The need for ‘knowledge’

A demand for information about breast cancer and breast cancer research was evident in talking to a number of women, who described how they consulted numerous different resources in an effort to find out more. Jackie talked about how this need to know as much as possible developed after her own experience of breast cancer. It was a desire that seemed to be partly satisfied and

perpetuated by her decision to get involved with the Charity , as she said; ‘that’s partly why I'm so interested in what they are doing’. Sometimes the need for information

specifically about the research activities of the Charity was driven by a long standing investment, as Betty’s response to my question indicated.

Sahra/ is it important for you to keep in touch with what’s going on in terms of the research work o f the Charity?

Betty/ oh definitely yes. Oh heavens yes. After being, shall I say, from when it didn’t even have a name to now, then you must understand my very strong feelings about it. I mean eight and a half years is a hell o f a long time to be on a Charity.

For most, however, it wasn’t simply that fundraisers wanted information about the research being carried out by the organisation they supported, but evidence that ‘knowledge’ was being reproduced. This was reflected in the way one woman criticised the response she had received from a member of the Charity’s staff on inquiring about how the money she and others had raised would be used.

Janet/ In the past I have phoned the Charity and they have said a computer! Quite honestly, that is not what they [the fundraisers] are looking for. If they are sitting alongside someone dying o f breast cancer they do not want to hear that you’re going to buy a computer

A desire for more than just ‘information’ was more explicitly articulated in the way fundraisers talked about the kind of research work the Charity should be supporting. This was brought sharply into focus in the context of one woman’s response to the possibility, suggested by another participant in a focus group, that the Charity should look at inequities in the provision of treatment for breast cancer.

No, the Charity’s work is to crack the disease. I wouldn't want them to do that and leave out other things that were vital. I think you can spread yourself too thinly.

Others I met concurred with this. One woman said that the Charity should be about, ‘ stopping it in the first place not messing around with treatment’, while another

added that it has got to continue to ‘make sure that it keeps ahead o f the field’ and that

they ‘find a cure and what the cause is’. One particular event brought home the strength of many fundraiser’s feelings about this; the Charity’s annual rally for fundraisers in June 2000 when about 40 key supporters from across the UK came together for a few days.

The place for this event, a country house in the Midlands, seemed a suitably auspicious setting for a yearly rally. Here, people from different regional groups came to meet other fundraisers as well as the Charity’s staff. It was also an opportunity for the organisation to thank fundraisers and give them renewed enthusiasm for future money generating ventures. Talking to several fundraisers informally in the evening before the day’s main events highlighted the extent to which the research activities of Charity H were at the heart of their own

identification and investment as fundraisers. As one woman said ‘The research, well that’s what w e’re all here for isn’t it, and why we are doing what we are doing’.

The following morning events, began well enough. The head of the fundraising section in the Charity started the meeting by first recalling what had been achieved in the last year, namely the much awaited opening of the dedicated research centre. He nevertheless reminded participants that the next stage of the work of the Charity, maintaining the research at the centre, was likely to be

‘hard work’. The rest of the day’s activities focused first on the use of publicity to raise awareness which was followed by a somewhat less inspiring session concerning health and safety issues during fundraising events. After this

particularly downbeat workshop, what appeared to be required, at the end of the weekend, was a rallying and resounding endorsement about how the work they did to fundraise had and would continue to contribute to the research work of the centre.

The closing speech of the day, billed as the ‘Past and Future of Breast Cancer Research’, at the very least held out this promise. I recall in my fieldnotes the content of this talk from a member of the research services department in the Charity:

The talk starts with an explanation about how the Charity’s research strategy is focusing on the ‘causes’ of breast cancer. The speaker (a member of the research services team) initially points out that historically what has been thought to cause breast cancer has changed dramatically. For the next 20 - 30 minutes he examines the different ways that this has been understood and the way that treatments have been linked to these changing beliefs and knowledge. He plots what seems like a linear historical trajectory. This includes earlier notions that breast cancer is caused by ‘black bile in the body’ which has to be ‘purged’, to the idea that breast cancer is a ‘local disease’ that has to be ‘cut out’. At this point, he intersperses his talk with fairly graphic black and white drawings of 18* century practitioners undertaking mastectomies. He then moves onto more recent notions of breast cancer as a disease of cells that can be treated with chemicals or radiation, but is careful to point out the ‘timelag’ between knowing that radiotherapy could be an affective agent to developing a suitable means of administering this as treatment. Reaching the 1970’s and the period of rapid generation of molecular knowledge, he explains how the focus is now towards the ‘mechanism of the cells and genes’. But on reaching the end and apex of his presentation instead of expanding on the kind of results that such research will generate, he poses a more cautionary rhetorical question; ‘does more research mean less breast cancer? Well not necessarily’. He adds that current knowledge about genes and breast cancer is ‘not likely to impact on patients very much as yet.’ It is only in the closing moments of his presentation that the work at the research centre is mentioned.

In the weeks and months following this event many of the fundraisers, who had been at this rally, felt the need to comment on this talk in my meetings with them where we discussed their hopes and expectations for the Charity’s research. One woman who lived in Lancashire described how she and her friend had felt short­ changed by this event.

Pat/ W e would have liked a lot more about the research and what was going, not just say the health and safety aspects which we were all fully aware of! Yes we will raise your funds, yes I will go out to Lancaster every night o f the week, yes have your 'jollies’, yes I'll be part o f that but if you want me to be

committed to doing that, then educate me so that when I go out there I'm spreading the right message and the kind o f message that then does you some good and that would give me the incentive to continue to fundraise

Another fundraiser was also led to reflect on the way the talk had been unsatisfactory for her and others who had attended the event;

Mildred/ The groups meeting..that was a little disappointing really, a bit breast cancer as it used to be. I wanted to know what was happening. One o f my other ladies was disappointed as well. That was one o f the main reasons why she went. She kept saying she must go and find out what’s going on. But she came back a bit unhappy.

There was also another different dimension of the talk which some fundraisers had found more than just disappointing, as one person in a focus group in the midlands pointed out.

I didn’t necessarily want to hear about history o f surgery and left feeling a bit flat because we didn't hear what was going on now and the year before it had all been so enthusiastic. I thought it was a bit insensitive as well, all those mastectomies for any ladies that had had surgery recently

Although the intentions behind this speech might have been to draw a dramatic contrast between medical practices in the past and the precision of current research on genetics, for at least one fundraiser this imagery brought the reality of the disease flooding back. When part of the attraction of the Charity for many was precisely its forward positive looking ethos, which often provides a way out of the experience of breast cancer, the somewhat brutal images and descriptions of how mastectomies had been carried out in the past did little to facilitate this process. If the use of these images was difficult for some fundraisers it was in general the lack of upbeat information or discussion of the research work of the Charity that most found disappointing.

The fundraisers’ responses to the rally illustrated not only a collective desire for ‘knowledge’ but the need for the research that they helped fund to be somewhat promissory. There was little talk of a ‘cure’ during this presentation of the work of the Charity; something that was clearly a central feature of the fundraising quest and many individual’s memorialising activities . This desire for a particular kind of science intersected in diverse ways with the genetic research the Charity pursued.