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.
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