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How to cope with metastatic breast cancer
As part of Breast Cancer Awareness Month, 13 October is Secondary Breast Cancer Awareness Day - which this year is all the more poignant as it falls just six weeks after 40-year-old You, Me and The Big C podcaster Rachael Bland died from the condition.
Metastatic, or secondary, breast cancer is a devastating diagnosis that can turn women's lives upside down and leave them and their families facing an uncertain future. We spoke to blogger Emma and charity Breast Cancer Care about how to cope when you find out your breast cancer has spread.
"I was absolutely terrified when I was told my breast cancer had spread to my sternum. Metastatic breast cancer is such an unknown thing, and at first I went into denial, thinking maybe it was just another primary cancer," says 37-year-old Emma from Sheffield.
"When they did biopsies that confirmed it was the same cancer, that's when it really hit me that no, this is serious, and this is for the rest of my life," she adds. "This isn't going away, the treatment isn't going to stop, and this is probably what's going to kill me. That knowledge is really, really scary."
Sadly there is no getting away from that fact. But, as Emma's discovered, "there are so many places to turn for support, and an absolutely amazing community of women in the same situation who are all doing really well."
Indeed, while secondary breast cancer may feel like a life sentence, it doesn't mean your life is over, and there are plenty of ways to live well with the disease.
Plan for the future
"Even though it may be hard, try to think about the future," says Jane Murphy, a clinical nurse specialist from Breast Cancer Care. "It may not be the future you would have wished for, but you can still think about goals and how you'd like to plan the coming months or years. This may bring back a sense of control," she explains.
In Emma's case, she's determined not to let the diagnosis prevent her from carrying on with life, and she's cramming in as much travelling as she can fit around her regular treatments.
"Yes, I now have cancer that will be with me for the rest of my life, but I'm not just going to stop living it. I recently got back from visiting friends in Amsterdam, and we're planning a trip to go to see friends in Canada next March. I'm trying to do as much as I possibly can to have a normal life," she says.
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Find a support network
For her, one of the best ways to cope has been through peer support groups, both online and offline.
"There's an amazing Facebook group called the Young Breast Cancer Network, which I was directed to when I got my primary cancer diagnosis - and they also have a subgroup for people who have secondary cancer," Emma says.
"It's a really sad group to be part of sometimes - quite a number of ladies from the group have died recently - but it's also a really, really supportive group," she adds. "Sometimes it's easier to talk to people who are in exactly the same boat, who you can voice your fears to without upsetting anyone around you. As much as the people around you love and support you, there are so many little things that they don't quite understand because they're not right where you are."
Emma also attends a local Breast Cancer Care support group for people living with secondary breast cancer, and says it's fantastic to meet up in 3D.
"Some months we have information sessions - most recently on haircare during chemo - and other months we just get together to chat about what's gone on," she explains.
Learn to manage stress, pain and fatigue
Stress and anxiety are totally normal and understandable responses to living with secondary breast cancer. As well as talking through your feelings and sharing coping strategies with a support group, Murphy recommends: "techniques like mindfulness and meditation, or therapies like counselling or cognitive behavioural therapy to help manage these feelings."
While physical side-effects can vary depending on your treatment, Murphy explains that: "pain, fatigue and breathlessness are common issues, and your specialist or palliative care team can offer expert advice and help on how to control them."
Dr Sarah Jarvis, clinical director of Patient.info, agrees. "Many of my patients have benefited hugely from the services provided by the cancer charity Maggie's Centres. Along with practical support such as advice on benefits or coping with hair loss, they also offer courses teaching relaxation techniques and have on-site psychologists. In addition, they offer support groups which extend to friends and families."
Keep communicating, and accept practical help from those around you
For Emma, the hardest part of her diagnosis was telling those closest to her.
"My boyfriend was sat in the room with me when he found out, so he heard it first hand, but watching him realise the implications was absolutely horrific," she recalls. "Then telling my parents was just awful. I don't think there's any way to describe how horrible it is to tell your parents not once but twice that you've got cancer, and that this time it is really serious."
Many people with secondary breast cancer naturally worry about how their loved ones will cope, and the impact their diagnosis will have on their relationship. Communication is key to managing this.
"Make sure you're being clear about your needs so loved ones can support you with more confidence," Murphy says. "You might also find you need practical support with things like shopping, cleaning the house, and transport to hospital appointments. Though it might be hard to ask for help, people are often keen to pitch in however they can in times of need," she adds.
Local voluntary services like the British Red Cross and the Carers Trust can also provide practical support, while peer support groups and forums can be a valuable source of advice on approaching difficult conversations with your loved ones.
Visit Breast Cancer Care's website for more information and support on living with secondary breast cancer, or to join their campaign for improved secondary breast cancer support.