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.
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