SOME TURBULENCE

I wasn't sure whether to write about this, but the last couple of weeks have been a bit of an emotional rollercoaster. I mentioned in the update post on 1st February that the Marsden team had looked at my January scans, and were pleased with my progress. In fact what they told me was that although there's still a sizeable mass (and a few smaller masses) in my liver, they thought that the tissue was mainly inactive (like, for example, scar tissue), because the dye used in the scan hadn't been taken up by the cells in the way you'd see if they were highly active (ie metabolising). Their opinion was that I shouldn't have any more chemoembolisations, and just have a follow-up scan in 3 months time.


It sounded like amazingly good news, but I couldn't quite understand it, since although there's been a small improvement over the last 6 months, it's what's described as "stable disease" (ie less than 25% change). For that reason I didn't fully let myself believe it, nor did I go into detail on the blog, waiting till I got more information before I broadcast it. (However, I did feel anxious about possibly losing the reassuring structure and support of the clinic, and worried that I wasn't appropriately thrilled, and I agonised about whether I was repressing my emotions, or deep down didn't really want to be better - you'd be surprised how much self-flagellation supposedly good news can bring!) However, I then got the reports from the Marsden radiologist, and those also stated "stable disease". So I rang the nurse specialist to find out why, in that case, the team had concluded that I shouldn't have any more treatment, and it turned out that - far from thinking that there's nothing left to treat - doing any more than 3 chemoebolisations hasn't been definitively proved to be of benefit, so they don't think there's any point in me having more treatment. Rather a difference!


Of course I discussed it with both Dr Herzog and Professor Vogl when I got here, and they both disagreed with the Marsden's view, saying that cells can appear dormant at a given timepoint, but it's dangerous to jump to the conclusion that they're dead or harmless. Dr Herzog had no doubt that if we stopped treating, the cancer would spread, and become harder to treat - he makes decisions on how cancer cells behave over time, not how they look on a scan. That makes sense to me, and although it's a more cautious interpretation of the scan, I much prefer that to the "Russian roulette" approach of stopping treatment just to see how whether / how quickly it grows back. I also trusted Dr Herzog's opinion because he's seen me regularly and has thought (and discussed with me) a lot about how the treatment's going, whereas there's no-one at the Marsden who's really got to know me so their conclusions are all based on technical data, and it doesn't really inspire confidence that they're looking at the whole picture (especially as they've also made a couple of fairly basic mistakes in previous reports, such as the date of my diagnosis and how many treatments I've had). So I'm following Dr Herzog's advice and we're continuing with the chemoembolisations - though we're leaving a 6-week gap this time to see if it remains stable, and if it does, gradually increase the time interval if we can. 


So all's still as before, nothing's changed, and in this game that's a very good result. But as you can imagine, I've been pretty gutted, having had that hope dangled in front of me that maybe it was going better than that. I was fairly angry with the Marsden at first, for recommending me to stop a treatment that's working when they've got nothing to offer me themselves, and I felt very mucked around emotionally. But I don't think they've done anything unprofessional - I used to think that scans are like photographs, a clear picture which you can accurately measure and quantify, but although some may be like that, mine definitely aren't, so it's all about the subjective (and highly skilled) art of interpretation. And the Marsden are guided by the research evidence from gold standard trials, so naturally their view will differ from doctors working pragmatically and experimentally and relying on their clinical judgement and intuition. Still, even though I didn't really fully believe it, of course I hoped, and it's pretty devastating to come back from that.


But come back from it I must, and I'm trying hard to look on the bright side - I'm so lucky to have a treatment which holds it stable, and although of course I want it miraculously cured, I also know that once cancer's metastasised it's all about stopping it progressing, rather than expecting to cure it. I'm extremely lucky that - for now - it's stable at a point where my day-to-day health and lifestyle isn't significantly limited by it. So that's what I'm aiming to feel grateful for: although I haven't let go of the hope for a miracle, I don't want it to mean I miss out on appreciating what's good about how things actually are right now. Plus, whatever scans look like, no-one can predict exactly what'll happen in the future, so although it's hard living with the uncertainty, it's something I just have to learn to adapt to. It's been good being around other patients, who understand that challenge only too well, and I've really appreciated the support and understanding I've had from those I've confided in.


As I said, I had mixed feelings about writing such personal things so publicly, but I know that I have a tendency to present myself as sorted and positive, so I wanted to be honest about what it's like emotionally and what I've been struggling with. It's hard to know what kind of detail to go into on this blog - as there aren't many comments I don't really know what people think when they read it (or exactly who's reading it), so I hope it doesn't feel like an inappropriate "splurge".


I'll do another post about the rest of the visit in a few days' time. Till then, some photos to finish off with (don't be fooled by the lack of snow, it hasn't risen above minus 7 since I got here!)

Frosty sunrise

Sunrise over the village

Winter sun