Neepy’s story: “We cried so much holding her tight to us till the very end”

Neepy, who was first diagnosed with Ewing’s Sarcoma in May 2018, sadly passed away last year at 26 after her family were told, after months of treatment, that her cancer had returned and she only had a few months to live. 

Neepy, then 23, was first admitted to Colchester General Hospital on 26th April 2018 where the next day, her and her Mum Ram, were told she had cancer.  

Ram says: “We were asked to sit down and get comfortable, Neepy and I were holding hands as we walked in. All I said to my Neepy was whatever we get told we’ll face it together and she was not alone. Our hearts were beating fast and are hands felt sweaty, we both felt like it we just wanted to run away at the time! Then the doctor entered , it was complete silence in the room & the room suddenly felt really cold…then suddenly the doctor started saying there was no better way to tell us but Neepy had Cancer.” 

At this point, they were unsure on the specific diagnosis or which stage Neepy was but, after lots of tests and a biopsy, Neepy was later diagnosed with Ewing’s Sarcoma. She started chemotherapy treatment on 5th May 2018 and they stayed at UCLH (University College London Hospital) for a full six weeks. She then went on to have 12 months of treatment, every two weeks. 

Ram said: “[It was the] first time in my life as a mother I had no control in making her better or taking this illness away from her or even being able to swap places with her. All I concentrated on was getting Neepy better, nothing else mattered.” 

At the start of January 2019, Neepy had routine tests, which they were shocked showed that she had secondary lung cancer. This meant she had to have further chemotherapy and radiotherapy. Then, after over a year, Neepy finished treatment in June 2019 and went home. Her family had been told that Neepy would never be in remission but she was stable. They also said she had between 6-9 months before the cancer may return. 

Ram and her partner were engaged – so, with this news, Neepy asked to bring their wedding forward so she would be able to celebrate with them. They celebrated on 27th August 2019 and Neepy was so happy to be there for the big day. 

Coming into 2020, Neepy was looking ahead thinking about booking holidays and making plans. However, after a routine scan in May 2020, she was told the cancer had returned and she had a few months to live. 

“We both looked at each other in disbelief when we were told the news . I was in total shock at the time but Neepy was once again so brave but had tears in her eyes . We both wanted to cry but we also needed to ask further questions like what treatment is available or what treatment she could have.” 

Neepy was told she could have chemotherapy but due to the pandemic, she was unable to go on a clinical trial. They were told the chemotherapy would not be able to cure her condition, but would give her a few extra months.   

Later that month, Neepy suffered with severe headaches. Ram recalls: “out of the blue she was having a lovely day enjoying the sun in the garden when she came running in screaming that her head was exploding and in tremendous pain which lead to her vomiting, feeling scared, weak, couldn’t stand or sit up, she had blurred vision.” They called 111 and they were advised to call an ambulance. 

After an X-ray and scans, they were told that Neepy had a brain tumour and she was now in palliative care, with only a couple of weeks left to live. After being told that no surgery could help with the bleed on her brain and could lead to complications, Neepy’s family made the tough decision not to operate and to bring her home for her final weeks. 

Ram said: “She told us she just wanted to be back home in her own bed and bedroom and the health care professional help us do exactly that . With a very heavy heart we decided to bring her home where she desperately wanted to be and have her last day’s around her dear family and friends.” 

Doctors had told the family she had two weeks to live, but Neepy stayed with them for another six weeks and in that time they made special memories as a family. Early in the morning of the 12th July, Neepy sadly died at home with her family around her.  

Ram said: “We cried so much holding her tight to us till the very end. I felt like I couldn’t breath and was suffocating. My heart was broken and felt like a sharp knife had just been stabbed in my chest. I just wished I died there and then with her.”