It's taken me a few days to get my head around what I think of last Thursday's trip to the clinic at the Beatson Oncology Centre. It's my 'home' clinic, if you will and the first place I call when there's something wrong. It's completely random which doctor you'll get as the docs will just take the file from the top of a pile but this week I got the boss, who has been looking after me for thirteen and a half years now. Those with an astonishing memory of my case may remember me telling of how when my case first got referred to Glasgow from Cardiff I had a half hour consultation with Anne whereupon she told me on eight separate occasions about how the treatment I had opted for (Bone Marrow Transplant) could kill me. She is nothing if not frank about the topic at hand and I've always been extremely thankful for her forthright approach to patient relations.
This Thursday as I walked in we exchanged pleasantries and I threw a line in about how there's much more of me than since she saw me last, to which she replied she was thinking of a polite way of saying the self same thing without sounding like she was calling me fat. We concluded that my being a little overweight but steady with it was no mean feat and I should just continue along those lines unless anything changes. It was then she kind of floored me. She said "It's actually great to see there being so much of you because there was a time not so long ago when there was nothing to you (41kg fact fans) and being honest I wasn't convinced you were going to make it. None of us were. You were just too poorly from constantly fighting infection after infection."
It was at this point that I interjected with my standard line about how everybody would be the same under the same circumstances. You just keep on going knowing that tomorrow it'll be better. You just do.
She then said "Don't kid yourself on Paul, you're far from being a normal patient. A normal patient would have died years ago after what you've been through. You are genuinely one of a kind, and not just from a medical point of view with the BMT and the need for new lungs, but with the manner you have handled it. You're a very special patient."
As I've said I tend to rail against this sort of chat, even when it comes from my best friends who appear to be of the opinion that come the nuclear holocaust it will be me and the cockroaches left, but when a consultant of some twenty years experience in the field tells you that you are indeed a bit special you begin to take a bit of notice and even a wee bit of pride. Pride, of course, comes before a fall and I had barely given myself the opportunity to revel in my stature of super patient before my inquisitive nature got the better of me in the consultation. I mentioned to Anne that a guy Patrick I know from my time at Glasgow Uni is doing some amazing research work on the more resilient forms of Chronic Myeloid Leukaemia (CML), the type that I had. She told me that in her field CML is regarded as a bit of an outsider as it has a pathology as a disease that is quite unlike any other. It is caused by a very specific genetic mutation (the Philadelphia chromosome). This makes it very special and gives much greater scope for a targeted treatment which minimises side effects of the drugs. This is a good thing, clearly.
I am well aware of how lucky I was to be born in a time when there was any treatment available for CML, brutal though it was. It was still a cure and it's not every form of the disease that can claim to have that available. Back then the drug Gleevec was still in its infancy and the analogues of it weren't even thought of yet but such has been their success now that giving people a BMT is very much a third or fourth option for treatment. I mused on these pages a while back about how I sometimes feel a bit bitter that the side effects of the radiotherapy led to my current position on the lung transplant list but I still think that we made the right choice back in 2001 with the information we had at hand at the time. I have to remember that or bitterness will consume me. Yes, if I had taken the course of being placed on the trial for Gleevec I might have gone on to lead a perfectly healthy life but there simply wasn't enough data at the time to suggest that it was the right course of action. The new generation of drugs based on the Gleevec starting point are proving to be even more effective and with fewer side effects and phrases like 'complete molecular remission' are being bandied about. This means there is no trace of the disease in the body and in fact there is talk of even conducting a trial where they take people off these drugs to see if the drugs have indeed proven to be a cure. I'll admit I've found that hard to handle over the last few days. Not even the most eternal optimist could have foreseen that such a silver bullet treatment would have been found and that there could be a cure that doesn't nearly destroy you in the process. That said, what if I had taken the Gleevec route and it hadn't worked for me and I had a resistant form of CML (the type Patrick is working on) then I would have been sicker than the perfectly fit 22 year old that I was and the BMT would have been much harder. You can't spend too much of your time thinking that way. There's nothing wrong with musing on your misfortunes but dwelling on them is counter-productive.
I have spoken to a few close friends and they're wondering why Anne told me about all of this in the first place as they can see why it may be upsetting but that's simply the relationship we have. She's never bullshitted me, not even from the beginning, so she's not going to start now. It was only upon my asking about it that I got the whole story and now I've had a few days to digest it I'm glad I did. I'm especially glad for those people who are avoiding the BMT (only doing 3 or 4 a year now compared to about 2 a month when I was done). This is what research into Cancer is meant to do so I can't get annoyed when it comes up with results that just didn't suit my timescale.
After the consultation I went for my monthly transfusion of immunoglobulins and it's getting harder to find veins that won't just collapse. It was only on the third attempt that we got one this time and even then the nurse admitted it was more luck than good guidance as the vein wriggled a little just as she pierced it. They've just been abused over the years so instead of using the back of my hand we are going to just try and find useful veins further up my arm to use.It is these immunoglobulins that I reckon have kept me out of hospital as much as the extra weight and general good health. They provide the immune system with a hell of a boost so I've just been fighting the wee infections away without much bother really and nothing really big has come my way in a long while. So many rotations of doctors have passed now since my last admission that none of the ward doctors actually know me, except by name and, it turns out, reputation. Long may it last.
