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:

UPDATE FROM KASSEL

Firstly, many thanks to those of you who have sent messages of support and wishing me luck - sorry not to have replied to them individually, but I really appreciate knowing that I'm thought about in this new step into the unknown. I'm glad to say that in spite of a busy week leading up to coming to Germany, everything went smoothly and the journey, although tiring, was straightforward. I was very glad to arrive, because the abdominal bloating has been getting worse again, to the point where it's now not only pretty uncomfortable but also hard to bend down to put my shoes on, and it's causing pressure upwards onto my lungs (making me short of breath) and downwards onto my bladder. In addition, a few days before I left the UK I also started getting swollen ankles and feet. There can be various causes for this, ranging from serious to not-so-serious, but memories of my mother's very swollen legs in her final weeks made it quite a scary development. 

So I was extremely relieved to be going somewhere which might help with these symptoms. My impressions of the Arcadia clinic have all been positive: it's a fairly small place, situated in a residential part of town in an elegant old building. There are 3 doctors, 5 nurses and a receptionist, who all get to know you very quickly, so the care is very personal and I feel in very good hands. The apartment I'm staying in is a 10-minute walk from the clinic, and is a delightful light airy place with Scandinavian-style decor. It's around the corner from a square containing several cafes, a bakery, a supermarket and a well-stocked organic shop, and it's lovely having such a comfortable base for my stay.

Treatment started on my first day, after consultations with 2 of the doctors, but the plan for the rest of my visit is being worked out with me as they see how I am and how I respond. The basic rationale is to improve my liver functioning; to address the high levels of inflammation in my body; to use natural anti-cancer agents against the tumours; and generally to support the functioning and metabolism of the healthy cells. So I'm having daily local hyperthermia (heat treatments directly to the liver and lungs) - tumour cells don't tolerate heat as well as normal cell and are therefore more susceptible to damage - combined with various intravenous infusions which target the above areas of concern.  There's also a daily treatment with a pulsed electro-magnetic field machine which aims to increase cell metabolism and improve energy levels. (A lot of these treatments are similar to what I had at Dr Herzog's clinic from 2011-12, but with newer technology and drawing on a wider range of materials.) 

In addition, I'm booked in for a lymphatic drainage massage with one of the nurses, to improve circulation and (hopefully) reduce the swelling and bloating. I've also seen the doctor who specialises in diet (he spent many years as a radio-oncologist but now also practises nutritional therapy), and he's come up with some suggestions about supplements specifically to help liver function, plus a diet which changes the body's metabolism to make it as inhospitable as possible to cancer cells. I'll post more about that later, as it's a topic in itself. In addition, I've had a couple of "counselling" sessions with the doctor who specialises in psycho-oncology - not exactly what I was expecting, as it was quite structured, but very useful thought-provoking. So its a very well-rounded, holistic approach, and it really appeals to me.

However, although all the treatments are "natural" (as in, not using manufactured drugs), they're certainly not negligible in their effects, and on my second and third days I've had a kind of detox reaction, with cramping and digestive upset, and feeling generally shaky and weak. It's made it hard to eat - which of course adds to the disturbances in metabolism and well-being - and I've felt totally exhausted. Apparently this isn't unusual, and is also a kind of feedback to help find the right balance between maximising treatments while giving the body time and rest to process them: this makes sense to me, and I've felt very well taken care of when I've been unwell, but I must admit it hasn't been very pleasant (as well as a stark reflection of how very low my energy is at the moment). So forgive me for not writing more at the moment - I will do when I feel a bit better and can do it justice!

THE NEXT STEP

Since my last post I've been pretty busy planning where I go from here. I subscribe to a number of mailing lists which summarise or give information about alternative treatments for cancer, and the research being done on them. Through one of these mailing lists I heard about a small clinic in Germany which offers a wide range of the best-established alternative treatments, and seems to be very clued-up and cutting-edge in its approach.

So I had a telephone consultation with one of its doctors 10 days ago, and really liked the sound of the clinic's philosophy. As a result, I've arranged to go there next weekend, for a fortnight. The logistics took some sorting out (the clinic isn't an in-patient set-up, and although they have a few rooms for overseas patients, these are all currently full, so I've arranged to rent an apartment instead), but now I'm all set with flights, train tickets, and a hotel for the first night all booked. It's called the Arcadia Clinic (http://www.arcadia-cancer-treatment.com/) and is in Kassel, just under 2 hours' train journey from Frankfurt. 

My personalised programme of treatment will be worked out with me when I arrive, but will include hyperthermia; intravenous infusions of naturopathic substances (both to tackle cancer cells directly, and to deal with the damage done by chemo and radiotherapy by helping the body detoxify / improving digestive functioning / boosting the immune system etc); other treatments such as electro-magnetic and oxygen therapies; and psychological counselling. I really like the sound of its holistic approach, and also it will be great to get a fresh perspective on how to become / stay as well as possible. I've got some great practitioners in London, but I've been doing the same things for a long time now, so getting a second opinion feels very timely. I'll post more details about my treatments once I'm there - I'll have my laptop with me, so I'll still be in reach of email and Skype.

Then immediately I get home I'll go straight on to Findhorn to have another few days of sessions with my healer up there (so I've also arranged my airport transfers, airport hotel, Scotland flights, accommodation and car hire for that week). It means I'll be away from home for 3 weeks, which feels a long time, but it'll give me a chance to focus fully on resting and making the most of the treatments.

It's interesting, it's felt very clear to me that this is the right next step - a gut instinct perhaps - and despite all the planning involved, I've felt very focused, and actually everything's fallen into place very neatly and satisfyingly. It feels like a good sign, and I'm really looking forward to going. 

I've got a busy week till I go: I've just got home from a weekend away (a wonderfully chilled trip to Ghent in northern Belgium with my friend Catherine); I'm spending two days in Sussex this week seeing the alternative doctor and also two sets of friends nearby; then the weekend before flying to Germany is a long-arranged group catch-up with my friend who got married in the USA this spring. So I don't have much time left over, but that feels OK - I find packing takes as long as you have, so perhaps I'll be more efficient than I would have been otherwise! It's great to be able to report that overall life feels pretty good at the moment, and I'll keep you posted!

Ghent's mediaeval centre

One of the many lovely cafes we sampled