No-one knows you've been down that road

I've been quiet all this week because I've been sick for all of it. On monday night I was so sick in fact that while I managed to get a sick bowl in time it came out with such force that it sloshed out and on to my shorts. It was an absolute torrent principally because it consisted only of my liquid overnight feed, which I then had to stop. So I've hardly eaten all week and haven't even put the feeds on and as a result I've lost two kilos which is tremendously frustrating. I know I'll put it on again soon enough but it's so much harder and slower to put it on than it ever is coming off.

Still, I had an appointment with the respiratory docs who have confirmed that, even though I had lost that bit of weight, that my referral to the transplant team has now been sent so now I just have to wait to hear from them which will be in the next few months. Then I have to go down to Newcastle for a few days of extensive tests. This is actual progress after many months of waiting.

I can't wait to get down there.

All this frustration, I can't feed all my desires

Having spoken recently about the things I hope for my future I've come to the conclusion over the last few days that the thing I want more than anything else is the freedom to just get up and go for a walk whenever I feel like it. I've always been a great exponent of the benefits of walking, especially in the rain. I love going for a wander in the rain, there's a solitude to it based mostly on nobody else being stupid enough to be out in such weather. I find it just clarifies the mind which is most welcome when, like me, you tend to over analyse things. Nietzsche once said "All truly great thoughts are conceived while walking" and I can't argue with that in any way, although I'd have to concede my thoughts probably aren't as grand as Nietzsche's.

So my frustrations in life at the moment stem mostly from the lack of spontaneity. I can't do a single thing without a well formulated plan which has to involve at least one other person. I need to organise exit strategies from whatever it is I'm doing before I even leave the house too; I can't just stay out and do something else after whatever it is I've gone out for.

One thing I need to acknowledge is that I could do more if I let people take me out in the wheelchair but up till now I've just found it too frustrating that I can't do things under my own steam that I just don't want to do them with someone else pushing me around. I know that it's face-spiting nose-cutting on quite an impressive scale but the last vestiges of pride I have stop me from accepting that this is my lot and to simply make the best of it. I only ever use the chair when going to the hospital when it's just too far for me to walk even with the oxygen, and I loathe every second I am in it. It just doesn't fit with my idea of myself.

Away from that I've been very lucky in the last wee bit with visitors so my frustrations at being mostly housebound have been kept at bay. An old friend Jane from my time in Aberdeen came down to visit yesterday and I spent a good hour or so on the phone to my ex girlfriend Katherine last night. Both commented that I seem quite chipper and positive about everything. I think I am but it is certainly true that I am more so when I'm talking to people about things. They don't get to see the odd times when I am quite down about it all - I don't ever let anyone see that really and it usually is quite fleeting.

So high I just can't feel it

So today I went for a CT scan. I was mildly disappointed that it wasn't a contrast CT scan though - with it you get injected with contrast material before the scan takes place and it's a funny feeling. You feel a warmth coursing down your body from your chest. In fact before you get it the radiographer tells you not to worry as it when it gets down to your waist it feels like you've wet yourself, but without the cold wet shame that follows. I have no frame of reference for that I should make clear. Another step forwards anyway.

When I got back I lay watching the cyclists on the Tour de France on telly navigating the Pyrenees and I let my mind wander, as I do occasionally, towards thinking about what I can hope to get from a new set of lungs. Prior to my bone marrow transplant I was quite the sporty type taking part in regular games of football, badminton and squash and occasionally going cycling. I used to do a lot of cycling years ago when I was an undergrad and I had to cycle to get to my part time job. After the transplant I was unable to do any of these things and I'd come to terms with that.

Now I wonder which of those things, if any, I'll be able to do if it all goes successfully. I'd be happy with any of them but even if I can't do any of those sports the one thing I'd love to be able to do again is walk to the top of a mountain, regardless of how slowly I have to go. Previously there was so much damage to my lungs that I wouldn't have been able to breathe at altitude due to how thin the air would be so it was a complete non starter but theoretically a new set will allow me to do that again. Perhaps not at Pyrenee level maybe but even just a Munro or two in Scotland once I got fit again.

Is it mental to torture yourself with things that might never be or is it good to set yourself goals? I've never came to a real conclusion about that, but the fact that it's only something I allow myself to dream of very rarely probably tells its own story.

You better say your prayers, or whisper to the wise

It feels rather strange writing about things that happened nearly a decade ago but in lieu of anything interesting happening in my daily life at the moment I'm going to carry on in the same vein.

It appeared that the treatments I had been given were being effective if the side effects I was feeling were anything to go by. I rapidly became completely bald, my fingernails were in tatters and all the mucous membranes that make up the whole digestive system had gone which meant that food wasn't much fun for me at all. My mouth was terribly ulcerated so I couldn't deal with anything other than soggy cereal or jelly sweets - hardly the basis of a sensible diet. Because of this I was losing weight rapidly so the decision was made to give me supplements to try and boost my weigh again but I couldn't really deal with them because they all taste foul so we then moved on to the insertion of a naso-gastric (NG) tube. It, as the name suggests, goes up your nose and down into your stomach. It's not the most fun you'll ever have getting it inserted but the benefits of it are massive, not least of which is that it allows the disgusting feeds to bypass your tastebuds.

My entire digestive system was in trauma though and absorbing food into my bloodstream wasn't really terribly effective and I was left with what my consultants creatively called torrential diaorrhoea. Nobody wants to know this stuff really I'm sure but it's such an integral part of the story that I can't really leave it out. It was terrible. My body felt like it was getting rid of everything I had eaten in my whole life. What it was actually doing as well though was evacuating all the now dead bone marrow as well.

All my blood counts were in the dangerously low region but the one that was causing most concern was my platelets level. I had to have transfusions of platelets because I had recurring nosebleeds that couldn't stop. Platelets allow the blood to clot so are pretty important in healing and I just didn't have enough of them so I needed an outside supply. I only needed blood transfusions a few times to increase my red blood cell count but I probably had about a dozen platelet transfusions.

Back in the days when I was healthy I used to donate blood regularly and occasionally, when there was a desperate need, I would give platelets too. I hadn't donated in years due to having a tattoo done and I've always wondered how much earlier they could have found my leukaemia if I hadn't got it done and had continued donating blood. I know the white blood cell count was so high that it could have been any time in at least the previous six months to a year. Imagine how different my life would have been if I'd have found out before I moved away to Cardiff.

I'd never have met all the amazing friends I did or had any of the wonderful experiences I had in the year and a bit I lived there. I'd never have found out a lot of what I did about myself in that time either. I thrived there.

The Cancer was always going to show up at one point but I'm glad I was away from home when it did. It gave me space I needed to come to terms with it - I would never have got that at home. Now they all know when I just need to be alone and they're brilliant at recognising it, even my eldest niece and nephews know when Uncle P isn't right and leave him be, but back at diagnosis time they couldn't possibly have been like that. It was too much of a trauma and they wanted to be around me as much as possible. I understand that completely but I wouldn't have coped as well as I think I did if it weren't for the space between us. I plough a lonely furrow when it comes to dealing with a lot of this stuff .

Never a frown, with golden brown

Back in 2001 everything was feeling rather fuzzy and the days began to segue into each other thanks to the overwhelming powers of diamorphine. I was conscious almost all the time as I hadn't quite got the hang of sleeping upright (to prevent acid running up into my throat) and I was starting to have rather graphic nightmares. I normally don't remember my dreams but these were so very vivid and each and every one of them involved either a friend or a family member dying in really grisly circumstances. I care not to repeat them but suffice to say sleep didn't come easily for me the whole time I was on it.

So I was sleep deprived and basically off my face on drugs so anyone visiting me or phoning me got a very weird version of me to deal with. Trying to think about it now it all seems a bit foggy and I know I found it incredibly frustrating not really being in command of my thoughts but I tried desperately hard not to let it upset me. It only really upset me when circumstances dictated that visitors I was expecting couldn't make it. I remember Sam being unable to make a trip through due to snow which annoyed me because any other time she had visited there had been loads of folks around. She was always someone who I could tell how I was really feeling but I always chose not to when other people were about. Some other visitors had to miss out because they were infectious as well and that is always a blow, even though you know it's for the best.

In those first weeks post transplant there is a strict two person per room visitors rule, although in there they can come and go as they please during the day. I had a regular stream of visitors which was fantastic and they all offered something different for me. Some want to know about everything down to the most minute detail and some want to know nothing apart from the big picture but most reside somewhere in the middle of that and you have to find out where each one lies, which kind of keeps the mind active.

I struggled to concentrate the whole time and found it incredibly frustrating but I found that reading court room dramas (courtesy of Dave) were at just the right level of interesting to give me a bit of enjoyment without the frustration of being too difficult to follow. Thank God that boy buys his books in airport bookstores I say.

They say that pain reminds you that you're alive. Having in those days felt as much pain as I had in my life followed by the greatest numbness of my life as well I have to say that the person who comes up with effective non-opioid analgaesia will be the most popular person in the history of medicine. A pain relief that doesn't involve all the side effects of morphine and its derivatives will be a huge advance for hospital patients worldwide.

We studied industrial attempts to design such molecules in one of our courses in Medicinal Chemistry at Uni and it is still the Holy Grail of the subject.

I've not even mentioned stopping taking it yet. That's a whole other issue altogether.

We're dreamers in castles made of sand

I've had a lot of visitors over the last week. As well as some friends from my time in Liverpool and Belfast I have had wider family coming to visit and some old school friends, including the oldest friend I have in the world.

He came round to make sure I would be attending his upcoming nuptials. I explained that I'd love to be there for the whole shebang but I am unfortunately time limited by the oxygen cylinder's capacity so I had to decide whether to go to the formal ceremony or to the reception later. We talked about it and he made it clear he wouldn't be offended with either choice so we decided that there was more fun to be had, and more chance to talk to all the people that will be there that I don't see anywhere near often enough, if I go to the evening do.

So now I'm quite excited about getting out and going to it but am conscious that it will be frustrating for me. While in the last few years my breathing had been poor I could still manage the odd dance at a wedding, but this time (even with the oxygen) I can't entertain such ideas and that is quite frustrating for someone like me. That frustration will be worth it though I'm sure as it is guaranteed to be an absolutely fantastic do.

As you'd expect my mind then turned to whether I'll ever be the person getting married and, as you do, I cast my mind back to previous relationships but I'm still of the opinion that each of those break ups were the correct decision regardless of which of us it was who took it.

It's easy to romanticise when looking through the retrospectoscope especially the further away the events are in your history. It's not my place to talk too much about those relationships that defined my life really as they're not just mine to talk about but I will say that I've been in love 3 times to this point but only ever thought of marriage as a prospect with one of them. The first one was when I was young enough to fall hopelessly and giddily in love with Eileen; the second was more considered especially because Sam hated me at first and the third was when I had decided, after years of taking too much care with my feelings, to take a risk and just open up to Katherine. Apart from all having at one point been in love with me they are all very different people but one thing is true of them all - they are all smarter than me.

With each of them I left myself wide open to having my heart stomped upon and with each of them I was left with a few such scars, many of which though were of my own making. The middle one of these three was the longest and it's the one that I was most guilty of taking for granted and I didn't just let it slip through my fingers, I actively forced it.

Having said that I have always been a little glad that I split up with Sam when I did. Of course it would have been nice to have someone I could completely rely on when undergoing all the treatments I was going through back in 2001 but I'm really glad that she didn't have to go through it all. Having remained good friends (as I have with all of the three) she suffered plenty throughout it all but it would have been so much worse if she had had to be with me for all of it.

I've never taken too well to having someone else in my life when things aren't great as I just beat myself up about how much they're having to deal with. I know it's ridiculous as if they love you then these things don't ever enter their mind but it preoccupies mine. That was why there was such a long period after my transplant where I stayed resolutely single. That was until, precisely 5 years to the day after splitting with Sam, I met Katherine. My first words to her were actually quite insulting but she actually seemed to like someone having the gall to talk in such a way. Soon after we started going out but I struggled with letting her see me on the occasions that I was unwell but eventually I had to allow her to care for me. She would try and comfort me in those nights when I was beset with chest infections by simply holding me while I was hacking up my lungs and I have to say it gave me great solace.

The things is though I knew there were things she wanted to do in her life that involved a level of activity that were beyond my already damaged lungs. For the filthy minds out there she is a climbing and hillwalking sort and I would have liked nothing more than to be able to join her in those exploits but I couldn't entertain them and I have always wondered if the fact I couldn't do all these things that were such a part of her life had a part in our break up.

Now you'd be forgiven for thinking that such events might make me cynical but my attitude has always been 'sing like no-ones listening, dance like no-ones watching, love like you've never had your heart broken' and I don't believe I should ever attempt to enter a relationship with the worry that I might be leaving myself open to hurt. I've had it before and I always get over it anywyay. Lauren Laverne put it best when she sang 'You've got to risk your heart for love to find you'. Finding love has never been much of a problem - my problem has been keeping a hold of it. If my friends can manage it though I know it is possible to do it, I just need to be lucky. I'm looking forward to my next attempt already.

It's a new dawn, it's a new day, it's a new life

The strangest thing about transplant day was just how underwhelming it actually was. Well for me anyway.

It's only the donor that has the surgery to remove a litre of their bone marrow through four holes in their hip bones. The patient receiving it simply gets it in a drip bag for hanging and letting it slowly work its way into their body. It doesn't even require a pump, gravity does it.

I was acutely aware that this was the most important event in my life yet it felt remarkably prosaic. I don't know what I expected to be honest but something as life changing as that should really come with more of a fanfare than a nurse saying 'Aye your new bone marrow is just coming now so we can put it up in a wee while' like it was the most normal thing in the world. Of course for them it is something that happens regularly so I don't know what on earth I was expecting.

As soon as I knew that though I went along to Clare's room where she was recovering and got her to come along so she could see it. Obviously for her it was a bigger deal as she had just gone through surgery and she was a little surprised to see this litre bag full of stuff that had come from her. We amused ourselves greatly at the fact that there was too much fat in the bone marrow and it kept blocking the plumbing to give me it - there's not an ounce of fat on our Clare you see so finding out it was all hidden on the inside was quite a revelation.

I've been avoiding saying too much about the donor side of things as I don't like speaking on Clare's behalf about it. I might ask her to write down her memories of it if she's up for it. I do know that she found it quite difficult being away from her daughter, who was too young to be allowed into the ward.

So even though there was a distinct lack of fanfare for the big event itself this was still the single most important day of my life and lying trying to sleep after it was difficult, even accounting for my final dose of radiotherapy which had knocked the shit out of me. I couldn't even face getting up in the night to go to the bathroom so just had bottles at the side of my bed. I was on a fluid chart so would have been peeing into bottles anyway so I didn't see the point in making the mighty trek across the room to the toilet.

It was in the next few days that the side effects of all my treatments started to make themselves known. I mentioned before about how it is the fast reproducing cells in the body that are victim to chemo and radiotherapy and it is these that started to die off. I first noticed it with the mucous membranes in my mouth and nose so I started using mouthwashes to stave off infection and to numb my mouth from the pain. Soon after that I realised how far those mucous membranes go when the lining from my oesophagus died off, which meant that the acid from my stomach could, if I were lying down, run all the way up to the back of my throat and burn the flesh in the process. It is an incredible pain - nothing in my life has ever come close to it and there is nothing to do to stop it except pain medication and learning to sleep upright.

That led to my first fight with a doctor though. I first felt the pain in the middle of the night and the on call doctor came to see what was going on. He, and I do understand this, wanted to know what was causing it so he could deal with prevention rather than just treat to mask the symptoms, but the more experienced doctors know that you can't stop it and just have to treat it. All the nurses told him so too but he wasted a couple of hours while I was writhing in agony before finally prescribing Diamorphine to just block the pain out. If ever anything goes wrong when you're in hospital you want it to happen in daylight hours so you don't get saddled with the on call doctor.

I also started to lose my hair then and no sooner had I found the first of it on my pillow than I asked Collette, one of the nurses, if she would just shave it all off. She hadn't been in that ward long and hadn't done that for anyone before so wasn't terribly keen but I persuaded her and had it all taken off. Of course there were still the roots of the hair in place and over the next week or so they fell out but it wasn't as horrific as running my fingers through my hair and taking clumps of it out. Having no body hair at all was a weird sensation. Little things like having no eyebrows is quite hard to get used to.

People were very keen to tell me afterwards that being bald suited me, but in all honesty I think they were lying to make me feel better. They needn't have worried. I was aware I looked in pretty bad shape but was fine about it as I knew it was a short term thing. I sometimes wonder if people told me I looked good because they expected me to look worse so how I did look was comparatively good. I know I always imagine worst case scenarios when I visit people in hospital so can only imagine people were doing that with me too.