A YEAR OF CLINIC VISITS (AND MORE UPS AND DOWNS)

It's now a year since my first visit to the clinic in Germany. Dr Herzog never gave me a definite timescale or promised a time when I'd no longer need to come, and I've been in amazingly good health since starting treatment here, given the degree of disease in my liver. However between my last visit in May and this one I had some abdominal discomfort – never terribly bad, but lasting for 5 or 6 weeks – and my alternative practitioners at home thought it could be caused by a build-up of toxicity of chemotherapy. Chemo drugs have a long half-life, which means they can take months or even years to break down completely, and although I’m now on a low dose at long intervals, I’ve still had chemo in my body continuously since December 2010, so this seemed very plausible. They suggested I consider reducing the frequency of coming to Germany, and looking into other options.

So I researched laser therapies and radiotherapy treatments (as well as checking out yet more of the numerous "wonder treatments" that pop up all over the internet).

Although it felt a bit unsettling to contemplate losing the structure of coming to the clinic, it was also exciting to wonder whether there might be an alternative, and the possibility of a change or shake-up to my rather constricted routine of the past year. At the same time, I was also grappling with a fear that the discomfort I was experiencing might mean cancer was spreading into my intestines. So it was quite a stressful period running up to coming back here.

The good news is that there's no sign that the inflammation in my abdomen is linked to disease progression: Dr Herzog reckons it was most likely to be caused by some of the chemo drugs getting into the bloodstream supplying the intestines (which is very close to the main tumour area in my liver). He doesn’t think that chemo toxicity is likely to build up in any way which would indicate stopping or reducing the treatments.

The less good news is that feedback from the scans this time show a little growth in one area, though no change in most of the liver. On scans it can be quite difficult to compare like with like, especially with irregularly-shaped tumours like mine, so I'm trying not to react too much yet: I'll give a copy of the scan to the Royal Marsden and ask them to provide more detailed feedback and a comparison with the scan in January (which is the last one which used contrast dye). I'll also keep monitoring my blood counts and inform Dr Herzog if anything seems to be changing. One of the biggest challenges is that scans are always subject to different interpretations: Professor Vogl (the surgeon in Frankfurt) described the results as showing "no significant growth", but of course the Marsden's view of what's significant may be different. So although I don't want to panic, I don't feel comfortable trying to reassure myself that everything's fine - it's a tricky balance to strike.

Confusingly, in spite of the possible growth, overall both doctors are still very pleased with how well I’m doing – they call it “a small miracle” that things have remained basically stable for a year (which is hugely encouraging, but at the same time a bit scary that it's so unusual). However they were both adamant that we can’t reduce the frequency any further: the recommended interval is every 4 weeks, so they’re not prepared to risk leaving it any longer than 8 weeks between treatments, especially if there's growth (and nor am I).

So the plan is to come back in 2 months, and if all's still the same, do another chemoembolisation. Neither Dr Herzog nor Professor Vogl recommend laser treatment or radiotherapy for me at the moment - because of the size, shape and position of my tumours, and because of the risks of damage to healthy liver tissue which those procedures carry - so they would prefer to continue with chemoembolisation, the least invasive and safest treatment. However, if things deteriorated they would consider all options.

So it's felt a bit of a roller-coaster again - initially wondering whether the chemo was becoming unviable and looking into another treatment structure; then the disappointment of hearing that other treatments aren't appropriate for me and  trying to resign myself to ongoing, indefinite clinic visits (Dr Herzog has always told me to view my cancer as a chronic condition, which makes sense, but it's still hard to accept the limitations it involves); then finally hearing about this possible deterioration and (of course) perversely longing for things to be as they were before - and having to stop myself going into catastrophe mode. Added to all this I had 24 hours of diarrhoea after this chemoembolisation, which left me feeling physically washed out and sorry for myself, so all in all I had a pretty low couple of days.

If reading this leaves you confused as to what this all means - yes, that's pretty much where I'm at too! It's just not clear yet whether this is a minor blip; a discrepancy in measurement; a sign we need to try different chemo drugs; a sign that chemoembolisation is no longer effective; or the beginning of the end (if my inner doom-mongerer is to be believed - though to be honest I've stopped listening to it now, as it just gets in the way). Basically, we don't know yet what will happen, so it's a case of gathering more information / opinions and seeing what happens over time, and making any decisions once there's something more, or different, to base them on. (As it's been throughout, in fact.)

Yet despite the uncertainty I do know I’m extremely lucky to have no significant symptoms, no pain, and a treatment which has been working so well. The majority of people I've met in the clinic are having a harder time than me, so I know I need to appreciate the ways in which I'm lucky, to be grateful for the good parts of the news, and to make the best of things. But definitely some times that's easier than others!