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.

I get tired, and upset, and I'm trying to care a little less

According to a character in the film Contagion 'Blogging isn't writing, it's just graffiti with punctuation.' This line clearly borrows from Truman Capote's critique of the book On the Road by Jack Kerouac, which he characterised as 'That's not writing at all, but typing'.

I've thought a lot about this because quite a few people have told me I should try writing something seriously and I just feel that while I can stumble onto some good points on occasion and make them quite well, I could never tie them together into something as coherent as a book. Not right now anyway while my brain remains as fuzzy as it does.

I also mention Contagion because it's about the spread of a global pandemic and just how easy it could spread in the modern world. It's made me realise just how close I was to becoming a mere statistic when I got swine flu. I was still feeling the after effects of fungal pneumonia when I caught swine flu so my immune system was already pretty ragged. Added to that I had viral meningitis at the same time and it is incredible that I made it through all that.

I've always been very keen to avoid addressing it when people define me as being strong because I've seen some of the strongest people I've ever met succumb to Cancer and some of those who took it less seriously get through it. I've never really believed it's about strength, but I'm coming around to the idea that there might well be something in it. My best friend Dave says I can't be killed by normal means. A lot of my visitors recently have commented on how strong I must be to cope with the slow progress towards the possibility of a lung transplant and I can't tell them they're wrong. I have been strong, although I would say that with the caveat that I can be really lazy at times. I worry I use the fact that I find things difficult for not even trying so I'm going to try and remedy that.

Immortality is ubiquity in time

So what have I to tell you?

Again I have had lots and lots of visitors, and while it is always a pleasure (especially those who have come from a different country), it is mentally exhausting. So now I've got a few days where I can rest up and just feel a little better within myself.

I mentioned the last time I posted that I was going to see the respiratory consultant but that it was merely to keep him abreast of how things were proceeding. It didn't turn out that way at all. I am now just shy of 63kg (9 st 12 lb in old money) so all the docs are happy with my weight, they just want it to be more muscle than fat. That's quite a difficult thing to achieve when you can't exercise because your lungs won't allow you to, so he's looking into another option. You know the things they advertise on telly that can give you a six pack stomach through electrical stimulation of muscles? Well they used similar equipment on a study a few years ago and it was quite successful so they're looking for the gear that will allow me a whole body version of it. This is also because I am now suffering from muscle atrophy because they're barely getting used. With the muscles wasting away I'm getting a dull pain in them too so anything that would improve that situation would be fantastic.

He also wants me to do another set of the dreaded pulmonary function tests. When I was at my lowest weight they couldn't get a reading from their machines because my lung function was so low. Apparently though not all of that is down to damage to the lungs but some of it because I was so underweight. So theoretically they'll now be able to gauge much more accurately the level of damage done to my lungs. Yay.

I had them done when I was in Newcastle so I know I'll be able to adequately provide them with all the info they're looking for but I do hate them so. Having people shout at you to breathe out just that little bit more when you already feel you're about to flake out is just grim.

Oh aye and today would have been my dad's 67th birthday. Still miss him every single day.

You're so blind you flounder drowning

I've had a brilliant last few weeks. I got out to my niece's christening - I missed the last one because I was too ill to go and I've felt bad about it ever since. Seeing so many family and friends in the one place is always great. So many of my cousins have children of their own now as well so it was all very civilised but it was so good to see them all. I didn't even feel terribly tired after it.

On top of that my best friend has been home from Sydney and it's given us a chance to really catch up. It's not that easy to communicate all the aspects of my treatment through the medium of Skype so sitting him down and explaining it all was very much needed. It was also just nice to sit and talk about all the usual nonsense we do. I miss the fecker greatly, as I've mentioned here before.

In between times I've kept myself busy by building a rather large lego set (~3100 pieces). It is the Super Star Destroyer from the Star Wars films. I already have the normal Star Destroyer (which somewhat ironically has more pieces) so this was the next logical step. It cost a lot but I don't have anything else to spend my money on so I thought 'why not'?

Here's the various stages of development.

Stages 1 & 2

Stages 3 & 4

Stages 5 - 7 Complete

It's 1.25 metres long and took me a week to build. The other Star Destroyer took far less time but this one was much more fiddly and I couldn't get comfortable when building it so did it in little stints. Being honest my concentration wasn't up to much either so doing it in little sections was the best way to go. I know it's really geeky but it is genuinely awesome.

I'm also in a really good mood because I'm getting some great visitors this week. Today my mate Olly was going to come through to see me before he moves to Amsterdam on Friday but he's had to reschedule to Thursday due to taking an unfortunate tumble in the park yesterday. I've also got my friend from Uni Yvonne and her wee family coming at the weekend, which I can't wait for.

In between times I've got a trip to see the Respiratory consultant, but that should just be a quick appointment to keep him abreast of progress towards transplant.

You've gotta see her

Today there was a happy wee rite of passage in the Kilday household. My wee niece Chloe came upstairs to see me and she helped me with my medication. She's only 15 months old but she handed me bottles and blister strips for me to count out. All the nephews and niece before her have done exactly this when they've been as young.

I sent the eldest niece Maria a message on her Blackberry to let her know that the wee yin had taken over what she started about a decade ago. When I was recovering after my bone marrow transplant Maria lived only a hundred metres or so away and so would spend lots of time with me, helping me gain strength and just keep me company. She took it upon herself as a two year old to start counting out my tablets for me. She never, ever looked upon them as anything other than helping her uncle Paul - these were never looked upon like sweeties, which considering the steroids I was taking were bright red, sugar coated pills, was hugely impressive. Somehow she just knew the difference. I sometimes wonder if it was reckless of me to allow her access to this stuff but it never became an issue. It never did with the boys (my two nephews Daniel and Ewan) either, with the most amusement coming from dissolving co-codamol in water for me. They have all referred to them as plunk-fizzes.

Maria's now at high school and she never fails to amuse me and thrill me with how she carries herself. She's the kindest, brightest wee soul you could care to meet. If the others come close to as impressive as my wee pal is then we can all be very proud of them.

Into your arms I go

The lyrics I choose for these blog titles have usually got a link to the content. At least that's what I try to do. Normally the link could probably be understood by about three people but I'm explaining this one. My friend Lynn and I have a real love for the band the Lemonheads and Into Your Arms is each of ours favourite song. We have both been at concerts where when the song is being played we've phoned the other just for them to hear it too. It's a tiny little something that's bound us quite tightly over the years.

Right back when I started this blog my friend Claire (affectionately known as Bundo) wrote a little piece about what it's like to be the friend of someone going through all the stuff I have. Well Lynn has come up trumps with a short piece of writing that pretty much encapsulates how most of my friends feel. It is intended for her own blog for her business but I thought it could do with an airing here

"I want to share a story about a friend of mine today. I’ve actually been really struggling with this as his story makes me feel incredibly guilty, I don’t see him often enough and when I do see him, I don’t want to share my stuff because he’s struggling just to breathe.

Everytime I go to see him, I think that I’ll give him hypnosis and help him out, and in the end I just sit and chat, feel helpless, and go away thinking there’s nothing I can do. Then I won’t see him for another few months because I’ll allow myself to get distracted by my life. A life I’m living fully thanks to my health.

My Friend, Paul, is waiting for a lung transplant. He’s 33 and spends most of his time in bed, connected to an oxygen concentrator. This visit, he explained that he’s not even on the active transplant list yet – he’s not even at the stage where he could get that call at any minute. Right now he’s just waiting to be called for the tests to see if he can be placed on that list. It make me really angry to think that this could go on for him for months yet. He’s already been there for over a year, and no end in sight. Yet each time I go see him, he’s positive and talks about it so matter of factly.

Truth is, I talk about trying to live with integrity and passion, yet with Paul, I don’t know how to. The thing that I noticed recently was that I was bothered that two of my friends got ill while we were on holiday, there was a part of me that was annoyed because I thought we’re in Marrakech for god’s sake – make the most of being here…it's just a silly little stomach bug! Not entirely the best and most compassionate way for a pharmacist to be thinking!

The thing that bothers me most is that I’ve been so sure that Paul will get the call any day now, so hearing that he’s not at that stage makes me want to cry. But I also feel like I have no right to feel like that. He’s so strong, that I feel awkward and shallow in his company now. I feel guilty for having full health, which I know is silly too – surely I owe it to him to be living life to the full? "

For what it's worth I think she beats herself up a bit much about how often she visits as she calls often enough and we can just chat away for hours too. Her final point is always something that bothers me though. She doesn't owe it to me to be living life to the full; she only owes that to herself. I often have people telling me they don't want to tell me the troubles from their lives because they seem trivial next to mine. I used to get really annoyed by that - I worried they were ignoring important things just because they weren't as dramatic as Cancer. If something important is happening in your life you need to address it and it's ok to tell me all about it, not least because knowing that life is just carrying on is curiously therapeutic, but also because I'm a right nosey bastard.

I like it that way; but then again maybe.

I was at the renal consultants yesterday to discuss the results of my renogram, allied with the ultrasound of my kidneys and blood tests of kidney function.

The upshot of all this information is that I have a minor obstruction in one of my kidneys which is causing it to drain less effectively than normal. When I say less than normal, it is only very marginally so, but what it looks like it happening is that it is only intermittently causing a problem which would perfectly explain why there are peaks and troughs in the creatinine level in my blood.

This is potentially good news as it might mean that it's not any drug issue that is causing the kidney function to be an issue at all. That said, we are still pursuing with the program of adjusting my repeat prescription drugs for more kidney friendly versions and staying off cyclosporin for a few months.

So where to go from here then? Well the idea is that I will see a urologist (yet another consultant to add to my list) who will decide if this obstruction actually needs addressed in any way and from there that information will be passed to the lung transplant team to do with what they will. The great hope is that the urologist will pass me off as ok and the transplant team accept that I am safe for transplantation.

The wait to see a urologist will of course push the program further back but the longer I have without taking cyclosporin the happier I actually am.

In other news I had to send my sister clothes shopping for me today as my clothes are getting a little bit tight. This has prompted me into further spacing of my night time feeds as I am maintaining a weight of about 60kg quite well.

The future teaches you to be alone

I have a hellish sore throat and a bit of a chest infection. Nothing that will require hospitalisation, just rest and lots of soup.

I have taken the decision to reduce the number of feeds that I put on overnight through the PEG tube in my stomach. I'm well past the target weight of 54kg and putting what is essentially just a fatty liquid into my body is doing bad things to my cholesterol level. I am on a statin drug to help bring that back down to a normal level but it's always going to be a battle to keep it under control if I'm pumping liquid fat in every night. So when I reached 60kg I decided that it was probably ok to alternate the nights where I put a bottle of feed on.

My dietician phoned the other day just because she is now on a different day from my clinic days to make sure I was doing ok and completely agreed with that plan. Claire has been with me all the way from the bone marrow transplant and has been a really good friend as well as looking after my health. Her phone call was well timed too as it gave me the chance to ask her what would happen with my PEG tube as it's nearly two years since it was put in and that's how long they're recommended for. She's going to check but as long as the tube is still working perfectly, which it is, then there's really no need to replace it. This is the answer I hoped for as I can't be bothered with another procedure, even though it would be much less of an intrusive procedure than the original placing of the tube. I can still do without it.

I had a renogram last week and it confirmed that there is a little bit of an issue with my right kidney. It is a little slower at draining than the left but it is such a small difference that it is regarded as pretty negligible, and certainly not a reason to preclude me from a transplant. It also matches up with a slightly darker area that was seen on the ultrasound when they performed that. I'm going to see the renal consultant again next week - I've got the blood tests done that he wished so he can now give me a better idea of where we are. He explained to me last time that my kidney function appears to be going through cycles where the creatinine levels go up and down. He suspects that when I was down in Newcastle and had the Glomerular Filtration rate test done it just so happened that I was at the peak of one of these cycles, so it isn't indicative of my overall renal health. Here's hoping the next time I go down I'm at a trough in the cycle.

I woke up today with this feeling; better things are coming my way

When people go into medicine they often start out with an idealised view that they're doing it because they want to help people. Somewhere in their training a lot of that is beaten out of them simply through seeing such horrific things, often on an daily, if not hourly, basis. They start to view patients as bags of symptoms because it's quite simply the best way for their mental health to cope with the enormity of it all.

As they proceed up the pecking order something odd happens and by the time they reach consultant level they start treating you first as a human being. That's my experience at least.

What comes with that experience though is a firmness in your belief that you are in the right and this is why sometimes consultants can come across as arrogant. Getting people who are so forthright in their opinions to agree on a course of action therefore isn't always easy. I now have consultants for

• Haematology/Oncology
• Respiratory
• Renal
• Oral/Maxillofacial
• Lung Transplant

My primary carers are the haematology team at the Beatson Oncology Centre, but ultimately heading towards transplant the consultants with the largest sway are the transplant team. Getting these two to agree on what measures to take going forward has been a slow process and it is only with the recent addition of the renal team that has really allowed an actual concrete plan to be formulated. The renal consultant has put forward a convincing case that I should be able to tolerate the post transplant drug regime and that has led to a decision.

So we now have a plan and that is to take me off Cyclosporin, the immunosuppressant drug that has been doing most of the damage to my kidneys, for a few months to give the kidneys a bit of a rest. After this we will then try a month of being on the full dose that would be given post transplant to see if my kidneys really can cope with what they would have to if transplant were to happen.

What this means for me is that I will now be pushing back my return trip to Newcastle by several months but I don't mind that at all. I am perfectly comfortable and having waited this long for progression I'm just happy that I know what we're going to do.

The other really sensible thing the renal consultant did was to go through my entire repeat prescription list (all 22 items) and look for alternatives that are kinder to the kidneys. There's been a few changes already on that front - doctors at any level tend to prescribe what they're most familiar with rather than the best drug for a particular patient. I understand this completely - few drugs have lots of information on what their long term use could lead to after all and doctors tend to prescribe the most common drug first and only when it causes a problem do they change it. I don't expect doctors to be clairvoyants.

In other news one of the great loves of my life (and now one of my closest friends) is back in the country after a year away living in her native America. I can't tell you how relieved I am that I am in relatively good health and nothing bad happened to me while she was away, especially as one of her best friends died while she was over there. I've been worried the whole time she was away that the worst might happen with me too. I can't wait to see her again to hug the life out of her.

I lost my faith in the summertime cos it don't stop raining

One of the more surprising aspects of my health that the transplant team demanded be in order was that of my dental health. I suppose if you stop and think about it then the mouth is a fairly primary source for infection to take hold in the body so once I had considered it it made sense and I even remember being told it pre bone marrow transplant so I perhaps should have remembered but I've got a lot to carry about in my mind so there are bits I forget. Not much granted but little bits.

To this end I've had to have two teeth out, one wisdom tooth that had impacted like two others previous, and another tooth out not because of any decay but the x-ray showed that it would likely cause trouble in the future not only in itself but for the surrounding teeth, so after a bit of an endurance test out it came. I've also had a few filling repairs done so I'm now in perfect dental health.

On the advice of the dental hygienist I got a posh sonicare electric toothbrush that has been a complete revelation. I've become somewhat evangelical about it. She also introduced me to the marvel that is the interdental toothbrush - these curious little things look just like shrunken test tube cleaners and they get right in the gaps between teeth. It's a really odd feeling but they're also brilliant. All of this allied with assorted mouthwashes and my mouth is almost always perfectly fresh feeling. It keeps the docs happy too.

As well as this going on my assorted docs are going through my entire prescription list looking for alternatives to the current medications I take that are a little less damaging to the kidneys. There's quite a few that can be swapped apparently so hopefully my next set of blood tests show a bit of an improvement.

I've had a good few visitors in recently and they all have the same opening gambit - sorry I've not been sooner. In almost every case I don't care how long it's been as I know how busy people's lives are but with one friend it had been nearly two years since he had been to visit. I've got friends that live in other countries that visit more regularly than that so I've no idea why it took him so long but it did. Still as soon as he was here it was like nothing had changed and that's the point I really want to make. It doesn't matter at all how long it's been since you've seen your best friends - as soon as you do see them you resort to type. If only a few others trusted that I'm not angry that they've not visited and just made the effort they'd feel better as well. For what it's worth as well as opening with the same line they all leave with the same line, that it'll be less of a gap next time. We each know it's a lie but it's a harmless one.

Dream trippin'

I know I've resorted to posting an XKCD comic strip before but sometimes they summarise things much better than I could ever manage. If the pic messes up your screen just click the link and then scratch your head at the insanity of it all

http://xkcd.com/938/

Sometimes Jim there's a Sistine Chapel splattered on tenement stone

You may recall that the upshot of my trip to be assessed in Newcastle was that everything was ok to go ahead to be placed on the active transplant list apart from an anomaly with my kidneys. There has been some damage done to my kidneys by years on cyclosporin (to suppress my immune system).

So today I went to see a renal specialist, along with my sister who happens to be a renal nurse and also used to work with the consultant who saw me, where I got an ultrasound scan of my kidneys done and had a good long chat with the doctor about my situation.

The news is that the scan itself showed very little wrong structurally with the kidneys, although a more in depth report will follow, but from the first analysis of the scan there isn't anything like a blockage in my plumbing to account for the slight elevation in my kidney activity. This means that we can pretty firmly say that it is indeed the medications I have been on that have caused the damage there has been. This, you'll recall, is an issue because I would have to be put on large doses of the same drug post lung transplant and there's no point fixing my lungs only for my kidneys to fail.

Today's discussion though was very fruitful as we went through my entire drug regime looking for all the drugs that can cause kidney damage with the view of replacing the ones I'm currently on with some that are a little kinder to the kidneys. We found a few of those and this led to the greatest revelation of all from the consultant. According to him my kidney function shouldn't be a barrier to transplant at all, even at current levels. He has observed a trend where there are peaks and troughs in my creatinine levels (which roughly correspond to kidney function) and it just so happened that when I was tested in Newcastle it was at the peak of that cycle.

Of course the opinion of one consultant isn't necessarily going to completely change the opinion of the transplant co-ordinators but today's consultant said he was going to write to the transplant consultant (as well as all my many other consultants) to put the case forward strongly that I will indeed most likely be able to tolerate the post transplant drug regime.

Then came a discussion about whether the post transplant drug regime could in itself be changed. There are other drugs available to suppress the immune system, but cyclosporin (sometimes in tandem with another type) is the tried and tested route so it may be hard to get the transplant team to accede to such a plan. Still it's all food for thought for me and for the docs.

It might just be a baby step but I'll take any step forward as a positive right now.

So if you're lonely you'll know I'm here waiting for you

In the Great Gatsby F. Scott Fitzgerald noted that 'life is much more successfully looked at from a single window, after all.'

Now while the bold Mr Fitzgerald was obviously being metaphorical I can take that little phrase as literally as just about anyone. I spend almost all my time in the one room with one window to look out at the world. So what I take from this little phrase is that I, in my isolation, have a more focussed viewpoint on my life. I think that's probably true. I have more command of how I feel about things (even through the occasional medicinal fog) than I've ever had in my life.

My situation is one that you wouldn't wish on your worst enemy but I have embraced it as my own and so have a clarity of thought regarding what I can and can't do with my life, for the moment at least.

With the upcoming tests to see if my kidneys can handle another tough regime of immunosuppression I'll have to see if this clarity can continue.

Obviously I'm hoping that the transplant team conclude that they can let me go forward to the active transplant list but I have to consider that the damage done to my kidneys is too great and that there's no point performing a lung transplant only to leave me needing dialysis for the rest of my life. That would be no improvement from now. When thinking about this I think about it from the doctor's point of view and the Hippocratic oath premise that a doctor should first do no harm. The transplant team described that course of action as reckless and I agree with them completely.

So I am preparing myself for what will happen if I can't proceed to transplant. There are two options:

1. Remain on low level immunosuppressants to prevent Graft vs Host Disease attacking my lungs again. This would leave me open to opportunistic infections but I've largely remained free from hospital on that regime for 18 months now (not including the trip to Newcastle). I would have some sort of life similar to that which I'm leading now.
2. Come off all the drugs that suppress my immune system and see if my body is still being attacked by itself in the form of Graft vs Host Disease. If it isn't I'll be safer as I will have a greater resistance to infection but it is a big risk.

With either of these choices I'll have to come to terms more with the life that I have and perhaps find ways to spend more time away from that solitary window. I've no shortage of helpers who will do everything they can to make the most of the situation. That's all I think anyone can ask of their life.

Come play my game I'll test ya

I knew there was something I forgot to share with you. Counter-intuitive as it may seem the transplant team at Newcastle decided to decrease the amount of oxygen I'm on. Now that may sound ridiculous for someone who can barely breathe at all without extra oxygen. It would be straightforward to think that increasing my oxygen flow would improve my oxygen saturation in my blood, and it does.

What comes as quite a shock though is that oxygen can actually poison you.

The level of oxygen being forced into my lungs through my concentrator wasn't allowing what we'll call exhaust gases to get out, leading to a build up of CO2 in my lungs and arteries.

I get checked all the time to see what my oxygen saturations are and on a good day with my oxygen on they can reach the heady heights of 95% which is damn close to normal. Remove the oxygen and within a single minute they'll plummet to about 84% without even moving. Even those of you not terribly good at maths can spot that's not good.

What very rarely get checked are all your blood gases and I'm incredibly thankful for it because it requires arterial blood to be taken. Getting blood out of veins barely even hurts and that's only because of the tiny little pin prick from the needle itself. Getting blood out of arteries is totally different because arteries are positively brimming with nerve endings, thus making plunging a piece of surgical steel through them a rather painful process. I have one reliable artery on my left wrist that I can point doctors directly at so they're not rooting around, which is an unbelievably painful but sometimes difficult to avoid effect of this procedure. Before I found this particular old faithful artery of mine I had a few rather botched attempts at finding the equivalent artery on my right wrist which I'll just say did not go well.

The exertion tests I talked about in my last post I performed under the new lower level of oxygen and I have to admit I surprised myself. Even a few days of the amended therapy might have helped my lung function. I've to get my blood gases taken again in a week or so and hopefully that'll confirm that there's less CO2 hanging around making a nuisance of itself.

My castles stand upon pillars of salt and pillars of sand

I've just got back from my four day stint at the transplant clinic at the Freeman Hospital in Newcastle. To say I was put through my paces is to underestimate somewhat. I had test after test, some of which were just blood tests so involved no effort at all from me except giving up my blood, but others required pushing me as hard as they possibly could.

Day one (as I feel inclined to say in a Geordie accent) I had a few chest X-Rays and the barrage of blood tests as well as a full medical work over to make sure there was nothing untoward other than the obvious and all the paperwork was done to admit me as a patient. In fact it was done in triplicate as I had to answer the exact same questions to three separate people.

Day Two was the start of more intensive tests, the first of which was the test (GPR test) to see whether my kidneys were working well, which involved injecting a radioisotope into one arm and then taking blood at periodic intervals to see how much of the radioisotope marker is still present. As soon as that was out the way I had to do the one thing I was dreading the most, the exertion test. I was taken to a corridor in the hospital which is of a specific length and has 10 metre intervals marked on brass plates on the skirting boards. They measure how far you can walk at one minute intervals up to a total of six minutes. I managed along the corridor and back before needing to take a break before trying a little bit more. They were very pleased with how I managed. This test is to ensure that you are strong enough to make it through the surgery if you are ever to be put forward for transplant. After a little recovery time I went for an ECG and a Cardiac echo to see if my heart is functioning, which I can tell you is fine, although a few of my medicines and my lung condition mean I have a very rapid heart beat.

I also met the Social Worker in the department that day and she was pleased to hear I had a decent handle on the benefits I'm entitled to but also provided me with literature that will allow me to apply for to help pay for the trips I will need to make down to Newcastle.

Day Three held my least favourite of all the tests I was going for - the dreaded pulmonary function tests, which calculate your lung capacity amongst other things. The last time I tried these tests I was so weak I couldn't even get the machines to register. This time it wasn't bad at all and I managed to do all the tests they required. Don't get me wrong the results are still on the shocking side but at least they could get a result this time. After this I got to spend a fair amount of time in the ultrasound room where all my internal organs were checked out. Following that I got injected with another radioisotope and then had a gamma ray scan of my lungs done. I'm beginning to wonder with all these radioactive materials and gamma rays just when my superhero powers are going to kick in. By the time I got back to the ward the transplant team were doing rounds and the Prof popped in to see me just to tell me they were collating everything and they would have their meeting at lunchtime the next day and let me know where we go from here straight after.

So Day Four was just a waiting game for this meeting. I thought I would be anxious but I sat there just passing the time until they arrived. The news was very much what they call a mixed bag. On almost all fronts I was a perfect candidate for transplant but there was an issue with my kidneys function and an issue with my cholesterol level. The cholesterol issue is easily remedied and it is only high because of the artificially high fat content of my diet over the last year or two when trying to put weight on. Now I have the right body mass I can just maintain it and take drugs to bring my level down. The kidney function is an another issue altogether. My kidney function is a problem because the immunosuppressant I take, Cyclosporin, has the side effect of damaging the kidneys. In the last few months I've slowly been lowering my dose of it in the hope of coming off it to see if my immune system is still attacking me but the plan now goes in the complete opposite direction. The doctors are advising that I start taking the full dose I would receive if I were to get a lung transplant to see if my kindeys can cope.

So the short version of things is that I'd be fine to get through the transplant operation but I might die of organ failure because my kidneys fail. As the idiom goes 'the surgery was a success but the patient died.' It would be reckless to proceed towards surgery at this point, not knowing how I would react immediately post transplant.

So what does this mean? It means that I have a few months ahead of blood tests to check kidney function and then I will go back down to Newcastle in three months to do the same GPR test to see how well my kidneys can remove the radioisotope.

I am now essentially on a provisional list as otherwise I am ready and just need this one big thing sorted.

On the drive home I started thinking about it in terms of cars. You can either look at it as an MOT where I need one major and one minor thing done to make me roadworthy. The other way I thought of looking at it is like a driving test where I had one major mistake and one minor - I'd have got away with just the minor but not the major one. Now I need to eradicate that major one and get this show on the road.

It was a real shock when the consultant Prof. told me but the knowledge that I only have three months to wait and only need to go down for a day and not have to go through the whole barrage of tests again was quite reassuring. He was very considerate in telling me everything whilst still making the facts clear which is a lot harder than you might think.

I also heard afterwards that none of the other patients who had come for assessment have been put forward without also having to do something particular to their own case to be put forward to the active transplant list. This made me feel better, even though I felt for those people, because it made the whole process feel like just a step on a road rather than the be all and end all. I'm still a lot closer to the active transplant list than I was on Monday and I need to keep that in mind.

There's mischief and malarkies....

A few of my very favourite things came together this week.

One of the radio shows I listen to is called the Infinite Monkey Cage. You might remember I went to see a related live show called the Uncaged Monkeys a few months ago. It's about all sorts of aspects of science and is just brilliantly clever and amusing.

You can find it on the Radio 4 page on the BBC (here) or download the podcast from itunes. I really can't recommend it enough.

One of the guests this week was the writer Alan Moore who wrote two of my favourite comic books ever in V for Vendetta and the Watchmen. Those of you who actually know me will know that I have a tattoo round my wrist that says 'quis custodiet ipsos custodes?' which roughly translates as who watches the Watchmen (or who will guard the guards)?

The answer to that question of course is that it is we, the civilian population, who are meant to keep the police honest. I got that tattoo done when I lived in Belfast which is a place where nobody trusts the police, and for very understandable reasons. It was to remind me of the place.

After I left Belfast and moved to Liverpool to do teacher training though, it began to mean something more to me. It was more about trusting any person with a position of authority. I was now the figure of authority and had to take that very seriously. As it's on my wrist sometimes a pupil would see it and ask what it means and I would explain it to them and tell them that it also means that they are the ones who need to keep me honest. I don't have all the answers and will on occasion get something wrong and it's absolutely necessary for them to tell me when that happens.

Anyway, listen to the show but more importantly go and buy the comic books - the films aren't awful but they haven't done the source material any favours at all.

Baby got back

I knew there was something I forgot to mention from my trip to the hospital on monday. As part of the endless hoop jumping that I have to perform before being allowed to the assessment down in Newcastle I need to be screened for MRSA. This involved swabs being taken and cultures being grown to see if there is any indication of MRSA.

The only reason I mention this is because as well as the standard nose, mouth and throat swabs they require a perineal (If you don't know where the perenieum is go have a wee search) one. Instantly this set my mind wondering whether the nurse taking the swab would approach from the front or behind for this one. I knew either way I'd be rather exposed in front of a nurse for about the thousandth time. As it turns out she simply got me to pull down my breeks and kecks and lie away from her. She told me she'd have to just move a cheek to get to the right area - I burst out laughing, not because I was nervous or anything, but because it proves that for the first time since I was on steroids I actually have an arse to speak of. Normally I'm so thin that my back just kind of turns into legs with no discernible arse area inbetween. This really is proof that I've put on a good bit of weight. Mind you it's amazing how many people stopped me on monday and told me I was looking great so I'm obviously carrying the weight well.

The doctors at the Beatson got in touch yesterday to say my kidney function tests were showing rather unfavourable results so I've to go a few days without taking my immunosuppression drug Cyclosporin as it's the most likely candidate and then resume taking it at a lower rate than I had. I'm slowly reducing the dose of that drug at the behest of the lung transplant team so we can see if my immune system is still attacking me. If I come off it totally I can come off lots of other drugs too. That said if I do get a transplant I'll be right back on them all for life so I'll not bother getting used to it.

I wanna speak louder than ritalin

I had a wee adventure yesterday. I made the mistake of not keeping a close enough eye on the level within the liquid oxygen cylinder and it was completely empty so I had to make my monthly trip to see the haematologists at the Beatson without any facial furniture to help me breathe. Curiously I didn't actually feel bad but when they checked my blood oxygen saturation level it was 84%, a good 15 fewer than a normal person and ten lower than I can usually manage when actually using oxygen.

It was strange to feel that my body has got so used to being oxygen deprived that I can't notice when it's really quite badly starved of the stuff. I got the mask on to bring it back up to acceptable levels as soon as I could though, and it turns out that it actually made me feel much better.

All I can really garner from this is that I can go for periods without oxygen but that I have no clue as to when I'm at a dangerously low level. I will therefore never be letting the cylinder run dry ever, ever again.

So two weeks from now I'll be getting poked and prodded to within an inch of my life by a team of doctors and nurses. I don't actually know what I'm walking into to be honest. I don't know what type of tests they've got planned for me and nor do I want to know because that is a surefire path to insomnia and thinking too much about it all. At the moment I'm really content because there's visible progress and that's all I need for now.

Oh aye, other things to tell you. My immunosuppression is being slowly stopped to see how my body copes without it ie will it start attacking itself again, and my weight is all of a sudden 57.2 kg. I've gone up 3 kg in a month. I am absolutely delighted that I'm retaining some weight, although the number of comments from people saying that I look healthy when the word they are really looking for is chubby is amusing me greatly.

Just look them in the eyes and say 'I'm gonna do it anyway'

Everyone's face is asymmetrical but mine has been, and still is in fact, a good bit more asymmetric than usual. I had a surgical extraction of a wisdom tooth done on Tuesday that has left the left side of my face almost as puffed up as when I was on steroids. Having noticed that I realised that I have more about the cheeks in general than I have had in a very long time. I'm by no means fat but I've got more of a face than I've had in a very long time. All of that is a product of the quite wonderful PEG tube that pumps liquid feed into my stomach overnight and a few drugs to stimulate weight gain.

So I'm now at a weight that is acceptable and have fulfilled all the other criteria the transplant team wanted and now I even have a date to go down for my assessment. Mon 27th June is my day for being admitted and I should get home on the Thursday. They can accommodate one person but as both my mother and younger sister want to come along they're going to book into a B&B for those few days. I feel slightly bad for them because they'll be coming down and I'll be getting tests done all day so the only time they'll be able to visit will be at night. I'm sure they'll occupy their time easy enough.

So it's finally arrived - after two years of assorted infections, massive difficulties with weight gain and another few hoops to jump through, I'm now at the stage where they assess every single facet of my condition and what results mean for my condition. This is when I find out if I am suitable for transplant. I've waited for so long for this and I'm so very excited that it's so soon now.

The things we waste trying not to waste our time

I had a phone call from the transplant co-ordinator on Friday asking if I could go down today (Sunday) for all my assessments as someone else had to drop out, therefore leaving the place open for me. Annoyingly I couldn't take them up on that offer because I'm getting a wisdom tooth surgically removed on Tuesday instead. I asked whether it would be better to get that postponed and take the slot but the transplant co-ordinator was adamant I should go and get it done.

One of the first things the transplant team wanted of me was a clean dental bill of health so I can understand why they wanted me to go ahead with that. This is all down to the fact that your mouth is one of the major sources of infection and minimising that gives me a better chance of remaining infection free post transplant. I've heard tales of some people having to have all their teeth removed prior to transplant so I'm considering this a minor inconvenience.

The good thing is that now I know it should only be a matter of weeks rather than months before I do actually go down so I'm getting my stuff ready should I need to go at short notice. I suppose it's my equivalent of a pregnancy bag.

The hardest button to button

Every night I think of Joseph Merrick before I go to sleep. The man, less than affectionately, given the title the Elephant Man comes to mind because of one peculiarity of his life.

Because of the nature of his deformities, namely that the size, shape and weight of his head were so that he couldn't sleep lying down like most normal people do. If we are to believe the play and movie of his life he decided to lie down to sleep one night just to be like normal people. It was his last decision as his windpipe was crushed and he suffocated in his sleep.

My situation is less severe but similar and it's that way for two reasons. As we all know by now my lungs are in a horrible state of disrepair so if I lie down flat while I sleep my lungs compress, just like everyone else's do, but because mine are so scarred they can stick together and that makes them hard to re-inflate of a morning. I also have the PEG tube in my stomach to pump feed in through the night and you need to sit upright (or at least at an arse to back angle of greater than 45 degrees) so that the food can be digested like it normally would. I suppose it makes sense - we're not designed to eat lying down.

So I have an impressive amount of pillows all carefully placed to try and ensure I stay more or less upright through the night. I had a metal frame that's designed for this sort of thing but I just couldn't get comfortable with it so now I make do with my elaborate pillow formation.

It isn't the first time I've had to do this either. Immediately after my Bone Marrow Transplant I had to sleep completely upright for about a month because the radiotherapy had killed the mucous membranes that coat the oesophagus and prevent the acid from your stomach refluxing up into your throat and mouth. If you think that sounds sore it was the most painful thing I've ever endured. Considering I've nailed two of my fingers together with a nail gun, chopped the top off my thumb with a circular saw, and been run over by a forklift truck that's saying something. The pain was kept at bay with morphine, which was not very nice at all. Anyway I've talked about all that before.

So the sleeping upright thing is going ok but it's actually not the easiest thing to manage. Sure you can do it on a bus or a train for a wee while but to get a whole night through without somehow slipping down is surprisingly difficult. When I do wake up lying down all it means to me is that it takes a lot longer for me to get a breath in the morning and I can have a slightly upset and cramped stomach; nothing compared to what poor Mr Merrick went through.

I can show you the world; shining; shimmering; splendid

I've avoided saying anything over the past month or so because I simply couldn't trust my mind to come up with something comprehensible. I've been using diazepam in that time and my mind has been doing all sorts of wandering.

The reason for said drug has been that I've damaged cartilage and ligaments around my ribs so these were prescribed to relax the muscles. They worked a treat but my mind was certainly not my own for any of the time I had any of it in my body.

I'm only taking it very sparingly now so it's back to reality again.

I was at my monthly visit to the Beatson Oncology Centre on monday and had a great chat with my consultant about how things are going. The transplant team want certain criteria fulfilled and my haematology team are concerned about some of them, or at least doing them all at once. I've fulfilled two out of three of the things they want, which as Meat Loaf so eloquently put it, ain't bad.

I'm now the correct weight but I'm going to keep putting some more on in case I lose some if ever I get an infection. I've stopped one of the drugs they wanted me to come off and now there's a dialogue opening between the two teams about the third criteria which is about anti-fungal prophylaxis. It's the drug that was used to beat my aspergillus pneumonia two years ago and I've remained on it since to prevent a relapse. Being honest I don't' really know why this is an issue because post transplant I'll be put on an anti-fungal again. Perhaps a change of specific drug will be the conclusion. I'll let the docs work out the details and carry on as normal.

Also this week I went to visit the Maxillofacial clinic to meet the surgeon who dealt with my dental hygiene post Bone Marrow Transplant. I need to get a little bit of work done to make sure everything is in good order prior to transplant as the immunosuppression given afterwards will leave me open to infection and the first port of call for that sort of thing is the mouth so I'll be going back to the duo of mouthwashes that I used back when I had the BMT. At this point my gums will recede and my teeth will move a little so I have to be observed keenly. It's not the first thing you think about when thinking of transplant surgery but it is really quite important.

I've got a booklet from the transplant team that I've been using with visitors. I used to be very careful and only divulge the bits of information I was happy to dole out to people, and that depended very much on the particular person. Now I'm giving them the booklet to read for themselves so they know a lot more. It also allows them to ask me questions about any aspect of it all. It's not a strategy without flaw and it can be a tough process going through it with someone but it's so much better than how I used to just filter out the scary stuff.

All I ever wanted, all I ever needed is here in my arms

My life very suddenly got annoyingly loud and then disquietingly silent. The oxygen concentrator I use to help me breathe developed a fault overnight and the alarm kept going off so I just turned it off and used the oxygen cylinder I keep for times just like this. It's quite incredible just how quiet the house feels. The concentrator has been there for so long that that we no longer really notice the noise it makes but its absence is eerie.

It makes me think of the prayer, the Desiderata by Max Ehrmann, that I see at the bottom of our hall stairs every time I go past. It starts 'Go placidly amid the noise and the haste and remember what peace there may be in silence'

It's a phrase I've held close to my heart for a long while as it reminds me of my dad. The other prayer that has this effect is the serenity prayer.

God grant me the serenity to accept the things I cannot change;

the courage to change the things I can;

and the wisdom to know the difference

Noble sentiments obviously but He and I disagreed on one part of it only, the first few words, God grant me. My stance was that these are things I have to fight constantly to achieve without the grace of God deigning to bestow such gifts on me. He believed that my ability to display those characteristics was indeed God given.

For all I don't miss church, I miss talking with my dad about his faith and how important it was to him.

The sun and you and me and all the stars that we can see

I went out somewhere that isn't a hospital for the first time in months on sunday night. I went out to the theatre to see a science show called Uncaged Monkeys. It's a spin off from the BBC4 radio show the infinite monkey cage with Brian Cox and Robin Ince.

There were about half a dozen short talks on various aspects of modern science. It was all very informal and actually a lot funnier than I expected it to be. Having spent a lot of my spare time reading assorted science stuff and watching all manner of tv shows on the subject a lot of the material was familiar to me but it was more expansive on a lot of it than a normal show would have been so it was great.

It was the first show of an upcoming tour so I'd recommend it to anyone else who quite likes having their brain exercised. You can get a bit of a taste for what it's like by listening to the Uncaged monkeys podcasts.

It being the first show they were really testing it all out and it was perhaps a little on the long side as even the most attentive person begins to lose focus after a couple of hours of demanding material. I found it really difficult to be stuck in one position for so long and was physically drained afterwards. On leaving I had to just park myself on the kerb outside to try and regain my breath while my friends stood looking concerned and my uncle was away getting the car. I recovered quickly enough but it's not great fun to feel that out of breath.

I'm glad I went out but I've been feeling the effects over the last few days. Despite being far from an exerting trip out it really was exhausting for me. Still glad I did it though - it's great to do something vaguely normal once in a while.

What do you do when all your enemies are friends

I have a new, as yet unnamed, niece.

She'll hopefully get home soon but as she has a wee heart murmur they're wanting to keep an eye on her for a day or so. Apparently these things are quite common in newborns and sort themselves out quickly so it's not a concern but it'll be good to get her and her mammy home.

I've been quiet because I've been a bit under the weather again. Just a couple of chest infections that just make life quite difficult.

I've been thinking over the last few weeks about my meeting with the transplant team last month. I've been digesting what we were talking about and the thing that's been dominating my thoughts is that there's a chance that I won't be able to go ahead with the transplant. I've to go down to Newcastle for four days soon for a barrage of tests to check out all the things that would rule me out and I'm really worried that they'll find something that does.

The thing is I'm never done getting on at my friends for worrying about things that are outwith their control so why am I fixating on so many things that I can't even decide which it is that I'm actually concerned about but I know that I'm more nervous than I've been about anything in my life. The reason for that is of course that my life actually depends on what happens and that kind of focuses the mind.

When I tell anybody about my worries they all tell me not to worry which is easier said than done. The people I usually turn to to talk about these sort of things, and who don't tell me not to worry, are rather annoyingly living in Sydney and San Francisco so it's difficult to get hold of them for a good long chat about it all.

The other thing that arose from that meeting with the transplant team is what it might be like to live post transplant and that has been worrying me as well. I'm rapidly coming to the conclusion that even if it all goes perfectly well I'm not going to be able to get my normal life back. That's not so big a deal as I've got used to having to change my priorities markedly over the period of my illness but that doesn't mean that I'm not worried about what my life will actually entail. The main thing I am concerned about it relationships. I've really excluded myself from anything of that ilk over the last wee while because it's quite simply too difficult for me but that was always in the knowledge that it was temporary. I've reconciled myself to being alone for a while but that doesn't mean that I don't get lonely from time to time. Life post transplant better offer me the chance to get involved in that sort of thing again as I miss it.

They also spoke about survival rates and that has focussed my mind on the nieces and nephews. I know that this is what will kill me eventually. I've come to terms with that. I don't plan on it being any time soon but I do know that either directly or indirectly it is my rejection of my lungs that will eventually get me and that gets me thinking about what I will miss from their lives.

It's orbiting at 90 miles a second, so it's reckoned...

I miss being a teacher. No matter how your day went there was always at least one moment that made me glad that's what I was doing with my life. It being Science makes that a little bit easier obviously as the kids are much more open to learning than I've observed them to be in other subjects.

I got a little bit of that buzz again at the weekend when I got in a lengthy discussion about the universe with my 11 year old niece Maria. It started off with us just talking about how many stars there are in the sky compared to the grains of sand on earth and covered all sorts of stuff about what it takes for life to exist and whether it could happen on other planets.

She was most fascinated though by the knowledge that every particle in her body has, at one stage, been made in a star and showed genuine excitement to know that higher metals like gold are only made in supernovae.

I've been reading loads about all this stuff in recent times, notably the two Carl Sagan books Cosmos and Pale Blue Dot. I've also watched the TV series that accompanied Cosmos which was incredible. I've also been ploughing my way through a few books by Stephen Hawking and Brian Cox to try and polish up my physics a bit.

I've wanted to do so for ages but was always too busy to manage so I suppose this is the benefit of having as much spare time, although I do only get to read things when I'm feeling well enough. My attention span has improved dramatically over the last few months and I've been trying to make hay while the sun shines.

I've also been helped by the BBC and their fantastic Wonders of the Universe show, presented by the aforementioned Dr Cox. It, and its predecessor Wonders of the Solar System, are wonderful examples of what public broadcasting should be about and genuinely make the BBC respected worldwide.

I don't have classes that I can put on to these things but the small victory in at least getting one kid interested in science has fair picked me up.

Stabbed the cerebellum with a curious quill

I've been putting off talking about my friend Gav who died recently. He had gone missing from his home in Glasgow back in November but his body was found near his home in Fife a few weeks ago. Seems he had decided to go there to die. The last time I saw him was at his 30th birthday party and he was in rare form.

I first met him in my time living in Aberdeen. He was one of my then girlfriend Kat's best friends so I was actually quite tense about meeting him, hoping that we would get on well, worrying in the way you do when you start going out with someone and really care what their friends think. I needn't have worried as we hit it off pretty much straight away. All the normal student topics like music, films, politics and philosophies of life were covered and we just got on brilliantly.

I think if one thing is true of Gavin it is that he would hate anyone talking about him to resort to cliché so I'll try and avoid a saccharine sweet version of things.

You see we actually got on so well because Gav liked people that challenged him. If Gav thought you were at least as smart as he was (which was very) then he was brilliant fun to be around. We disagreed on any number of subjects but as long as he thought you were making solid arguments (even if he disagreed with your conclusion) then you would get on great. It was almost like we were engaged in a really slow moving, long-term chess game. I could go for months without seeing him but we could always pick up where we let off the last time we met. I didn't expect things to end with him knocking his king over.

With his wicked intellect and wit though there came some frustrations, which often manifest in his behaviour towards his friends whereby he would often just write them out of his life for a little while. I always worried when he was in the middle of one of those periods, not just for him but for those he was ignoring as it often really upset them. I've since found out that he suffered terribly from cluster headaches and wonder if these things are related and he was just carving out a little space for himself when he wasn't feeling his best by being cruel to his friends. I know I've done similar things.

Like I mentioned earlier it was often at very large intervals that I actually saw Gav, but knowing that I'll never bump into him again is a very strange feeling indeed. Of course there are many, many people who will feel that far stronger than I do and that's who I really feel for. I hope they find some peace.

This is a pic of the three of us in the Bobbin in Aberdeen on Superbowl sunday, all still recovering after the party we had for Katherine's birthday on the friday. Obviously much happier times.

Bless ye pal

In other news I've been laid low with a viral bug so not even been up to turning the 'puter on till today. Feeling much better now but still a bit wheezy. Felt a bit scunnered by it all I have to admit but that always passes when I get better.

It's more than just a question of time

Friday was never going to be a normal day. Aside from the massive build up I had given it in my mind this trip to the transplant clinic was the first time in over ten years of such appointments that I was ever going to have someone else in the consultation with me. In fact I would have three other people with me because my mum, my wee sister and my uncle all wanted to be there. One of the recommendations when you are diagnosed with a serious illness is that you always take someone along with you so that they can also take in all the information and you therefore have a better chance of remembering it all. I've never done it that way and have always gone in alone.

I think it has always given me the choice as to what information I actually divulge to everyone else.

Anyway, It was weird having the three of them there but I'm glad they were as it gave them all the chance to ask questions.

So the appointment itself.

Well the consultant was very relaxed and his first question was to ask me what I hoped for out of this. I told him that I hoped for a new life out of it all as I wasn't really living one just now. He said that was understandable but before he could help that we would have to go through a process where they make sure I am fit for transplant. Now from the information they already have there are already a few issues relating to my previous treatments that mean I won't be a straightforward case, but nothing that rules me out of transplantation. He explained what some of these were but I don't think you need to know all the tedious details.

The next step for me then is to go down to the transplant ward in Newcastle for a four day period of tests that will check every facet of my health - in other words make sure there aren't any reasons for me not to be able to go through transplant. That will be in the next few months.

I've got used to these consultations over the years and the terminology never bothers me greatly but I wonder how well the family coped with having to listen to the consultant talk about five and ten year survival rates post transplant. I've had to listen to that sort of thing a lot over the years and it, perhaps curiously, never bothers me. I seem to just assume I'll be the one who defies the statistics and lives a perfectly normal life afterwards.

Within this bastard's carnival; this vicious cabaret.

Ask me what my favourite books are and I'll earnestly tell you about all the serious, worthy works of literature I adore. I'll happily talk for hours on the subject and the titles I'll quote will be terribly impressive. It's the truth but it's only half the truth.

The same applies with films and tv series. I've got boxsets of the highly respected film directors and some of the most impressive tv series ever made.

I do adore this stuff but again it's only half the story.

Some of my favourite pieces of literature are comic books; some of my favourite films are musicals; and some of my favourite tv series are outrageously camp. Far from this making me a fraud I would argue at great length about the artistic merits of all these art forms next to their more respected contemporaries. I am quite the mincer.

I mention this because of the weekend I just spent watching both the Wizard of Oz, The Rocky Horror Picture Show and the Glee Rocky Horror tribute (3 times if I'm honest).

I first heard the timewarp at a primary school disco (where I was perhaps appropriately dressed as a girl) but it was years before I saw the film where it belonged. I had just gone with my higher maths class to see the musical Return to the Forbidden Planet and enjoyed it so much I decided to see what else in the genre I could get my hands on. It would be ages before another show would be on so I took to finding film versions and I got myself a copy of The Rocky Horror Picture Show. It blew my mind. I didn't get it at all but I didn't care. It was just outrageous and the songs made me laugh and smile. I had long been a fan of classical musicals from years of watching them on telly on holiday afternoons but this was something different.

My favourite musical though isn't one of the outrageously camp ones. It's the Willy Russell classic Blood Brothers. I've been to see it about half a dozen times and I end up in floods of tears every time I go. It never fails to shock me as well, which I love. As Willy Russell himself puts it he didn't write the best musical ever but he did write the best last ten minutes of one. I've been to loads of musicals now and they never fail to make me smile.

While I'm admitting such stuff it's probably fine to get out that I do a tremendous karaoke version of Take Your Mama by the Scissor Sisters, including the falsetto bits.Like I said earlier, a tremendous mincer.

What else should I be, all apologies?

Whenever I have visitors the word fair, along with the words not and bloody, are banded about a fair bit.

I used to rally against such claims because while it wasn't pleasant to be told you had Cancer at 22, I never thought it was unfair. I consoled myself with the adage that the rain falls on the just and unjust alike, and told everyone that it wasn't a matter of fairness at all. It was simply a fact of life. Another way of consoling myself was reminding myself that I was born in an era where the treatments I had were even available. Admittedly it's not really the sort of life I had in mind but all things considered I did brilliantly considering the hand I had been dealt.

I can see this time round though why it's unfair.

Before I went to study in Aberdeen I spoke to my old boss from Cardiff, Graham, and he told me to make sure I was making the right choice because he wondered whether, after what I had gone through I would be as focussed on work. He told me of friends of his that found it difficult to invest in work as much as they had previously. He was right. I found myself struggling to concentrate on the rather important aspect of research of reading all the published material on the subject. My mind would wander and I would just find anything to break it up. I was wasting a huge portion of every day because I couldn't concentrate. It was easier when I was in the lab but I had to do the other stuff too.

Being honest, I plodded my way through my time up there, convincing myself (and my supervisor Rich) over and over that everything would be fine. By the time I came to be seconded away to Belfast to use some of their equipment I was actually doing some really good work and I had convinced myself that everything was going ok. When I finished my lab time at Aberdeen I even got offered a postdoc position back in Belfast which I was thrilled by. I had gone back to do the PhD to prove a point really and the fact that someone had offered me a job doing research completely justified my view that I was doing something worthwhile. The job came with the proviso that I had to submit my PhD thesis within a year of starting, which I thought I would manage no problem.

It wasn't as easy as I had convinced myself it would be.

Sadly, what Graham had told me ages before had been really accurate. With my recovery from the bone marrow transplant I had developed a sense of entitlement about just how much fun I should have in my life. Whenever the choice arose to go out and enjoy my life I would do that rather than the incredibly difficult work of plodding through the work I had actually done and try to put it together into an actual piece of research literature. I was also working quite hard in Belfast (really, I was) and found it difficult to concentrate in the evenings when I was meant to be writing.

So months passed without my getting much of it done and then things just fell apart. Within the space of a few days everything just caved in. One sunday night my friend Ciaran pulled his car over to the side of the road complaining of feeling unwell before passing out and never regaining consciousness. He had recently had a relapse of his own brush with Leukaemia from a decade before but he was feeling fine and had been constantly reassuring me that he would be just fine. He was actually on the way to pick up his girlfriend from the airport when it happened. This obviously knocked me for six but a phone call I received the very next day made it even worse when one of my own docs called to tell me of a positive result for one of the markers for my own Leukaemia. It turned out that it was a false positive but it took two weeks for me to find that out. Two weeks where I was absolutely terrified. No sooner had that passed than my dad called to tell me what tests they were carrying out on him. We both knew what was hanging in the air and just as we knew it would, the diagnosis came of multiple myeloma.

Six weeks after that he was gone. He had called me one night to tell me had been feeling better after steroid treatment and wanted to know if this was a good sign. We had a good wee chat about how what they were doing was minimising the effects of the lesions in his brain and that was why he could think more clearly and feel better. We both knew he wasn't actually getting better but just feeling a little more like his normal self. I kept it together for a while but after he died I fell apart.

I went back to Belfast, because I had to get the thesis written, and I couldn't get anything done at home. I even tried to go back to work but found myself in front of a fume hood looking at all the plumbing work for the reactors and thinking about my dad and just breaking down. So I went back to the doctors who sent me to a grief counsellor. The doctor told me I had the signs of mild depression but curiously no hint of any anxiety to go with it. I had a thesis to write (and a job to keep based on managing that) and I wasn't bothered by it. I honestly tried but I couldn't get my head around any of it any more but I didn't care.

I went to see the counsellor and managed to piece together what I wanted to do. I knew I wasn't bothered enough about the PhD to really do it but I didn't have the guts to tell either my old supervisor Rich or my boss Chris so I kept putting it off till I could put it off no more. I went in and told Chris that I couldn't get it done and he told me then that he couldn't keep me on in that position. It was a massive relief. Telling Rich was harder because he had invested so much more in me and I had let him down. I just couldn't get the work done though and I had to be honest with him.

Graham had been right, my focus hadn't been enough to do it, but I wasn't ashamed of failing to do it. I had got a massive amount from my time as a postgrad student and in the year as a research fellow in Belfast, mostly that I had skills that lay elsewhere. The times all through those years when I found it easy to focus was when I was teaching. It simply comes more naturally to me and being honest with myself now, I was always going to end up teaching. I wouldn't do it at 21 when I was straight out of uni because for one thing I looked younger than most schoolkids and I wasn't ready for it yet.

This all happened in the weeks leading up to my 30th birthday and it just seemed fitting that I would have such a watershed at that time.

So teaching, it turns out is in my case, is actually for people who fail in something else, but I choose to just not see it that way. I was always ending up there, I just took a different route, and was significantly better prepared for a career in it than I would have been in trying to do it earlier.

And this, rather circuitously, brings me to the point I made at the beginning. After years of plodding away in a research environment that I didn't love I was just carrying on with the life I had embarked on prior to diagnosis, and hadn't really changed my life at all. That was always going to catch up with me, and it did so when it was my friend and my dad who got hit with the big C. Their lives gave me a bigger kick in the arse than the events of my own had. I got out of research and took a job in a school as the Science technician to give me a better idea of how life in a school really goes before applying for teacher training. 4 weeks short of finishing that training I took ill and ended up in hospital and I've been broken ever since.

That's not fair. Finally having the guts to admit that what I was doing wasn't what I wanted to (even if it required outside prompting) and getting on to the course I wanted to be on and then falling ill all over gain isn't fair. It's bloody not.

Phew, that was hard work but I'm glad I've got it off my chest.

Come on and wring my neck, just like when a rag gets wet

Well the Steelers got beat in the Superbowl but it was a tremendous game so I'm glad I stayed up to watch it. My dad was a Packers fan as well so minded losing to them less than most teams. Didn't even feel that tired after such little sleep when out at the hospital yesterday either. Nothing to report from the hospital really. Everyone is now waiting with baited breath for the 25th to see what progress can be made.

I mentioned before about when I got into American Football but I forgot to mention that in that first year it was on Channel 4 I was off school when the Superbowl came round. I had been off for a good week or so already with Chickenpox and my mum taped the whole game on the sunday night and I lay on the couch watching it, covered in Calamine lotion and joined by Clare who got the pox just after me. I mention this because of something I've been wondering. I don't know if I have an acquired immunity to Chickenpox anymore. If I still had my own immune system then I'd have the immunity that it grants you. I now have Clare's immune system so, knowing fine well that I had given her the pox, and that she will have immunity, I wonder whether I have all the immunities that Clare picked up prior to the transplant.

It's a question that comes up because lots of my friends have young kids and they don't know whether they can visit if they've been exposed. Probably best to err on the side of caution really.

Another thing that comes to mind from that first Superbowl I watched was that my mum had just set the tape running and gone to bed meaning I got to watch whatever was on straight after it. This happened to be the Stephen King movie Carrie. Almost certainly not a film you want an 8 year old watching but she kept pottering about doing all the myriad tasks that mothers do when there's at least relative calm about the house, so she didn't notice what I was watching. The final scene frightened the absolute bejesus out of me and still shocks me even though I know what's coming. The same is true of the musical Blood Brothers - I know what's coming but still jump out my skin when it actually does.