Time to see what's become of me

In the last few weeks I've had a few very old friends get in touch through the medium of facebook. One I've not seen in the best part of a decade and the others I haven't seen since I was at school 16 years ago. The former of these three was a very close friend when we started at Glasgow Uni, and indeed introduced me to ex love of my life Sam, but when he left we kind of found ourselves moving in different circles and all my moving around the country didn't help. So now having found out that I'm at home he's going to come up and visit.

The other two are both even longer standing friends from back at school. The male one was my best friend from about Primary 5 through to his leaving secondary school at 16. I used to get updates about him from my dad as he is now a plumber and my dad used to help him out with stuff when he came into the shop but since my dad died he has gone abroad to work. Turns out he didn't even know my dad had died so was gutted to find out so long after it happened.

The third one is a girl who I was very fond of at school. She still lives nearby and is going to come up and visit me at some point too.

The reason I mention this is that I don't know how I feel about them coming. On one hand I really want to catch up with them and to tell them my story but I worry that they're going to see me in my current state of disrepair. This, after all, isn't the me that I like people to see. I'm not particularly keen on anyone knowing that I have weaknesses of any sort never mind the range of them that I currently exhibit.

The thing is that while I can handle sympathy for my situation, I worry that some people might pity me. There's a clear distinction in my mind between the two but in my addled state of mind I can't quite find the words to explain it adequately.

Of course rather than fretting about how other people are going to behave, which is quite obviously out of my control, I should concern myself only with how I am going to. These are all people that I was close to at some stage or another and I am genuinely excited to hear their stories, perhaps because when you look at people you went to school with there's a feeling that the path they took is one that was also available to you. They're living lives that could easily have been mine but for a few choices.

With birds I'll share this lonely view

Getting back, somewhat belatedly, to tales of my time immediately post transplant I think we had reached the point where I was recovering well from photopheresis treatments and concluding steroid treatment. I would remain on some form of immunosuppression for another few years yet but it seemed at that point that the aforementioned treatments had been successful in beating my chronic Graft vs Host Disease (GvHD) into submission.

That isn't to say that I emerged totally unscathed from the whole affair. The fact that my rejection problems manifested in my skin and in all the areas with mucous membranes has had long lasting effects that I've quite simply just had to come to terms with. During all the treatments my skin became very thin and porous and in some places it actually tightened. Now this didn't cause much of an issue except in one area where it really did cause a very surprising effect. I developed what they call mephosis. What it actually is is the contraction of the skin that makes up the foreskin which isn't really good for the penis.

So I had to go and see a urologist about what to do about it. As experiences go I can classify it only under the heading of surreal. As I took down my particulars for him to examine me he quite simply said 'Well that'll have to come off' to which I, somewhat shocked replied 'What, all of it?'. After he stopped laughing at my response he explained that all I needed was a circumcision to alleviate the problem. What's amazing about that to me was finding out just how many other people I know who had had the same procedure done. The other funny thing about the whole procedure was having to go through a barrage of tests to see if actually had any STD's before the surgery could take place. I had to go to the normal clinic where people have to queue up OUTSIDE on one of the busiest streets in Glasgow on what they laughingly call a first come, first served basis. There's a lot of people there with faces that just scream regret. That is the bits of their faces that you can see - there is an impressive amount of shoegazing that goes on in these places.

Now all the mucous membranes were affected so my digestive system no longer works as well as it used to, including my mouth flaring up in blood blisters when I eat some foods. Annoyingly this includes some of my favourite foods but I've got used to it now.

The other lasting effect that came about from this time is the one that people see most of because it involves my eyes. I no longer make tears in my left eye because the glands that produce tears have been damaged. This means that I will always have to use artificial tear drops in my left eye to lubricate them. It's not that much of a problem for me but lots of people do seem quite freaked out when I casually put drops in my eyes.

What we didn't know then that we can see retrospectively is that the GvHD in my lungs hadn't completely gone away and was, in actual fact slowly damaging my lungs over the best part of the next decade. It was such a gradual process that it was barely noticeable between each visit to the respiratory docs but it's plain to see looking back the way.

At the end of the photopheresis I had my second Hickman line removed. Sadly this didn't go as easily as the first because this little piece of rubber had decided to graft on to the blood vessels it was attached to. I couldn't get my own internal (or external) organs to recognise that they were part of my own body yet here was a little piece of rubber that my immune system happily accepted as its own. The doc removing it had to do so very slowly making circular cuts around the tube to get it out and this meant that the scar left behind is quite an ugly one right above my left nipple. It essentially looks like I've been stabbed on that side and have a bullet wound in the other where the first one was. Still chicks dig scars so it's all good really.

How 'bout that ever elusive kudos?

So this came to my attention

Link

It's really set my mind going. I have to admit that it's something that has passed through my mind on occasion what I would say to the family of the person whose lungs I receive. I have a little more experience in this than most people would have as I already had one transplant and gone through all the emotions of how to thank the person responsible for saving your life. Of course in that instance I could actually say thank you to my sister whose bone marrow I received. With the next transplant it will of course be the family of the donor I thank and it just seems to me that it will be much more important how I express my thanks in that situation.

Clare knows how much her bone marrow donation means to me and I can express that any time I choose to. As it happens I choose not to actually do so because it kind of passes between us unsaid but I know that I can choose to put it into words whenever I feel like it.

Where I have to thank a grieving family there is significantly more pressure, even more so now I can now see all the beautiful ways in which people have expressed their gratitude before me, but mostly because it's something that is cast in stone and will be cherished. I need to get it absolutely spot on.

We're just a million little Gods causing rainstorms

In the wee small hours of last night's attempt at sleep I had the latest in an occasional series of mishaps. Just after 5 I woke with the crippling sensation that accompanying me in my bed was a pool of liquid. After an exasperated 'oh for fuck's sake' was uttered I took to mopping up the mess. Now this is no teen wet dream scenario for you grubby minded types amusing yourself with such ideas - what had happened was that one of the external plumbing connections that pump liquid food into my stomach overnight through my PEG tube had disconnected (probably caused by my rolling over and twisting it) and was continuing to pump the feed onto my bed.

I did the best I could be bothered to at such an unearthly hour and went back to sleep trying to avoid the wet patch, a manoeuvre I've almost perfected over the years. It is a whole lot easier when you've got the bed to yourself admittedly. I sorted out the plumbing issue but couldn't bring myself to put the feed back on just in case it happened again.

This all happens because I'm actually meant to sleep almost upright when I'm in bed but that only really happens till I doze off and then I slide down and the tossing and turning that accompanies that is what causes the twisting of the tubes, which in turn leads to the, thankfully rare, detachments. It's only happened four times in the year I've had the PEG tube in which is just about the regularity that I can deal with.