Let it go, and so fade away

I've waited a few days till I felt I had my thoughts clear on the topic before I tried to articulate them on the events of the last week or so.

First off I have to admit that I've never found myself comfortable in a crematorium. I know that may sound a stupid thing to say considering the reasons you find yourself in them but I've been to dozens of funerals in churches that haven't felt quite as cold physically or metaphorically as the crematoriums I've had the misfortune to be in. I don't think it's helped by the fact that, and I really hope you'll pardon the expression here, but that they're a conveyor belt for saying goodbye. You have your one hour slot and that's it, you have to leave and empty the car park for the next group of grieving families and friends. As a direct result of that prompting I didn't get a fair chance to talk to or even say goodbye to some of the people that were there that had to get back to work, having foolishly just assumed that everyone has the same free time as I do.

Having said all that the service itself was genuinely lovely and the eulogy for Alice Anne was not only funny but it encapsulated certainly what I thought of her and knew of her. That a life can be compressed into a ten minute eulogy is of course to leave out a staggering amount of what made them the person that each of us loved in our own personal ways but it was a credit to those that put it together that it made me smile through the tears.

In the period before we were shooed away from the front of the building I had to wait to try and catch people's attention so they could come over to me as being stuck in the wheelchair meant I couldn't just go over myself. I had been a bit worried beforehand that those who hadn't seen me in the last couple of years might be a bit freaked out by the chair and the tubes but if they did they hid it rather well. It was a self centred conceit obviously but I was so worried that me appearing to be sick on what was an already very traumatic day might have been upsetting to some. Not a bit of it though, I was treated just like everyone else and rightly so.

When I caught sight of the girls from school I got up out the chair to give as many of them a hug and a kiss as I could before having to sit down again. I even got a great big hug from Maureen's mum who I hadn't actually seen in years but who asks after me regularly when she bumps into my own mum around town. I've always had a soft spot for Mrs B as she's one of the few people who saw me in the immediate post bone marrow transplant period when I was still bald and had a feeding tube up my nose and she spoke to me like there was nothing untoward at all about that and never saw fit to patronise me the way plenty of others did. She just simply asked me how things were going so she could pass on news of progress to Maureen.

When we moved across to the function suite for the post service coffee and sandwiches me, my big sis and niece Maria sat with the girls who had remained and had a lovely chat about what was going on in all of our lives. Naturally I hogged the conversation a bit, letting them know exactly what stage I'm at in the pursuit of a new set of lungs and that I'm staying at home while waiting. I hope that I can get some of these new old friends to become part of my roster of visitors because it really was wonderful seeing them all again. Like it always was with Alice Anne, the years just rolled away and we talked like no time at all had passed. I'd love to hear more from them all about where their lives have taken them in the meantime though.

When time came to leave we had a brief chance to speak to Alice Anne's husband who was impressed with my decision to wear my Celtic tie as he felt she would have found it entirely appropriate and I explained the story of her meeting my parents up at Aberdeen and the press photo from it which raised a smile, but because my oxygen supply wouldn't last much longer I had to excuse myself from going to join the remainder of people from going to the pub. He said that was certainly an original reason for someone to have to leave. I got wheeled up to the car park and went over to see all the girls off by again making the effort to get out the chair for another hug for them all. I've always been a tactile person and these hugs were entirely for my benefit. I just about managed to stifle the tears.

I don't know if anything will change as we've all been living parallel lives for so many years but as I said in my previous post on the subject the friends you make at school are the ones you feel know you the best and force you to be the most honest with.

When I got home my mind was still racing with thoughts of Alice Anne but then after a couple of hours I hit a brick wall and thought I would just have an hour or so of a snooze and woke up five hours later. The day had obviously taken an emotional and a physical toll.

One of the things that I've had to address in this last week or so is that I'm not prepared in case something happens to me, so I've started to consider the realities of the many varied ways in which I could find myself shuffling off this mortal coil. This isn't a morbid pursuit, it is entirely practical  because I'm at risk every single day, whether it be down to the fact I'm so open to an opportunistic infection destroying what little lung function I have before I even reach transplant or the very real likelihood that something could go wrong in the operation itself, should it come. How to let everyone know is the main thing that concerns me and I want to minimise the trauma that my sisters will have to endure so picking people that need to be phoned and told directly and those who can disseminate the news through my friends from my time in Cardiff, Aberdeen, Belfast, Liverpool and here at home needs to be done. I also have to think about how I want to be treated. Honestly in spite of my not considering myself Catholic these days I think that the fact that so many of my family and friends are would push me towards having an entirely Catholic ceremony and burial. From preparing the booklet for my dad's funeral service I feel I have a notion of what I want to be read and sung at the mass, as well as who I want to be delivering the readings, carrying my body in and out of the Church and even lowering me into the ground. I have such a firm grasp on these ideas because of what happened to me a couple of years ago. When I was in the hospital and weighing only 41kg and dangerously close to my organs shutting down I had plenty of time to think not only about the likelihood of it happening, but also that I wasn't at all scared of it. In a chat with my ex Katherine this week I even admitted for the first time that there have been the odd few times where I honestly thought I didn't have enough fight left in me to go on. I'd never admitted that to a single soul before and I was in floods of tears telling her but having been reassured by her that it would have been mental if I had never had those thoughts I feel it's safe to share with a wider audience now. Anyway, those feelings passed and it turns out I'm incredibly stubborn and got through it and now I couldn't be further from feeling like that.

So, it turns out that the death of a dear friend has forced me into thoughts that I really hope people don't perceive as self-indulgence and take at face value as the thoughts of someone who is now just a little bit more aware of how fragile life is.

Goodbye my friend

I'm struggling somewhat at the moment. I've barely slept over the last few days because my brain is buzzing, and not in a good way. If you'll indulge my self involvement for a moment I'll tell you why.

I found out late last week that one of my friends from my time at school, Alice Anne, had died. In fact she had taken her own life, I'm sad to say. Now this has totally and utterly pulled the rug out from under my feet. You see I've spent the last twelve years or so of my life living with the notion that, due to my incredibly complicated medical history, that my luck wouldn't hold out forever and one of the infections that I get would eventually kill me. I've come to terms with that, I had to when I was lying in a hospital bed in isolation and weighing 41kg and barely hanging on as my body of doctors fought to repair my bedraggled body. Now, aside from the permanent issue with the lungs, I'm the most stable I've been for years but still all it would take is one infection to beat all my defences. Now I've got rather good at self diagnosis and can spot something brewing and act accordingly but like I said I've always laboured under what now appears to be the misapprehension that I would be the first of what my best friend Dave today rather eloquently called 'The Old Team' to go. I was prepared for that; what I wasn't prepared for was this.

Just over a year ago I spoke of my friend Gavin taking his own life and how it affected me but this is just another level entirely. Gav was someone I knew as a fully fledged adult and you can only really know so much about your adult friends but Alice Anne was someone I went through secondary school with. Like Dave said, The Old Team, and they REALLY know your whole story, so you can't kid them on. Her parents were friends of my mum and dads so she was one of the first people from a different primary school that I sought out when I started there back in 1989. Hers was a family of seven kids and mine has five and there was a fair bit of overlap between our families. It seemed like every other year had a Devlin kid or a Kilday one. It's incredibly facile to eulogise about someone when they've died and ignore their flaws but from my perspective she was always one of the good ones. I think I liked her so because she was not only gregarious but there was a mischief with her that highlighted a very keen intellect. We sat together in our Standard Grade English class for only a short while as we were always getting the other one in trouble for talking, mostly in rather cruel terms about whatever literary 'masterpiece' we were being peddled at the time. She really did get me into trouble as often as I did her which I found to be a rare talent for a girl. As was the practice of the time (and probably still is now actually) in matters of the heart it is the best friend who tells a second year boy that he is no longer going out with her best friend and indeed it did fall to Alice Anne to deliver that news to me that I was indeed no longer her best friend Maureen's boyfriend. She took me aside and told me in the most caring and compassionate way that such a devastating blow to the fragile ego of a 13 year old can be delivered, giving me a big hug afterwards. 

She was a talented musician and artist, whereas I was far more maths and science so later years in school we were in fewer and fewer of each others classes but remained good, solid friends.

After we left school we met occasionally in the west end of Glasgow round about the Glasgow Uni campus and no matter how long it had been between these sporadic meetings we just lapsed back into the old routine and talked as if no time at all had passed between.

After Uni I moved away so even these chance encounters were to be no more but on very rare occasions she bumped into my parents at Celtic games and I would get an update on how she was getting on. On one of her meetings with my parenting team both they, my sister Janine and cousin Andrew as well as Alice Anne and her husband managed to get into a press picture of the crowd at the game up at Aberdeen so when she found out of my dad passing away she hunted it down and it still takes pride of place as the background on my mum's laptop. Later on the advent of Facebook allowed us to get back in touch and again we spoke like we had never been out of contact. I find that to be true of all the best relationships I have in my life. I can go months and even years without speaking to some of my friends and yet lapse into conversation like there's been no gap at all. 

I think that's what I'm struggling to come to terms with. Intermittent as they were, I always loved having a chat with Alice Anne and knowing that I'll never have the pleasure again is cutting me deeply. Of the stages of grief I'm still firmly in the denial stage thinking that it just can't be true. I've had a bit of a chat with the aforementioned Maureen about it all (she too is one of those friends I can go months without speaking to but don't miss a heartbeat when we start up again) and I can only imagine she's feeling it a lot harder than I am especially as she's had to break the news to a lot of people. I've done the same and literally talked myself hoarse going through the tragic story to the other members of The Old Team.

There is a service on Thursday at Perth Crematorium which is well within my range for my portable oxygen cylinder so I'm going up for it. Most of the people that I'll see there know that my health hasn't been the best but I hope they're not too upset by the sight of me being pushed in my wheelchair by either my sister Clare or my niece Maria (I've yet to decide which of them I trust more with steering) and with the tubes pumping the oxygen into my battered lungs.

As I learned through a similar thing happening with Gav, the only way I could find consolation is that whatever was going on in their lives and whatever demons they were facing, knowing that they are at peace now brings some comfort. It's not much comfort. In fact it's nowhere near enough but it's all I've got so I've got to cling to it.

Rest in Peace my friend - I hope you knew how much you were  loved

Paul

Who would know what could've been?

As someone who used to have a form of Leukaemia I receive a periodical quarterly called Journey, which is about all new treatments and stories about patients who have gone through one of the many varied forms of blood cancers.

I don't wish to be mean about it but they regard the stories as inspirational whereas I just find them to be saccharine sweet tales of how some family got through their own particular battle with their disease. They are usually double page spreads that simply don't allow for any in depth analysis of what happened to them and how they came through it, which I feel would be genuinely beneficial to other sufferers. The last thing patients need to be is patronised in my opinion and these pointless couple of hundred words can only really convey the message 'Look, this person didn't die so you might not too' and while that is an important and inspirational message it's quite simply not enough. 

What you also get in the magazine which I do like are updates on treatments that have been developed for individual types of blood cancer. This month it happens to mention my own type, Chronic Myeloid Leukaemia (CML) and the real progress being made in rendering that a disease that can be eradicated from the body. Back when I was first diagnosed there was a drug in trials called ST-571 that later became known as Imatinib (or Glivec) which was showing great results to that end. Over the decade or so in between some problems with taking that have been found and so the drug has been modified accordingly and the latest trial is using Diatinib and the results so far have been startling, showing large numbers of patients going into what is called major molecular remission, where the leukaemia cannot be detected.

Now part of me reads that with glee and another part wishes that it was me that was able to get such a treatment. Now that doesn't last very long as I'm crucially aware that we made all the right choices with the tools we had available at the time but my current condition is a bi-product of the treatment I underwent to cure me. There's no way of knowing what path my life would have taken if I had taken Imatinib rather than taking the Bone Marrow Transplant, especially bearing in mind that some patients who did take it then had to go on the Bone Marrow Registry so they could get a transplant because the Imatinib was no longer working for them. I was astronomically lucky to have a willing donor already and I regarded it as being a real kick in the teeth to those other patients who were waiting on a match if I didn't take my chance to be cured. I know you're meant to make decisions on your own health based only on what affects you but I wouldn't have been able to talk to the other patients again if I hadn't taken the plunge. I wish nothing but the best for the patients who are now receiving Diatinib and hope that it does prove to be the success it's currently looking like, but I'm man enough to admit I'm jealous of them.

These past couple of weeks I've been reading a lot about what my big operation would entail. The best information I have found is in patients' blogs. It's not something I'll talk about here as I know there are some who read this who don't want to read all the gory details but I will provide a link to one such blog of a recent transplantee who kept a tremendous record of what went on during the whole thing.

Tor's Transplant

You need to scroll down a bit past the latest posts about her life post transplant as it's in chronological order from the newest down like mine but the posts entitled Transplant 1 and Transplant 2 are what you're looking for if you're so inclined. It's far from easy reading so if you don't want to know all the grisly details then perhaps you're better not reading it. You will of course get all that stuff when it's me going through it but remember I am a different patient to the Cystic Fibrosis ones so there will be differences in the treatment during and post transplant.