What it’s like to… be terminally ill with cancer

How does it feel to be terminally ill with cancer? We speak to 35-year-old Charley Ashton – a wife and mum-of-one – about her diagnosis, not giving up hope and immunotherapy – a possible cure for her rare form of cancer…

Charley Ashton, 35, lives in Hove, Sussex, with her wife Jessica and their 18-month-old daughter Aurelia. She has been diagnosed as terminally ill with cancer but believes there’s a treatment that can help her, though time is of the essence.

“In May 2015, I had a benign tumour removed from my stomach, I had IBS type symptoms. Then in October 2015, the symptoms came back. I had to see six different specialists before they found the cancer, just outside of my stomach. I wasn’t given a proper diagnosis, as no one in the world has ever seen my type of cancer. So it’s classed as an unknown primary.

Discovering I’m terminally ill…

They found the tumour in January 2016 and tried to operate and remove it but were unsuccessful. I was told it was terminal when I came round from the operation. I was really ill in hospital so I think I was a bit doped up on all the drugs, however I do remember it very clearly. I was shocked but calm, my family was with me and they were devastated. At that moment, I was the strong one. I was told I had a few weeks to live.

I’ve been on a rollercoster of emotions, I was really ill for a long time and have had lots of dark days, where I have just cried and cried. But I have a strong support network of friends and family and they have pulled me through, particular my wife Jess who has had to live this day in day out.

Friends and family have been amazing – so strong and never giving up. Yet we have new level of honesty, where it’s okay to be sad, scared, mad and more than anything – it’s okay to cry.

Charley is terminally ill with cancer - theearlyhour.com

My partner, Jess, has been through so much. Her and my parents were told on two occasions it would be unlikely I would make it through operations, and I’ve had really low times. Jess has remained positive throughout, refusing to take the doctor’s word. As such we are proving them wrong, I shouldn’t be here but a positive mental attitude is keeping me going and that comes from lots of love and support.

The doctors’ constant negativity takes away hope and without that hope it’s so easy to accept what they are saying and just give up. Their comments haven’t been in any way helpful.

Prior to becoming ill, I was scared about the idea of death/dying and to a certain extent I still am. But I have addressed these feelings and if and when it happens I am sure I will be fine with it. I do not dwell on negative feelings; I am here today and I will fight for as long as I can, being as positive and hopeful as possible. What upsets me the most, though, is leaving my little girl Aurelia behind.

A possible cure…

Immunotherapy is a new wonder drug, used to treat a range of mainstream cancers with great success rates. Unfortunately because my cancer is so rare it is not known if the treatment will work, as such the NHS won’t pay. This is my only hope, the chemotherapy I have had has now stopped working. It may save my life or may just give me longer, either way I’m determined to give it a go. Time spent with Aurelia, Jess, my friends and family is so important – the longer I can have the better.

I’ve been sick since coming out of hospital in February, and I have had six rounds of chemotherapy that have totally wiped me out. At the moment I’m feeling loads better and spend my time working on our campaign cure4charley and researching possible treatments. I also spend time with my family and friends, take my little girl to the park, feed her dinner, bath her etc. These things are priceless to me.

Hopes and dreams…

Short term, I want to try and enjoy every minute I have. Long term, I hope that science moves quickly and they find a cure. Apparently, 54% of people who die from cancer, die from a rare cancer – this has to change. I would love to go in to local politics and make a difference for people, my campaign has brought out so much love and support from total strangers I want to give something back.

To someone else receiving a similar diagnosis, I’d say: don’t give up, and don’t take one doctors word as gospel. We are all going to die at some point so live each moment and do what makes you happy.”

Please visit Charley’s website and fundraising page