Janet, United Kingdom shared by Dawn

Mum was young, 37, when she was first diagnosed with cancer, she had 5 children all of us under 18. I was the oldest and my little sister was 6, we were devastated when she told us, we had not had cancer in our family before, so we were scared and worried for our mum. Mum was so brave and so positive, she was adamant that she was not going to die, that she was going to beat cancer. On this occasion she did, unfortunately for mum, she had several other times where she had to fight like a trooper to beat cancer, she had three more occasions where she was told the cancer was back again and it was always before Christmas, she desperately tried to hide it from us as she didn't want to ruin Christmas, she had to have a mastectomy and a reconstruction which took her months to heal from, for the cancer to return in the same breast a few years later, the breast cancer was slowly spreading through her body to other organs and on her spine, she lived with it daily for 14 years, taking medication, visiting hospitals, blood tests, it was a lot and seemed to be her life for so long, before it finally took our beautiful courageous mum last year, she was 74 and still fought to the end to live her life.

Mum had a lot of time in and out of hospital, on various treatments, on different health programmes and wanted to help the medical world understand more about cancer, so she opted in to support with trials and underwent regular scans and tests to provide the NHS with data and knowledge. Sometimes it felt like mum was a guinea pig, and they forgot that she was human with family and feelings. When they offered her another trial last year, she refused, she was too tired to keep going back to be prodded and poked and it felt at that point she was forgotten about. She had a major operation in January 2024, they had found another tumour in her stomach, they had to do a stoma so she had a permanent bag to now get used to on top of all the drugs and her feeling terrible, she so desperately wanted to live but she knew deep down she wasn't getting better, and I feel at this point in her life she should have been offered more support and counselling, but no-one was there for her, we had no support from cancer nurses, she had no end of life care even though in January they knew there was nothing more they could do for her. She died feeling very scared, not wanting to go, we were all with her, but so traumatised, we definitely were not ready and had not been given any support from the medical profession to navigate this time.

My family are the best, we really pulled together, to look after mum and dad, to make sure she got to appointments, to sit by her bedside when she was in hospital. Without my family it would have been a lot harder, but don't get me wrong, it was hard! None of us understood how ill mum had become, she hid it so well, always smiling and chatty. My work were so supportive too, letting me dash off when mum was rushed in to hospital, giving me time to breath and to grieve when she passed.

Mum was a very proud private person, she didn't share everything she was told by the medical profession, I think now she was shielding us from the worst of it, when she was rushed in to hospital last January, that was really the only time we got involved with what was happening to her, we were called in as the consultant did not think that mum was going to recover and they put a DNR in place which was devastating for us all. It was really difficult to come to terms with the fact that she may not come home. It was a very worrying time and the doctors did give us the information they had, but nothing was left for us to decide. Thankfully mum was well enough to go home after a few weeks, she was weak and tired, and the doctors had already told us there was nothing more they could do for mum, the cancer had spread too far for them to perform any more operations. That was the only time we had a frank and honest conversation with the doctors. Mum was offered a course of chemo shortly after, it was a trial they were doing, they said it might extend her life. but she would probably lose her hair. She said no, this was the first time I saw mum look defeated. She continued having the scans and the blood tests but it was never good news. Mum didn't want to know how long she had got left so we never asked, we never talked about it, but we didn't expect it to be so quick. We weren't ready to let her go, but she was ready, although she was scared, she fought so hard to stay, always having a milestone to look towards, my nieces wedding being the last goal she aimed for, which she made.

Never give up hope, Mum lived with cancer for 37 years on and off, she was adamant she was not letting it beat her. Being so positive in herself and around the family was what drove us all forward. She was super human! We are so very disappointed that she did not receive the best end of life care, she deserved so much more from the healthcare system. As a family we did everything for her, to make her comfortable, to get her all the equipment she needed, but that was only because my niece and nephew are a nurse and a paramedic, they helped us navigate the system for these things. But we all agreed the system failed her in the last months of her life. Fight for the care your loved one deserves, ask them to be honest and upfront with information to allow you the time and space to make an informed choice for your family. We are not beating cancer!! It is still taking too many of our loved and cherished family. Please do more!