Burgess Hill couple hope to raise £15,000 for ‘bouquet list’ after mum’s stage four cancer diagnosis

Anita and Simon Howell, both 47, hope to raise £15,000 through their GoFundMe page.

The money will go towards the pair’s ‘bouquet list’ of things they want to do as a family while they still can.

“I’m not overly keen on the term ‘bucket list’,” said Anita who picked the flowery alternative because she likes the TV show One Day at a Time.

In the show, she explained, the character Lydia (played by Rita Moreno) mispronounces ‘bucket list’ but feels her phrase is more fitting because of its upbeat feel.

The married couple live with their kids – Sarah, 14, and James, nine – and Simon, who is a doctor, is now medically retired.

Anita, who works at Tesco, said she is currently in the process of becoming medically retired too.

Ideas for their ‘bouquet list’ so far include a family trip to Legoland, a holiday to Disney World or New York, and Anita going wedding dress shopping with her daughter.

“We’re not sure I’ll be around for it when the time comes, but if Sarah ever gets married we’ll be going wedding dress shopping,” said Anita.

“That would be quite fun and emotional for me to take her to a bridal salon now and explain why I’m getting my 14-year-old to try on wedding dresses,” she said.

But Anita and Simon said the biggest goal on their list would probably not cost much.

Over the past few years they have written a series of self-published children’s books to explain cancer and kidney failure, which are available on amazon.co.uk.

“I’m still really hoping we can get them traditionally published, that we can get a literary agent or a publisher on board,” said Anita.

She said she wants the books to continue to help families when she and Simon are no longer around and would love to get them into bookstores or shops in hospitals.

The GoFundMe page has raised more than £3,600 so far and Anita and Simon are ‘grateful and amazed’ at this.

Anita said she was diagnosed with primary breast cancer in December 2016, four days before Christmas, and began chemotherapy in January 2017 followed by a lumpectomy in June.

She then started radiotherapy in August 2017 and took Tamoxifen to try to prevent a recurrence.

“There’s never a guarantee that it’s not going to come back,” said Anita, who had yearly mammograms beginning in 2018.

At the end of 2018 Anita said she had a nasty bout of flu and felt some lymph nodes below her right jaw.

She also started getting headaches and got a CT scan in January 2019.

This initially gave her the all-clear but the lymph nodes never went down fully and in January last year Anita woke up one morning with swelling around her clavicle.

It was red and hot to the touch and she had a temperature, so she went to A & E.

After several scans and ultrasounds it was confirmed that the lymph node was cancerous and that the cancer had spread to the other side of her body.

“I had a lumpectomy and lymph node removal in April last year and since then I’ve been on medication to hopefully slow the growth,” said Anita, adding that the cancer is now incurable.

“The treatment now is to give me as long as possible while also having good quality of life for however long I’ve got,” she said.

During this period Simon also had to undergo his own treatment.

He had previous suffered kidney failure before he was 30 and had a kidney transplant from his mother in 2005.

However, this organ did not last long so he had to start dialysis in 2010 before getting another kidney transplant in 2018.

“It’s working well now,” said Simon, but he added that transplants are not a cure for renal failure and at some point he will have to go back on dialysis.

Simon and Anita said they are now trying to make memories with their kids while they can but can get fatigued during the day, which can make it difficult sometimes.

The couple emphasised how important it is for people to check themselves regularly for signs of cancer and to not let fear of Covid stop them from seeing a doctor if they are worried.

They are also encouraging families to talk about their wishes for organ donation in the event that a loved one dies.

In 2021, the law in England was changed and requires people to opt out of organ donation, said Anita.

“But if your family doesn’t know what your wishes are they’re more likely to say ‘no’ and they can block your decision,” she said.

Find out more at www.organdonation.nhs.uk.

People can donate to Anita and Simon’s GoFundMe here.