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Battles have been won but cancer charity still has a job to do, director Audrey Birt tells Helen Puttick
Probably more than we would ever imagine, but mostly in snatched private moments after rooms have emptied or behind lavatory doors.
Audrey Birt, who is stepping down from her post as director of Breakthrough Breast Cancer in Scotland, has cried in front of the MSPs. She was speaking after a short film in which a breast cancer survivor says she wishes all mothers could live to see their children's milestones.
Audrey had watched the footage many times in the past, but told the room of policy-makers in her presentation which followed: "That bit gets me every time ..." and as she said it her voice caught and her eyes filled. The emotion was infectious and from the front of the room she could see other people were upset too.
It was a powerful reminder that despite its high profile, breast cancer continues to claim too many young lives in Scotland – one of the reasons Ms Birt decided to take on the job of setting up Breakthrough north of the Border five years ago.
But there was more to her reaction than that. The 56-year-old first suffered breast cancer when she was 38 and her children were eight and 11. She was diagnosed with it again in 2011 when she was two-and-half years into her director's role. She is no stranger to bleak thoughts in the early hours of the morning.
She has bargained with her god: "let me see them through school" or more recently "let me see my grandchildren". She says: "The fascinating thing about that is you always want more."
She feels she has been lucky. Back in 1994 when she first felt a pain on one side of her chest, she was willing to dismiss it as paranoia because her friend was being treated for breast cancer at the time. But the discomfort persisted for more than a month so she saw her GP who found a thickened area of tissue. The cancer was caught at an early stage and as she recovered she watched her friend and then another die from the disease.
These tragedies influenced her more than a decade later when Breakthrough advertised for a director to establish the charity in Scotland.
She says: "I saw the impact of the condition on them and their families and knew that for all things were improving in breast cancer they were not fixed. We still lose 1000 people a year in Scotland to breast cancer. That is a lot of people and has a huge impact."
Her observation was that the health service became most interested in patients after they were diagnosed, even though the journey of their disease began long before.
She is pleased through Breakthrough to have been a key player in the drive to detect more cancers early in Scotland – an initiative backed by a Scottish Government campaign and a target to increase the proportion of cancers diagnosed in the first stages by 25% by 2015.
An advert showing breasts affected by cancer and reminding women of the range of symptoms has been a groundbreaking part of this.
Her own vigilance in checking for signs of the illness meant when it recurred again in 2011 it had little chance to progress and she wants the same for everyone. A former nurse, she found a lump which was actually benign, but another area of abnormal cells was picked-up by her mammogram. The day she found this out, she was supposed to be in a meeting about preventing onset of the disease.
She says: "My hospital appointment was first thing in the morning and I thought I would be able to get to the meeting after that. As the day panned out and I was having more and more investigations done, I realised I probably was not going back to that meeting and maybe had to take on board that I had another issue to deal with."
Her surgeon was Professor Mike Dixon, clinical director of the Breakthrough Research Unit in Edinburgh. She says the NHS staff recognised her and got him involved in her care. "He's a world leader, why would you not want him," she continues. "I could park my embarrassment. He is used to seeing people he knows."
She is full of praise for the care she received at the Western General, Edinburgh, on all levels, but what was particularly important for her was being able to take decisions about her own treatment. She declined the widely used anti-oestrogen drug tamoxifen, having swallowed if for years after her first cancer operation, and called a halt on further breast reconstruction.
She says Prof Dixon supported her, saying: "Our role now is to actually give you all the information and support the decision that is right for you."
However, this "patient-centred" approach is an area where she feels parts of the NHS still has work to do.
She knows some hospitals are very good at making patients feel like individuals, where people are given treatment options instead of being told "this is what is happening to you". She believes this is not consistent across the country and in the worst-case scenarios women are "treated as an age and not as a person".
She wants high standards of care to continue after patients finish intensive treatment too, with rehabilitation to help sufferers regain confidence and avoid depression. As yet opportunities for this are patchy.
Arguably leaving Breakthrough to set up her own consultancy and leadership coaching business is part of her rehabilitation process.
She says: "This move is about saying I do not want it to completely define me."
Her blog tells readers there will be tears as she says her goodbyes, but that's because she cares and caring made her all the more effective at Breakthrough.
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