Emilys cancer journey: fund treatment, save lives

Hi, my name is Emily. This is my story and how you can help: 

Last November (2022) our whole world was turned upside down when Emily received a shock diagnosis of stage 4 bowel cancer, spread to her liver (colorectal liver metastasis). After a 12 hour wait in A&E and discovery of "a mass" on her liver, this devastating news came as a complete shock. Emily had always been in good health and - so she thought - she had been under the care of healthcare professionals since symptoms began in 2019.

Tragically, the iron anaemia - which medics had been aware of for over 2 years - was never properly investigated, until Emily finally asked “but WHY am I iron anaemic?” and a locum GP broke ‘practice rules’ (despite NICE guidelines advising testing with her symptoms). They issued a FIT test, with off the scale results*. Severe abdominal pains - on Mothering Sunday, 9 months before diagnosis - were dismissed by A&E as "probably muscular" and a diagnosis of iron anaemia given. [* a Faecal Immunochemical Test looks for blood in a sample of your poo and can show abnormal bleeding].

Caught early, this type of cancer has a high survival rate (92% at stage 1) but prognosis significantly worsens at later stages (as low as 10% at stage 4), so acting as soon as symptoms appear or are reported is critical. Strong evidence exists of the link between iron anaemia, abdominal pains and colorectal cancer, yet medics often don't suspect or screen for bowel cancer in younger people (despite a rise in diagnosis of bowel cancer in under 50s in the UK and worldwide) or query blood loss in younger women (as they would in men and menopausal women). 

This is costing lives and needs to change. 

As we worked to get our minds around this harrowing news - and somehow keep life going for our young twins Ernie & Leo - we focused on getting Emily on treatment as soon as possible, starting on FOLFOX chemotherapy just before Christmas last year. Putting one foot in front of the other, Emily focused on getting through each step of the treatment plan - chemotherapy, liver then bowel operations, then more chemotherapy. 

The side effects were tolerable but increasingly tough. Despite staying hopeful for the new year, Emily underwent emergency surgery, after being blue lighted to hospital in the early hours in late January with a suspected bowel blockage. This turned out to be the 4cm tumour in her bowel, discovered by an earlier colonoscopy. After a long and painful recovery, away from her young sons for 3 weeks, a scan showed the cancer had progressed. So it was straight back onto chemotherapy as soon as possible (March).

After a second opinion brought more clarity to the confusion and lack of join up across the London NHS Trusts treating Emily, we discovered yet more bad news. The latest scan showed enlarged nodes, above and below the diaphragm. These had been lit up on the PET CT (radioactive) scan taken in December last year but Emily's oncologist had not seen these before. He broke the devastating news that "your treatment stays the same but your prognosis worsens - I have to go now”.

Emily continued on the chemotherapy, managing side effects and staying hopeful for good days or even good hours. While the dose had to be lowered to reduce the harsh impacts, Emily was determined to complete the 12 cycles and focused on the promised and much needed break from treatment with her family. Sadly, this was not to be.

A scan at 10 cycles revealed the chemotherapy was not working everywhere, so Emily would have to come off chemotherapy and go onto the next line of treatment. A targeted therapy, these drugs (Beacon) are specifically designed for those who sadly (like Emily and the late Dame Deborah James) have the aggressive BRAF mutation.

How you can help?

Due to Emily's late diagnosis, her cancer has spread and, as a result, systemic drug treatment is currently the best option. While we hope that these drugs will work, and continue to work for as long as possible, Emily and her family need hope that there is something else for when they do stop working. Since we know chemotherapy stopped working previously - and stops working more quickly when you have the BRAF mutation - we want to explore other options which help us stay hopeful.

Fortunately, clinical trials in other countries (USA and Europe) have shown drugs like Avastin (Bevacizumab) to be effective in treating people like Emily. Unfortunately, there are no planned clinical trials in the UK and these drugs are therefore not licensed and approved by NICE as an available treatment on the NHS. The treatment IS available, for those who can afford to pay, but the cost is approximately £2000 per cycle. There are also ‘liquid biopsies’, which can help oncologists better target available treatments, but which cost around £3000. Emily may also need to travel abroad to seek other treatment options. She is currently unable to work due to ill health and also has pain from multiple spinal fractures caused by (likely chemically induced) early onset osteoporosis. 

This GoFundMe account has been set up to help fund future treatment options for Emily. It is the also start of her plans to help raise awareness of issues which could help prevent this nightmare happening to others. Emily's actions have already led to a change in her GP practice on use of FIT tests. With your support, she is determined to gather the evidence and use her story to raise awareness and create change, particularly on the importance of iron/anaemia and early use of FIT tests.

We are determined to do absolutely everything we can to keep Emily alive for as long as possible - not least for the sake of her beautiful 5 year old sons, Ernie and Leo. We know that breakthroughs in treatment options are being made all the time, and want to push for more clinical trials in this country to help Emily and others to receive the treatment they need on the NHS.

Emily has shown enormous courage and bravery and has somehow managed to find the strength to keep going - despite everything which has been and continues to be relentlessly thrown at her. She now needs your help to give her and her family hope and fund treatments not otherwise available to her and complimentary therapies to help manage pain and side effects.

If you can afford to donate, please help support Emily by giving what you can via this page. If you can't afford to support us, please consider fundraising for us (sponsored swim/walk/run, hair or beard shave, cake sale - you name it!) and/or by sharing this link with others.

Thank you with all our hearts

Emily, Glenn, Ernie & Leo XxXx