TWO'S COMPANY

July, and yet another stay in Bad Salzhausen... The start of this visit was made much more pleasant by having my friend Mischa with me for the first couple of days. It was great having company to go to cafes, for walks, and into nearby Nidda, as well as sitting over breakfast chatting – at times it felt like being on holiday! 

Mischa in Nidda

Bridge and waterwheel in Nidda

However the main thing I valued was having someone see and experience, and understand, what it’s like here – the ups and downs, the frustrations, the camaraderie, the unique kinds of conversations that take place. Of course I’ve talked about clinic life to lots of people, but describing a place is never the same as experiencing it. (Another friend, Sharon, came to accompany me home from my first visit here, but unfortunately wasn't able to stay long; Jacqie came with me on my reconnaissance visit so knows what it all looks like; but Mischa is the first to get much of a feel for the rhythm of clinic life.) One thing she commented on was the amount of effort which goes into organising my care here - as an out-patient you have to chase up everything, from blood tests to infusions to making appointments to arranging for prescriptions of supplements, not to mention booking transport and guesthouse. So it was nice to have that acknowledged, and to realise that it’s no wonder I find it hard work at times!

In addition I found it extremely validating to have someone from home “bridge” these two worlds I inhabit. At home, because I look and seem fine, my friendships and relationships have mostly remained quite similar to how they’ve always been – we meet up, go for coffee or a meal, talk about what we’ve each been doing – and although of course I talk about my treatments, my dilemmas about the multitude of contradictory advice out there, and how I’m feeling, I’m still in the role of someone who’s “well” and (although no longer working) living a fairly “normal” life. I don’t in any way want to think of myself as “ill” (and I work strenuously to avoid taking up that role, including not asking for help), but when I’m at the clinic I  am of course a patient, and undergoing medical treatments, and am surrounded by people who, to varying degrees, are unwell, and our common ground is our unwellness. (The good and bad parts of being at the clinic both stem from being connected to other people through unwellness…)

And although I don’t want people at home to think of me as “ill”, at the same time it’s been quite strange having such a big part of my life somewhat invisible, out of sight here in Germany. So sharing that with someone from my London life felt very positive, and left me feeling quite buoyed up. 

 Out for a drink in Bad Salzhausen (alcohol-free beer is nearly as good as the real thing!)

LOOKING INTO THE VOID

In alternative medicine I've encountered a strong belief, especially in relation to cancer, that a fighting spirit, a refusal to give up on life, leads to better outcomes. I'm certain there's some truth in that, and I do believe I can influence, to some extent, how long I live - although some of the positive-thinking brigade make it sound as though all unhappiness, suffering or death is caused solely by insufficient positive mental attitude, conveniently ignoring the fact that plenty of negative or fearful or miserable people live till old age, and that even the most positive people still have to die at some point. Since my diagnosis, despite believing that I hadn't long left (which was also the medical prognosis at the time), I haven't really allowed myself to think about death at all - partly it because it seems so abstract, and partly because all around me is this exhortation to be positive: from other patients, from cancer survivors' memoirs, from my therapists, from every book I read; and reinforced by friends and family congratulating me on how upbeat I seem (and desperately wanting me to be, or seem, alright). I know all of these are intended to be encouraging, and often the message "you can do it" is indeed inspiring and supportive; but at times it can be a huge pressure (oh no, not only am I feeling frustrated / resentful / low / stressed / self-pitying, but also I've failed to stay positive, and if I let negativity creep in it will make me more ill, and it'll be all my fault....)


And in the past year I've come to realise that at least some of my "positive attitude" is actually not positive at all but reflects a belief that it's terrifying and unthinkable to die, and that I mustn't ever allow it to happen to me. I've somehow slipped into viewing death as something to be staved off with willpower, which leaves me feeling almost totally responsible for keeping myself alive (ideally indefinitely). I guess it's a kind of superstitious belief, and since it demands constant vigilance it's exhausting. It's also quite scary (what if I'm not doing enough?), and it makes it hard to enjoy things (including being relatively well at the moment) in case I tempt fate by relaxing and thinking things are OK, and thus cause everything to go pear-shaped. And of course I'm setting myself up for failure, as - whether it's sooner or later, from cancer or something else - I will still die. (Obviously I've always known this intellectually, but I think I've been trying to convince myself that I can make sure it doesn't happen if only I eat the right food / do the right treatments / refuse to countenance the mere possibility....) 

Although this attitude has probably served me reasonably well up to now, it's pretty hard work, and probably isn't the best use of my mental energy, especially at the moment. So I decided it was time to plunge into the murkier bits of my psyche, and signed up for a weekend workshop exploring death and dying, with the aim of facing the fears, making some kind of peace with the fact that we're all finite beings, and hopefully becoming able to live without constantly worrying about whether I'm fending off death well enough. I found the workshop very helpful, and although naturally it was quite intense at times, and certainly brought up a lot of emotions, it was very clearly life-affirming: what I took from it was that by accepting the fact of death, and the impossibility of knowing when it may come, it should be possible to live with less anxiety about it. Similarly, by no longer fighting the fact that everything's impermanent, and wasting energy worrying how long it'll be till things change, it becomes easier to fully enjoy things while they last. I'm not there yet, but I'm perhaps a few steps closer! 


I also found it particularly helpful to remember that it's not just me who's facing this - yes, it may be that not many of my peers are thinking much about it right now, but being reminded that mortality is universal (not a tragedy which affects only poor little me) was something I found very reassuring and comforting. I think that being able to face doing the workshop at all was a significant step - previously I think I was afraid that if I accepted that death is inevitable (for us all), it would automatically mean giving up on life, or no longer seeing any point to living or fighting for health. (I've also found that people who care about me often have mixed feelings about me delving into this area, in case it's a sign of me "giving up hope" or in case it upsets me.) However I think it's probably more like the opposite - that acknowledging that death is natural and not a sign of failure allows one to embrace life more fully - and I found the weekend left me with quite a noticeable sense of relief. (The workshop's held a couple of times a year, so if anyone's interested in more details about it, let me know, or have a look at the website www.livinganddying.co.uk.)

I must admit I didn't tell many people exactly what the course was about - it felt not quite the thing to drop into social chitchat! - and I'm aware that it's not only me who finds death a difficult topic, so I'm sorry if this post is hard to read (though I'm guessing no-one reads this blog for light entertainment!) So I'll do my usual smoothing-over in order to finish on a more cheery note (of course with some nice pictures): the course was held in the far west of Cornwall, and having never been to that part of the country before I took the opportunity to rent a self-catering apartment and stay a couple of nights longer. I hired a car and spent a day exploring Lands End, Penzance and St Ives. I loved the feel of the place, wild yet peaceful, and it was great having a bit of time to process things and let them settle before going back into mundane life. 

View from my apartment over Cape Cornwall

The coastal walk just north of Lands End

St Ives harbour

Spectacular sunset (no metaphorical meaning intended!)

TECHNICAL MATTERS

A few people have told me that they haven't been able to leave comments on the blog - I've checked that all the settings are correct, and as far as I can tell it should work OK now. You need to click on the words "0 comments" (or "1 comment" or whatever) at the bottom of what I've written, next to "Posted by Sylvia", and that will open a new window with a box where you can type your comment. Just click inside the box on the words, "Enter your comment", and you can start typing. Underneath the box it says "Comment as" followed by a drop-down menu - if you have a Google profile you can sign in, or else you can select "Anonymous" - though if you do this, please include your name in the comment box, otherwise I'll have no idea who it's from!


Other people have told me they like reading the blog but don't know how often to check it  - and I realise I do tend to have flurries of activity, rather than writing regularly - so although I'm completely at sea with all the new technology out there, last night I bit the bullet and spent a couple of hours trawling the internet to try and find out how to add the facility for subscribing to the blog. Eventually I found how to do this, and my understanding of it is that if you become a subscriber you'll get notified whenever there's new content on the blog - that is, if I've set things up correctly! 


You'll see that there are now two links on the top right corner of the blog. If you click on the top one, "Subscribe to Sylvia's news by email", it'll open a new window and invite you to enter your email address - then you'll get an email every time I put anything new on the blog. (I think it actually sends you what I've written in the email, but I'm not sure as I haven't tried it out myself - it would feel a bit sad to be the first subscriber to my own blog!) I don't think you can leave comments directly from the email feed, as it's called, but if you click on the title of the post (e.g. "Technical matters") you'll be taken straight into the main blog.


If you have other news sources already streamed into one place, you can add this blog by clicking on the second link "Subscribe in a reader" next to the orange and white icon. This option is good if you prefer to reduce emails and if you stream all the websites you read regularly into a single location. If you do this, then by definition you already know way more about it than I do, so I won't embarrass myself by trying to explain it any further! 


I hope that this makes it easier to keep up with what I'm writing here, if you'd like to. If things don't work as they should, please do let me know (either on the blog or by email), and although I'm not sure whether I'll be able to find the solution, I'll certainly do my best!

...AND ON TO THE CLINIC AGAIN

From Heidelberg I took the train to Bad Salzhausen for another 10-day stay at the clinic, and once there I realised how tired I was, both physically and emotionally. Fortunately there were a few fellow patients who I already knew, including my friend Hilary, so I had congenial company for meals without feeling like I had to go through all the usual "what kind of cancer do you have? what treatment have you already had? when were you diagnosed? how are you finding the treatments here? how did you find out about the clinic? what does your doctor think about you being here?" which is the standard small talk here. These topics of course can be very interesting and bonding, but sometimes - especially after so many visits - I just can't face telling my own story again and summoning interest in other people's, so it was wonderful to be able to bypass all that and not have to put up a sociable front. (By the end I did get to know some new people, but it was a relief not having to do so straight away.)


I took it very easy (especially compared to last time, when I had a constant list of things to do), and instead went for walks, read books, watched DVDs on my laptop, and slept for hours every night. At the weekend I asked for the needle to be taken out of my port so that I could go to the mineral baths for a swim (it's usually left in for the whole stay, so that infusions can be given, and blood taken, easily, but it has to be kept dry), and I spent a lovely relaxing afternoon in the warm salty water. I also made regular circuits of the parks, playing around with my camera and experimenting with trying to catch the colours and the play of light.

The chemo procedure in the middle went fine: they had some problems cauterising the wound so I had to wait 4 hours instead of the usual 3 to make sure it had clotted properly (as the tube is inserted into an artery, any bleeding afterwards could be very serious), but I felt much better than last time when I'd had some inflammation around the chemo site afterwards. Having feedback from the scans is nerve-racking every time, but to my relief things seem to be stable still. The surgeon is pleased, and has agreed we can leave it for a slightly longer gap next time, so I don't need to go back until early July - fantastic news!

As always, I felt a bit tired for a few days afterwards, and I also realised that my sense of taste is temporarily affected by the chemo - it's quite subtle, but I've noticed how, for several days after each procedure, despite feeling hungry I have no motivation for food. I'd thought it was just that by that stage of the visit I was getting fed up of clinic food (which is quite bland, and not always appetising), but this time I realised that actually my taste buds are a bit dulled, taking the enjoyment out of eating and making the process very unappealing. However, it wears off after a few days - and in fact, going out for dinner at a local restaurant one evening helped enormously, so maybe it is partly psychological after all!

The weather was mixed, sometimes chilly and grey, once swelteringly hot and culminating in a massive thunderstorm, but there were a few pockets of properly warm sunshine, which I made the most of - there's something so blissful about lying in the sun with your eyes closed, with the sound of birdsong and the smell of freshly-mown grass. Cliches I know, but still very idyllic, especially for a city girl! 

TRIP TO HEIDELBERG...

Although staying at the clinic can be very positive and supportive, at the same time I dread going. It seems to exist in a little world of its own, and although it's not unpleasant in itself, re-entering it often feels very challenging. I guess it's because it involves engaging with cancer, acknowledging the reality of my situation, and being back in the role of a patient. Also, while many people I've met there are doing extremely well and having great results, others are going through tougher times, and from time to time I hear of people having died. Of course that's inevitable when socialising with people with cancer, but it's distressing, and chilling, and it can take a lot of bracing myself to go back into that world. 


So turning my clinic visits into an opportunity to visit new places in Germany makes a big difference to how I feel about going back. My friend Sharon offered to come away for a weekend before I started my next stay at the clinic, and we decided to go to Heidelberg, a beautiful and historic town about an hour south of Frankfurt. The weather wasn't great but we walked for hours exploring the old town and the impressive Schloss (castle), along with plenty of cafe stops, and dinner at a restaurant serving over 100 varieties of schnitzel - impressive by any standards! 

The Schloss, from a square in the old town

View of the old town from the Schloss

Enjoying cafe life despite the rain!

I found the town charming and laidback, and the architecture was fantastic - wonderful fairytale turrets and spires everywhere.

As well as being lovely to spend some time with Sharon, having a weekend away was a very welcome diversion between the funeral and going back to the clinic, and I felt much better for it. 

APRIL RAINCLOUDS

Health-wise I'm glad to say I've remained well, but it's been quite an intense and difficult month. Many of you, though not all, will know that my eldest nephew Robbie was diagnosed at 17 months old with a very rare neurodegenerative condition, Infantile Batten Disease, which is always fatal. It left him profoundly disabled, and from the age of 7 his round-the-clock nursing needs meant that he had to be looked after in a hospice, but he was very much part of the family and we visited him very regularly. When he was diagnosed he wasn't expected to survive beyond the age of 5, but he was amazingly resilient and we were fortunate to have had considerably longer with him in our lives than we expected. Sadly, through this spring he deteriorated, and he died at the end of April, aged 12. Although we'd known that this time would come, it was still very hard to lose him, but my sister Belinda and her family (they have 2 younger sons now aged 10 and 5) organised a very moving and beautiful funeral service. When I was diagnosed with cancer I was very worried that I might die before Robbie, and not be around to support my sister, brother-in-law and nephews when his life ended. So I'm extremely grateful and humbled that I'm still here, and that I was able to be part of marking his short but immensely important life with us all.

Belinda and I with Robbie and Eddie in 2005

With Robbie, David and Eddie in 2007

Throughout April, knowing that this was imminent, it was sometimes frustrating to have a number of immoveable deadlines (though at other times it was good to have distractions). I spent a lot of time finishing my distance learning course and writing the assignment, and I also had a fair amount of preparation to do for an orchestra concert (both administrative, and my own personal practice). I part-own a rental flat with my sisters, and as we had a change of tenants recently we took the opportunity to get some maintenance and decorating work done. When I was working full-time I put much less time into the flat than my sisters did, so it was good to be able to redress the balance by sharing the load more equally with my sister Annabel, but of course it needed to be done to a schedule and (as ever) took more time than I'd anticipated.


At the end of the month was my birthday, and although I was happy to celebrate just in a low-key way with a few close friends, it still felt a very significant milestone. I hadn't really expected to reach my birthday in 2011, let alone 2012, and while I didn't have much time to think consciously about it, I was aware of feeling a bit emotional about it. I often feel as though I ought to set aside space to analyse and process my feelings, and to reflect on my life in some profound way, but in fact I mostly tend to avoid thinking too deeply, finding it easier to focus on day-to-day tasks. But perhaps that's no bad thing.

EASTER SNOW

I spent another week skiing at Easter, back in Val d'Isere - in some ways it feels very extravagant to take holidays when I'm not working, but on the other hand I'm very conscious that I don't know how things will be for me by next winter. I'm extremely lucky to feel so well, and to have a reasonable amount of energy, so it seems important to make the most of that while I can. Plus I've never had too much trouble justifying ski holidays to myself! - they're such a tonic, and although it did take a bit out of me, it was a wonderful break. One of the things I love about skiing is that you're completely living in the moment: it's totally absorbing and leaves no space for worrying, thinking, planning, or existential angst. It also felt good being so aware of my body in a positive way (appreciating its strength and coordination) rather than thinking of it as a source of concern, fear or frustration.

I went with a friend from the orchestra, Allie, and although, as before, the other skiers in the chalet were very friendly and sociable, it was good fun having her company. Again, it was lovely not to talk or think about cancer for a whole week - it felt very nourishing and life-affirming - and to rediscover other parts of myself. 

With Allie

Allie and fellow skier Rebecca at a coffee stop

Since my diagnosis I've tended to avoid meeting new people because talking about the cancer leaves people shocked and embarrassed (and incredulous because I don't look ill), but it's not easy to know what to say instead, unless I lie outright. However, on this trip I experimented with admitting that I'm not working at the moment, but explaining it in terms of having outgrown my job and taking some time out to study and overhaul the flat and work out where I go from here, rather than mentioning health reasons (which risks people asking more) - saying nothing that's not true, but not giving the whole truth. It's interesting to experiment with the different ways you can construct a story, and the differing effects that has both on the hearer and on me, but I also found it a relief to socialise in an environment where work isn't the main focus of conversation - skiing provides endless discussion, and an opportunity to feel "normal" again.

La Folie Douce - the ultimate apres-ski venue

.... and more apres-ski with others from the chalet

Weather-wise we had mixed conditions - the very warm weather meant slushy snow on the lower runs, but very pleasant lunch stops sitting out in the sunshine, and there was a bit of snow mid-week which gave us some fantastic and exhilarating skiing, and dramatic conditions.

Fresh snow on the glacier as the cloud burns off

Allie, with snow clouds rolling in

Route back down to Val

Skiing in and out of the cloud