Tess Grace, Cornwall

My daughter Amelia (Millie) Rose Grace’s short ten month journey with bowel cancer.

I would like to tell you about my daughter’s journey with bowel cancer. It lasted just ten months and she sadly passed away on 20 October 2021 aged just 24 in the Marie Curie Hospice in Woolton, Liverpool.

Many young adults just like and including my Millie present at their GP surgery with bowel cancer symptoms, but because they are so young, they are not tested for it and it is often too late then. Millie and I heard this from several medical professionals during her short journey.  ‘It’s rare in somebody your age’ or ‘you’re too young to have bowel cancer.’

Bowel cancer is an extremely aggressive and cruel illness, which if caught early enough can be treated successfully. Unfortunately, by the time Mille was diagnosed, it was advanced stage 4 bowel cancer, meaning cancer cells have broken away from the primary tumour and formed in other parts of the body.

As an adult, Millie had inconsistently experienced blood in her stools. She had attended at her GP on occasions and had blood tests and stool samples completed. I don’t know what exactly they tested for but on one occasion she was seen by a GP who told her that one of the tests she might need was a ‘finger up her bum’. This terrified Millie and unsurprisingly put her off returning to the GP for a time. She did return though and further tests were conducted, but Millie was still never tested for or given a diagnosis of bowel cancer.

Throughout 2019 and 2020, Millie began to get increased pain in her abdomen area. She was due to have a routine, unrelated, operation on her ovaries / fallopian tubes in January 2020 however, this was postponed due to COVID.

The operation eventually took place in December 2020, however prior to this and right throughout 2020, Millie began to get increased pain in her abdomen area, her stomach was swollen, she could feel lumps in her stomach, she wasn’t eating, she was tired and had again experienced blood in her stools. She had again been to her GP, various tests were conducted and at the time of her diagnosis she was awaiting a colonoscopy. She was still not tested for bowel cancer, despite presenting with most of the symptoms of the disease.

It was during this operation that the surgeon took a biopsy of something he had found. Millie was discharged from hospital but returned several days later feeling unwell. It was then she was told a biopsy had been taken and the results were now back and she had cancer.

On 23 December 2020 Millie and I attended an appointment at Aintree Hospital where we were informed Millie had stage 4 bowel cancer, which had spread to her liver and ovaries. The consultant told Millie her diagnosis whilst in the same breath said ‘It is rare in somebody your age’ Millie asked if she could die and was told ‘it is a possibility, yes’.

In January 2021, when Millie’s chemotherapy should have started, she became extremely unwell, needed a blood transfusion and emergency lifesaving surgery. It transpired the tumour was 18cm long in her colon and was causing a blockage which could have killed her, therefore she had to have a stoma bag fitted to save her life. Millie then went on to have 12 rounds of chemotherapy. 

In March 2021 a scan showed Millie had a really good response to her treatment and some of her tumours had shrunk.

During her treatment, Millie was positive and happy, she ensured she looked and felt her best, continuing to get her brows, nails and lashes done and with a full face of makeup even when sitting in the hospital all day for chemotherapy.  When she lost her hair and wore a wig, she would curl it, wear scarves and headbands and continued to be happy, positive, brave and always thought of others before herself. She made friends with others going through cancer and would regularly check in on them and buy them gifts, even when going through her own treatment. She would often say ‘oh, there’s kids and others worse off than me’.

Millie wanted other young people to be aware that bowel cancer can happen to anybody at any age, not just the over 50’s.  Millie wants adults her age, to be aware of the symptoms, go to their GP and be assertive in insisting they are screened for bowel cancer, not to be fobbed off by continually getting told ‘It’s rare in somebody your age’. She wanted GP’s to be aware of bowel cancer symptoms so they can try and stop it before it’s too late. She wanted the stigma that bowel cancer usually happens to the over 50’s to disappear.

After the 12 rounds of chemotherapy, Millie rang the bell at the end of July 2021 and could have a break from chemotherapy to ‘enjoy her summer’ with a view to chemotherapy starting again in October 2021. Me, Millie, her sister Hope and family had a night out in town to celebrate her chemotherapy break. Just two to three weeks later, Millie began experiencing pain in various places, she was so strong, and brave and would often minimise her pain.  She was determined to carry on as before her diagnosis and up until September she did.

She had another scan in September which sadly showed the tumours that had previously shrunk had now regrown, some larger and some now in other parts of her body. Thankfully Millie didn’t really take all this information in during the results appointment and always had hope that she would get better.

Millie’s pain became worse until she was admitted to Marie Curie hospice for pain management on 27 September 2021, this was after lots of persuasion, and encouragement and reassurance that a hospice isn’t just for people who are dying, lots go in for pain management.

The hospice staff were amazing. It made such a difference that they let us bring things in for Millie’s room like pink bedding, lights and diffusers. I stayed every night and Hope also stayed some nights, so we had girlie film and pamper nights. Just days before Millie passed away, the staff arranged a beautician to come in and she did Millie’s nails, eyebrows and lashes, which made Millie feel happy. This was really important to us.

When Millie was in the hospice, the staff talk about the family at handover as well as the patient. This meant that if I had something on my mind and I told a member of staff, they’d share it with the team. This was so helpful as I didn’t have to keep repeating what was going on. It was really important to me, knowing that the staff knew how I was feeling without me having to tell them again.

Sadly, Millie deteriorated quickly, due to the aggressiveness of her cancer she sadly passed away on 20 October 2021. This was just ten months after her initial diagnosis and three and half weeks after being admitted to Marie Curie. Millie passed away in my arms, with the TV playing ‘Desperate Housewives’ in the background: it was calm, peaceful and as lovely as it could be. One of the nurses stayed in the room with me, to reassure me.

As Millie is no longer here, it is my job to take over where she left off. I want to continue raising awareness of bowel cancer in our young adults and for GPs and medical professionals to access training and education to show that it is not an older cancer and they shouldn’t be dismissive when young adults display symptoms.

It is my aim to ensure our young adults have easy access to preventative information in places they will see it easily including social media, festivals, universities, colleges, nightclubs, gyms etc. I have created an Instagram page and a hashtag, both called  #stopitb4itstarts.

Millie and I shared her journey through our social media and we received and I continue to receive messages from people asking about Millie's symptoms as they have symptoms and because of Millie’s honesty, they had felt brave enough to go to their GP.

Millie regularly said she felt safe and happy in the Marie Curie Hospice. For a mum watching her 24 year old daughter deteriorate daily is devastating and traumatic, but to know that Millie felt safe, calm, loved and happy in there, speaks volumes about the staff and the environment. I wouldn’t have wanted her to be anywhere else.

We have begun raising money for Marie Curie in Woolton so that other patients and their loved ones can receive the same amazing care that Millie did. Since Millie’s diagnosis, we have raised nearly £3,000 for Bowel Cancer UK and since Millie passed away in October, we have raised over £7,000 in her memory.  On 9 May this year we were able to pay for a full day of care at Marie Curie which costs £6,778.  We are now continuing to raise money for further days.

I’m in the process of creating a new campaign called #stopitb4itstarts. I’m creating posters and a video clip which I want to take to universities, colleges, festivals and so on, targeting the 17-25 age group to inform them of bowel cancer & Millie’s short journey.

Find Tess’s campaign at: #StopItb4ItStarts