Learn to lose, it's easier that way

I've been really poor at keeping this up to date but it's been due to being so very, very tired. That's a positive though because it's been down to the number of visitors I've had in recently. It's the sort of hard work that I am always pleased to take part in. Having people round actually perks me up a massive amount but it lasts only up till the visitors go and then the effort of entertaining catches up rapidly.

So what's been going on then? Well everything is kind of on pause at the moment really and nothing much has changed in my condition. When I compare it with this time last year though it's amazing. Last Christmas I was a whole 12kg lighter than I am now so in many ways I am much stronger and am finding it much easier to cope with the odd chest infections I get which is a real positive. On the other side of things though I am actually physically weaker because the weight gain has all been fat based and with the loss of muscle all over I just don't have a great deal of strength. So I've restricted myself mostly to my own little room and just getting by with books and films and computer games.

I've also just had my 33rd birthday and I suppose I can admit now that there have been moments when I wasn't sure that would come around. My best friends have been joking incessantly about my making it to the same age as Jesus to which I responded that just like the man himself I moved about for a few years before ending up living at home with my mammy. Now for the miracles eh?

There's something happening here, what it is ain't exactly clear

In American politics they (rather harshly) use the term flyover states to describe that big bit in the middle that falls between the powerhouses of what they call the Eastern and Western seaboards.

I have come to regard ITV as my televisual flyover state. I skip past it on the way to something much more worthy of my attention. This is because it mostly produces the sort of drivel that I just can't bear to watch but I have to give credit where it is due.

Last night I watched a documentary by John Pilger called The War You Don't See on ITV1 and it was truly excellent. I first stumbled across one of Pilger's books in a bookshop in York a decade ago and I've read quite a few of his books and even been to the cinema to see a few of his documentaries with like minded folk. On those occasions I've felt that while I loved them they were always preaching to the choir so I'm very pleased that this show went out on terrestrial television. If it gets even a small audience above what it would usually have found then it's a real forward step.

If anyone is interested it can be found for the next 30 days on the ITV website (this link should last that long as well)

Pilger Documentary

Snow is falling, all around us

The last week or so has been mental weather wise and it's led to some real amusement for me. Loads of people are complaining loudly about having cabin fever after being stuck in the house for a measly few days. As someone who has been housebound for over 18 months now it's hard to find sympathy with that sort of ridiculous over-reaction but me being me I managed to do it anyway.

Of course they are being quite utterly ridiculous but the facts are that this is a real shock to their system whereas it's just the norm for me. They can afford to get all huffy and hysterical about things like this because, and deep down they all know this, it's only temporary. If I were to get upset about being stuck indoors I would have gone genuinely bonkers ages ago. I can't afford to let things like that bother me in the slightest because I know that, in the short term at least, they're not going to change. Getting annoyed at things you can't do anything about is a colossal waste of energy.

Having said all that I've never found it particularly difficult anyway as I've always been perfectly comfortable in my own company. At times in my life I've wondered if I am perhaps too much so but I think I've got the balance about right now.

Self explanatory, planetary information

Sometimes other people sum up certain things much better than I ever could (click on it to read it correctly)

Time to see what's become of me

In the last few weeks I've had a few very old friends get in touch through the medium of facebook. One I've not seen in the best part of a decade and the others I haven't seen since I was at school 16 years ago. The former of these three was a very close friend when we started at Glasgow Uni, and indeed introduced me to ex love of my life Sam, but when he left we kind of found ourselves moving in different circles and all my moving around the country didn't help. So now having found out that I'm at home he's going to come up and visit.

The other two are both even longer standing friends from back at school. The male one was my best friend from about Primary 5 through to his leaving secondary school at 16. I used to get updates about him from my dad as he is now a plumber and my dad used to help him out with stuff when he came into the shop but since my dad died he has gone abroad to work. Turns out he didn't even know my dad had died so was gutted to find out so long after it happened.

The third one is a girl who I was very fond of at school. She still lives nearby and is going to come up and visit me at some point too.

The reason I mention this is that I don't know how I feel about them coming. On one hand I really want to catch up with them and to tell them my story but I worry that they're going to see me in my current state of disrepair. This, after all, isn't the me that I like people to see. I'm not particularly keen on anyone knowing that I have weaknesses of any sort never mind the range of them that I currently exhibit.

The thing is that while I can handle sympathy for my situation, I worry that some people might pity me. There's a clear distinction in my mind between the two but in my addled state of mind I can't quite find the words to explain it adequately.

Of course rather than fretting about how other people are going to behave, which is quite obviously out of my control, I should concern myself only with how I am going to. These are all people that I was close to at some stage or another and I am genuinely excited to hear their stories, perhaps because when you look at people you went to school with there's a feeling that the path they took is one that was also available to you. They're living lives that could easily have been mine but for a few choices.

With birds I'll share this lonely view

Getting back, somewhat belatedly, to tales of my time immediately post transplant I think we had reached the point where I was recovering well from photopheresis treatments and concluding steroid treatment. I would remain on some form of immunosuppression for another few years yet but it seemed at that point that the aforementioned treatments had been successful in beating my chronic Graft vs Host Disease (GvHD) into submission.

That isn't to say that I emerged totally unscathed from the whole affair. The fact that my rejection problems manifested in my skin and in all the areas with mucous membranes has had long lasting effects that I've quite simply just had to come to terms with. During all the treatments my skin became very thin and porous and in some places it actually tightened. Now this didn't cause much of an issue except in one area where it really did cause a very surprising effect. I developed what they call mephosis. What it actually is is the contraction of the skin that makes up the foreskin which isn't really good for the penis.

So I had to go and see a urologist about what to do about it. As experiences go I can classify it only under the heading of surreal. As I took down my particulars for him to examine me he quite simply said 'Well that'll have to come off' to which I, somewhat shocked replied 'What, all of it?'. After he stopped laughing at my response he explained that all I needed was a circumcision to alleviate the problem. What's amazing about that to me was finding out just how many other people I know who had had the same procedure done. The other funny thing about the whole procedure was having to go through a barrage of tests to see if actually had any STD's before the surgery could take place. I had to go to the normal clinic where people have to queue up OUTSIDE on one of the busiest streets in Glasgow on what they laughingly call a first come, first served basis. There's a lot of people there with faces that just scream regret. That is the bits of their faces that you can see - there is an impressive amount of shoegazing that goes on in these places.

Now all the mucous membranes were affected so my digestive system no longer works as well as it used to, including my mouth flaring up in blood blisters when I eat some foods. Annoyingly this includes some of my favourite foods but I've got used to it now.

The other lasting effect that came about from this time is the one that people see most of because it involves my eyes. I no longer make tears in my left eye because the glands that produce tears have been damaged. This means that I will always have to use artificial tear drops in my left eye to lubricate them. It's not that much of a problem for me but lots of people do seem quite freaked out when I casually put drops in my eyes.

What we didn't know then that we can see retrospectively is that the GvHD in my lungs hadn't completely gone away and was, in actual fact slowly damaging my lungs over the best part of the next decade. It was such a gradual process that it was barely noticeable between each visit to the respiratory docs but it's plain to see looking back the way.

At the end of the photopheresis I had my second Hickman line removed. Sadly this didn't go as easily as the first because this little piece of rubber had decided to graft on to the blood vessels it was attached to. I couldn't get my own internal (or external) organs to recognise that they were part of my own body yet here was a little piece of rubber that my immune system happily accepted as its own. The doc removing it had to do so very slowly making circular cuts around the tube to get it out and this meant that the scar left behind is quite an ugly one right above my left nipple. It essentially looks like I've been stabbed on that side and have a bullet wound in the other where the first one was. Still chicks dig scars so it's all good really.

How 'bout that ever elusive kudos?

So this came to my attention

Link

It's really set my mind going. I have to admit that it's something that has passed through my mind on occasion what I would say to the family of the person whose lungs I receive. I have a little more experience in this than most people would have as I already had one transplant and gone through all the emotions of how to thank the person responsible for saving your life. Of course in that instance I could actually say thank you to my sister whose bone marrow I received. With the next transplant it will of course be the family of the donor I thank and it just seems to me that it will be much more important how I express my thanks in that situation.

Clare knows how much her bone marrow donation means to me and I can express that any time I choose to. As it happens I choose not to actually do so because it kind of passes between us unsaid but I know that I can choose to put it into words whenever I feel like it.

Where I have to thank a grieving family there is significantly more pressure, even more so now I can now see all the beautiful ways in which people have expressed their gratitude before me, but mostly because it's something that is cast in stone and will be cherished. I need to get it absolutely spot on.

We're just a million little Gods causing rainstorms

In the wee small hours of last night's attempt at sleep I had the latest in an occasional series of mishaps. Just after 5 I woke with the crippling sensation that accompanying me in my bed was a pool of liquid. After an exasperated 'oh for fuck's sake' was uttered I took to mopping up the mess. Now this is no teen wet dream scenario for you grubby minded types amusing yourself with such ideas - what had happened was that one of the external plumbing connections that pump liquid food into my stomach overnight through my PEG tube had disconnected (probably caused by my rolling over and twisting it) and was continuing to pump the feed onto my bed.

I did the best I could be bothered to at such an unearthly hour and went back to sleep trying to avoid the wet patch, a manoeuvre I've almost perfected over the years. It is a whole lot easier when you've got the bed to yourself admittedly. I sorted out the plumbing issue but couldn't bring myself to put the feed back on just in case it happened again.

This all happens because I'm actually meant to sleep almost upright when I'm in bed but that only really happens till I doze off and then I slide down and the tossing and turning that accompanies that is what causes the twisting of the tubes, which in turn leads to the, thankfully rare, detachments. It's only happened four times in the year I've had the PEG tube in which is just about the regularity that I can deal with.

Let the heathens spill theirs on the dusty ground

carrying on with the theme of the last post today it's exactly ten years since I put my best swimmers under storage. This has actually been on my mind for a bit now as at the time they told me that they recommend using sperm within ten years of the deposit. Now since that has happened I have been told that it's not really a concern as there have now been plenty of occasions where sperm older than that have been used successfully but it's just a funny feeling knowing that your sperm has a best before date and that it has now passed.

Of course for it to be any use I'll have to find someone not only willing to use it but to go through the process of creating a child through the use of a turkey baster. It's not a great thing to have to bring up at the start of any relationship. Having said that any time I have done so the person involved has been nothing but supportive and there's been plenty of laughs about the plain absurdity of the whole idea. Still, as I say it's an issue for some time in the future and even then it might come to pass that it never becomes an issue. I have to admit I've wondered about whether I actually want to pass on my rather dubious genetic material onto another generation but the wealth of children my family and friends have been producing over the past few years has left me monumentally jealous. I'm definitely missing out on something and when I'm fit enough to cope with it I can't wait to get in on the act.

I wish I was a fisherman, tumbling on the seas

The observant among you may well have noticed that today is the 10th anniversary of my diagnosis day. Woo and indeed hoo.

The fact that I am still around ten years later is nothing short of incredible and is testament to just how lucky a person I am. To be born in a time when (and where) such medical miracles are possible leaves me feeling incredibly blessed. Of course I wish I hadn't had to endure all that has gone on in the last decade but the fact that I am still around to muse on those events is something to be celebrated without thinking too much about the bad things.

Cancer patients are often told to look to the 5 year point of their Cancer being undetectable as being the point where they are cured. When I got to that point I was living in Aberdeen and getting on brilliantly both in terms of the research I was doing and in my personal life. It was, by some distance, the happiest I had been since my diagnosis. When the 5th anniversary of my bone marrow transplant came around I sent an email round all my friends to thank them for every bit of help they had given me (and that I hoped I would never get to return the privilege). I also said that I hoped from that point onwards I could start putting the Cancer years behind me and start looking forward to a life without that shadow being cast over it.

Another 5 years later and I can look back on that time very fondly but also knowing that I was deluding myself. I was finding that hills around town were becoming more difficult as time went on and looking back now I can see a regular, steady decline in my lung function. I suppose I didn't want to acknowledge that it would come to a point where something needed to be done about it. I was already annoyed about the limits my scarred and battered lungs had placed on my life and didn't want to think about more limits arising so I just ignored it.

Even though there was this fairly steady decline in my lungs it was something I could still cope with. That was until fungal pneumonia came along and triggered my immune system into damaging them beyond repair.

I don't know what else to say but I think you get it

I've been terribly remiss at keeping this going. I've had a chest infection over the last few weeks and it and the antibiotics I was taking for it have left me feeling totally drained so I've not really felt like talking about it.

As well as physically not feeling great, it does terrible things to my mind as well. I can't concentrate on even the simplest of things and it becomes hugely frustrating for me because I can actually feel that I'm struggling. I can't concentrate on books at all and even watching films I'm finding that my mind wanders.

I was at the hospital yesterday for my monthly dose of immunoglobulins and the docs gave me a different type of antibiotic to ensure that my chest clears completely because even by my own low standards it was particularly wheezy. That said I still forced myself to walk into the clinic and walk all the way back out to the car afterwards. It was very tough going if I'm honest but I really feel that I should push myself like that occasionally.

I need to organise myself and get a flu jag but I'll need to be absolutely clear in the chest before getting that.

I wanna live, breathe, I wanna be part of the human race

I have news of a sort. The transplant secretary phoned me to tell me their plans for seeing me. They will see me at one of their satellite clinics at Gartnavel Hospital in Glasgow which is great news as I wasn't keen on the prospect of having to go down to Newcastle for their assessments. The problem is that their next one in November is already completely full so I won't see them until February.

There's no getting away from the fact that this is a bit of a downer for me as that seems very, very far in the future. By the time it comes round in fact it will be a year after I had hoped to see them. The incessant weight issue is what has been responsible for such a long period of waiting so I understand why it has taken so long but it is incredibly frustrating now that issue has been resolved that there is another such gaping hole in my life before any progress can be made.

One of my main concerns is that the winter is such a traumatic time for me as I struggle fighting off persistent infections through those months so I worry that I might actually not be well enough to even see them. Of course worrying about things that are so far ahead and ultimately outwith my control is idiotic but I'm allowed to be idiotic once in a while.

So by the time I actually get to meet the transplant team for the first time almost two years of my life have lapsed without doing anything I'd wanted to be getting on with and it's beginning to wear me down because I know that it will probably be years before I can even get a transplant as well so I'll be well into my mid thirties by the time I get ot kick start my life again.

I think about my twenties in a bit of a schizophrenic way because while I feel that I missed out on large swathes of the sort of things that most people do in their twenties, I am also very aware of the incredible number of things that I have done that are quite remarkable for someone in my position. I can only hope that by the time I'm forty I can have the same sort of feeling about my thirties.

Drying up in conversation, you'll be the one who cannot talk

I've been reading a few other blogs recently that are written by other people who have already had their lung transplant to see what I can expect and I have to say that even though I can find lots of material out there from people in that situation they all have one thing in common, the cause.

They all suffer from Cystic Fibrosis and there seems to be a bit of a mutual help structure for those in a similar position to them. Now I know that all my symptoms are fairly similar to theirs and there's a lot more that we have in common than separates us but I feel strangely excluded from that particular group.

I've never really sought the company of strangers who have the same conditions as me before so it's a strange feeling for me to be thinking about it. I suppose I had enough of my family that were au fait with the subject that I could turn to if I ever wanted a chat about the Leukaemia so I never really had to look outside. In this chapter of events though there's no familial point of reference.

Being honest I haven't even managed to formulate what I would even want to ask someone who has either gone through the lung transplant process or is in the same position as I am in waiting for one so it's not really a pressing concern but it would be useful to know that when such things enter my head I have an option.

The medical things I can find out from doctors or from doing a bit of research - it's the everyday, almost trivial stuff I'm meaning. I'm sure all the CF folk would be happy to answer anything I ever have to ask - I don't know why I feel so weird about it.

Ready or not, here comes a thought

Broadband is still playing up but I have remembered that I actually have a internet dongle for such times so I'm now using it.

So where were we?

That's right it is early 2002 and I've really just started the photopheresis treatment to treat the GvHD which is attacking my organs, especially the skin. Like all apheresis procedures, where they take some of your blood out and spin it till they get the layer they want, it is a time consuming affair. Generally from start to finish it takes about four hours. It's also a very tiring affair. I always left the sessions exhausted, but I suppose that's only natural when for sections of the day a decent amount of your blood is actually outwith your body.

While there were lots of films and things in the apheresis unit to keep you occupied for the time you're hooked up to the machines, that's only really helpful if you can stay upright to watch them. Because I'm a slight wee thing having some of my blood out of my body sometimes led to me feeling a bit flakey so the only thing I got to see was the polystyrene tiles of the ceiling. The other thing that was almost always true of these sessions were that I would feel pretty cold. Most of the time I just slept through the whole affair though. On a few days where I was wide awake for it I took my laptop with me so I could try and write about the whole bone marrow transplant experience. It was much easier having access to my medical notes to see if my memory was in any way related to what the doctors had noted about the treatment. I got a fair bit of enjoyment out of doing that and those who have read it have told me they enjoyed it greatly. Having written about it at the time has made writing this blog a lot easier as well as I have lots to refer back to. It was never organised enough to put it into any sort of book but I still read bits of it as a reminder to myself of how harsh things were and how lucky I was to still be around to write it.

Just when I was coming to the end of the course of photopheresis treatments I was asked by the staff at the apheresis unit if I could come to one of their education days and speak to the assorted medics about what it is like to be on the receiving end of one of their treatments. I was thrilled to have the chance to do that and it was just the sort of thing I needed at that time to keep me busy.

I was well enough that I could actually feel bored but not well enough to get my 'normal' life kickstarted again so a little project like that suited me perfectly. I also just like doing presentations and what better a subject to talk about than yourself. So I prepared a slideshow and gave a talk about how those treatments make you feel and that sparked a discussion about how the whole process can be made more comfortable for the patient. The whole thing was a great success and the next time I went in for my own treatment one of the nurses who run and monitor everything told me one of the delegates was quite taken with me and was thinking of asking me out. I asked what her name was and Diane replied 'Stephen'.

So, not exactly my type then.

Back then it was usually my sister Clare who took me to most of my appointments, although as I was getting better I would sometimes go in to Glasgow on the bus. The word enjoyed isn't right when talking about any of this but I get the feeling that she appreciated being there with me at most of the appointments. I have never taken a relative in to the consultations with me even though all the books tell you it's a good thing to do. I'm happy having someone come with me but they don't need to hear all the stuff that goes with all of this. I've always just felt happier at being able to pass only what information I want out to everyone. I think when so little of my life was under my own direct control this was my way of at least being able to keep one aspect of it just mine.

Appypollyloggies

For those worried about the lack of output it's simply down to a dodgy wireless router and not related to my health. Typing things out on the phone is a bit much so I'll get back to this when I have a connection I can use from the comfort of my scratcher again.

Out of the mouths of babes

The other night my nephew Daniel was staying due to his mum and dad's shifts and he gave me a tremendous laugh when he asked his mum why there was a diving board in our bath. He was referring to the board that I use across the bath so that I can sit while I have the shower running. I love the way the eldest niece and nephews look at the world with such wide eyed innocence. They amuse me greatly and the difference they make to my life is massive.

I love it when they come and visit and play games with me because they genuinely are the people who treat me the most like it's a perfectly normal state of affairs to have tubes sticking out of you.

The kids have always been great fun for me to have around when I've been unwell but especially Maria because she was just a wee thing when I was first recovering from my bone marrow transplant and kept me company on a great number of days whether it be messing around the house or going on incredibly long walks around the town. She even used to amuse herself by helping me count out all my tablets. A special amusement was reserved for the effervescent painkillers I took which she referred to as plunk fizzes. Nowadays the boys always like to help me by putting them in water and watch them foaming up and hissing at them.

I can sense it, something important is about to happen

I know that I've said a few times about how difficult I found it looking at someone else's face in the mirror during my treatments and I thought it prudent to actually give those people who didn't experience it a taste of how big a difference there was.

For background here's a photo of me just after day 100 post transplant with my niece Maria.

I'm still quite thin but it essentially looks like me.

Now after being on steroids for a month or so I looked like this

I think you can probably agree that it's a bit of a difference. One of the weirdest aspects of it was that people didn't recognise me so people I had known from my schooldays would walk past me in the street. I went up to Aberdeen to meet my old mate Rich Wells from my time in Cardiff about restarting my studies up there with him and he didn't know it was me that walked into his office until I started to talk.

In those times I was so sure that my life was ready to get back on track but I hadn't accounted for all the side effects from the steroid treatment. Just after I started the photopheresis treatment in the December of that year I was unfortunate enough to catch a respiratory virus. I managed to spend Christmas day at home but as this photo shows I wasn't in the best of form.

The very next day I went in to the hospital and they took one look at me and said I'd be staying for a bit. I had to get arterial bloods taken which was unbelievably painful and when they took my oxygen saturation levels it was at 75%. I was in a very bad way indeed. I was in there for a fortnight and it was one of the most harrowing times that I've ever had. It was the reminder that I obviously needed that I was a very long way short of being able to move away again to restart my studies.

It's bleak enough being in hospital but at New Year it was particularly galling for me because my room faced directly down towards the city centre of Glasgow so I could watch the fireworks and lie there thinking about the fun everyone else was having that I was missing.

When I got home again I had to rethink how I was behaving. I had been going out regularly in town with my friends to maintain some sort of normality in my life but it was doing this that was giving me the infections that were flooring me so I decided that just being at home for a while was the best plan. In retrospect I can also see that my confidence had been absolutely shattered because of the steroid face and the constant shaking from the medication. I've never been short of confidence so this was a very strange sensation for me.

So friday nights were spent at home but I almost always had friends round to keep me company. It was almost always Dave and Owen but a few of the other guys came along regularly too. I would sit and munch my way through masses of food while those two drank (and Dave ate all my Haribo sweets) until they fell asleep. I can't begin to explain how much it meant that those two decided to spend their time with me rather than going out for all those nights. Don't get me wrong their patter was shite but it was still nice to have it.

And dreaming; this is not dreaming

The months immediately following my bone marrow transplant were filled with twice weekly trips to the clinic at the hospital to be assessed and to have bloods taken. As a result of those I spent a large amount of my time utterly preoccupied with the numbers reported back from my blood tests, desperate to see if I was making the correct sort of progress or looking for the tell tale signs of rejection.

It's a confusing time as having gone from being completely bald, taking the immunosuppressant cyclosporin to avoid rejection means that you become quite hairy. By which I mean that your eyebrows actually start to extend towards your sideburns and your beard takes up a lot more of your face than you ever remember having to shave before. It's all a bit teenwolf really and not a particularly good look. I felt a bit down about having to look at another different person's face in the mirror until one day at the clinic I met a teenage girl who was going through the same treatments as me. It must have been so much worse for her.

So I was constantly on edge about what my condition was and it wasn't until day 100 post transplant that I began to relax a little. Up to that point they rely on various markers from blood tests to ascertain whether you're rejecting the new bone marrow, but after day 100 they do another bone marrow aspirate and see for themselves whether it is the old bone marrow (with the Philadelphia chromosome) or the new stuff. For this one I was thankfully well sedated and within a day or so they had told me that the old bone marrow was undetectable which was a massive relief.

Then all I had to worry about was the fact that my brother was getting married a month later and I just had to avoid infections so I could make sure I go to the wedding. I did better than that in fact and even went out on the stag do with him and his mates. The wedding itself was great although I have to admit having a wee greet to myself at one point because I was just so glad I was there. I had the obligatory dance with my wee granny as well which just made it perfect.

In the months following I felt almost back to my normal self so I went down to Cardiff for a long weekend to visit my friends and to show them that I was doing ok. I had such a good time and it was amazing getting away for a bit - I even got involved in a game of football with the guys down there which amazed everyone, including me.

It was on the train on the way back up from Cardiff though that I noticed that my skin was reddening. At first I thought it was just a little sunburn but it stayed that way for over a week so I mentioned it to the docs. They saw it instantly for what it was, the first sign of a completely different sort of rejection.

No longer worried that I was going to reject the bone marrow focus now shifted to the reality that the bone marrow (being the basis for your immune system) was starting to reject me. It's a condition known as graft versus host disease (GvHD) and is what is responsible for my current plight. Now a little GvHD is actually seen as a good thing as it means that the bone marrow graft has definitively taken hold as your own but in extreme cases it can kill you. We had to ascertain which of these it was and how to treat it so a barrage of tests was conducted, including skin biopsies.

It turned out that not only was my skin under attack from my new immune system but my liver, kidneys and lungs were getting it too. The fact that even my own body was attacking me wasn't lost on my friends who, despite the seriousness of it, took great delight in knowing that even my own organs can't bear my company.

The treatment started with a random choice for a variety of treatments on offer. As it happened though I took a bad reaction to the drug tacrolimus so I was put on to a different protocol almost immediately. This involved steroids along with another immunsuppressant called mycophenolate mofetil. The varying doses of these drugs meant that I was always given them in small capsules and at one point I had to take a grand total of 63 tablets per day.

The problem with steroids is that although they do calm the immune system down, they also have awful side effects and it wasn't long before diabetes kicked in for me, which led to more medication, a side effect of which was to give me uncontrollable tremors in my hands. I was exhausted and started to put on weight at an alarming rate. I put on two stone in about 6 weeks so again I was looking at some other person's face in the mirror, and this time he wasn't particularly good to look at. It was a horribly distressing time and I ached for some respite, which came from a source in the hospital.

I was given the chance to take part in a study into a new therapy called photopheresis which could help the effects of my particular autoimmune condition. The theory is that they take a type of cell called the T-cells out of your blood and damage them with UV light and a UV sensitive drug that binds to the T-cells. These cells are responsible for immune response so if they were to be damaged in this way and then given back to you then it would 'teach' the immune system not to attack the organs it has been attacking.

It involved long sessions hooked up to the machines which separated the cells but I didn't mind that at all. I had my Hickman line removed after an infection previously so I had to have another one implanted but that was fine - it wasn't so much of an inconvenience anyway.

People say I'm the life of the party

So I went out on saturday. My friend Stephen was having a barbecue so I took the opportunity to go up and see loads of my friends, and their families, in one go. I had an absolutely fantastic time and the only pity was that my oxygen supply doesn't last as long as I'd like. Having said that though when I got home I was actually a lot more tired than I had expected to be so it was probably just long enough to be out. I know in myself that I am more subdued these days than I used to be in these sort of situations but I still enjoy myself greatly in the company of people I've known for what seems like forever.

It actually leaves me still tired the next day after I go out too but it's so very worth it. It's amazing to do something that is just a little bit normal again.

My monthly trip to the hospital was this morning and I got my infusion of immunoglobulins to bump up my immune system which went perfectly well. The consultants are all perfectly happy with everything now and seem just as keen as I am for progress on the transplant front. They've all been so visibly annoyed that this has happened to a patient that did everything according to their protocols. It just goes to show how little they can predict about any patients long term prognosis.

Slight addendum to this is that my docs called me when my blood results came in and it seems long term use of toxic drugs has had an effect on my kidneys so I have to miss a few days worth of the immunosuppressant I take and then reduce the normal dose thereafter. It only surprises me that it's taken ten years for that to happen as my body has had a lot thrown at it medicine wise over that period. As soon as the doctor told me it made sense as I've been peeing much more regularly than normal over the last week and thought it was a bit weird.

The other thing that came to light today is that the nurses at the day unit gauge my health superficially by how often and how loudly I sing when I'm there. When I'm feeling good I apparently chant away to my hearts content. I've noticed this myself actually but the issue with it just now is that while I may well be singing it's not my normal singing voice. I don't have the breath to go for it the way I normally would so it's a much more reserved performance. One of the first things I'll do with a new set of breathing gear is to really let go with a song.

So does it matter if I give in easy?

When I had to go back in to hospital with the infection that led to the removal of my Hickman line I got a new insight into exactly what my situation was. In the solitude of the rooms of the transplant ward you don't really pay much heed to the fact there's other patients there because you don't have any contact with them. When I ended up back in there I was in a room for four so there were three other men all suffering from Cancer in one form or another. As it happened one of those chaps was an elderly man who had just been given the news that his treatments had failed and all they could do for him now was to make him comfortable. He took the news in the most relaxed manner and when I spoke to him just afterwards he said he knew it was coming so it wasn't worth getting in a flap about.

Hospitals aren't great places for retaining any sort of privacy and because he was completely bed ridden and couldn't get out to the relatives room it meant he had to explain to his family that nothing more could be done from his bed in a shared room. They were understandably distraught and the vision of a dying man consoling those he loved will stick with me for a long time. Try as I might I couldn't ignore what was going on in there even knowing how intrusive it was.

It's the very nature of Cancer wards that some patients won't make it and I've shared rooms with quite a few patients who haven't been as lucky as I've been and it always brings my own plight into sharp focus. I sometimes forget just how close to the edge I've been, although I suppose that might be a coping mechanism as you can't get on with your life if you're busy worrying about how close you were to losing it.

I know a place where I can go when I'm low

There aren't any photographs that I know of that have captured me in my bald phase but that wasn't because I didn't want anyone taking pictures of me in that state. It just so happened that nobody brought a camera in with them when they were visiting me (well why would they?) and it never occurred to me that I might want a picture of me like that. I kind of wish I had got someone to take a photo of me back then so I could see for myself whether I did indeed suit being bald or whether that was just a kindness on the part of my friends.

I only had access to one mirror in the en-suite bathroom and I had very little use for it as I had no hair to brush and no need to shave. I even tended to brush my teeth at the sink in my room because I did it so often it was just easier to do it there. So I never really looked at myself all that often, although I do remember thinking, through the opiate induced fog, that I was looking at someone else's face in the mirror.

The weird part really was losing all my body hair. Now I'm not the hairiest of chaps anyway but there's something very peculiar about feeling completely smooth from top to toe. My skin also felt paper thin and I needed to use moisturiser for ages because it was so affected by radiation treatment. I just felt so fragile.

So while I was still in there feeling altogether like someone else my friend Lynn came by with a wee photo album full of photo's of all the things we had done together since we were at school and all through uni. It was the loveliest gift and we sat going through them all trying to piece together what all the events were and when they had happened and, perhaps more importantly, which of us had done something stupid that particular time. The album was only a third full and it was Lynn's instructions to me to fill up the rest of it with the stuff we'll do after I get better that tugged at the heart strings. I had a good wee greet at the thoughtfulness of it all when I was on my own later that night.

I've allowed my fears to get larger than life

In the immediate aftermath of the bone marrow transplant I was what they term neutropenic, which meant that my white blood cell counts were very low and was therefore wide open to infection. Now during that time extra measures are put in place to further minimise the chance of infection. It's a million miles away from the bubble that used to be commonplace but it can still be quite a lonely time. One of the weirdest things they do when you're neutropenic is to treat any material coming into the room as a potential risk, which includes things like newspapers, so I was always a day behind in the news as my papers had to go and get microwaved before I was allowed them.

It makes perfect sense when you stop and think about it but it amused me greatly that my news had to go through such a process to reach me.

Being neutropenic was what was keeping me in hospital post transplant as my immune system wouldn't be strong enough to be out yet, which was a little frustrating even if I understood the logic.

I still couldn't eat at this time though due to the terrible ulceration of my mouth so I had a Nasogastric (NG) tube put in to feed me directly to ensure I didn't lose any more weight. When getting that put in I had to get an X-Ray done to make sure it was in the right place and it was an old friend from school that came with the portable X-Ray to do it, which was lovely if a little weird.

About this time I got quite obsessed about knowing what my blood counts were as they were what was keeping me in so I was always looking for updates that might be a hint that I could get home. After 5 weeks or so my counts were high enough that it was safe for me to go home. I was still going to the bone marrow clinic twice a week so I was being very well looked after, but the difference in getting to go home to your own bed to sleep is incredible. As much as anything else it's just nice to get through a whole night without a nurse coming in to check your obs or getting rudely awoken at just after 6 to get bloods taken.

I still had the NG tube in for that first week or so at home as I was still not eating sufficiently and what with still being bald I didn't look very good. I went to mass with my dad and got stared at pretty incessantly by a young boy who was fascinated by it all. It was a worthwhile venture out the house though as I met another old friend from schools mum and dad who told me just how upset their daughter had been to hear about my diagnosis. She was living in America so I told them I'd get in touch with her to let her know that I was doing ok.

I only managed a month before I ended up back in hospital again due to an infection I picked up. Unfortunately it probably was caused by the hole in my chest so we had to take the Hickman line out at that time. I say unfortunately because that meant going back to taking blood the conventional way. I had also grown rather attached to this odd little bit of plumbing, except on the occasions when I accidentally tugged on it admittedly, so it was weird to have it taken out.

So that was another ten days in the hospital getting antibiotics and having the joy of fairly regular Naso-pharyngeal aspirates, which basically involve shoving a tube into your nose and what feels like forcing it into your brain, and sucking whatever is up there out. It fair brings a tear to the eye and nothing will ever get you used to it.

The odd infection notwithstanding, the docs were extremely pleased with my progress and I have to say I felt pretty pleased about it all myself. I even thought to myself that it had all gone rather better than I could have hoped for and wondered whether it was going to be just that straightforward.

Post transplant there is a 'battle' for prevalence between blood cells made by the old bone marrow and the new stuff which is assessed by the doctors in what they call chimerism (from the Greek mythological creature the Chimera). On that front I was making excellent progress, which was testament to the fact that the chemo and radiotherapy regimes they had made for me had worked well in destroying my own bone marrow so it wasn't putting up any fight at all.

Oh, for the sake of momentum

Well I'm feeling a bit better now. I've even managed to eat a couple of light things and kept them down too. I even feel a little more alive as a result.

The result is that I'm up and about and was the beneficiary of a visit from my two nephews an hour ago after their first day at school. They looked so very sweet in their uniforms and they were amazingly excitable. It was great to see them both and I'm really glad they both enjoyed it.

Now I think I deserve an hour of lying in the bath and just soaking away the aches and pains of the last few days.

People move on, move along

I'm absolutely furious just now. I'm meant to be at my oldest friends wedding and I'm simply not well enough to be there. I've been sick all week and just can't stop vomiting. The problem, as usual, is that I simply can't get enough of a breath and that's meaning that my body can't digest any food and so is just getting rid of it. It's incredibly infuriating especially because it's causing me to lose weight again and as a result I'm feeling terribly sorry for myself.

It is a bit of a cliché but I'm sick and tired of feeling sick and tired. I'm incredibly bored of it all.

The happy couple are coming up to see me tomorrow which will make up for it in some way but it's just not the same as seeing all the guys I went to school with and very rarely see any more.

I never thought you'd be a junkie because Heroin is so passé

In the midst of the morphine fog I got a visit from Laurie. Even though we had split up she had promised that she would come and visit albeit with the proviso that she couldn't cope with me getting injections. I reassured her that because I had the Hickman line in I wouldn't need any injections as everything intravenous was going through the spaghetti junction on my chest so she came up and sat with me for hours. As fate would have it though I did need an intramuscular injection and it was needed in the exact time when she was there so she had to leave. I'd never seen anyone so very averse to needles before; not even my brother is that bad.

By this point I was glad we had broken up because I now understood the full ramifications of my condition and I'd have felt bad for anyone having to deal with it. The paranoia that the drugs induced would almost certainly have led me to thinking that she was only staying with me because it was too cruel to split up, which would have compounded my misery.

The misery of morphine continued well after I came off it. The withdrawal was just as horrific an experience as being on it but in a very different way. It wasn't without pain but more than anything it was the anxiety that sticks in my mind. I don't know what I was so fraught about as I had the best medical staff around dealing with the worst aspects of opiate withdrawal but I was still very tightly wound and couldn't relax at all. It did give me a completely different attitude towards those dealing with addiction though.

When undergoing withdrawal I had ridiculous tremors in my hands so the guitar that was meant to keep me occupied sat in the corner of the room untouched. When I picked it up after my recovery I realised that it wasn't the best of ideas. My skin was paper thin and even basic guitar playing was cutting my fingers to ribbons, which when you can't stop bleeding easily pretty much counts as self abuse.

It didn't go unplayed though as one of the nurses used to come in on her break and play it for me while I sang along every now and then which was a quite lovely way to pass the time.

Dreams and songs to sing

Today my 11 year old niece has gone to her first ever Celtic game. I am so very jealous. I've realised that last season was the first since I was her age that I didn't get to a single game. Now I do have a pretty decent excuse but it's quite sad and I now feel a little bit detached from the club as a result. It's just not the same watching on telly.

That said there was the time after the bone marrow transplant when I wasn't allowed to go to games too and I coped with that much better. Having said that those were rather more successful times so it was a bit easier. I did of course miss some of the most incredible games of my generation but it didn't matter so much somehow. In fact the fact that we were a good side back then actually gave me quite a few moments of absolute joy in the middle of some pretty horrible times. When seriously ill you do realise that things like sports are pretty inconsequential yet these trivialities can have a massive effect on your well being. Celtic had an actual placebo effect on me.

There's something weird going on though when I miss it more when we're rubbish compared to when we were actually a very good side.

As much as the football itself is something I miss, I probably miss going to the pub pre and post game more. I really miss catching up with the guys and sitting talking utter pish with them.

I heard you say the past was much more fun

If pain reminds you that you're alive then the aforementioned episode with the stomach acid is the most alive I've ever felt. If that's true though then is the converse true as well? Is the inability to feel when we're at our least alive?

After the initial high of receiving Diamorphine it rapidly became a terrible burden. I couldn't cope without it but being on it was a horrendous experience. I've mentioned the dreams before but that isn't even the half of it. My waking hours were spent with a mind gone wandering. I couldn't trust my own thoughts and often made little sense to whoever was with me. Normally that would frustrate me as I always like to be understood, even if someone disagrees with me, but I felt nothing. I was as they say 'oot the game'.

So I couldn't interact with the world in the way I would normally like to and I vividly remember feeling completely detached from it. Allied to the sleep deprivation I was suffering from I just didn't feel like I was operating on the same level as all these people around me. Feeling so detached from everything around me, I felt like I wasn't making a mark on the world, that my life wasn't of note, that death might not actually be either too far away or even unwelcome. The numbness felt like preparation for the end in my mind; a fog that hides everything yet gives the sense of impending danger.

All these thoughts are, with the benefit of the retrospectoscope, side effects of the chemicals sloshing around in my bloodstream but they felt so very real at the time. I've never really spoken about it to anyone because there's very few ways to crowbar that there were times that you wanted to just close your eyes and slip away into the conversation.

I know that when I get my chance at a lung transplant that pain medication will be necessary at certain points but I'll be doing my best to minimise how much of it I get. I'd rather feel a little pain than have to endure that fog again.

Just have a little patience

Today's wee trip out to the leafy west end of Glasgow to the Beatson Oncology Centre reminded me of a few things about Cancer patients. Everyone is familiar with the inspirational stories of Cancer patients in their daily battles to survive but very few people seem to mention those patients who don't take their treatments seriously.

It's a minority clearly but some of the things you see in the day units is hard to stomach. I've seen people walk out of the day unit in between sessions to go to the pub for a few pints and a smoke. It's not even so much things like that which gall me the most, it's the ones who seem unable to show even the littlest gratitude towards the medics that are not only keeping them alive but treating them very well in the process. They are never done complaining about how long each step takes and seem oblivious to the fact that things sometimes take a while because great care needs to be taken with the treatment they are receiving as well as the fact that they're not the only patients there. That seems to be the hardest thing for them to understand and while I can understand frustration at times it's always the same ones who snarl at the staff and almost always over really trivial things.

Today there was justified frustration for one woman for whom the pharmacy had messed up and was left waiting for hours till it got sorted but all she did was get herself a wee cup of coffee and a blanket to keep her warm and sat and had a wee snooze till the time passed. I've been in similar positions myself and done the same thing - there is just nothing to earn from getting your arse hairs in a knot about something that can't even be altered by shouting anyway. I always found that I didn't really have the energy to get all worked up about things so maybe it's a testament to these belligerent nutjobs that they can still muster up the energy to act like a spoiled wean even during chemotherapy.

I wish they didn't have to do it in shared areas though, and I especially prefer it when they don't ask me what I think. They never seem to like my responses.

Oh and yes it is a Take That lyric. What of it? Eh?

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.

I believe them bones are me

Back in the present I've started taking calcium supplements to improve my bone density. Previous periods where I had to take large doses of steroids has left me with mild osteoporosis and the docs want to try and improve it as much as possible. The measurements show bone density of around 80% of the normal level in both my spine and my hips. It's only a mild case so it's not really that big a worry but it does make me think about some of the ways in which I have been lucky.

You see my cousin Stephen had Leukaemia when we were at school and he wasn't lucky enough to have someone that could be a donor and so instead had to have some very aggressive (even for cancer) treatments. Part of this included large doses of steroids over a prolonged period and the long term effects of this have meant that he now has had both of his hips replaced. Mind you he's still got functioning lungs so it's all swings and roundabouts.

Seriously though, having such a close family member going through such a similar process but diverging on critical points has been interesting for both Stef and I. We're not a pair of cousins that live in each other's pockets but on the times when I've needed someone to talk to about things that really only make sense to someone who's been through it all he is an invaluable person to have around. We each get to joke about aspects of it that those normal folks around us would maybe flinch about making which can be a blessed relief. He takes great joy in mocking me for copying him and stealing his thunder in contracting leukaemia in the first place. Apparently I've never done anything original in my life.

Of course he was much more useful to me than I ever was to him as he was the first of us to walk this particular path but I do think he got a curious satisfaction from knowing that the things he went through did turn out to be the norm for this sort of thing. When we do get together we compare notes about the things we've had in common and all the things that differed.

It is still hard for our old friends from school to understand that the two diseases are completely separate and it really is just a matter of chance that two cousins in the same year at the same school both ended up with Leukaemia but that's the plain facts of it. The two types have their own specific pathology although both are caused by mutations to DNA. Yes, we are both mutants.

For a pair of comic book nerds this is most amusing although I have to say we were both pissed off that our special X-Man type powers was the ability to make so many white blood cells that you die. As powers go that's quite frankly piss poor. Even the radiotherapy we had didn't turn either of us into the Hulk.

Radio, someone still loves you

The seven days before the actual transplant are what they term the conditioning phase, where they are preparing my body to receive the new bone marrow. This they do by killing the existing stuff.

Two methods are deployed to this end. On days -6 and -5 I am to be given chemotherapy. Day -4 is a rest day and from Day -3 I am to receive twice daily sessions of radiotherapy. One final session on the morning of day zero and then I receive the new marrow later that day.

That's the overall picture. Here's the details that I can recall. It being 9 years ago I'll have surely forgotten some of them but I think I remember most of it.

Before any of the seriously nasty treatments begin I have my pulmonary output measured. I measure 550 on the peak flow meter. It's at this point that I get my first treatment to prevent me from getting the more dangerous types of pneumonia when my immune system will be suppressed.

Just before I get my first dose of chemotherapy, the nurses check my blood pressure and all the normal things they check and it amuses me that I measure an absolutely perfect 120/80. It makes me wonder instantly about how different a ward this one is. They take in patients that in many cases don't look all that sick (they obviously are but just don't look it yet) and then they systematically make them sick as a prelude to making them better. It takes a very specific sort of doctors and nurses to have a specialty like that.

Within a few minutes of starting the chemotherapy I was massively sick. I had been given anti-emetics (in fact I had been given the newest, and generally most effective type) prior to starting the chemo to stop me from being sick but for some reason they weren't working on me so they rather rapidly had to get a doctor to prescribe me a different type so I could get some respite. This all happened in the exact hour my mum had came to see me in there for the first time and I spent nearly all of it in the bathroom throwing up with more force than I had ever done before.

It wasn't exactly how I wanted it to go. Normally when I know people are coming to see me I organise things around their visit so they get to see me at the best I'm likely to be which often involves quite a lot of strategic drug taking. Where chemo regimes are concerned though you need to take them at specific times and it doesn't matter if you've got the Pope visiting, you're getting your treatment there and then.

Luckily the new anti-emetic managed to calm things down and being honest I had very few problems with the short regime of chemo I had. The radiotherapy is really something else altogether though. I recently (and I have to say stupidly) calculated that over the seven sessions of radiotherapy I had I received a dose of radiation that is equivalent to 105,000 chest X-Rays.

That first morning when I had to go across town from the Royal Infirmary to the Beatson I felt pretty fine, if a little tired. The nurse that was going across town with me was most amused that we were born on the exact same day but totally freaked out when the nurse on the other end at the Beatson also had the same birthday. I was thinking about other things, like the fact that the kids going in for radiotherapy never look scared but all the adults look terrified. There's not much eye contact made between patients there except for the kids who all happily go about their business. There must come a point where we learn just how scary this thing that we're about to do is. The kids are of course just as drained after treatment as any of the grown ups are but they still arrive for their next stint the same way as they had the last. It's inspirational in its own lovely way.

So I lay in front of a radiation source for six minutes before, and I kid you not, they turned me round to do the other side. I felt like I was in my own giant microwave oven and that the whole thing was going to be concluded by a 'ping'. I don't know if this is maybe something I've convinced myself of but I always felt that during those sessions I could feel parts of me behaving differently, like my internal organs were all grumbling because this radiation was making them vibrate or something. I even felt warmer after it and you could see that my skin had reddened.

After the first session I got the ambulance back to the Royal and walked back to my own wee solitary room for a rest before repeating it all that afternoon.

By the second day I needed someone to hold on to whilst walking out for my lift across town and by the third I was wheelchair bound for it. After every session I just made it back conscious before completely conking out on my bed still fully clothed from my wee trip outside.

It was roundabout then that the most draining aspect of all these treatments began, the torrential diaorrheoa. Most Cancer treatments have side effects based on the fact that they kill cells that grow rapidly. Most people know about hair loss, nail damage and mouth ulcers but perhaps understandably less is mentioned of the other parts of the gastrointestinal tract that are destroyed by radiotherapy like the TBI that I had. It destroys all the mucous membranes in your whole digestive system which quite simply means that it can't cope with food of any sort really. So on top of the drugs I was taking intravenously I was given fluids and put on a fluid control chart where every ml in and out of the body is measured. It's not a whole lot of fun as a patient and also not much fun for the nurses but it gives them a quick indicator of how well your body is coping with all that's being thrown at it.

By the time of my seventh and last session I felt as weak as hospital coffee and just slept from the moment I got back until they woke me up mid afternoon to tell me Clare was back from surgery and that the Bone Marrow was away being radiated and I could get it later.