UPDATE

Hi everybody

Thanks so much for all your messages of support and good wishes, I really appreciate them. However at the moment I really don't have the energy to reply, nor to talk, so please for the time being send any messages through my sister's or father's emails and they will print them them out for me:

Annabel: annabel@annabelkapp.com
John: johnkapp@btinternet.com

I may be going into the local hospice tomorrow after another drain procedure to get a real rest, so this seems a good time solution, as this is always very exhausting. 

Thank you very much!

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.

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