Living with incurable cancer: talking to my children

In this guest blog post, Shine community member Beth writes about her story of living with incurable bowel cancer, and shares her experiences of talking about her illness with her young children.


 

ME.jpg

Meet Beth

My name is Beth, and I was diagnosed with bowel cancer in 2016 at the age of 37. I was working as a Paralegal, and about to start the final year of my law degree. This diagnosis could not have come at a worse time, just when I was finally pursuing the career of my dreams and becoming a solicitor. However, it was not my career that came to mind, but my family: my husband and my babies.

In 2017 things went from bad to worse. I was told that the cancer had spread to my lungs and was now incurable. I was given six months to three years to live. My son Joseph was nine at the time, and my daughter Abigail was just seven. How was I going to tell them? What was I going to tell them? How much should I tell them? How much would they understand? How could I make sure I was always a part of their lives? What could I put in place for them emotionally for when I was gone?

I had a lot of questions – mostly about my kids, not medical questions for the doctors. Who to ask? I found charity leaflets about talking to children about cancer, but they were very generic; I felt that there was a lack of support for parents and children in this situation. I wanted to speak to child psychologists, parents who had been through this, adults who had lost a parent as a child – anyone who could give me insight into the best things to do for my children. in the end I found help, ideas and support from my followers on my Facebook page. I asked if anyone had lost a parent at a young age and if so, what had helped them. Then the ideas came flooding in.

When I was first told I had cancer, we told the kids that I had some bad cells and the doctors were going to take them out, meaning that I would be in hospital for a bit. After my initial operation, we explained that I would need to have some medicine to kill off any tiny bad cells that the doctors could not see and help prevent any more bad cells growing. We explained that the medicine might make me feel ill. The progression of my cancer meant that I needed to break the news that the bad cells were back, the doctors could not cure me and – the bit I still needed to get my head around – I was going to die (but we had no idea when).

di3 004

Beth and her family

I talked to Richard, my husband. We planned to sit the children down and talk as a family, but not about time frames. Unfortunately, we never did get to sit down and do this. Life has a funny way of taking these things out of your hands.

I did tell Joseph and Abigail, but it was one afternoon when I was snuggled up on the sofa watching TV with them. An advert about cancer came on and Joseph turned to me and said ‘you had cancer didn’t you, Mummy? But you don’t have it anymore.’ My heart sank. We had never used the ‘cancer’ word, but he knew. Yet that was not what got me. Yes, I was going to have to shatter their world, and it would have to be now because I could not lie to them. The conversation went something like this:

 

Me: Well, you know that medicine to try and stop it coming back?

J&A in unison: Yes, Mummy.

Me: It looks like the medicine didn’t work as well as we thought, and I do still have cancer.

A: But Mummy, cancer can kill people.

J: But the doctors will make Mummy better, Abi.

Me: Unfortunately, the doctors can’t cure me, but they are going to do whatever they can to keep me here with you for as long as possible.

A: Are you going to die, Mummy?

Me: We all die one day, but I will probably die sooner than we would like. You know that if there is anything you want to ask me, you can. We can talk about anything.

There were lots of tears and cuddles, but oddly no questions – well, not then. A few weeks later my daughter, who is very matter-of-fact, asked ‘Mummy, will you last until Christmas?’. I am still not sure if she was more concerned about her presents – the man in a red suit does not get all the credit in our house…!

Both children made us promise that we would tell them whenever we got any new information. Joseph wanted to know about scan results and treatments. They seemed reassured by being included in what was going on. Just over a year on, we still have no idea how long I have left, but we take each day as it comes, and do everything we can to make as many memories together as possible.

We talked about making memory boxes, something they would have to keep their memories of me and our lives together as fresh as possible. The children put things into their boxes that remind them of something we have done together. It could be a photo of us together, anything that means something to them. I hope these boxes will help them to connect to me through physical things they can hold, touch, see, and smell.

15x20_normal_1___0

Dreaming about holidays

I am also doing things that the children do not know about: for example, I have written their birthday cards all the way up to the age of 21. This was tough and I cried a lot, but it was important to me. I set up an email address for each of them and I send them emails. I include a summary of something we have done together, what I enjoyed most, and a picture or two. I bought some books that ask questions about my life, and about their lives. I am in the process of completing these books and trying to answer all the questions.

I plan on recording videos and writing letters for special occasions. My husband can give them if he feels appropriate. The most important thing, though, is to be there for them right now and make the most of the time we do have together.

I am currently on a holiday booking spree…

 

You can learn more about Beth and get in touch with her via her blog, Facebook page, or Instagram/Twitter: @bowelwarrior. 

If you would like more support about talking to children about cancer, you can…