CHALLENGES, AND BACK TO KASSEL

Although I found the care at the Kassel clinic second to none, and was very impressed by the staff there and their dedication to finding the best possible combination of treatments for me, I've continued to have problems with the ascites building up again, and with jaundice. I managed to go straight on to Scotland for the following week as planned, to have some intensive sessions with the healer I see up there, and that was extremely helpful too – it helped not only with easing some of the physical symptoms but also in helping me come to terms emotionally somewhat with just what a weakened physical state I was in, and how suddenly things have changed into a new, more complex phase.

My main difficulties have been that the excess fluid in my abdomen makes moving around very uncomfortable: it’s hard to bend forward, it can be hard to find a position to sit or sleep in, and the pressure on the lungs makes me very breathless with even small exertions like walking from one room to another or turning over in bed at night. In addition, the swelling in my legs (now the whole length of them, not just the ankles) makes them very heavy, and makes walking a real effort. So in Scotland the day-to-day things like preparing food, getting in and out of the hire car, and getting dressed and undressed were very laborious and exhausting. It was very sobering and has meant a huge adjustment to my normal ways of doing things.

So I continued to liaise with the clinic doctors in Kassel. They'd been looking into getting a newly-developed self-managed drain for the ascites to be implanted while I was there, but unfortunately it turned out not to be possible to arrange it  – mainly because it’s such a new product that very few doctors are trained in it yet – and given that managing the ascites makes such a difference to the quality of life, we arranged that I would go straight back to Kassel for another fortnight. There was, yet again, a great deal to organise, with travel and accommodation to sort out as well as rearranging everything I'd booked back at home, and it was tiring to travel again so soon, but I felt very strongly that I wanted to be in the place where as much as possible could be done.

So here I am back again, after just one day back at home to turn around. The plan is not only to try and find a surgeon who will install the drain, but also to give me an intensive course of a brand new anti-cancer agent called curcumin. This is the active ingredient in turmeric, whch has long been shown to have anticancer properties in lab studies and animal trials (there are apparently more than 2000 studies on PubMed), but so far it's only been available in tablet form, and the dosage is therefore limited by what the gut can tolerate. However, in Germany a doctor has recently patented it in intravenous form, and here once a drug or remedy has passed safety checks to prove that side effects are acceptably low, it can legally be prescribed by any doctor, without having to go through large-scale randomised control trials (as is the case in the rest of Europe and North America). This means that substances can be used without the prohibitive costs of such trials (in practise, only the huge multi-national pharmaceutical companies can afford to run these, as they can cost billions of pounds), and that’s the reason that German doctors are legally able to draw on a far wider medicine base. So curcumin became available as from 1^st October, and I feel very lucky to have the chance to try it.

So despite the effort required in getting here again so soon, I feel like I’m in the best possible place. To my amazement and gratitude, 2 friends spontaneously offered to come out with me, between them covering the journeys out here and back home with me, as well as almost all the time I’m away, and that’s made an enormous difference - not just having the practical help of carrying bags etc, but also the moral support and company.

The one downside is that the apartment I was staying in before wasn’t available so I’m in another one, which is very comfortable but doesn’t have internet access, which is why I’ve taken so long to update the blog and let you all know what’s happening. It’s strange being somewhat incommunicado, but the days are pretty long and intensive (there are a couple of other daily treatments, which I'll describe another time), so I haven’t had much energy by the evenings anyway. But at least it means that my only focus has been on getting as much benefit from being here as possible and then resting, so perhaps it's good not having any other distractions! And I'm definitely feeling some improvements compared to how I was when I arrived, which is encouraging even though I know the challenge is in maintaining them. I feel I'm extremely good hands and am very grateful for the opportunity to be here.