JANUARY BLUES (GREYS?)

I returned to Dr Herzog's clinic just after New Year for another 10-day stay. The clinic had been quite quiet over the festive period, but elaborate Christmas decorations were still up.

Main entrance to the clinic, festooned with lights

Rather kitsch, but 10 out of 10 for effort!

Lots of people have commented on how positive I always seem, so I'm sorry to disillusion you, but I had a few low days there this time. I'd been very tired even before I arrived (I think the skiing took a lot out of me), and after the escapism of a holiday, followed by Christmas and New Year celebrations, being back in a medical setting was an unwelcome return to reality. Plus I went down with a cold, and felt rather miserable and sorry for myself. It's funny how you get used to coping with the big stuff, but it's the little things which feel like the final straw and bring out the self-pity! So I wasn't particularly sociable at first, and didn't go out for my usual walks (the weather was a bit depressing too, not cold but almost constantly grey and rainy and windy), and instead spent a few afternoons curled up on my bed, reading or watching DVDs on my laptop to distract myself. I also used Skype a few times to talk to close friends and family, and that was a wonderful morale boost when I needed cheering up. 

By the second half of my stay I'd stopped moping, and I enjoyed getting to know my fellow patients and their accompanying partners / adult children / parents / siblings. As ever, it was fascinating, reassuring and awe-inspiring to hear their various stories. There are almost always similar themes, but of course every person's experience, and response to their situation, is unique, and although occasionally I'd get to a point where I didn't want to talk about cancer any more, most of the time I find it really interesting. I think that not only does it validate, and give perspective on, my own experiences, but also focusing on someone else takes me out of my absorption in myself and my health. In some conversations, especially with people on their first visits, I was able to pass on information about how the clinic system works (or sometimes doesn't!), just as others helped me negotiate it when I first arrived. Now that I'm not working it's harder to find opportunities for feeling useful and knowledgeable, so it was great for the ego to be able to be back in that role again!

All went fine with the chemoembolisation procedure - it's never particularly pleasant, and I'm always a bit exhausted and sore afterwards, but Professor Vogl, the surgeon, is happy with how I'm doing, and so is Dr Herzog - so I'm booked in for early February for the next one. And as usual all the other treatments have been very effective in raising my energy levels and keeping my immune system relatively unimpaired. So I've come home with the positivity back in place!

A break in the clouds - I guess there always is one if you wait long enough....

TECHNOLOGY (UPS AND DOWNS)

Quite a few people have told me that they like following the blog but they don't know how often to check it, and wondered if they could be alerted when there's a new post to read. I had no idea how to do this, short of emailing everyone each time I post something (which would rather defeat the object), but I've discovered from the husband of a fellow patient that there is a way! involving a device called an RSS reader. Andy, who's at the clinic with his wife Jen, is extremely techno-savvy (their blog is impressively high-tech, putting mine to shame since half the time I can't even put photos where I want them!) and he's kindly given me permission to copy his instructions here for how to set it up. 


If you use Microsoft Outlook for your emails, you can configure it to download automatically any new content. To configure Outlook 2007:

• On the "Tools" menu, click "Account settings"
• On the "RSS Feeds" tab, click "New"
• In the "New RSS Feed" dialogue box, type the blog address (http://sylvia-sylviasnews.blogspot.com )
• Click "Add", then "OK".

The RSS feed can be renamed if required by right-clicking and selecting "Rename folder", and additional RSS feeds (for any other blogs you want to follow) can be added. Once you've done this, whenever I add new posts to the blog they'll automatically appear as unread items in your Outlook RSS Feeds folder.


Alternatively, there's an RSS reader app for iPhones and iPads, where you can add various RSS feeds (i.e. any blogs you'd like to follow regularly), and all new content will be downloaded to your device. The app is called MobileRSS, and can be downloaded for free from the Apple Store.


Hope this makes sense, and that you find it useful! Thanks to Andy for letting me know about these 21st century innovations... 


On the downside of technology, last week my email account started spouting spam, sending out junk emails raving about a cheap site to buy iPhones (if someone hacked into my account, they clearly don't know what a Luddite I am!). Apologies to anyone who received these. Hotmail quickly blocked my account, which is good, but unfortunately I couldn't prove that I'm really me until I got back to the UK yesterday, so I was incommunicado for a few days. All's sorted out now, and I'll be posting about my recent clinic visit as soon as I've caught up with my inbox.

SKI HOLIDAY

My week in Val d'Isere was just great. I hadn't quite let myself look forward to it too much, in a kind of superstitious fear that something would go wrong with my health and I wouldn't be able to go after all (maybe I was scared that Fate would punish me for the audacity of going skiing in between chemo treatments...) But all went well and it was lovely to be back in the mountains. And it snowed and snowed and snowed! Unfortunately that meant the conditions weren't great for the first few days: blizzards, high winds meaning that lots of lifts were closed, very poor visibility, thick heavy powder - knee-deep in places even on piste - which was hard work to ski in, and temperatures up to (or down to?) minus 25 degrees centigrade with wind chill. 

View from my window mid-week

8 a.m. on departure morning

I found the skiing pretty hard going to start with, and I was a bit worried on the first day whether I'd be strong enough to cope with the physical exertion; but I gradually got back into my stride, and when the weather improved and the sun came out at the end of the week, I enjoyed some truly exhilarating skiing. I took things a bit easy, made sure I got decent amounts of sleep, and certainly skied quite carefully, but I was delighted that I had enough energy and stamina to keep up with all but the keenest skiers at my level. And to make the most of the wonderful fresh snow!

View down the valley to Val d'Isere

Ridiculous amounts of snow (for comparison, the guy is 6' 4")

Glorious views above the clouds

Coffee stop in the very welcome sunshine

Last run of the day

My fellow skiers were a very nice friendly bunch, and although I don't drink these days (I reckon my liver can do without the extra stress) it was still very sociable. I even spent one evening dancing to one of the live bands - proved to myself that I'm not past it yet! I'd decided not to talk about my situation, and although that meant slightly misrepresenting my life (e.g. talking about work in the present tense), it was just so nice having conversations about all kinds of things from ski stories to world politics, rather than cancer and treatments and supplements and medical matters. It was like a holiday from the preoccupation with my body and my health which has become "normal", a reminder that I do have other interests and sides to me, and it was just wonderful not feeling defined by cancer. 


At the same time, I didn't simply slot back into how I felt on previous ski holidays - the routine and structure was the same, but I'm not: the past year has changed me, and I realised that you can't ever go back in time to a younger you. I also became aware how much pressure I'd put on myself to have "the most amazing time ever" (which, as you can imagine, is a pretty high expectation to have of any holiday!) and I had to get past a bit of disappointment that the week wasn't transformative or transcendent. That said, it was really good fun, it was a brilliant break from my rather tame day-to-day life, I loved having a different kind of challenge to rise to, and it felt like an enormous achievement, both physically and emotionally. So a wonderful end to 2011!

Icicles above my window at dawn

CHRISTMAS GREETINGS!

I've opted make life easier on myself by not writing Christmas cards this year - I hope you'll forgive the lack of personalised communication. A number of people have told me that they like the blog and have found it a useful way of keeping up to date with what's happening with me, so although of course I don't know how others find it, I hope that it doesn't feel too impersonal a medium for a Christmas message. 


I've been very moved by all your comments on the blog - what lovely people you are! - as well as your emails and other messages of support. It means a huge amount to me and has made me feel extremely cared about. I guess life-threatening illness (or any crisis) can be very isolating, since no-one else can know exactly how you feel, and sometimes writing the blog feels a bit lonely as there's no way of knowing whether people will read it or what they'll think, so getting your feedback has been very reassuring and encouraging. And I've been amazed to realise just how many people have been concerned about me - not just those who are close in my everyday life, but extended family, colleagues from work and my professional networks, and friends and acquaintances from school, university, travelling, orchestras past and present, group holidays, the clinic... It's made me appreciate how we can be touched, even in small ways, by everyone we come across, and that all kinds of relationships with other people - personal, professional, social, incidental - go into making our experiences, and our sense of ourselves, what they are. I feel very blessed to have so many people take an interest in me and wish me well, and although I've been pretty rubbish at saying it individually, I'm overawed by that, and can't thank you enough.


In terms of my plans for Christmas: in spite of being newly retired on health grounds (or actually, in defiance of it!), I'm now off for a week's skiing in Val d'Isere, and am incredibly excited about it. Skiing has long been a passion of mine, and when I had to cancel a ski trip in January 2010 (I'd just started chemo, and besides was feeling pretty weak), I was gutted to think I probably wouldn't ski again. My next trip to Germany is just after New Year, which is a slightly longer window between treatments than usual, so this was the perfect opportunity to go. Plus I'm very aware of the importance of seizing the moment while I'm well enough. So although I'm prepared to take things as gently as I need to, I'm thrilled to be going.


When I get back I'll be spending Christmas with my sisters and their families, my father and his wife - all the Kapps together - and am really looking forward to it. I wish all of you a wonderful Christmas - I hope that wherever you are and whoever you spend it with, it will be full of warmth and affection and fun. Whether for you it's a spiritual occasion, or a welcome break from work, or a reunion with family and friends, or a chance to indulge and kick back, I wish you and those who are close to you all happiness, health and good cheer for both Christmas and the New Year. May 2012 bring joy to all of us!


Much love to you all, Sylvia 

WORK UPDATE

I've been very lucky to have generous sick leave (6 months on full pay followed by 6 months on half pay) from my job as a clinical psychologist. A locum has been covering part of my post, but as the 1-year mark came round I had to decide whether or not to return to work, and after a lot of thought, I've decided not to. A significant part of the job is doing therapy, which means committing to however long clients need (often up to 3 or 4 months), and I simply don't feel able to plan that far ahead on a continuous basis - although I'm feeling pretty well at the moment, I know things could change at any time. And the idea of reducing my duties to admin only, and not doing any therapy - which for me is the most interesting and rewarding part of the role - was soul-destroying. 


It was a tough decision not to go back, as I've been there for 7 years and at the beginning I absolutely loved it and really felt that I'd found my niche. However, there wasn't really any opportunity for promotion, which had been getting me down, and I think I'd probably got just about as much as I could from it. So although I'm sad to be no longer part of the clinic, and to say goodbye to colleagues who I've loved working with, it also feels good to recognise that things have changed and it's time to move on. At my leaving do I was very touched by the support and good wishes from my colleagues, many of whom have become good friends, and in spite of its poignancy it was a really nice way of marking the end of my time there.


Because of the uncertainty of my situation, it doesn't feel feasible to look for another job. I'm spending nearly 2 weeks out of every 5 in Germany at the moment, as well as needing to fit in my other alternative therapy appointments. In addition, I'm certain that one reason I'm doing well at the moment is because I've reduced the amount of stress in my life, and by not working I have the flexibility to rest and pace myself as I need to.


So I've decided to take medical retirement, which essentially means that I'm claiming my pension early. It doesn't rule out working in the future if I'm up to it, and if I find something which can fit around my treatments, but it means I'll have some income. In addition, with the help of an adviser at one of the cancer charities I've been granted some benefits - Disability Living Allowance (which isn't means-tested) and Employment and Support Allowance. I've found it extremely hard to come to terms with being entitled to them: partly because I feel fairly well and therefore guilty about claiming public money; partly because I'd never expected to need benefits and it's an enormous shift in how I see myself (especially as I've been used to being a professional helping others with claiming benefits, so it's very odd now being one of those people myself); and partly because qualifying for these benefits despite my current relatively good state of health is an unwelcome reality check on how the medical profession views my prognosis. So it's been a tricky process, to be pragmatic about accepting financial help with the costs involved in managing a serious health condition, while not writing myself off in my own mind. However, it gives me the flexibility to continue looking after my health as I've been doing throughout this last year, and now that I've got used to it to some extent I'm very grateful to have that stability.

TREATMENT UPDATE

After my jaunt to Cologne, the rest of my stay at the Herzog clinic went very well. I've uploaded some pictures to give you a flavour of the treatments there:

Local hyperthermia was for an hour every day, with a heating plate positioned over the liver, alternately from the front  and the side. I had oxygen at the same time, via a tube in my nostrils, to enhance cell functioning.

There were also daily intravenous infusions of vitamins and various naturopathic remedies, to stimulate the immune system and to help cells detox from the chemo - you can see the bottle hung on the stand. 


Although sometimes the heat became a bit uncomfortable, mostly I found the hyperthermia very relaxing, and I generally spent the time listening to music on my iPod.

Twice a week I had ozone therapy - this involves taking about 50 ml of blood into a small container, adding ozone, and shaking (like a cocktail shaker!) to mix it into the blood. This oxygenates the blood (you can see it turn from dark red to bright scarlet), and it is then released back into the vein. Higher oxygen levels in the body inhibit tumour growth and improve the respiration of healthy cells.

Magnetic field therapy was three times a week, and consisted of lying with a cylinder positioned around the tumour area, within which a magnetic current circulates for 20 minutes. The aim of this is to improve metabolic functioning, reduce over-acidity of cells, and stimulate healing. The effect is subtle but produces a feeling of calm alertness and well-being.

I haven't included photos of the back massages or reflexology (you know what those look like), or the chemoembolisation (I reckon that a picture of a catheter being inserted into my groin would be too much information!) The chemoembolisation went well and the feedback from the surgeon was again encouraging, with a little more tumour shrinkage and indications that the tumour is less aggressive. As I understand it, there's generally a ceiling effect for how much improvement this kind of chemo can bring about, but it's certainly buying time and quality of life at the moment. My next treatment will be in early January.


In between all the treatments it was lovely to catch up with old friends Linda (from my first visit in July) and Hilary (whose stays coincided with mine in September and October as well), plus making new friends including Cathy from the USA and her husband Dick (who are both professional musicians, and I loved hearing about the world of pro symphony orchestras). As well as meeting a range of really nice people, the clinic is somewhere where I feel "normal", where people aren't freaked out by cancer and don't mind talking about the grittier stuff, and where there's a great deal of camaraderie and support. It's a self-contained little world there, and although I find the transitions between the clinic and my London life quite challenging at times, it always feels safe and reassuring to be there. And, hard though it might be to imagine, we do also have fun sometimes! 

Cathy and Dick in the dining room

Linda and I with Manuela, one of the nurses

With Linda and Hilary

WEEKEND IN COLOGNE

I took advantage of being back at the clinic to have a weekend away with my old schoolfriend Catherine and see a bit more of Germany (there are no treatments on Sundays so it's generally pretty quiet at weekends). Catherine lives in Brussels so we arranged to meet in Cologne, roughly half-way between us and about two and a half hours by train from Bad Salzhausen (despite two changes, a very easy journey, thanks to the efficient German railway system). My friend Linda from Australia, a fellow patient who I'd met in July and who was back at the clinic as well, was also meeting a friend for the weekend further up the line, so we travelled together, all excited and giggly as if we were playing truant! 

Cologne's landmark cathedral, surrounded by Christmas markets

In the old town

One of the many historic breweries

Evening skyline from our hotel window

It was lovely to see Catherine, and we spent our time wandering around the old town and along the river, hanging out in cafes, catching up and talking late into the night. The Christmas markets were just starting up, the squares were lavishly decorated, and there was a great atmosphere.

Christmas lights

Even when it's alcohol-free, a beer's still a treat!

Although it was just for one night, it was great to break up the stay at the clinic with something fun, and I came back feeling like I'd had a mini-holiday. I keep saying I really must learn some German, but somehow I never seem to get past, "sprechen Sie Englisch?" - so it was great having Catherine as interpreter (although not so much of a holiday for her!)