Happy New Year!

I love Christmas and New Year, and in my family it has always been a time for traditions. Over time we've all evolved our own and we've tended to eat and drink particular things on particular days from Christmas Eve to New Year's Day. The settled traditions worked well when there were a few of us doing the cooking, eating, drinking and clearing, but in recent years the pattern has needed some tweaking. That in turn has led to some new traditions.

Ten years ago I'd leave as much as possible to the very last moment - and that was part of the excitement for me. I enjoyed the build up through Advent and didn't want Christmas itself to start too soon or, come to think of it, to finish too early! But with (sequentially) the illness and death of my father, my mother having a stroke and then losing her sight and then my own treatment for breast cancer, I have had far more to do and much less energy for doing it. Moving to the Land of New Normal has meant that new traditions have sprung up and continue to do so.

For a start, planning now starts much earlier and these days I have most of the Christmas cards made by mid November. I now buy rather than make the door wreath and Christmas cake, as well as the brandy butter. This year, in a further energy saving drive, I bought disposable foil roasting trays to avoid some of the washing up.  Although none of these would take much energy to do myself, taken together they make a difference and I have finally come to accept that I can't do it all. I have decided that there are some things I really love doing and I want to ensure that I have the energy for these, while others I am now prepared to buy in.

The food has also been adapted to take account of fewer people eating and drinking it. This year we had one day when supper was the poultry cold cuts and the main meal was a traditional afternoon tea! The major change will be to New Year's Day dinner. In the past this was a roast of some sort - possibly poultry or perhaps beef. This year we have decided to have salmon; a much lighter meal and one that won't require me to "do something" with the leftovers. And, as salmon is a firm favourite in my family, I can see that this could well be the start of a new tradition.

It is nearly time to pour a glass of something and settle down to another tradition by popping the 1984 ROH production of Die Fledermaus into the video!

A very Happy New Year to all.

Positive (and negative) Pink

As Pink October draws to a close for another year, I head into my anniversary season and the reflections this brings.  It was four years ago today that I learned that almost certainly I had breast cancer and this was duly confirmed a week later. On a happier note, this blog had its second birthday on 20th October.

Dealing with a diagnosis of and treatment for breast cancer is a very personal thing and people deal with it in different ways. I suspect that who we are, our approach to and experiences in life and how we experienced and got through diagnosis and treatment also affects our approach to Pink October.  And this includes where we live - see a recent blog post by my friend the Feisty Blue Gecko  http://feistybluegeckofightsback.wordpress.com/2012/10/25/different-shades-of-pink/

The same day on which I learned the sad news that Bernie Nolan has found out that the cancer has recurred and spread my Facebook timeline carried what I deem to be this year's most tacky Pink event/product - the £1 Tickled Pink Bingo Dabber.  I have spoken and written before about how I believe it is totally inappropriate for a breast cancer campaign to be named "tickled pink" and this is underlined when hearing of yet another person diagnosed with metastatic disease and who presumably was not tickled pink to hear the news.

My own take on socio-political issues means that I'm not someone who believes that the end necessarily justifies the means. Tacky and inappropriate is not sanitised merely by being associated with fund and/or awareness raising. Moreover there is no need to sink to this in order to have some fun while raising awareness and funds.

This year I went along to an event held by Europa Donna Malta for Breast Health Day. I arrived towards the end of the event but it was a day filled with fun activities including sessions of pilates and zumba together with demos of fencing and other sports. Alongside was an information display, literature to take away, opportunities to talk and the Guides assisted with fundraising.  There was an atmosphere of fun as well as the serious information giving and while I was there two young men on a balcony overlooking the square were dancing to the zumba music and applauding with enthusiasm.

I'd be far more enthusiastic about Pink October if more events were along the lines of this one than encouraging people to dress up in pink wigs or to attend tickled pink bingo.

So it is with some relief that I leave behind October and head towards the NCRI Conference in early November to hear of the research that is being done into all cancers, and which this year includes sessions on cancer in the developing world and improvements in palliative care.  For me, this is a much more encouraging type event to form the backdrop against which to head into my season of appointments, tests and results than all the October hype, although I will retain the fun of Breast Health Day in Valletta as an example of Positive Pink.

Late again

I did say that daily blog posts and photos were not going to be an option for me! My work, leisure and family commitments really do make it an impossibility.  However, I did want to post one last very ordinary photo of something for which I'm thankful, especially as it links neatly to the photo for last Monday.

Last week I posted a photo of the view while I had breakfast on Monday morning. Then I was away, staying at a beautiful wildlife reserve.  Here is the view I had while eating breakfast today:

It is the view from my office window (somewhat skewed as I was leaning out of said window, which doesn't open very far!). It is a multi-user building for third sector organisations and the "inside" offices overlook this beautiful peaceful courtyard. I usually leave for work early and eat breakfast when I arrive; I have to on bisphosphonate day anyway. 

Lots to be thankful for and to appreciate here. The blog post before last went through the difficulties and uncertainty I and others faced while we waited to find out whether or not we would keep our jobs and I am thankful to have emerged with an exciting and challenging position.  The whole team is grateful for offices in such a beautiful location; lovely views into courtyard or across the local countyside, red kites hunting overhead (or just loafing about in the trees!) and a lovely sweeping staircase that has us all imaging that we are wearing our finery.

Me, well at that time of the day I'm appreciating the conversations in the kitchen with tenants from other organisatiosn, the fact that the phone doesn't ring and that only the odd email pings in. I eat my breakfast, take my Aromasin and drink my coffee (there'll be another cup when T gets in and the day gets started properly). I catch up with odd tasks and prepare for the day ahead.

Onwards and upwards ...

Celebrating the Ordinary - if not the Normal!

A challenge has been set by Marie at Journeying Beyond Breast Cancer   to celebrate the ordinary by posting a daily photo of something for which we are grateful.  I know that this will not be practical for me; I just do not have the time to do this on a daily basis, but I will join in by posting when I do have time.

I'm going to start by posting some catch up images as over the Bank Holiday weekend I was away at a medieval living history event and was certainly grateful for all the fun we had in and out of public hours. Perhaps not exactly ordinary in the strict sense but certainly it fits the gratitude aspect ...

Day 1

There are several things in this image for which I was grateful. The first is that it wasn't raining - camping is so much easier when it isn't raining and especially medieval camping! Then there is the tent, which I had ordered just before diagnosis and which I picked up just after finishing radiotherapy. It gives me good space in which to work and live comfortably during an event. This weekend it went up swiftly and easily and it kept me warm and dry even through the torrential rain we had one night.  The main reason why I took this photograph though, is that it is the first time we used this firetray. Previously if we haven't had a fire as part of a demo, we have sat around other people's fires but this time we had a small firetray of our own to sit around in the evening after the public had left the site, thanks to Aidan. There is something special about sitting around even a small fire, chatting as it gets dark. It leads onto another thing for which I'm grateful and that is the company of the friends and neighbours alongside whom we worked during the day and with whom we socialised during the evening - and here symbolised by Aidan. There is a wonderful community of artisans and demonstrators.

Day 2

I'm cheating with the Day 2 image. This particular event is an annual one and this photo wasn't taken this year. It isn't very easy to take photos during an event because you can't be wandering round in medieval kit and with a camera! So this was taken a couple of years ago at the same event by a friend to whom I'd given my camera and instructions to take photos for me.  During the event that year the blacksmith made me a lovely hook the sits around the central pole of my tent and on which I can hang the medieval lantern that gives me light at night and which gives my tent a lovely cosy feel to it. Lots more to be grateful for here; John who took the photos for me, the hook made by Wayne the blacksmith and especially the lantern. That lantern was made by another member of our little community and who sadly died from bowel cancer earlier this year, so it is now very precious.

Day 3

I took this on Monday morning. It is the view I had while sitting outside my tent eating my breakfast. One of the lovely things about taking part in such events is being able to stay in such beautiful places and this site, with its lakes, trees and wildlife, is one of the highlights.

Day 4

And here is the final image from the weekend. The event is over; it didn't rain while we were taking down the tents, the car is unpacked, washing done and there is now a satisfying line full of clean white linen drying. Much as I love the lingering smell of woodsmoke in my hair and clothing, it is good to have a shower and get the washing done!

Truly a weekend for which I am grateful in so many ways.

More New Than Normal

It has been ages since I last wrote anything here - or in my handwritten diary. That is not because nothing has been happening, but rather because so much has happened.

Back in April, the organisation I was working for lost the contract to deliver the service and I, along with employees in other organisations, was transferred over to the organisation that won the contract to deliver all of the advocacy in the area.  We had been told that although we'd all be transferred they would be reorganising the way the whole service was delivered and that as a result they expected redundancies. At the same time, they won contracts in a neighbouring county and ran the redundancy consultations together, giving us all the opportunity to apply for jobs in either area.

In the event I emerged with my first choice of job - managing the service in the next county. It is exciting and challenging. I'm working flat out at the moment and loving it.

Prior to the transition I had been working long hours finishing up pieces of work and closing the office, early starts, late nights and whole weekends. Then the transfer happened and although we had work to do, it was a much reduced workload. What I wasn't prepared for was just how tiring I found this period.  I knew that living what was, in effect, a 2 month long job interview would be somewhat stressful but I was taken aback by the exhaustion.

I would arrive home at night a good hour earlier than I had been used to (and after having left home an hour later in the morning) and then find that I was so tired I would sleep for an hour or so almost as soon as I got home. My energy level was right back to where it had been three years ago when I had just finished radiotherapy. And in spite of my nap when I got home I was still sleeping at night as much as I had been before.  At first I thought it was because all the extra work I had been doing prior to the transfer was catching up with me, but after a week or so I realised that there was much more to it than that.

I am now back working long hours but find that my energy levels are back to where they were earlier in the year. It has brought home to me that these days the weak place in my body when I am under stress is my energy level and my need for more sleep.

I shouldn't have been surprised; it has happened to so many other people dwelling here in the Land of New Normal. But it caught me unawares and I couldn't quite believe just how tired I could be when doing comparatively so much less than I had before.

What a Difference a Year Makes

The other day I arrived home to a letter with the distinctive blue UCL franking mark; the type of envelope in which results of scans and blood tests for the ovarian cancer screening study used to arrive.

This time last year seeing one of these envelopes lying on the doormat caused more than a moment of anxiety. The result may, or indeed may not, have been reassuring but always it was preceded by days of apprehension, anxiety when seeing it had arrived and a tense moment when opening the envelope and pulling out the letter.

Now, with the study over, my last test this time last year and no results outstanding, there was no anxiety on seeing the envelope. Just an element of curiosity followed by pleasure when I found that it contained details of a forthcoming event I plan to attend.

What a difference a year makes.

Bring on the Biomarkers!

I have pinched this title from a slide shown by Charlie Swanton at the First London Cancer Breast Study Day earlier this week! He was one of about a dozen speakers and his session was on a personalised approach to breast cancer treatment. Back to last year's theme of stratified medicine.

He was making the point that predicting drug response and the whole issue of multi-drug resistance are some of the challenges of the personalised approach. The genomics revolution makes it possible to make treatment or trial eligibility decisions fairly quickly based on sequencing from a single biopsy sample. But there is a question as to whether this is the best approach.

Looking at mutations found in samples from primary and secondary tumours shows that while some are ubiquitous, many are not; in fact, the majority are not. Intra-tumour heterogeneity means that drug response can't always be predicted from the sequencing of a single sample.

All this, he suggested, means that the traditional model of linear evolution of cancer is not helpful. Instead, tumours and their evolution are more like trees with branches going off in different directions and then themselves branching. Some tumour-trees have long trunks, while in others the branching starts much lower down. This goes some way to explaining why sometimes we don't see the expected response to a particular drug.

Another reason why stratified medicine is so important.

The Light and The Dark

A major difficulty with life here in the Land of New Normal is that even while I'm counting out my reasons to be cheerful there comes difficult news.

Over the last few weeks we have lost two of our international bloggers and, more recently and closer to home, one of the North East girls to this horrible disease.  And still close to home there has been bad news for a couple more.

Life seems somehow sharper here. The sadness surrounding the losses and grim news is painfully deep. But the breath-taking beauty of a morning drive past the diamond-sparkly frost-on-snow fields, hedges and trees the weekend before last was certainly heightened. The friendships that we form in this sisterhood that was thrust upon us are precious and life-giving, but when those very friends are taken from us the grief is profound.

Reasons to be Cheerful

Throughout my life, as well as keeping a somewhat sporadic journal, I have made scrapbooks of significant projects and events.  It was therefore no surprise that after the diagnosis of breast cancer I was collecting relevant photos and quotations as well as scribbling away in my journal. In January 2010 I assembled my Year 1 scrapbook and this time last year was preparing the next one. Now I am thinking about and reviewing Year 3 and it is a cathartic process.

These are not really scrapbooks in the modern sense with beautifully laid out decorative pages (although thanks to one of my Storm Rider friends I'm getting there), but they are a combination of journal extracts, photos and mementos of the things I've done during the year. At the end of the one for Year 1 I noted the number of miles I travelled for treatment and the time I spent at medical appointments. It made interesting reading and was useful in providing one of the consultants at our breast unit with ammunition for his campaign to make radiotherapy available more locally.

Year 2 was complicated by the genetics referral and participation in the screening study. There was a slight shift in the way time was spent. In Year 1, once I had surgery behind me I had a large number of shortish treatments and consultations with lengthy waits in late running clinics, while Year 2 saw lengthy appointments with genetic counsellor and study nurse in clinics that generally ran to time. Cancer is certainly a time-consuming business, even when things are going well!

Looking at last year's appointments I can see that things have settled down considerably and hopefully will continue that way now that the study is over. The Year 3 scrapbook will have far more about holidays, family and friends and leisure than it will directly about cancer. Of course, cancer issues (arm/shoulder problems; fatigue; joint, muscle and bone problems, etc.) are still very much live and form part of everyday life but things have taken a different turn. It is now much more about integrating long-term effects and using the experience positively.

The most important positive aspect is the circle of support in the form of the Storm Riders and which is celebrated in the quilt I'm working on. We still have regular contact and are there for each other as difficult situations arise. Just as importantly, we still meet in real and virtual spheres for fun and everyday chat as well as for support.

Another positive thing for me is that if I really do want to do something I am now much less likely to put it off than I used to do. The obvious example is that I have found time (and energy) for curling.

I tend to tolerate less aggravation in my life these days so I'm more reluctant than I was to go along with a course of action that although possibly useful will cause me a headache. It isn't about avoiding hard work and conflict; it is more about ensuring that the benefits are worth the effort. I'm much more aware of looking after my health, both physically and psychologically.

I am definitely not one of those people who say that cancer has brought them so much that is life-enhancing that if they could by magic re-order the past they would still choose to have cancer. I wouldn't choose to have cancer. However, as the fact is that I can't re-order the past, I may as well take from the experience whatever positive aspects I can.

There are some consequences that do provide me with reasons to be cheerful. The most important of these are my changed priorities and the friends I have made as a result, and the strong bonds we share. It may be a club that none of us actually wanted to join but, once compulsorily enrolled, we certainly know how to make the best of it.