When I was born they looked at me and said...

...what a good boy, what a smart boy, what a strong boy.

I have an uneasy relationship with Valentines's Day. It's given me some of my finest memories of shared intimacies with various girlfriends but it is also incredibly bittersweet because of a single Valentine's Day when I realised that the relationship I was in (with the previously mentioned Sam) had to end because it didn't move me the way it used to.

It was the longest relationship of my life, even now, and the real burning sadness of knowing that the love that had been so fierce had faded to the point where I wasn't excited about opening my card from her. We struggled on for a few more days fighting to keep it going but we both knew it was done. Don't get me wrong I still loved her but neither of us was built for a long distance relationship and it was doing us both real damage. In the end it was a song lyric that prompted me to make the decision to finally cut the cord. The line, since you ask, is from Crowded House's Better Be Home Soon and it goes 'It would cause me pain if we were to end it, but I could start again you can depend on it'. It just resonated perfectly with the moment.

There was no chance of a complete break from each other simply down to the circles we moved in so we decided that, tough and awkward as it may be we would fight to remain friends, and I think we've successfully done that. It's not been all easy going and we've definitely driven each other mental at points over the last decade or so but we remain close still. We don't get to see each other regularly unfortunately but Sam still remains one of the first people I go to if I feel I need a kick up the arse as she is wonderfully clear and won't pander to my feeling sorry for myself. I still love her dearly but not in any creepy ex-boyfriend way, but in the way that (I hope) we both know what we meant and continue to mean to each other.

I wondered once a while back what my life would have been like if I had been sensible to go and register with a doctor when I moved to Cardiff, as they would invariably have found the Leukaemia even a year before they eventually did, which would have meant I would have had a girlfriend with me all the way through my treatments. On reflection though I concluded that the best thing to happen was what actually did as I got to spend a good wee while taking advantage of all the trappings of a single man in a different country with an accent that, for reasons I don't understand, seems to attract women, and Sam got to move on to get together (eventually) with the man that is now her husband and dad to their son and upcoming new child. You see I know just how much me being ill hurt Sam; I saw it in her face every single time she came to visit. I could even hear it in her voice when she occasionally phoned me on the ward post BMT. I am sure she would have been brilliant but I rapidly realised when thinking of this abstract idea, that I didn't want it for her, or anyone for that matter. I had a few people showing an interest in me at that time and I couldn't help but think it was out of pity so I never entertained them. I've done the same this time round even though I know it's a horribly cynical outlook. So yes, she'd have stood by me and come to as many appointments with me as possible and in general looked after me amazingly but I didn't want it for her in this imaginary scenario. Of course none of this happened, I didn't register with a doctor and I was really careless with the feelings of the woman I loved but on reflection us breaking up was the best thing to happen for both of us. She now has Kev, who I always liked, and their wee family now and I couldn't honestly be happier for them. The due date of their new baby is 7th March - the same day I go to Newcastle so Kev and I have tentatively agreed to go out for a drink to wet  the baby's head and hopefully celebrate my going on the active transplant list when I get back.

Now when I was admitted to the Beatson a couple of years ago and was down to 41kg, Sam came to visit because I had kind of scared her in an e-mail I sent about just how bad a state I was in. She and my pal Gerry who had brought her just sat and talked for hours - they didn't leave till half eleven in fact but the nurses weren't bothered about them staying as I really wasn't well and it honestly could have been the last time they saw me. We talked about how jealous we were of certain aspects of each others lives which was curiously refreshing.

Thankfully, I'm in a much better way now and there's hope on the horizon. I just wanted her to know how much her help has done for me and that I hope I never have to return the favour.

I'm high but I'm grounded.

Just a quick wee post to say that my Cyclosporin level in my blood is 281 (we were aiming for the range 250 - 300) so we now have the dose pretty much spot on so I can stay on it for the next 5 weeks or so. I'm even getting my blood checked at the local GP's rather than having to go across Glasgow to the Beatson just to give blood.

In other news even though I've been on this high dose of Cyclosporin for a month now there has been absolutely no problem with kidney function which is the worry for the test down in Newcastle, so it's all looking OK at the moment.

Hoping to go out for a few drinks on Friday night to see a few people I've not seen in far, far too long.

Anything's better than posh isolation

As expected this week I started taking Cyclosporin again, the anti-rejection drug that I would need to take if I were to have a Lung Transplant. The plan, as I have mentioned before, is for me to tinker with the dose over the next few weeks till we can all be satisfied that the dose I'm taking equates to a therapeutic dose in my blood. This means that for the next week or so I'll be going twice weekly to get blood taken to check for the level of the drug in my blood. We're looking for somewhere in the region of 250-300 mg/ml.

When that dose is stabilised I'll probably be on Cyclosporin for a good 6 weeks before going to Newcastle to get the GFR test repeated to see if I can, in fact, tolerate the drug regime I would be on post transplant.

Now the extensive checks conducted on my kidneys by the renal and urology consultants when not on Cyclosporin suggest that there is nothing structurally or functionally wrong with my kidneys, but that then has me wondering why the initial GFR test showed a problem with my kidneys in the first place. Surely the absence of Cyclosporin is the only variable between then and the recent barrage of tests so if I go back on it then it stands to reason that the GFR will give me the same response as it did last time. Well maybe, but remember it wasn't just the Cyclosporin that was removed from my repeat prescription these past 9 months or so - there were also had a couple of other drugs (an antibiotic and an anti-hypertensive) that have the side effect of damaging the kidneys changed for more kidney friendly versions. So maybe it was them that caused the dodgy result in the GFR test and it had nothing to do with Cyclosporin at all.

All these things will be answered when I go down to Newcastle again in early March. It really can't come quick enough. I've got bored of wondering what path my life is going to take and now just want answers, even if it's not the one I hoped for. At least then I can come to terms with it and get on with whatever life I can get on with having.

There's a song playing on the radio

Got nothing medical to tell you but thought I'd wish everybody a Happy New Year. Mine was very quiet indeed, just staying at home and in bed watching rubbish telly. Can't say I was that bothered as I've never really got into New Year, it's always been Christmas that's been the more important time for me and Christmas with the family was absolutely brilliant.

In fact preceding that we had my birthday on the 23rd and it was also excellent. All my friends and I had a bit of a tradition that my birthday was the big night out of the year because it was always the day where you could guarantee we'd all be home from wherever it was we were all living at the time. It used to always be going out for a curry but my situation meant that what we did this year was to have a take away curry at my house. It was an absolutely brilliant night, with me almost certainly telling stories that you shouldn't air in front of your mother, and with everybody else in absolutely tremendous form so even though we didn't go out it was still fantastic.

The usual promises were made of coming to visit more often but I know that real life will somehow contrive to get in the way of that and I'll just have to take my visits where I can get them.

The people I didn't see on my birthday I mostly caught up with the weekend before at my mate Gerry's wee boy's Christening so it's been a great period for just hearing how things have been going outside in the real world.

Little things like that trip out to the Christening, or the guys coming round on my birthday, can seriously perk me up for days afterwards. It's not that I'm sitting moping about at home all the time, but for some reason a visit from a good friend just seems to flick a switch and I'm genuinely happy for the days following.

So 2012, you've got a lot to live up to. March, I'm looking at you specifically.

Trying to catch the deluge in a paper cup

So the many, many appointments of the past few weeks have finally come to an end and there is a plan in place.

On Tuesday I went to see the Urologist who would tell me conclusively whether there was anything wrong with my kidneys. Previous to that I had an ultrasound, a renogram and a contrast CT scan performed so he had the full range of scans at his fingertips as well as the blood results to gauge whether my kidneys were functioning correctly. It turns out that they are indeed working just fine and so they discharged me back to the care of my primary carers in Haematology / Oncology at the Beatson saying that they can find no reason not to put me forward for lung transplantation.

As a slight aside the person who put the venflon in for the contrast material to be injected into my arm pre CT scan was nothing shy of a butcher. She couldn't find a vein on my right hand so then proceeded to basically root around my left wrist until she found one, and almost certainly hit some cartilage as it's still sore over a week later and the ridiculously large bruise she left is only starting to diminish now. She left me looking like a careless junkie. She was a senior nurse as well so I had expected it to be easy as all other nurses and doctors previously have commented on how good a state my veins are in considering how much they've been abused over the years. Turns out seniority doesn't mean you're good at the practical stuff. I've found over the years that the oncology nurses are the best at taking care to preserve your veins as they know they'll need them later - others aren't so careful.

So, getting back to the point in hand, I have been given the all clear by the Renal and Urology docs to proceed with whatever course of action the transplant team want me to take. That is to say I've to take the full therapeutic dose of Cyclosporin that I would need to take post transplant and then go down to Newcastle to see if it does affect my kidney function with a repeat of the GFR (Glomerular Filtration Rate) test that highlighted a possible problem with my kidneys the last time I was down. The Glomerulus being the first structure for filtration of blood into urine found in kidney cells.

So I phoned the transplant co-ordinator and they are thrilled I've got this cleared up and I've got an appointment to go back down there on the 7th March. This ties in quite well with my other appointments. I have an appointment with the team at the Beatson on January the 9th where we can start the cyclosporin and tinker with the dose over the next few weeks until we can get the level of cyclosporin in my blood to maintain a therapeutic level of somewhere in the region of 250-300 mg/ml. To manage that I'll probably need to go twice weekly to get blood levels taken for a few weeks, especially because my weight is so different from when I was last on it. Trying to get the dosage right is paramount. Then I'll have a full month on that therapeutic dose before my daytrip to Newcastle and the repeat GFR test.

I'd be a liar if I said I wasn't relieved to know that there's nothing physiologically wrong with my kidneys under normal conditions but I'd also be lying if I didn't admit that I'm scared that adding cyclosporin to the mix  will result in finding my kidneys can't tolerate the demands put on them by the anti-rejection drugs.

Still time is passing quickly and March will be round in no time. I have a good few weeks now to enjoy the holidays without any appointments to go to after the previous deluge.

A winter's day, in a deep and dark December

The next few weeks are about as busy as I've been in two and a half years and it's all down to the wonderful work of the Renal doctors in really pushing for me to be seen quickly by the Urology team. After having sorted out the mishap in planning that would have me in two separate clinics within the same hospital at exactly the same time, I've rearranged one that allows me to do the two in one trip.

So firstly I have the dreaded pulmonary function tests and then the Urology clinic. I really would have liked to be able to have rearranged the Urology clinic because next Thursday I have a kidney contrast CT scan that would have extra information for the Urologist to have at hand but unfortunately this wasn't possible. They will at least have the previous ultrasound and renogram of the kidneys to work from so it will still be a worthwhile trip but it would have been nice for them to have the whole story. On that point I received the contrast material (mildly radioactive isotope) through the post, which I found profoundly odd.

That weekend I have a family Christening to go to and then I have a trip to the Respiratory consultant to see if his feeling that my respiratory function will have improved from my weight gain has borne out. I will also see if he has found the muscle stimulating pads that he thought I could use to try and turn the weight I have put on in fat form into muscle because I can't do it through conventional exercise. The pain I have been experiencing in my muscles apparently isn't necessarily down to muscle atrophy but is a side effect of the Statin drug I have been put on to bring down my cholesterol (which is too high because I feed myself with liquid fat). That actually ties in quite well as the timing of the muscle pain fits with my starting the Statins.

The following weekend I have another Christening to go to. I really, desperately hope I can manage to go to the non-hospital stuff because I really need a trip out the house that doesn't involve blood removal.

So, the last six weeks have involved more progress than the previous six months, a fact I recanted to the lung transplant co-ordinator when she called for an update. They really are keen for me to progress and I have to say the phone call made me feel exceptionally upbeat about my prospects.

This is my only escape from it all

I watched Children In Need on friday night. I don't normally do this because the enforced jollity of the 'fun' bits I've always found incredibly cringeworthy and the serious parts I feel are lost on me because I have a firm belief in charity being a very personal thing and I'm very happy with what I give to the charities I choose to donate to. That changed on friday when they played a film about a little 7 year old boy with leukaemia who needed a bone marrow transplant to survive. They found a donor on the overseas list but sadly the donor took ill a few days before the transplant was planned and it had to be cancelled. This brought back memories of my cousin who was in a similar position, with a donor match who fell ill and couldn't donate. In my cousin's case he had really aggressive treatment and recovered but in the case of the poor wee boy all attempts along the same line failed and he died aged nine. I was watching in floods of tears, not just because of the sadness of the story itself but because it made me realise again just how much of a lucky, lucky bastard I had been. From diagnosis to a successful bone marrow transplant for me was the grand total of ten weeks. Ten weeks from diagnosis to cure - that's incredible.

I was so affected by this film about this I had serious thoughts about emptying my bank account and sending it all to Children in Need but more sensible heads prevailed and I made a decent donation without bankrupting myself.

Today I went to the renal clinic hoping to find out whether the urology department had responded to the letter that had been sent requesting an urgent consultation about the small blockage in one of my kidneys and how, or even whether, it needed dealt with. Having had no response to the written word the renal consultant printed out my information and just walked through to the urology consultant and got him to deal with it, explaining that I was a rush case because I am open to opportunistic infection and want to get back down to Newcastle to see the transplant team as soon as possible. An incredibly simple solution that not enough doctors would have bothered going out of their way to do. So the urologist has organised a contrast CT scan of the kidney to see very precisely what needs done.

So, again it's slow, but steady progress. Pretty pleased with it though.