UNCERTAIN TIMES

The last couple of months, since I came out of hospital, haven't been easy. It's been a busy and stressful period, with a political crisis in the orchestra I play in (which has taken a great deal of time and emotional energy to deal with), and my energy (and sometimes my mood) have been pretty low at times. I've continued to struggle on the chemo: towards the end of the second cycle I had to stop taking the chemo tablets for 24 hours because of stomach pains, and in the third cycle those problems returned within a week, along with an inflamed gut and very little appetite. Again I was advised to stop taking the tablets (supposed to be for 14 days in each 21-day cycle), but after 48 hours things weren't much better so I was called in to the hospital's assessment unit. 

After 5 hours of blood tests, X-rays, more blood tests and various consultations it was decided that I shouldn't finish that course of chemo, and would be reviewed the following week. I was pretty anaemic and my platelet count was very low (platelets are involved in blood clotting, so at low levels you're at risk of haemorrhage), and at one point I was afraid they'd want to admit me, but fortunately I was spared that. I was finding day-to-day things hard, but it was manageable. In fact the following day I played in the orchestral concert - a long day of rehearsing and performing, and a demanding programme with some pressure on me as the leader - but in fact it was an extremely uplifting and energising event. Several friends, one of my sisters and my cousin all came to support me, and I felt an exhilaration and satisfaction I haven't experienced for a long time: after weeks of feeling below par and preoccupied by my limited health, performing and celebrating afterwards felt like coming back to life.

However, at the review the following week the doctor expressed concern that my symptoms might be caused by disease progression into the abdomen rather than side-effects, and she requested an urgent scan before the next cycle of chemo. This hadn't occurred to me, and shook me up considerably. Scans are always a big deal, and it was hard not having much chance to prepare myself. I got the results yesterday (my sister Belinda with me for moral support): the good news is that there's no sign the cancer's spread to any other organs, but the bad news is that the existing liver tumours have grown a bit and there are two new ones.

I'd expected there to be some deterioration, as my last scan was done in Germany in early July, and I didn't start chemo till the beginning of September; given that the cancer had been growing before July it was only logical that it would have carried on during the break between treatments. What the scan can't show is whether the growth happened before I started this treatment, or whether it's happened more recently, or continued since September, in spite of it. But the feedback is sufficient to cast doubt on whether the chemo is having any beneficial effect, and therefore whether it's worth continuing with.

The doctor is going to refer this to her team and to the consultant, and I'll have yet another appointment at the end of this week (my fifth in a fortnight). So I'm in a limbo of not knowing yet whether I'll continue on with the current drugs a bit longer or not. The tablets I'm taking can be given intravenously, which might be easier on my stomach, but the disadvantage is that it has to be given over 48 hours: you don't have to stay in hospital but the IV line stays in and you have to carry around a pump dispensing it. Not very nice, but worth it if there's a chance of some positive benefit.

What's more difficult to cope with is that the doctor warned me that if these drugs aren't working there aren't any obvious further treatment options the Marsden can offer. If that's the case, they'd refer me to their research unit in Surrey to see if there are any clinical trials of new drugs which I might be eligible for. These would be very early-stage experimental drugs, and to be honest the thought of that being my only medical option fills me with dread - rightly or wrongly, I see clinical trials as the last resort. I remember back in August I was bracing myself to hear that there were no further treatments available, but since I've been back on chemo I'd slipped back into trusting the doctors and believing they'll always have some answers or suggestions. So even though I don't know for sure whether this will be what's presented to me, facing again the possibility that I've reached the end of the road treatments-wise is very scary and unsettling.

I wasn't sure whether to update the blog while there's no clear answer or plan - I don't want to worry all of you when it's possible that there might be a reasonably straightforward solution - but on the other hand I wanted to share, and feel supported in, this horrible anxious state. Also, as you can imagine, this isn't easy or pleasant to explain to people repeatedly, so saying it here might bypass having to say it so many times in person. I'll still have to update the various practitioners I see (acupuncturist, homeopath, healer, massage therapist etc.) so the more people in my social circle who can find out here, the better, even if it's not the most personal way to let people know. 

I've been up and down as I try to get my head around this. I've been going over and over the possible options, worrying about the potential problems with all of them, trying to work out what might be best, yet also trying to accept that I might not have much choice in this. I'm swinging between fear, going into planning mode (e.g. researching alternative treatments), sadness and disappointment, convincing myself I can still make choices and have some control over things, wondering whether I should be trying to make peace with the situation and not fight against it, reading up on other drugs I want them to consider trying and preparing arguments for them not to give up on me yet, distracting myself with other things, and then starting all over again. In some ways the uncertainty is the hardest thing (for instance, even at the practical level I find it very stressful knowing I might have to cancel things booked for next week, but I can't make plans till I've seen the consultant), but at the same time the uncertainty does provide a very welcome breathing space before I have to deal with whatever the next phase of my life might bring. I'll let you all know when I have more news.