Was I right not to tell my little girl she was dying? After being told 13-year-old Rachael had months to live her mother hid the truth



Life cut short: Rachael, who died at the age of 17, never knew how ill she was

Jeanette Gilderdale knew it was bad news before the doctor even said a word. It was written all over his face. 'How long has she got?' she asked.



'Christmas if you're lucky,' he replied. It was now July. That meant just six months before her 13-year-old daughter would die.



Jeanette started to cry, but then stopped herself. She couldn't fall apart. Not now.



She wiped her eyes, shook the doctor's hand and left, before walking down the hospital corridor to where her daughter, Rachael, and her own mother, Daphne, were sitting.



'What did he want, Mum?' Rachael asked. 'Oh nothing,' shrugged Jeanette with her best attempt at a smile. 'He was going through all the same stuff he told you already, just about the operation.'



In that split second, Jeanette made a vow: she would not tell her daughter the truth about her condition. 'I couldn't have her waking up every morning wondering if today was the day,' says the 49-year-old nurse from Eastbourne.

'So I made a decision that I've been criticised for, but which I have never once regretted. I was not going to tell my daughter she could die.'



Even though Rachael defied doctors' expectations by living for another four years, her mother never told her about her bleak prognosis.



Jeanette first spotted the mole on the back of her daughter's right knee in May 1998. 'It was the first day she'd had bare legs after a winter in tights and I spotted it straight away,' says Jeanette.



It was the shape and size of a four-leaf clover. It was three different shades of brown and was raised and uneven. I knew it didn't look right. I'm a nurse, but it wasn't a nursey feeling - it was a mother's intuition.'



The GP assured them that it was nothing to worry about, but on Jeanette's insistence agreed to remove it. The minor surgery was booked for a few weeks later, when Jeanette was due to be on holiday in Malaysia with her sister.

Her mother Daphne was looking after the children, who were on their summer holidays, and agreed to take Rachael to the hospital.



'A week later, Mum got a call from the GP's surgery,' says Jeanette. 'The doctor told Mum that the mole was actually cancerous and Rachael needed to be admitted immediately to Queen Victoria Hospital in East Grinstead to have a second biopsy, in which a larger area was removed.

Painful secret: Jeanette Gilderdale decided not to tell her daughter her cancer was terminal

'They wondered whether they should call me back from holiday, but decided against it because I hadn't been away in years and they thought I'd need all the strength I had when I got back.'



So instead, Jeanette faced the bombshell when she came home. 'I noticed the bandage on Rachael's knee immediately,' she says. 'She made me a cup of tea and said: "Mum, I have something to tell you ... I have cancer."'

'I can't remember what I said, I was too shocked,' continues Jeanette.



'But then my mum said it was skin cancer and I said: "Oh, that's the best kind of cancer to get, it's easily cured."



And that's what I thought - I just thought they were dangerous moles that could be removed.'



When Jeanette and Rachael went back for the results of the second biopsy, the consultant, Keith Cullen, explained that Rachael had a malignant melanoma - the most dangerous form of skin cancer, which now affects 10,000 Britons a year. He asked if Rachael had spent a lot of time in the sun - the main cause of the disease.



'I told him she had no interest in sunbathing,' says Jeanette. 'And I had always been so cautious with the children, who are pale with blonde hair, covering them in sunscreen.'



Mr Cullen said there was no definite explanation - only that there must be a genetic factor involved - even though there is no family history of the condition.



He said that with malignant melanoma, the first line of treatment involved removing the tissue surrounding the mole in the hope of stopping the cancer from spreading.

Only if it had spread would they consider chemotherapy and radiotherapy.

Tragic: Rachael, who died a month before her 18th birthday with her mother Jeanette

'But it wasn't until he called me back in, when Rachael was getting dressed in a side room, that I realised how serious it was,' says Jeanette.



'He explained that malignant melanomas are measured on a scale of one to five. Level one is the least dangerous and level five is fatal. Rachael was the top of four. He gave her six months before the cancer would spread to other organs and kill her. I didn't ask him any questions. I just walked out.



'I just couldn't believe it. How can you tell a 13-year-old that she's going to die? You can't. I didn't want her living with fear. I wanted her to have a normal life, however much of it she had left. So I put my tears in my pocket and pulled out my smile. And I kept that smile for the next four years.'



The only person Jeanette told about her daughter's death sentence was her mother, who also agreed not to tell Rachael.



'I had no doubts as to my decision. There was no dilemma about telling her father, my ex-husband. He had nothing to do with his children after I left him. And I couldn't tell her brother Christopher, who was just two years older, because they fought like cat and dog and I didn't want him saying it to her in the middle of a row.

'The school knew she was having the operation, but I never told them the prognosis. I knew the more people I told, the greater the chance she would find out. And I didn't want that to happen.'



Four days later Rachael had emergency surgery at St George's Hospital in London, to remove almost half of the flesh and muscle from her calf and all the lymph nodes at the back of her knee. As far as Rachael was concerned, the operation would fix the problem.



'She was in a wheelchair at home for the first couple of weeks while the wound healed, but she didn't complain,' says Jeanette. And two weeks later there was good news.



'When we went back a fortnight later to have the stitches removed, this new consultant believed that they'd managed to remove all the cancerous tissue. It also didn't look like it had spread to the lymph nodes.



'I was elated - his opinion was a far cry from the first consultant's. He told us that if we got to five years we could say she was in remission. We left the hospital that day with hope.'



Indeed, as Rachael's four-monthly and then six-monthly check-ups passed without problems, their hope was rewarded.



'When she first returned to school she was bullied for her unsightly scar, but Rachael was mature and coped with it. She hated going for check-ups, but beyond that we never talked about what had happened to her,' says Jeanette.



Instead, she became exactly what she should have been: a normal teenager. 'We'd have the usual mother-daughter rows about playing music too loud and not coming home on time.



'She got a boyfriend, passed her GCSEs and went to sixth-form college. She was hoping to join the RAF one day,' says Jeanette. 'Throughout this time, I also tried to cram in as much as we could. We went on holiday to Florida and took lots of day trips.'



But the burden of keeping the secret took its toll on Jeanette. 'I would have nightmares about the cancer spreading around Rachael's body,' she says. 'My only release was going to my mother's house, where I'd cry for hours. It was a huge burden for her, too, she was - and still is - my rock.'

Happy memories: Rachael as a little girl celebrating Christmas with her mum and grandmother Daphne Grenall

It wasn't until October 2001 when Rachael was 17 - four years after the first diagnosis - that she started to feel unwell. At first, it was severe period pains and lower-back pain.



The GP said it was probably just hormonal, but referred her for bone scans to be safe. They came back clear. Then came diarrhoea, which was dismissed as a tummy bug.



Throughout this time Rachael continued to go to school, but Jeanette was getting increasingly worried.



'We had been warned to look out for lumps in her armpits, groin or breasts - and, of course, changing moles. And these other symptoms seemed so unrelated. But I felt in the pit of my stomach that something was wrong.'



Then one morning in March 2002, after weeks fighting a chest infection that she couldn't shake off - which again was put down to just a normal infection - Rachael fainted while stepping into the bath.



'I heard a thud and found her unconscious. She had cut her face badly on the plug hole and was bleeding heavily.'



'Rachael was rushed to hospital, where she regained consciousness.



The doctor accused her of drinking the night before and she shouted at him: "I wasn't drunk, I'm sick."



'But when they asked about any significant health problems and we mentioned the melanoma, he was extremely dismissive. I might just as well have told him she liked Toffee Crisps, for all the interest he showed. She was sent home with stitches.



'After that, Rachael never really recovered and was unable to go back to college. A few weeks later she found a lump in her breast. I felt it and told her not to worry, that we all get those from time to time, depending on the time of the month, but I felt sick to my stomach and I could tell she was terrified.'



Just one month later, after a biopsy of her left breast, the worst was confirmed: the cancer was back. 'We were in the hospital and she turned to me and said: "Mum, I'm dying."



It was the first time Rachael had talked to me about her health, the first time she'd said the "D" word.



'But I still couldn't bring myself to tell her the truth, so I held her and said: "No darling, I won't let them." I don't know who I meant by "them".



'She started to shout at me. I don't remember what she said - she just had to vent her frustration at knowing that she was going to die. I tried to hold her and calm her down and then she went in on herself, saying nothing. It broke my heart that I could not make it better.'



At this point, with time running out, Jeanette knew she couldn't keep this a secret from the family any longer.



'I phoned everybody from the hospital. They weren't angry at me, but they couldn't understand how I'd coped with keeping this to myself.



'I didn't expect the reaction we got from Rachael's dad. The last time he'd seen her she was five years old, but he drove through the night, down from Middlesbrough, and turned up at the hospital in the morning. Christopher also came back from university and was utterly distraught.'



Over the next few days - before any treatment had started - the full horror of Rachael's condition emerged as more scans were taken. 'There was a tumour on her ovary the size of a grapefruit. She also had something in her bowel and in her throat; she was literally riddled with it,' says Jeanette.



Her lips started to go blue with poor circulation and a scan showed there was melanoma in her heart.



'As Rachael started getting confused, it emerged she also had a tumour in her brain.



The speed with which it progressed was horrific. She could walk when they found cancer in the breast - 36 hours later, she couldn't even sit up in bed.



'We all stayed by her side for two weeks. She was just six weeks from her 18th birthday, so we'd spend hours talking about what she'd like to do. But every day she became more tired.'



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She was never told the extent of her cancer. The doctors said that if she asked, they would have to say, but she never did.



After two weeks in hospital and one round of chemotherapy - which doctors hoped would keep Rachael alive long enough to see her 18th birthday - her care became palliative and she was sent home with morphine and anti-sickness pills.



Nurses from Macmillan and the local hospice stayed in the house, along with Rachael's father and Jeanette's parents. 'The first week, Rachael was conscious and chatty.



'I slept in a camp bed next to her in the living room. But then she deteriorated, rapidly.



'I couldn't touch her because it was too painful. She used to say: "Mummy, the sheets hurt." In the second week, she started to go in and out of a coma. At this stage, I wanted it to be over - there is nothing worse than seeing your child in pain.'



Then on May 16 at 2.50pm Rachael took her final breath in her mother's arms - a month before her 18th birthday.



For her funeral the family had a party with hot dogs, which was what she'd planned to have for her birthday party.



'Seven years on, I think of her every minute of every day,' says Jeanette. 'Some days I miss her so much it's hard to stop myself from collapsing in a heap in the corner and never getting up.



'I know she was my daughter and was with me for 17 years, but sometimes I think, did I just dream her?'



On top of her job as a nurse, Jeanette now devotes much of her time to fundraising for Rachael's House, a charity she has started to provide holiday respite care for teenagers with cancer.



She says that she never regrets the decision she made to keep Rachael's condition from her, despite being criticised by friends who believe Rachael had the right to know.



'Nobody knows how they'll react in that situation,' she says. 'One minute she was 13 with her whole life ahead of her, the next everything is turned upside down.



'I still argue that I did the right thing. People shouldn't condemn me for what I did, but I take great comfort knowing that my daughter had almost four years of going to bed every night believing she would wake up the next morning.



'She had four years of being a normal teenager, not four years of fear and dread.



'I doubt she would have lived as long as she did if she'd known - she would have given up.'

• www.rachaelshouse.org.uk

