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! 

MEDICAL NITTY-GRITTY

In this visit I had my ninth chemoembolisation. I realise I haven’t gone into much detail about this procedure so I thought I’d explain what it involves – I promise it's not too graphic!

In the morning a car from the clinic takes me the hour or so to Frankfurt’s University Hospital. I have to fast from the night before, so I try to avoid the breakfast room! When I arrive I pay for the procedure, then take the receipt to the Radiology reception and check in (in my fumbling German). 

I think a number of people are all booked for each timeslot so there can be a wait of up to an hour before I’m called and taken to a little cubicle to change into one of those horrible hospital gowns that leave your dignity entirely unprotected. A doctor comes round and checks for any changes to medical conditions, allergies or contraindications, and I sign a consent form. Then I wait to be called for an MRI scan, which, although not detailed enough to compare progress from one time to another, is what the Professor uses to plan his line of attack later.

I then wait again in the cubicle till I’m taken to the operating theatre, where I get hooked up to a drip containing saline (for hydration) and anti-sickness medication. My groin is liberally sprayed with cold (and bright orange) antiseptic, and a kind of surgical-blanket-with-a-hole-in-it is positioned over me so that just the inside top of my thigh is exposed (no space for modesty in this game!)

There can be quite a delay at this point, as there are at least 2 operating theatres on the go at any time, with Professor Vogl going between them (he carries out up to 18 of these procedures a day, impressively). Once he arrives it’s an efficient 10-15 minute process: he anaesthetises the top of my leg and inserts a canula into my femoral artery in the groin (it still hurts though!). With a scanning machine above me projecting my insides onto an LCD screen beside the table, he feeds 10 or 15 cm of thin tubing through the femoral, and then the hepatic, artery until it reaches the main tumour mass in the liver. A mixture of the three chemo drugs is injected in, along with steroids (these make me flushed and hot for a day or two afterwards and disrupt my sleep, but they prevent an allergic reaction to the drugs which can be fatal, so they’re non-negotiable!) I clearly feel the drugs going in – it’s a very weird sensation. Sometimes they burn or create momentary nausea, but it’s not too bad. The tubing is all removed, the wound is cauterised and dressed, and I’m transferred onto a bed.

I then have to lie still for 3-4 hours to prevent any bleeding (which, because an artery has been punctured, would be very serious). To be honest I generally feel pretty wiped out and it’s no hardship, except for getting stiff lying in the same position. As I’m flat on my back I can’t read, so I listen to music on my iPod. For some reason classical music is all I want – at the risk of sounding utterly pretentious, it feels like the interweaving of the different instruments, all responding to and balancing with each other to produce something greater than the sum of their parts, works as a kind of metaphor for coordination and healing in my body, as though aligning each organ and system into harmony with the others. Whether that’s the case or not, I find pop music a bit too jarring but classical pieces absorbing and soothing. Current favourites are Mozart’s Sinfonia Concertante, Schubert’s String Quintet in C, and Mendelssohn’s Octet.

After an hour I’m allowed to eat, and I nibble gingerly at whatever I’ve brought with me  – usually a protein bar from a health food shop or some almonds (the hospital doesn't provide any food, though once or twice I've been offered a packet of sweet biscuits). At the end of the 3 or 4 hours a nurse helps me up and I get dressed again (feeling a bit sore and creaky), and go back to the waiting room till I’m called for the CT scan. This is just to check that the embolisation material (which temporarily blocks the blood vessels in order to hold the chemo drugs in place a bit longer) has dispersed as it should - unless I specifically request it they don't use contrast dye, so the scans aren't very detailed in terms of charting the state of the disease. I do ask for a more detailed scan every few months, but it has to be specially authorised and takes quite a bit longer, so it's not ideal to do every time. 

Once the scan's over I wait to have a quick debrief with the Professor; then I wait for his secretary to type up a discharge summary and make a copy of the scans. If all’s gone to plan a driver from the clinic will by now have arrived to take me back – if not, there’s yet more waiting around.

So as you can see it’s a long day - typically leaving the clinic at around 10 a.m. and getting back between 7 and 8 p.m. I have some dinner at the clinic (I ask them in advance to keep some back for me in case I miss the official meal time) and then make my way back to the guesthouse and go straight to bed. By the next morning I generally feel lots better, with a reasonable appetite. After each treatment I have infusions (drips) of various remedies, to help the body detox from the chemo, and these seem to help a lot in recovering quickly. 

After so many of these procedures I’m getting better at dealing with the hanging around – burying myself in a book and avoiding looking at the time too often – but of course it’s pretty tiring, even without the impact of the intervention. I think I’ve tended to minimise it to people at home, describing it as "injecting chemo into the liver" - which is technically accurate, but definitely not the full story! It’s not an awful experience (in the grand scheme of unpleasant medical / surgical probings), but I’m always relieved when it’s over.

TWO'S COMPANY

July, and yet another stay in Bad Salzhausen... The start of this visit was made much more pleasant by having my friend Mischa with me for the first couple of days. It was great having company to go to cafes, for walks, and into nearby Nidda, as well as sitting over breakfast chatting – at times it felt like being on holiday! 

Mischa in Nidda

Bridge and waterwheel in Nidda

However the main thing I valued was having someone see and experience, and understand, what it’s like here – the ups and downs, the frustrations, the camaraderie, the unique kinds of conversations that take place. Of course I’ve talked about clinic life to lots of people, but describing a place is never the same as experiencing it. (Another friend, Sharon, came to accompany me home from my first visit here, but unfortunately wasn't able to stay long; Jacqie came with me on my reconnaissance visit so knows what it all looks like; but Mischa is the first to get much of a feel for the rhythm of clinic life.) One thing she commented on was the amount of effort which goes into organising my care here - as an out-patient you have to chase up everything, from blood tests to infusions to making appointments to arranging for prescriptions of supplements, not to mention booking transport and guesthouse. So it was nice to have that acknowledged, and to realise that it’s no wonder I find it hard work at times!

In addition I found it extremely validating to have someone from home “bridge” these two worlds I inhabit. At home, because I look and seem fine, my friendships and relationships have mostly remained quite similar to how they’ve always been – we meet up, go for coffee or a meal, talk about what we’ve each been doing – and although of course I talk about my treatments, my dilemmas about the multitude of contradictory advice out there, and how I’m feeling, I’m still in the role of someone who’s “well” and (although no longer working) living a fairly “normal” life. I don’t in any way want to think of myself as “ill” (and I work strenuously to avoid taking up that role, including not asking for help), but when I’m at the clinic I  am of course a patient, and undergoing medical treatments, and am surrounded by people who, to varying degrees, are unwell, and our common ground is our unwellness. (The good and bad parts of being at the clinic both stem from being connected to other people through unwellness…)

And although I don’t want people at home to think of me as “ill”, at the same time it’s been quite strange having such a big part of my life somewhat invisible, out of sight here in Germany. So sharing that with someone from my London life felt very positive, and left me feeling quite buoyed up. 

 Out for a drink in Bad Salzhausen (alcohol-free beer is nearly as good as the real thing!)