Rich went to see his doctor about a sore shoulder which he thought was a tennis injury
With busy jobs, three young children and weekends packed with fun activities, life seemed sunny and positive, but Louisa Baillie, 43, couldn’t have imagined how different life would be just a year later.
In January 2020, Louisa’s husband Rich found out he was suffering from incurable bowel cancer. Just 11 months later, Rich died in November 2020 at the age of 41, leaving Louisa, then 38, and her three young children, then aged 4, 6 and 8, utterly devastated.
“My husband was the most tremendous man ever in the world, he was just wonderful,” said Louisa, from Bristol. “A lot of the conversation around bowel cancer is that if you catch it early, it’s highly treatable, and, the image that’s projected of it is that you have symptoms that you can catch early, but for him, he didn’t have any warning signs.
“There was no blood in his stools, and he was a super healthy, fit and active guy.”
The only point of worry was a painful shoulder, which led Rich to go to the doctor. The doctor said he had probably pulled a muscle after playing tennis, but the pain got worse and worse. He also had a pain in the side of his body.
In January, Rich went back to the doctors, and had now started experiencing blood in his stool. He was put on a two-week cancer pathway and given some scans. Rich and Louisa were taken into a room by an oncologist and given some earth-shattering news.
“The oncologist said, ‘You have stage four bowel cancer’,” Louisa said. “He said: ‘There is nothing we can do. This is terminal, and whatever I tell you now, you won’t be able to take in, because this is such huge news, so we’re just going to leave you to just digest this.’ And then they left us.”
The couple had feared something like Crohn’s or colitis, but there was no build up to the shocking news. The bowel cancer had spread to Rich’s liver, enlarging his diaphragm, which is what was causing his shoulder pain. “It was like a total nuclear bomb had gone off in our life,” Louisa said.
Rich had to attend most appointments on his own as the pandemic hit, and the couple’s young children were off school at home. Rich had six rounds of chemo over the next few months. When it finished in July, the hospital advised taking the summer off, with new scans scheduled for October.
“It was so isolating,” Louisa said. “Wherever I looked, there was nobody like us. There was nobody that could appreciate or even begin to imagine what we were facing.”
With three children she felt overwhelmed and unsure how to protect their emotional stability which was Rich’s greatest concern. After feeling dismissed by doctors and charities, they turned to the Ruth Strauss Foundation, inspired by Rich’s love of cricket.
The former England cricket captain Sir Andrew Strauss, set up the charity in honour of his late wife, Ruth Strauss, who died from an incurable lung cancer that affects non-smokers. The foundation provides emotional support for families to prepare for the death of a parent and raises awareness of the need for more research and collaboration in the fight against non-smoking lung cancers.
Louisa contacted the foundation and had a response within an hour, offering compassionate, practical support that helped them talk openly as a family, prepare the children and gave Rich a meaningful way to stay present for them. Louisa was put in touch with a counsellor who had vast experience of dealing with families facing loss.
“She was just so comforting, and that’s what I wanted,” Louisa said. “I just wanted somebody to talk to me and say: ‘This is awful, and this is going to be so difficult, but this is what you need to do.’ I needed somebody to give me some guidelines.”
The foundation advised Louisa and Rich not only on how to prepare for the worst, but how to have the most difficult conversations imaginable with their children. Louisa began writing a diary of everything the children did for their dad, such as fetching him water or helping with his compression socks.
The charity sent the family booklets for Rich to fill out with the children, which helped explain to them what would happen. “When a child has a parent that is terminally ill, my view is to be as open and as honest with them as possible in an age appropriate way,” Louisa said.
“Because even though they were so young, we said: ‘You know, Daddy’s really, really poorly, and the doctors are trying to do everything they can, but this is something that he’s never going to recover from.’ As time went on, when the hospice got involved, and they gave a timeline, I could prepare the children.
“I never wanted the children to afterwards say to me, ‘Why didn’t you tell us?’ Or ‘why weren’t you honest with us? Why did you let us think that Daddy was going to get better?’ The Ruth Strauss Foundation held my hand for that. They acknowledged it, and a lot of people can’t acknowledge it. I think if they haven’t been close to such profound loss, our culture just doesn’t allow for those conversations to happen.”
Louisa had reached out to other charities without success, but she found that the Ruth Strauss Foundation was the only one in her experience who dealt with the difficulties for the family as a whole. “There are lots of cancer charities that deal with the person who is poorly, and bereavement charities for children,” she explains.
“I called lots of them when Rich was poorly and they said, ‘You have to call us when he’s died,’ which is a horrific thing to hear. For Rich, we were his absolute world, and the one thing that broke his heart was that he was going to leave us and rupture our wonderful family life.
“Him knowing that we had that support from the charity allowed him to think, ‘It’s okay, we’ve done right by the kids. We’ve done everything that we can.’”
When Rich devastatingly died in November 2020, the charity continued to support the family through their most difficult times, becoming a steady lifeline for Louisa and the children. Five years on, Louisa describes the foundation as ‘one of a kind’, and the only organisation that truly understands what families need when a parent is dying.
She hails the charity’s Schools Programme which offers school and education staff free training in the skills and confidence to support students through anticipatory grief and bereavement, as a school’s response to a terminally ill parent is vitally important in supporting the children.
The loss of Rich affected Louisa profoundly and she decided to start a Masters in psychology and neuroscience to do more research into what grief does to children. She now works as a child therapist in schools.
Louisa was supported by the charity as she navigated the family through the next few years. “I haven’t ever stopped talking to them, I’m just so eternally grateful to them for filling that huge gap for us as a family,” Louisa said.
“My advice to anybody that is facing a terminal illness and that have children, is to get through it to the other side. Start these hard conversations as one family unit rather than leaving it for the sole parent to navigate from a standing start in the aftermath of the death.
“The more you can go through it as a family and deal with it as a family, you feel like you come out the other side as a unit, because you’ve done everything you can together that you possibly could.”
Deepa Doshi, Director of Client Services at the Ruth Strauss Foundation, said: “We know ‘doing death well’ , giving families the chance to have open conversations about grief, death and dying, has a hugely positive impact on childhood and later life versus kids in families who don’t get the support to have these conversations.”
“They will be some of the toughest conversations a family ever has but also the most important and we are here to support that.”
