Up to London to see if there are any medical trials which might be suitable. The legendary DJ Viv sends through CDs, a playlist from the party, arriving seconds before you leave, and Morrissey and Sum41 sit incongruously side by side in the car with you, curiously uplifting as you fly along.
Our appointment is at 2, we check in at 1.30, and wait. As you sit with a coffee, you realise that you don't have any hopes for today, none - the positive way to look at it is that if anything comes out it is a bonus. They call you for bloods - always, always bloods - then back to the room to wait, and wait and wait. Occasionally a nurse comes into the room, whispers - calls is too strong a word - a name and disappears again. Eventually, by the time you are hungry and dispirited, she whispers your name.
You and H follow the nurse, she takes your height and weight, then without any explanation, leaves you in another waiting room. After a while, another nurse shepherds you, again without communication beyond a sad little smile, leaves you in a hot, close examination room, disappears through an adjoining door.
Through the door, you can hear loud talk, laughter, a little party to which you are not invited. You wait, sweat a little, wait some more. Eventually, the laughter stops, and the door slowly opens to reveal two doctors. They come in, and the first one, whose name you don't catch, sits down, says, er, my boss isn't available right now, so I've come in to talk to you.
He asks you questions, examines you, listens to your chest, moves your arms around a bit. Somehow it feels perfunctory, like he is going through the motions, and at any moment you expect his next question to be - do you like arm wrestling, or, what's the capital of Kenya. Then you sit back down, he looks at you and says, we don't have any trials which would suit you. Then you talk a bit more, he says, oh, we might have something - just let me talk to Dr B.
He goes out with his quiet mate, while you sit and wait and look at the walls. Then he comes back, says something else, goes out again. Eventually he comes back with the boss, Dr B, who sits down, says, we have a couple of things which might suit you, then explains it all very quickly using words you don't understand. You don't even know how many options she has given you - 3? 4?
There is a long pause, while the three doctors look at you expectantly. You look at H, whose eyes are wide, and you think of your brother, say - right, I didn't understand a word of that. Can you go over it again, slowly. Dr B starts talking again, and you interrupt, question, say tell me that again, again. You suspect Dr B isn't used to being spoken to, cross-examined, like this. And you think, like I care - it's my body, the rest of my life, not hers.
Eventually, you think you understand what you're being offered. And frankly, the options are pretty poor. The best one seems to involve coming up to London every week for 18 weeks, every side effect known to man, nausea, hair loss, skin rashes, diarrhoea, take your pick, and about a 20% chance of it actually doing you any good. You say, well, thanks for your time - we'll go away and think about it. The first doctor says, ok, oh - can you just have a blood test before you leave. You scan his face for a little grin, expecting him any moment to say - ha ha only joking, fooled you - come join the party! But he doesn't, just hands you a little bag, starts to give you directions. You cut him off, say, thanks but, it's ok. I know the way.
Our appointment is at 2, we check in at 1.30, and wait. As you sit with a coffee, you realise that you don't have any hopes for today, none - the positive way to look at it is that if anything comes out it is a bonus. They call you for bloods - always, always bloods - then back to the room to wait, and wait and wait. Occasionally a nurse comes into the room, whispers - calls is too strong a word - a name and disappears again. Eventually, by the time you are hungry and dispirited, she whispers your name.
You and H follow the nurse, she takes your height and weight, then without any explanation, leaves you in another waiting room. After a while, another nurse shepherds you, again without communication beyond a sad little smile, leaves you in a hot, close examination room, disappears through an adjoining door.
Through the door, you can hear loud talk, laughter, a little party to which you are not invited. You wait, sweat a little, wait some more. Eventually, the laughter stops, and the door slowly opens to reveal two doctors. They come in, and the first one, whose name you don't catch, sits down, says, er, my boss isn't available right now, so I've come in to talk to you.
He asks you questions, examines you, listens to your chest, moves your arms around a bit. Somehow it feels perfunctory, like he is going through the motions, and at any moment you expect his next question to be - do you like arm wrestling, or, what's the capital of Kenya. Then you sit back down, he looks at you and says, we don't have any trials which would suit you. Then you talk a bit more, he says, oh, we might have something - just let me talk to Dr B.
He goes out with his quiet mate, while you sit and wait and look at the walls. Then he comes back, says something else, goes out again. Eventually he comes back with the boss, Dr B, who sits down, says, we have a couple of things which might suit you, then explains it all very quickly using words you don't understand. You don't even know how many options she has given you - 3? 4?
There is a long pause, while the three doctors look at you expectantly. You look at H, whose eyes are wide, and you think of your brother, say - right, I didn't understand a word of that. Can you go over it again, slowly. Dr B starts talking again, and you interrupt, question, say tell me that again, again. You suspect Dr B isn't used to being spoken to, cross-examined, like this. And you think, like I care - it's my body, the rest of my life, not hers.
Eventually, you think you understand what you're being offered. And frankly, the options are pretty poor. The best one seems to involve coming up to London every week for 18 weeks, every side effect known to man, nausea, hair loss, skin rashes, diarrhoea, take your pick, and about a 20% chance of it actually doing you any good. You say, well, thanks for your time - we'll go away and think about it. The first doctor says, ok, oh - can you just have a blood test before you leave. You scan his face for a little grin, expecting him any moment to say - ha ha only joking, fooled you - come join the party! But he doesn't, just hands you a little bag, starts to give you directions. You cut him off, say, thanks but, it's ok. I know the way.
