Sarah's story: BRiC for Breast Cancer Awareness

 

I’ve cried tonight after work - I’m a primary school teacher and I don’t feel safe at all I’m exhausted

thankfully I’m off now for the rest of the week so having an orange twirl and a cuppa to celebrate.

- Sarah

22/10/2020

Sarah's story: BRiC for Breast Cancer Awareness

 BRiC for Breast Cancer Awareness

Finished 9 months of treatment (chemo, surgery,rads) in April. Inability to take part in face to face moving forward groups or celebrate with friends has made me feel so down. Stupid thing I didn't even get to ring the bell.

- Sarah

21/10/2020

Not just one day; BRiC for Breast Cancer Awareness

 

Secondary breast cancer is not just one day, it is every day.

Secondary breast cancer is the focus for awareness-raising for only one day (13th) out of the thirty-one days of October. (Breast Cancer Awareness Month). Yet most people do not know what secondary breast cancer is.

Most people do not know that:

- secondary breast cancer doesn't mean getting breast cancer twice.

- secondary breast cancer is not a less serious breast cancer.

- secondary breast cancer is incurable.

Treatment aims to slow down the spread of disease, relieve symptoms and give the best quality of life, for as long as possible. Some people live years, but only if they can access the best treatment possible, as early as possible. Delays due to Covid, or for any other reason, are unacceptable.

We sometimes read that it is not primary breast cancer that kills, but secondary breast cancer. The problem is, this way of thinking makes it appear that secondary breast cancer is a completely separate disease. It is not.

Women with secondary breast cancer were once women with primary breast cancer (unless they were diagnosed with secondary breast cancer at the same time as their diagnosis with primary breast cancer). Secondary breast cancer is breast cancer which has spread to other parts of the body. It is sometimes described as 'stage 4 breast cancer', 'advanced breast cancer' or 'metastatic breast cancer'.

It is thought that around 30% of women diagnosed with primary breast cancer go on to develop secondary breast cancer. Sometimes their disease cruelly returns years after the initial diagnosis. This is a very frightening possibility for those of us diagnosed with primary breast cancer, so frightening that a lot of us try to avoid facing our fear that our cancer might come back.

But sweeping secondary breast cancer under the pink carpet does a disservice to us all. Especially to women living with secondary breast cancer.

As secondary breast cancer receives even less attention for funding, it is imperative that our psychological needs are met and our voices are heard. Women with secondary breast cancer need women with primary breast cancer to support and advocate for them; women with primary breast cancer can be supported by, and can learn from other women with secondary breast cancer. Here at BRiC, we do not see primary and secondary breast cancer as separate entities, but instead, as being on a continuum, where a better understanding of both our common and specialised needs can foster greater mutual support and learning as well as advocacy for improved treatments.

Here at BRiC women with primary and secondary breast cancer have come together in unity. Together we are stronger.

#BreastCancerAwareness

#octoberbreastcancer

#breastcancer

#BRiC

#secondarybreastcancer

#pinkoctober

#breastcancersurvivor

#covidandbreastcancer

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.

Laura: BRiC for Breast Cancer Awareness

 

Good morning Today is Secondary Breast Cancer Awareness Day and I can assure you, I’m very aware.

My first surgery to remove a primary breast cancer tumour was September 2001, my second surgery to remove a primary breast cancer tumour was September 2004 and the third time I was told, “I’m sorry, it’s not good news” was December 2007, aged 40 when I was given the devastating news that I had secondary breast cancer, also described as advanced, incurable, metastatic and Stage 4 where the cancer has spread to other organs and/or the bones and is no longer curable.

In the whole of October, there’s only one day dedicated to secondary breast cancer - October 13th; one day to acknowledge the only form of the disease that will kill you.

There’s a coloured version of this photograph but I’ve chosen to use the black and white version to emphasise the fact that not everything about October is pink.

In amongst all of the awareness raising during Pinktober, which is how many of us in the breast cancer community refer to it, take a moment to remember the 11,500 women and 85 men who die every year from secondary breast cancer. I’m smiling because I’m still here but I cry inside for the many, many friends I’ve lost to this disease; the people who didn’t get to see their children grow into adults as I’ve done, the people who were somebody’s daughter or son, the people whose cancer drugs stopped working.

31 people in the UK die every day from secondary breast cancer. It’s the biggest killer in the UK of women aged between 35 and 50. (Based on figures from 2017).

If you’ve read this far, thank you so much. I’ve got so many people to thank and so many things that I’m grateful for. Thank you to everybody in the breast cancer community space who campaigns for change whilst living with this disease daily. You are not forgotten. You are all amazing. You are unsung heroes. What you do now, others will benefit from in the future. This post today was inspired by

13/10/2020

Caroline: BRiC for Breast Cancer Awareness

 

The last few months have been challenging to say the least. I have secondary breast cancer so have been shielding. In one sense, I have been fortunate that my chemotherapy treatment and scans have continued as normal but our support group is suspended and I feel total adrift. I feel guilty that my illness has meant the children weren’t able to see their friends to keep me safe. Now we can go out, I find I don’t want to. I feel angry when I see people flouting rules. And utterly sad that this might be as good as it gets for me with my diagnosis. All those plans to go away, visit new places while I am well enough - probably have all gone.

- Caroline

12/10/2020

Pauline's story: BRiC for Breast Cancer Awareness

 On World Mental Health Day

I have felt very irritable and teary for the last few days. The whole world seems to have gone to hell on a handcart. My depression and anxiety have gone through the roof at the latest covid news and I am actually feeling totally exasperated and physically sick to be totally honest! Sorry, but that's the truth.

- Pauline

10/10/2020