DOWNS AND UPS

Afternoon sunlight over a frozen lake in the park

As ever, the stay at the clinic has been a bit of a mixed bag. The prospect of repeated visits ad infinitum got me quite down at times – it’s funny, of course I’ve known since I was diagnosed 15 months ago that the cancer’s very unlikely to disappear, but with hindsight I think I coped by convincing myself that, however horrible, this was just a phase I had to get through, and that somewhere down the line my life would go back to normal. (Or, ideally, having glimpsed death and undergone the requisite amount of suffering, my life would be transformed and wonderful and I'd appreciate every minute as a gift from the universe. Hmm, no pressure there then!) Some kind of protective mechanism must kick in to allow you only to take in what you can bear to face at that point in time. I think what’s happening now is that it’s sinking in, in a new way, that this will probably shape the rest of my life, however long that might be.

So there was some readjusting going on, and it was hard work at times to drag myself out of self-pity, or weariness at the prospect of keeping having to do all this indefinitely. (As the Red Queen in "Through the Looking-Glass" said, "It takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!") However I also had some really lovely times with other patients and their support people (who somewhere down the line have become nicknamed “jockstraps”!). Whether it was deep conversations about facing our inner demons and making sense of why we’ve got cancer, or mealtime banter and joking, I felt enormously warmed by the connections I’ve made. Some of the people I’ve got to know well overlapped with me again - Hilary and her husband Arthur, Cathy and Dick from the US, Fiona from Scotland, John and Mary from Australia - and it was wonderful to cement those friendships and to share their company. Sadly it's unlikely that my schedule will coincide with theirs in the near future, which is a great shame, but I also met a number of other lovely people – the spirit of support seems to carry on despite the turnover. 

In addition Jenny and her husband Andy from Liverpool, who I met in January, are still at the clinic and have become a central part of clinic life. Jenny’s had a pretty rough time of things recently so when she couldn’t come down for meals we went to visit her instead. Her determination and courage are inspirational – it certainly helped me to get things in perspective. Her story's documented in Andy's blog at http://www.keepthefaith.org.uk/.

So there were some uplifting and precious times. A social highlight was going out for dinner at the nearby Kurhaus hotel – a much-needed change of scene and food – and we sampled a couple of the amazing cakes for dessert. 

Dinner with (left to right) Hilary, Andy, Lisa, Cathy, Dick and Arthur

The last couple of days warmed up (to a mere couple of degrees below freezing!) and there was a dusting of snow which brought a little magic to the village.

Main street of Bad Salzhausen

Cathy and Dick seeing me off as I left

Weathervane at the station

SOME TURBULENCE

I wasn't sure whether to write about this, but the last couple of weeks have been a bit of an emotional rollercoaster. I mentioned in the update post on 1st February that the Marsden team had looked at my January scans, and were pleased with my progress. In fact what they told me was that although there's still a sizeable mass (and a few smaller masses) in my liver, they thought that the tissue was mainly inactive (like, for example, scar tissue), because the dye used in the scan hadn't been taken up by the cells in the way you'd see if they were highly active (ie metabolising). Their opinion was that I shouldn't have any more chemoembolisations, and just have a follow-up scan in 3 months time.


It sounded like amazingly good news, but I couldn't quite understand it, since although there's been a small improvement over the last 6 months, it's what's described as "stable disease" (ie less than 25% change). For that reason I didn't fully let myself believe it, nor did I go into detail on the blog, waiting till I got more information before I broadcast it. (However, I did feel anxious about possibly losing the reassuring structure and support of the clinic, and worried that I wasn't appropriately thrilled, and I agonised about whether I was repressing my emotions, or deep down didn't really want to be better - you'd be surprised how much self-flagellation supposedly good news can bring!) However, I then got the reports from the Marsden radiologist, and those also stated "stable disease". So I rang the nurse specialist to find out why, in that case, the team had concluded that I shouldn't have any more treatment, and it turned out that - far from thinking that there's nothing left to treat - doing any more than 3 chemoebolisations hasn't been definitively proved to be of benefit, so they don't think there's any point in me having more treatment. Rather a difference!


Of course I discussed it with both Dr Herzog and Professor Vogl when I got here, and they both disagreed with the Marsden's view, saying that cells can appear dormant at a given timepoint, but it's dangerous to jump to the conclusion that they're dead or harmless. Dr Herzog had no doubt that if we stopped treating, the cancer would spread, and become harder to treat - he makes decisions on how cancer cells behave over time, not how they look on a scan. That makes sense to me, and although it's a more cautious interpretation of the scan, I much prefer that to the "Russian roulette" approach of stopping treatment just to see how whether / how quickly it grows back. I also trusted Dr Herzog's opinion because he's seen me regularly and has thought (and discussed with me) a lot about how the treatment's going, whereas there's no-one at the Marsden who's really got to know me so their conclusions are all based on technical data, and it doesn't really inspire confidence that they're looking at the whole picture (especially as they've also made a couple of fairly basic mistakes in previous reports, such as the date of my diagnosis and how many treatments I've had). So I'm following Dr Herzog's advice and we're continuing with the chemoembolisations - though we're leaving a 6-week gap this time to see if it remains stable, and if it does, gradually increase the time interval if we can. 


So all's still as before, nothing's changed, and in this game that's a very good result. But as you can imagine, I've been pretty gutted, having had that hope dangled in front of me that maybe it was going better than that. I was fairly angry with the Marsden at first, for recommending me to stop a treatment that's working when they've got nothing to offer me themselves, and I felt very mucked around emotionally. But I don't think they've done anything unprofessional - I used to think that scans are like photographs, a clear picture which you can accurately measure and quantify, but although some may be like that, mine definitely aren't, so it's all about the subjective (and highly skilled) art of interpretation. And the Marsden are guided by the research evidence from gold standard trials, so naturally their view will differ from doctors working pragmatically and experimentally and relying on their clinical judgement and intuition. Still, even though I didn't really fully believe it, of course I hoped, and it's pretty devastating to come back from that.


But come back from it I must, and I'm trying hard to look on the bright side - I'm so lucky to have a treatment which holds it stable, and although of course I want it miraculously cured, I also know that once cancer's metastasised it's all about stopping it progressing, rather than expecting to cure it. I'm extremely lucky that - for now - it's stable at a point where my day-to-day health and lifestyle isn't significantly limited by it. So that's what I'm aiming to feel grateful for: although I haven't let go of the hope for a miracle, I don't want it to mean I miss out on appreciating what's good about how things actually are right now. Plus, whatever scans look like, no-one can predict exactly what'll happen in the future, so although it's hard living with the uncertainty, it's something I just have to learn to adapt to. It's been good being around other patients, who understand that challenge only too well, and I've really appreciated the support and understanding I've had from those I've confided in.


As I said, I had mixed feelings about writing such personal things so publicly, but I know that I have a tendency to present myself as sorted and positive, so I wanted to be honest about what it's like emotionally and what I've been struggling with. It's hard to know what kind of detail to go into on this blog - as there aren't many comments I don't really know what people think when they read it (or exactly who's reading it), so I hope it doesn't feel like an inappropriate "splurge".


I'll do another post about the rest of the visit in a few days' time. Till then, some photos to finish off with (don't be fooled by the lack of snow, it hasn't risen above minus 7 since I got here!)

Frosty sunrise

Sunrise over the village

Winter sun

INTO THE FREEZE

My journey back to Germany today coincided with the news being full of "snow chaos plunges nation into travel misery" stories. I checked in online last night, only to find that my flight today had been cancelled (along with around 350 others from Heathrow) and I'd been transferred onto another, leaving a couple of hours earlier. Ominously, when I printed my boarding pass there was no seat number, so I planned to arrive early in case of a scrum for seats. I always used to catch transport by the skin of my teeth, but have got fed up of the unnecessary stress of not knowing till the last minute whether I'll make it, and these days I'm a bit more organised. So I left plenty of time for delays on the tube, and packed extra layers and food supplies in my hand luggage. At the German end I've taken to using the train from Frankfurt airport to the clinic rather than coming by taxi, and although there are 2 changes it doesn't take that much longer. However, the last leg, the local train, only runs once every 2 hours, so I was a bit concerned about missing my connection if there were any weather-related delays, and getting stranded.


But I'm glad to say it was all fine - the replacement flight was an hour late, and completely full, but I didn't have to punch anyone or burst into tears to get on it; and (of course) the trains in Germany were all running perfectly, in spite of it being minus 15 here (thank goodness for my skiing thermals). So I arrived in Bad Salzhausen, about 8 hours after leaving my flat, to bright moonlight and a wonderful clear starry night. It might not be worthy of a news story (or even a blog post, come to that!), but I'm happy to have bypassed the drama and to be safely in my cosy guesthouse.

PROGRESS UPDATE

These last few weeks I've been quite tired, and found it hard to shake off a cold, but overall I've been on pretty good form, and I feel very lucky with the medical care I've had. The Marsden did a great job of working out which chemotherapy drugs would be effective, and their systemic chemotherapy brought me back from a pretty serious situation. They do carry out chemoembolisation as well, but only for cancers where there's an evidence base for its efficacy, and since there's so little evidence for cancer of unknown primary I don't qualify for it. 


However, I'm in extremely good hands with Professor Vogl, who does the procedure at Frankfurt University Hospital, as he's at the cutting edge of new interventional techniques. (He's one of only 3 surgeons in the world who does chemoembolisation via the femoral artery not only for tumours in the liver but also tumours in the brain - pretty amazing stuff!) If you're interested, here's an recent article on his work (the imaging shown in the pictures isn't exactly the same as in my procedure but it gives you an idea): http://www.medical.siemens.com/siemens/it_IT/gg_ax_FBAs/files/brochures/Scientific_Articles/interventional_oncology_interview_prof_vogl.pdf

I also have a great deal of respect for Dr Herzog and his thoughtful, collaborative approach to treating people living with cancer. You may be interested in this link to a video interview with him, about 20 minutes long. The website it's on isn't one I use, and I'm not sure I agree with the title of the video - it doesn't seem at all an emotional interview to me - but it gives a very good sense of his philosophy:

http://cancer.maxawareness.com/members/cancer-clinics/germany/dr-herzog-hospital/emotional-interview-with-dr-herzog/

Since I started having treatment in Germany I've continued to have weekly blood tests at the Marsden, to check that my immune system isn't too affected by the chemoembolisation. The nurses at the Marsden are lovely and I rather enjoy the opportunity to catch up with them, including telling those who are interested about the other approaches I've been benefiting from. My blood counts were OK during most of my chemo in the UK, except once in March 2011 and then again in July when I was admitted onto the ward (both times I had a blood transfusion). However, since then I'm glad to say that the results have consistently been reasonably good. I'm slightly anaemic, but no more so than I've been all my adult life, and my white blood cells (part of the immune system) are a bit low from the chemo, but not a cause for concern. My tumour markers were never very high even at diagnosis (and therefore aren't much help in tracking progress), but they're all now within normal range, and my liver function tests are also back to normal. These results don't mean that the tumours have disappeared, but do suggest that they're less active or aggressive, which is very encouraging.


I hadn't seen a doctor at the Marsden since just after I was discharged from hospital last summer, but last week I had a review with one of the specialist registrars. (I've only seen the consultant once, for about 5 minutes just before starting chemo, and since then I've always seen registrars.) He fed back that the team had studied my last scan, which they reported shows a good response to treatment over the past 6 months of going to Germany, and they're very pleased with my progress. It's great having some confirmation of my improvement, and when I go back to Germany at the end of the week I'll discuss with Dr Herzog where we go from here in terms of the treatment plan. 


I don't have any pictures to accompany this post, so I've uploaded the results of a pointless but pleasant hour playing around with iPhoto's special effects!

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