Richard’s story: Telling our children their mum was dying

I want to write about how we spoke to the kids about the fact their mum was dying. In case it helps others facing similar challenges.

Being 10 years ago, though, you might think I would’ve forgotten. But you don’t forget this stuff. And, with the added benefit of 10 years’ reflection, I hope I can offer some hope and positivity.

Heather was originally diagnosed with cancer in 2004 when she and I were both aged 36. We’d been blessed with three lovely children: at that time, Adam was just 1, Felicity was 4, and Katherine was 5.

That background is important to understand how we all felt about cancer. For the next decade, as Heather was rearing her beautiful kids, they would often accompany her to hospital and play board games whilst she was receiving various doses of chemotherapy and other treatments.

So, for our family, cancer was never really a hugely scary concept. The chemotherapy kept Heather well enough to be a mum, except for various annoying side effects, and life trundled on.

Even after five years, when the cancer metastasised to Heather’s liver, things carried on. Heather’s chemo/antibody regimen changed, and she was more or less OK (but often very tired) for five further years. We are enormously grateful to the NHS for these 10 years we had with her.

But by early 2014, Heather was in a lot of pain. Tests showed the cancer had moved to multiple sites in her bones. In March, Heather’s oncologist told us the cancer was terminal, with less than a year to live.

For us, this was the first time that cancer had got really serious. Remember, cancer had been part of our household for a decade, so it was no big deal. But now it had become a very big deal.

Our local health professionals were superb, not just clinically, but also giving wider support. Something one of the cancer support team said to us at Easter 2014 was really key – she said:

“We don’t know when Heather’s going to die, but we do know it’s going to happen, so you might want to consider telling the children, so that they’re aware and can ask questions”

That was really great advice, but how on earth do you act on it?

Heather, now 46, needed an urgent hip replacement because of a tumour at the top of her femur, but she was now back home, and well enough to do some things and laugh with us all.

Katherine and Felicity were busy being teenage girls, and Adam was in Year 6, just starting his final term at Primary School.

11 is really quite young still, isn’t it? So Heather and I decided we’d talk with Adam alone first.

One Saturday at the end of April, Katherine was due to see McBusted with friends and then stay over with one of the friends afterwards. Felicity also had a sleepover at a friend’s for their birthday party. (Heather insisted normal busy teen life must continue.)

So we had Adam to ourselves. Mummy was upstairs in bed and we said, because it was just us three, we could all watch Mamma Mia together on the laptop on DVD.

All snuggled up in our bed, before we put the film on, I said (Heather delegated the task to me – she said if she was dying, the least I could do was do the telling – humour’s really important):

“Adam, we need to talk to you.”

What I had to impart was simple:

“Mummy’s going to die, and probably quite soon”

But I found opening my mouth and actually saying those eight words to our 11-year-old nigh on impossible.

One thing is, you’re actually telling yourself at the same time. Of course, rationally, you’ve heard the terminal diagnosis. But it’s way more real when you hear yourself uttering the actual words.

The girls were due home from their friends’ houses mid-morning the next day.

Of course, they were buzzing after their respective nights at the O2 and the friend’s sleepover.

They both came upstairs (Heather was in bed pretty much all the time now) and told their mum excitedly about their nights.

Then it was me once again who had the task of bringing the mood crashing right down:

“Girls, I’m so glad you both had such great times last night. So I’m really sorry that we need to talk to you about something now. You know that mummy’s been having lots of extra treatments for her cancer recently. Well, it doesn’t look as though she’s going to get better this time. In fact, it seems quite likely that mummy’s going to die. And it could be quite soon. We told Adam last night – we hope you don’t mind we told him first.”

Ten years on, I’m crying again writing those words. It was probably the rawest day of my life.

Hugs and crying (mainly by Heather and me again) followed, but once again there weren’t too many questions from the girls.

Then, from Heather:

“Right, go downstairs now and help daddy make lunch.” (Normal life is a saviour!)

This is where I can maybe offer a little hope?

Now, in 2024, as a 22-year-old adult, Adam reflects that he didn’t really understand what was happening then. Remember, Heather had had cancer all of his life, so it was just part of life.

In fact, years later, all three children have said they didn’t really “get” what “mummy is dying” meant until she was actually dying, you know, when Heather was very clearly in her final days.

So, my reflection is that telling Adam was maybe a lot harder for me than it was for him. Of course, Heather and I were crying before I was even halfway through the eight words.

Adam didn’t really have many questions. A big tearful cuddle, and putting on Mamma Mia (with snacks), gave all the reassurance we were able to offer him, and (I hope) all that he needed.

Over the next few hours, Heather’s hypercalcaemia (too much calcium in the blood because of the tumours in her bones) developed rapidly. She became very confused and then inert, and our GP got her admitted to hospital just a few days later.

Heather then spent a fortnight in hospital, then a further fortnight at the Sue Ryder Duchess of Kent hospice, then came home for her final three weeks in June.

I was so glad that, following the cancer support team member’s advice, we decided to tell the children their mum was dying. It meant that Heather’s rapid deterioration, and her final weeks, in hospital and then at home, all had context. Or at least I felt we had given the kids context.

Heather’s condition was stabilised and managed in hospital, but then we all decided it would be nicest for all of us if she could come home, if that would be possible.

Heather came home from hospital on 1 June 2014, and died early in the morning of 25 June, on a hospital bed delivered to our house and set up downstairs in our lounge.

Those 24 days were, and remain, incredibly precious.

It was a joy and a privilege to witness Katherine, Felicity and Adam do things for their mum, whilst continuing with school and all their many activities (at Heather’s insistence).

I offered all three of the children the opportunity to talk, if they wanted to, with others, such as a local charity supporting children dealing with cancer in the family. But none of them opted to do that. A community nurse visited daily, so we all had a route to ask questions if we wanted to.

Friends and family members visited Heather most days over her last three weeks. Everyone knew they were coming to say goodbye for the last time. It was an incredibly raw time, but also immensely powerful, with all the niff naff and trivia of normal daily life fallen away. And Katherine, Felicity and Adam were a tremendous support for me, and Heather, during all of it.

Heather’s mum (who lives 200 miles away), widowed and in her late 70s at the time, visited on the final weekend. We all looked together at old family photos from the 1960s and had a laugh.

There were lots of different losses going on of course. The kids were losing their mum, and I was losing my wife. But my widowed mother-in-law was losing her daughter. It’s all confusing and I’ve spent years subsequently reflecting on what’s happened to our family and what it means.

So the kids and I have been around cancer for 20 years: the first 10 years with Heather living with it, the second 10 years after Heather had died.

As they’ve grown into their 20s, I think they’ve all recognised more deeply what they’ve lost. For example when they see their friends having adult relationships with their mums.

Ten years on, I remain confused a lot of the time. Heather’s in my head much of the time – is that healthy? – I’ve no idea, but I don’t want to forget her.

Learning how to look backwards and forwards at the same time is what the Dual Process Model of grief is all about, but that’s maybe the subject of another blog.

I read something recently which resonated with me: it was a review of Selena Gomez’s documentary My Mind & Me about her mental health challenges. The review said it’s “not a movie about healing so much as a movie about learning to hurt in the healthiest way possible”.

That nicely sums up how I’m trying to live now, I think, and how I’m trying to help Katherine, Felicity and Adam live healthy, positive lives.

I’ve tried to do the best I can for them, both whilst their mum was dying, and since.

But we’re only human, and it’s not straightforward. And I’m still learning as time passes.

I’m so sorry if you’re reading this blog because you’re facing a similar challenge in your family.

From my experience, I would say: be kind to yourselves, savour every moment with loved ones, and you and your family will probably be a lot stronger than you think.