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.

Another Landmark

For the first time since November 2008 I have no letters in the ‘hospital appointments’ file! This won’t last long because within about a week I’ll receive the appointment for this time next year, but it still feels like a hard-earned freedom. A far cry from the times last year when there were at least half a dozen upcoming appointment letters in the file.

The empty file is the result of my check-up this week. The report on my mammogram said that  “only post-treatment changes” showed up and the examination revealed no unexpected problems.  So now I can move to a single annual check-up and mammogram. First it was three monthly, then four, this year it has been two appointments. I still have open access in between appointments if necessary, which gives me a safety net(physical and psychological) should I need one. 


My clinic appointment was for 4.10pm and the clinic was, it goes without saying, running late. A sharp contrast with mammogram appointments which seem to run to time and if you turn up early they will often see you ahead of time. Expecting to wait, I’d taken an absorbing book with me but then had a chat with someone I’d seen in the same clinic last year (worryingly her appointment time was an hour before mine) and discussed whether or not we dared turn up late based on experience – the answer was “no”,  just in case they were running to time and we were then pushed to the end of the day. I also spent some time thinking about the women I’ve met both in person and virtually over the whole BC thing.


It was wonderful to hear good news and until I did, I don’t think I had really realised just how stressed I’d been about it.  Perhaps it was that time in the waiting room where the stress built; at the very least it made it much worse. 


I seem to find planning ahead difficult in the few weeks between the mammogram and the rest of the check-up.  In the first year I found any planning ahead difficult. Year Two was rather disrupted by the genetics and ovarian screening study, not to mention getting my arm/shoulder movement back, and was more about planning around so many appointments than anything else. Generally this year has felt more relaxed, so when this autumn the Storm Riders were planning for a November 2012 get together, I didn’t think twice about it. I didn’t fully realise the significance at the time; it was only last week when I was having difficulty making plans for early January on the basis of “what if …” that I remembered that only weeks before I’d been planning for a year ahead. 


So here I am, entering another year post-diagnosis and having taken another step forward. Okay, for the next few years the end of November and early December are probably not going to be the best time for planning ahead, but outside that window it all looks more promising. Fatigue is still an issue and I have problems with joints, there are other medication side effects, BUT I am feeling much better all round than I did a year ago. I even noticed while curling the other week that I seem to have regained a bit of my (admittedly never good) sense of balance and have become used to the difference in the left/right weight distribution.  


As I reach this three year mark with no evidence of disease (our dear friend NED) I am very aware that some of those I’ve met going through this have not been so fortunate. Some are dealing with recurrence, second primaries or metastatic disease. And it goes without saying that Cat, who died only a few months ago, is very much on my mind this week, together with her family. She was a great support when we did radiotherapy together and I feel that in some way I owe it to her, and to so many others, not to take life for granted but to get on with living it to the full here in the Land of New Normal, whatever this land throws at me.
Carpe Diem!