Who Needs a Pink Wig ...

Well, we're half way through October and once again I'm trying to avoid the pictures of people wearing lurid pink wigs and inane grins. Pictures that all too frequently are put out by organisations who really ought to know better.  Also, once again, I'm trying to focus instead on the more appealing cancer research agenda - and this year I have a very positive experience on which to reflect.

About a month ago I was fortunate to be able to participate in the first running of a new week long residential course of science for patient advocates. Called VOICE (Vision On Information Confidence & Engagement), this course was developed by a collaboration between the charity Independent Cancer Patients' Voice and Barts Cancer Institute of Queen Mary College, University of London.

The mornings were spent in a series of lectures covering cell and cancer cell biology, different types of cancer, biomarkers, genetics, and clinical trials. The afternoons were spent in the laboratory, cementing and putting into practice what we were learning, understanding the techniques that underpin research, and seeing tissue being processed. Throughout the course, in addition to our lecturers, we were supported by a group of mentors drawn from the Institute's young researchers (and who made us cakes and biscuits!) Evenings were divided between guest lectures and social time mixing with our lecturers and mentors, plus the odd bit of homework and revision.

It was an ambitious, challenging and highly satisfying week and I think we all came away having learnt much and ready to put our learning into effect as we sit on trials management groups and steering committees, comment on drafts and proposals, and provide a patient perspective at a host of events and for a host of organisations.

The course is now being evaluated and the practical lessons learnt will help shape the next course.

The generosity of the staff and researchers was quite humbling and, in addition to the new knowledge (and yes, the Confidence of the course title), I have taken away the infectious and encouraging enthusiasm of our mentors. Not only did they answer our questions, but the work they are doing is our hope for the future -

who needs a pink wig when you have a Gilson pipette????

http://www.youtube.com/watch?v=fDF7s4PYQbg

Thanks to J. Garth for the photographs of the event

What is Survival?

Quite a lot has happened since my last post.  This has included the death of my brother-in-law from a combination of bladder cancer and a heart condition, and another work re-organisation and redundancy consultation (which I survived). But what is really occupying my mind today is the meaning, in Cancer-World, of the term "survival".

Three pieces of news have struck me this last week, and they are:

1. The prediction form Macmillan that in 2020 almost half the population of the UK will have a cancer diagnosis in their lifetime, but that 40% will "survive".

2. The death of Henry Cecil, race trainer.

3. The death of BBC broadcaster Rory Morrison.

Cecil was aged 70 and died of stomach cancer diagnosed in 2006, while Morrison was aged 48 and died of a lymphoma originally diagnosed in 2004.

So both of these men survived the five years that is all too often used as a bench mark for survival. Yet who could doubt that these men, and remember that Morrison was aged 48, died of cancer. Can we really say that they "survived" this disease?

As more modern treatments push back the boundaries of disease-free survival, we could be in danger of a public perception based on 5 year survival statistics that the battle, at least in some cancers, is almost won. It is true that more effective treatments combined, in some cases, with the possibility of earlier diagnoses, do mean that there are more "cures" (not a word I really like because the reality tends to be less simplistic) or at least, the staving off of the evil day to a time beyond that when other issues intervene. It is true that some people really are cured and won't see a return of the disease, and this is a wonderful advance. But for many more it is simply an extension of the evil day when disease "returns". I'm sure that if we were to ask someone what they would consider as survival it would not include dying of the disease nine years later, especially if that meant dying at age 48.

So while I am grateful for those advances that can put off that evil day, I know that there is still much work to be done before we can really say in any meaningful way that 40% of people diagnosed with cancer will survive it.

After all, I don't think I will say that being alive at age 56 means I've survived...

Tears and Laughter

In 2008/9, as I was going through treatment, I met and formed close bonds with a group of women going through the same thing at the same time. We'd 'meet' online most days to support each other and work through the complexities of what was happening.  Four years later the group is as strong as it ever was and we are still in regular contact.

For a while, things have been a bit difficult again.  A number of us have been, and still are, dealing with  cancer-related health issues and there have been other trials and tribulations.  Some of us have lost more friends and colleagues to this disease recently and the scares have been coming thick and fast.  At the same time, we have now picked up our regular lives with work and family commitments plus all the fun things in life.

A few weeks ago that sparked a thoughtful discussion about our feelings.  One minute we may be mourning someone we'd come to care for and know well, while the next we are sharing details of happy days out or a meal with friends.  Reconciling the paradox without feeling guilty isn't always easy but, especially when the person we mourn was someone with a great zest for life, enjoying the fun things in our own lives seems a fitting way of honouring them.

I have been reminded of that discussion this weekend as I met, at an historical market, another group of friends who have supported me.  In years gone by one of the people I'd have seen there was Gerry; this time was the final selling of his remaining stock. Although I shed a few tears I also laughed and smiled as we recalled some of the fun times we'd all had at events.  Gerry was certainly one of those people who had a great zest for life.

Of course, this situation is not restricted to those of us who are living with and/or beyond a potentially life-threatening illness.  Joy and tragedy live side by side for most people at some point.  However, for those of us here in the Land of New Normal the contrast can be that bit sharper.  We know that life is precious and most of us have resolved to live it to the full, so our pleasures and relationships can be a bit more exhilarating and special. We have formed close bonds with others in a similar situation, so when we are concerned for them we tend to be very concerned indeed; and when we lose one of them, the loss hits us hard.

It feels important to acknowledge this and be honest about our feelings, which does happen in that group of us who first came together online in 2008/9.  When one person is happy and enjoying life, the rest are happy for her.  When someone is concerned, frightened or sad, the others are there to assure her of our love and support. And we can cope with both occurring at the same time.

So provided we don't all fall into Black Canyon at the same time, there will be someone to guide us through the difficult times.  Come to think of it, even if we do all go over the edge together, one of us will have a rope while another finds she has a bag of gingerbread women and yet another will have a first aid kit.  Moreover, it won't be long before someone starts a sing-song.

And, given the hand we're playing, what more can you ask?

Good for height and half a centimetre post

Over the weekend I was looking back over my journal entries for the time I was having radiotherapy (hence the title of this post!) and reflecting on what I had written.  The highs and the lows; the frustrations and the entertaining moments; the words of wisdom and the words of encouragement from friends old and new.

So here are a selection of my thoughts at that time.


The daffodils are out in the Tabulae planter; a lovely cheerful sight as I leave the house each day.

Sat around in the clinic for ages waiting to see the registrar only to discover that he thinks the HER2 test result is sitting in a file at the other hospital!


I wept through the set-up today.


Lovely aromatherapy session with A - rosemary and neroli.

"Don't feel guilty about what you can't or don't manage to do", said T to me as we said goodbye at the Support Centre [at the end of my radiotherapy treatment].



I felt they just couldn't have cared less about how I was feeling.


... realised that we'd all been dredging up our 'A' Level physics in order to understand how a linear accelerator works!

From the waiting room we watched a couple of porters spend ages loading up a trolley with chairs balanced in a precarious tower and the pushing it towards the door, only to discover (as we'd all anticipated and suggested) that the stack was too tall to clear the doorframe!


I recalled how I'd had the support and encouragement of friends old and new.  In particular I have been remembering three who sadly are no longer with us.

Cat, Julie and I were part of a thread on the Breast Cancer Care Forum and we were all having rads at the same time.  I have written here before about Cat, and Julie died at the end of last year.

The other, Gerry, is a friend who at the time was healthy but who over a year later was diagnosed with Stage 4 bowel cancer.  He died last April and I plan to be remembering him with some friends over the coming weekend.


The planter is still at my front door, the daffodils are just about out again and I'm eagerly anticipating their cheerful sight.

Reflections on a Small World

A few weeks ago my old school friend the Feisty Blue Gecko posted about coincidence and recounted how she had met, at a work meeting in Myanmar, someone with whom she used to travel on the school bus. The Friday before last I had a similar, if slightly less dramatic, experience.

I had gone to an event at London Olympia's exhibition halls.  It was fairly busy and I was having a late lunch sat at a small table in the corner of the Hall. A man came up and, in the soft Scottish accent mentioned by FBG, asked if the seat opposite me was taken.  It wasn't and he sat down. After a while he leant towards me and addressed me by name in a slightly (but only slightly) hesitant tone.  It was the chap who had lived next door to me in Perthshire when I was growing up!  We hadn't seen each other for about 25 years and both now live in the Home Counties. So we had a good natter catching up on what we and our respective families are doing these days.

I would not normally be at an event on a weekday, especially one like this that carried on over the weekend. However, I have annual leave to use up before the end of March, so I thought that I may as well use a day for this.

I find such serendipitous meetings all the more pleasing for being unexpected and couldn't wait to relay this one to other members of my family.

And while the FBG and I were in the school orchestra together, her bus companion was in my year.

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.