The ‘Do You C Us?’ campaign is raising awareness of the challenges facing people living with rare and less common cancers.
Thank you to the people living with rare and less common cancers who shared their stories with us to support this campaign. In their own words, people have told us about the issues they’ve faced. Hear their stories here:
I went to my GP thinking I might have a heart problem. I underwent several investigations and these all came back fine, no issues. After several more tests and investigations, I received the devastating news that I had a rare form of cancer (Epithelioid Malignant Mesothelioma). As you can imagine my world was shattered.
I was diagnosed with secondary liver cancer. I hadn’t taken anyone with me to the appointment and I don’t remember the drive home. Telling my wife and children was quite difficult, especially as at that time I did not know how serious my condition was.
I first had strange blood test results in my early twenties back in the 1980s but it wasn’t until many years later that my GP started to investigate my continuing strange results. It took them two years of prodding and poking me before they diagnosed my condition. MDS, a form of blood cancer.
The doctors looked at me, a young woman, and never suspected this was what I had. In some ways, it made the diagnosis worse because they kept telling me it was nothing to worry about.
After I was told about the breast cancer I received care and compassion right from my diagnosis and support all the way along. With the blood cancer diagnosis it was so different. I was told that my blood tests confirmed I had PV. That was it, no explanation to what it was or how it would affect my life.
I was diagnosed with multiple myeloma in 2015. I am lucky to have had exemplary care throughout my treatment. I am fortunate to have been involved in two trials and am currently undergoing a course of immunotherapy.
In early January 2020 I saw my GP to discuss my symptoms, which now included bloating. My GP was unconcerned but referred me immediately to the surgical team at the local hospital for the bloating.
Short term side effects of treatment were tough, for example, nausea, loss of appetite and horrific diarrhoea but they disappeared soon after completion of treatment; however the long term effects are in a league of their own and for me have been very life changing.
My wife Monica was finally diagnosed with Cholangiocarcinoma after nearly 18 months of tests and procedures to try and identify what was wrong with her. Unfortunately, this cancer was discovered too late for her
I first noticed symptoms whilst singing karaoke with a group of friends and I noticed I couldn’t hit the high notes like I used to.
The general lack of knowledge about MPNs means some medical professionals dismiss even common MPN symptoms that can make our daily lives difficult. I am painfully aware that some people don't have anyone that really lets them feel heard.