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. …
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
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.
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.
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 …
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 with cancer.
Cancer was an alien world to me nine years ago. Something I knew happened but which had never touched my immediate family very directly.
That was until my wife Mair was diagnosed with breast bancer when midway through her second pregnancy in June 2012. She underwent chemotherapy, gave birth to our healthy baby boy and the tumour was responding well to the treatment. Sadly though, it spread to the lining of her brain and she passed away very quickly shortly before Christmas that same year. Merlin was only 10 weeks old and my daughter Martha just 3 years old.
Setting up Mummy’s Star
The circumstances of her diagnosis in pregnancy and the lack of support tailored to this situation led to the charity Mummy’s Star being established in her memory in 2013. It was set up by my family, Mair’s friends and also members of the medical teams that had looked after her. Our aim is to provide Cancer Support In & Around: Pregnancy, Birth, Loss and Beyond.
Since launching we have grown quickly, supporting over 1,000 families around the UK and Ireland who are diagnosed with cancer either during pregnancy or within 12 months of a new birth and raising awareness of the fact that this does happen to women. We also receive regular referrals from existing large, long established cancer charities and hospitals nationwide one of which is The Christie, where Mair was treated.
Referrals from a range of different organisations and more importantly people who have direct experience of cancer tell us something important as a charity. It shows us the importance that is being placed on our service by other professionals who have been working in the cancer sector for many years, a recognition that we have created something that was not there previously for those women who are diagnosed at a time when they should be celebrating a pregnancy or new birth, but which is cruelly interrupted by a cancer diagnosis.
Cancer can be a scary time for anyone whether it is your first, second, third or fourth child or whether you have lost or had to end a pregnancy as a result. A cancer diagnosis only seeks to heighten that feeling of fear 100-fold.
How we can help
At Mummy’s Star we have a unique opportunity when women first get in contact with us and that is to bring the focus back onto their pregnancy or enjoyment of their post natal period, rather than everything being dominated by their diagnosis. When we greet or introduce ourselves to new mums contacting us, it is quite shocking to hear from mums that we are sometimes the first people to have said “congratulations” to them about their pregnancy/baby, or the first to recognise and acknowledge their loss if they have experienced one. Cancer should not be the domineering factor in a maternity setting positive or negative.
In another aspect, there is no hiding from the interruption that cancer does bring in this setting. It does create changes, make adjustments in how women birth and where, but one of the biggest factors can be the interruption of the sought after bonding time for mum and baby, and indeed her partner. We routinely hear from women of their guilt, or that they aren’t being a good mother in the way they’d hoped. No one should feel like this, no matter what the pressure, but least of all when that fatigue, that worry, that anxiety is caused by something such as cancer and the fear it can bring as to whether they will see their children grow up or not, depending on their treatment outcomes. Far from not being good mothers, these women are extraordinary mothers and would be mothers.
Telling other children in the family
That is only half of the story though as many already have a family at the point of diagnosis. It can be very distressing and difficult to tell existing/older children if you have them about a cancer diagnosis. However, it is each individual families choice if they tell their children about the diagnosis and treatment or not. What we have learned as a team over the last 8 years, and what we continue to learn about is that when and where you tell children can be as important as what you tell them.
When families do ask us, we always advise, in ley terms, to be sure that you have time to tell them, allow for questions and then make sure they have understood what you have said. It is important they know who they can talk to about anything you tell them e.g., you/grandparents/ teachers/friends.
It may also be helpful to inform their nursery or school if appropriate in case they notice any behavioural or mood changes and thus know what this may be related to so they can adjust the support they offer your child.
Our focus is the whole family
In our situations, the focus is understandably on the woman primarily, but we must never lose sight of the fact that cancer has a whole family impact. Therefore, between us all, we should work together to provide whole family support.
For more information visit www.mummysstar.org
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 story of a cancer diagnosis and treatment during pregnancy.
I found my lump a week or two before I knew I was pregnant. It was a hard pea size lump just under my skin. I told myself I would keep an eye on it for a week or two and then go to the doctor.
However, much to my surprise a week or two later I found out I was pregnant and I put the lump down to that. I went to the doctor to have my pregnancy confirmed and mentioned the lump briefly while we were chatting but didn’t ask the doctor to look at it.
A few weeks passed and as the pregnancy progressed my breasts started to show the signs of pregnancy. However the breast which had the lump was noticeably more sensitive and while my “normal” breast had started to show other changes besides size, the breast with the lump did not. I went back to my doctor and she referred me to the breast clinic at my local hospital.
At my hospital appointment I had an examination, an ultrasound and a biopsy was also taken. When the results came back it was confirmed it was breast cancer. I would require a mastectomy due to the location of the tumour and the fact that I could not receive radiotherapy during pregnancy.
As devastating as this news was, I felt so relieved to hear that they could safely treat myself and the baby. I was almost 11 weeks at this stage and although I had already had an early scan at 9 weeks it was still an uncertain time in the pregnancy.
I had my mastectomy at 13 weeks but due to COVID restrictions I couldn’t have any visitors and my partner could not come to the waiting area of the hospital with me so I was alone that morning and for the 3 nights I spent in hospital. I was still having some of the last of my morning sickness but thankfully the day of the operation I wasn’t as sick as normal so I didn’t find the fasting as bad as I’d expected.
All the nurses and doctors were so kind to me in the hospital. The operation went well, I didn’t really have any pain afterwards and I made a good recovery with the exercises the physio gave me.
A number of weeks later I went to meet my oncologist for the first time, where he laid out the plan for chemo. Thankfully, the type of chemo normally indicated for my type of breast cancer is safe to use during pregnancy after the first trimester.
I started chemo at 19 weeks. I was much more nervous for the baby than before my mastectomy even though I had been told the chemo was safe, especially as I had to attend chemo alone, again due to COVID restrictions. Thankfully he was just starting to move by then which helped to put my mind at ease. Feeling the baby move, especially in the few days after each treatment gave me so much comfort and I felt so connected to him at those times. We also found out we were having a boy a few weeks after I started chemo which made it much more real for us.
I was also very fortunate that the maternity and general hospital are co located where I live and my oncologist and obstetrician had worked together several times before. I had regular scans every 2 to 3 weeks following my diagnosis and everything was normal so this also really helped to put my mind at ease, particularly in the early stages.
I found chemo tough like everyone else but I managed to finish it. I rested a lot and did my best to eat healthily, which was easy enough at first. I had a lot of nausea early in my pregnancy and hadn’t been able to eat much up to about 16 weeks so I was really motivated to eat well for as much of the treatment as I could. As it turned out the nausea I had from morning sickness was much worse than anything I got from chemo but as my taste buds changed due to the chemo I found it hard to find foods I could stomach.
I got very tired as the treatment went on and had anaemia from both the chemo and pregnancy. Towards the end I used to have to lie down for a few minutes after climbing the stairs! I had a blood transfusion for the anaemia towards the end of my treatment which helped a bit. I also had a lot of congestion in my chest from the baby pushing on the bottom of my lungs so I had to sleep propped up toward the end of treatment.
My baby boy was born shortly after I finished chemo. He was perfectly healthy but as he was a bit early he had to spend some time in the neonatal unit. He was so well looked after in there but as there were visitor restrictions my partner and I could not be there at the same time so we couldn’t be together as a family in his early days. This was tough but the staff there were such a good support to us, especially to me, constantly advising me to get some rest and not put myself under pressure to be there all the time, and when our baby came home he was feeding really well and in an excellent routine which also really helped my recovery.
It has been hard recovering from cancer treatment as a new mum with a small baby, especially as my partner’s family live abroad and my own family live outside our own COVID lockdown area so we don’t see them much. I had to start hormone therapy recently and at the beginning the fatigue and other side effects made getting up at night especially tough but my partner has been so supportive and has been doing most of the night feeds and it has gotten easier.
Our baby is 4 months old now. He is healthy and has started to smile and make noises and has even laughed once or twice. We are just over the moon with him and we feel so fortunate that we are all doing well.
When I look back at my pregnancy there were some really heartbreaking times around my diagnosis and during chemotherapy. There were times when I was both emotionally and physically drained and was full of fear and anxiety about the future but my baby really gave me the strength to keep going and stay positive in a way I’m not sure I could have if I hadn’t been pregnant. I had great support from my family and friends my local cancer support centre, and from a charity called Mummy’s Star who support women who are diagnosed with cancer during or shortly after pregnancy.
Both of these resources really helped me to work through my feelings and my fears and to realise that I could get through the treatment. When I was resting and could feel my baby moving it really kept me going, and I actually have some very happy memories when I tried to just be present and enjoy the pregnancy in these moments.
Women don’t stop being women when they are diagnosed with cancer by Jennifer Young, Founder of Beauty Despite Cancer Coming from a scientific background, Jennifer Young is an experienced microbiologist and associate member of the Royal Society of Medicine, who decided to combine her knowledge …