Wednesday, 14 October 2020

Resilience in Secondary Breast Cancer: BRiC's Collective Voice


Why is resilience important in secondary breast cancer;and why BRiC as a group has not separated primary and secondary women with breast cancer.

“Secondary Breast cancer is not about dying, it is about living life to the full while you can”

The importance of resilience and how to become resilient is a constant theme in our group. Many of our members talked about how their resilience carries them through whether they have primary breast cancer or secondary breast cancer. Resilience helps us to “live with what we have and choose life”. For everybody, whether they are primary or secondary sisters, resilience is about not pretending things are ok, whilst getting on with life. We felt it was about acknowledging that we may feel overwhelmed, and giving space to those feelings, and that we can be angry and sad whilst also living life and taking joy. This theme of our resilience pulls us together. Resilience is “experiencing the emotion, living with it and going forwards”.

Several members noted that they felt abandoned by their BCN, that the BCN’s only supported primary breast cancer sisters : “ I got dropped by my primary nurse like I was toxic” “I never see a BCN now, when I had my primary they were at every consultation” One member looked for a SBC support group, but her nearest were 20-30 miles away. These members were tenacious and determined in seeking help for their feelings once the SBC had been diagnosed, and found help in local hospices and counsellors. Our BRiC group has the emphasis on resilience and these members sought support here, and found it.

Many primary breast cancer sisters discussed feeling scared by the idea of recurrence or secondaries but felt the inclusive group here has educated them about how secondaries may present, something that seemed sorely lacking when we are discharged from our oncologist and not given the warning signs to look out for, or even told about the possibility of secondaries. “Education about mets can be scary, but the mix of primary and secondary sisters gives us a chance to keep informed” and that it is “possible to live with a diagnosis of secondaries”. One member said “it can be scary to read secondary stories, but it has encouraged respect and admiration for those living with mets”. Some members said they have become better at tuning into their bodies” and have “less fear” because of our secondary sisters. There is a saying “knowledge is power” and our knowledge means we are less fearful.

Our diagnosis may differ from primary to secondary but we have a lot in common. We may feel overwhelmed, by our disease, by the treatment, by the impact on our lives. We all need a place to talk about our emotions and fears, be it about our disease, our treatment, our families, our work, or living our new normal.Worries and frustrations about body confidence, side effects and relationship concerns link us all, primary or secondary. We can all be ok one day and then find our resilience lacking the next. We are all scared about disease progression. Our diagnosis of breast cancer is always life changing, whatever the stage, or the treatment.

So, what do we all gain from our group, a group that does not separate between primary and secondary breast cancer - that sees both as on a continuum? Over half of our members are secondary breast cancer sisters, and when recurrence happens in 30% of cases, that high proportion demonstrates how much the secondary sisters get from the group. We have a space to be together, for our secondary sisters to not be “boxed into a corner” and made to feel they are contagious. The emphasis on resilience of this group has helped members find a safe place, a resilient place where we aren’t terrified any more. We are stronger together, like the spokes of an umbrella. We can raise a hand and say “I need a hug, I am struggling today” and there is one there. We don’t have to put our “I’m coping fine” masks on here, wobbles can be honest and heartfelt. We have new hope, of living longer than stats may tell us we will, of living better and with a new peace of mind. We have learnt that “here and now is the best time, as no one is guaranteed a future”. If we wish to face the truth about an uncertain future, the support and help is here. More people talk about secondary breast cancer now, which empowers us to speak out about our own fears and experiences. We have learnt tools from the group to support ourselves, to practice self care and living in the moment.

Breast cancer can put us on a lonely path, but together we can “inform, change perceptions and build resilience”. We are stronger together.

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