'I may have incurable cancer but I'm still lucky'

When Marianne Williams was told she had incurable cancer at 43 she knew she had to face it with positivity.

Marianne was diagnosed with myeloma, a type of bone marrow cancer, in November 2017, when her daughter was just 11.

"I count myself lucky," she said. "I'm a positive person and I generally tend to look forward and try to think, 'okay, what's the positive in this?' rather than the negative."

Each year she marks the anniversary of her diagnosis by putting on her Wonder Woman costume, something she ordered from her hospital bed during her early days of her treatment.

"I know sometimes in the cancer world no matter what cancer you've got the word positivity can be quite controversial and I don't want to sound flippant about it because for some people they don't feel positive, but I feel like I've got things to look forward to," said Marianne from Corntown in Vale of Glamorgan.

"You can only deal with it in a way that is right for you."

Marianne even managed to find the positive in chemotherapy.

"It's grim, but actually bloody brilliant, I've lost my hair, I haven't got to shave my legs," said Marianne, who is married and has a daughter and two step-children.

"Anything positive is a small win in my opinion."

Marianne was 41 when she began feeling unwell.

She had several bouts of tonsillitis, conjunctivitis, urinary tract infections (UTIs), sore throats, colds, a tooth infection and labyrinthitis, an inflammation of the inner ear's labyrinth.

"I woke up in the middle of the night with the room spinning, vomiting, I couldn't get back to bed standing up so had to crawl back to bed on my hands and knees," she said.

"You start thinking, 'okay, there's something's not quite right'."

Marianne said she made countless visits to her GP but tests picked up nothing apart from the fact her white blood cells were a bit high which was attributed to her recent infections.

Then after suffering for days with a UTI, her symptoms worsened.

"My face, head, hand and feet had swollen," she said.

"My stomach was enormous – I looked like I was pregnant. I'd spent the whole week with horrendous migraines, constant vomiting, dizzy spells and pain across my ribs and back."

The mum was sent to hospital where she was told she had kidney failure with just 6% kidney function and had to begin dialysis.

A number of tests followed before she was told she had myeloma.

"The first thing you think when they say 'incurable' is 'am I going to die then? What does that mean? Am I pretty much near death?

"How am I going to tell my little girl? How am I going to tell my family?'."

According to charity Myeloma UK, Marianne's long road to diagnosis is not unique.

It said despite it being the third most common type of blood cancer, one in four people wait more than 10 months for a diagnosis.

While myeloma is incurable, it is treatable in the majority of cases, the charity said.

Treatment generally leads to periods of remission but patients inevitably relapse, requiring further treatment.

Most cases of myeloma are diagnosed at around the age of 70, and cases affecting people under the age of 40 are rare, according to the NHS.

Marianne began a six-month course of chemotherapy within an hour of diagnosis, followed by a stem cell transplant in June 2018.

She has been in remission since then but a recent blood test showed her levels of cancer cells are starting to rise again so at some point she will need more chemotherapy and another stem cell transplant.

"One of my biggest hurdles is trying to explain to people that it's going to come back," said Marianne.

"They say, 'well, hopefully it won't' and I say 'well, no, unfortunately it does and it will come back, that is the nature of it'... they hear the word remission, and they think that means that your cancer is gone."

She said her daughter has come up with a good analogy.

"She said, 'mum, it's a bit like a volcano. It's not erupting at the moment, but it's there under the surface… just waiting to erupt again so it is always there'."

Myeloma UK said the life expectancy of myeloma patients had greatly improved over recent years, with an increasing number of new and effective treatment options.

It said just over half of myeloma patients in England will live for at least five years and a third will live for at least 10 years.

"I'm over seven years into it so if it's 10 I could have three years, if it's 20 I've got 13 years," said Marianne.

"You can't put a finite figure on it but you're certainly aware you've got less time than your average person."

She said her diagnosis had given her a new perspective on life and she now spends less time fretting over the little things and instead prioritises special time with those she loves.

Turning 50 last year was a big moment.

"It was a chance to say 'yes, fantastic, I'm here, I'm celebrating this," she said.

For Marianne, myeloma does not define her.

"I've accepted it... yes, I have it, I live with it, it is always present in your mind, there's not a day goes by that I don't think about it," she said.

"But I'm very lucky that I have the attitude of 'right, let's just crack on with life for now'."