I feel privileged to have been invited to the "I am not the Cancer" Art installation in Central London part of the Metastatic Breast Cancer Awareness Campaign commissioned by Novartis.
I used to go to scientific conferences all over, sporting a badge with my name and my research lab on it. But this time, I was invited as a Science Writer! How exciting to be recognized for your work!
I was contacted through LinkedIn by a member of the Breast Cancer Care. This charity raises awareness and funds for the care of women affected by Breast Cancer whose disease has become metastatic.
Before being taken through to the art installation, we were welcomed in a reception area where we were presented with the results of the Here and Now campaign.
The Here and Now campaigns are surveys commissioned by Novartis Oncology. In the UK, with 60 respondents living with advanced breast cancer and distributed in April and May 2014, the objectives are to understand the challenges experienced by the patients at each stage of their journey and understand the barriers to improved patient outcomes.
Breast Cancer is the most common cancer in women worldwide, and accounts for a third of all new cancers diagnosed in women in UK!
A third of women with early breast cancer (EBC) go on to develop Advanced Breast Cancer (ABC).
ABC is uncurable and affects an estimated 30,000 women in the UK each year.
Average life expectancy after ABC diagnosis remains at 2 to 4 yeasr, compared to 10 years for early breast cancer.
Here and Now Survey Results
The results of the HERE and Now UK survey were presented to us by Honey Langcaster-James, a lecturer in Psychology from the university of Hull. They show that women with ABC often feel like many areas of their lives are negatively affected, such as their emotional health, the relationships with friends, family and partner. Up to one in 3 women with ABC feel they do not receive enough support from their friends or parents.
Patients with ABC require a high degree of social and psychological support. 2 out of 3 women feel like no one understands what they are going through and that it's hard to find support groups for ABC. They feel isolated from other support groups that focus on Early Breast Cancer (EBC). With time, the support they received from friends and family when first diagnosed has faded.
Regarding treatments, more work is needed to ensure greater access to new treatments for ABC patients. Almost half of the patients surveyed would like to know more about new treatments but are unsure of who to talk to, some of them don't even feel empowered to make their own decisions.
"These results call for Action... Health Care professionals (HCP) need to understand they can do more... Payers, regulators, commissioners need to work to improve the landscape... We need patient support groups... The Public needs to be aware." said Honey Langcaster-JamesLeading UK experts
Gill Donovan, Breast Oncology Nurse specialist and Research Fellow at Cardiff University, also shared her experience with us. She explained that treatment options are not the same depending on your geographical location, the access to new treatments is limited because of costs. Although, she explained, nurses need to balance optimism and realities, one important role to play is the need to give hope, to concentrate on the living and not on the dying.
" We need a service to be redesigned on how to deal with the variety of tasks such as explain treatments, refer to appropriate services, talk to patients, manage their anxiety, manage emotional and physical effects" she says.Diana Jupp, Director of Services at Breast Cancer Care, says the charity continues to campaign to improve the standards of care for people living with this complex disease. In the UK, we had 5 specialist nurses; this number increased to 32 recently. But it's 32 in the whole of UK! There's a lot of work to be done, collecting data in England, network with Wales and Scotland, sharing good practice, installing policies. A sentiment shared by Baroness Morgan of Drefelin who also came to talk to us about her continuous work to influence politics into opening up to ABC awareness.
The art installation
Then, we were led to the art installation itself: It consisted of 6 TV screens showing face and back of the head of 3 silent patients suffering from advanced breast cancer. Opposite each TV screen was a comfortable armchair; and above each armchair was a speaker from which you could hear their devastating story. So to hear their story, you had no choice but to sit in this armchair and look in the eyes of this silent patient on the TV screen (not a comfortable thing to do). The point of this art installation was to make you realise that, however uncomfortable it is, that’s how we should support friends and family as opposed to using escapism as a coping method. This art installation was created to make you feel differently, to question yourself in order to make you behave differently.
Are you affected by advanced breast cancer? Through a friend, family member, yourself? Were you aware of the lack of support for these patients? As usual, let me know in the comments box,
See you Soon for more Sexy Science,