FESTIVE GREETINGS!

I guess this is my version of the "round robin" newsletter - something I never thought I'd do! - although it's in no way a summary of the year, just an update on the last few months. In spite of the relentless negativity of my previous post, alongside the tough patches I've also had some really enjoyable times during this chemo (and I've put in lots of cheery photos to prove it!). Culturally, I've gone to a couple of great exhibitions, including the Wildlife Photographer of the Year and an Ansel Adams retrospective (followed by hanging out at the museum cafes!); I had a lovely evening seeing a friend who I have sporadic violin lessons with perform a wonderful baroque programme at the Wigmore Hall; and with friends I've discovered or re-explored a few  of London's wonderful parks. 

Reflective sculpture in Holland Park

The Japanese Garden in Holland Park 

Autumn colours in St James' Park

I've had some great times with family, one of which was taking my nieces for a riding lesson as their birthday present - a hobby which I adored in my early teens and which it's a real pleasure to see them enjoy too. (Sorry for the poor picture quality - my mobile phone is an ancient model only suited to, um, making phone calls.)

Frederika (12)

Ingrid (7)

Last week I went ice-skating at Somerset House with my sisters, nieces and nephews, which was great fun (and I was delighted to find I had the stamina to skate the full hour, albeit with lots of chatting). My cousin Amanda joined us - being pregnant, as a non-participating cheerleader and official photographer.

Me with my sister Annabel (back left), mother of Frederika and Ingrid,
and Belinda (second from left), mother of Eddie (11) and David (6)

Me and Frederika

With our cousin Amanda, third from right

I've also had the pleasure of meeting several friends' babies. A few years ago I found it quite poignant to spend time with babies, as I'd always assumed I would have children myself at some point, yet it never happened for me. Now I'm much more comfortable about it - for a start, having a family to look after would have made my current situation much more challenging - and, because so many people I've met through the cancer world have died (around 20 at last count), I find it really moving, inspiring and life-affirming to see, and hold, and marvel at, the preciousness of new life. 

With Tommy, the son of my friend Maria from psychology training

Etta with her mum Mo, a friend through the orchestra

With Austin, the son of work colleagues / friends Karen and Annette

Friends have been, as ever, been an invaluable source of support, and even when I've not been feeling great (or especially) it's been really important to have not only sympathetic ears but also the chance to be interested in other people's lives for a change. It's felt a real privilege to be able to support others through their own challenges and not always be leaning on them; it enables me to feel that despite coping with my own difficult times I still have something to offer - I've learnt that unless friendship is truly a two-way process it's easy to feel like nothing more than a burden and a worry for those you care about. More lightheartedly, it's wonderful having an array of people in my life who cheer me up and make me laugh (and, even more impressively, laugh at my jokes), as well as giving me the opportunity to have fun - after our December concert I recklessly stayed out till the early hours at a party (I'd almost forgotten what that's like!), and it was great to ignore for once what I "should" be doing for the sake of my health and to socialise like old times. 

In addition to my circle of close friends, since the summer I've caught up with several old friends I hadn't seen for a long time, including a friend from my teenage years in Brighton Youth Orchestra, one from my first years in London in the mid-90s who now lives in Grand Cayman, a Dutch friend who I first met backpacking in Tibet, and another from the wonderful big-group skiing holidays of my 20s. It's been lovely to reconnect with these people from the various different stages of my life, and to revisit those formative experiences and friendships. I feel very blessed to have so many people who care about me, and to be in touch still with so many who have shared significant (and fun!) stages of my life; it reminds me that the challenges I'm going through now are in no way the sum total of who I am or what my life means, and that's an incredibly important realisation.

I apologise for not sending any Christmas cards again this year - it seemed a good way to reduce the lists of "shoulds" in my head and conserve my energy - but I've been delighted to receive news and good wishes from so many people in my life. Thank you to all who keep in contact, whether frequently or sporadically: I really appreciate you taking the initiative to stay in touch as I find it much easier to respond than to initiate communication. 

I'll be spending Christmas at my sister Annabel's, along with my dad and his wife Phoebe (my other sister Belinda will be with her in-laws). As an agnostic, the main significance of Christmas for me is closer to the pagan concept of celebrating light, warmth, love, joy and abundance during the darkest and coldest time of the year when it's hard to imagine the spring. This idea resonates particularly strongly with me at the moment, during the toughest few months I've had since my diagnosis and when there's no real end in sight: what better time to celebrate the simple pleasure of being alive right now, by sharing food, drink, gifts and time out from the worries of our everyday lives with those I love. Despite what I'm dealing with I still have much to be thankful for, and to treasure, and at the risk of sounding sentimental this feels an appropriate time of year to appreciate everything that's good in my life. 

Thank you all so much for reading this - sharing my ups and downs and supporting me in so many ways, including your thoughts, prayers and good wishes. I hope that all of you, wherever you'll be, and however and whatever you're celebrating, have a peaceful and joyful Christmas, and I wish you all possible health and happiness in 2013!

DARK WINTER DAYS

It's been nearly a month since I last updated this blog and a few people have contacted me to check I'm OK - sorry for the gap. Overall life isn't too bad with me, all things considered. The new chemo regimen is slightly easier to tolerate than the previous one, and there have been no dramatic, disfiguring, or dangerous side-effects (which certainly isn't always the case, so I try and keep things in perspective). 

However, I have to admit that I'm finding it quite tough going at the moment. The main effect from the chemo is on my gut, which varies from uncomfortable to painful most of the time and can get quite distended and tender. Lying flat, and using hot water bottles to ease the sensation of achiness, help to some extent, but it's rather wearing, and it can be hard to get comfortable at night (though I'm lucky that I sleep pretty well all the same). My appetite is a problem: I do get hungry, but find it difficult to face food, and quickly feel unpleasantly full. I'm learning to manage this by eating small amounts more frequently rather than trying to have proper meals (including carrying around snacks with me all the time, as if I was feeding a toddler), and by using meal replacement drinks when necessary to keep my energy up, but there's not really much pleasure in eating, and the planning and effort required to ensure I get enough fuel feels a constant daily chore, and that's pretty hard on morale. 

Fatigue is an issue on this treatment too, far more so than I've had before - I manage to do most of my usual things, but am really having to stop and rest in between, and tiredness hits me very suddenly. Walking is OK but standing (e.g. on busy tubes, or waiting in queues) is very wearying; and my mental energy and concentration is a bit limited too, so it can take a long time to get round to acting on good intentions (such as updating the blog). 

Other niggles from the chemo are that I feel the cold quite badly and have to wear multiple layers of clothes even indoors, and I never venture out without gloves otherwise I get tingling and pins and needles in my fingers even on relatively warm days. Of course that's not a huge hardship in itself, but it's a daily reminder that I'm more fragile at the moment, and that I have to think differently from in the past when I took pride in being hardy and strong and not "precious" about my body. I've also had mouth ulcers on and off (chemo affects all rapidly dividing cells, which includes the gut lining and mucous membranes such as the mouth), which doesn't make eating any more appealing. And - ominously - the last time I washed my hair a lot more than usual came out, leaving me dreading it thinning right out like it did in spring 2011. 

None of these things are horrendous or life-threatening, and I'm fully aware that many people have a much harder time on chemo than I'm having, but all the same the combination of them all makes day-to-day life feel rather a struggle. I've been busy socially, which is lovely, and a very good distraction from preoccupation with my gripes (pun fully intended), but I find it hard to get the right balance. When I'm with people I tend to rise to the occasion and act (and often feel) like my old self, but when I get home I'm often exhausted and worry that I've overdone things. Friends have been very good about coming to me or my part of town to save me extra travelling, but it's sobering to realise that even sitting and talking for a couple of hours takes it out of me. I try my best to accept that this is simply how things are at the moment, but there are days when I really miss being able to just plan and do what I want without questioning my strength, and not having to think about everything and gauge whether it's good for me or not.

Added to this, there have been some unpleasant things to deal with, including some very complex orchestra politics sparked off by our conductor walking out 10 days before our November concert. Feelings ran high about who should have done what to foresee or prevent this (and being on the committee I couldn't not be caught up in the accusations from both sides), plus it was very time-consuming (and at times emotionally draining) to reach a consensus on how to sort things out, find a replacement and make alternative arrangements for the rest of the year. So much for my determination to step back and do less....

I've also had a falling-out with my acupuncturist (or perhaps it would be more accurate to say that she had a falling-out with me). I'd been seeing her since very soon after I was diagnosed, and she did amazing treatments, way more powerful than any acupuncture I'd ever had before; but we always had a slightly uneasy relationship, and it came to a head with her behaving in a very unprofessional way, after which I knew I couldn't carry on being treated by her. I'm now researching other practitioners and feel quite positive about making a new start with someone else, but while it was going on it was all very unsettling and disturbing. Despite my capacity for bolshieness I hate there being bad feeling, and I rarely have confrontations with people - and if I do I generally try very hard to put things right - so having two incidents in two months where for various reasons there wasn't the opportunity to smooth things over or repair the relationships has been very uncomfortable and a real challenge for me.

OK, I know you want to know how I'm doing, but I think that's enough complaining for now!

So I'll post again before Christmas to summarise the good things (yes, there are some!) in a separate update, and thank you for bearing with me in my splurge of woes!