At RedForRuth Day in June 2023
Simona shared her experiences as a parent living with incurable cancer and finding support from the Ruth Strauss Foundation. Simona died in January 2024. This is her story.
When Simona fell ill with Covid during national lockdown in 2020, she didn’t think too much of it. Her husband, Will, was also struck down with the virus so they battened down the hatches at home with their children and waited for it to pass. But over the course of the year, Simona wasn’t getting any better. “I was really breathless all the time and I started losing a lot of weight,” she said. “Then towards Christmas of 2020, my boss said to me ‘You’re not getting any better. Take some time and figure out what’s going on’. I was signed off work and in February of 2021, I started vomiting every day. My GP sent me for a CT scan.” This was at the height of Covid, when family members were not allowed to accompany patients in hospital.
Simona suspected something serious was wrong when she was advised to bring someone with her to the appointment…
Sadly, her suspicions were right and following the scan, in March 2021 she was diagnosed with incurable stage four bowel cancer.
From there, plans for chemotherapy treatment were put in place very quickly. Simona and Will’s thoughts turned immediately to their daughters, Sophie and Flo, who were 10 and 7 at the time.
HAVING CONVERSATIONS ABOUT DIAGNOSIS
“I remember sitting with the consultant and the first thing you think is, ‘How will we tell the kids?’. We knew there was no way we could hide it from them because it was so overwhelming,” Simona recalled.
“It was important that we had difficult conversations early on. When we met with someone at the Ruth Strauss Foundation, we talked a lot about how we relay information to the girls and not make it scary for them, but make sure they understand that this isn’t going to go away.”
The counsellor helped Simona and Will break down what to say and how to approach things. They were able to call on the counsellor’s expertise and some of the Foundation’s resources to really tailor the information they revealed to their children’s different ages and needs.
“That was really helpful, because there are three years between the kids and our eldest understands a little bit more and asks more questions,” Simona commented. “But our younger one just can’t process it. For her, if you’re sick, you get medicine and then you feel better and then you stop the medicine.
“They know what’s going on. They understand I have cancer, that I can’t be operated on at the moment, and that I normally have chemo on a Wednesday. But they don’t quite yet have the full picture because I think it would be too much for them.”
Simona had aggressive chemotherapy for almost a year and responded well. She then began a once-weekly regime of maintenance chemotherapy – a milder form of treatment aimed at maintaining a good quality of life for as long as possible. It allowed her to go back to work and for the family to have some semblance of normality.
“While I’m feeling well, I want to do things. At this point, it’s just about juggling everything – but then I’m also very conscious that at some point, things will change and we don’t know when.”
”While I’m feeling well, I want to do things. At this point, it’s just about juggling everything – but then I’m also very conscious that at some point, things will change and we don’t know when.
SimonaMother of Sophie & Flo
“My initial feelings were ‘When do we tell them, how do we tell them, and what do we tell them?’ It took Matt some persuading to tell the kids. He was quite taken aback by using the word ‘cancer’.”
Sam did some research and came across several organisations that help children through bereavement.
But, as Sam explains, they tend to offer support after a death and not leading up to it. There was very little information about how to talk to children about death and dying.
“The advice I was given was ‘You know your children and what will work for them’, but actually, I really didn’t know what would work for them,” Sam comments.
HOW THE RUTH STRAUSS FOUNDATION HELPED US
The Ruth Strauss Foundation was there to support the family as they navigated those practicalities and realities, and the couple continued to see a specialist counsellor to support them and the children.
“We try and pace what we tell them, and we’re really conscious of not waiting until I’m really poorly to have conversations with the kids,” Simona explained. “The counsellor was lovely, and she had some great suggestions particularly around the children, because that’s the bit we’re trying to move forward with.
“She brings experience and has a different perspective, which is great. As a parent, you always think you know your kids best, but I think you need that input because it’s such an unusual set of circumstances and you just don’t know how the kids will respond or what questions they might ask.”
Will also joined a Ruth Strauss Foundation pre-bereavement support group for partner, which can provide much-needed companionship and connection with people who are in a similar situation.
Frequently Asked Questions
What is the Ruth Strauss Foundation?
The Ruth Strauss Foundation focuses on supporting parents with any incurable cancer to prepare their children. It also focuses on funding research aimed at improving outcomes for people affected by non-smoking lung cancers. The Foundation offers resources, guidance, and support to help families navigate the emotional and practical challenges associated with incurable cancer.
How can the Ruth Strauss Foundation help families deal with incurable cancer?
The Foundation offers a range of support services, including counselling, peer support groups, and resources for families facing anticipatory grief. We provide guidance on how to navigate difficult conversations with your children, manage emotional challenges, and access practical support. For more information and support, please visit our Family Support Services.
Why is anticipatory grief support important for families?
Anticipatory grief support is crucial because it helps families prepare emotionally and mentally for the loss of a loved one. Additionally, it provides a space for families to process emotions, plan ahead, and create meaningful memories together.
How do I tell my children that their mum or dad has incurable cancer?
Telling your children about a parent’s incurable cancer requires honesty and sensitivity. Use age-appropriate language, be clear about the situation, and reassure them of your support. It’s important to encourage questions and express your feelings openly. For personalised guidance and resources, reach out to the Ruth Strauss Foundation for support here.
