Tag: cancer support

Double zero: my breast cancer legacy

What’s double-zero.org all about? Double-zero is my legacy after breast cancer rocked my world in 2017.  I had no idea what HER2+ meant, who to turn to, or where to go for advice.  So I Googled… That was a fundamental error for me.  Gripped with 

Writing through the post-treatment wasteland

By Katie Murray, Love of literacy One and a half years of breast cancer treatments have left me feeling like a broken house. Chemotherapy. Three surgeries. Radiotherapy. Hormone therapy. I am all smashed windows; a trail of litter and destruction running up to my door. 

Q&A: Leanne Pero, Black Women Rising founder

Q&A: Leanne Pero, Black Women Rising founder

This week I’m introducing you to the amazing Leanne Pero, founder of Black Women Rising. I met Leanne in 2019 and we’ve since become friends. It’s safe to say that she’s one of the nicest people you’ll come across in this community.

Leanne was diagnosed with breast cancer in 2016 and has subsequently spent a large proportion of her time involved in breast cancer awareness campaigns and helping others who are going through breast cancer. You’ll probably have come across Leanne via one of her brilliant cancer projects – whether Black Women Rising (including the brilliant magazine), the Positive Day Planner, – or one of her interviews. Leanne was deservedly nominated and subsequently in the final of the Lorraine Woman of the Year for 2019 and she has won a number of awards for both her breast cancer work and other community/dance work. I want you to get to know the person behind these accolades and understand what is was that led her to focus a lot of her time in helping others facing breast cancer…

Can you start by telling us a bit about your diagnosis?

After finding a lump in my right breast, I was diagnosed with Stage 3 Breast Cancer, aged 30 in October 2016, just 6 months after my mum was diagnosed with breast cancer for the second time. I underwent 8 gruelling rounds of chemotherapy, a bilateral mastectomy and immediate reconstructive surgery. 

You were young when you were diagnosed with breast cancer, how did the diagnosis impact your life at that young age?

I had convinced myself it was nothing so when I heard the words “I am not going to beat around the bush, we’ve found cancer” I went into a state of panic and anxiety. I couldn’t shake the sense of shame around my diagnosis so only very close family and friends knew but no matter how many wonderful people you have around you, cancer is a lonely journey.

You were running your own business when diagnosed, how did you juggle everything during your treatment? Were you able to carry on working during treatment, or did you take some time off work?

At the time of my diagnosis I was fit and healthy, I was a successful business owner and I had a dream job at the world-renowned Pineapple dance studios. I was also at university finally getting my business management degree. Due to the intense nature of my treatment and subsequent surgery I was not able to carry on working. I had a few days to hand over the business, defer uni and cancel all commitments. 

Being diagnosed with breast cancer as a young black woman had a huge impact on your life – can you tell us a bit about this.

A week after my diagnosis, during an appointment with my oncologist, I was told that many people within the BAME community refuse the drugs. She told me “I know you will beat this, and I am going to need you to go out and educate everyone that chemo is not that bad so that they stop refusing the drugs”. Whilst I appreciated her vote of confidence, at the time I forgot her plea. Little did I know that the future would see me setting up a charity to help others in the same situation as me.

Lots of people find that cancer impacts their mental health. You’ve been vocal about the impact of cancer on your mental health – can you tell us a little bit about how it affected you and what you did to deal with this?

I definitely struggled with my mental health both during treatment and after it. Everything in your life changes in an instant. Your body changes. You lose so much both physically and mentally.

I began to see a therapist which has helped me immensely. In addition to that I starting a gratitude journal. I found this incredibly useful. Even on the days I had chemo, I made sure to write down things I was grateful for. It was such an important tool for me that last year I launched a new company called The Positive Day Planner and created 21-day gratitude planners. You can see more about them here.

I’ve been following your fantastic Black Women Rising campaign since it’s launch. Can you tell us a bit about the campaign?

Black Women Rising started as monthly peer to peer support groups – these are the heart of the project. From there we ran pamper events for women of colour. The next big step was the UK first’s all-Black cancer portrait exhibition which launched at The Oxo Tower and then toured London. In 2020 we launched our weekly podcast as well as publishing our inaugural magazine.

What led you to set up Black Women Rising?

In my quest to find the right services to help me, I realised that the NHS lacked cancer support packages for Black and BAME cancer patients. From there I saw that stories from my community were being excluded from the UK’s mainstream media outlets, magazines and perhaps most importantly – from reputable annual cancer campaigns by brands and charities failing miserably at diversifying their campaigns. All this did was further fuel the false narrative that cancer is “not a black disease”.

I began meeting women and men who were either mis-diagnosed, not offered mental health support and generally left feeling excluded from communication with their consultants which echoed the man other health inequalities in the BAME community.

You’ve been very active in the cancer community raising awareness of breast cancer issues over and above your Black Women Rising campaign, what sorts of things have you been involved in?

I am always ready to get involved with other charity campaigns as well as those of major brands. Some of these include Pretty Little Thing, Stella McCartney, Estee Lauder, GHD, Zalando, Breast Cancer Now, CoppaFeel!, Future Dreams.

What would you say are the key messages that you’d like to pass onto young women (or any race, nationality, sexuality) who are diagnosed with cancer?

My biggest message is to take every day as it comes.

And the other is to seek external support. Find organisations like ours where you can meet likeminded women to help you through everything.

What’s next? What plans do you have going forward and what should we look out for?

We have big and exciting plans for 2021 – some of which we cannot share with you quite yet (sorry!) and some of these are going to have to be adapted to make them Covid friendly. We have plans to increase our support groups, launch series 2 of our podcasts and work has already begun on our 2021/2022 magazine.

To find out more about Leanne and Black Women Rising, you can follow them on:

Instagram: Leanne Pero and Black Women Rising

Twitter: Leanne Pero

Facebook: Leanne Pero

Black Women Rising website

And you can order a free copy of the magazine here.

February 2021

Secondary breast cancer: A slow train to nowhere

Secondary breast cancer: A slow train to nowhere

In this guest blog, Miranda talks about her secondary breast cancer diagnosis and the impact upon it has had upon her… In March 2019, I celebrated with a glass of fizz, the news from my breast surgeon that all was well and he didn’t need 

Q&A with Helen Addis aka The Titty Gritty

Q&A with Helen Addis aka The Titty Gritty

Let me introduce the fantastic Helen Addis who has participated in this week’s Q&A. Helen (aka @thetittygritty) was diagnosed with breast cancer in 2018 and has subsequently spent a large proportion of her time involved in breast cancer awareness campaigns and helping others who are 

Research into anxiety and resilience after breast cancer

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 . 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.   

September 2020

The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.

Q&A on clinical trials with Ancora.ai

On August 6, 2020 Ticking Off Breast Cancer and Ancora.ai went LIVE together on Instagram to discuss all things clinical trials and answer questions from the audience. You can watch the replay here, and check out the recap of the Q&A below. Ancora.ai is a 

Support through cancer – near, far and virtual

Support through cancer – near, far and virtual

I’m Harriet, aged 48, married to Andy with three children aged 17, 15 and 11. In April 2018 I was diagnosed with ductal invasive oestrogen positive breast cancer. It’s about six months since I wrote this mammoth blog in a world before lockdown and Covid 

Anxiety, anger, grief and… cancer

Anxiety, anger, grief and… cancer

My breast cancer diagnosis came in January 2016 when I was 54. A tumour was detected in my left breast by my second routine mammogram. I hadn’t felt a lump or seen any changes in my breast. It came out of the blue and was a huge shock.

I now live flat, without breasts and have accepted my new body shape. Indeed, I campaign and advocate for patients to be given all the treatment options after mastectomy so that they can make an informed choice about what happens next to their body. Since my cancer diagnosis my mental health has fluctuated. Some days I’ve felt happy, but on many others, I’ve felt as low and despairing as I think I have ever felt before. I’ve found that every day is different and in the early days I felt lonely, confused, angry, isolated, and scared.

Anxiety, anger and grief are the three emotions that I felt and still feel most often.

Anxiety

I’ve always thought of myself as a glass half empty person and I’ve experienced anxiety and depression over many years. I’ve also been very good at catastrophic thinking. I mean, why wouldn’t I have got cancer? I always thought that it would be bowel cancer, so it was the type of cancer that I got, not that I got cancer, which was the surprise. I’d had a run of bad luck with my physical well-being for a couple of years before the really big stroke of bad luck that was cancer. If my mental well-being was a weather forecast it would be sunshine and showers – some days (more and more recently) are bright and light and happy, whilst others are dark and stormy.

I think it’s safe to say that cancer is a head fuck. Especially if, like me, depression and anxiety were companions before the arrival of cancer. And I’m lucky. My oncologist told me that he was pretty sure that he wouldn’t see me again after the five years were up. Do I believe him? Can I believe him? What’s that ache in my chest? Pain in my groin…definitely secondary bone cancer. Can I get an appointment to see him?

I saw my breast surgeon earlier this year and reported a strange sensation where my left breast used to be…that was the cancerous breast. It was a feeling of fullness, and I’m aware of it as I sit here writing. Turns out that it’s phantom body part sensation. Which makes sense since I don’t have breasts anymore. My anxiety must have been apparent, and I was sent for an ultrasound to check that there was nothing sinister going on. Of course, there wasn’t but it just shows that fear and worry bubble away in the back of my mind… although it is getting better the further away from diagnosis I get.

Anxiety is often around for me and has been for many, many years. I’ve accepted that I’m an anxious person and I’m learning to live with the emotion rather than fight it. I have weekly psychotherapy sessions and am working through a Headspace meditation programme, aimed specifically at anxiety.

The most tangible manifestation of my anxiety since I’ve had cancer is my inability to go on holiday at the moment. I love planning where and when to go but I’m unable to actually click the confirm button and make a booking. And it’s not just trips to far flung places that I panic about. This time last year I had booked a short trip with some friends to stay in their flat on the Costa Brava. As the departure date loomed into view, I descended into a tailspin of anxiety, catastrophising and sheer panic; coupled with a feeling of being out of control. I ended up cancelling and losing the cost of the trip. I even pulled out of a weekend away in Yorkshire back in February. Luckily, I have a very understanding and caring husband who is supporting me though this situation.

This feeling of lack of control and anxiety reared its ugly head again a few weeks ago, just when I thought that I had locked that chimp back in its box. I’d done some work with Dove and a topless image of me was up on a billboard in Times Square New York! Clearly, I’d be able to get on a plane and go and see it – wrong! My desire to go was strong but my stormy mind was stronger and again I succumbed to that same anxiety. No New York for me.

Anger

In a counselling session, a few weeks ago I realised that I’d been angry for a lot of my life. Anger which I’d pushed down as too frightening to confront. Anger which I’d squashed because I was busy doing other things. Anger which had anaesthetised other facets of my life. Anger which had spawned anxiety, fear, the need to have control and feelings of abandonment.

Breast cancer is another personal trauma which has made me unbelievably angry… but I believe it has also been the catalyst for me to address the deep rooted emotional and psychological issues that have been festering since childhood. Anxiety, worrying, phobias and catastrophic thinking have been part of my make up for as long as I can remember. I’m frequently told that I’m a very calm person – this is definitely not how I see myself. I must be a very good actor, putting on a mask of calmness.

The counselling work that I have been doing recently has started to help me to understand the anger and why I am so angry. Other things are starting to make sense – why I am feeling these emotions and why I did some of the things that I did as a teenager.This is not the first time that I’ve been in therapy. But it is the first time that I’ve dug down so deeply into my past life and spoken out loud to someone other than my husband about certain traumatic events. I think that this has happened because I’m now fully ready to do the work – thanks cancer – and also because I’ve finally found a therapist with whom I have properly bonded, and who truly and completely listens to me.

Grief

And then there’s grief…

I experience grief as a stealthy emotion. It creeps up on you when you’re least expecting it. I experience grief differently to sadness, which can sit on my shoulder for days on end. Grief, however, punches me in the stomach, pokes me in the eye, kicks me in the shin and then runs away until the next time it feels like committing GBH on me. Grief causes me physical pain and makes me feel sick to my stomach. I always forget what grief feel like until it periodically comes back to remind me.

I clearly remember one of those grief-stricken times. It was around the second anniversary of my first mastectomy in March 2018. I’d had my second mastectomy a few months before and I was generally feeling good about my body and how I was coping with the after effects of cancer. I think that my subconscious mind had remembered before I was properly conscious of the date. As soon as I started thinking about it, all of the memories came flooding back. How scared I felt before the operation, how scared I felt after the operation. How I was sure that I’d never get used to having only one breast, how upsetting it was to look at myself in the mirror. All of these thoughts running round and round in my head and self-perpetuating the feelings of sadness and self-pity.

I think that what I was doing was grieving for my lost breast; the breast that I had no choice over losing. I don’t think there had been time for that grief in the previous two years, as they’d been taken up with all of the treatments, operations and appointments, and then concentrating on getting my energy back, and trying not to worry about the cancer coming back, and deciding to have another mastectomy, and recovering from that operation and, and, and … I’m sure you get what I’m going on about.

When I think back to these times, and also when I recognise these feelings encroaching on me now, I’m reminded that my emotions are bubbling away just below the surface in my mind. It only takes a little nudge for me to be tipped back into the maelstrom of rumination and dark thoughts. I’m reminded that self-care, compassion and kindness should always be uppermost in my mind, and that I have to keep working at being positive and moving forward with my life. And it’s OK to be not OK sometimes. It’s OK to recognise that today is a bad day. I now try to sit with that difficult feeling until it passes, because it will pass.

Juliet writes for her own breast cancer blog, Blooming Cancer, where she talk about all sorts of breast cancer topics, in particular the choice to live flat after a mastectomy.

May 2019

The information and content provided on this page is intended for information and educational purposes only and is not intended to substitute for professional medical advice.