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Crikey – that was all a bit of a roller-coaster, wasn’t it?  I’m starting to feel like I slightly over-use that metaphor, but it I’ve now discovered it’s very definition.

Still, finding myself sat back in the bathroom where I was relaxing when my mother burst into the room, towel in hand to pluck me from the bath and whisk me off to Harefield not a month and a day ago brings a certain surreality to the whole thing.  Not so much closure as openage: the start of a new life from the page I left the old one.

As Kati said in her last entry, I’ll be finding myself running to and fro to Harefield every morning for the next week or so for bloods and a doctor’s consultation, but it’s a small price to pay for being out of hospital and home for Christmas – not to mention, as Anna pointed out in the previous comments section, sleeping in a bed with a duvet!

It’s been a crazy last 4-and-a-half weeks, and I’m not out of the woods yet, or fully recovered by any means, but I’m home, I’m happy and I’ve got my family and loved ones around me and that’s all a guy can ask for.

I can’t begin to thank each and every one of you for the support you’ve given me through this whole wonderful, trying, exceptional, terrifying, beautiful ordeal.  Words cannot express the strength and resolve you have all given me with your prayers, thoughts and words of wisdom and cheer.  You have all played just as big a role in my recovery as any medical science has.

I fully intend to make the very most of my new life.  I want to be able to say that if my donor’s family knew who I was and what I had done with my new life, they would be proud of me and comforted to know that the death of their loved one wasn’t wasted, but helped to save and transform a life which meant something.

To my donor: I can never thank you face-to-face, but if you’re there and you’re watching, be confident that you have given the greatest gift anyone can give and that I will not waste a second of the second life you’ve given me.  God bless you and keep you in eternal life.

Yaaaaaaaaaaaaaaay!

Oli’s docs have just seen his blood test results from today and told him that he’s alllowed home this evening!  He has agreed to come back every day for further blood tests and needs to take a bag every day in case he gets re-admitted but I think he’d agree to almost anything in order to spend one night away from hospital.

I’m so hugely happy for him!

Oli has now stayed in 4 rooms within the transplant ward.  He has been in a high dependancy room, a not-so-quite- high dependancy room, a goodbye-you’re-going-home room, and as of half past 8 this evening an unlucky-you-might-be-here-until-Christmas room.

The past two days haven’t been quite so bad for him.  Yesterday I went to see him along with two really good friends of ours and we merrily chatted for hours and helped Oli almost forget that the day sucked because he wasn’t well.

Today he was definitely starting to struggle with the idea that the goal of going home is getting harder to reach.  One of the highlights of his day was being interviewed by a lovely lady from the Daily Mirror – the article will be in tomorrows (Friday 21st Dec.) paper.  I repeat in case you weren’t paying attention – BUY THE DAILY MIRROR TOMORROW BECAUSE OLI WILL BE IN IT.  I think that’s clear now, don’t you?

This afternoon became a bit of a battle against nausea and tiredness.  He’s had a rough couple of days, along with the physical presence of the latest infection, he has also had to use a lot of mental and emotional energy in trying to keep positive and not get too upset about staying in hospital. 

Unfortunately, no matter how many members of staff say that Christmas on the ward is fun, being part of Christmas on the ward is a big reminder that you’re not remotely well enough to go home.  Fingers crossed however, the decision to keep him in hasn’t been made yet and we still have a few days to get the infection under control and get Oli home.  It’s difficult to get into the Christmas spirit though.

As we left this evening Oli’s mood had changed again to being resigned to his fate, come what may.  Hopefully he’ll get visited by three ghosts this evening who will each help him find the fight to carry on.  I know it’s tough, I’ve been there, different situation but I’ve been in hospital over Christmas.  The big difference for Oli is that he still has a glimmer of light at the end of the tunnel which will lead him home for Christmas dinner.

Plus he’s already received the greatest gift possible so Christmas is already better than it was going to be.

Don’t forget to buy the Mirror tomorrow – you’ll get your first glimpse of Oli post-transplant!

Oli won’t be home this week, or in time for Christmas quite probably.

He woke up today feeling rubbish and with a temperature, gutted doesn’t even come close to how he’s feeling right now.  His doc saw him and was also gutted for Oli, especially as the doc said he had plans to send Oli home today – Oli didn’t really want to hear that.

Right now we’re waiting for blood tests and x-rays to come back before they decide on a plan of Oli.  In the meantime we have a very sad and poorly Oli.

I can’t think of a single thing to say or do to make him feel better at the moment, I’m just going to go to hospital and give him a big hug.

2 sleeps to go!

Oli’s coming home on Thursday!!!!!  small print – as long as nothing bad happens in between now and then.

Yaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaay!  I’m so excited, it’s going to be so wonderful to have him home and be able to chill out on our sofa and watch movies and drink tea!

Yesterday we had another great day together, my parents took me over to see him and the four of us went for a cup of tea in the League of Friends pavillion.  It was lovely and so normal just to be sitting and chatting together.  My parents then left and I stayed behind with Oli for the rest of the day.  Oli’s parents visited and then two of our bestest buddies came to see him and to take me home in the evening.  Throughout the day I just kept looking at Oli and seeing how happy he looked and how healthy.  We went to the canteen with the guys in the evening and it was almost normal to be sitting, having a giggle and a cuppa (only almost normal because a hospital canteen is never quite venue of choice to go with friends).

For the past few days Oli has had to put up with hearing nurses and doctors commenting on how he should be ready to go home soon, today they’ve finally agreed that Thursday is the day, hooray!

I can’t wait to have him home, it’ll be great to have him here as our nieces and nephews get excited as Christmas draws nearer.  We can share in the excitement for the first time in ages and Oli doesn’t have to worry so much about measuring his energy reserves or being scared that it might be his last.

I got a letter from UCL today, unfortunately I didn’t get in.  I’m a bit gutted but in the grand scheme of things we already have so much to be thankful for, I’m not going to waste time or energy feeling sorry for myself.  Nothing can ruin how happy I am that Oli is coming home x

Or lunch to be more precise.

It was awesome, so, so cool to get Oli out of the hospital grounds and back to normality.  It was unfortunate that it was a bitterly cold day but even that didn’t bother us today!  We went to a lovely pub, had lovely food, good conversation and generally a lovely time was had by all.  Oli is still frail but that is to be expected, even Superman needs time to build up strength from a life saving operation.

The last time we went out for a meal was my Dad’s 60th, almost a year ago.  Thinking back, that meal seemed harder for Oli to cope with than todays jaunt.  There are constantly so many things that are already improving his quality of life

Oli has done so well again today.  He really blew me away when I went with him on another physio session on the stairs.  I was walking behind him and the physio as we went all the way up in one go and all the way down in one go, I was trying very hard not to get in the way and just observe so it wasn’t until the end that I asked him if he realised what he’s just done.  Not only had he gone up and down the stairs a lot more easily than he had yesterday, he’d also been chatting the entire time – he hadn’t even noticed!  It’s things like this that make me stop and realise just how much his life has changed already.  I would never have dared to speak to him while he was slowly going up or down stairs, one step at a time, as I knew he wouldn’t have had the breath to talk back.  Today he was chatting away and didn’t seem out of breath at all.  Wow.

This has led me on to a strange pattern of thinking today as we are entering the realms of activities that Oli either hasn’t done for a long time or has never done.  When we got there this morning Oli was a bit down.  He said he didn’t know why but he felt ‘off’ and was a little worried about it, even though all of his levels had been checked and had come back perfectly fine.  It was then that I had to remind him of all the activity he did yesterday, activity he hasn’t done for at least months, if not more.  His body, apart from recovering from a huge operation, simply isn’t used to this level of activity.

I don’t know but I don’t think Oli has ever had a stitch from running, or had achy legs or sore feet.  It has crossed my mind that when Oli experiences these for the first time, particularly the running stitch, he could possible think something major is wrong and start to panic.

We have all spent so much time thinking about the great things Oli can do with his life now, we had overlooked the little, more unpleasant things he will inevitably discover.  I’ve also been thinking that Oli hasn’t had a 35/40 hour week, ever.  He’s going to find out that it’s tiring and not always that much fun.

This post is not meant to sound negative in any way, it’s just that for the first time tonight I’ve realised how little experience Oli has of the regular world.  He’s going to go on and do great things and experience things he never thought he would.  Along the way however, he’s going to go through some very hard times.  He will come out the other side and the triumphs will be that much sweeter because of it.

We have a long way to go and this year will be very hard but also very rewarding.  I think that the relationships he has with close friends and family will need to be very strong to come out the other side but if they survive, they will be that much stronger for having come through it.

That’s all got a bit deeper than I meant it too, oops!

Oli has also been moved to a different room now, he is no longer highly dependant and so is one step closer to home (hopefully!).  Oli’s Mum, Dad, Oli and I are all looking forward to a wonderful celebratory lunch tomorrow, I have to admit I am so excited, I might burst!  If you have a drink tomorrow, or even a cup of tea, celebrate with us and raise your glass to Oli as it is his first trip out since the transplant.  He is one awesome guy.

Oli’s walked up and down a flight of stairs!!!!  I’m not with him today and have no-one around to jump up and down with and scream in a happy girly way!  I am so proud of him!

He’s just called me and he walked to the foot of the stairs with the physio which is plenty far enough.  He did the first five steps and went to try the next eight.  He did the eight and figured he’d got that far and so should go for the final 5.  After a little break he walked all the way down, then back to his room AND then back to the bathrooms for a shower.  This is just fab, he has done so well today.  He said it was a lot harder than he thought it would be but is really proud of himself for achieving it.  I’m a just a big bubble of happiness right now and I’m so glad I can share it with you all! 

There is absolutely no way he could have done all of that three weeks ago, he is already leaps and bounds ahead of the poorly guy who was half looking forward to/half dreading the approaching Christmas.  No matter what happens or where we are, Christmas is going to be such a celebration of new life.

Have a great day x

Speechless is completely how I feel at the moment.  You are all the most amazing bunch of people and the messages you’ve sent Oli have been so wonderful and heart-warming.  These messages are so important for encouraging him and letting him know just how many people are sending love and prayers his way.

Today has been another fantastic day.  Oli has been introduced to the Little Blue Book (he’s assured me the little black book was thrown away a long time ago).  The LBB holds all the dosage detail of his medications which allows him to be in charge of what he is due and when.  This is a very important step for him as it is part of a checklist of things that he needs to be able to do before he is allowed home.  As a CF patient, Oli has been used to self-medicating for years, however, this is a whole new area for him.  Oli has to learn about the drugs he takes and needs to remember to take them at the right times and in the right dosages.  It won’t take him long as he is used to taking regular medication but the list of drugs is HUGE so he’ll need to be a memory man for a while until it becomes second nature.

Another awesome step forward came within the Doctor’s orders, Oli has been told to go out for a pub lunch on Saturday! Even as I write I am grinning stupidly from ear to ear!  It’s so odd to think how quick these things are moving.  It has been three weeks since the transplant and in so many ways it feels like longer as we’ve been through massive highs and despairing lows.  It’s so amazing to think that this gift has changed our lives so quickly and so wonderfully.  Oli is doing so well and is making great progress, almost hourly it seems!  If you haven’t already done so, please consider signing on to the organ donor register at www.uktransplant.org.uk.  If you have signed up, please talk to at least one person tomorrow about Oli’s miracle, Emily’s miracle (www.pinkandsmiley.blogspot.com), Peter’s miracle (http://waitingforthecall.blogspot.com) , James’ miracle (www.ox28.com) and the other miracles that are waiting to happen.  Encourage them to think about signing up, too.

You are amazing, hope you’re enjoying the ride as much as we are x