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.

Here we go Steelers, here we go...

It's a long day of sports watching for me. At noon today it was the Glasgow derby with Celtic visiting Ibrox in the Scottish Cup.I watched it with my Rangers supporting nephew Daniel, which was an exercise in being patient. Not because he supports Rangers but because he does it with such enthusiasm and with a barrage of questions. For a boy who is just shy of 6 his understanding of football really is tremendous even if it is mostly about 'them'. A draw kept us both kind of happy - it was a great game as far as these things go so we each had our moments of gently poking fun at the other.

I'll probably go for a nap early this evening in preparation for staying up into the wee small hours for the Superbowl. I do this every year regardless of which teams have made it to the big show but tonight my team, the Pittsburgh Steelers, have made it there again so I absolutely have to stay up.

I first got into American football about 25 years ago when it first came on Channel 4. When we were on holiday that year my mother saw a shop that was selling American Football merchandise. I picked out the Steelers jumper as the one I wanted and that was me stuck with them. That arbitrary decision hasn't worked out bad though as I managed to pick the most successful team in NFL history. Here's a pic of me wearing said jumper with my siblings (plus Alicia's best friend Mags Mac in the pink jumper) at what appears to be Janine's birthday. I am told I was very cute indeed.

I got a DVD set at Christmas chronicling the stories of the 6 previous Superbowls they've won as well as a book on the team's history.

So I'll be up for most of the night tonight and then have to go to my monthly trip to the Beatson for my appointment with the haematologists/oncologists. It's not that far away from my normal sleep patterns anyway as I often find myself just sleeping for four hours or so and then sleeping a little bit in the afternoon so I'll do the same tomorrow. In fact I'm getting my usual infusion of immunoglobulins while I'm there and that takes a few hours so I can probably get a sleep while I'm in there.

Day upon day of this wandering gets you down

Today is the tenth anniversary of my Bone Marrow Transplant, where my dear sister had surgery where four massive needles were placed in her hips while I slept off the exhaustion from radiotherapy.

So I've had another person's blood coursing round my body for a decade now, and it's been interesting to say the least. On the plus side it's blood that isn't the poisoned mess that my own blood had become but the trade off has been that it isn't convinced it's in the right body and there's nothing much we've been able to do to convince it otherwise so at various stages over this past decade it has terrorised my insides (and outsides) and made at least one attempt to actually kill me.

So you could say I've got a bit of a troubled relationship with my blood. I need it, but as with quite a few relationships I've had, it doesn't really care for me. So onwards we plod in our own little twisted relationship in the hope that things will just work themselves out. Unlike real life though this isn't quite as vain a hope as it sounds because there are actually occasional signs that it has finally got used to me and isn't bothered with attacking me anymore. That might just be down to the fact that I've been taking immunosuppressive drugs constantly for the last few years but if that's the case then it will probably just mean that I'll have to resign myself to taking them forever. I had kind of reached acceptance of that already as if I get a lung transplant I'll need to take them anyway so it doesn't bother me.

What it means though is that when I do eventually get a new set of lungs they should last a while - hopefully longer than it took for this pair to be destroyed.

On that front I get to meet the transplant team on the 25th of February. I can't wait for it although I need to put the weight back on that I've lost over the last week or so.