SECOND VISIT TO GERMANY

I'm just completing my second, 10-day, stay at the clinic. It's been a bit of a mixed experience: on my first visit there I got quite a buzz from the novelty and excitement of discovering all these new treatments and talking about cancer for the first time with other people going through it - this time hasn't been quite like that, and although in lots of ways it's been great being an "old hand", it's different from that initial enthusiasm.


Sadly, 4 people I met last time have since died, which is hard to deal with. I think it's essential not to rule out hope for better outcomes than the statistics suggest (since each person responds to treatment differently and no-one can predict exactly what will happen for you personally), but all the same, accepting that the spectacular outcomes are few and far between, and that controlling the cancer for as long as possible is an ongoing commitment, is tough to get your head around. Most patients I've talked to initially hoped, like I did, that coming to the clinic would be just a one-off visit, with no need for anything further afterwards, but in fact it's just the same as it would be with any doctor: follow-up is a longterm and continuous process. Even people who are in remission come back here for regular maintenance treatments. So I'm beginning to realise that coming here will be part of my life from now on, and adjusting myself to that.


However, there have been some really good things from this visit too. It's been much easier coming back to somewhere familiar, knowing how everything works (which takes some time at the beginning!) and already knowing the (lovely) staff. I've re-met quite a few people here from last time, and it's really nice catching up with them - they're like old friends. There's a British woman here who, we discovered, went to the same school as I did (Brighton and Hove High, albeit 20 years before me), worked for a while in the same firm of consulting engineers as my father worked for, and has nieces who used to be Brownies and remember my mother! - it's been lovely finding these connections. And I've had some really interesting, stimulating, warming and fun conversations - it might sound weird that it can be so enjoyable here, but the majority of the time that's the case.

This time I stayed in one of the clinic rooms for the first 5 days and then, after a day or two recovering from the chemo, moved out to a nearby guesthouse and had the rest of the treatment as an out-patient, which works out a bit cheaper. I spend most of the day at the clinic anyhow, so it's still just as sociable, but I quite like being able to leave the building and go somewhere different at the end of the day. (And it's nice not being woken at the crack of dawn to have your blood pressure taken every morning!)

My room at the guesthouse

View from my bathroom window over the main street

In terms of treatment, as well as the daily hyperthermia and infusions, I had a second chemoembolisation procedure last week. I tolerated it better this time - I still felt pretty rough physically for a few hours, but I wasn't sick, and was much less groggy mentally. I'm sure it helped that I knew what to expect and was better prepared. I bounced back fairly quickly too - you have to take it easy for a couple of days, but 3 days afterwards a few of us hired bikes and went on a 25 km ride around local villages, among beautiful rolling countryside. It was lovely and I really enjoyed it. 

The following day I went to the thermal baths and swam gentle laps in between relaxing and floating in the wonderful salty water; since then I've made use of the clinic gym, and gone for a couple of runs in the park - my energy levels have been good and I feel better both physically and psychologically when I exercise.

Route of my morning run

The scans show a small improvement (which is encouraging, since treatment is seen as successful if it holds things stable), so the plan is to continue with a few more procedures at approximately 5-weekly intervals (staying for around 10 days each time), and see how things go. My next stay will be in mid-October, which doesn't feel very far away, but it's reassuring to have a structure for the next couple of months. And although there's lots I want to fit in at home before my return, feeling busy and focussed is definitely good!

NEXT STEPS

I came home from Germany feeling much better, both physically and mentally, and spent a lovely few days with my sister Belinda, nephews, and family friends at Bwthyn Bach, our cottage in mid-Wales. 


Back in London I met my specialist nurse at the Marsden, and updated her about my treatment in the clinic. She confirmed that the medical team there are OK with me continuing to have treatment under Dr Herzog, and that they are happy to do my weekly blood tests as well as deal with any problems in between visits to Germany. Communication with doctors at the Marsden has been a bit frustrating at times, as I'm under the care of a big team and tend to see a different doctor each time.That was part of the reason I looked to the German clinic for a more personalised approach, but I've in no way cut my ties with the NHS: I pass on all correspondence and scans in both directions, and I'll have a review here, probably in October. Although the overall consultant is somewhat sceptical about therapies which don't yet have a gold-standard evidence base, I'm hoping that the UK medical team might become more interested in the German approach over time. 


In the meantime, I go back to Dr Herzog's clinic for 10 days in mid-September, for another chemoembolisation in conjunction with all the other therapies, and a review of their effectiveness, in order to plan the next phase of treatment. In any case, whether it involves more chemo or just maximising the functioning of my immune system and general health, I anticipate further visits to the clinic, and I'm very happy to transfer the active part of my care to Dr Herzog for the time being.