How do you talk to the kids about it?
I get this question a lot. Like a lot. Everyone has an opinion on how much to share or not share with the kids. I think how I have approached it over the past two years has varied slightly (veering into the done well and the done badly) but what has been a constant, is that I have done my best to be honest with them about it.
My key thoughts
- With honesty.
- Kids make up their own narrative in the absence of information.
- Giving space for all topics
My kids are now 10 and 8 years old. It has been two years since my diagnosis and I feel that the ground constantly shifts; whether it is the kids growing up, my own ability to manage the situation, their own processing of what is going on or simply that it’s a Monday or it’s raining. I have had many a day where I have been overwhelmed with the knowledge that I’m not handling it well with the kids. Then I have the moments – like one today – where I almost think I warrant a pat on the back for how I’m managing it (and then I jump online to blog about it…).
The First Days
I made quite the big mistake of thinking my children were asleep and telling someone in the house that I had breast cancer. My eight year old daughter was awake. So, yes, I started on the wrong foot.
I had every intention of telling the kids; it was only a few days after my first mammogram and while I had confirmed that it was breast cancer, I had no idea what stage or what would happen. I also naively (not entirely on my own though, also confirmed from my doctor) thought it would be a “rough year ahead” – chemo, surgery but I’d get through this.
I somehow got through the conversation with my daughter and the next morning, sat in bed with both kids and told them it would be a difficult year but that at end, we’d go on a holiday to celebrate me being cancer free because I would get through this.
The next day, I got my PET scan results back and learnt that it was stage IV and was life-limiting (five to ten years). It changed everything and I no longer knew the best way forward. How did I tell an eight year old and a six year old that I was not going to get through it?
To Tell or Not to Tell
I spoke to different people about what I should tell the kids. There were some firmly in the “do not tell them” and others, who thought I should tell them everything. When my husband left (about a year earlier); he didn’t want to tell the kids that we were separating straight away. He wanted to leave – with a vague idea that he was going home to find work and let them used to the idea of him not being around. I wanted to tell them but didn’t want to push the point; I agreed to his way but told him that I would not lie to them if they asked. I remember a wiser person than I (my brother – but don’t tell him I said that), telling me that in the absence of information, the kids would create their own narrative and it was better to tell them. He was right and delaying telling the kids about the separation was a mistake, I didn’t want to make the same mistake again.
After a week of different scans and tests, we had a clearer understanding of my situation. I had surgery scheduled for the next week to take out my ovaries and with the plan to start treatment as soon as I had recovered. I knew I had to tell them. I will never forget that moment. We were sitting in a spa in Petra and I told them that they had found cancer in my bones. I told them that this meant I could not get rid of the cancer and that it meant I would probably die from the cancer in the future. I did not and I still have not ever given them a timeline; I did not say that I might only have five to ten years to live – because that is something that we don’t know for sure. I told them the treatment plan. I stuck to facts about what I knew and didn’t hesitate to say “I don’t know” when I did not know the answer. They asked some great questions. Why can’t they just take the cancer out of your bones, like they were going to do from your breast?, How will we know if the medication is working? and If you if you die when you are 82, will it be from cancer or old age? They then repeated that questions four or five times with progressively younger ages, until they said 42. At 42, I said I would not die at 42. It was a tough conversation.
The next night, my daughter was inconsolable as she was trying to sleep. She had many more questions but also one promise she asked of me, to always tell her the truth about the scans – if it was getting bigger or smaller – she wanted to know the truth. It was at that moment that I knew I had done the right thing in telling the kids what was happening. As hard as it was – and wow, did it just get harder over the next months (or year) – I often come back to that moment of my eight year old making me promise to always be honest with her about what was going on. I don’t deny that it has been a lot for them to have to process and, two year on, I’m not 100% sure they have really been able to process it all – can anyone?
The difficult conversations
I’d say that the first year of my diagnosis, the conversations were almost always difficult. They never came at time when we were nicely talking – they always appeared when one of the kids was tired or upset about something else – there was a lot of yelling, anger directed towards me for being selfish (a word I always reacted really well to). The kids were angry, they were scared and they blamed me. I wish I could say I handled this well; I definitely didn’t – I was angry, scared and also blamed myself.
During these conversations, I do remember talking to my daughter about the need for us to not get weighed down in the grief of the fact that my life might not be as long as we want. Because if we get too caught on that, we’ll lose the opportunity to enjoy the time we do have together. I didn’t say to ignore the grief – a very valid feeling – but that we need to find a way to get out of the grief and find the joy in life. If we cannot find the joy and we are not taking the small moments to live and be happy, it is counter to the point of being sad that I don’t get to live.
What was probably more useful, I did get the kids to see a psychologist – not often, as they were reluctant – but they started seeing my psychologist every so often. I think the space this created for them to talk about me having cancer with someone else probably paved they way forward for us to have more conversations together. Then we began having some calmer conversations about me having cancer – even some jokes. We got into a routine and me living with cancer was just a part of that routine.
However, everyone so often it continues to pop up. Like yesterday, I told the kids I had to go to the hospital for some routine checks. A few hours later, my daughter ran from the bedroom in tears because she had a dream that I died. She asked me if she could come to the hospital with me and I said no and put her back to bed. I then thought about the point of “children make up their own narrative in the absence of information”. They don’t know what “routine” means. So I changed plans and took them along to the hospital with me today.
Giving the space
Almost immediately after I told the kids that they could come to the hospital with me, it was like we opened a door to talking about me having cancer and what this means. It was super natural and we had some of the most amazing conversations in a really calm and fun way. In one conversation, my son told me that he never imagined me being old and we talked about why, including that it could be because we know I have cancer. In another conversation, the children asked me if I’d have a funeral – they then had great fun planning the invite to my burning (yes, I want to be cremated and that was my only real condition), which will include lots of colour. The kids also followed me around the hospital and saw what my “routine” was and that it wasn’t scary. We had a really great morning together – despite the surroundings and the context. And I sit back this afternoon and am so damn proud of them (and myself – just for today) – how they are growing and learning to live with this – including continuing to find the joy.