Susan Page, London

My daughter was 23 when she died of bowel and neuroendocrine cancer on the 8 January 2012.

Lydia was 21, and had just completed her first year at Nottingham Trent University in professional photography. She absolutely loved it.

When she was back home for the summer, I remember sitting with her in the front room and she mentioned that she had a pain on the right side of her tummy. She was very active, didn't smoke and, like me, a vegetarian – I just thought that she sprained herself at the gym, she over did it. She didn't complain too much about it.

When she returned to university, I spoke to her almost daily and she mentioned the pain again. I encouraged her to visit the GP on campus, which she did. They said it was highly likely to be indigestion, or irritable bowel syndrome. She was given some medication to alleviate the pain. She came home during a reading week, and she looked noticeably thinner. I urged her to visit our GP but she resisted as she wanted to finish the course of medication before going back. In hindsight, I should've picked her up and taken her myself.

She went back to university and when I rang her she sounded dreadful. I offered to come up but she didn't want me to. Instead, she went to hospital. They couldn't find anything wrong. She went back to her student house but at the beginning of December she felt much worse. On the 3 December, she was admitted to hospital and when she rang me from there, I jumped on the train to Nottingham.

I never left her side and the nurses gave me a mattress so I could stay with her. Although I did sometimes have to fight for this, she was an adult – not a child who they treat differently. I looked after her, she was getting incredibly weak and wouldn't eat. If I fed her half a tub of yoghurt, that was success.

Six months prior to her being in hospital, my brother was diagnosed with bowel cancer. Lydia and I went to visit him, and looking back she had bowel cancer too but we just didn't know.

She had lots of scans and blood tests, and one of the scans found lots of speckled tumours in her liver. They had to take two biopsies, as the first one didn't show she had cancer but she definitely did. Although at this point they didn't mention cancer, I knew that they were looking for it as it was the exact same tests that my brother had. I couldn't get any of the doctors to be straight with me, but I knew it was serious as their body language gave them away.

After a few weeks of being in hospital, she got discharged on the 20 December. She was very weak but had lots of medication and morphine, and all the tests results were going to be sent to her GP in London.

We got the train home to London, and she started talking about my brother Colin, her uncle. She thought it could be bowel cancer, I didn't think this was the case as the symptoms were different. It was the first time she said that she was bleeding when she went to the toilet. It was like an electric shock that went through me. It was also the first time that she said she'd been to the hospital before when she first noticed, but they just said that it was her stomach bleeding from the ibuprofen.

We spent Christmas at home with the family. It was heartbreaking as she normally loves Christmas, especially us sat around the big family table but this year she could barely eat more than a few mouthfuls of soup.

Lydia had an appointment with the GP on the 29 December, and I went with her. In the waiting room, I braced myself for the worst but told myself that I needed to be brave for her. The GP asked Lydia what she thought her diagnosis was, but she didn't have a clue and the doctor confirmed it was cancer. At that point we had no other details but they knew it was incurable. It was such a huge blow, but we were also finally getting somewhere.

We left with more medication, but had an appointment with the oncologist at the Royal Free hospital for 7 January 2011. She looked dreadful, I knew that she would be admitted but didn't want to scare her but encouraged her to pack an overnight bag 'just in case'. The whole family went with her, her dad and our three sons. After a few more tests, they confirmed it was bowel cancer. However it had already spread to her liver and the characteristics had changed, it meant that she was also diagnosed with neuroendocrine cancer – incredibly rare for young people, as is bowel cancer. They said it was just bad luck, I'm sure they didn't mean it so flippantly but it was really difficult to hear.

Lydia asked to see the oncologist by herself, she wanted to know how long she had without the rest of the family hearing the news. They told it was months. I wanted to know too and asked the oncologist, she was wary of breaking patient confidentiality but she did tell me. I knew that she had very little time, but her dad wouldn't accept it. He thought she would get through it.

She had ten cycles of chemotherapy and responded very well to it. She was able to see a few friends over the summer, started driving again. She wanted to return to university in September, and the course leaders were happy for her to come back. I really didn't want her to go, but she loved her course, it made her very happy and I didn't want to 'clip her wings'. However she only lasted a week, she was too exhausted so we picked her up.

Sometimes she was able to go out with her friends, but one evening when she returned she was crying. She realised that it was never going to be the same night out they were once able to enjoy. It broke my heart seeing her like that. As a mother, a parent, I wished I was going through it, not them. I wanted to make it better, but I felt absolutely helpless. Cancer was this terrible thing that crept up on us – I didn't see it coming.

She was scheduled to have an operation in October to remove the tumour in her bowel, but when they operated they couldn't see much evidence of the tumour. The chemotherapy had done its job, but we knew the neuroendocrine cancer was incurable.

When she came out of hospital to recover at home, she wasn't quite right. She couldn't straighten her tongue, sometimes her words would be slurred and she had a pain in the back of her neck. We went back to the GP and they just attributed it to the operation. I didn't know otherwise, we just trusted what the doctor says. A very short time later, she got progressively worse and the GP told us go to hospital. I drove her, and she was just being sick in the back of the car. It was horrendous.

The cancer had spread to the bones in her head, which was causing her so much pain. She was admitted to hospital, and again I stayed with her. She had five cycles of radiotherapy.

When she was on the ward, the surgeon and his colleague came to see her. He was such a lovely guy, but he struggled to get the words out. There was a lot of long pauses. Lydia just said do everything you can. I asked to see them both privately. I don't normally ask to see them without Lydia as I don't think it’s fair, but it was clear there was something they couldn't say to her face.

It was very serious. On top of her two cancer diagnoses, she now had peritonitis. They asked me to make an impossible choice:

• Operate to remove the peritonitis, but they were sure she wouldn't survive the surgery.

• Provide her with masses of antibiotics to treat it, but take the chance the cancer would grow and get worse.

• Do nothing.

I knew that no treatment was not an option, but how on earth was I meant to make this decision by myself. I asked if I could consult with her father, but there was no time for that. I asked what they would do if it was their child, at first they refused to answer but one of them said if it was their relative, they would opt for the antibiotics, so that's what we did.

No parent should ever have to make that decision.

We told her the new treatment plan, and I went to get some of her favourite snacks from the M&S next door to the hospital. They put her on antibiotics and a few days later her oncologist came to see her. They broke the news to us that there wasn't any other treatment options. She asked to see me privately and Lydia was left with a nurse. I asked how long Lydia has left, and she said she wouldn't expect her to live longer than three weeks. I cried, and so did she.

I went back to see Lydia and she was amazing, so brave. She wasn't worried about herself, but for me and her dad. It's really difficult to know what to say and the best that I could come up with was, you can't see the future, and the past has gone, so we can just live for today. I told her that she wasn't going to die today and that seemed to comfort her, I didn't want her to be frightened.

They moved her to a really lovely room with big windows. She was so weak, she couldn't go to the loo by herself. The nurses were looking after really well, but she preferred if I did all her personal care.

Visitors would come and see her, my sister and brother. She loved that he came with his camera as she was studying professional photography at university, and he was a photographer. They couldn't comprehend that she was ill, as she didn't look it. The steroids make you look and feel better, it does a good job of hiding what's going on underneath. It's a good illusion.

It was Christmas Eve and I was just outside her room, she could hear me wrapping presents for her and the whole family. She said it was really comforting for her to know that I was just on the other side of the door. The next day the whole family piled in and opened presents. She said goodbyes to my sister and brother, she probably wouldn't see them again. When everyone left, she opened her stocking presents from me. It was a really special moment. She told me she loved me, and I was very fortunate to be able to tell that I loved her too. There was nothing left unsaid between us.

I didn't know whether Lydia was putting a brave face on, or whether she was truly accepting of her fate, so I asked the head of palliative care at the hospital to check in on her. She said afterwards to me that what you see is what you get. She's not frightened. Lydia and I never had a conversation about the end, there was no goodbye talk.

It was New Year's Eve, and again her dad and our three sons were in her room. You could see the London Eye, and we watched the fireworks together. This made her very happy.

Six days later on Friday 6 January 2012, two of my oldest friends came to visit Lydia. They've known her since she was a baby. I cried with them in the corridor – she had deteriorated so much, and I knew that weekend she was going to die. It was pure coincidence that her doctor came by at that moment, and I aired my concerns to him. He didn't anticipate that would happen but he was on call at the weekend, and that I could call him if anything were to happen.

On the Saturday evening, she couldn't breathe properly, they gave her a nebulizer to help with it. We tried some relaxation techniques. She imagined her happy place, which was on the beach with her puppy, that she got 18 months prior, running towards her. I told her to feel the sand in between her toes and the warmth of the sun on her skin. She held my hand, she didn't do that a lot, but she took comfort in it.

I sang her a lullaby. One I had sung to her as a baby and the one my mother had sung to me. We held hands a lot during this time and she told me she felt cosy, which was a great relief to hear because her breathing was deteriorating.

The next day the doctors did their rounds, and asked to see me outside. They explained that she would most likely die today and that I should call the family. I knew it was today. As the day progressed, she got worse. They tried to alleviate the pain but she was panicking. I asked for her doctor to come.

The last hour she was relatively peaceful. She was recalling that it was our wedding anniversary on the 9 January, and that it was coming up to one of her brother's birthdays. Her eyes were closed, she stopped talking but she could still hear us. At 3.56pm on Sunday 8 January 2012, she died.

The nurses were all in tears, even the sister who was tough as nails.

When you lose a child, you suddenly belong in a club that no one wants to be a member of. It's every parents' nightmare. Life turned upside down, everything I believed in I no longer did. It changes you, and you're never the same again.

She was so brave. We did our best, and we don't always say the right thing at the right time but she was the most certainly the bravest person I know.

It was her 23^rd birthday on the 8 November – she died exactly two months after. Six months later, my brother died of bowel cancer, I thought at 69 he was too young.

I would just urge young people to get a second opinion if they're worried and insist for further tests. Take your partner, a parent, or your best friend with you.

But we're leading change

Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.

What are we calling for?

• Improved clinical guidance and practice on bowel cancer in younger people
• Improved identification of people with genetic conditions and access to surveillance screening
• Improved information for younger people on bowel cancer symptoms.