Everyone needs to know that they are cared about. It is one of the basic human needs. We need food, water and to be cared about. And at no other time is it as important to know this, than when diagnosed with cancer and making …
Surviving cancer is as much about catching it early and being positive about the outcome, as it is about the treatment. I am Carolann Bruce, and I am a breast cancer survivor, but only because I refused to take no for an answer. A dream …
Laura is a mindfulness meditation practitioner, leading group and one-to one sessions in both the private and voluntary sector. For more information, visit www.lauraashurst.co.uk
A worrier from childhood
I have always been a worrier. That natural ability that we all have to worry about things seems to have accompanied me for as long as I can remember. I can’t recall a time during my childhood when I didn’t worry. When I dealt with one worry, I would lie in bed and think about what my next worry would be whilst my twin sister slept soundly in the bunk bed above me. Lizzie used to sleep on the top bunk because she didn’t wet the bed and I did. I think my worrying and bed-wetting were very good companions. Why am I telling you this?
Being open about being a worrier
I’m telling you because I’m no longer ashamed, not about me wetting the bed, although I’m not ashamed of that now either and growing up I used to be, but about me being a worrier. I spent so many years trying to cover up my worries; lots of them would have appeared trivial and ridiculous to other people. I worried about what people would think of my worries.
As you can see, the level of attention I gave them extended to them being protected from the opinions of others. It was time consuming, life robbing and totally destructive. My carefully honed exterior appearance worked extremely hard to cover up what was going on inside my mind. I became very skillful at masking how I was feeling. My worrying habit’s crippling effect was a well-kept secret.
And then, aged 34, in the summer of 2001, when our daughter Megan was 3 and our son, Jack, was six months old I found a lump in my right breast when I was in the shower. Within three days I was being examined by my GP, who felt the lump and suggested that what I’d presented with was probably benign and ‘nothing to worry about’ but that she would refer me anyway for further tests to get a definite answer.
Waiting for a diagnosis: permission to worry
Telling a worrier not to worry is like taking an ice cube out of the freezer and expecting it not to melt. Of course I worried, excessively, (worriers don’t like the word ‘probably’) whilst at the same time trying to convince myself that it was going to be ok. Anybody reading this who has walked in the shoes of ‘have I got cancer or not?’ knows the amount of bargaining that goes on at this potential pre-entry point into the cancer world.
Suddenly I felt normal because wouldn’t everybody, albeit at varying levels, worry until they got their definitive results upon finding a lump? I was given a glimpse into a world where it felt like my worrying was being given permission to flare up and in a very odd way that felt calming to me.
Being told I have the ‘best type of breast cancer’
I had no idea what ‘ductal cancer in situ – micro-invasive’ meant when the results came back, but kept hearing, ‘that’s the best type of breast cancer to get’, which made no sense to me at all. Nothing that I read or heard made me feel any better. My diagnosis had the ‘c’ word in it. That was my main point of focus and of course I blamed myself.
The judgmental aspect of being human that my worrying had significantly developed for me over the years arrived easily at my front door. Sampling of twelve lymph nodes showed no subsequent evidence of cancer cells. A lumpectomy, and 25 sessions of radiotherapy followed which was the recommended course of action.
The worry doors were now very firmly wedged open to what if, and when, worry routes into the mental corridors of my mind. And all the while I wasn’t capable of caring for my baby son or my daughter properly. Worries about being a terrible mother plagued me whilst on the radiotherapy plinth.
Another primary breast cancer diagnosis followed by a secondary breast cancer diagnosis
A condensed version of the next six years included another diagnosis of primary breast cancer and a diagnosis of secondary breast cancer in December 2007, six weeks after my 40th birthday. Life had dealt me a card that included an inbuilt ability to worry about my own shadow along with two primary breast cancer diagnoses and a Stage 4 secondary breast cancer diagnosis by the time I’d entered my fourth decade.
Creating a mindfulness toolkit
I was referred to an amazing clinical neuropsychologist, Dr Annie Hickox from whom I continue to receive mental health support. Alongside that, I discovered mindfulness and its ability to totally transform the way that thoughts, feelings and emotions can be viewed, with some distance created between you and them, so that the huge ball of worry that’s so very easily created in our minds can be managed much more effectively.
My mindfulness took kit includes self-kindness and self-compassion; hugely welcome tools that have the ability to make me feel nurtured and supported as opposed to the destructive nature of self-sabotage and self-loathing created by excessive worrying. It has been life enhancing and given me a renewed sense of self in relation to the body I inhabit, an awareness of reacting rather than responding to repetitive thoughts, and importantly, it’s given me choices.
What mindfulness has taught me
Mindfulness has taught me that I can choose to spend every day worrying, becoming more and more tangled up in my thoughts, missing so much of what goes on around me as my worries gnaw into my precious time or I can choose to be mindfully aware of and acknowledge my thoughts and feelings without becoming overwhelmed by them, helped along by my breath as a constant anchor. Mindfulness allows me to live presently.
Living with secondary breast cancer
I have been living with secondary breast for 13 years. I currently reside in that most luxurious of places called stability where every person living with Stage 4 cancer aims to be. The privilege of being stable and still alive is not lost on me as I reflect on the median survival rates for secondary breast cancer. Gratitude is one of the fundamental pillars of mindfulness.
I am hugely aware of just how fortunate I am that the aromatase inhibitor drug Letrozole is currently controlling the nature of my metastatic disease whilst Zometa is supporting the damage that long-term exposure to it has caused to my bones. And, I’m aware of course that nothing lasts forever. Whilst this drug is working well now, nobody knows what the next round of tests will show.
Daily mindfulness and mindfulness meditation helps me to enjoy each day full
Practicing mindfulness and mindfulness meditation daily is helping me to enjoy each day fully. It’s helping, knowing that whatever the future holds for me, I haven’t wasted precious time being bound and chained by the heaviness of my excessive worrying. I am living, and I will not allow my worries to live my life for me. The hamster wheel of worry and rumination is often still present but now I choose how fast it spins.
Laura is a member of the ambassador team for the Building Resilience in Breast Cancer Centre led by Professor Naz Derakshan where she leads monthly mindfulness meditation sessions for its private Facebook members. She is driven by the need for women to be fully supported to develop their emotional resilience following a diagnosis of breast cancer.
Laura is a member of Cancer Research UK’s Cancer Campaigns team where she has been involved in lobbying the government since 2011 in a range of campaigns to help cancer patients receive better standards of care and treatment. Laura has also campaigned on behalf of people living with secondary breast cancer with Breast Cancer Now as part of their Secondary Breast Cancer Campaign Group. She is a professional speaker, talking publicly about her experiences of living with secondary breast cancer.
Emma Herring is a freelance writer, editor and communications consultant. She was diagnosed with breast cancer in 2017. A routine mammogram leads to a shock diagnosis My cancer was the birthday present you never want to receive. Having reached the age of 50 and celebrated …
As a Breast CNS Team in a large NHS Trust, we see breast cancer patients who we support from screening, diagnosis, treatment and beyond. Our role has changed over the years and non-more so than in the last twelve months since the coronavirus pandemic hit us.
We have had to adapt and adjust how we manage patients, developing new ways of supporting our patients with minimal face to face contact. In addition the support mechanisms around us have also had to change and this has impacted in our ability to refer to networks, counselling and charities.
The support offered to women in these situations can vary but in normal times would include specialist nurse support in clinics and onward referrals to counselling or community teams. Information leaflets are available and with professional and family support the majority of patients simply get on with their life changing experience.
Issues often arise once treatment or regular contact with a service stops. The patients may feel abandoned or left to cope on their own, unsure of where to go with that uncertainty or question that feels trivial but also important.
During the last twelve months life has been different for all of us but especially those with a cancer diagnosis. The adjustment to having little or no social contact and the informal support networks we all use have been restricted. The feeling of isolation becomes a real issue, who can these women turn to for support and advice in a ‘no contact’ world.
As a team we have seen an increase in the number of patients diagnosed with primary, secondary or metastatic breast cancer under the age of 50 years, (many with young children) we recognised this has the potential to add another layer of anxiety in an already challenging situation.
Just how do you juggle chemotherapy with home schooling?
The CNS team has found this a challenging time and recognised the gaps in support for these women – both in a professional and informal way.
Moving forward we want to make sure women are supported, that they have the right information to make informed decisions – it’s what we would all want for our family and friends.
We felt what was needed was ‘time’ – a time for them to talk, – about themselves, as themselves with no judgment.
To talk about how they were coping, with cancer, with the housework, with cooking, with childcare. We want to give women the opportunity to bring along their young children so we could develop ‘family centred’ support.
We want to provide a way to Navigate the conversation, keep the communication open and honest so that it becomes okay for the children to be inquisitive, so they can learn about mummy’s cancer, why mummy’s hair has gone, why she is napping a bit more today, why we can’t go to the playground.
Our second focus, is Resources………….
What more reading material can we provide to our patients and what is available that we haven’t used before.
We have found a huge variety of books, blogs, phone apps, charity websites, learning kits and flash cards! We recognise the use of more interactive tools is useful, being able to sit down with them in clinic and talk about individual family needs where we can work out how they might adjust their language and explain to their children more about mummy’s breast cancer.
We recognise that this support and resource isn’t offered as standard, and may account for more negative outcomes and experiences.
Our vision is to make this part of our core service provision.
We have applied and are currently waiting to hear about our application for a charity grant to support and take this initiative forward – this it is just the beginning………………….We want to be able to provide family centred support to other cancer groups, not just breast.
But for now, we want to set up our service, allow it to develop and grow, directed by our patients and what works best for them. We want to prepare our patients for open discussion and sign posting to appropriate resources for their individual needs.
We are very excited for the future and look forward to bridging the gaps in support and to better meet the needs of our patients facing breast cancer in a holistic and family centred way.
This guest blog is from Mary Huckle, in which she talks about how she told her 10-year-old twin girls and 14-year-old son she’s been diagnosed with cancer. She shares her tips for dealing with children of this age group. 7 Things to Consider When Telling …
Motherhood is hard enough without a cancer diagnosis!
In a time of pandemic, being confined to our homes, home schooling and wearing countless hats of not only parent, but teacher, entertainer, friend, sibling, chef and cleaner, having a ten-year-old pre tween daughter and going through a fourth cancer diagnosis, have certainly tested my resilience and patience to a new max!
A bit of background
I always wanted children, lots of them, but after my second diagnosis back in 2012, I was put back on tamoxifen for a secondary oestrogen receptive breast cancer in my clavicle and told I would have to ‘wait and see’.
Collecting my then 18-month-old daughter from my parents, on the day of diagnosis, was one of the hardest and most emotional moments of my life. Having had my first breast cancer diagnosis before marriage and kids, I felt an unbelievable amount of responsibility. I had so much more to lose this time.
Between family members, paid childcare and friends, I navigated my way through surgery and radiotherapy, timing my treatment in her lunch time naps so she would be none the wiser that I was away. I was driven by a maternal energy to protect my child from the realities of adulthood and in an effort to be as transparent as we dared, we told her mummy had to have an ‘ouch’ removed by Dr Brown Bear (Die hard Peppa Pig fans I see you!)
My third diagnosis
When I was diagnosed a third time, she was three and her nursery and our family were incredible as I disappeared to hospital for a week, for my double mastectomy and reconstruction. She was my Chief Nurse when I got home and with grandparents galore coming to stay and help, she lapped up the attention, noticing that I was often in bed but that another ‘ouch’ had been taken away.
When I decided to have my hysterectomy Peppa Pig and ‘ouches’ wouldn’t cut the mustard. She was seven, more aware and with an understanding of hospitals and medicine. Her half term treat of a family outing to London became less exciting when told Mummy wouldn’t be able to go and rollerblading down the hospital corridors was tainted with anxiety and concern that Mummy ‘looked funny’ and ‘couldn’t get up smiling’. It was a new normal that, as a family, we have been managing ever since.
Our children pick up more than we realise
Our children pick up so much more than we realise. As a mother, I have a new appreciation of how my child sees me. I am the main care giver and when I need more care than she does, it upsets the balance on a massive scale.
Knowing how much my hysterectomy has affected her anxiety and awareness of cancer, my husband and I decided that when my PET scan results came back before Christmas last year, with a mysterious area in my clavicle again, we wouldn’t tell her anything until we knew what it was.
Since we were already living through a pandemic and homeschooling had presented more anxiety fueling situations for her, as a mother, my protective lioness roared into life yet again. I didn’t want to rock the boat any more than it was already rocking!
When I was finally told I would need surgery to remove the tissue for testing, as a biopsy in that area was too difficult and risky, we told her I was having a mole removed. This alone concerned her, but we reassured her it was routine and no big deal, that it was advised to keep me safe. We were bending the truth, but it gave me space to breathe and focus on myself, keeping my head clear to get through the surgery, Christmas and the wait for results.
My husband and I would wait until later in the evenings to discuss plans and talk through how we were feeling about it all. It was like living a double life! Being an only child, our daughter was involved in 98% of family chats and decisions, and no matter how guilty I would feel about this, I would remind myself of her wellbeing, her Christmas and her anxiety. I also had to remind myself that I was the parent! This was an adult situation and it didn’t make any sense to tell her until we knew what we were dealing with.
I am so glad that we made this decision. Now, three months on from what turned out to be my fourth breast cancer diagnosis, my treatment has only been to change medication and our daughter is none the wiser. It hasn’t been plain sailing but we have avoided bringing more anxiety into her life and protected her from more disruption and uncertainty not by outwardly lying but by limiting what we have exposed her to. In my heart, I know there is a big difference.
It’s a dance
Having had a breast cancer diagnosis throughout different stages of her childhood has been challenging but it has also taught me so much about parenting. It is a dance. When they are small you are dancing the Charleston; arms, legs flailing, fast paced, energetic and fun. As they get older, and pre tween, I find myself dancing more of a tango; serious, darker, defined boundaries and intense, so intense.
With each dance, the steps change and both parent and child have to adapt. Throwing cancer into the mix can certainly make it more intensive and areas such as secondary infertility and being an only child, genetics, menopause, puberty etc have and continue to play out.
Despite this, the relationship between a mother and daughter is a beautiful thing. She may mirror my anxieties and stresses and her frustrations may rub off on me, but our children are a part of us. They are our blood, sweat and tears. It took all of that to birth them into the world in the first place and they, in turn, push us to places that test and exhaust us. Without them, life would be so different. They are the reasons we fight. They are the reasons we get up on the harder days and the reasons we hold that medication in one hand and guide them over the road with the other.
Training as a post-natal doula for women affected by cancer
After my daughter started school I decided to train as a post natal doula, so that I could support other women affected by cancer in motherhood. It has been my calling and I adore it. Offering practical as well as emotional support to a woman who might be pregnant during or after a cancer diagnosis or who may have had a baby and then been diagnosed, is a special and unique path to tread, but I know how much I needed an extra level of support that would acknowledge the other anxieties and concerns I had about hormones, breast feeding, PND and PTSD and someone who could relate and empathise with that.
Motherhood is messy. It is big, it is scary and it is precious. Cancer will probably always shine a light on my daughter’s journey, but my story is not hers. She is making her own and though genetics will play a role in this story too, the medical world is advancing all the time. So, while she learns about long division and how to braid her hair, I learn to let go of what I can’t control and just enjoy the ride.
You can connect with Sam via:
Facebook: Unofficial Sam Reynolds
You’ve been diagnosed with cancer. The big question is… do you tell your kids? As parents we naturally want to protect our children from anything that might hurt, upset or worry them. It’s part of a parent’s make-up. If we could wrap our children in …
This guest blog is from Sara Olsher, founder of Mighty & Bright, a company in the US focusing on support systems for children who are faced with traumatic situations such parents going through cancer or a divorce. Here, Sara talks about why she started Mighty&Bright and gives some excellent advice for helping your kids through a parent’s cancer diagnosis and treatment.
What do I tell my child?
When I was first told that I had cancer, my first thought was my six-year-old. What would I tell her? How would she handle it? How would she deal with a long recovery, and even worse, if I died, what would happen to her?
I left the doctor’s office with a thick booklet titled, “a Woman’s Guide to Breast Cancer Treatment” and an absolutely blank mind. I’d gone into shock, and over the next several days I repeatedly convinced myself that the doctor didn’t actually diagnose me with cancer — I must have misunderstood.
After flipping through the booklet and finding zero information on juggling kids and cancer, I took to the internet and came up virtually empty-handed. Advice on talking to kids about cancer was sparse and vague, and I knew I was on my own.
Starting with a Book
Like many parents facing a tough situation, my first thought was to buy a book to explain cancer to my daughter.
Books are used the world over to introduce kids to hard things. Kids need (and like!) to have concepts repeated, and will return to a book over and over, relying on it to put their minds at ease. That’s why starting with a book is so helpful.
I had a few requirements:
- I wanted it to be straightforward and not scary, with friendly illustrations and no talk about death (I wanted that to be my job, and only if it was absolutely necessary).
- I wanted to explain the science of what cancer actually is. With my background in psychology, I knew that the truth would make it easier for her to cope.
- I needed my daughter to know that this wasn’t in her control. She didn’t cause cancer, and I didn’t want a book to imply that her hugs could heal it.
Six kids’ books about cancer later, I again came up empty-handed. I couldn’t understand why there were so few resources — and that’s when I decided to create my own.
When it was released, my book What Happens When Someone I Love Has Cancer immediately went to #1 on Amazon, a tribute to just how desperately parents needed it.
Taming the Chaos – my advice to you
- Kids rely on routines to feel safe; they need to know what to expect each day, and cancer treatment can disrupt everything. For my daughter, life started to feel chaotic. All of the things I used to do were done by other people, from school drop-offs to cooking dinner.
- To help kids feel safe, keep to a routine as much as possible. Keep their morning and evening activities in the same order, even if different people are helping.
- A routine chart that displays their morning and evening activities can help bring attention to the things they can expect each day.
- Creating a visual calendar became a big part of relieving my daughter’s stress. Just like a routine chart helps with daily activities, a calendar helps with weekly activities.
- On the calendar, I shared who would do school drop-off and pick-up each day and when I’d be having various treatments.
- I also tried to guess how I’d be feeling each day based on where I was in my chemo cycle. This helped her to prepare herself emotionally for days when I felt exhausted.
Speaking of exhaustion, it’s hard to stay connected when you’re too tired to do a lot of the activities you used to do together, like riding bikes or playing outside.
When I created a visual calendar for parents with cancer, I made sure to include stickers for quiet activities that are easy enough to do when you’re exhausted.
These activities can include things like playing cards, doing a craft, reading, watching a movie, or doing a puzzle. My main piece of advice? If you’re really tired, set a timer for 15 minutes and set your child’s expectations for the time limit before the activity begins.
Keeping the lines of communication open is crucial. By talking to your kids about your cancer treatment process using a book and calendar, you’re sending the message that it’s safe to talk to you about their feelings, which makes it less likely that they’ll keep any of their big emotions to themselves.
How to Know if your Kids are Struggling
Cancer is hard for the whole family, and everyone will take a ride on the Struggle Bus at some point through this process.
For kids, struggling can look like:
- increased or worsening tantrums;
- Fears that may or may not be related to cancer;
- Complaints of tummy aches and headaches.
If you start to see behavior like this, reiterate that they can talk to you about any of their concerns, and also make sure they know of other adults in their lives who are safe to talk to, like teachers, family friends, or relatives. My daughter told my mom and my boyfriend things she didn’t want to tell me, and their support helped her a lot.
Go Easy on Yourself
Ever since I started my company, Mighty + Bright, to help families through hard things like cancer, I’ve had parents facing all sorts of tough circumstances reach out and confess how guilty they feel.
Cancer is not something you are putting your family through. Cancer is putting you all through this. It’s not hard because you’re making it hard, it’s hard because sometimes life is hard. Release your guilt and go easy on yourself – guilt is the last thing you need.
Along those lines, I will leave you with this: No one gets out of life without hardship. Your kids are facing hardship young, but they are facing it with you there to hold their hand. You’re resilient, and you’re raising resilient kids. Good job.
This is a guest blog from the Fruitfly Collective about how to talk to and support your children throughout your cancer diagnosis. One of the reasons why it so hard to tell your child that you have cancer is the primal feeling of wanting to …