Weekly Discussion Summary ~ How Do You Talk To Children About Breast Cancer?

In this week's discussion, we shared our experiences of talking about our breast cancer diagnoses with our children which highlighted a universal, instinctive and over-riding wish to shield our children from the fears and uncertainties that a cancer diagnosis inevitability brings into their lives.

How do we help our children cope? How do we find the words to explain a complex and frightening disease? How do we choose words so not to mislead? How do we give our children confidence at a time when we ourselves are likely to be dealing with overwhelming fears and the physical demands of treatment?

These are some of the questions our members, with children between infancy and adulthood, are grappling with. We touched on the demands of parenting while living with a life-changing illness, and our joy in being with, and caring for our children. Some of us had experienced multiple diagnoses or are living with secondary breast cancer, which meant that our children were exposed to further, or ongoing uncertainty.

Our views on what to tell children varied depending on the stage we ourselves were at, the age, needs and personality of our child, and our own views as a parent. Some of us favoured openness whereas others were more reticent about sharing worrying information. We also realised that just like us, children take their experience of cancer forward with them, and it's a subject they may come back to again as their understanding of the disease changes, or memories and new questions are triggered by media stories.

From a psychological perspective, Naz encouraged us to consider that the more our children can talk about their fears, the more resilient they become as we can support them to prepare themselves for their future.

We heard that talking, writing and confiding in a trusted adult are all tools which can give our children the strength they need to deal with the uncertainty they face. If we can talk about issues, in a simple and honest way, while believing in our own resilience, then we can strengthen our relationship with our children, whilst opening up avenues to make the situation easier for them.

We learned that there is no golden standard, or rules, to say what works and what doesn't – it’s all about managing, confronting, and accepting. While it certainly is not easy, we all wanted to help our children to express and manage their fears - whatever their age.

It was incredibly painful for us to accept the potential vulnerability that our cancer imposes on our children. However, we learned that our children are more resilient than we think they are, and although some of us described our diagnoses as having a profound impact on our children, we also heard how, with time, and support, it was possible for them to come through these dark times and thrive.

Attached is an article which paints a beautiful and moving picture of how a mother explains her depression to her toddler, offering a parallel to the complexities of talking about breast cancer; '5 top tips' from Macmillan, and a link for rethink, a service which aims to raise awareness of cancer in schools:

https://www.washingtonpost.com/news/parenting/wp/2015/10/08/mommys-boo-boo-explaining-depression-to-a-toddler/?postshare=2411444403951250&utm_term=.80197e21dce7

http://www.huffingtonpost.co.uk/laura-rentoul/tips-for-talking-to-children-about-cancer_b_10332142.html

http://rethinkcancer.com/

#ResilienceDiscussion

Weekly Discussion Summary ~ Loss of a Friend or Loved One to Cancer

In this week's discussion we shared our feelings about the loss of a friend or loved one from cancer.

We all described feelings of intense sadness and how deeply we are affected by the loss of someone with cancer. For some of us there is numbness, which can shield us from our most painful emotions. Others described feelings of guilt, or worry for their own family and friends and some of us shared that they had needed to withdraw from groups and forums. We also acknowledged that our immediate reaction is often a combination of sadness, mixed with deep fear for ourselves. We realised that underlying our grief is the obvious - yet unspoken - fact that we are reminded of our own vulnerability, something that we carry with us, yet often suppress to keep going. This uncertainty, adds to our fear, which can then make us extremely apprehensive about the future.

More than loss though, was the importance of our friendships with one another, the way we enrich one another's lives through our shared experiences and our understanding of one another's feelings and fears. We all felt this was a positive we had taken from our experience of cancer. Our discussion concluded that while there is loss, we gain so much more from our friendships with one another and there is love, which outweighs the sadness, and which we carry forward with us.

In relation to our psychological resilience, the question we asked was what is the best course of action?

Naz told us about George Bonanno, a profound Research Professor of Psychology, who has written a book called 'The Other Side of Sadness'. In it, he outlines evidence from longitudinal studies showing that people who allow themselves to grieve and express emotions associated with the trauma have better psychological and physical health in the longer run.

As our discussion highlighted, there is no right or wrong way to experience fear, sadness, and grieving for our loved ones, but if we allow ourselves to get closer to our emotions, our 'hurt', then this evidently has beneficial effects on a number of levels. This is the opposite of denial, and of course needs much flexibility and strength to know how to down regulate our emotions when we feel ready to move forward. Grieving, and acknowledging our fears can only give us the strength to move forward.

For interest, here are two blogs on the bonds of friendship between those living with cancer and its effects. One by our very own Tamsin, the other by Kira Goldenberg:

http://www.huffingtonpost.co.uk/tamsin-sargeant/the-living-infinite-frien_b_11996066.html

https://www.theguardian.com/commentisfree/2016/jun/23/cancer-survivors-bond-grief

#ResilienceDiscussion

Weekly Discussion Summary ~ The Impact of Breast Cancer on Partners

Our weekly discussion explored the impact of our cancer diagnosis on our partners, with a focus on our relationships, including the support, or lack of it in some instances, that was received from partners during diagnosis, treatment and beyond.

The experiences of our members were diverse, with some relationships breaking up because the partner was unable to cope, and others becoming stronger and closer following the illness. Some experienced their partners shying away from engaging with the treatment, others' partners attended every appointment and became carers. Some of us felt guilty that partners had to take over practical tasks such as housework or childcare, and expressed their worries for their partner, and that their illness might make them a burden.

The article Spouse Support Doc outlines the important role supportive partners play in helping their partners with breast cancer. More than this, irrespective of whether partners ARE or AREN'T supportive, they also need support and psychological care in their own right. Not only would this help partners to address their own needs, but would also help us, because we could be more open about our feelings, and this in turn fosters healthier relationships.

Those partners who did have support did a better job at supporting their partners with breast cancer, and this lowered psychological distress as well as depression for both of them. It was a challenge to consider how our cancer experience has affected our partners' emotional wellbeing, because our own needs can feel so overwhelming, however, the research concludes that partners deal better with the breast cancer diagnosis if they receive some kind of psychological assistance, even if it's just a friend or family member to talk to.

The husband of one of our members has written a book about his experience: you can read it here: https://www.amazon.co.uk/Coping-Your-Partners-Cancer-Husbands-ebook/dp/B01LXU5WI6

Profits will be going to charity.

#ResilienceDiscussion

Weekly Discussion Summary ~ Cancer and Anti-Depressant Use

This week's discussion was triggered by this article posted by one of our members highlighting that the use of anti-depressants amongst those diagnosed with cancer is double that of the general population (1 in 5 compared to 1 in 10).

Some of us shared that we'd found anti-depressants a great help, others were adamant that we don't wish to use them, although even those who have abstained so far were clear they would consider them. Experiences of taking anti-depressants varied, from providing clarity at one end of the spectrum, to masking reality and numbness at the other. The difficulty of coming off medication due to withdrawal side effects was also highlighted.

What is clear from our members' contributions is the immense psychological challenges that accompany a cancer diagnosis. Many of us have sought help for low mood and anxiety, others have experienced fatigue and long term pain, many had been given anti-depressants - sometimes because they felt that there was little alternative. The end of treatments like chemotherapy/radiotherapy/surgery was identified as a vulnerable time, accompanied by and a sense of feeling lost and being cast adrift. We also wondered about the psychological needs of those living with secondary breast cancer.

Though we would never want to take away any strategies for coping, we think it is important to highlight the contradictions, and controversies in relation to anti-depressants, including the lack of understanding about the mechanisms by which they 'work'.

While we need to cope as effectively as we can, and we need to survive, Naz told us that the longitudinal 'effects' (or lack of) in these drugs are problematic - we expect the brain to take over after a course of antidepressants, but what happens? Many people need to go back on them again. We also don't know how they affect cognitive function.

We all feel that more holistic and longer term support is required to help us with the breadth and depth of the psychological adjustments required and identified the importance of our group as a safe place to share our feelings.

http://www.everydayhealth.com/cancer/living-with/high-rate-antidepressant-use-after-cancer/

#ResilienceDiscussion

Day 31 #pathways2resilience ~ Review

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

As October draws to a close, we also reach the end of our month long project #pathways2resilience and for our final post we are celebrating our unity when faced with adversity.

Our private group is diverse and our members are extremely supportive of one another. Over the summer this year we held countrywide meet-ups so we could connect in person with the friends we’ve made within the online support group. The meet-ups were a great success and friendships were firmly reinforced.

We feel extremely honoured to have been able to share some amazing stories throughout this month….a mere snapshot of the many strong and spirited members we have and this feature has highlighted the many different ways in which we strive for resilience in the face of breast cancer. 

We started the month with Naz’s story and her vision for paving a pathway of wellbeing towards resilience and cognitive flexibility which resulted in the birth of the centre last year. Following this we had the privilege of sharing the daily stories from our members who are blossoming in creative talents such as photography, writing and art, sporting talents such as cycling and running, those who support charities by campaigning or fundraising, those who shared their innermost thoughts and wisdom and we heard from those who live every day with incurable secondary breast cancer. Each and every post has been published here on Panning for Gold.

We wish to thank those involved in #pathways2resilience and we hope everyone has been captivated by the stories from these remarkable women. We’d also like to thank those who have commented on and shared posts, which all helps to spread the word of the work we are doing at the Research Centre for Building Psychological Resilience in Breast Cancer.

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 30 #pathways2resilience ~ Tamsin

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Daring to Disturb the Universe…

In today's post for our month long feature #pathways2resilience, Tamsin shares how meeting Naz, Vicky and the support of women in the group led her to find the courage to submit a blog to HuffPost UK.

~

When Naz asked me to help with administration tasks associated with the Centre for Building Psychological Resilience in Breast Cancer in November last year, I might have said no, because, like anyone, I find there aren’t many spaces in my life, filled as it is with work, being a mum and keeping my post-cancer-body in line. But as it turns out, I’m still not very good at saying no, and maybe that isn’t a bad thing.

I’ve always been a quiet kind of girl, a stage-hand rather than an actor, so I’m still not quite sure what happened at about 3.30 p.m. on Thursday 31st March 2016 when I dared myself to try and write a blog worthy of being featured by the Huffpost UK. Earlier that month, while recovering from surgery, I had spotted a blog by the wonderful Laura Dodsworth hosted by Huffpost UK as part of a month-long project entitled ‘All Women Everywhere.’ Having thoroughly researched a number of on-line blogging guides for Naz so that she could submit a blog highlighting her work, I knew I had to come up with 700 or-so words in an opinion-led style on a topical subject.

In a mere hour, seemingly from nowhere, I wrote ‘The Gift of Fear - Or How Fear Saved My Life.’ This was followed by an agonising 30 minutes of procrastination about whether or not to send it off - Do I really want to do this, I wondered? Is it even good enough? Why would anyone be interested in anything I’ve got to say? How would I feel if the Huffpost UK were to say NO? Ironically, it was this fear which prompted me to hit the send button at around 4.55 p.m., with five minutes left before the project ended. After all, I decided, it would be too great an irony to allow fear to prevent me from daring to submit a blog about fear.

I’ve tried hard to get to a point where I see my experience of cancer as one of many chapters in the book of my life. But the truth is that when I found out I had a BRCA1 mutation, I felt like cancer was not only in the pages of the book of my life, it was in the ink and the spine. You see, every cell in my body is unable to make a protein that inhibits tumour growth of certain cancers and I’ve had a rare, aggressive breast cancer, not once, but twice. Between 2009 and 2012, I was on chemotherapy for over 9 months, had radiotherapy for 6 ½ weeks, and underwent 7 major operations, 3 of which led to me being in HDU, one during chemotherapy. At one point I was so traumatised by my experiences of surgery and post-surgery that I became afraid of sleep, suffering from terrifying lucid dreams, half conscious and unable to move. Outwardly I was positive, and many aspects of my life carried on as normal, but I just didn’t dare to feel my grief, my loss, my pain.

Looking back, I think I became mute as a result the shock of these experiences. So maybe you can understand then what it means, not only to be able to write about aspects of my experience of cancer, but to have my meagre offerings published - I feel as though I have learned to speak again.

I could never have imagined how much the course of my life would be altered by my friendships with Naz, Vicky and the women in our group. I could thank Naz and Vicky for so many things, but what I thank them, and Anita, for most, is for helping me to find the courage to be daring, to be bold and to dare to disturb the universe - just a little.

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 29 #pathways2resilience ~ Sarah-Jane

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Today for our month long feature we are delighted to share Sarah-Jane’s story.

~

October, - Breast Cancer Awareness month, the month that seems to symbolise moments of reflection for me. It is nine years since I was diagnosed with Breast Cancer and there are times today, when I look back, that I feel it is unbelievable to think I experienced something so absolutely harrowing; that a tiny lump in my left breast would cause so much heartache and pain: that my contented life was momentarily turned upside down in a split second.

It’s true, no matter how far down the road you may be from your diagnosis, how you wear a continuously radiant smile because you are fortunate to belong to a group known as the survivors, and continue to be one of the lucky ones, you are reminded of all that you went through, but equally of just how far you have come in rebuilding your life. I write that sentence with my fingers and toes crossed and pray this will always be the case. I also find myself taking a moment to think of all those who have not been as lucky as me, those that face a secondary diagnosis and live every day with enormous strength and bravery along with huge uncertainty.

I believe the majority of people faced with such a devastating diagnosis of hearing the petrifying word ‘cancer’ quickly cascade into a lonely, terrifying deep and dark black hole where the heavy clouds prevent any glimmer of light to touch you. Your carry all of your fears on your shoulders and you feel as though they will never be lifted. Then you start on the treadmill with treatment, most commonly surgery, chemotherapy, perhaps radiotherapy. We lose our femininity. For me, initially, it was my breasts, then my hair, then chronic bloating a common side effect of chemo. Every wave of emotion was felt. Then miraculously, almost in what appeared to feel like a few moments the light began to penetrate the darkness -unknown opportunities quickly blinded me. I emerged strong, ironic that you are faced with adversity to realise your inner strength and real potential. I wanted to share my own experience to educate some but also to empower others and inspire those who are about to begin on their own breast cancer journey. That journey is a tough one.

It felt like my breast cancer journey was a long one. Complicated by my previous childhood cancer when I was only sixteen years old. I was diagnosed with Hodgkins Disease or Hodgkins Lymphoma as it more commonly known these days, a cancer of the Lymphatic system which affects the white blood cells. At 16 I faced rigorous chemotherapy followed by pretty horrific radiotherapy which was given to me every day for six weeks. People have asked me frequently how I actually felt facing cancer as a child. The truth is I felt as if my parents protected me from the serious consequences of a life threatening illness and I didn’t fully comprehend such a diagnosis until I was diagnosed at the age of 36 with triple negative breast cancer and a mummy to two young daughters. That’s when I fully comprehended the extent of what cancer was capable of within the body and psychologically and what major impact it would have on my future life. It’s true to say, like many others faced with any kind of personal misfortune, I am determined and there have been many occasions that I have needed to prove this in life. It was my encounter with breast cancer that made me passionate to try and make a small difference to the lives of those facing a diagnosis today.

As soon as I reached the end of my treatment, which incidentally involved a full mastectomy with immediate free tram diep flap reconstruction, followed by 8 sessions of chemotherapy, a preventative second mastectomy again with immediate Igap reconstruction which actually failed and was followed a few months later with a second Igap reconstruction which took a very long 26 hours in surgery for my surgeon to perform, I was adamant that I wanted to go and try to help others as I want their experience to be a positive one. As bizarre as it may sound I felt as though I had been very lucky to have an amazing medical team around me who also had access to ensure that I was given the best care and the latest drugs that were available at the time. A classic scenario of wanting to give something back for the amazing care that I had received.

Research is vitally important to me. We need to improve the quality of life for patients going through treatment so I chose to support an amazing charity called Breast Cancer Now as they specialised in the area of research amongst other things. Not being a runner at all I thought I would compete in the London Marathon to raise much needed funds exactly 12 months from the date of my end of treatment. I learnt then, that the mind is incredibly powerful when pushed to the absolute maximum. How I trained for it will probably remain a complete blur especially as I was a total novice but I did complete it with huge satisfaction that the pain was worth it as I managed to raise over £10,000, and that was the focus that inspired me putting one step in front of the other!! I still don’t know how I actually did it, but I have a little medal that I am extremely proud of that reminds me that my dedication to the cause was definitely all worth it.

So the marathon was me giving something back to research. Then an opportunity came to set up a local support group for the charity Keeping Abreast for the Hertfordshire and Bedfordshire region. Primarily to offer support to ladies considering breast reconstruction following their mastectomies. I absolutely love it, especially meeting new people and helping them through their surgery and beyond. It is something that I am really passionate about as I feel like we are supporting the ladies through a very daunting and difficult time and we all feel within the group that this is rewarding for all of us. We love our fundraising too which allows us to provide patients with a bra voucher after their surgery just so that they can treat themselves to a new bra to try and help them feel special and feminine when they have healed.

My cancer experiences, especially breast cancer has allowed me to grow in ways that would never have been possible previously. I was such a frightened vulnerable patient who required constant reassurance that I really would be ok. Cancer has taught me to be many lessons. I am so grateful to everyone who helped me reach where I am today. I have met some equally inspiring ladies, some are involved in this group as well and it has been so moving to see them come through their ordeal and go on to help others too with such a selfless approach.

I did go on and write my ‘life story’ in my book called Worms on Parachutes, which is my thank you gift to the NHS who have helped me to be where I am today. If you do get an opportunity to read it I know you will love it, as many ladies who have shared their thoughts with me have expressed just how helpful they found reading it.

https://www.amazon.co.uk/Worms-Parachutes-Mystical-Allies-Survival/dp/1482058111/ref=sr_1_1?ie=UTF8&qid=1475181631&sr=8-1&keywords=worms+on+parachutes

I hope you enjoy reading this little piece during Breast Cancer Awareness month.

Lots of love

Sarah-Jane Phillips

  

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness