We go out tonight and breathe a little deeper

Or not as the case may be.

Read this and thought it was very interesting.

Guardian Science

Not sure it's something that will affect me directly but will definitely be of interest to people who find themselves in a similar position to mine in the near future. The topic of stem cell treatments is always going to be one that divides people but if approached with care and sensitivity it has the potential to be the greatest leap of this generation.

Now recently I've been struggling a bit with focus - I have been grasping for words mid sentence and it's beginning to bother me. I do lots of things to keep my mind occupied but the particular cocktail of drugs I take these days has left the world a little on the fuzzy side so if you find I repeat myself or make less sense than I normally do then that's the only excuse I have to offer.

Leaving, on a jet plane

Leaving Cardiff was a real wrench. I had made so many amazing friends in the year or so I was down there and it just felt like I was in the middle of something rather than a conclusion.

On the day before I was coming home I got a phone call from Colin, my PhD supervisor, to tell me to come in as he was going to give me one of his guitars so I could learn to play while I was undergoing the treatments to come. I went in to my department at the arranged time and walked in to my tiny little lab to find pretty much the whole department squeezed in so they could say goodbye. The shock I got increased when Colin handed over a lovely new guitar that they had all chipped in to pay for as well as a complete Beatles songbook which everyone had signed at their favourite (or just appropriate in the case of Rajinda who chose Blackbird because well she's a black bird) song.

Colin had picked Hey Jude and wrote just remember 'the movement you need is on your shoulders' which is a line that has always fascinated me.

Now I've got a lot to say for myself but that day I was rendered completely speechless and just sat on the bench of my lab crying and saying thanks to everyone who had came. I honestly didn't see it coming at all. I'm still in touch with many of those guys now - I hope they know just how much of a difference they made to my life.

When I got back home it transpired that my friends had a night out in Glasgow planned for their football team so I tagged along and had an absolutely fantastic night. We ended up, as was traditional, in the Garage nightclub and I even bumped into a large group of old friends from my undergrad class at Glasgow Uni. Amongst that lot was a new PhD student from America who watched as Shaun and I threw some shapes on the dancefloor and then came over to talk to me after we had worked our way through the whole 9 minute version of American Pie. She got my attention by using the chat up line 'You're beautiful'. Now for someone with as highly tuned an ego as mine that was always going to be a winner. The fact that she was beautiful helped as well.

What followed was a rather short romance that was only called to a halt by the intrusion of a bone marrow transplant. You see I thought we had several months before that was a possibility so Laurie and I had just kind of got on with things as if it was something we would deal with at the time, but a slot opened up only 6 weeks later and when it came down to it Laurie admitted it was too much to deal with. I didn't mind so much because I was happy that she was honest - it was better that than her pretending to be ok when it was too much to deal with. After all we had only met a little while before but it's certainly something that I file in the 'what if?' column.

I know I'm right, for the first time in my life

I spent a week in hospital in Cardiff basically getting all the official stuff done and getting hydrated to dilute the still ridiculous level of white blood cells in my blood. After putting my best swimmers under ice I was able to start on a course of hydroxyurea which would bring my white blood cell levels back to normal. Over the coming weeks the dose of it would have to be adjusted regularly until it was controlling the proliferation of white cells that is indicative of my type of leukaemia.

The interesting thing about hydroxyurea is the pharmacology of it. When looking at drugs you don't just need to know what the drug does to the body but also what the body does to the drug. The human body metabolises drugs into more water soluble forms so they can be excreted from the body easily. Now when this happens with hydroxyurea it gets metabolised into uric acid, which unfortunately collects in the joints of the body in the condition known as gout. So because I was taking one drug I had to take another (allopurinol since you ask) to prevent me getting gout.

It sounds like such an olde worlde condition, and it does sound better when prefixed with the (the gout just sounds funny), but it can be incredibly painful as it consists of crystals of uric acid collecting in your joints, especially the peripheral ones like the big toe.

Another thing occurred to me about that as uric acid is what bird shit consists of, what with birds not having separate excretion for solids and liquids and having a middle ground of uric acid compared to our urine. Sometimes I wish I didn't know things.

On getting out my friend Yvonne came to stay for the weekend and it was quite wonderful having her around. We didn't do much of anything except a bit of sightseeing and general mincing around but it was a welcome relief to do something vaguely normal.

I knew in these weeks after that I had decisions to make, the first of which was actually quite easy. I knew I would have to give up my studies as there was no way I could carry on with it then and it couldn't be held open for me as it was industrially funded and needed to be ongoing. What was more of a wrench though was knowing that I would have to move home. I had thoroughly enjoyed living down there and it would be very sad for me to leave but I knew that whatever treatment I was to have I would need to be at home because anything else would be terribly unfair on the family. I just had to remind myself that it was only going to be a temporary move home and I would be able to move away again when fit and ready to do so.

I was still going to the hospital day unit twice weekly to ensure the dosage of the hydroxyurea was right and to check on my general health and it was on one of these trips that the news that one of my siblings was a tissue match came through first. Initially all we knew was that there was a match, not who it was but later on that day I received a phone call to confirm that it was my eldest sister Clare who was the match for me.

I phoned home to tell the parents first and it just so happened that Clare was there so she came on the phone and I asked her if she fancied donating me her bone marrow. Of course she said that she would do it. Then something strange happened - I started phoning round everyone and as soon as I said that I had a match nearly everyone said something along the lines of 'It's Clare isn't it?'.

Now Clare and I are probably the most similar of the five of us so it made sense to me that even on a molecular level we were the most alike but I didn't expect everyone else to come to the same conclusion. Of course I would have taken bone marrow from any of them but it secretly pleased me that it was Clare, not from any position of favouritism but because I know Mark isn't fond of hospitals, Alicia knows just a bit too much about them being a nurse, and Janine was in the last six months of her nursing training and I didn't want anything interfering with that. It was just right that it was Clare.

The funny thing for me is knowing for sure that Clare isn't a tissue match for her twin brother. Of course with them being non-identical twins that was always just as likely as for any sibling but it just felt funny to me.

Knowing that there was a match and that the transplant would be taking place in Glasgow kicked me into action and I started getting ready to go home. I wouldn't finally move until January but I started getting myself prepared for the goodbyes that were to come.

I wanna be better than oxygen

Last night I got out the house for the first time in a month or so that wasn't for a hospital appointment. It was only up to my mate Gerry's house for an evening of watching football, Wii games and general talking pish with him and our mate Stephen, who has recently become a father for the second time and was much in need of some mindless chat that wasn't entirely on the topic of kids.

I had a brilliant time but was exhausted at the end of the night and have been absolutely shattered today. I did though find that I coped quite well with my oxygen on a lower level than it normally is so I could stay out a bit longer. My tiredness today didn't stop me getting up and going downstairs to spend time with my lovely new niece though. Lots of the family were in this afternoon so it was great fun being down with them all.

The weight gain program is gathering pace with several comments that I'm developing a little tummy. Here's hoping that I reach the arbitrary line in the sand my respiratory consultant chose for me to reach in the next week or so before my next appointment. I have to say I'm feeling so much better now I don't look like I've got a ribcage that could be used for percussion. I'm finding myself eating a lot more since starting the anti-psychotics so they're doing the job they were designed for. Hopefully I'll be able to get by without using the overnight feeds sometime soon but I'll carry on with them in the meantime until told not to.

Whoa mercury, shooting through every degree

It's awful warm at the moment and while it seems terribly churlish to complain about such a thing in Scotland I'm going to. You see my room is south facing so I get the sun streaming in all day long making the place like a regular greenhouse, which isn't the comfiest of states.

I'm toying with the idea of going outside for a wee bit today but will have to put on factor overcoat sunscreen as some of my medications leave me at risk to damage from UV light. My skin is already in a fragile state what with rejection issues so I don't think it needs any more grief with burning on top of that.

Anyway, enough of my infernal moaning. Today is a good day. Yesterday saw the arrival of my new niece. Chloe Frances Kilday was born at half past nine yesterday morning. 7 lb 9 oz for all the stats monkeys out there. Another nephew would have been perfectly fine but I was secretly pleased that it's another niece to balance things out to two of each.

I'm not allowed up there to visit for fear of infection so my sis-in-law phoned me yesterday to tell me I'll be hte first place they visit when they get out, which is very sweet indeed.

Anyhoo, here's a photo of her after her first bath:

Can't wait for them to get home so I can get a cuddle off her.

Drugs are bad mmmkay

I'm on loads of medications. So many that I thought I might take a wander through the list and let all you people out there know what they're all for:

Cyclosporin A.

I take this to mediate my immune system - this is necessary because my immune system is trying to kill me because it can't tell the difference between self and non self.

Side effects (aside from leaving me open to infection) include excessive hair growth. This manifests in an all over soft furry feeling to me and having to shave more of my face than I used to have to. The dose I am on currently is low enough that it's not that bad but having been on it before I remember when my eyebrows joined up with my hairline - it was all a bit Teenwolf.

Now because I take a drug that suppresses my immune system I have to take a load of drugs to protect me from infection. These are:

Co-Trimoxazole Antibiotic

Azithromycin Antibiotic

Aciclovir Antiviral

Voriconazole Antifungal

As well as those antibiotics that I take daily I have to keep a store of both Moxifloxacin and Co-Amoxiclav for those occasions when an infection does break through that barrier.

The side effects of these drugs are fairly minimal but the antifungal does provide me with occasional hallucinations (mostly aural but occasional visual ones too). They are mild but they don't half interfere with your perception of reality when they do happen.

The other issue from taking all of these things is nausea and for that I take anti emetics like Ondansetron which are an absolute godsend. The damage caused to my stomach by radiotherapy from the bone marrow transplant means I also take Omeprazole.

As well as the Cyclosporin I have to take Gleevec to mediate my immune response. This is the drug I was originally going to be on the clinical trial for if I didn't have a tissue match for the bone marrow transplant. I take it not for it's properties regarding CML, but because it is effective in mediating rejection issues within the lungs, which is essentially what is happening to me. My body seems to think I've had a lung transplant already and is rejecting these ones, even though they really are mine.

Taking drugs for their side effects is a common theme amongst my little assortment. As well as taking Azithromycin because it reduces inflammation in the lungs and Gleevec for the reasons mentioned above I am now taking an anti-psychotic called Olanzapine because it has a side effect of inducing weight gain, which I need before surgery will be safe to undertake. The doses I take of these drugs is different to the normal therapeutic dose for the conditions they're designed for so they don't affect me too much otherwise.

All these drugs mess with the balance of things in your body so much that I've developed high blood pressure, for which I take Perindopril. I also have three different types of inhaler (Spiriva, Symbicort and Salbutamol) to aid the breathing process as well as my constant supply of oxygen and my bottles of food which go directly to my stomach via my PEG tube. I also have assorted creams for my skin and eye drops that I use regularly due to extremely dry eyes.

At the moment I have to take an average of about 20 tablets a day, which is undoubtedly a lot but there have been times when I've been over 50. That was when we were adjusting doses of certain drugs though so I had to take lots of small tablets of the same drug and so is a slightly false high point.

It's a lot to deal with certainly and always making sure that you've got enough of them requires a certain amount of organisation but you get used to it very quickly.

There was a point about 5 years ago when I got down to requiring only two tablets a day. It would be amazing if I ever got to that point again but honestly it has become so much like second nature to me now that it wouldn't bother me having to take drugs for life if it meant I was well.

It really is amazing what we can get used to.

Here's a pic I took of them all a while ago - some have changed but that's fairly representative of my own little pharmacy.

To sleep; perchance to dream

I'm feeling a bit out of sorts.

I think it's related to the fact that my sleep pattern quite simply doesn't exist. I sleep at varying intervals for about two hours at a time only. I'm also having incredibly vivid dreams all of which are related to people in my life in various odd scenarios that it seems my task is to resolve. Kind of like episodes of Quantum Leap, although without Al or Ziggy to help us along the way.

The details always disappear within minutes of waking but I remember that there is an overarching theme and that they're always about friends I've had in the various places I've lived.

I figure that this is related to the medication I have to take. On top of the anti-psychotics I am taking (for their side effect of promoting weight gain) and anti fungals which have the side effect of giving occasional aural and visual hallucinations. My mind has been going wandering a lot recently and it makes it terribly hard to focus for any length of time.

This I have found though is a perfect state of mind for watching the World Cup group stages. A lot of the games I don't care about in the slightest so I get to watch them from a totally detached position and don't have to invest anything in it at all.

The down side though is that I'm finding it hard to concentrate on the new Mario game. Still enjoying it thoroughly though - it's absolutely incredible. I am grinning like a child playing it as expected.

On the down side today is one of the days when the skin rash has actually been mildly annoying. Here's a pic of it on my right arm:

It is still mild enough that treatment with steroids calms it down but it still bothers me that my immune system can't recognise that my skin is my own. I also wish the steroid cream didn't smell - it's not terrible but it's just mildly irritating and persistent.

A History of Leukaemia

So if the maternal grandfather was the man who makes me think of transplants, it's the paternal grandfather who makes me think of leukaemia.

He had it at a time when treatments were much less sophisticated though and therefore didn't have anywhere near the chance my generation has.

You'd be forgiven for wondering whether there is a hereditary link between what he had and what I had. Also throw into the equation my cousin Stephen who was diagnosed with leukaemia in his mid teens and it seems perfectly logical. It turns out there isn't though, at least there is no direct link between the three different types we've had.

Mine, for instance is dictated by a mutation so while it's genetic in that it is related to an issue with my genes and their expression and replication, it's not something that is passed on. You could argue that members of this family are predisposed to such mutations but proving that would be difficult I think.

Leukaemia is a broad term for a range of diseases and there are so many types of it that approaches and treatments for each one that even other patients of what look to be similar diseases can be markedly different.

Stephen and I were in the same year at school so it's a very hard thing for those people who were in our classes to understand that the two diseases aren't connected. It's simply easier to think that the two things must be related than to think about the intricacies of it all.

We have lots of things that we can each relate to and compare from our assorted travails but equally there's many things from his treatment that I have no frame of reference for and he has none for a decent amount of mine as well. For instance he had to have very aggressive chemotherapy where I only had a two day, intense course; He had localised radiotherapy where moulds were made to ensure localised radiation to where it was needed and I had total body irradiation; he didn't have a donor and so couldn't get a bone marrow transplant and I was lucky enough to have a match and to get one.

It's always interesting to talk to him about the various aspects of it all, especially the differences. Talking about the similar aspects only gleans a little understanding but talking about the areas that differ is where I developed a greater understanding of the treatments and processes I was receiving.

So when I do explain to people that it was sheer, blind chance that two kids from the same family in the same class at school both ended up with leukaemia they never fail to comment about how bad luck it is.

Strangely perhaps I find more solace in thinking that it's blind chance rather than the plan of some creator. Contracting leukaemia didn't stop me going to mass because I felt like God had forsaken me or anything as grandiose as that. It was initially because I wasn't allowed to for fear of infection but mostly because I found that I had developed a greater faith in people than in religion so didn't need it anymore.

I understand why other people may and don't think any less of them for it but it's simply not for me anymore. I don't half miss the hymn singing though even that has lost something since my dad died. We used to stand and just belt them out, caring not a jot. All the other pageantry I can live without.

A history of transplants

This is not a normal family medical history. Not by any standards.

I of course have already had one transplant (thanks sis) and am hoping to have another fairly soon but I am far from the first person to be on the receiving end of one in this family and I'm quite some distance short of the strangest.

We'll bypass the frankly amateur efforts of my father and some of his siblings who each required grafts of veins from their legs to fix their failing hearts - that's not a real transplant anyway.

No, lets go instead to the maternal grandfather shall we?

His is the sort of tale that hopefully is very much of its time. He was a Polish man who was going to study in a seminary to become a priest. It was his misfortune to be taken by the Russians (who weren't big fans of religion) to one of their Gulags
where he was imprisoned until it was attacked by Germans and he made his escape.

As escapes go it wasn't tremendously successful as he was now in woods with nothing to eat and was freezing. Before long he was taken by the Germans. At first, due to his ability to speak German and his mild accent, he was taken as being a captured German and so was treated in the camp infirmary until he got better.

Eventually he did improve and by this point the Germans had realised that he was in fact not one of their own but in the short time they had looked after him well they noticed he had a terrible stomach condition that would likely kill him. At this point they took it upon themselves to perform surgery on him where they would replace his stomach with that of a pig. It's long since been proven that pig tissue can be used for grafts on humans due to the tissue type being so similar but this was almost certainly either the very first or one of the first examples of it ever being applied. The surgery was successful and even though there weren't anti-rejection drugs or any such thing available he survived for forty years after it was performed.

He made his second escape from this camp when he was well enough and the Allies had attacked the camp and the Germans had fleed. This time he managed to stay out on his own and travelled down as far as France where he lived with a family until the war ended and he was given the choice of repatriation or to go and live in Scotland or Canada.

He chose Scotland and soon met up with my Grandmother. They were married and had their only child, my mother, in 1950.

I remember only a little of him as I was only 4 years old when he died but what I remember more than anything was how gentle a man he was. It seems to be a common character trait of those who survived those places. He clearly saw some incredible things in his life and while part of me would love to hear more of his life story I know I would never have asked him. I know this story only from my Gran telling me it before she died.

She says he was adamant that even though the methods that had been used were deeply sinister, it was the German doctors who saved his life. He thought no ill of them even though what they had done to him was well beyond the pale in terms of medical ethics.

It's always been something that has left my brain doing somersaults as well. My very existence is down to a bunch of Nazis who took it upon themselves to perform radical surgery on a prisoner of war.

I know that in a lot of the camps where such testing was commonplace many of the doctors took to burning the evidence of their experiments for fear of being charged with war crimes. I wonder how many other things the Nazis found out through their hideous experiments that was lost in this way and wonder if any good could have come from all that evil. It's a deeply unpalatable concept to try and address so it's one I try not to spend too much time on.

It's mostly when I can't sleep at night, which is exactly what's happening now.

And now, to bed.

P

Needles, nudity and necessities

The first week of being a Cancer patient was very odd indeed. A lot of it was spent with assorted doctors prodding me in various states of undress.

A lot of the people coming to visit me were visibly shocked by what was going on, not least because the last time most of them had seen me I was throwing some shapes on the dancefloor in the student union. At one point I was up on Charlie's shoulders while the DJ fired the dry ice machine in our direction. We were the only people on the dancefloor right then.
This was on the night before diagnosis, when I had decided just to go and enjoy myself and not to worry about blood results.

There were so many people coming to visit me that we had to commandeer the relatives room on a few occasions as you can only have a few people round a bed. That was also where I was allowed to and use my mobile phone to keep in touch with everyone at home.

So all the tests and treatments began with the leukopheresis I had on the saturday to harvest the excess white blood cells from my blood. On the monday I had my first ever bone marrow aspirate and trephine. The former of these is where they use a rather large needle to pierce your hip bone and collect a sample of your bone marrow, and the latter is where they chip a piece of your bone off from the same site. It's not a nice process and one which the other patients in my room told me most people ask for sedation before going through it. It's also not nice for the doctor performing it as there's a certain amount of brute force required to get a chip of bone out. I think sedation for this sort of procedure would be beneficial to both the patient and the doctor. The reason for these procedures was to confirm the diagnosis of Chronic Myeloid Leukaemia.

What they are looking for first and foremost is what is known as the Philadelphia Chromosome as it is this abnormality that causes the repetitive cycle of cell division that is CML. It involves the translocation of genetic material, which in turn leads to faulty proteins being formed. It's a mutation and nobody knows what the trigger is.

I spent a lot of time wondering if it were perhaps an environmental trigger as I have spent a lot of time in chemical labs. Of course there is little chance that had any effect as Health & Safety rules regarding the chemicals I had used are very strict. The other thing to wonder was that it really was blind chance that this mutation occurred in me.

No ability to heal faster, manipulate metal, ability to control the weather or telepathic powers for me. No, I was a shit X-Man. My abilities were rubbish.

As soon as the confirmation that I did indeed express the Philadelphia chromosome was confirmed we began to talk about what the treatments available were. There were many, but only two interested me. The first was a bone marrow transplant which was dependent on one of my siblings being a tissue type match with me, and the other was on a clinical trial for a drug called STI-571 (now known as Gleevec). The clinical trial was interesting because it's a drug that, when it works well, simply renders the condition as manageable so that you can just go on with your life as normal. Think of it as being akin to someone dealing with diabetes for instance - they have a condition that needs managed over their life. There is a certain appeal to this but it has something missing that only the former of those choices has, the word cure.

A BMT could cure me so that was the one for me.

So, that decided we then set about getting me well enough to go home. For that we needed to get my white cell count down to a sensible level, which meant a course of hydroxyurea. Before we could start that though I had to address something. The treatments I was about to undertake would almost undoubtedly make me sterile so for their to be any chance of me fathering any offspring I would have to put my best swimmers in storage.

The first time I was to go I made the mistake of telling my friend Hayley, who had done some clothes washing and brought stuff up for me, that this was to happen the next day. In my bag I found she had left a pair of crotchless knockers for a laugh. She's a very odd girl but wee things like that made me giggle the whole week or so I was a patient there. On the morning itself I got text messages from about 20 different people all telling me to have a good one or to think of them when visiting the clinic. It was exactly the sort of thing that needed to happen to let me not take it too seriously.

The fertility clinic is one of the most depressing places I've ever been because nobody wants to make eye contact with anyone else so I must have looked a right idiot casually wandering down in my sandals and shorts and t-shirt. There's an incredibly odd feeling of pride when a nurse tells you that's a very good sample, although deep down you know she probably says that to all the guys.

I had to do this twice as they like to have two different samples from you before they're put in the wank bank for safe keeping. The second time it wasn't that my peers knew where I was going that made it difficult, it was the fact that I had to explain to my mother why I wouldn't be there if they visited at a certain time. I'll be down putting your potential grandchildren under ice was how I described it I think.

When they came down my supervisor Colin had put them up at his place in Caerphilly which was just typical of the man. He is an absolute gentleman and I hope he has some realisation of how much those actions made things easier on the parenting team but for me as well.

X-Ray specs

Have you ever felt like someone sees straight through you?

I got an overpowering feeling of this on sunday when I had old friends from uni over visiting with their kids. Amid the carnage Yvonne simply asked me 'So, how are you really?' and even though it was a simple question it knocked me sideways. I could actually feel tears welling up and everything. Thankfully though her daughter made an attempt for freedom right at this moment and she had to rush after her and I never had to answer.

And here's the thing, I hadn't actually realised that I wasn't quite right. I wasn't aware that it was a false front I had been putting on for everyone. I certainly wasn't expecting anyone to call me on it.

So the reality is that I'm struggling to not be resentful about the fact that my life is on hold again. I've often felt that I got robbed of a decent portion of my twenties and even though it's terribly clichéd to say so I've become sick and tired of being sick and tired. It's not so much a 'why me?' feeling as an 'Oh for fecks sake, not again'. I try very hard to not take my frustrations out on those around me but I'm only human so I know mistakes have been made on that front. For what it's worth my family are tremendous at recognising when I'm not quite right and leave me alone to get through it, which seems to work very well for us all.

I'm aware that sometimes I editorialise what I write down and it comes across that I'm dealing with everything brilliantly, and while that's partly true, it's only right and honest that I detail the ways in which I'm not doing so well. When I get my head around them myself I'll share.

Weighting Around

Every month I go to see the doctors at the Beatson Oncology Centre and they assess my condition in regards to the level by which my errant immune system is attacking my body. The lung damage, as I've mentioned before, is permanent but the manifestations of GvHD on my skin are reversible and so far topical treatments seem to be dealing with that ok. Having said that it has surfaced on my scalp for the first time which is incredibly irritating but I have a lotion to try now to see if that helps.

For the most part it's just my arms that are affected by a rash but my skin is now very sensitive and flares up red with even slight contact and remains that way for a while after.

The other issue that today threw up is that I am still a little short (boom boom) of the weight I need to be before I can be considered for the transplant. I am closer to it but I have an appointment at the end of the month with the respiratory folk (who ignorantly don't answer questions from my other doctors about aspects of my treatment) who control whether I get referred so I want to reach their mark within that time or it may be another three months before I get referred. It's not the end of the world if I don't make it but I am desperately keen to get things moving now. So I have been prescribed a drug that should artificially inflate my weight for as long as it's needed. It's an anti-psychotic drug as it happens but one of its side effects is weight gain so a small dose, which won't have a psychological effect, should be enough to push my weight up a little bit higher and hopefully do it quite quickly.

Any time I mention my weight problems and how difficult I find it to put weight on there's a rush for people to tell me how lucky I am and how I can have some of theirs if I want it. Perhaps funny the first time but it begins to wear slightly at the four thousandth telling. I know they're just trying to lighten the situation but I sometimes think people don't realise that weight issues aren't the sole preserve of those with too much of it.

It's almost like there's a pecking order where the overweight carry more clout than the underweight.

Oh aye and while I'm ranting I can do without hearing that I must rattle when I walk due to the amount of tablets I take as well. I'm not sure that's ever been funny to be honest.

Feel tired after being out at the hospital today - may well fall asleep quite early tonight.

You spin me right round

The morning after diagnosis day was a pretty uncomfortable one. I mentioned that I had a disproportionate number of white blood cells and we had to set about doing something about this. I was on continuous fluids to dilute the blood so it would function better than it had been with all those white cells making it more viscous, but my white blood cell levels were still incredibly high.

The method of choice for reducing them was to take my blood out and separate the white cells in a centrifuge before giving me the blood back. This also has the benefit of being a back up supply of your own white blood cells that can be used for later treatments if necessary.

The discomfort of this procedure was in having to sit with both arms in front of me for three hours and not being able to bend them as I had large bore needles in both.

While I was lying there watching my blood come out and go back in over and over again my PhD supervisor Colin arrived. It's to his credit that he didn't say 'I told you so' as he had been on at me for months to go and see a doctor as he had thought there was something wrong. Of course he didn't imagine anything of this magnitude but he had at least spotted something while I was persistently ignoring it.

By this time all my family had been informed as to where I was and what was going on so I spent quite a healthy portion of my time on the phone to them all. My younger sister Janine was living in Manchester at the time and as soon as she could get off work she hopped in her car and drove down to see me. My parents would come down a few days later.

Speaking to the family was absolutely fine. I think they had each been prepared by the parenting team so it was just a matter of reassuring them.

Even at this early point the protocol was for each of my siblings to get tissue typed to see whether any of them were a match for mine as the option of a bone marrow transplant had to be investigated. Janine got blood taken when she was visiting and the rest of them organised a trip to the centre in Glasgow to get theirs taken.

The next few days involved me doing even more phoning around to speak to people to let them know. Most of these went not too badly and the shock was met with resolve but I made a simple but crucial error on one of them. At the time my mobile phone contract allowed me to make free calls after 7pm so my decision to phone my friend Eileen before that time was immediately seized upon by her answering and defensively asking what was up. Telling her was horrendous because I had left myself with no way of trying to soften the blow and just had to blurt it all out. Eileen and I had gone out when we were 16 and I think I can safely describe her as my first love. I think it hurt her even more because I had been through to see her for the weekend only a few weeks before and had seemed fine so it was really hard for her to take - there was much in the way of tears and snotters. It's undoubtedly an odd situation to find yourself being diagnosed with a horrible disease yet being the one who consoles the people you have to tell. It stems from the fact that you've had time to come to terms with what's going on but they haven't so their response is like an echo of your own response to the news.

While it's essentially easier to have everyone being pragmatic and positive about everything there is also something really affirming about people crying over you. There's a primal honesty about it and it's not something I think should ever be sneered at. If you're someone who can keep a lid on all your emotions then good for you but there are those who either can't or just choose not to keep it all in.

I was to be in hospital at least a week and an awful lot happened in that time. All things considered there was a lot more hilarity than I would have expected in a ward like that. Details to follow......

Wiiiiiiiiiii

So this coming friday the football World Cup starts, and while I am excited about that as I always am when it comes around, there's something else happening on friday that has me even more excited.

It's the first time in probably fifteen years or so that such an event has caused genuine excitement in me.

It's the release of Super Mario Galaxy 2.

Yes, I am perfectly aware that I am a man in my thirties.

I am also aware that the first Mario Galaxy game made me smile more than I think any computer game has ever done and it also made me giggle like a schoolgirl. At a time when I was stuck at home against my will, and still pretty resentful about it, it lightened my spirits dramatically.

I've always been a huge fan of the Mario games across all the generations of nintendo consoles but there's simply no getting away from just how genuinely affected I was by this game. It is a truly tremendous piece of game design which had me racking my brain as well as marvelling at the absolute mayhem of it all. It did worry me slightly that for a little while I was looking at the world through Mario's eyes though. If I saw two buildings quite close together I would think that I could spring off each of the walls in turn to get up to roof level to see what's there.

I'll hold off on the big, bushy moustache though.
I can't promise I won't buy another pair of dungarees though.
Ah, my dungarees. Why did I ever get rid of you?

I am so very much like a child before Christmas and I don't care.

They call us lonely when we're really just alone

Things are very much different now from when I first fell ill a decade ago.

Everyone's reaction to it is different for a start. When people came to visit me back then there was never any doubt that I would be fine and that this was just a bit of a stumbling block to get past. I felt pretty much the same way myself. I was a young man, and faulty blood cells aside, I was in very good shape so the treatments I was to receive weren't all that worrying.

Now all these years later we've all been worn down a bit by it. I'm not as strong as then physically (although I am even more resilient) so there are more health issues to consider for any treatments I have to undertake. I can see in some of my friends that they're a lot more worried now than they ever were back then. As a result of this some of them find it incredibly difficult to come and see me. Now that's not to say that they don't come and visit but there's a notable difference in the regularity with which they do. That's not all down to their fears and their hatred of seeing me in this state but also because they all have grown up lives and the responsibilities that come with that. Back then we were all starting out in our careers and were mostly single and with a lot of spare time on our hands. Now they have their spouses and their children and significantly more in the way of work commitments. This means that I don't get to see them as often as I would like, but I understand only too well how real life can often get in the way of the things you would like to do. With each visit everyone apologises that they've not been around more but I honestly don't mind. It's up to them when they can make it.

Things aren't helped by the fact that my two closest friends who were such a massive part of my visitation schedule back then now rather selfishly live in different countries. I miss them coming round here on friday nights and getting drunk and eating all my sweets.

So all this real life stuff means I have much more time on my own than I have probably ever had in my life. My family are about a lot of the time but even accounting for that I am on my own a lot. I've gotten rather good at keeping myself company so I don't really feel lonely. Not yet anyway.

Every breath I take

It's bad enough under normal circumstances trying to breathe with faulty lungs but over the last few days I've been feeling a bit unwell and have found it even harder to catch a breath.

It doesn't feel like anything terribly serious but it's been enough to completely floor me. Since sunday night I've been awake for the grand total of eight hours. When I'm like this my body seems to totally shut down.

What hasn't helped today is the oxygen concentrator (which I refer to as Darth Vader due to the asthmatic pulsing of breath it makes when working) I have in my room to help me breathe has broken down and I've had to connect myself to the spare cylinder I have for moments like this. The machine made some pretty interesting gurgling noises during the night and I had to turn it off and reset it a few times before finally giving up and getting the spare this morning.

The engineer will be here later to sort it thankfully.

I'm beginning to feel vaguely human again but know that it will be days before I feel close to my normal level. This is just the reality of having a suppressed immune system. I am wide open to any infection that's going and I do get most of them. It is of course quite depressing but you simply have to be pragmatic and just let it run its course. I am annoyed though because I'm meant to be going out at the weekend to see my old friends from university and this might be a spanner in the works. I'll speak to the docs and see what they say about it.

And now I'm away back to sleep for an hour or so.