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!