TEMPORARY RESPITE, BUT LOOMING CLOUDS

I had a scan last week and a treatment review. These are always anxiety-provoking, but I knew that the possible outcomes were: that the chemo regimen was working (even if that meant just holding things stable) and would be continued; or that it wasn't working and they'd either try different drugs, or - worst case scenario - say there was nothing more they could do. My sister Belinda came with me as usual - for moral support, to keep track of what's said, and to ask pertinent questions when I feel overwhelmed (it's also invaluable being able to dissect it afterwards and debrief from any emotional fall-out). Pleasingly, I've been feeling much better during the third cycle than I did during the first two (much less gastric discomfort, finding appetite and eating a lot easier, and having more energy), so despite the usual nerves I was feeling quite optimistic overall about the results of the scan. 

So I was devastated to hear that there's been further growth in most areas of the liver, and while it isn't a huge amount, the doctor we saw told us that it indicates that the chemo isn't working and should be discontinued. She reiterated what I was told last summer, and back in November: that there aren't any further chemo drugs indicated for my condition and that I would be discharged from care at the Marsden. Remarkably, she was completely matter-of-fact about this and didn't seem to have any awareness of the impact of this news - extraordinary when you consider that this is perhaps one of the worst things you could ever be told by a doctor ("you have an incurable condition, it's getting worse, the treatment isn't working, and there's nothing more we can do for you"). She mentioned that she would of course discuss it with the consultant, who has the ultimate decision-making power on all clinical matters, and seemed a bit surprised when Belinda asked whether we could speak to him ourselves.

But she did arrange it, and presently we saw the man himself. I'm so glad we did, because he listened to us, considered the matter in some detail, and agreed that since the growth isn't huge there is a case to be made for continuing with treatment a bit longer, since it may be that the chemo is slowing down the rate of increase. He also took into account the fact that I'm tolerating the chemo OK at the moment (if I was experiencing a lot of problems with it, given the additional toxicity of more cycles he would advise against carrying on when there isn't clear evidence of benefit). The upshot was that I'm to have a further four cycles of this regimen (eight weeks) and then another scan and review.

I'm extremely relieved - it's interesting how the chemo which I've so hated suddenly became much more appealing when I was faced with losing it! - and, just as importantly, I feel listened to and part of the decision which has been reached, in contrast to previous reviews when I've simply been presented with what the team have decided in my absence. I was impressed with the consultant's obvious expertise and experience, and feel reassured and in safe hands - which is so important. (It's also rather shocking to think that if we hadn't insisted to speaking to him ourselves, it's very likely he would simply have rubber-stamped the usual procedure - to stop treatment when scans show deterioration - and I'd have presumably been discharged without further discussion. It certainly seems that those who shout loudest get better care!)

However, the downside is that the consultant confirmed what the other doctors had said: that after this regimen there are no other drugs they'll offer me. There are dozens of different drugs out there, and I'd assumed that, even if there isn't research data available on their effect on cancer of unknown primary, they would try out a fair number of options experimentally. This turns out not to be the case for me: I've now had the two different recommended regimens at the Marsden, and there are no other drugs to be tried once I finish this regimen.

So although for the next couple of months things will continue as before, with chemo every other week, I'm now starkly confronted with the fact that pretty soon there will be nothing more the Marsden can do for me. I guess I'd always known that there was likely to come a point when I reached the end of the road with what conventional medicine could offer, but I certainly hadn't expected to be reaching it so soon - when I'm still relatively well and leading a fairly normal life. And to be frank I'm finding it terrifying, and horrifying, to be faced with being written off by the hospital system. Although I've had a somewhat mixed relationship with the Marsden, the prospect of losing the structure and expertise they offer is very frightening, plus the feeling of being "given up on" makes it much harder to maintain hope. Of course I may be eligible for a clinical trial, if a suitable one comes up, but with early-stage testing there's a much lower probability of treatments being effective than with a well-established drug. So I'm finding it pretty hard to deal with, even though I've got a cushion of some weeks till I reach that point (providing I carry on tolerating the chemo OK and don't develop some side-effect which means it has to be stopped early). 

Over this weekend after getting this news I was down in Sussex with my older sister Annabel and then with my good friend Jacqie. It was great to talk it through with them, but I also appreciated spending time with their children; entering into children's mindsets leaves no space for pondering on your own problems or existential matters, and it was a huge relief to have some respite from my fears. So I had some really nice times, but in between I've felt very upset and scared of what the future holds.

Of course, there are still alternative treatments... and in Sussex this weekend I also saw the alternative doctor, who has a variety of treatments he offers to help contain cancer, such as high-dose vitamin C infusions and various supplements to help the body fight it as effectively as possible. So far what I've been having  from him is based around repairing cell damage from the chemo and supporting my immune system, but he confirmed that we can try other things, which is reassuring. There are also all kinds of wackier treatments out there, which I'll certainly be researching again - when there was a well-researched medical option available to me I discounted most of them, but when there no longer is then I reckon I've not got much to lose by trying one or more. I could also consider going back to the clinic in Germany - almost everyone I met there had been written off by their oncologists back home, but many did very well on Dr Herzog's protocols. One of the nice things about the alternative doctor, like the German clinic, is meeting other patients there who don't just take the medical view as gospel and who take their treatment into their own hands, and I found it comforting and supportive to remember that there are many other people in similar situations to me who are definitely not giving up. I know that alternative approaches, by definition, are relatively unproven, but I can't imagine meekly going home and simply waiting till I deteriorate and die without trying anything and everything which might help. 

So stopping treatment at the Marsden certainly doesn't mean stopping fighting, and I've no intention of doing that. But, for the record, right now I feel pretty knocked back and vulnerable. I was due to have chemo this week but my blood tests today showed that my platelets (involved in blood clotting) are too low, so it's been postponed a week to give them time to recover. In some ways it's nice not having to have the drugs, but it's unsettling knowing that my body's already struggling to cope. My plan is to rest as much as possible and eat well, and I guess just take things a week at a time.

I realise this post is not what you'll have been hoping to read, and it's been difficult to write as well. In one way, things haven't really changed - yes there's been some more growth, but the tumours have been growing since last spring or early summer, so it's not really surprising that that's continued; and I'm carrying on with treatment for now - but in another way the shift feels huge, that what was an abstract possibility (no more medical intervention) is now an actual prospect in the pretty near future. So it requires a new level of processing and adjustment, and having to prepare for facing up to entering a new phase, yet without giving up hope. Not easy at all.