A mum-of-two who has breast cancer has spoken about the importance of tackling difficult conversations with children head on, especially when you don’t know what the future holds.
Anita Howell, 42, met her husband Simon, 42, when they were working together at the Royal Free Hospital, in London, in 1995. They now have two children together, ten-year-old Sarah and four-year-old James.
The family, from Burgess Hill, West Sussex, have always had to deal with chronic health problems, as Simon was born with Renal Dysplasia, a condition that meant he would need a kidney transplant later in his life.
However they didn’t anticipate ever having to deliver news to their children that while their dad’s life depended on finding a suitable donor, their mum would also be undergoing treatment for cancer.
“To be honest in some bizarre way, it still doesn’t feel real to us both and we keep thinking that we’re going to wake up from a bad dream,” Anita said.
“We have always been honest with our children, so that continued with my diagnosis.”
Simon received an organ donation from his own mother in 2004. He began to get better, but the kidney failed just five years later, sending him back to square one: having to be kept alive by daily dialysis sessions at home until a suitable donor can be found.
As a result, the parents have always been candid with their children about their father’s health prognosis.
Anita said: “As Simon is a doctor and I trained as a paediatric nurse, we used our own medical knowledge to explain dialysis and transplantation in an age appropriate manner.
“The children know for example that daddy’s kidneys don’t work anymore, that grandma gave him one of hers and that sadly that doesn’t work now either, and that the doctors and nurses are looking for a kidney for daddy.
“They also know that daddy needs to do daily dialysis until he gets a new kidney and that daddy has to be careful of his dialysis arm where his fistula is and can’t carry heavy things, including them.”
For almost a decade this had always been the way things were at home and the family were coping, although Anita said the children find it “easier” to presume the worst.
″Sarah is very aware that daddy can’t live forever on dialysis and she’s convinced that he won’t be around when she is grown up because she thinks it’s easier to accept that than to hope he’ll get the call and be disappointed if he does die before the call comes,” she said.
“As a parent it is so hard to see your child not wanting to hope that daddy will be alive when she goes to university or gets married because she doesn’t want her hopes dashed.
“But we can’t tell her that daddy won’t die or even that it’s unlikely that he’ll die.”
The family then faced more difficult conversations when Anita found a lump in her armpit in November 2016 and was diagnosed with stage three breast cancer, just four days before Christmas.
The couple, who who will celebrate their twentieth wedding anniversary next year, then faced the difficult decision of how to tell their children about the second potentially-fatal health prognosis.
“When we got home from the hospital, we sat down with the children and told them the doctors had said I was ill too. That I had breast cancer.
“They know that cancer is when cells grow too fast in our bodies and grow into lumps and this isn’t caused by anything that we, or they, did.
“They know that chemotherapy is very strong medicine that can shrink the lumps but it also stops other cells growing, which is why mummy’s hair fell out and why mummy was so tired and ill.
“They know mummy had an operation to have the lumps removed and that now I’m having more treatment called radiotherapy just to make sure there aren’t any cancer cells left.”
““They found me losing my hair the hardest to cope with.””
“Initially the children didn’t say anything at all, I don’t think James understood. Sarah was probably just as shocked as Simon and I were. Since then they have both struggled at times which is understandable.”
Anita has now undergone six cycles of chemotherapy, a double lumpectomy, had 11 lymph nodes removed, has developed lymphoedema (swelling in the body), and is now starting radiotherapy and hormone therapy.
But the mum does believe that talking about things honestly with their children has helped them to cope with the situation.
Not only that, but understanding what her mother was going through also inspired Sarah to cut off her hair and send a 15cm bundle to the Little Princess Trust, who make real hair wigs for children going through medically-induced hair loss.
The family have also published a series of children’s books about chronic kidney disease and end stage renal failure, as both educational tools and sources of support for other people going through the same experience.
The family want their story to encourage other parents to think and talk about organ donation, and potentially consider joining the organ donation register (4-10 September is National Organ Donor Week).
Or at the very least make their wishes clear to relatives “so that if the worst should happen they will be in no doubt” about what you wanted.
Anita advises other parents who face a potentially terminal prognosis to “be honest” with your children.
“Make sure that anyone else who looks after your children is aware of what you as a family are going through, so that they can support you all,” she said.
“The more support you can get for your family the better. Talk, talk and talk about everything.”