I saw Alison today for the first time since the noggin episode, armed with a list of questions which have, largely, been answered in a way which makes me think that, actually, all may not be as hopeless as it felt over the weekend (incidentally, sitting in an old man’s pub on your own, crying into a pint or three is not cool. I wouldn’t recommend it).
There’s still a fair amount I’m not really sure about but the main points to note are:
– I start Eribulin as planned on Wednesday, assuming Mr Kitchen is happy with how my scar is healing (the staples came out on Monday – there were pliers, there was blood and it looks a bit like a shark bite but other than that, it’s all OK). I’ll have 3 cycles (2 weeks on, 2 weeks off, repeat x 3, so at least no ‘scanxiety’ for a while).
– For her, “alarm bells haven’t started ringing yet”; she says brain mets are more treatable than you think. She’ll discuss with Naomi whether to do any whole brain radiation therapy on top, just to mop up any cells that might be lurking but her instinct is to save that in case any problems do pop up again further down the line. My own instinct is shot to bits, I’m happy to go with hers. Her bigger concern is the lung mets, particularly in the left lung, which is starting to feel a little painful. Like there’s something heavy on my left side, round the back. Having never had any symptoms, this is a bit alarming. The difference between seeing something on a scan and actually being able to feel it – let’s just say it’s a bit odd.
– My veins have pretty much given up the ghost so they’re thinking about trying a port again. Given the problem I had with the last one (blood clot to the jugular, anyone?) I have mixed feelings about this. But I am also very keen to get this drug in me anyway I can so again, I’ll go with what they say. It’s really important to have confidence in your team and even though this shit is pretty bewildering, the one thing that still holds steadfast is my trust in Alison. Having initially had an oncologist I was really unhappy with, I’m lucky to have her.
– Despite saying I didn’t want to hear THE ANSWER to THE QUESTION, I asked it anyway. I thought long and hard about this, and I was ready. This constant limbo is the hardest part of all. Will it, won’t it? What can I plan, what should I be doing? And the good news is she said she couldn’t give me an answer, not at this stage. We have agreed that, if a time comes when she can, even a rough estimate, then she will. That’s not being morbid or defeatist, it’s facing facts. The fact is, and I quote her, that this thing will eventually catch up with me. But hopefully it won’t be for a long time. As my mum says, I’ve just got to make sure I’m running faster. I’ve got my trainers on, I’m ready to leg it as fast as I can, and when I can’t run any more, I have a feeling I’ll know. Anyway I might get hit by a bus before then.
So. Lots to digest but I feel like we might be back on track a bit. Eribulin is, supposedly, a very good drug. Let’s hope so as I’m really banking on it as it doesn’t sound like there is much else exciting in the pipeline. The major blow from today is that, because of the brain mets, I won’t even be eligible for most of the trials that could be round the corner which is a complete shitter. But I know I’m lucky to have been granted the funding for this drug. I’m not particularly political but whoever established the Cancer Drugs Fund gets a doffed cap from me – without it, I’d be staring a much bleaker future in the face and perhaps I’d have AN ANSWER to THE QUESTION after all.