GERMANY AND BEYOND

A lot's been happening since I last wrote. The treatments in Kassel continued to be very good, but involved long intense days which left me pretty tired. However the clinic doctors arranged for me to have the permanent drain surgically implanted into my abdomen, which we all hoped would make it much easier to manage the ascites fluids and stop them building up and causing such discomfort. This was done at a hospital over 200 kilometres away, so it was a long day trip, but a friend of one of the doctors offered to drive me and my friend Amy for a good price, and also to help with any translation issues.

I was sedated, which was just as well as apparently it didn't all go totally smoothly, but I felt OK, if a bit tender, once it was installed, and the next day the representative from the company came to talk us all through the system (it's a brand-new version of a long-existing system). It was fiddly to drain the fluid, but Amy and I managed it OK after a bit of practice - it was definitely a 2-person job.

A couple of days later the guy who'd driven us over took us on a bit of a tour of Kassel, which was lovely - and Amy and I went out for lunch a couple of times too which was great. Although I feel very self-conscious about my jaundice, it was good to do some normal stuff too.

Funky transport

View from the Herkules monument over the town...

... and up to the folly from the museum

Beautiful autumn leaves round the Schloss (castle)

However, once I got home a couple of weekends ago, things weren't so easy. I had some leakage from the new system, and then after 2 days at home major leakage in the middle of the night, which was rather scary and unpleasant. I called an ambulance, as uncontrolled leakage can cause a sudden drop in blood pressure, and was admitted to Chelsea & Westminster (the Marsden doesn't have an A & E): the new drain had become dislodged and the tube had worked itself out of my body. I spent a few days of last week in hospital and they fitted a stoma bag (used for colostomies and basically a plastic bag which sticks over the wound and drains continuously, and can be emptied and the volume coming through monitored). 

Although it's never nice being in hospital, and I didn't get much sleep, this system kept the pressure in my abdomen down so that I felt much more comfortable, and it was definitely easier than the drain. My legs became much less swollen, which helped a lot, but by the time I was discharged I felt quite weak. However the good thing is that all the support systems have kicked into place - there's a discharge liaison service from the hospital, district nurses to cover medical issues, and the continuing care team from the hospice linked to the Marsden (essentially the same as Macmillan nurses), who in theory all work closely together, although that hasn't quite started working seamlessly yet. I would have expected all this to feel quite scary, moving into another phase with home support, but actually it feels a huge relief right now to have expert advice to call on - and it can be tailored up and down as you want / need, which is very reassuring.

Over last weekend the fluid stopped draining into the bag - presumably because the wound has now healed up - so the pressure's building up again, and I'm going in to talk to the C & W team and decide the next steps to manage it. Emotionally it's all been pretty tough, a very stressful roller coaster, and new territory for me, but I feel in good hands. At the moment the Marsden are taking a back seat, since I'm not under any active treatment there, but I'm assured that everyone's liaising closely.

Overall I'm doing OK, but I'm feeling physically quite weak and washed out, and mentally a bit fragile - so much has happened in the last 6 - 8 weeks and I haven't had much time to process it till now. However I see the emotional fragility as a good sign - there's bound to be a reaction to such a sudden change in my health and the limits to what I can do at the moment. So forgive me for not initiating contact, or replying to well-wishers - I simply haven't had the energy, and am not really up for visitors (apart from family and a few close friends) until I get my head round things a bit. Just as my friends Thea and Amy were wonderful supports to me in Germany, my sisters have been fantastic at both practical help with shopping and cooking, and moral support. So I feel incredibly grateful for that. And after 2 weeks in Kassel, a week in Scotland, another 2 weeks in Kassel, then 3 or 4 days in hospital, I'm really appreciating being at home again in my cosy little flat!

QUICK NOTE ON CONTACT

Thank you so much for all the messages of support I've received since my last update - I really appreciate it. I just wanted to clarify that although there is internet access in the clinic, I can't really use it much, as almost all the time I'm here I'm having treatments (some of them involving lying down), and as there aren't many treatment rooms patients often have to move around at short notice. There aren't any tables in the treatment rooms and because of the swelling in my abdomen it's not comfortable to balance my laptop on my knee; also my rather old laptop is very heavy to carry around. Most of the day I'm hooked up to drips (sometimes 3 or even 4 at a time), so with all the fluid going into me I spend a lot of time in the bathroom - and moving around pushing a large heavy drip stand is pretty laborious. So all this doesn't leave much time or energy for anything else!

So although I've managed to do these 2 posts and briefly check my email, I haven't had, and probably won't have, the opportunity to reply to emails while I'm here. Please don't let that stop you writing if you'd like to, as it's really nice to know that I'm thought about and cared about: I just wanted to make clear that I'm not currently in a position to answer.

In a similar vein, when I was at home for my brief one-day turnaround I discovered a Post Office "while you were out" card letting me know that someone had very kindly sent me flowers at the beginning of October, while I was in Scotland. I didn't have time to go and collect them, and asked a friend to do it later, but stupidly forgot to leave some ID, so I'm afraid I never found out who they were from. Sorry not to be able to thank whoever it was, but the thought is much appreciated!

I will try to do another update at some point next week if I can, but if the logistics don't work out, I'll write when I get home. Thanks again for following me through this tough patch - it means a great deal to me to have people following how things are going and wishing me well.

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.