Looking Back

It was four years ago today that I started radiotherapy.  I was reminded of it as I drove to work this morning with views across a beautiful snowy landscape, because it was also wintery weather then.

When I was in the thick of treatment I kept a journal but was not prepared publicly to share all my thoughts and feelings and therefore I was not blogging then. This evening I've looked back at what I wrote and I can pull out some strands that run through. In some ways, that first radiotherapy session sums up a few of the strands.

One of them was the camaraderie of the waiting rooms. We all admitted to irrational (and some rational fears) at times and we talked them through, sometimes laughing together and at others discussing how we might cope with this. On my first day there were 3 women there for their last sessions and they were very willing to share tips and be encouraging. Throughout treatment I always had a book with me but in fact rarely got much read as there was so much chatting.

Linked to this is the strand of support I found online at the Breast Cancer Care Forum. The encouragement, the sharing of information and tips and somewhere to express worries and doubts was probably the most useful thing in helping me through treatment.  Many of those I met there continue to be very important to me and although we have moved from the Forum and found another home we are still there for each other.

Another strand was the amount of time spent waiting.  It was always better at the very end of the day, because the staff wanted to get off home so patients were shifted from one machine to another to fill in gaps in the schedule. Unfortunately waiting for late running appointments was a feature throughout hospital based treatment is still a feature of follow up - although the appointments I had while in the study all ran to time.

Then there was the difficulty of trying to fit in working during treatment.  In theory this shouldn't have been a problem at this point because I'd requested treatment times at the end of the day, which would mean that I could go to work, on to the hospital for treatment in the late afternoon and then home. In practice it wasn't that easy.  Firstly the dozy registrar I'd seen had messed up the paperwork so my appointments were all originally dotted around earlier in the day. Fortunately the much more efficient radiographers managed to re-arrange most of them for me when I went for my planning appointment. And that was another feature - in general the radiographers were friendly, kind and efficient.

Even worse administratively was the way in which treatment times and clinic appointments were sometimes changed at the last moment - which happened that first day.  I'd got an appointment for 4pm and at 10.30am they phoned asking me to be there at 12.00 (and it was over an hour's drive away).  In the end a colleague covered a meeting for me and I got there - only to find that they were running over an hour late and I wasn't seen until nearly 1.30pm!


It has been interesting to look back at that first day partly because it summed up the experience quite neatly - the good and the difficult. Much has changed in the last four years, but the strength and support of other women dealing with the same or similar practical and emotional issues continues to this day and is something for which I was and am extremely grateful.

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.