‘I can’t describe the pain that I felt’

From broken bones to new beginnings

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WHEN the leaves are turning golden and fluttering from the branches, Hayley Hovey feels a terrible ache.

Autumn is a poignant time of year for the 34-year-old because that is when her first child was due to be born.

Instead baby Autumn – named so optimistivally after the crisp, cool and picturesque season – arrived prematurely in the summer.

And four weeks later the tiny girl, who fought with great spirit, died.

Four months after that Hayley was diagnosed with bowel cancer and now knows that the disease was probably responsible for Autumn’s early birth.

Still grieving, she then faced her own battle for life, spending Christmas Day in hospital rather than at home with husband Paul.

She says: ‘Christmas 2011 was going to be incredible, Autumn should have been a couple of months old. Instead we lost her and I was diagnosed with cancer.

‘I was weak, ill and very down. I didn’t think at that point that anything could get any worse.’

Thankfully Hayley, sitting in her Portchester living room and recalling that terrible time, is back to health.

She shows incredible positivity and is grateful that she and Paul had a month with their little girl.

‘Some people don’t even have that. At least we had time to get to know her,’ says Hayley, smiling. ‘She had a personality.’

And she is eager to share her experiences in the hope that she might help others.

The IT consultant is helping Bowel Cancer UK raise awareness of the disease, particularly the fact that it affects young people.

The charity launched its Never Too Young campaign after research showed under-50s were experiencing significant delays in diagnosis.

The problem is that the disease is less common in younger people.

And the symptoms can be vague and indicate other conditions. For women they can be put down to the menstrual cycle and pregnancy.

Nick Bason, of Bowel Cancer UK, says: ‘We hear from young people who feel frustrated that they’ve had to go to their GP multiple times.’

Hayley was never told she was too young to have the disease. But her ill health was confused by herself and medical professionals with pregnancy problems and depression.

The first sign for Hayley was when she was 23 weeks’ pregnant and woke in the night with stabbing pains.

The terrified expectant mum visited an out-of-hours GP and was told it could be ligament pain.

Relieved when the pains went away, she and Paul carried on happily preparing for the arrival of their daughter.

‘We were so excited, I’d always wanted a family,’ says Hayley. ‘We had a room ready with a cot and toys and pretty much everything. ‘

Hayley hadn’t exhibited any other symptoms at that point and does not believe her cancer could have been caught early enough to save Autumn.

At 27 weeks she noticed the baby wasn’t moving. Doctors believe now that a blood clot from the tumour cut off the supply of nutrients to the unborn baby.

When Hayley was told she had to give birth immediately by Caesarian section, she assumed her daughter wouldn’t survive.

But after the birth she heard a tiny cry from the 1lb 3oz baby. ‘She sounded like a kitten. I was hopeful but terrified because she was so tiny.’

Over the next four weeks Hayley and Paul bonded with their little girl.

‘She was like a little bird,’ says Hayley. ‘We could put our hands in the incubator and she’d circle her fingers around my finger. She had a hard grip for such a little thing.’

Hayley was eventually able to hold her daughter. ‘Her heart rate and breathing improved while I was holding her. It was wonderful.’

But Autumn’s condition deteriorated and the devastated parents were given the chance to say goodbye.

‘I don’t think I’ve ever felt pain like that, I can’t describe it. My reaction when they said what would happen was to be sick,’ says Hayley.

Her own health then went into decline, but she didn’t see a doctor for months as she put diarrhoea and tiredness down to depression.

She also experienced some symptoms – including blood when she went to the loo – quite late.

Midwives and doctors had felt a lump in her abdomen but treated it as a possible infection.

Hayley has no complaint about medical organisations or individuals.

But she adds: ‘I feel there could be greater awareness. Instead of saying “see your GP if symptoms get worse”, there should be a more investigative approach.

‘If you have a lump in your tummy, it should raise an alarm. The focus should be on why a 32-year-old is in this pain.’

Bowel Cancer UK has received funding from the Department of Health to work on support and guidance for doctors.

Sean Duffy, Clinical Director for Cancer for NHS England, says: ‘The UK lags behind much of Europe in terms of survival from bowel cancer. We need to change this.’

Hayley knows of other young patients who have died and considers herself one of the lucky ones.

Now the couple are trying for a family and are in the IVF programme in case they don’t conceive naturally.

But their minds are always with Autumn, who is at a natural burial ground in the Meon Valley.

‘We’ve planted forget-me-nots and primroses,’ says Hayley. ‘But yes, it is particularly sad when the leaves are falling down. It’s such a beautiful place.’

Teenager Stephen Sutton (pictured), who died of bowel cancer last month, did a huge amount to raise awareness.

Stephen, who was not diagnosed for six months after his symptoms started, had a family history of Lynch syndrome – a condition that puts people at a high risk of bowel and other cancers.

Hayley Hovey also has Lynch syndrome and a family history of bowel cancer.

As well as launching Department of Health-funded research into developing better diagnostic guides and support for doctors, raising public awareness of symptoms and organising training across the medical profession, Bowel Cancer UK is campaigning for better surveillance screening for high risk groups.

These include people with genetic conditions like Lynch syndrome, those with a strong family history and inflammatory bowel disease patients.

Hayley’s family have been tested and are in a screening programme.

Visit bowelcanceruk.org.uk.