Technology and the human factor

There we were, most of our staff crammed together in our largest meeting room for a presentation by one of the scientists whose research we support. The computer was fired up, the projector was on and the computer switched itself off. We can sequence the human genome but PowerPoint gets us every time. So everything was set up again and again the same problem – third time I went in search of our IT guru but sensible member of staff said that it looked like someone kicked the plug.......... and so it was. Human intervention removed we were ready to go.

Our mission is to beat breast cancer through supporting research and that goes beyond the research and also beyond publication in prestigious scientific journals so that other scientists can build on the work. It also extends to bringing that knowledge to the public – they give us 100 per cent of the money that supports the research so they are very much entitled to know how effective it is. Our team here is part of that public so they go along to research projects and from time to time the scientists come here to talk about what they are doing.

Survival is not enough

Over the past thirty years the number of women surviving breast cancer for ten years has increased by more than a third and many of those treated today could expect to survive longer than that. So thirty years ago the thought that the treatment would save your life but you might end up with debilitating enduring side effects years later just wasn’t much of an issue. It is now.

Dr Paul Symonds came from the University of Leicester to talk to us about the research that he and Dr George Tanteles are doing. The background is that on diagnosis of breast cancer a patient may be offered several forms of treatment including radiotherapy; in fact the majority of breast cancer patients receive this form of treatment which is used to destroy any breast cancer cells left behind after surgery and reduce the risk of local recurrence.

Radiotherapy is a very effective treatment for breast cancer but a small percentage of patients develop unpleasant side effects – sometimes well after treatment has finished and these effects are life-long. These can range from chronic pain to heart disease and at the moment we have no way of knowing which patients will be affected.

Paul and George believe that they have identified a genetic marker which could lead to a test to identify the risk of radiation side effects which then could play a part in determining treatment. If successful this could be a saliva or blood test and would be quite cheap to do. We are still a few years away from this but it is a step closer to surviving well – not just surviving.

If you would like to read the full paper on this study, it can be found on the British Journal of Cancer website (you have to subscribe to read it, or contact me).

The last ten days...

Sorry it’s all been a bit quiet in the last ten days or so. A busy time at work with nothing very much to report and a batch of outside meetings followed by a few days in Switzerland staying with friends in Lausanne. A lovely break, very relaxing but Switzerland is very expensive. Fortunately, they have a flat there so we were able to eat in quite a lot. As always seems to happen on holiday - you leave your holiday place in brilliant sunshine and come back home to rain.

This was my first holiday with my new bright shiny netbook. I am a bit of a news junkie and even more of a newspaper junkie, with only the prohibitive cost of British newspapers abroad stopping me from buying them every day. However, I realised two things on this holiday: not only could I get my news fix from the internet on my new toy but I am starting to get information from blogs rather than from newspapers.

Take the swine flu pandemic – I wish someone would. The newspaper and TV headlines were relentlessly depressing with lurid headlines all signifying the end is nigh. Companies stock-piling Tamiflu for employees and families, people buying – possibly counterfeit – drugs over the internet and call centres being set up to man the phones for the hundreds of thousands who will succumb. We have had a couple of suspected cases in the office which isn’t much fun for those concerned, and it is a concern that there might be an upswing in incidence and we will be short-staffed. A couple of years ago we had an epidemic of whatever the lurgy was and had over a third of the staff off sick. It happens!

So I don’t want you to think that we are ignoring the practical consequences of this - I know no more about viral illnesses than any of you so please don’t think I am talking with any authority – but please read NHS Blog Doctor for some perspective.

P.S. My grandchildren in Switzerland are taught at school to sneeze into their elbows rather than their hands – this was long before swine flu – to avoid spreading germs. Me – I take vitamin C at the first sign of anything – there is absolutely no evidence at all that it has any effect but it makes quite a nice drink.

My new bright shiny thing

Waiting in a café to meet my opposite number from Breast Cancer Care for breakfast. We meet up regularly to bring each other up to date on our respective organisations and also discuss any activities we are collaborating on at the moment. We participated in their excellent work on secondary breast cancer* (we supported a research project at Southampton University in collaboration with them looking at exactly this issue) and were part of the task force which was set up to address the very serious issues related to the support given to women whose breast cancer has returned. Have a look at their website if this is something that you are concerned about.

However, the reason for writing right now is somewhat trivial compared to the importance of the work both our organisations do. Of course I am not writing – I am typing on my new bright shiny thing – a netbook. This is very small, very light, pretty cheap and can do everything a grown-up computer can do. I have resisted having a laptop/portable computer, my arms are not strong enough to lug it around and the very light ones are too expensive, but when I am out and about the netbook would be so useful to have. Not only could I log onto files on my computer rather than printing things out for every meeting, but I could also type up notes on the spot.

My world of work encompasses an era before we had a computer on every desk. That was only twenty odd years ago. The first personal computer was the IBM PC and a wondrous invention it was. When I worked in the City in the 1980s we bought the second generation personal computer in 1984 which was the IBM PC XT. The cost was close to £8,000 and it had a whopping 128 KB of memory and a floppy disk drive – remember them? (The geeks out there can go to wiki to see the technical specs). When I left the City in the late 1980s the computer I bought to use to work from home on had one megabyte of memory and, as the person who helped me set it up said, “you will never use that much in a million years….”.

The advances in computer technology have not only changed the way many of us work, it has enabled medical research to process information in a way which was not even dreamed about only ten or fifteen years ago. We don’t forget that however smart, the technology is a tool, a very powerful tool, but still just a tool. It doesn’t replace human creativity, ingenuity and the ability to ask not only “why?” but “why not”. That’s the bit Breast Cancer Campaign supports.


*Secondary breast cancer occurs when breast cancer cells spread from the first, primary tumour in the breast to another distant part of your body via the bloodstream or lymphatic system.

To screen or not to screen

Breast screening is in the news again: at the same time as we see that deaths from breast cancer have reached the lowest point for nearly 30 years we also see a report which says that some women are being treated needlessly for breast cancer and this is due to over-diagnosis – largely due to the screening programme.

Some of the facts are simple but the consequences are less so. Over-diagnosis happens when a cancer grows so slowly or it stays the same or disappears so that the patient dies of other causes. As it is not possible to distinguish between dangerous and harmless breast cancers, treatment is offered for all detected cancers.

One of these is a condition called Ductal Carcinoma in Situ (DCIS). This is what is loosely referred to a pre-cancerous condition and until the screening programme it was often not diagnosed until it had spread or produced symptoms. It is clear that there are women with DCIS which will not progress, they will not have symptoms and they will die with it rather than of it. However, there are also women (we believe around 30–50 per cent) whose DCIS will progress into invasive breast cancer and could spread beyond the breast and, if untreated, lead to death.

For me it is quite simple: we cannot identify who falls into which group. So, for me personally, it is Russian roulette - do you spin the barrel and take a chance that you will be one of the lucky ones or do you go through the misery of treatment in case you are one of the unlucky ones.

DCIS is a complex area and Breast Cancer Campaign is funding research looking trying to understand why some cases of DCIS turn into invasive breast cancer and others don’t so that we can avoid unnecessary treatment in the future.

The screening programme is not a perfect tool but it is what we have until our research gives us something better and as long as women have the information to understand the risks and benefits it should be up to them to make their choice. I have been part of the screening programme for some time and I have never missed an appointment. I was also given the opportunity to take part in a clinical trial which is testing alternative forms of screening for ovarian cancer and I am doing that and – this may be too much information - have just received my letter to take part in the bowel cancer screening programme and will be doing that as well.

Annual staff conference

Had a really fabulous day on Wednesday which was our annual staff conference. It gives me a great opportunity to talk and work with people I don’t get to deal with. This sounds daft as we have an open plan office with only three private offices, including mine, which are all glass. So I can see everything and everyone but it isn’t the same - I know, I should get out of my office more.

We had a really stimulating presentation on the research that we support. It was so interesting looking at some of the achievements of our research over the past year, but also looking forward to some very exciting work which we will be launching in the next few months and we heard directly from one of the scientists involved in the project – watch this space.

We always have a slot to hear first hand from someone who has personal experience of breast cancer, which brings everyone back to earth about the real problems women face. This year we were very privileged to have our patron, Jenni Murray, talk quite frankly and sometimes a little shockingly about her own experience. Those of you who listen to Woman’s Hour and have read Jenni’s books or the various articles she has written about her own breast cancer experience, will be familiar with her experience over the past few years.

I was so pleased to hear her say that she detests the gladiatorial language that so many in the media use – “fighting” breast cancer “losing the battle” with breast cancer. As she so eloquently said – “if you die, did you not fight hard enough?” She also highlighted how many women, when diagnosed, ask what they did wrong for this to happen (apparently men don’t). The answer is – it isn’t a battle it’s a disease: you didn’t do anything wrong – it is a disease not a punishment! Rock on Jenni.

My role is to talk about the big picture – the finances, the strategy, operational performance, outcome of the staff survey (98% enjoy working for Campaign and the same percentage are proud to work for Campaign – me too!) and other important things. I do try and lighten the load a little with my own “very very serious” staff questionnaire. Some examples:

• Most unusual pet?
  Five snakes (one python, four corns), a bearded dragon and Tiggy the Tegu – all owned by one person.
  
• Chips, mash or roast?
  Roast – 45%; Chips – 39% and Mash – 16% and one indecisive individual who would like all three – preferably at the same time.
  
• Who would you most like to sit next to on a long plane journey?
  An empty seat in first class. If only….

Where are the scientists and the doctors?

Some interesting reading produced by a good friend of Breast Cancer Campaign’s, John Lehal, Insight Public Affairs, “The Next Generation: Parliamentary Candidates to Watch”.

The reason why I mention this is not only because they are a very astute bunch at Insight, and if they think that these are the people to watch then we should watch them, but also because of the dearth of scientists, doctors – anyone who has any knowledge or interest in medical research – on the list. (Just looked up dearth in my thesaurus and suggest you focus on the lack or absence part of the definition rather than the shortage or scarcity!).

Just as I don’t think you have to be a woman in order to understand issues around maternity benefits, I don’t think you need to be a scientist to value medical research. But if there are no scientists, no doctors, no researchers in Parliament – how will we ever have a balanced and informed argument. We are very fortunate to have some excellent people in the Lords who understand science and research – Lords Turnberg and Winston to name two but we could do with some in the Commons as well.

I hope that David Cameron’s ban on second jobs for the Shadow Cabinet after the end of the year will not extend to all MPs. I would like them to have second jobs – not highly paid consultancies where their political connections add value but rather as part-time GPs or, working in the voluntary sector so that they remember what it is like to have a job outside the rarefied air of Parliament and to deal with the execution of all the policies which come at the rest of us thick and fast.

Panto Horse Derby and Generations Walk

It is rare that I am able to combine family and work and this weekend was the moment it all came together. Saturday was the second Pantomime Horse Derby at Windsor Racecourse. Thanks to generous sponsorship from RSA it was a family day out with a barbeque, entertainment for the children and of course the panto horse races and dressage. We hope that we have broken the world record for the number of pantomime horses in a race – will keep quiet about the number that completed the race until we hear.

Number 1 daughter is visiting from Switzerland with children and Number 1 son and family. Even his in-laws came along, so we were at Windsor en masse and a great time was had by all. Matt Hicks showed everyone how dressage is really done on his horse, Highmark, and then the panto horses gave their all. Very proud that the Breast Cancer Campaign horse came third in the dressage – yes I know I was one of the judges but I am sure that had nothing to do with it. Very aptly the winner of the best turned out horse was “The Dishonourable Member” complete with pin-striped suit and loadsamoney pinned to it. True to form, chocolate money was thrown up to the judges as a bribe but we acted entirely within the rules and the fact that they won was down to creativity.

All four grandchildren stayed the night and by the time two six-year olds and two four-year-olds settled down the night was half gone, and they were up at about 5.30am so I was very bleary eyed when I arrived at the Generations Walk at Kenwood at 9am. This is the eleventh walk and there were a lot of familiar faces; men, women, lots of children, some walking with parents and some in push-chairs and quite a few dogs as well. Cheryl Stakol continues to do an amazing job with her walk and her family all rally round. Over the years the walk has raised around £250,000 – all down to one woman and her family and friends.

A sobering moment amongst all the pink and fluff – three women discussing the lingering side-effects of their chemotherapy – there is still a lot to do before we can say we have beaten breast cancer. The money raised this weekend will go to ensure that we do get there – for women now and in the future.

Theatre on the silver screen

I have been passionate about the theatre since childhood – many years of speech and drama classes and acting at every opportunity (so nothing’s changed then!). Knowing that my inability to sing in tune and dance at all might be a bit of a hindrance in a career in the theatre, my energies went into admiring those who could do all of those things.

I have however gone to the theatre less and less over the past few years – it has become expensive, travelling to and from the theatre seems to take longer and longer and, to be honest, I don’t hear as well as I used to and hearing aids don’t help when actors turn upstage while they are speaking. So when the opportunity came to attend my local cinema to see a live performance of Phèdre with Helen Mirren in the title role coming from the National Theatre – all for £17.50, I took it, but with a little trepidation. After all nothing can replace a live performance.

It was stunning – and what was most stunning was that you never forgot for a moment that you were watching a live theatrical performance. The cinema was packed and the audience broke into applause at the end. It was as if you were sitting in the front row of the stalls with close-ups to boot. The sound was clear and the atmosphere was gripping. Well done National Theatre and I will be there for the rest of the season.

I am already a convert to the broadcast performances of opera and Tuesday night was La Traviata live from the Royal Opera House, Covent Garden. It was not only broadcast to cinemas across Europe but also to a number of big screens in places like Trafalgar Square. The latter is not for me but the cinema performances are wonderful. On the rare occasion we go to the Royal Opera, sitting in the amphitheatre is the cheapest I will go and that can be anything up to £70 a ticket, with small seats and no arms so you are very up close and personal with your neighbour.

I always cry buckets – not at the final scene where Violetta, moments away from death from TB which you think would have affected her lung power, sings some glorious arias – but the second act where her lover’s father persuades her to leave him. The fact that this was sung by the divine Thomas Hampson was a bonus.

I used to laugh about the inconsistencies of opera and the unreality of the plots – but compared to some of the special effects in the cinema today, the emotions in opera are real and the artistry cannot be airbrushed or manipulated. Bravo!