BRiC's Collective Voice: Lack of Psychological Care, Oct. 10; 2019

“Living with #secondarybreastcancer as a “chronic illness” which brings even more stress and emotional trauma, makes it difficult to move on and “get over it”. We are left in a constant state of anxiety and stress.”

Thank you to Susan Quirke, One of our new admins, who summarised our Sunday discussion this week.

For our discussion we focussed on (the lack of) psychological care after diagnosis. Naz told us that psychological well-being and physical well-being go hand in hand, they promote each other. 

Unfortunately for us women with breast cancer, there was a big consensus that psychological care when we most needed it was not available.

Our members mentioned the benefit of online support groups. Many members mentioned that groups like BRiC are their lifeline. They can feel like they aren’t alone and members support each other. No matter what part of the country we are in we feel supported. Some areas don’t have any counselling services so groups like BRiC become extremely important to help us not feel isolated.

Lack of support after treatment meant that many members felt that once treatment for primary breast cancer had ended, everyone expected them to be happy, move on and forget about cancer. And once treatment ended there was no follow up or support from medical staff. Our members with secondary breast cancer, where treatment and monitoring continues for as long as it remains effective, felt the lack of ongoing support particularly keenly.

Another source of depression and anxiety came from "scanxiety" (scan anxiety) - the terror of the cancer coming back, or for those with secondary breast cancer the fear of progression, and people around us not understanding how every scan sets us off in blind panic and fear. There is a feeling of loneliness and isolation as we feel we can’t express our fears to others outside these groups.

People we love are important to us. We feel guilt at not being able to just move on and “get over cancer”, if we have been through treatment for primaries, and those of us with secondaries feel guilty about the worry we are causing our loved ones. We feel like we have to put on a brave face and that we can’t truly express our worries and fears in case they get upset, which leads to feelings of isolation.

We actively seek out help. Many members feel like we have to seek out help, that no one offered us any counselling or asked us how we were coping.

There was a real feeling that others say, or imply, "you are cured, now move on with your life."

Moving on courses are helpful. Many members have been to a moving on course through Breast Cancer Now or other places like Maggies, Macmillan, The Haven etc. Many were referred by their breast care nurse.

However there are often long waiting times for these courses. Some members pointed out that these courses are always on in the day time and with work and family commitments they can’t make the courses.

Counselling helps. Some members have seen their local hospice psychiatrist and some have been referred by their GP for counselling and CBT which they have found helpful, but also that there aren’t enough sessions. However, we are usually offered only four to six sessions and then we are supposed to move on with our lives.

Some members said they weren’t honest about their mental health and would pretend they were fine because they felt that’s what everyone wanted to hear. Others admitted to self-medicating with alcohol to numb the trauma and fear. Others felt disappointed in themselves that they couldn’t just move on and get over it, like they had let everyone down as they weren’t behaving how others expected them to. There was a feeling of shock that as soon as treatment is finished you loose all support and the expectation is that you should be delighted to be over treatment and that wasn’t how many members felt. They felt lost after treatment and anxious and very unsupported.

Some members reported that they were offered complementary therapies such as Reiki and massage and they found this helpful in feeling calmer and more mindful. Nature and distraction techniques were also mentioned, that being in nature really helps to quieten the mind and put life’s worries in perspective. Our members have a new appreciation for immersing themselves in the outdoors. Some members use distraction techniques to avoid thinking about their cancer experiences and try to keep themselves immensely busy to avoid any deep thoughts about cancer sneaking in, though it was acknowledged that this may not be productive in the long run.

Some members found that it was too painful to relive their cancer experiences and didn’t want to talk about it or seek out counselling they didn’t want to go through what they had experienced again.

Many felt that exercise helped with their moods and had become more aware of this and made sure to make time for exercise as they could feel the difference mentally.

Financial insecurity was an issue. A number of people have commented that having less money means more stress due to not being able to work or working less hours. So as well as having to worry about the cancer coming back and feeling trauma from everything we go through they also have to worry about paying bills and trying to manage to keep everything going.

Though it is possible to get NHS support for family members in terms of counselling, the majority of us felt this seemed to be unusual as we struggle to find support.

Some members expressed the thought that Private get more support versus the NHS. That it’s easier to access a mental health professional and on the NHS the waiting lists are prohibitive.

Timescale to recovery was a controversial issue. Some members have expressed that they have more anxiety three years later then during treatment but now it’s unacceptable and they cannot express their fears. They felt like there is a timescale on recovery that we aren’t allowed to still feel worried or concerned as time moves on.

Some members have gone to their GP as they feel suicidal and have been put on antidepressants. There is a real feeling that there is pressure to put on a “happy face” around their children to not show any fear or anxiety as they don't want their negativity affect their children’s lives any further.

Doctors’ attitudes are key. There was also a mention that when doctors reel off facts and figures about survival rates and so on, it actually make us feel even more anxious and worried, that they don’t have the ability to feel empathy and speak in a more considered and thoughtful way.

If you are a woman with a breast cancer diagnosis and would like to join our private psychoeducational support group please messages us here and we will get back to you.

Girls gotta have fun: Caroline Humber at Breast Cancer Now Show!

'It was a wonderful day, full of excitement and emotion.'

Today we share these words from Caroline, a very special member of the BRiC admin team. She is living with secondary breast cancer.

Last week on 3rd October I took part as a model in the Breast Cancer Now London Fashion Show along with 31 other women, including fellow BRiC members Jasmin and Keely, and men, who have been treated or who are currently being treated for breast cancer.

It was a wonderful day full of excitement and emotion. For me, the joy came not only with having my hair and make-up done professionally together with gorgeous clothes but with the time together with the other models, including our own Jazz and Keely. We were of all shapes, sizes, ages and stages of disease from DCIS to secondary cancer. And a timely reminder that men get breast cancer too.

Spending time with this fantastic group, talking about our stories and shared experiences was amazing. We laughed, talked for hours – not just about breast cancer but about everything – from families and children, disappearing friends and new friends after diagnosis, our work and our lives. We laughed at how excited we were to meet the celebrities involved in the show, especially our male models to walk us down the catwalk. We were entertained by the brilliant ABBA tribute band Bjorn Again and by the wonderful Heather Small who had us all in tears as she brought us on stage to sing her song “Proud” with its chorus of “What have you done today to make you feel proud”. Just a wonderful day and I know we will all remain friends.

It was a reminder that sometimes there is no substitute for talking, especially face to face. There is something special about time with those who just “get it” – whether it be fits of laughter at the many examples of “chemo brain” to the hugs when the tears come. The week before the show I was told that my cancer had spread further into my brain and am facing whole brain radiotherapy with many side effects, including loosing my hair again. I nearly pulled out of the show and there were certainly many tears on the day having my hair styled, but talking to people who really understand how that feels meant I could find the strength and embrace the whole experience.

Support of others is so important in building resilience – it allows us to voice our fear in a way that maybe our families can’t and encourages us to do the same for others. For me, BRiC has been a lifeline, especially in the support of women with secondary breast cancer.

20/11/2019

BRiC's late Deputy Head, Vicky Wilkes: A message to All of Us

"So when you do go outside and look at those stars in our universe, take a deep breath, appreciate your existence and that you are able to do these things."

A special message to all of us women with breast cancer, from our amazing deputy head, Vicky Wilkes, whom we continue to miss and love dearly. Key words from a brilliant friend, nurturing mother, dedicated colleague, and loving wife.

This was Vicky's last post, and she was keen for it to be published widely. Thank you to Dave, her amazing husband for sharing with us.

"We all knew this was coming, didn't we? When I would be told that the end is nigh. But it is such a shock when it actually happens and they can't seem to keep your mojo up. I have been strong through my ? years of living with secondary breast cancer but it is the hardest thing I have ever had to deal with mentally and physically and this is not going to get better and I feel that the time I will fall off my perch is coming soon as my ? isn't coping.

I don't think any of us really accept our mortality, and I certainly wasn't expecting to in my early 30s then again on my early 40s, but it is what it is and I felt it arrogant to ever have said 'why me?'

My relationship with cancer started in 2006 at age 31, but it was when I reached 40 that it got terribly serious and I knew my time here would be shorter than expected.

I had imagined growing old surrounded by my family, seeing my children through their school years, into adulthood, getting married and having their own children. It hurts so much to know I won't get to see these milestones but more importantly that I won't be here for them when they deserve to have their mum there on the special days of their lives. How can I leave these two children without a mum?

Each day is a gift and the only moment any of us really have is now. I don't want to go, I don't want to leave my family and friends, but I have no choice, I have done my best but it's out of my hands.

The one, worst, horrible, bad thing about this dying lark is that I have hated causing sadness. I really hope my children can be resilient and bounce back to be the amazing adults I think they can be.

I look at life through different eyes. I wish people would stop sweating the small stuff and appreciate life and how truly amazing it is. It's ok to find something annoying but then you need to quickly get over it and be thankful it's a minor issue.

As the great Stephen Hawking said.. "Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up.”

So when you do go outside and look at those stars in our universe, take a deep breath, appreciate your existence and that you are able to do these things.

Think about those things that happen to you, that you put a lot of weight into, but which are insignificant....no sleep, bad hair day, don't like how you look, got nothing to wear, house is a mess...just let all that shit go! My body is wrecked, my mind is wrecked, but I see even those things as pretty insignificant because what I really cared about was how long I had left here, would I see my next birthday, my children's birthdays, Christmas.... I needed to keep going, I needed another day with my family and friends and then I needed another and then another, I needed to be here.

Appreciate your body, embrace it but don't obsess over it and look after your mind, as that will look after you. Be grateful for the days when you are not dealing with anything serious and yes it's annoying but it will go away.

Stop the stress of buying stuff you don't need, with money you don't have, to impress people you don't like!

I learned from everyone who joined me on this precious ride that is life. I have laughed and cried with you and we are all part of each others lives which has helped shape the people we are! Thank you, all of you family, friends, nurses and doctors who did their best for me.

You've given me much support and pleasure. I'm glad to have known some of you for many years and just wish I had more time with others of you I've not known for so long.

For goodness sake people, enjoy life, take risks, be kind always, love, be curious about everything, look at the diversity of the world around you...it's incredible, travel, be a badass, smile, be gentle and forgive whenever you can.

Thank you all, now go and toast life with more alcohol than is good for you on this occasion, laugh, smile and have an amazing time.

Much love and thanks!

Peace out! X"

#notjustoneday
#breastcancerawarenessmonth

BRiC's Collective Voice: Breast Cancer and Femininity, Sept. 15, 2019.

Our Sunday discussion focused on how our members manage to look and feel feminine during treatment, we shared tips on what works for us and discussed whether it is important to feel feminine during treatment.

For many of our members the first hit to their femininity is hair loss through chemotherapy. A sudden and complete hair-loss affects the way we view ourselves and how we perceive that others see us. Add to that, the probability that surgery will leave us disfigured to a greater or lesser extent, then it is not surprising that we feel less feminine, less attractive and less confident.

Many members said they feel glamorous in their wigs, wearing styles that they would not have contemplated before, others hate their wigs and prefer hats, scarves and buffs, others choose the bald-and-beautiful look, embracing the liberating feeling it brings. But for every member who finds joy and confidence in their wig or hat, there are many more who feel the loss of hair affects them deeply and their confidence has taken a huge hit.

Lots of our members shared tips around using make-up, bright colours, lovely lipsticks and jewellery to boost confidence during treatment. Those who had attended a Look Good Feel Better course, or similar events, said they enjoyed the tips, such as how to draw on eyebrows. Others suggested using positive affirmations, looking in the mirror and seeing your own beauty; remembering to smile was a popular tip. One member said her method was to simply put her head down and power through, there is time enough to worry about our femininity after treatment.

Our private group has members with both primary and secondary breast cancer and for those with a secondary diagnosis the effects of ongoing treatment can mean their sense of femininity is hit even harder. They may be facing a constant battle with side effects: hair loss or thinning, weight gain, pain and bloating, were just some of those mentioned. For all our members the general tiredness adds to the struggle. Lots of us want to feel “normal” more than to feel feminine; something made difficult by the side effects of the drugs. Weight gain, premature menopause, loss of libido and loss of confidence affect almost all of us to some degree. For those of us in a relationship, having a supportive partner can be a boost to our confidence, although some members confessed to a feeling of disbelief when their partner tells them they are beautiful. Those who are single often worry about how potential partners might see us in our new, less feminine state.

Some of us who weren’t “girly girls” before cancer found the urge to enjoy what was left of their femininity, things that weren’t important before became a high priority, our hairdresser often became our new best friend. Keeping up with our routine helped many members, having a manicure, wearing make-up, buying nice clothes and getting dressed up helped to maintain that sense of self. For others it was a relief to be able to let those things slide and enjoy just being ourselves with no concern about how we looked.

We wondered if the pressure to feel feminine could be counterproductive. Side effects can be a long-term thing, is it feasible to keep on putting that pressure on ourselves to look and feel feminine when we are exhausted from the effort? One solution might be to find a way to be kind to ourselves rather than concentrating on how feminine we feel. Others thought that focusing on our femininity helps us to tolerate the treatment and its effects.

If you are a woman in the UK with a breast cancer diagnosis and would like to join our private group, please add your name into the comments or send us a private message and we will get in touch with you.

BRiC's Collective Voice: Coping with Grief and Loss; Sept. 6, 2019

This week, our Sunday discussion focused on our personal experiences of grief and loss. Our members dug deep and gave us some heartbreaking personal stories. How resilient we all are, and how supportive we all are of each other in our sorrow.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please leave your name in the comments or send us a private message.

BRiC's Collective Voice: Complementary Therapies and Resilience; Aug. 28, 2019.

'It’s not necessarily about being pampered, although this can feel good, it’s more about the support and kindness of another human being.'

Our discussion topic focussed on complementary therapies and their effectiveness in helping us to build our resilience following a breast cancer diagnosis. Our members have tried counselling, mindfulness, CBT, acupuncture, meditation, reflexology, Reiki, tai chi, hypnotherapy and so on. A good therapist will listen to how we feel and offer appropriate therapies to suit our needs. Some therapies offer a quick fix, perhaps feeling more relaxed or targetting something specific like acupuncture for hot flushes. Others may take time to be effective, such as counselling, and things may get worse before a positive effect is seen.

Getting the timing right when trying a longer term therapy such as counselling is key, as acting too soon after diagnosis may result in a negative experience which may be off-putting for later when the talking therapy may be more useful. The trauma of a breast cancer diagnosis may take some time to process, and trying to crystalise our feelings may be harmful if taken on at a time when numbness is a useful self-protection mechanism. A good therapist will help us to make the right judgement at the right time.

Self-awareness can be profoundly liberating when achieved via counselling, CBT, psychotherapy or other kind of talking therapy, but it can also be very challenging work. We have to be ready to face our fears, to dig deep inside and look at what we have been through, what it means to us, now and in the future.

Our members have all had a primary diagnosis of breast cancer and many are living with a secondary diagnosis. Many reported finding the relaxation therapies very helpful both during and just after treatment, Reiki and reflexology proving very popular. Many cancer hospitals and centres offer these types of therapies to cancer patients free of charge and many of our members took advantage of this. Massage is also very relaxing, but many beauty salons and spas won’t offer massage to people who’ve had cancer without a letter from a GP or other medical professional, so it’s worth being aware of this when inquiring.

Sound therapy has been tried by a few of us and has helped considerably with fatigue. Herbal remedies have been used alongside our traditional medication to enhance healing and wellbeing and to counteract the side effects of our post-cancer medicines.

Some of us have shied away from complementary therapies, perhaps seeing themselves as someone who ‘just wants to get on with it.’ Personal wellbeing practices such as meditation and journalling are helpful. Others have taken a ‘bury my head in the sand’ approach, believing they don’t need or wouldn’t benefit from additional help. Calming meditative activities such as crochet, knitting and sewing are popular, providing both focus and distraction. Some of us feel that exercise is our therapy, we run or practice yoga or walk in nature.

Some of us are unclear on what therapies might be available and whether we have access to them as cancer patients. Many centres continue to support patients for up to 5 years after diagnosis, and those with a secondary diagnosis may find they have open access to their local centre. However some centres only actively offer complementary therapies during and just after treatment and this may not suit us, particularly if we are working as much as we can through treatment. Therapies offered vary considerably by region, and sometimes we may decide to find our own private therapists. It is key to trust the therapist and believe in the treatments undertaken. For some of us, we want to go to therapists who have been through cancer themselves, and/or have had specialist training in working with cancer patients.

Counselling is generally offered as a series of six sessions which may not be long enough to be fully effective, and as private counselling is expensive this can be a problem. Scratching the surface and opening up deep wounds but not following them through may leave issues unresolved once the counselling stops. Some of us have had unpleasant experiences with therapies, and it’s worth taking the time to find the right one at the right time, and to check qualifications of the therapist.

As a group we believe that psychological help should be part of the package of treatment following a cancer diagnosis, with much better information about how to access complementary therapies and what they can do for us. Counselling can be helpful even many years after diagnosis, and relaxation therapies provide an ongoing support for wellbeing whatever stage we are at. Self-care is so important following a cancer diagnosis and many of the relaxing therapies give us time and space to focus on our wellbeing, to feel cared for. It’s not necessarily about being pampered, although this can feel good, it’s more about the support and kindness of another human being.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please leave your name in the comments or send us a private message.

Why some emotions are harder to experience after Breast cancer Diagnosis

'The uncertainty we are left with, the ambiguity we are trying to process, the side effects we have to deal with and the positivity we need to live up to. There is so much going on.'

Why are some emotions harder to experience after a breast cancer diagnosis, and others easier? Does it have something to do with protecting us from emotional distress?

As you might expect from a group of women who have all had a breast cancer diagnosis, some primary and some secondary, we all find intense emotion triggered by hearing about cancer, reading about cancer, talking about cancer, even adverts about cancer on tv. What surprises us, sometimes, is the unexpected rush of head-on emotion that we are confronted with, often when we are in situations which make it difficult to deal with. Some of us described having to withdraw from situations or conversations in order to take a few deep breaths to stabilise ourselves, to manage the threatening panic that wells up inside us. Our post-cancer brain is on high alert and wants us to run away from anything cancer related, flight being preferable to fight in social situations where we need to maintain our decorum.

The trauma that is caused by a breast cancer diagnosis weighs heavily on the brain. We want to make sense of what we’ve been through, we want to come to terms with it and its impact, but sometimes our need to process what’s happened is just too much for us to cope with in the moment. At these times, our brains will simply shut off the experience and we find ourselves numb and dissociated, distanced from our own suffering in order to allow our broken brain to deal with whatever is in front of us. Our fear is so intense that the brain builds a wall which is a barrier to our emotions. Sometimes we break through the wall, and as time goes on we may find emotions hit us like a train, causing upset that demands we plug the hole in the barrier and leave the emotions firmly shut away from view. As a result we may find ourselves living with conflict and contradictions in our own head, wanting to understand, accept and even make friends with our experience, yet being unable to face the fear which threatens to overwhelm us. Our feelings may become out of synch with our current experience, with sadness flowing over us when we are in beautiful surroundings or living with continuous low level anxiety.

Our members described a huge raft of different emotions which we struggle with, not least anger which sits alongside the cry of why me? Why can’t I move on? Guilt at surviving, guilt at the pain our cancer causes others. We are angry that we didn’t get the support we expected and needed during treatment, that we are not getting the support we need now. We are angry that our bodies let us down.

Self-awareness is strong for our members, many of us having worked with counsellors and psychotherapists in order to process our experience of breast cancer. However, self-awareness may not be enough as our brains will act to protect us without us knowing and this can cause confusion and can lead to depression. A downward spiral of feelings we can’t own or process that overtakes any rationality, with fear dominating our waking thoughts. Our fear may lead us to disengage from anything that forces us to feel strong emotion and we find ourselves living at arm’s length from our feelings and distancing ourselves from life rather than immersing ourselves. Some of us reported evaluating our emotional experience rather than allowing the emotion just to be there. Living in black and white rather than in colour.

There is an external pressure to put on a brave face, to be positive, all the time. However many of us don’t feel positive about our cancer, although we can be positive about the day to day of our lives. The uncertainty we are left with, the ambiguity we are trying to process, the side effects we have to deal with and the positivity we need to live up to. There is so much going on. On the outside, we are smiling, positive, in control. On the inside, we may be isolated, lonely, terrified, sad.

We may be at our most vulnerable at the end of treatment for primary breast cancer. The chemotherapy, surgery, radiotherapy is finished. We are sent away, possibly with a packet of pills depending on what type of cancer we have, to get on with it. The structure provided by appointments is gone. Now we have time to think, time to process what we’ve just been through. Our emotions are heightened, just as everyone around us is congratulating us for being brave, lucky, strong (and all the other platitudes) and aren’t we glad we can get back to normal life now? It’s very common for depression to hit us like a stone and we may feel totally bewildered. We may find it hard to sit and think about our cancer, as thinking about it makes it real, and while we were on the treatment rollercoaster we didn’t have to acknowledge it was happening to us, we were just doing as we were told, not feeling very much at all, we were too busy.

Many members commented on how useful it is to have the safe space that is our private group where we can tell it like it is with no fear of upsetting anyone. We all want to protect our loved ones from how we really feel, we don’t want them to be feeling our fear. In time, many of us are coming to terms with what has happened to our bodies and the mental scars left behind. As one member put it: we move on to find joy in the simpler things despite being quick to anger. The depth of our emotion means we can move from elation to sadness in a heartbeat, holding both together with our fragility.

We may be broken, but we are here.