I thought my night sweats were just down to the menopause – but the truth was shocking
WHEN Marion Povey started to experience fatigue and night sweats, she thought it was the early signs of the menopause.
At the time the mum-of-three was 52-years-old and said the heat her body was radiating had been keeping her awake.
In the following months she attended her local GP, and medics were unsure what to do.
But it was at the haematology clinic in her hometown of Bristol that Marion was given the shocking diagnosis of myeloma.
Each year in the UK more than 5,700 people are diagnosed with myeloma - a type of blood cancer that develops from cells in the bone marrow called plasma cells, according to Cancer Research UK - and at any one time there are around 24,000 people living with the illness in the UK.
It is treatable, but is currently an incurable cancer.
Read more on blood cancer
Speaking to The Sun, Marion, who is now 77, said when she first experienced the symptoms in 1997, she didn’t know it would be a condition she would still be living with 20 years on.
She is opening up about her ordeal to celebrate the 25th year anniversary of - the only charity in the UK that is exclusively dedicated to myeloma and related conditions.
In the lead up to her diagnosis Marion said she went to her GP to check if she would be eligible for HRT.
“She did a blood test to see if I was ready for HRT and it showed that my hormones were just on the borderline.
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“I couldn’t get HRT but they thought I might have a vitamin deficiency, and they also kept asking about how much alcohol I drank,” Marion said.
Marion explained that this was because she had a low level of haemoglobin, which is an iron-rich protein in red blood cells that helps transport oxygen through the body.
Marion, who is now a grandmother to four, said she had enough iron and hadn’t been drinking too much - so medics had to keep searching for the problem.
“They weren’t sure what to do.
“But at the haematology clinic, they discovered the issue.
I thought maybe it was menopause or mild anaemia - I thought there would be a straightforward reason
Marion Povey
“It was a dreadful shock at the time, I was resentful, looking back now I was really fortunate.
“It was just such a shock, I thought maybe it was menopause or mild anaemia - I thought there would be a straightforward reason, but it really was no joke.”
From there doctors had to work out a treatment plan for Marion, with the aim being to bring down the level of disease, before then administering a high dose of chemotherapy and a stem cell transplant.
Because of her career in radiography, Marion said she knew what she was letting herself in for.
The chemotherapy was tough and Marion said at the time, they would run it for four days in a row, and you’d be susceptible to infections.
'HARD GOING'
“I did get infections during my treatment. There were special antibiotics which would help clear me up.
“It was really hard going as it was like a powder which you had to draw up, put it in water and then inject it.
“There was so much pressure on the nurses and sometimes it didn’t work and the line would have to be taken out and put back in.
“I had to have treatment for six rounds, it usually took four weeks and sometimes longer.
This was a tiring experience, so six month later when it was time for Marion to have her next cycle of treatment, medics were reluctant - especially as her blood counts had been low - meaning she might struggle to start the next cycle.
What is myeloma and what are the signs you need to know?
Myeloma is an incurable blood cancer that occurs in the bone marrow and currently affects more than 24,000 people in the UK
On average 16 people are diagnosed with myeloma every day in the UK.
Despite being the third most common type of blood cancer, myeloma is especially difficult to detect as symptoms, chief among them pain, easily broken bones, fatigue and recurring infection, are often linked to general ageing or minor conditions.
While it is incurable, myeloma is treatable in the majority of cases.
Treatment aims to control the disease, relieve the complications and symptoms it causes, increase patients’ life expectancy and improve their quality of life.
It generally leads to periods of remission, but patients inevitably relapse requiring further treatment.
Myeloma mostly affects people aged 65 and over but it has been diagnosed in people as young as 20.
What are the signs?
- bone pain
- bone fractures
- spinal cord compression
- pins and needles
- numbness
- anaemia
- repeated infections
- raised calcium levels in the blood
- unusual bleeding
- thickened blood
- kidney problems
At this time, the myeloma protein should have reduced by half but Marions hadn’t.
“They didn’t seem to have any alternatives and this was hard for me to hear.
“So I had the idea that I was entitled to a second opinion so I asked for one at the Royal Marsden.
“They gave it to me and in light of my relative youth they said they would go ahead with the next cycle.”
Marion said she was then in a stable condition for five years before the cancer started to creep back in.
After nine years, medics told Marion she was relapsing and that it would be wise to have treatment once more.
She added: “I wasn’t surprised because I’d had a few nasty infections.”
But Marion was unable to have another stem cell transplant.
Luckily a drug had just become available on the NHS called purinethol and Marion said this had ‘proved helpful’ for many people suffering.
It had been trialled in the UK, so Marion was able to access it and have enough for a second transplant.
Because of how tired the various treatments made her, Marion had to give up her role at Southmead Hospital.
Another five years passed and the cancer crept up again.
Marion said as things advanced, the better treatment options became, meaning she could start to think about a life.
“It’s got easier, to start with I couldn't think about booking holidays or arranging to see people.
'ALWAYS HOPE'
“As time has gone by I realise I have more time. So I've booked the holidays and taken the risks.”
Marion is now on cycle 88 of her treatment, but says it has its disadvantages.
“I am getting more and more tired. I’m not sure how much is down to medication and how much is down to the illness.”
Marion said she had to lie down before the interview and added that fatigue is one of the classic symptoms she has been experiencing.
But in general, Marion said the support for symptoms is much greater now.
She’s praised Myeloma UK for their help through her diagnosis and illness as it was the charity she reached out to when she was struggling with her condition.
“I got in touch with them in the summer of 1998 and they were just brilliant.
“So much research has been done since my diagnosis and there is always something else they can put me on.
“There is always hope,” she added.
Myeloma UK Chief Executive, Dr Sophie Castell, said: “When Myeloma UK first launched, the outlook was very bleak for patients.
"There was no specific treatment for myeloma, life expectancy was just one to two years and very little was known about this incurable cancer.
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"But today the average life expectancy has quadrupled, there are 12 treatments currently available on the NHS, and more in the pipeline, and we’ve invested £19 million into research - including life-changing clinical trials for new drugs, which we hope will one day lead to a cure.
"Our goal is to make sure patients can live a full life and we’re working towards this every day."
