Overheard at the Beatson

At the clinic and in the treatment room at the Beatson Oncology Centre there is a certain camaraderie between the patients where old treatment stories are swapped, especially with regard to how long it had been since their diagnosis. The terminology is always the same with people saying 'I've got x years'. In the treatment room in particular you can strike up a good rapport with the patients that you see regularly and reassure each other that whatever they're going through is, for want of a better phrase, normal. That was put to one side on my last visit when I overheard a pair of older fellows chatting away (one had 5 years, the other 3) and one started talking about something that even I at nearly 13 years had never heard of except myself. 

The guy with 3 years was talking about the time he fired a nail through one of his fingers with a nail gun. Now if you had asked me to draw a Venn diagram of people that have done that and also had a bone marrow transplant it would have involved two massive circles overlapping at one tiny point marking me. Alone. Now this guy was a bit different from me in that he was using smooth nails so got a pair of pliers to pull his nail out, leaving only the tiny sliver of metal that joins the nails together in his finger. Apparently after his chemotherapy sessions the little sliver eked its way out of his finger after having lay there for years. It apparently just poked through his skin and then just fell onto the floor with a clink.

Now when I did it I nailed two fingers together in the now almost universal signal for 'fuck off' (or if you're of a certain generation Churchill's victory sign) but I had used barbed nails - the barbs are designed to make sure you can't pull the nail out - and I, being hard as, well nails, decided to pull it out with my teeth. I soon found out that it wasn't for shifting and, more than that, it was rubbing against the bone in my finger which was very sore indeed. When I got to the hospital the doctor treating me so was so thrilled with the X-Ray that he got an extra copy for his own file of interesting cases and took a photo of it before the first attempts to remove it was made. It had to be cut at the top and dragged through rather than out backwards. An incision into the second finger allowed it to be pulled back out of that one. If you're wondering at this point just how you put a nail through your finger in the first place in both cases it was a knot in a piece of wood that the nail bounced against and ricocheted away and into (and in my case through two) fingers. I never got the chance to speak to the man directly as he got his blood results and allowed to go home before I could interject so I never got to ask him if he had ever had an altercation with a circular saw as well. In the same job at the timber yard where I nailed the fingers together I also cut the top off my right thumb with a circular saw. I am immensely proud of the fact that I finished my shift and cycled the seven miles home before my mother demanded I go to the hospital to get it seen to. the thumb got dressed and eventually had to be cauterised after it got infected. I also broke 3 metatarsals in my right foot in my time there (before David Beckham made them famous). It was a happy day when I got moved in to the office at the timber yard. 

Anyway, it's a weird time as not very much is happening in my own life. There are things that concern me going on in some of my friends lives and I'd love to try and crystallise my thoughts on those matters by trying to put them into words here but that would be a terrible breach of trust so I'll keep my own counsel for once.

What I can tell you is a sweet wee story from my Sunday just past. I've spoken before about how I can't clear the mucous from my lungs that normal people can get rid of with an ordinary cough, so for weeks it can build up and leads to a constriction in my windpipe until it eventually loosens itself and it moves and I cough up a large lump and can breathe a bit better again. Now on Sunday one of my three nieces Chloe (3 years old) was sitting talking to me when all of a sudden a plug that had been building moved but I couldn't cough it up. It got stuck in my throat and I was choking and I had to make the (really disgusting) decision to swallow it back rather than asphxyiate. I was genuinely in a bad way but she sat patiently until I got my breath back. Just then her brother Ewan who is four and a half (half years very important at that age) years her senior came in the room where he was given short shrift by Chloe who proclaimed "Uncle Paul's sick Ewan, go away". So she made sure I was ok before going downstairs and asking her granny, who was making me a coffee "Is that for Uncle Paul, he's feeling sick?". So I suspect there might well be another nurse in this next generation of the family. She just sat there unflustered and then when I had my coffee she helped me count out my morning's medication. Bless her, it didn't half make something a bit scary pass without freaking me out.

I belong anywhere but inbetween

Often the days segue effortlessly into one another with nothing to denote their passing but the sport I'm watching on any given day. Then you get periods where lots of things are going on. Mostly I hear very little from the transplant team in Newcastle but, like corporation buses, when you do hear from them you do so in little clusters. And so it was last week when I got a phone call from them asking to get a blood sample taken to check for any changes in the antibodies in my blood. This is routine so I was expecting it but what I wasn't expecting was the chat with the transplant co-ordinator Kirstie. We have a great relationship so she was asking how I'm coping with the wait and if I'm staying infection free (the main point really) and she then told me that they're getting plenty of offers of lungs that would have suited me in tissue and blood type wise but were the wrong size and shape for my chest cavity. Now back up a bit here, shape? I had always known that as well as tissue and blood type that lung size is important because the new ones have to fit in the gap that the old ones left but I also know that, even though I'm a short arse, I have a chest cavity and lungs the size of an average sized man. I never knew that lung shape deviated so much for it to be an issue but when you stop and think about it logically then of course it makes a difference. It was just a bit of a shock to hear it said aloud.

Still the main point is that even though these lungs weren't suitable for me, Kirstie is as confident as you can be about such things that it is simply a matter of time before they get a full match for me and that the lungs will be viable. While I don't have quite the same level of peril that a Cystic Fibrosis patient has in this situation of lungs that are deteriorating rapidly I do still have some deterioration, albeit mild, so I should be able to last as long as it takes to find a match without any dramas.

The other thing the team were in touch about was the clinical trial that I'm on. I'll briefly go over it for those who have forgotten about it. The trial is on a process called Ex-vivo Lung Perfusion where they take harvested lungs and, using a modified heart-lung bypass machine flood the lungs with oxygen and electrolyte solutions to not only identify more clearly which lungs are actually genuinely viable, but to increase the numbers of them which are good for transplant. Lungs are notoriously difficult to gauge and so the number of them that make it through from harvest to transplant was, up until this trial started, a paltry 20%. So only 1 in 5 were of use. With the EvLP technique that number is now approaching 60%, trebling the number of lungs that can be used. This increases everybody's chances of a match but, perhaps more importantly, gives the doctors a much better understanding of what constitutes a viable set of lungs in the first place. Now the team behind the trial were in contact with new consent forms for me to sign as the trial, which is now a worldwide team effort, has changed in such ways that they legally need me to sign off as still being willing to participate. The news that instead of using the modified bypass machine a bespoke instrument is now being used for the procedure I see as a great leap forward and can find no reason at all to not remain on the list. I might get a set of lungs that's been through it and I might get a conventional set, I don't care really, except the science nerd in me wants to have been part of something groundbreaking. A particularly idiotic thought bearing in mind just how amazing simply having a conventional transplant really is if you stop and think of the logistics of it all.

So there we are, things are looking good and at a year past my being placed on the transplant list I'm still well within the average time it takes to reach transplant so I'm relatively happy. I'd be happier if I could get out more but that hasn't been an issue of late as lots of people have come to see me. The main one being my best friend Dave, who currently lives in America. He's been all over the place for the last 6 or 7 years so when he is home he does seem to spend a lot of time here. In his week and a half at home I had three sessions; two of about four hours with other friends present and one seven hour session just us watching the tennis. This harked back to my time post bone marrow transplant when Dave and another mate Owen would give up their Friday nights out in town to come and sit with me, and they'd get drunk and eat Haribo sweets while we watched the wrestling and they eventually fell asleep sometime in the small hours before getting poured into a taxi home. Dave worked his way through 11 bottles of beer and a bottle of wine (and a bag of Haribo sweets) during those seven hours for which I can only praise him. He's a machine - he was getting through a bottle of beer nearly every other game at one point it was so tense. It was the Murray - Verdasco match where Murray came from two sets down to win so it was perhaps understandable.

So he's away back again but he's back in August to deal with selling his flat in Glasgow and it'll be great to see him again. I really do miss him terribly. In reality him and Owen have always been the two friends who would visit the most often as well as rallying others to visit too and now they've gone and moved to different countries like the self centred bastards they are. 

Dave's got all sorts of plans for the two of us once I'm well enough to execute them. I think thoughts like that keep him going to be honest so I'm never going to disabuse him of the notion that I'll be in anything other than full health again post transplant. He deserves the hope.