B is for Breast Cancer: the book I leave my children | The weekend

IA few days before Christmas with Lucy, a ten-year-old character in a children’s book B is for Breast Cancer, has been to the garden center with his five-year-old brother Jack and their grandfather to buy decorations for the tree. Lucy has chosen a silver star and Jack a snowman, and they can’t wait to tell their parents. Meanwhile, my mother and father have just seen a doctor, “and my mother said she also has something she wants to tell us”.

It’s just the way it was, says author Anita Howell, 48 – mother of Sarah, 15, and James, 10 (Lucy and Jack are their middle names). “We got the news that it was bad four days before Christmas, in 2016.”

Sarah had seen him and he examined himself with his arm and knew that something was wrong. So I was saying to her, ‘Mom you got the knob. Hopefully it’s not cancer. But my mother has to go and do these tests.’ ” When the results came, she says, “Sarah remembers not sitting down because she knew it would be bad news.

B is for Breast Cancer is Anita’s fourth illustrated children’s book that clearly explains the details of serious illness and treatment and how the family can be affected. She and her husband, Simon, had also written three books about kidney disease, because she had been failing for more than ten years. Obviously, this is not a common children’s myth, but the responses from families facing similar problems have been overwhelming.

Children ask very big questions that adults may struggle to answer. James asked, when his mother was found: “Who will take care of us if you both die?” After that, Anita was given chemotherapy, surgery and radiotherapy, but in the middle of the epidemic she got lumps in her lymph nodes. Tests eventually revealed what doctors initially believed to be a second cancer. It has progressed despite treatment and, he says, may not be curable.

He says: “Fortunately, we were able to say that they have wonderful caretakers who will love and care for them. But I said I hope it won’t be necessary and won’t happen for a long time. I still hope they will be adults before Simon dies. That they are relaxed and happy.” However, he adds: “It will still be very small.”

James says he hasn’t been able to talk about it since. “But if it’s confirmed that my situation is six to twelve months, in the next few weeks, then that’s going to be a conversation I’m going to have to have with him.”

He says: “You always want to protect your children. But we always thought that if you try to hide things like this from them, they will worry more than if you are honest. They will do something. And often their conclusions are worse than the truth.” He laughs. She wears red lipstick and starts laughing a lot.

He says: “Sarah really wants to know things the way they happen right away. That’s how he works everything. James struggles even more. He would rather know only what he needs to know. ”

Simon was first represented in 2005, two years before Sara was born. He left his job as a young doctor when their daughter was two years old because the work pressure was too much. Anita, who trained as a pediatric nurse, says: “She had to protect her implant and be there for us as long as she could.” He lost the first transplant, and had to wait until 2018 for a second. “Who knows how long it will take for a third part – if it’s even possible?”

Anita Howell with her husband Simon and children Sarah, 15, and James, 10


Anita and Simon met in their early years, when they both worked in a hospital in north London. They have been married for 25 years. “We both laugh,” he says. And I appreciate his kindness. He is sitting in his living room in West Sussex as he talks to me on Zoom; the wall behind him is covered in framed family photos.

When Simon started hemodialysis at home, it affected his strength and his ability to pick up his daughter. Anita says: “These are the things that the children will ask themselves. We started looking for a children’s book that would help Sarah understand, but not just discourage her.”

There was nothing available. So they published their own. For any life-changing situation, she says, “whether it’s a new baby, or starting school, or potty training, or anything that affects a child, there’s a book to stay with read it with the child to help them understand and participate.”

In 2016, when James started school, Simon’s treatment changed again. Anita says: “We thought a picture book would help us. They announced K Is for Kidney Transplantation, and two books on dialysis. He says: “I get a lot of benefit when I hear comments from certain families, ‘Thank you so much for writing them.’ “When I get feedback that books are helpful, it makes my day.”

Anita doesn’t feel sorry for herself, but when you talk to her you realize a little bit what a family in this kind of situation has to bear. Sarah says she grew up waiting for her father to be represented, she says. “It became very difficult to trust – ‘It won’t happen, my father will die.’ “Anita says that sometimes she has a problem too. “I go to the worst place first, and then I withdraw from it. It’s hard to see your child follow your example.” But you understand the reasons – you say to yourself, “At least I fixed it.”

The books, which feature vivid, medically accurate illustrations by award-winning artist Sue Roche, are aimed at children aged seven to nine – “either children who are patients themselves or who have a family member who is sick”. On the front of each is a heartfelt message from the Howell family – most recently: “Dear Reader, We are sorry that breast cancer has touched your life”.

Anita’s main symptom was fatigue. But we didn’t catch it. I reduced my fatigue to being a mother of two young children, and having a very sick husband.” But towards the end of November 2016 “I took a shower one Saturday evening, and I felt a big lump in my arm”.

She was quickly transferred to the breast clinic. She says: “We all hoped it was just a gland, but when they did the ultrasound they found two more lumps in my breast.” A biopsy revealed that it was an aggressive stage 3 cancer.

Anita endured six rounds of chemotherapy before undergoing surgery and radiotherapy. The plan, he says, was to use tamoxifen for ten years, “because I was young”. But he noticed that the lymph nodes in his neck were enlarged. Then, in the middle of the epidemic, he got a lump in his clavicle. “We went from it being a local operation to being a second cancer, and being good in my lymph nodes.”

After more than a year of intensive treatment, last summer he took a break. “We were able to have a family vacation,” he says. They flew to Florida. He laughs at the thought – “It was amazing!” But in the fall he was told that death had reached his back. He is on IV chemo and has other tests booked. “But it doesn’t look good,” he says.

These books are voluntary, and the couple’s dream is for a traditional publisher to take them – his and Simon’s legacy – to help others, and make them available in schools. Sarah and James are very proud of these books, says Anita. And you can imagine their parents. “James has gone to school, twice now, for World Book Day as he likes,” he says with a laugh.
B is for Breast Cancer
available from amazon.co.uk and via the Sussex Cancer Fund online shop

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