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.

Don't let it blow your mind away

My previous post about my first trip to the Beatson will have learned a little about the protocol pre transplant. Day zero is transplant day so that first trip there for measurement and getting talked through what is involved in Total Body Irradiation (TBI) happens on day -14.

Day -13 was my last night out on the town with Dave.

Day -9 was the day reserved for insertion of my Hickman line

A Hickman line is a tube that goes into your chest and connects to the either the superior vena cava (the main vein into the heart) or the jugular vein from which you can either take blood or give intravenous drugs.

As far as inanimate objects go it is the piece of synthetic material I have the most affection for in the whole world (yes, even more than my lego star destroyer). You see having one of these things in means that you don't have conventional lines in your arm replaced so regularly. Where it is especially important is for Chemotherapy delivery as giving it through the smaller needles required for veins in your arm can cause massive damage to them so having this strange little thing dangling from your collarbone is an absolute godsend.

The surgery to insert the line is done under a local anaesthetic and is quite a strange experience for it. Being awake while a surgeon has to get up on the table to thread something into you while talking to you to try and keep you calm is very odd indeed. The surgery itself didn't stress me out in the slightest and I actually dozed off at one point which I'm told is just weird (I've also been known to fall asleep in my dentists chair). Previous to the surgery though a line was placed in the back of my hand and the junior surgeon responsible didn't realise he had speared the vein and injected ten mls of saline solution into the back of my hand. This hurt. A Lot. Probably more so because it was so very unexpected. After that little mishap though it was just fine.

It takes a bit of getting used to obviously but then quite suddenly it feels like part of you. The line I had is referred to as a double lumen which means it splits into two separate lines, one of which is devoted to giving meds and the one from which blood is taken. This is because there are some drugs that actually bind to the lines themselves so if you want to measure accurate levels of drugs in your blood you want to ensure you take blood only from one where no drugs from the line could influence the result.

From each of the two lines there was another splitter attached so at any time I could have four intravenous lines attached. This was quite commonplace it was to turn out. In fact at one point I had all four of those and a morphine syringe pump piggybacked onto one so I had five different IV pumps pushing drugs into me.

Now even though I have said it's something you very quickly get used to that doesn't mean there weren't mishaps along the way. On a few occasions getting out of bed during the night to go to the toilet I actually stepped on all the lines and tugged at my chest. I won't tell you the words I used at the time but it was a rather painful mistake to make. Thankfully the line didn't move under this stress but it was a very painful reminder to remember my surroundings a bit more.

Now it might have occurred to you that having a gaping hole in your chest isn't a great idea and you'd be absolutely right but great care is taken with the site itself and with the connection of the drug lines. Everything is conducted under absolute sterility to ensure that no infection occurs.

So having this line in place meant that on day -7 I could start the preparative Chemotherapy I was to have but before all that I got to go home for one last night in my own bed.

Look around you, all you see are sympathetic eyes

I read an article during the week about young people blogging about their lives with Cancer and an alarming thought came upon me. At 32 I can't really in all honesty classify myself as a young man and it's now been nine years since I had any trace of Cancer in my body.

So why is it that I still classify myself as a Cancer patient?

I think that, despite my feelings about it for a good few years, I have come to terms with the fact that it's always going to define my life and that's been a very difficult process. I was so adamant that I would have a life after Cancer that had no hangover from it at all but I had to slowly come around to the fact that while the Cancer had gone the treatments needed to rid me of it had done some serious damage and it's that damage that makes me still associate myself with Cancer.

The reason that so much damage was done is because of the nature of the treatments deployed to treat Cancer. Consider how much of a treatment that it takes to kill you as well as the amount that it takes to produce the desired effect and think of these as the lethal dose and the therapeutic dose. In any normal, everyday treatments the difference between these two doses (called the therapeutic index science nerds) is large and so they are safe to use. So the therapeutic index is like the safety margin. The issue with Cancer treatments is that to be effective the therapeutic dose is alarmingly close to the lethal dose and so the therapeutic index is very small so there is little safety margin. Of course where Cancer is concerned the use of such dangerous treatments is pretty much because without treatment the patient will die anyway so it is worth taking the risk.

What it also means though is that other things get damaged because as well as having extreme therapeutic effects they also have extreme side effects. That's where most of the damage is done.

I never kept a blog at the time but I did write about many aspects of my treatment and in the next little bit I plan to go through the whole bone marrow transplant procedure with you. Hope you enjoy it.

Don't be afraid to be weak, don't be too proud to be strong

A funny thing happens when you get diagnosed with cancer, people start talking about you in terms of how brave or how strong you are. Now as well intentioned, and of course flattering, as these comments are they're based on a flawed starting point. People say these things because they think that they wouldn't cope with the same news as well as they perceive you to be doing, but that just plainly isn't true. People cope with what gets thrown at them but when you're one step removed you in some ways feel it much harder.

Where a patient will become pragmatic and look at what needs to be done, the friends and family can afford themselves the luxury of getting very upset about it. I know for instance that I would find it much tougher if one of my family or friends was seriously unwell because there's nothing I could do to make it better but I know what I need to do myself. And that isn't, contrary to what people say at these times, about being strong.

There are times when you have to be as meek as you've ever been and just let things happen to you, and these are just as often as the times you need to be strong and fight. Nobody prepares you for that though, it's a lesson learned through getting it wrong. Even then there is no guarantee that doing everything right will provide the correct result. I've shared wards with people who have fought when they needed to and just took the pain when that was what was needed and yet didn't survive. I've also shared wards with people who didn't take things as serious as they should have yet made it almost unscathed. Sometimes it's just your luck and there's no preparation for that.

One thing that surprised me about my own treatment is just how annoyed my consultants have got as time has passed. I've pretty much done everything by the book yet things haven't quite worked out as well as they hoped. The consultants you see get to treat you as human beings - the more junior doctors can often treat you with a certain distance as it allows them to reach conclusions more accurately if they aren't swayed by personal feelings towards you but for the consultants that isn't an issue as they have the experience to know they'll make the right decision anyway and so can afford to treat you as a human being rather than just a bag of symptoms. At least that's what all mine have done.

So if I have been brave and strong it's just because that's what I needed to be at the times required and you'd be just the same if it were you. Unfortunately I can't guarantee I will be should any such thing happen to you - I'll probably be in bits. I found that out when my friend Ciarán relapsed a few years ago and then suddenly died and then again a few months later when my dad died after a short battle with a few forms of Cancer. I didn't feel particularly strong or brave after either of those episodes regardless of what people told me.

A vision in love wearing boxing gloves

I mentioned before that leaving Cardiff was a real wrench and one of the ways in which it was so was in that I was leaving behind the medical team who had dealt with everything to that point. They had told me of the diagnosis and helped me through all the decision making processes, yet I was now leaving this group that I trusted implicitly.

When I got home one of the first things I did was arrange to meet with the consultant to whom I had been referred in Glasgow. It was the oddest half hour I've probably ever had. In that time Anne Parker told me on eight separate occasions that I could die from the treatments alone never mind the disease and made it perfectly clear that Clare would be treated completely independent of me and if for any reason whatsoever she decided not to donate her bone marrow, no debate would be entered into as even though she was my sister her welfare were of the same importance as mine.

I had got used to the amount of information that can be thrown at you in appointments with consultants and was significantly better at being able to recant the information back to everyone after, but even I was slightly taken aback when Anne told me there was a slot that had opened up six weeks from then if I wanted to take it. I really didn't expect things to progress at the rate it was going but I phoned Clare and she said that was absolutely fine by her and arranged for her to get in touch with the team.

Over the next month or so I had to get a few things sorted out, not least of all was moving the last of my stuff back from Cardiff. We made a weekend of it with Dave, Owen and myself taking my dad's van down to get my gear but stopping off halfway at Warrington where our friend Lynn's parents lived for the night. We would stop there again on the way back up as it was also Lynn's birthday that weekend. We had an absolutely fantastic time on that little road trip, the messy details of which aren't really for this blog.

On returning I had to visit the Beatson Oncology Centre at the Western Infirmary to get measured up ahead of radiotherapy. I was still seeing Laurie at the time and had stayed at her place the night before as she lived right next to the Beatson but went alone, as it's been my tendency to do. I know a lot of people like to have someone along with them for all their appointments as they ask things you might not think of as well as remember the things that you don't but I prefer to be on my own.

This appointment wasn't without it's concerns. When I had been handed my treatment protocol it had this entry

Now TBI I understood to be Total Body Irradiation which is a scary prospect but it wasn't that which bothered me. BOC stands for Beatson Oncology Centre, which I knew to be where I was to go for this but for some reason I got all outraged that they were going to be measuring me for a wig. I had no desire for that and was going to let them know in no uncertain terms what they could do with their wig. That was until it was pointed out to me that WIG simply stands for Western Infirmary Glasgow, the site of the Beatson. It had nothing to do with wigs at all. What an idiot.

So I went there feeling rather sheepish but in all honesty I probably would have been that way anyway as it's a hell of a place to go to. I was measured incredibly accurately whilst lying in a very particular position on a bed, which would ensure that I got the correct dose of radiation and that it be equally distributed through my body. The room where you get the radiotherapy has many moulds for people who are getting targetted radiation on very specific areas of their body.

I went in there knowing that these moulds ensure that no other tissue is damaged by the radiation so I couldn't stop thinking about the fact I would have no such thing. I was deliberately exposing all of me to these beams. Then, more than any other time I knew the risk I was taking.

I went to meet Laurie for lunch and headed home to get my head around it all again.

To help the process along Dave decided that he and I would go out on the friday for a bit of a last hurrah before all the bad stuff would really start. That was the day Laurie and I broke up but it didn't detract much from how much fun we had. There was some bad dancing, some pool playing and as was common there was a fair bit of karaoke - I did a wonderful job of Raindrop's Keep Fallin' on my Head as well as Aztec Camera's Somewhere in My Heart.

We ended up a terrible mess but it was exactly what I needed just then.

After that the serious stuff began.

Don't be too black, don't be too gay, just get a little duller

When I go to the respiratory clinic at Glasgow Royal I have to take a wheelchair with me. I can walk a little but it's a hell of a distance from the carpark to get to where I needed to go and I simply can't walk it. I hate it but have got used to being pushed about now and don't get all huffy about it.

I noticed something very odd yesterday though - the number of people who smile at you when you're wheelchair bound is quite startling. Often there's a little nod of the head as well. I don't recall people being so friendly when I've been walking about.

I don't want to analyse it too much to be honest, I was just amused by it.

So the craic from the hospital is that they are now happy with my weight and are happy to put me forward for transplant, but we now need to repeat a lot of the tests we had done 6 months ago so they're more up to date which will take a few weeks and then I go back to the respiratory consultant in 4 weeks to tie up the referral protocol and it gets sent away to Newcastle.

This is genuine progress and I am thrilled although it does mean I have to do lung function tests again which I loathe.

The last set I had done weren't fun and this won't be any better. One of the tests last time I recorded a figure of 16% of what I should have been able to achieve with functioning lungs. Numbers like that are pretty terrifying but explain a lot.

I had a look at my last CT scan as well and the subtlety of the damage is amazing. It's all in the smallest structures within the lungs rather than being something clear and obvious.

So there's real, tangible progress now and it's made a difference already. I just feel happier, although that was also aided by my best friend being home from Bratislava over the past few days so I got to spend some time with him.

Still tired though, and with that in mind I'm off for a snooze