I know a place where I can go....

I appear to still be buzzing on the adrenaline kick from the evening I spent at one of my best friend Lynn's wedding to her wonderful husband Craig so I thought I'd write about it while the memories are fresh. Lynn wrote about me way back in the early days of this blog which you can find here. Yes, I have used a line from the same song in this post title but it's my favourite 'Lynn song'.

There were three of us from our group of friends invited for the whole day but, after a discussion with Lynn about how I only managed my own sister's wedding by having a hotel room to go to for a two hour nap halfway through the day, we decided that I would only go in the evening to maximise the fun I could have.

My good friend Martin was driving so came and got me and we took a slow drive up to the beautiful Ross Priory on the shores of Loch Lomond for the night. Apparently it is a site of great significance for the family, as borne out by the photo album Keith (Lynn's dad) passed around showing her and her family going there together ever since they were kids.

I had a nice chat with Keith where I told him one of my regrets of not making the full day was missing his speech. He's a big, gentle fellow who you could quite easily mistake for shy but when he has something to say it's always worth listening to. I reminded him of a speech he gave at a birthday party for Lynn when they first moved away to Warrington and he was amazed I remembered it. When I got a chance to speak to Yvonne (Lynn's mum) I mentioned this too and I nearly set her off crying as she was so touched. I actually did set her crying when I told her the story behind my new ring (from a previous post) as she is a geneticist so understands DNA more than most. I love them dearly as a family. Here's Keith and Yvonne up for a wee dance

And here's one of Lynn and Craig up for a dance too. Their wee girl, Tara, is the wee girl on the left in the foreground

Craig, the groom is a worthy addition to the family too. He took a bit of time to do the usual few minutes thanks that you can get from a groom at their wedding but set aside special time for me to thank me for the present I had got them. Here it is

It comes with the definition of an 'infinity table', which I thought was the perfect sentiment for a wedding gift, but I also just thought it was beautiful, which the whole family agreed on. I totally stumbled across it by accident as well. A nice, serendipitous find.

A decent bunch of our old school friends were there, which is always great fun - it is often hard to get all the ones with families together all at the one time - but this had the added bonus of there being a few other people who we had been at university with who, we get to see with even less regularity (it's now 17 years since we graduated after all). One exception who I get to see occasionally is Lynn's best friend Marelle, who I occasionally bump into in the hospitals of Glasgow as she is a nurse practitioner who also, it turns out, happens to be good pals with my dietitian Claire, who lets her know how things are going on the medical front when I haven't seen her in a while.

Of the old school friends that were there, my own best friend Dave unwittingly stole a wee bit of the wedding party's thunder by letting us all know that his girlfriend Kate, who late next year will also become his wife, is pregnant. I'm so thrilled for them both. My own situation dictates that if I get the transplant in time I will be going over to Slovakia under very carefully constructed doctors orders. If I still haven't got the call then we need to have a chat about whether I could hire a portable oxygen concentrator that would allow me to make the journey. It would obviously be a massive undertaking but it's my best friend's wedding. If we concede that it would be folly to, for instance, go in an aeroplane for over four hours with the recycled air of a few hundred people with whatever bugs they are carrying then I suppose I will have to just wait for the much larger ceremony they're having a month later back in Scotland. I'm not going to lie I'd be gutted to not go but I have to be sensible.

Getting back to happy stuff from the wedding it was so nice to see not just the friends from school and university but to see some of the other friends Lynn has picked up along her wander through life as well, some of whom I know well and others I only really know in passing. One of my highlights of the evening though was meeting Lynn's cousin Emma again for the first time in what must be about a dozen years. I've always had a soft spot for Emma ever since we had a couple of snogs at family parties way back in the mid 90's when we were really just kids. She's turned out to be a beautiful young woman with an adoring husband and two kids in tow too. Somehow I managed to live about half a mile away from her in Belfast for two years without either of us knowing about it, which is a shame, but I'm so glad to see her looking so happy and it is to her immense credit that she didn't flinch when faced with me in a wheelchair and my facial furniture. She, like the whole family really, were just wonderful in saying they were keeping me in their thoughts and prayers. You can't ask for much more than that really.

Another wee thing that pleased me was that the DJ played the Bluebells' song Young at Heart, which was just perfect as it was exactly 22 years since my big sister Clare got married and at her own wedding she got up and sang the full song with the band.

I'd rather lead and be mistaken than following and faking

I feel there are many misconceptions amongst those who know me about my situation, both currently and historically speaking. I've already covered people's misunderstanding of the 'transplant list' so I'm not going to bother treading that path again.

To start with, outside of my family but including my closest of friends, there are at most a handful of people who could tell you what form of Leukaemia I had. This is by no means a criticism of them for it, especially after so much time has passed, they're just not details people. They only want the bigger picture and all they heard back then was a word I didn't even use, Cancer.

Chronic Myeloid Leukaemia by the way, just in case you were wondering.

The other prime misunderstanding back then was the Bone Marrow Transplant (BMT). Almost everyone thought that I had to undergo an operation in tandem with my donor to receive the transplanted good stuff. The truth is much more tedious for the recipient as it goes and it's only the donor that has to undergo an operation. The recipient just gets it into their Hickman Line in an oversize blood bag. Nowadays very few donors even have to go through that as fewer and fewer patients are receiving full bone marrow and are getting stem cell transplants instead, which can be collected from blood. So I didn't even have an operation then, and that got me thinking about the distinction between operations and procedures. Is it just a matter of semantics? 

In my head an operation is something for which you receive a general anaesthetic and a procedure can be done under a local. Is that right though because the only operation I have had under that definition was relatively trivial (a circumcision required after my new immune system started attacking my skin) whilst I have had really aggressive procedures done while just under local anaesthetic?

Whilst I have been mildly sedated for some of them, most of them I was absolutely wide awake for. They can be broadly grouped together:

Bone Marrow Aspirates/Trephines - these involve piercing your hip bone with a pretty hefty needle to get a sample of bone marrow and a special tool for taking a chip of bone for diagnosis or analysis. I've had several of the former and thankfully only a couple of the latter. The first one I got I didn't get sedated at all but realised after that first one the sedation is as much for the benefit of the Doctor as you as it's not a nice thing to do to someone that's totally conscious. Similar to the aspirate is the spinal tap, which I had once to confirm viral meningitis.

Hickman Line Insertions - prior to starting the treatment for the BMT I had a line inserted into the superior vena cava (the main vein going into the heart) which allowed blood to be taken and drugs to be given much more easily than constantly attacking veins (chemotherapy would destroy a normal vein). My line had a splitter and each of these had another so you could have four pumps pushing medicines into you at any given time. On a few occasions we even piggybacked another medication onto a line so actually had five things going at once. The insertion of these lines is done under local anaesthetic so the doctor can chat you through it. I've had to have two in - the first got infected, perhaps unsurprisingly as it does involve an open wound in your chest - and the worst part of it was when a junior surgeon speared the vein in the back of my hand and injected 10 ml of saline directly into the tissue. The pain was such a shock. Otherwise they were perfectly uneventful procedures although the surgeon having to kneel on the operating table to thread the line in was a bit odd I suppose. I mentioned the first one coming out through infection. This was incredibly easy but the second one was in for a lot longer and had to be slowly, meticulously cut out as it had grafted on to the blood vessel, and so I have one tiny, perfect bullet hole of a scar on one side of my chest and one brutally ugly stab wound of a scar on the other from the removal of the lines.

Assorted -oscopies - These have almost all been bronchoscopies as the main focus of my treatment post BMT, as I'm sure you all know by now has been my lungs thanks to my immune system's lingering doubts about their provenance. I have had about a dozen bronchoscopies now, starting with the diagnostic ones to ascertain whether the Total Body Irradiation (TBI) I received in preparation for the BMT had scarred my lung tissue. Of course you know the result of those initial investigations. Over the years I had to have several more of them because I was incurring more damage to the lungs due to recurring bouts of pneumonia and the cause of this was found to be a cyst, which was later removed in one of their incursions. Dependent on the preference of the surgeon on the day the bronchoscopies are began either by insertion of the scope into the nose or the mouth. The mouth is easier on the patient but the nose is favoured by most surgeons as it means easier access past the epiglottis at the back of your throat. I've had so many now I can direct the surgeon to my left nostril as a couple of nose breaks from my youth have left the right nostril badly scarred so the scope won't get past it. There's no getting away from it, getting a tube up your nose and then going down the back of your throat stings a little and the local anaesthetic spray, that they laughably make banana flavoured as if that's going to make it better, does little to relieve it.

When I had fungal pneumonia down in Liverpool, the first real big step towards my total lung failure, I had a particular type of bronchoscopy where they flood your lungs one at a time with a solution to clear them out of the bad shit from the infection. It literally amounts to them drowning you a lung at a time and, even though sedated for it, it was one of the most terrifying things I've undergone.

I've had a couple of scopes down into my stomach too for the insertion and removal of the PEG tube used for feeding me when I was unable to tolerate normal food and was so dangerously thin - remember at one point I was a lowly 41kg. These have been relatively incident free apart from the fact that to get a good view of what is going on in your stomach they have to pump air in and you, while sedated, have to try and hold that air in, which is a lot harder than it sounds. Normally you can remove the PEG tube just with a bit of brute force and ignorance but mine wouldn't shift so I had to have it removed the way they put it in. The fact I had a tube in my stomach to feed me has left me with what is essentially a second belly button, which amuses the children in my family greatly.

I've also had a few Naso-Gastric tubes inserted for feeding but they are a piece of piss after the initial shick of the tube going up your nose.

The only other procedures I've had done really have been on my eyes. Again because of long term effects of radiotherapy my left eye doesn't make enough tears for a good coating of the eye. Assorted efforts have been made to fix this which all centre round the idea that most of your tears actually go down your nose and we were trying to divert that stream to my eye instead. The first few attempts to remedy this involved pushing silica plugs along my tear ducts to block the nasal canal. Unfortunately for me these plugs wouldn't stay in place and would eventually come back out the tear duct in my left eye. A final attempt to fix this issue was made by pushing a cauterising needle along the tear duct and burning the flesh so as to permanently block the duct down the nose. This is every bit as grim as it sounds as you have to lie completely still while staring upwards into a bright light while someone sticks needles in your eyes. As well as that because of the nature of what they're doing you can smell the flesh at the top of your nose burning. It's not quite the lovely smell of a barbecue let me put it that way. Anyway, apparently I healed too well and the duct didn't close adequately and I didn't want a repeat so I have resigned myself to using artificial tears for my remaining days.

As for the one, true operation I have had. I suppose an explanation is required. Post BMT i developed Graft vs Host Disease, which is where, instead of me rejecting the bone marrow it was rejecting me, starting with my skin. It started off just getting red but that graduated to becoming inflamed and then getting paper thin and tightening. The one area where this was a pressing issue was the foreskin so I had to go and see a urologist about it. Upon his first inspection of my jiggly bits he said "Oh that'll have to come off" to which I terrifyingly replied "What, all of it?". After he stopped laughing he said that he just meant the foreskin. I didn't understand then why I needed a general anaesthetic for this but as I was wheeled into the prep. room prior to the surgery I could see into the theatre where the aforementioned doctor was admiring all his scalpels and all of a sudden it made perfect sense.

So there you go. I hope that's cleared a few things up for you all.

Christ, you know it ain't easy

So I have had a wee bit of a chest infection for the last week or so. No big deal really and just the same course of meds to kick it to fuck and then a wee period where I slowly get back to normal. The few weeks before that though there was definitely something wrong that wasn't infection related as I was exhausted all the time without there being any obvious reason to be.

I got to thinking that maybe this is my new reality and that the progressive nature of my Bronchiolitis  was to blame, which was a bit depressing really. At those times I usually try my best to hide that I'm feeling down by somewhat overcompensating but this time I just retreated into my shell a bit.

During that time though it was time for a review with my lipoproteins consultant to look at my cholesterol amongst other things. Mine had gone mental during the period where I was pumping liquid fat into my stomach through a PEG tube and so required a statin drug to bring it back down. My ongoing battle between what is a good weight to be and how much I want to eat (not helped by my drug regime) meant my cholesterol level had gone up a little so it's just a matter of altering my dose for little while. Again, no big deal.

The other thing he noticed from my previous bloods taken was my thyroxin level was low so he wanted to check it again to see if it was an abnormal result or if it was something we need to address. This was something I had been warned about pre-radiotherapy, that my thyroid would eventually stop working as well, but after fifteen years I thought I had kind of gotten away with it.

So after the results came back he sent me and my GP a letter saying that I was to start on a small dose of levothyroxin as I was definitely showing signs of hypothyroidism. You folks know me well enough to know by now that I was already looking into symptoms and all of a sudden everything made sense.

Click on the word here for the list of symptoms

Going through them all suddenly everything made sense. Almost every one of those I had exhibited, except the periods obviously - they've been just fine, thanks. Even ones like the tingling in my hands had been bothering me but not enough to bring it up with a doctor admittedly. It might sound peculiar but I was thrilled with the diagnosis. Now we can do something about it.

Now, in other news I've been toying with the idea of a DNA double helix ring for ages (seeing as my Leukaemia was caused by a mutation of it) so after a lot of fannying about and changing my mind about what I wanted I ordered a polished silver version of this

Lovely isn't it? I had to get it specially made though and I totally underestimated how fat my fingers are so when it arrived I realised it only fit on my pinky and I don't really want to be that guy.

So, because it was a bespoke piece I couldn't send it back and I thought I've got oodles of family so one of them can have it. Perhaps it was fate that the sister with whom I actually share DNA was the only one present whom it fit. So she is receiving a rather special birthday present this year.

That didn't really help me though so I went back to searching for one for me; one that wasn't identical but ran with the theme. I eventually found this.

Again, it's a bespoke piece but this time I used my dad's wedding ring and an American ring size conversion chart to get the correct size made. I deliberated for ages over whether to get it as all silver but I think the gold is far more impressive. It should arrive in the next few days despite the fact it was made in Arizona and I was told to expect a 6 week waiting time but it's made and on its way right now only two weeks later.