This week we have a guest blog from Laura who is doing a clinical psychology doctorate at Kings College London. She talks about the things she has learnt from working with women who have had breast cancer and are now moving on with life post-treatment. Before going into her blog post, I’d like to tell you a little bit about the research project that she is working on, and ask you to consider signing up as a volunteer (UK only).
- Laura’s team are creating an online platform to help women who have had primary breast cancer treatment and are suffering from anxiety and/or depression.
- The project is at the point where it now needs volunteers to sign up to take part in the research.
- Your role as a volunteer would be to complete 10 online sessions discussing your anxiety/depression over the course of three weeks. These would be facilitated by phone calls.
- For more information on the project, to see the recruitment criteria and to sign up, please take a look at www.frameproject.co.uk
Now onto Laura’s blog post about things she has learnt about resilience from women who have had breast cancer…
Working on a research project to develop an intervention for female breast cancer survivors* to foster resilience has been an eye-opening and humbling experience. By far the most valuable part of this project, in my opinion, is speaking to people who have had breast cancer and hearing their stories. I feel honoured that I’m trusted with raw and honest accounts of cancer and it’s heart-warming to know that women want to give back and help other people. I’ve learnt so much about what it means to be resilient in the context of surviving breast cancer and I wanted to share what I’ve learnt with you.
1) Breast cancer has a profound and far reaching impact… but keep the bigger picture in mind.
- This is perhaps a no-brainer, but it still needs to be said: cancer can come out of nowhere, often at the most inconvenient time, and cause havoc in a person’s life. Women have told me about how cancer impacts their physical and mental health, their body, their career, their relationships… the list goes on. Breast cancer inevitably becomes part of a person’s story…But it’s not the whole story. There’s something that feels different about the way more resilient women tell their cancer story. Women high in resilience seem to have processed and contextualised their experience of cancer within bigger stories of themselves. They say things like, “Despite having breast cancer I was still able to…”, “I’ve got through lots of difficult things, breast cancer was just another hurdle to overcome” or “Life after breast cancer was difficult for a while, but now I’m looking forward to…”. It seems that it can be helpful to put breast cancer into context, see the bigger picture of who you are and your achievements and remember plans for the future.
2) Breast cancer doesn’t affect people equally… we’re trying to do better.
- As a white woman, hearing the stories of women from Black and Minority Ethnic (BAME) women were particularly powerful. Something new to me were the feelings of shame and taboo surrounding cancer that are more common in BAME communities. One woman told me that her family feared that her cancer was a punishment, and that they believed she must have done something wrong. Her family advised her to keep her cancer a secret and not talk about it, which compounded feelings of loneliness, isolation and guilt.
- From a very practical perspective the choice and availability of wigs and breast prosthetics for BAME people is inadequate. I have heard some horror stories from BAME people talking about their experiences of planning for breast reconstruction who experienced judgements about the size, shape or colour of nipples that they chose as right for their body.
- Furthermore, given the unique aspects of BAME people’s experiences of cancer some women described finding it hard to find people to relate to their experiences and finding it harder to access formal and informal support networks, which seem more accessible to white people.
- But there are people working on this who are building communities and networks and are campaigning for improvements within health services, for example, Leanne Pero who founded Black Women Rising, produced the UK’s first Black female cancer exhibition to raise awareness about cancer in Black women.
3) It can feel like no one understands…turning to people who “get it” helps.
- Time and time again women told me that it was talking to others who had experienced breast cancer that got them through difficult times. It was so important to be understood, to be heard and to feel that you wouldn’t be judged. Women described all sorts of wonderful, creative ways of connecting with others. Including joining social media support groups, following the journeys of people they could relate to on Instagram and even starting their own blogs or vlogs. Not to mention meeting others at support groups or cancer centres, reaching out to family or friends who’ve had similar experiences or even staying in touch with those who they met through treatment.
4) Cancer can disrupt normal life…. sometimes this disruption helps us rethink what’s most important to us.
- Something I remember reading about in preparation for this project is “post traumatic growth”. It’s the idea that a traumatic experience can make us stop and re-evaluate our lives and perhaps rethink what’s important to us. Whilst this isn’t something that everyone I’ve spoken to has experienced, it’s something that has come up. For example, I remember one woman talking about her highly stressful job and since experiencing breast cancer she’s chosen to reduce her working hours. Now for her, life and time feels precious and she wants to spend more time with her children as well as try and reduce stress and prioritise health and well-being, and is in a position where she can do this. In acceptance and commitment therapy (ACT) psychologists talk about identifying your values (working out what’s important to you) and being committed to live in line with your values (even when it’s difficult) as this promotes well-being.
5) Worry and low mood following treatment for breast cancer is common… help is available.
- Several women spoke about how re-adjusting to life after cancer was difficult. When they were having treatment life revolved around their cancer, from daily visits to hospitals, to dealing with aggressive side effects and the sense that all conversations with friends and family seemed to revert back to cancer. Not to mention that “normal” life was on pause. Women told me that they would find themselves thinking “once I’ve got through surgery/ chemo/radiotherapy everything will go back to normal.” However, when they completed treatment and the hospital appointments dramatically reduced, and family and friends gradually stopped talking about cancer, they were left with the emotional impact of what they had been through, and life still didn’t feel “normal”. Many women talked about feeling anxious that maybe the cancer wasn’t really gone or having spiralling worries about what would happen if it came back. They found themselves hypersensitive to any sensation or change in their body and repeatedly turned to doctor Google. Other women talked about feeling guilty for surviving when others didn’t or experiencing a huge sense of loss and sadness about how cancer had changed them. For some this resolved quickly, but for others this became full blown anxiety and/ or depression that seeped into other aspects of life. Given the traumatic experience of having cancer and its treatment, it’s no wonder that some people can experience anxiety and depression. It is important to note that there are different things that can help if you do feel worried, anxious or low including medication or talking therapies. Your GP or cancer service can make recommendations.
6) Sometimes people are left feeling weak… but you might discover how strong your body is.
- I was surprised by just how long the side-effects of curative treatment and the side effects of maintenance treatments can last. Many women talked about feeling weak and experiencing fatigue and some felt they needed to learn to trust their body again. Whilst breaks and rests are important, I found it interesting that, when the time was right, lots of women were inspired to take on physical challenges. It felt almost as though they needed to test out and discover how strong and resilient they really are. For some women this was a planned challenge, perhaps with sponsorship for a charity, and for others it was more spontaneous. One woman told me about just deciding one day on holiday to climb a particular mountain, something she had always wanted to do, and how she kept saying to herself “just one step at a time” to push herself to the top and the immense feeling of satisfaction and pride at having achieved her goal.
7) It might feel there’s not enough support specifically for cancer survivors…. getting involved in research can help you and it can help others in the future.
- Hearing the stories of women who’ve had an emotionally difficult time after cancer has been moving. Sadly, some women said that they found it hard to find the right sort of help for them at the time that they really needed it. This seemed to be one of the main reasons why people wanted to take part in our research and tell us about their experiences of cancer. Most women said they found it rewarding to know that they were contributing to research that could develop new treatments and help others.
We have now developed, with the invaluable help of the women we spoke to, the first version of our intervention to build resilience in women who have been treated for breast cancer. This year we will be recruiting women who are experiencing low mood or worry following treatment for breast cancer in the last two years to help us find out if our intervention works. If you, or someone you know would like to know more or are interested in taking part have a look at our website www.frameproject.co.uk or email us at firstname.lastname@example.org. If you’re reading this at a later point in time charities such as breast cancer now often post research adverts on their forum and in their newsletter.
*Just a note to say. Breast cancer affects men too. There are some similarities in the way breast cancer affects men and women, but there are also differences. Our research, at this time, is focusing specifically on the experience of women who have been treated for breast cancer, but we hope to expand in the future to develop interventions for men and for other cancers too.