Today’s article is from Cora Dineen Mattimoe, a mum and breast cancer survivor from Co. Cork. Cora’s written a piece for us all about how to tell your kids you have cancer. If this is a scenario facing you in the coming weeks or months, we hope you’ll find Cora’s story helpful.
I am a breast cancer survivor and after coming out the other side, I felt I wanted to give something back, what that was I didn’t really know. After much thought, I decided to write an article on “How to tell your children you have cancer”, based on my own experience of when I had to tell my children. People who find themselves in a similar situation to mine, may be able to take something away from my journey, which may help them as they begin theirs.
Being told you have cancer throws you into a world that you never thought you would have to be in. The life that you and your family have known up to now is gone and it will never be the same. The emotional rollercoaster cancer journey has begun and it’s a long and rough ride for all.
After the initial diagnosis shock sinks in and you are faced with your own mortality, you suddenly realise “how am I going to tell my kids”. I found myself in that situation in July 2016. I went for a routine mammogram, had no lumps or bumps and was diagnosed with DCIS breast cancer, which is pre-cancer stage. In my case I required a mastectomy and I was told that I may need chemotherapy or radiation therapy down the road. I sat there in front of my consultant, thinking he’s got it wrong and must be talking to someone else, even though there was no one else in the room except the nurse. After being in the hospital for five hours that day, having lots of biopsies, I drove home in a daze. A week later, the biopsy results confirmed that I had cancer. The next step was to see if it had spread. I have two girls, Sophie, 11 at the time and Sarah was 9, how was I going to tell them what was going on when I couldn’t get my head around it myself. The thing is I didn’t at first. My advice to anyone having to break this awful news to children is take a breath yourself first. Take time for yourself to get over the shock and in doing that you will be stronger for them, even though deep inside you are falling apart. They feed off your emotions so telling them before you have time to digest everything and get more facts and information from the doctors, I believe will make it harder for them and you.
Four weeks after diagnosis, we had a family wedding; my girls were so looking forward to it as was the rest of the family. My husband and I made the decision not to tell anyone that I had been diagnosed until after the wedding. Looking back it was the best thing we did but hard at the same time. Those four weeks gave me a chance to think through how I was going to tell the girls. Even though we had decided we wanted to tell them what was going we still wondered if we were doing the right thing and maybe we would upset them too much. We met with the surgeon over the next few days and got his view from the medical side of things. He told me to be honest with them and not say Mum is just sick. Sick to them implies a cold or tummy bug. If you are not honest and they find out from another child in the school yard or playground, then you open up a bigger issue for them. Now they start thinking that you have lied to them and what else is she not telling us, this will make them even more insecure.
I did some internet research on how people had approached the subject in the past, what facilities or support groups were out there to help children come to terms with a cancer diagnosis. The hospital had given me a small booklet called “Mummy’s Lump” which goes through in picture format, the story of a family where Mum is diagnosed with breast cancer and the journey she has to take. Initially looking through the booklet, I thought this is way too basic for my 11 year old and this won’t help, but I was wrong. Kids are all about visualization and it wasn’t the few words that were on the page that helped, it was the pictures – the Mum in hospital being cared for by the nurse, the Mum with the bald head but still putting on her makeup, the Grandparents and other family members helping them with school work and doing fun things when Mum wasn’t able and the passing of the seasons showing them that the cancer journey is a long process. I would highly recommend it and Sophie told me afterwards that it really helped her in understanding the journey we were about to take.
A few days after the wedding was the day we decided we were going to tell them as I was going into hospital to have nodes removed. My husband took the morning off work so we could tell them together. At this stage, I didn’t know if the cancer had spread, if I was going to die because of it and nothing was certain. I could only go on what the surgeon had said. Anyone who hears the words from someone “I have cancer” is thrown into an emotional orbit and assumes the worst, that you are going to die. We sat them down and I began to explain what the doctors had found. I brought the explanation down to their level so they could understand what was going on and we went through the “Mummy’s Lump” booklet.
I told them straight out that I had breast cancer. Sarah began to cry and ran out of the room. Sophie asked lots of questions about the surgery, medical and emotional type questions, which I answered as truthfully as I could without scaring her. Sarah came back and asked me “Mummy are you going to die”. I had to be truthful and told her that I wasn’t planning on going anywhere and that the doctors and nurses were going to do everything that they could to help me. Even though over the next few days and weeks, we would ask her how her mind was, was she feeling ok, did she want to ask questions the answer was “No, I’m fine”. This was a sign to us to keep an eye on things going forward.
At this point, we told their teachers as well about my diagnosis and what was going to be coming along in the weeks and possibly months ahead. Children deal with cancer news in different ways and sometimes it can affect their homework, they can become withdrawn or can act up. The teachers were great on keeping an eye on them every day and agreed to let us know if there were any upsets or behavioural changes. We also talked to them about telling their friends. From our point of view, it was perfectly fine if they wanted to do that to help them through. They were both adamant at the start that they did not want anyone knowing what was going on and we told them that was ok. However over the months, little by little, they told a few close friends. One of Sarah’s friends understood very well what she was going through as her mum was going through the same thing but two months ahead of me. It was great for them to be able to confide in friends how they were feeling and what was going on.
The day for the surgery came, we said our goodbyes as they went to school and I went to the hospital. We reassured them that I would be fine and promised that they could visit the day after my surgery which they did. One day, Sarah asked me could she see the drains coming out from my wounds. I asked her if she was sure and she said yes, it was her way of getting involved. So at home she helped me empty my drains, not physically due to infection risk but she noted the fluid volume for the daily hospital phone call. To make it fun for her, both she and I gave the drains names – Christian and Arthur. So she would often ask “How are Christian and Arthur doing?” It was her way of dealing with what was going on and it worked for her. Sophie decided she would leave us to it, and that was her way of dealing with it!
The recovery continued with lots of trips to the hospital due to having a total of five seromas, I was one of the unlucky ones. It was important for the girls to come with me to the hospital when they could. I explained to them why I was going there and they accepted that this was part of the recovery journey. Hospital wasn’t a scary place as this was where the doctors were helping Mum get better. The more we visited the more they became comfortable with the place. Plus Granda was always on hand to bring them to the hospital cafeteria for ice cream!
The next bombshell fell on us in October when I was told that I was going to need chemotherapy, now I was going to lose my hair, how were the girls going to react to that. I was told 10 days after my first day of chemotherapy, my hair would begin to fall out, it was inevitable and sure enough, the timeline was spot on. However, I made the decision that I was going to get my head shaved before it started falling out in clumps. The last thing I wanted for them and for myself was to start seeing that happen. So I arranged an appointment with the wig people, who shaved my head and helped me adjust to life wearing a wig. Afterwards, I went to collect the girls from school with the wig on. They didn’t even notice, they thought I had just gone to the hairdressers that morning. Relief, if they passed it, then it must look natural.
The chemotherapy was tough but you are on the rollercoaster and you have to get through it. I explained to them what was going to happen. There would be days that I wouldn’t be able to wave them off to school but instead they used to come to the bedroom to say goodbye. They accepted that I would be tired l, wouldn’t be able to do a lot of the activities with them or fun stuff, but this was only a temporary thing. The big thing for them was that they did not want to see me walking around the house with no hair, especially my eldest. She felt I wouldn’t be her Mum if she saw me like that. I respected that and made sure I always had the wig on or wore a hat/scarf. I felt in time that this would change but it didn’t for a long time. Even when all the chemo was over and my hair began to grow, she still didn’t want to see it. So we continued on until one day I showed her a picture of a woman with a very tight haircut and said that’s what it looks like underneath my wig. She agreed to look, was very apprehensive but was delighted when she saw it. So from my experience, I would recommend to go with what they want and ask them what is comfortable for them. You have to remember that they have been thrown into this journey too and their world has shattered around them. I never went out without my wig which was purely my personal choice. I had read that some people had encountered in the past, people coming up to them when they were out with their kids and were asked “how long have you left”. Not sure how I would react to that one. We had enough going on, without encountering that scenario.
The hospital I was attending had a very good website and videos of the Breast Unit and the Oncology Dept. I went through the videos first before I showed them to the girls. They could see my doctors and the special care nurses talking about the treatments. Now they had faces to the names which again are back to visualisation. They were able to see the chemotherapy ward, where I was possibly going to sit. Now it wasn’t so scary as they knew when I said I was going for chemo, they knew exactly where I was going to be. It helped settle their anxiety and uneasiness.
When I was almost finished my chemotherapy, Sarah began to suffer from anxiety attacks, which was a delayed reaction to everything that was going on with me. She feared that if she left my side, I was going to die and she would not see me again. Over the next few months, by reassuring her that I was ok, that I was being honest with her on everything and by keeping her days in a routine with activities etc, she came out the other side. She will talk more about it now than before. I don’t constantly bring up my diagnosis with her but the odd time she will mention something about it, we talk it through.
They had to grow up quickly when they were given my diagnosis and all that went with it. It has made them stronger and closer as they were there for each other on the bad days. It has made them more empathetic and sensitive to other people’s needs and they have become the confidante for friends as their loved one goes through the cancer journey. We don’t sweat the little things anymore and we enjoy every day that comes along together.