Na na na na, na na na na, hey-ey-ey, goodbye

I should know better than to start any post on here saying that nothing much is happening. Today, too much happened and not a great deal of it was much fun.

I was at the Beatson Oncology Centre for my monthly going over and Immunoglobulin (immune booster) transfusion. My consultation with the doctor went fine and I carried on just as usual to the day care unit where I was to get the transfusion. As well as that though I was to get the PEG tube (the tube that goes into my stomach to feed me liquid food overnight) replaced. Mine had been in a couple of months shy of three years even though they usually only stay in for two. Mine was still working perfectly so none of the dieticians or nurses saw fit to remove it as long as I could still rotate it and push / pull it at its entry site. I've still been able to do that so the only reason it was being replaced was because the tubing itself was discolouring from prolonged use and, due to having to cut it every time the end of it needs replaced, it was actually getting quite short. Now when it was inserted it was done endoscopically with a surgeon placing it into my stomach before puncturing just above my belly button and into my stomach and pulling the correct end of the tube out. It was secured by what they call a mushroom fitting to stop it coming out. This is where the problem lies. Even though I can still rotate the tubing on it's axis and move the tubing in and out the mushroom fitting which should, with a certain level of brute force and ignorance, be able to compress and come through the hole leaving a space for a replacement was steadfastly refusing to co-operate. Both nurses had a decent go at it but it was simply too painful to carry on. Without wishing to blow my own trumpet I have, according to many, many doctors at least, got a very impressive pain threshold. I've had loads of things done over the years where I haven't flinched regardless of what they've thrown at me so I feel I have an air of authority when it comes to pain, but this was a mixture of pain and outright discomfort that wasn't worth pushing (or actually pulling) any further. So now, joy of joys, I have to get it replaced the way they put the fecking thing in in the first place, with an endoscopy tube down my throat. I can get it done at a day surgery and it's not really that big a deal as it'll just be local anaesthetic and sedation for it but I'd still rather it have just came out easily today like they promised.

After they had given up on that the day unit nurses then took turns at using me as a pin cushion. It took three separate nurses 4 attempts to find a vein that they could use, and that was after placing my hands in a bowl of hot water and trying to heat them up with a small electric blanket and all the tricks they try to get your veins to rise to prominence. All through the last dozen years or so I've always had great veins for either getting blood from or for pumping drugs into but the first stop veins that have always been so useful have had their day. They've survived a lot longer than in a lot of patients so it is pretty much amazing that it took until now before they started to fail but it's still a real pain that they're gone. Each time a nurse tried to use one of those veins it looked good and then it just collapsed - a sure sign that they've just been used too often. So like a junkie we are now looking for less obvious veins to use and eventually they found one in my inner arm that was capable of holding a cannula in place so they could feed me my immunoglobulin goodness.

One nice aspect to my day there though was getting to see my old nurse from when I was admitted for the Bone Marrow Transplant all those years ago. Collette was in fact the nurse who shaved my head when my hair started falling out after my radio and chemotherapy. She now works in the apheresis unit which I rarely have to ever venture near so I only ever see her in passing but she came over for quite a long chat today. I was filling her in on where we are in the pursuit of new breathing gear for me and she was making me insanely jealous with her chat of leaving to go to Cuba on holiday tonight. It really was lovely catching up with her. She caught me a little off guard when she commented on how much I had, and still have, to go through and how I've dealt with it all in such a wonderful way. When my friends tell me things like that I tend to brush it off and tell them they'd be the same if it happened to them, but this is a nurse who has seen hundreds of patients like me and all their responses and she said that I have handled the shitty hand that I've been dealt with more grace and patience than pretty much any patient she's ever had to deal with. Allied to the testaments of my various consultants which echo what Collette had said I'm beginning to come around to the way of thinking that I have indeed dealt with what has been thrown my way in a relatively unique manner. 

I actually feel quite proud of myself.

You've Never Walked Alone

There's not really much going on just now but I thought I'd talk about the BBC programme Horizon from Monday night. It's almost always a great show and this was no different. It was on the topic of what are referred to in the popular press as 'superbugs'. I've never liked that title as they're just normal bacteria, evolving in a perfectly normal way to survive certain conditions imposed on them. That's just me being pedantic though. The reason I bring this up is that they are the things that really terrify me. They are bacterial infections that don't respond to commonly used antibiotics and so can kill people easily in an outbreak. Of course everyone can catch these infections but what usually happens is that people catch these resistant infections when they are in hospital for something else. I've got a greater chance of getting an infection that would require a stay in hospital so I, theoretically at least, have a greater chance of exposure to a drug resistant strain. Now I haven't been hospitalised for an infection for three years now so it's not that big a deal but this Horizon programme brought it into sharp focus just what a reality it is that we have misused the antibiotics we do have at our disposal. People demanding them from GP's, or in some countries just being able to buy them over the counter, for things that they have no efficacy for is a big issue but the widespread use of them in the food industry to allow animals to live in very close quarters to each other without infection spreading is also a massive issue.

The only other thing that's going on just now is that I've become a neurotic mess. Where I told you previously being put on to the active transplant list had given me a solace after years of fretting as to whether I would even be allowed on the list, I have now graduated to jumping every single time either the house phone or my mobile phone rings, wondering whether that's the call that will send me down for the transplant. I'm sure I will calm down over these next few weeks and that it will be when I am least expecting it that the call actually comes.

I've been deeply affected today by the news of the independent panel's findings on Hillsborough. I watched it all pan out on live television at the time and went to the tribute game that Celtic played against Liverpool a few weeks after it and stood with my family, arms interlocked with fans who had travelled up to Glasgow for the day all crying our eyes out. I was living in Liverpool when the 20th anniversary of the event came around and because I lived just round the corner from Anfield I walked up to the stadium and found myself amongst a massive number of fans of many clubs (and none) and found myself chatting to strangers from all over the country who felt they 'just had to be there'. Again there were streams of tears. The scenes in the front of St George's Hall in Liverpool today just set me going again. Now these people who have waited for 23 years for justice have a little consolation that their truth has finally come out. I have a tattoo on my wrist that says Quis custodiet ipsos custodes, which roughly translates as Who Watches the Watchmen? It is entirely appropriate to consider that very question today when our police force will fabricate stories to cover their own backs and nearly get away with it. The answer to that age old question is that it is up to us to keep the 'Watchmen' honest and if it weren't for the tenacity of the families of the deceased they might well have got away with it too. Now that the independent panel has ruled that the police and emergency services not only failed in their jobs but tried to cover up their failings, the findings of the previous inquest have to be readdressed. It is the very least the people deserve.