge backlash from every single student who reads this blog telling me that they’re course is just as hard-working as any other.  I won’t believe them, though.  Especially the Media students…

Back home I managed to get through quite a bit of stuff, looking into a couple of new business opportunities which may help me in setting up the company I most want to run as well as getting through some Live Life stuff which has been sitting on my desk for a while.

Around 10ish I gave in and took myself off to bed for an hour as I couldn’t keep my eyes open, then got myself up to head in to the flicks to catch Burn After Reading, the new Cohen brothers film.

I must confess I’m not exactly a Cohen brothers fan.  Blood Simple and Miller’s Crossing apart, I tend to find their films a little too quirky and impenetrable for my tastes, however much I want to like them desperately.  No Country For Old Men is a case in point, where the majority of the movie had me gripped and was really well put together, but the last act just left me cold.  It wasn’t even as if I could pinpoint what they were trying to do and addmire it, as I frequently can and do with films I don’t like but see the merit in.  I was just baffled.

Burn After Reading is more my kind of thing.  It’s got the Cohen quirks, but at a much more restrained level and features a fantastic cast doing some of their best work in a long time.  Not just George Clooney, Brad Pitt and Frances McDormand, either – J K Simmons knocks his ever-so-brief role out of the park and hits all the right comic notes and the rest of the cast are equally impeccable.

The plot is cleverly convoluted without getting beyond the audience.  The confusions and mix-ups that make a good thriller are in place, as is the almost trademark high-violence of the Cohens, albeit somewhat restrained from some of the rest of their pieces.  Pitt really lets himself go and looks like he’s having a wail of a time, but then I’ve been a fan of his for years, since the days before he was BRAD PITT or Mr. Jolie.

With the up-coming Changling, I think both Mr and Mrs Pitt are coming back to show that they have the talent to raise themselves above the kind of tabloid-fodder which has caused or reflected many a career misstep.  I’m always excited to see either of them work and when they come up with a cracker – as in the case of Fight Club, Se7en or Legends of the Fall for Pitt, Gia or Girl, Interrupted for Jolie – it always really pleases me.

If you’re a Cohen fan, there’s much to admire and it’s definitely a “Cohen” film, but if they’re not your cup of tea, don’t necessarily let that put you off – this is a far more “mainstream”-feeling movie with a more accessible structure, plot and storyline than much of what has come before.

Back home after the flick I caught up with a friend who I’ve not seen properly for far too long, which is always nice, although we could only squeeze in a quick hour before I had to grab K from the train, change hurriedly and pick Dad up for a trip to see MK Dons courtesy of Clydesdale Bank.

It was the first time I’d been to Stadium:MK and I have to say I was mightily impressed.  It’s a lovely stadium and the pitch was immaculate.  The game was pretty good, too – entertaining and interesting to watch the way the Dons play under Di Matteo, although with the final score resting at 2-1 to Stockport after an own goal in the last minute, it could have been a better result.

It was interesting to reflect on the power of team support, though.  As a Saints (Southampton) fan, whenever I go to a game, I get incredibly involved and tend to scream and shout with the rest of them.  If we lose, I’m always in a bad mood for most of the rest of the day.  On the other hand, watching the Dons, who I follow and support as a local team, I wasn’t overly bothered by the result.  It was a strrange feeling of under-whelmedness, I guess, which I found intriguing.  Maybe if I watch more games (which, incidentally, I’d love to do) I would have more of an investment in the club and their results, but as it was last night was just a really fun, if slightly chilly, night out.

Monkey

What an awesome day today has been – one of the best since my transplant.

Today I achieved something I’d never have thought I could achieve and done something I never thought I’d see myself doing even before my transplant.

We had my Godson up for the day with his mum and dad at my ‘rents and another family of really close friends with two kids as well and we all traipsed across Willen lake to the high-rope course on the far side of the sports lake.

This thing is pretty epic – a collection of fairly challenging obstacles suspended around 20 feet above the ground on the first level, with an upper level twice that height.  All harnessed and hard-hatted up, we set off around the first level.

The interesting thing about the course is that it’s not really possible to get down once you’ve started, so by way of a tester they put the most intimidating obstacles first, so if you really, really don’t like it, you can turn back.  I must confess, halfway through traversing the 10′ wide section of climbing wall with the world’s tiniest footholds, I seriously considered it.

I’m glad I didn’t though, as the rest of the course was pure joy.  I only struggled at one point, which was a section which required excellent balance (not something I’m renowned for) and good upper-body strength (something which has yet to grace my new body).  With that out of the way, the rest of the course was *relatively* easy.

I was disappointed that the lower level required so much physical exertion that I didn’t have anything left in the tank to attempt the higher, more challenging level this time around, but it gives me a great incentive to build my strength and stamina back up and conquer it next time.

The final step of the course is a 50’ rope drop from a tower in the centre of the courses.  Hooked onto a decelerating wire, you step off a platform for a few moments of free-fall before the rope goes taught and the drum begins to slow you down, depositing you on your feet/butt at the bottom a couple of seconds later at a manageable speed.

Before my op, healthy or not, I wouldn’t not have dreamed of doing something like that in a million years.  To be honest, I’m still not entirely sure what possessed me to to it today, but I did.  I stood at the top, harnessed up and clipped on and wondered out loud what I was doing there before serenely stepping off the platform and dropping to the floor in a matter of seconds.  On the way down it was the most horrible thing I’ve ever done, but as soon as I hit the floor I wanted to go again.

Doing a course like that really rammed home once again the astonishing difference these new lungs have made to my life.  Even after completing it, I still had enough energy to go back to Mum and Dad’s and play in the garden with everyone, as we got through games of Butthead, Scatch and footie.  It’s an amazing feeling to finally be able to run around and play in the garden with people again.

I always said before my op that Transplant is a bit of a gamble – there’s no way of knowing how long it’s going to last for and what your quality of life is going to be like, but I said I’d be happy if all I got was an extra six months and the opportunity to play football with my Godsons again.  This weekend, as I ran and missed yet another perfectly weighted cross just wide of the far post, it occurred to me that I’ve now hit both of those milestones.  Everything I wanted before my transplant, I’ve got – I couldn’t be more blessed and feel more happy and content with my life than I do right now.

Transplant is amazing. Full stop.

Durham 2 Day 2

We wake pretty late – around 10, when my Tac-alarm goes off – and slowly grind to a start.  I didn’t sleep at all well, waking up pretty much every hour, so I’m feeling decidedly sluggish, although a quick shower kick starts me very nicely.

We head across to the house to see what we can help with.  K has been there ahead of me and is knee-deep in cakes, arranging a display of confectionery to make the least-sweet toothed person fancy a nibble.  All will be on sale throughout the after noon and, come 4 o’clock, all will have been sold and many eaten.  Not least by K.

I am put to work on various bits and pieces to do with the silent auction and raffle, both of which will be running throughout.  A silent auction, for the uninitiated, is an auction in the traditional sense, but instead of having an auctioneer at the front of the room reeling off the prices and bids, each lot is given a piece of paper on which you write your bid and then keep checking to see if anyone has out bid you.  The best thing about silent auctions is that they can run a lot longer than regular auctions without really winding people up – especially the people who aren’t interested in bidding, for whom a traditional auction is the worst kind of dull.

After almost an hour of beavering away on whatever I’m set-to by the awesomely organised and surpringsly-not-in-the-least-bossy Lucinda, CF-mum and helper-in-chief to Suzanne, the lady-of-the-house who appears to currently be engaged in doing absolutely everything all at once, I have to scurry off to make myself look presentable for the incoming hoards.  I feel somewhat ashamed that the elite team of ladies have been working away since goodness-knows-when (certainly before I was awake) and my little contribution adds up to little over an hour’s stuffing things in envelopes and putting things on tables.

Still, take myself away I do and smarten myself up.  I find K knee deep in hair-product getting her new ‘Do to behave (which it does, and beautifully), slip into my posh frock (wait a sec…) and head back over to the house to be there when the throng arrives.

To my immense surprise, said throng is almost perfectly on time.  I had this crowd pegged as the fashionably-late  sort, but not a bit of it.  On the dot the majority of them came steaming in through the gates (yes, they have gates…!) and parked up in the courtyard (which you’ll remember from yesterday), unloaded themselves, their friends and – occasionally – their babies, and headed up into the house.

Once they’d all settle into the food service (aha – captive audience…), Stephen kicked things off my introducing himself, the idea behind the marathon and the reasons he and the rest of the team were involved.  Then he introduced me (and I’ll forgive him the “brave” comment purely because it’s the only foot he put wrong the whole time I was there…) and I was left to fend for myself in front of 2 rooms full of 100+ ladies (I didn’t count because then I’d just have got all wound up about it).

When I speak in public, I tend to talk without notes.  I usually know how I’ll start and I like to plan something punchy to end on (although Stephen stole the “downhill” joke from me in his intro, so that was that scuppered), but the rest of it is left up to the mood of the room and the feel of the day.  What that mostly means is that I often talk for 10-15 minutes and finish off having absolutely no idea what I’ve just said.  You’ll have to talk to someone else who was there to find out if I was a) interesting or b) any good, but I was happy enough I hadn’t droned on for hours nor been too deathly dull, although one can never tell.

Managing to get myself some lunch afterwards, I got a few appreciative nods and comments from people, which was good, and the silent auction seemed to start to rattle along a bit after in-speech plugs from Stephen and I.  Unwinding from the talk and chatting to the guests, it was good to hear a number of people being educated for the first time about CF – although it’s hard to imagine that there’s anyone out there who’s not heard of it, the truth is it’s rarer than a lot of conditions.  The advantage of introducing it to people for the first time – especially at a fundraiser – is that they often want to do something immediately to help out.  When you combined the charitable urge with the enormous efforts the marathon team are putting in, I was hopeful we’d give the team a decent boost to their sponsorship coffers.

I can’t express my admiration for these guys enough.  Not only have they completed other marathons together, they are now working as a team to meet the challenge of the world’s highest marathon – a feet so insane and counter-intuitive that I simply can’t contemplate it.  And they’re doing it all – off their own backs – to raise money for the  CF Trust and help them pursue their gene-therapy trials in the search for effective treatment and – one day, maybe – a cure for this horrible disease that takes too many lives.

I’m one of the lucky ones who’s been given a second chance at life – a second crack of the whip.  There are still too many children and young adults who only get the briefest, quietest crack and who we lose every week.

Please, please, if you are as inspired by their efforts and their self-lessness as I am, if you are even remotely touched by their attitude and sense of adventure, if you have any concept just how hard a marathon is, let along one at the base of the world’s highest mountain, go to their Just Giving page and leave a donation – it doesn’t matter how small, every tiny bit counts.  And if you know any benevolent marathon runners, pass on the link, let them see how insane it is for themsevles and get them to leave a donation , too – www.justgiving.com/THCF

At the end of the afternoons activities, having drawn the raffle (and walked away with a food mixer and Christmas hamper!), closed the silent auction and totted up cash donations through tickets, raffle and cake sales to inexcess of £2,300, plus cheques totalling more than £1800 and over £3000 in auction lots, I was well and truly shattered.  Surpsingly so, in fact, but I think the combination of a bad night’s sleep, adrenaline and nerves from the talk and being on my feet for almost 5 hours straight had taken their toll and I needed a kip.

Excusing ourselves in the middle of clear up (here comes the guilt again…), K and I headed up to our room and laid ourselves out for an hour to recharge.  When I woke, I plodded back over to the house and met up with the rest of the marathon team who had joined remains of the day (with the exception of Jodie, who couldn’t come for cross-infection reasons with me).  Both Guy and Barry are exceptionally nice blokes and seeing the hilarity as they tried on some of their cold-weather mountain gear and their thermal sleeping backs and blow-up matresses almost made me wish I was going with them.  then I remembered they were running a marathon on Everest and the urge miraculously disappeared.

In the evening, K and I took ourselves off into the centre of Durham (thanks to Alex’s wonderfully kind taxi service) for a nice meal between the two of us, followed by a walk up to the Cathedral to wave at Castle.

When we got back we sat and chilled with Family Cronin for a while, catching up on the day’s gossip and chatting about all sorts of various disparate subjects from the Mac vs. PC debate to modern horror films and shooting stage plays.

By the time I’d got to the bottom of my beer it was pushing 11 and I was acutely aware that everyone had things to do tomorrow, not least the two of us to make our way all the way back down South.  We were already imposing on the family a day longer than we’d expected to (after I realised the inherent foolishness off trying to drive home from the party in the afternoon as tired as I was), so I wanted to inconvenience them as little more as we could manage.

We headed back to the room, brewed a cuppa, sloped into bed and I don’t know about K but I was asleep within minutes of hitting the pillow.

Family firsts

Today I saw my Gramps for the first time since my op – he’s up visiting the ‘rents for the weekend and K and I stopped over for the afternoon to catch up. It was brilliant to see him again – after quite a long while, too – and he was suitably impressed with my turnaround from the last time I saw him. I love to see the look in people’s eyes when they see me for the first time since the op; it’s a wondrous mixture of the most complex emotions, with happiness and relief dominating.

This afternoon was not a great one, sporting-wise, which makes it lucky the rest of the day was so happy and pleasant.

First up, I arrived at Mum and Dad’s in time to sit and watch the Saints drop miserably out of the FA Cup to the mighty Bristol Rovers… they of an entire footballing division below us. Not that the difference in league standing made an impact on the game, since the majority of the Saints team (ok, the entire Saints team) completely failed to turn up for the match anyway. Maybe they thought they were playing Bristol City instead.

Following that disappointment, we hastily beat a retreat from the sofa to the pretty little village of Olney, where we took my Gramps and his lady friend for a nice afternoon stroll around the little boutique shops and stopped at a perfectly quaint little tea shop for afternoon tea and teacakes and crumpets – incredibly refined even if I do say so myself.

We found a beautiful little gift shop there, too, a real little gem, with sparkling jewelery which attracted the magpie-like K and some lovely little tokens and miniature statues and the like.

We eventually wandered ourselves back to the car and back to the ‘rents just in time to sit and watch Man Utd demolish Arsenal. Felt very sorry for K – being an ardent Gunner – but was remarkable to watch. And Dad and I did enjoy making the most of it because, let’s face it, K gets enough comedy mileage out of our following Southampton, so it’s only right for us to take advantage while we can.

We then settled into a lovely evening’s roast dinner (I guess Mum got confused and thought it was Sunday…) and chatted about all sorts of weird and wonderful things as we tend to do when we get together as a family.

It’s been a lovely day seeing Gramps again, going out for a stroll around a small town with him – something I’ve not been able to enjoy for some time, like so much of what I do these days. The firsts are stacking up so fast I keep thinking that I must have run out by now, but then another will pop up and remind me how well I’m doing and how great this new life is.

First day back

First off, I should quickly clear something up: when I say I’m “home” what I actually mean is I’m back at Mum and Dad’s (the ‘rents).  While this is, in a very real way, “home”, it’s not – technically – “home” as in sleeping in my own bed on my own pillows and waking to my own view.  Luckily for me, I am still managing to wake with the wonderful view of my darling K beside me, something which I’ve had to struggle without for the last 4-and-half-weeks.

Today has been the most wonderful day – surprisingly mundane, but it’s surprising how mundane takes on a whole new meaning when you’re kicking around at home with new lungs.

I was completely thrown this morning when I had to get up to go in to Harefield.  I’m so used to working out what time I’m leaving then working backwards through nebulisers, physio, breakfast, meds and extra time to get dressed, washed etc.  Last night I sat with my alarm before me and realised I had no idea how long it would take me to get up and out in the morning.  Wash… Dress… Breakfast… Tablets… Leave.  That’s, what, 45 mins max?  I’ve NEVER been up and out of the house in 45 minutes.  It’s usually at least an hour-and-a-half.  Mark that down as one more surreal post-transplant experience.

We rocked up on E Ward for 9.30, saying a cheery good morning to a couple of my favourite nurses, and promptly had my bloods done.  It was a bit of a wait to see the docs, who were on their rounds when I turned up and we had to wait for them to get to us, but when they did they were happy enough that I not only looked, but still felt well.  They sent me toddling off home again, to return tomorrow, and we were back home again by 12.30pm after a torrid journey back up the M1 (bad choice Dad…).

No sooner had we got back than my Bro rocked up to start his Christmas break from Plymouth and it was bacon sarnies all round to celebrate.  It was so unbelievably normal it was almost weird.  Get your head around that one!

As bro popped off to collect his sporting buddies for their weekend’s festivities (of which I plan to be a part next year), I decided it was about time I tried my new lungs and strengthening legs out and took myself off for a walk around the block.  The ‘rents couldn’t help but join me as I positively marched myself round the block, doing a circuit round behind the house in about 5 minutes, something which took me at least 10-15 last time I did it, and that was nearly a year ago, since when I’d not even have contemplated it.

By the time we got back, including having a quick welcome home chat with the neighbours, K had arrived back with Cliff and Dazz, our very good friends, who stayed for a chat and a cuppa.  Eventually, we managed to pack them both off, Dazz needing not only to pack for his holiday, but also to finish his shopping for skiing gear, visit relatives and catch some serious Zzz’s before his long drive North – all in the space of 3-4 hours.  Not the most organised of our friends is our Dazz.

When they’d gone, I heeded my doc’s advice not to do too much and took myself off to bed for a while, waking after an hour or so feeling slightly cloudy headed, which told me, like it always does, that I’d slept well and – honestly – would feel a whole lot better once I’d woken up.

Sat and chatted to Mum in the kitchen while we prepared a fruit basket for the ward staff to take in tomorrow – fruit being the antidote to all the cake and chocolate they get given at Christmas time: I don’t want to be responsible for staff going off sick with massively high cholesterol.

Plonking myself in the lounge with Mum’s flashy new lap-top, I then settled in to spend an afternoon going through my Hotmail account and cleaning it up and reading through the 3 pages of messages left for me on my Facebook page.  Crazy.  I can’t believe the amount of love and support I’ve had over the last month – it’s left me as close to speechless as I ever get.  You know, like, 50 words a minute rather than 100.

After dinner S&S came over for a game of Hollywood Buzz (thanks Suze and Gary!), which I cruised, naturally.  We were going to be joined by another friend from Luton, but sadly as I directed him to the house we established he had a cough and I had to turn him away, which felt horrible, but it’s really, really important for me to quarantine myself at the moment.

So instead K and I settled on the sofa to watch the final of Strictly Come Dancing, which entertains me more than it should do and I find myself ooh’ing and aah’ing at the lifts, holds and twirls like someone who actually knows what they’re watching.

It’s been the most wonderfully straight-forward, mundane day and I hope there’s many more to come in the next week or so.  Thanks again for all your support and love you’ve sent, through the blog, Facebook, email and cards.  It means the world to me, and it is still helping me through the tough parts of everyday.  And don’t get me wrong – there are still the tough parts to get through.  But each day I get stronger and each day the tough parts get a little easier.  Sooner or later, the tough parts will be so brief I’ll hardly notice them, and the good times will start to roll with a vengeance.

Oli gets wireless (or near enough)

In case you haven’t read it, please check out the ‘A message from your host’ post which is before this, it’s a very special post that I know you’ll want to read.  I wasn’t keen on writing over it but I’ve had my orders to keep everyone updated and now Oli can run faster than me I’d better not make him grumpy!

Today has been anothr great day, I really can’t think of a time when I’ve been as happy as this, it’s the best feeling in the world. 

When Oli’s Mum and I got in to see him this morning we found a sad and tired Oli who didn’t really want to play this game anymore, I think the night on dialysis hadn’t helped him get any sleep and the extra fluid around his body (all 8 litres of it, not nice) was making him so unformfortable that he didn’t know where to put himself.  Oli’s Mum got sent off pretty quickly to go on an apple juice hunt and I just sat myself near him, at the end of his bed.  After a couple of quiet minutes he looked at me and said “I need to pull myself out of this don’t I?” and we came to the decision that I was going to put some music on the cd player (thanks Kate!) and Oli was going to sit up and be more positive.  From that moment on Oli’s day just got better and better, and better!

The Big Head Dude Doc Man (who needs capital letters because he is that important) came in to see Oli and decided that the majority of his remaining wires, tubes and drain should be taken off.  We were so happy!  The central line, which has 3 or 4 lines in it and is in no way connected to the London Tube, in Oli’s neck has been removed and instead they have re-accessed Oli’s portacath which will be used for his IV drugs.  The arterial line (I don’t know what this was for, I think it may have been blood gases) from his groin has been removed, the final chest drain has been removed and he is no longer on the cardiac monitor. 

The reason for all of this, apart from being well enough to be taken off of everything, is because of all this nasty extra fluid.  The overnight filtering has really helped, last night 2 litres of extra fluid were removed by this dialysis machine, but the body will be able to shift the fluid much more easily if Oli is able to do more physio, which in turn is easier to do when wireless.  The lines in Oli now are the port when it’s in use, the vas-cath (in his groin where he connects up to the dialysis machine at night) and his catheter.  Hopefully the vas-cath will come out tomorrow and once the extra fluid comes down and they are needing to check his urine output so much, the catheter will also get removed.  I’m not sure how long they will give Oli the IV drugs but at some point they will stop using his port and give him oral antibiotics instead.

This evening Oli doubled his 40m record.  It’s so amazing!  I wasn’t there for it but Oli phoned me to tell me and the joy and emotion in his voice made me want to cry with happiness – this is someone who 3 weeks ago was really quite poorly and got out of breath getting out of bed, this really has been the gift of a lifetime for Oli, and for us.  Oli was telling me how he walked from his room to the end of the ward and back and said that the nurses were beaming at him and the kitchen porter guy (official title, I’m sure) was cheering him on and telling him how good he looked!  Oli also said how he met a nurse he hasn’t met yet, she asked him what he’d had done and that made him realise HE hasn’t told anyone yet – lots of people know but not from him, for the first time he said ‘I had a double lung transplant nearly 3 weeks ago’ and when he looked over and saw his nurse’s face, Oli could see exactly why this nurse did his job, Oli said it was such a picture.

This evening Oli was able to spend a lot of time with his Big Bro who has come up to see him for the weekend, this is the same legendary Big Bro who gave the butt kicking last week.  Wow, must this be a different Little Bro he is seeing!  Following his legendary form, Big Bro has set Oli a challenge that has been agreed to (witnessed by Oli’s Dad, so no getting out of it).  On April 10th 2008 Oli will run alongside his Bro and his Bro’s marines for the first mile of the CF Trust’s Tresco Marathon.  How unbelievable is that?!  I’m thinking that all those who promised to wield big sticks at the previous exercise programme might need to get those sticks out again!

Bring it on!

Coming? Going?

I’m not really sure at the moment, if I’m honest.

My body and my mind are all over the place and I can’t decide what to do with myself from hour-to-hour, let alone day-to-day.

Frustration is playing a key role in whatever I am doing at the moment, though, driving me to distraction.

For the last week or so I’ve been sleeping incredibly badly – not being able to get off to sleep and then waking every hour or so until the early hours when it tends to increase to to a whopping 20mins of sleep at a time.  It’s been driving me bonkers.  Also, of course, it’s left me with very little energy to do anything with myself all day.

Once I’m tired, I’m also absolutely horrible to be around.  I’m sure most of us aren’t at our best when we’re lacking a bit of shut-eye, but I know that when I’m sleepless I’m at my very, very worst.  For all the days K’s spent laughing at me and with me when we both get the giggles when we’re tired, I’m sure she’s now found out that when I’m really tired giggles are nowhere to be found.

Lack of sleep also causes more and more worries as well.  I’m well aware of the fact that it’s when our bodies are at rest that they repair themselves and set themselves up for another day.  As you’ll know from the more recent blogs, I’m also increasingly aware of the frailty of my body and the desperate need it has to keep itself ticking over.  Missing out on crucial rest time bothers me big-time because I know how precious a resource it is.

More than all of that, though, the more tired I am the more frustrated I get with myself and with the things around me.  My energy levels are so low that doing anything other than sitting and surfing the ‘net causes me to feel like I’ve been running around a football pitch for hours.  Without the rest it needs, my chest will start to moan and complain if I do much more than make a cup of tea and I can really feel my auxiliary muscles working overtime just to keep the oxygen flow going through what’s left of my lungs.

I’ve been struggling for the last couple of months with pain in my back and neck where the over-worked auxiliary respiratory muscles are tensing up and causing all kinds of different, unpleasant aches and pains, which in turn makes it harder to sit properly or carry myself as I should, which only then serves to exacerbate the problem with my back and neck muscles.  It’s the very worst of vicious circles that no one seems to have identified a way out of yet.

There are so many things I’d like to be doing with myself at the moment, projects I’d like to be working on, writing I’d like to be doing, but it’s the most I can do to get through a day without going mad at the moment.  My brain certainly doesn’t feel switched-on enough to achieve much beyond the occasional email.  I don’t think I’ve had a creative thought-thread for a couple of weeks now, which really gets me down.

Still, it can’t all be doom and gloom – there’s good things in the world. (Best not get on to last weekend’s sport if I’m looking for sunshine, eh?).

My bro was back for a couple of days over the weekend, which was really nice – he’s away so much doing this, that and the other that it’s been really good to see him and catch up a bit.  He seems really happy in what he’s doing, which is so good to see.  I get a real kick out of seeing my family and my friends doing things they really enjoy – I suppose it’s a kind of vicarious pleasure that I’ve lived with for a while now and I have always felt it most strongly for the things my bro gets up to.  If he’s happy, I’m happy for him.  And he’s always happy, because he’s that kind of bloke.

I know I could be doing a lot worse, too.  My chest isn’t 100% – an understatement, I suppose, of rather dramatic proportions, but then everything is relative – but it’s holding on there for the most part.  It could be much worse and I could be properly laid-up, which I’m not, so I should really not be complaining too hard.

I suppose that when frustration bubbles up it’s often hard to see the good for the bad – the wood for the proverbial trees, as it were – and it’s all too easy when tiredness attacks to let it drag everything down with it.  Positivity is a precious resource in and of itself, so I suppose what I really need is just the energy to go and mine some more of it.