THE MORE IT GOES (TIDDLY POM) ON GROWING...

Apologies for the flippant title of this post (and apologies to Winnie-the-Pooh for misquoting his little ditty). Perhaps I've run out of earnest ways to feed back on scan reports showing yet more of the same.

So yes, unfortunately, the latest scans showed some more growth, both in the liver and with a few more spots in the lungs. It's always devastating hearing this kind of news - like being kicked in the stomach - but for some reason this time I haven't felt very interested in dwelling on it. It's not that I'm actively trying to avoid thinking about it, or that I'm striving to "think positive": I simply seem to have bounced back fairly quickly. (I'm sure this was helped by having just come back from a few days at Findhorn in Scotland, where I'd had a number of sessions with the healer there, and we'd worked a lot on grounding me emotionally and finding ways to hold onto a sense of calm and tranquility among the rougher parts of the ride.) So, pleasingly, I've found myself more focused on the good things which came out of the consultation.

The best of these was that, without even asking, we saw the consultant. It's so much more satisfactory seeing him: it feels like a dialogue, and he's clearly very sharp and clued-up, so the conversations are far more productive than with even the best of registrars who simply pass on the consensus that the team / consultant has come to. 

More specifically, he told us (in direct contradiction to what he'd said in January) that there is another chemo drug they could use. He warned that with each successive round of chemo there are diminishing returns, so any possible improvements would be expected to be modest, but this drug can help some patients. He asked what I thought about more chemo, and I said I'd want to think about it, given that my digestive system certainly hasn't recovered from the last lot, and that my liver isn't in a good state. In fact, my instinct is that it would be disastrous right now, and I definitely don't want to go down that route at the moment if I can possibly avoid it, but it's great knowing there is another medical option available: psychologically it's so very different from having exhausted all the possibilities. Reassuringly, the consultant was reasonably relaxed about the further growth and suggested waiting a couple of months and rescanning to review things then. 

I asked whether the growth in the liver would account for my liver function tests continuing to deteriorate (at a slightly alarming rate), and he replied that it doesn't really, and that the test results are more likely to be an after-effect of the SIRT (radioembolisation) treatment in April. He mentioned that, as the procedure is becoming more widely-used, some clinicians are recommending longer periods on steroids afterwards, to counteract inflammation in the healthy cells, and he suggested a 2-month course of steroids for me. As I understand it, it's the healthy cells which aren't currently able to function properly because of the inflammation (which is part of the immune response to damaged tissue, but can be counterproductive because it makes cells swollen, like with an allergic reaction, so that they don't work as they should). So, although I don't like being on steroids, it makes perfect sense to me, and I hope that this might help stabilise my liver functioning. Whether or not I have any chemo after that, I'd certainly be in a better position to process it if my liver is able to work better.

So I'm fairly happy with the outcome: I feel that I've been listened to, included in the doctor's rationale for his recommendations, and it gives me a bit more time to do whatever I can to recover my strength and energy. You won't be surprised to hear that I've been (yet again) researching all possible options for alternative treatments which might help my immune system and gut to repair as much as possible - let alone anything which could possibly help to stabilise the growth phase - and I'll let you know if I come up with a new plan. One thing I've embarked on, after "falling off the wagon" with my restricted diet for a while, is increasing the amount of fruit and vegetables I eat - for anyone who's interested in the emerging scientific evidence on the anti-cancer properties of these food groups, see this fascinating talk: http://www.ted.com/talks/william_li.html

Meanwhile, I've realised it's quite a while since I put any photos on the blog, so here are a few, to remind me that I have been able to do some nice things during the last few months:

Day out at Sissinghurst Castle, arranged as a birthday treat by my friend Sheila,
with her gorgeous youngest son Xavier

Setting off for a ride on Wimbledon Common with my sister Belinda in May

Revisiting the beautiful countryside of mid-Wales in August

The younger generation in my favourite lake,
where we used to go as children from as far back as I remember

Lifelong family friends at the holiday home we share

JOLTINGS

One of the things I find most difficult is the collision between what sometimes feels like two completely separate worlds: the normal everyday mundane stuff, and the medical. A couple of weeks ago I spent a lovely few days in mid-Wales with old family friends, along with my sister and nephews, and although I was aware of feeling weary at times, overall I felt pretty normal. The bloating and poor appetite were better (helped by big communal meals so that I didn't have to spend time thinking about what I could face eating), but also everyone there knew about my situation so we didn't have to talk about it. I felt surrounded by caring compassionate people who have known me all my life, and that meant that we could just have normal conversations - including lots of joking and banter - and that was wonderful, really restorative. 

Then I returned to London and had my routine blood tests, and was immediately transported back into "patient" mode. My liver functioning, which had been deteriorating a bit, had declined further, and I was put on a course of steroids (the rationale being that my liver could be inflamed, possibly as a result of the radiotherapy which can disrupt blood chemistry for quite a while after treatment, and steroids reduce inflammation). My haemoglobin was also pretty low, so I had a blood transfusion at the end of last week. What with waiting for the blood tests results, waiting again for a prescription for the steroids, having to come back on another day to give a blood sample to match with the donor blood for the transfusion, and spending more than 5 hours having the transfusion itself, suddenly a large portion of my week was spent at the hospital. 

Sadly that's continued this week too: I've had bad bloating, distention and discomfort since last weekend, and follow-up blood tests showed that my liver functioning hasn't improved. The Marsden team were worried there could be some blockage and I had an urgent ultrasound scan. Urgent, by the way, means that they fitted me in the same day, but it meant waiting 3 hours for a slot and then another 2 hours before someone was free to give me the results. The waiting around is very stressful, as you don't even want to go and get a cup of tea or a sandwich in case you miss being called, and spending all day on uncomfortable plastic chairs is not great when you're in pain and feeling exhausted.

The ultrasound didn't show up anything obvious, and I'm very relieved by that, and thankful that they took it seriously and investigated, but I still don't have an explanation (or even any hypotheses from the medical team) for why my liver isn't working properly, and that's an incredibly scary position to be in: at one stage I was terrified that my liver might be about to pack up at any minute. Once again, that comes partly from the lack of continuity and communication - I very briefly saw my specialist nurse, who arranged the transfusions and set up both the ultrasound scan and a CT scan for tomorrow, but she only deals with the practical things, and the doctor she spoke to was (I think) whoever in the team happened to pick up the phone - certainly there was never any suggestion of me actually talking to a doctor in person. Later on a very junior on-call doctor told me that the ultrasound was inconclusive, but she clearly knew very little about my case, asking whether I was on chemo now and not appearing to know about the SIRT procedure in April, and that's very frustrating and doesn't really inspire confidence.

But I was conscious that alongside my worries about the blood results (why now? what's going on? what if this is the start of something serious?), I was also very upset by having my life taken over again (as it felt) by the reality of my health problems: having to drop my plans for the week to accommodate medical appointments, and needing to cancel a number of nice social things I'd been looking forward to because I felt too unwell. (I'm going back to Scotland to see the healer next week, and I've had to cancel my final session with him and change my flight home in order to be able to go to the clinic appointment for the scan results - not the end of the world, but a nuisance and extra admin all the same.) I guess it boils down to a control thing: it's felt like losing my autonomy and the illusion of being in charge of my life, and after a period without feeling defined by illness, it was a bitter blow to have to readjust again. It's tough having to put your life on hold, to relinquish whatever plans you had, to accept that the needs or crises of the body actually have total dominance over what we like to think of as our "free will".

I hope this doesn't sound as if I've got my priorities wrong: what I'm trying to convey is how I can be coasting along fairly comfortably, knowing what the week holds, doing normal things like seeing friends, going to appointments, shopping, doing admin etc, and then suddenly the cancer comes crashing abruptly in and takes over. It's also weird going back the other way and being in a "normal" social environment while trying to explain to other people what's been happening. 

So it helped enormously that my friend Catherine was with me on one of the longest Marsden days (putting all her own plans on hold to stay with me till I was allowed home, bless her), and that she witnessed something of these two slightly contradictory worlds. I guess when people see me socially it's easy to assume that I'm fairly alright, and that despite a few medical appointments I'm as in control of my destiny as anyone else - not many people see me in the enforced passive role of being a hospital patient, helpless in the face of the endless waiting of the system, and feeling like my life's been taken over. I don't like to dwell on those aspects of my existence, but it's certainly part of my reality, and one that I find very challenging, both in itself, and in the suddenness and unpredictability of switching between the two worlds.

However, the other thing which has really helped has been my alternative practitioners: once again, it's made a huge difference having people who actually know me and my history talking me through what might be going on, and having helpful suggestions about how to improve things. Both the alternative doctor and my osteopath believe I've been having an immune system overreaction to the blood transfusion, rather than a blockage or a build-up of fluid in the abdominal cavity (ascites) - which makes sense to me since I've had swollen glands and felt generally achy, as you do when your immune system is working hard - but, whether or not that's "true", having an explanation other than my google searches on end-stage liver failure has, not surprisingly, taken a lot of the fear away. In addition their treatments have eased the pain and reduced the swelling considerably. I don't mean to dismiss the expertise of the Marsden, but I'm very thankful to have a support network which means I don't have to rely solely on their somewhat patchy communication for making sense of what's going on in my body. I'm so lucky to have the money and education to make use of the different forms of care which are out there - it really makes a difference, especially in the tougher times.