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 …
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 protect them from any harm, worry or concern.
The trouble is that children easily pick up on things, and have amazing imaginations. Even if you think you’re hiding your grief, pain, and emotions supremely well – they know something is up. Not telling them, or giving them partial or incorrect information can be more worrying than the truth.
So how to start?
Here are some tips to help start talking:
- Rehearse what you will say out loud in front of a mirror. It can be frightening to say ‘I have cancer’ for the first time.
- Choose a calm space and a quiet time of day – not before your child’s bedtime if possible.
- Don’t use misleading ideas like ‘I have a bug’ or confusing terms like ‘I have the big C’.
- Use the jigsaw approach if you’re not ready to tell them everything. One small piece at a time.
- If you cry, it shows them that it’s OK to show emotions.
- Give your children time to take the information in – silences can show they are processing what you have said.
- Ask if they have any particular worries. It’s perfectly fine to say you don’t know some of the answers.
- It can be helpful to have some resources to hand. Having something to look at and fiddle with can make you feel more in control (recommend the free app ‘Kids Guide To Cancer’)
It doesn’t matter how old your child is, the key aims are to reassure them, show them love and security, and to open a safe space for them to ask questions.
What to tell them?
Well, this will depend on the child’s age and development.
Most young children need to simply hear that cancer is a sickness, that you are trying to get better with the help of the doctors. Don’t be surprised if they want to go and play and react like nothing has happened.
For older children you could say something simple like:
“I have an illness called cancer. It means some lumps are growing inside my body that shouldn’t be there. I have many doctors and nurses who are helping me”. They are likely to ask lots of questions, so perhaps prepare yourself with some answers.
A few things to note.
Children can often believe they have caused the cancer by behaving badly or thinking bad thoughts, and they might think cancer is contagious. So tell them, you can’t catch cancer, and nothing they did, thought or said caused the cancer.
Also, keep in mind that nearly every child will either ask or think the question ‘Are you going to die?’. This is the worst question ever but it needs to be addressed. Try not to brush it off, but instead say something like ‘Nothing is for certain yet’. It shows you are not shutting them down and makes them feel more secure.
Teenagers like the truth delivered in a non-patronising way. Often sitting next to them to talk rather than opposite them works better. It’s all about giving them space, and not being too confrontational and staring into their eyes.
Look for any changes in your child’s behaviour as this might be a clue to how they are feeling.
For example, they may return to younger behaviours such as thumb sucking or wetting the bed, or suddenly become afraid of something they were not previously before. Some children display more anger, some complain of headaches/stomach aches and some children will have no reaction which can be hurtful but it’s their way of processing it. All these responses are normal.
How to support them?
What can you do to make this easier, especially when your life is upside down too? Basically all the support revolves around giving them security with boundaries, facilitating good communication, and showing them love. Ask for help from family, friends, and your child’s school.
- Tell them of any changes in their routine. Use calendars and daily time tables so they are not surprised by sudden changes, and feel in control of their lives.
- Help them identify their feelings, e.g. by reading stories or drawing them out.
- Include them in the family decisions, and give them small appropriate tasks, e.g. make them chief toilet roll changer.
- Create a worry box. Take any box and tell your child they can either draw or write their worries on paper and park them in the box. You can come to an agreement where you both look at the worries at the end of the day or week, or get their consent to simply have a look from time to time.
- Encourage them to fun & organise special time together – e.g. picnic on the bedroom floor or a film – small things not Chessington World of Adventures.
- Keep communicating – try different methods to see what works for your family, e.g. Post it notes around the house; Weekly family discussions around the table; Going to favourite café to talk once a week; Whatsapp messaging; Talking in the car.
Final four lessons…
Finally, it often helps parents with their fears when I share these four lessons I learnt from my experience of teaching over 1000 primary school children about cancer.
1) Children are genuinely curious about cancer – even those who are recently affected. They have the capacity to understand if explanations are age appropriate.
2) Children have an amazing ability to deal with the truth that adults often underestimate, and this is largely because they don’t have the same fears as adults.
3) Children enjoy the opportunity to speak about cancer – especially those affected.
4) Every child has some degree of awareness of cancer whether it is news from the media, public health or charity campaigns, or shops on the high street. Most of what they believe is incorrect.
For resources to help with these difficult conversations, go to www.fruitflycollective.com
Caroline Leek is the founder and director of Fruit Fly Collective, a multi award winning not for profit organisation that focuses on improving the public’s understanding of cancer as well as supporting individuals and their families affected by cancer.
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.
In this guest blog, Bronwyn talks about being diagnosed with breast cancer with a three month old baby. So where do I start, the having a baby part or the getting diagnosed with breast cancer part. Let’s be honest, the two do not make the …
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 …
This is another brilliant blog in the series from Confidence Coach, Allie Morgan (links to previous blogs are at the foot of this post). Allie is a Confidence Coach, working with cancer survivors and those with chronic illnesses. After overcoming bone cancer at the age …
This week I’m introducing you to the amazing Leanne Pero, founder of Black Women Rising. I met Leanne in 2019 and we’ve since become friends. It’s safe to say that she’s one of the nicest people you’ll come across in this community.
Leanne was diagnosed with breast cancer in 2016 and has subsequently spent a large proportion of her time involved in breast cancer awareness campaigns and helping others who are going through breast cancer. You’ll probably have come across Leanne via one of her brilliant cancer projects – whether Black Women Rising (including the brilliant magazine), the Positive Day Planner, – or one of her interviews. Leanne was deservedly nominated and subsequently in the final of the Lorraine Woman of the Year for 2019 and she has won a number of awards for both her breast cancer work and other community/dance work. I want you to get to know the person behind these accolades and understand what is was that led her to focus a lot of her time in helping others facing breast cancer…
Can you start by telling us a bit about your diagnosis?
After finding a lump in my right breast, I was diagnosed with Stage 3 Breast Cancer, aged 30 in October 2016, just 6 months after my mum was diagnosed with breast cancer for the second time. I underwent 8 gruelling rounds of chemotherapy, a bilateral mastectomy and immediate reconstructive surgery.
You were young when you were diagnosed with breast cancer, how did the diagnosis impact your life at that young age?
I had convinced myself it was nothing so when I heard the words “I am not going to beat around the bush, we’ve found cancer” I went into a state of panic and anxiety. I couldn’t shake the sense of shame around my diagnosis so only very close family and friends knew but no matter how many wonderful people you have around you, cancer is a lonely journey.
You were running your own business when diagnosed, how did you juggle everything during your treatment? Were you able to carry on working during treatment, or did you take some time off work?
At the time of my diagnosis I was fit and healthy, I was a successful business owner and I had a dream job at the world-renowned Pineapple dance studios. I was also at university finally getting my business management degree. Due to the intense nature of my treatment and subsequent surgery I was not able to carry on working. I had a few days to hand over the business, defer uni and cancel all commitments.
Being diagnosed with breast cancer as a young black woman had a huge impact on your life – can you tell us a bit about this.
A week after my diagnosis, during an appointment with my oncologist, I was told that many people within the BAME community refuse the drugs. She told me “I know you will beat this, and I am going to need you to go out and educate everyone that chemo is not that bad so that they stop refusing the drugs”. Whilst I appreciated her vote of confidence, at the time I forgot her plea. Little did I know that the future would see me setting up a charity to help others in the same situation as me.
Lots of people find that cancer impacts their mental health. You’ve been vocal about the impact of cancer on your mental health – can you tell us a little bit about how it affected you and what you did to deal with this?
I definitely struggled with my mental health both during treatment and after it. Everything in your life changes in an instant. Your body changes. You lose so much both physically and mentally.
I began to see a therapist which has helped me immensely. In addition to that I starting a gratitude journal. I found this incredibly useful. Even on the days I had chemo, I made sure to write down things I was grateful for. It was such an important tool for me that last year I launched a new company called The Positive Day Planner and created 21-day gratitude planners. You can see more about them here.
I’ve been following your fantastic Black Women Rising campaign since it’s launch. Can you tell us a bit about the campaign?
Black Women Rising started as monthly peer to peer support groups – these are the heart of the project. From there we ran pamper events for women of colour. The next big step was the UK first’s all-Black cancer portrait exhibition which launched at The Oxo Tower and then toured London. In 2020 we launched our weekly podcast as well as publishing our inaugural magazine.
What led you to set up Black Women Rising?
In my quest to find the right services to help me, I realised that the NHS lacked cancer support packages for Black and BAME cancer patients. From there I saw that stories from my community were being excluded from the UK’s mainstream media outlets, magazines and perhaps most importantly – from reputable annual cancer campaigns by brands and charities failing miserably at diversifying their campaigns. All this did was further fuel the false narrative that cancer is “not a black disease”.
I began meeting women and men who were either mis-diagnosed, not offered mental health support and generally left feeling excluded from communication with their consultants which echoed the man other health inequalities in the BAME community.
You’ve been very active in the cancer community raising awareness of breast cancer issues over and above your Black Women Rising campaign, what sorts of things have you been involved in?
I am always ready to get involved with other charity campaigns as well as those of major brands. Some of these include Pretty Little Thing, Stella McCartney, Estee Lauder, GHD, Zalando, Breast Cancer Now, CoppaFeel!, Future Dreams.
What would you say are the key messages that you’d like to pass onto young women (or any race, nationality, sexuality) who are diagnosed with cancer?
My biggest message is to take every day as it comes.
And the other is to seek external support. Find organisations like ours where you can meet likeminded women to help you through everything.
What’s next? What plans do you have going forward and what should we look out for?
We have big and exciting plans for 2021 – some of which we cannot share with you quite yet (sorry!) and some of these are going to have to be adapted to make them Covid friendly. We have plans to increase our support groups, launch series 2 of our podcasts and work has already begun on our 2021/2022 magazine.
To find out more about Leanne and Black Women Rising, you can follow them on:
Twitter: Leanne Pero
Facebook: Leanne Pero
And you can order a free copy of the magazine here.