Tag: cancer

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 

Using movement as medicine after a breast cancer diagnosis

Using movement as medicine after a breast cancer diagnosis

We’ve all heard the phrase ‘movement is medicine’, but can it really help those preparing, going through or recovering from breast cancer treatment? Over the coming weeks, Sarah Newman, Cancer & Exercise Specialist and Breast Cancer Rehab Coach, will be discussing how to overcome and 

Surviving breast cancer: refusing to take no for an answer

Surviving breast cancer: refusing to take no for an answer

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 with two endings

When you hear the news, ‘You don’t have cancer. Go home and live your life,’ you’d think the relief would be overwhelming, but not for me. I had had a dream that foretold of breast cancer, and it depicted two endings. And I wanted survival. 

I had been having scary dreams for a while, but this particular dream plainly and graphically showed me as a cancer patient. It was so real that I checked myself when I woke up, and I found a lump. I had a negative mammogram, and a consultant said the lump was nothing to worry about, but I insisted on further tests. He assured me that all was fine, but I refused to budge. I believed my dream.

Knowing my body and sticking to my guns

I’m glad stuck to my guns because the doctor was wrong. I had cancer. Most people would have accepted the diagnosis and gone away, only to find out the truth when it was too late, but I’m stubborn, I know my body, and I just knew my dream was true.

That was the start of a long and gruelling journey. I’m a qualified nurse, but even I didn’t know what to expect and, to be completely frank, the treatment took me to hell and back. I wrote my book to try to support and inspire other women facing the same as I did. It’s a candid insight with more than a smattering of humour because let’s face it, we’ve got to laugh to get through it. 

Writing my book ‘The dream that saved my life’

I wanted to release my book in time for World Cancer Day on 4th February to help raise awareness of this awful disease’s impact. The book lays bare what a cancer diagnosis brings, but it’s also laugh out loud funny at times, too. The publisher says: ‘With one in two people now predicted to get cancer in their lifetime, The Dream That Saved My Life is, above all, inspiring and encouraging for anyone unfortunate enough to receive that chilling diagnosis.’ Thank you, Publisher, I’ll take that!

I think my book’s main message is that, as much as we trust and admire our doctors and nurses, you must listen to your body. Don’t take everything as gospel. Question your diagnosis and treatment, and discuss everything with your consultant as well as your family. Never forget – it is your life and your body. As graphic as it is in places, The Dream That Saved My Life’ is a book every woman should read. 

Carolann Bruce

The dream that saved my life is available from Amazon

April 2021

Cancer: the birthday present no one wants

Cancer: the birthday present no one wants

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 

The Osbourne Trust

The Osbourne Trust

Who we are I’m Emma and I founded and now run The Osborne Trust, the only national charity that focuses all of our support on the children of a parent with cancer. The Trust was launched in 2014 after my own cancer diagnosis aged 36 years with 

Navigate – a new support for parents

Navigate – a new support for parents

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. 

March 2021

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.

My daughter was 15 when I got cancer

My daughter was 15 when I got cancer

This guest blog is from Gloria whose daughter was fifteen when Gloria was diagnosed with breast cancer. I was 54 years old when I found a lump in my right breast. It was late September and in October 2018 I was diagnosed with breast cancer. 

Telling my children (10-year-olds and 14-year-old) I had cancer

Telling my children (10-year-olds and 14-year-old) I had cancer

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 through Cancer

Motherhood through Cancer

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.

And finally…

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:

www.mumma-baby-space-online.com

www.safespaceaftercancer.com

Instagram: @samspaces_safespaceaftercancer

Facebook: Unofficial Sam Reynolds 

March 2021

Cancer and Mum Guilt

Cancer and Mum Guilt

People talk about mum guilt a lot. It would seem that you have children and then the sense of responsibility leads to an enormous amount of guilt about everything. Am I doing enough with them? Am I over stimulating them? Are they eating enough fruit 

Fruitfly Collective advice on telling children

Fruitfly Collective advice on telling children

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 

Parenting with cancer (17 month old and 4 years old)

Parenting with cancer (17 month old and 4 years old)

Natasha had a four year old son and seventeen month old daughter when she was diagnosed with breast cancer and here she explains how she talked to her children about her cancer diagnosis and generally managed her parenting while going through cancer.

My diagnosis

When I was diagnosed with cancer in June 2017 my son had just turned four years old. My daughter was seventeen months old. It felt like the world was caving in.

Every time I looked at them, I was gripped by an all-consuming fear. I was terrified of leaving them; afraid of what the coming months would bring; and felt horrendous guilt for the sudden shift in their lives, the uncertainty that faced us all and the impact on them of what lay ahead. They were so small. My daughter still liked to sleep with me…….every night!! My son was only in pre-school.

We went to the pre-school graduation the weekend before my biopsy results were back and I watched his little friends sing their songs and graduate. I wondered would I be there the following year for his graduation. Never mind college graduations, I just wanted to make his pre-school ceremony!

What should we tell them?

And of course, the question of what to tell them. What should I say to these tiny little people whose Mum was suddenly sick? How should I tell them? What should I tell them? Should I tell them anything at all?

In the end, my husband and I decided we would tell the kids, well our son in particular, that I had breast cancer. My husband actually did the telling. I just couldn’t do it to be honest. He downloaded a book and at bedtime he sat down and told our baby boy that I had cancer.

He already knew that something was going on. There were visitors to the house. My Mum had barely left since my biopsy. I was going to hospital appointments, and Daddy was coming with me. People looked and sounded stressed. There was a lot of whispering when the kids were around. He knew something big was happening and he was worried.

My husband told him that Mammy’s breast (boobie) was sick, that it had something called ‘cancer’. He explained that because my boobie was sick I would have to go see the doctors a lot and would have to have some operations. The book he read was wonderful. It explained breast cancer in simplistic language that a child his age could understand. He knew that I would have an operation and that I would have to take some very strong medicine called chemo which would make my hair fall out. He also knew that I would be having treatment for a long time and would be tired and need to rest.

How we talked about cancer with the children

I never promised my son I would get better. Instead, I promised him I would work as hard as I possibly could with my doctors and that I would keep on doing my best to get better because I loved him so much. My daughter was 17 months old at diagnosis. We read her the book but she really didn’t understand as much. As time went on and she got bigger she understood more and knew I was sick and had to get “chemo medicine” and that I would be tired and feel ill sometimes.

We promised both our kids that no matter what there would always be someone to mind them, even if Daddy was working and I was in hospital. We told them we loved them both more than anything and that no matter what medicine I took or if I lost my hair, I was still Mammy and I would always love them and do everything I could to look after them.

Was it hard? Yes, to this day it’s one of the hardest things I’ve ever faced as a parent. To them I am Mammy, I am their protector, washer of clothes, singer of silly songs, maker of dinner, provider of snacks. I did not want to tell them I was ill. I felt I was letting them down, that I wasn’t doing my job properly and had failed them by getting sick. However, I also wanted to be honest with them, to tell them what was happening in words they understood. I wanted them to know that when I went to hospital it was because I was working on getting BETTER, that when the doctors gave me my ‘chemo medicine’ it was to help me get back to being their Mammy.

Talking to them helped

Did telling them help? I think it did. My son understood I was sick. He knew I was getting medicine that would make me tired and that I would go bald. He knew it would go on for a while but that he would be looked after and so would his sister. It is hard to avoid the word cancer being used around the house and kids are very astute. My mum often says ‘Little rabbits, big ears’ and this is definitely the case! They might look like they are playing happily but guarantee they take in more than you think. Hence, we wanted to use the word cancer so it was not something to be feared. It became part of our language, as did chemo. When my hair fell out, I showed the kids and my son rubbed my head and told me I was still beautiful. He’s a little charmer!!

Moving on

I continue on hormone treatment and have monthly zoladex injections. There have been times I have had to bring the kids with me for my shots, or they see me taking my meds in the morning and have asked what it’s for. I tell them it is to hopefully stop me getting cancer again. I’m three and a half years out from diagnosis now and would still occasionally have chats with my son in particular about that period in our lives. My daughter doesn’t remember much, but he does. I think being able to talk about it openly helps reassure him, plus if I get sick at all he isn’t concerned that the ‘sick boobie’ is back. This was our approach. It worked for us and I’m glad we chose to use the words cancer, chemo etc. The decision on what to tell your kids can be a tough one, but there is lots of advice and support available online from various cancer charities so don’t be afraid to reach out.

Cancer & pregnancy – Mummy’s Star

Cancer & pregnancy – Mummy’s Star

In this guest blog, Pete Wallroth, founder and CEO of Mummy’s Star talks about why he set up the charity. He also talks about how it can support parents of babies up to the age of 12 months, and those going through pregnancy whilst diagnosed 

Breastfeeding and breast cancer

Breastfeeding and breast cancer

In this guest blog, Kathryn talks about breastfeeding and a cancer diagnosis. One year ago One year ago today (as I write this) I breastfed Grace for the last time.  One year ago today I was told I had cancer.    I remember it so vividly,