EVERYTHING YOU NEVER WANTED TO KNOW ABOUT BODILY FLUIDS (AND GERMAN HOSPITALS)

After my last post, things changed course rather. Although I'd had abdominal bloating for some weeks, on and off, it reached a point where it was preventing my digestion from working properly. Basically, the bloating was caused by a build-up of fluid in the abdomen, which can be due to a variety of factors: cancer cells can block the flow of blood through the liver, leading to a build-up of fluid; damage to the liver (either from treatments or from tumour growth) can mean that it produces less blood protein, which affects the body's fluid balance; or cancer cells can block the lymphatic system (which drains off lymph from the body and breaks it down to be excreted), meaning that normal fluid gets stuck in the abdominal cavity and builds up over time. Forgive me for my limited knowledge of the lymphatic system, but my rather simplistic understanding is that lymph is part of the blood, which filters out of the blood vessels to nourish the cells, and although most of it returns into the veins, some of it remains outside the blood vessels and contains proteins, cellular debris, bacteria etc., which has to be collected by a separate system. Lymphoedema, which is where the arms or legs get swollen and painful, is a similar problem in some forms and stages of cancer, but when the fluid is in the abdomen, it's known as ascites (pronounced ass-eye-tees).

So by the end of last week these ascites were pressing on my intestines and making life very unpleasant, as well as uncomfortable, and the doctors at the clinic decided the fluid needed to be drained off. This isn't a difficult procedure but has to be done in a hospital setting, not an out-patient one like Arcadia, so they arranged for me to be admitted to a hospital in a nearby town. I'd expected to be there for a couple of nights, but ended up staying four nights, which was quite tough. They made an incision through the abdominal wall (through the muscle) and put in a tube which drains into a bag, and the bag is changed as it fills up. They took nearly 5 litres of fluid from me over the four days (nearly 4 kilos of weight loss), which was sobering. It can't be done too quickly, as it can cause a sudden drop in blood pressure, so it was done in stages and I was monitored throughout.

I did feel some relief as the fluid was removed, but it took a while, as the body seems to need to rearrange everything, and the hole in my side was quite sore for a couple of days. In addition, my electrolyte balance was disrupted (the salts and minerals in the cells), and I felt absolutely exhausted - I didn't get out of bed the whole time I was there. I didn't have much appetite, and I felt a bit icky about being attached to a bag (the fluid was a horrible garish yellow, which was a bit unpleasant), and I had to carry it with me every time I went to the bathroom (along with intravenous drips of protein and electrolytes to restore the balance). 

So although I rested a great deal, it wasn't an easy experience. Everyone was very friendly and kind, but I felt quite vulnerable not being able to communicate much (only a few of the staff spoke any English), quite apart from the usual powerlessness and passivity which comes from being in hospital and quickly getting institutionalised. The good things were that I had a private en-suite room and it was quiet at night so I could sleep much better than I ever have on a ward. Also I was admitted as an emergency case, which meant that everything was covered under the EU reciprocal health system, and therefore I didn't have to pay for any of it. What an incredible set-up - with my EHIC card I could access the very best of treatment abroad and have it funded by the NHS - long live Britain's membership of the EU....

I couldn't face telling lots of people I was there as I didn't have much energy - and I'd also forgotten to bring the battery charger for my mobile phone - but my (German-speaking) friend Catherine was a star, ringing the clinic in Kassel to get the phone number for the hospital, and then arranging for a phone line to be set up for me so that she and my sisters could ring me - and that link to the outside world was a real lifeline, and kept my spirits up. The rest of the time I slept, read, meditated and listened to music, so the time didn't hang too heavy overall.

However I'm very relieved to be back in my apartment in Kassel. While the skin wound heals I have a small bag attached (no tube, just strong adhesive) to the hole, to catch any leakage, but it's pretty discreet and very manageable. I'm still feeling pretty tired, but much more comfortable even though my abdomen is still a bit swollen and tender, and my feet and ankles are pretty much back to normal which is great. I'm back on the clinic treatments quite intensively - I had over 4 hours' worth of intravenous infusions yesterday, aiming to help stimulate liver functioning and general detoxification, as well as the hyperthermia for an hour and the electro-magnetic treatment for 20 minutes.

The not-so-good news is that ascites tend to come back after being drained off, and given the extent of disease in my liver, this is likely to be an ongoing problem.

My liver function is still a worry (I've been slightly jaundiced for the past week or so), and unfortunately until that's stabilised the clinic can't do much in the way of targeting the tumours directly, since if the liver can't process tumour breakdown then it would cause a build-up of toxins and further difficulties. Also, although I've had problems and hospital admissions before, those have been connected to the side-effects of chemo, and this is the first time that my symptoms are due to the actual tumours themselves. So it's been rather scary to confront being at a stage where my options are much more limited than they were a few months ago, and to realise that my liver is in quite a serious state. The implications of that aren't clear yet - it depends how well I respond to the treatments - and I'm finding that hard, but am trying to take things a step at a time, and just wait and see how things are by the end of the week. I'll keep you posted.

A few shots of my lovely apartment: