‘Jelly belly’ music video spreads word

March 26 2015

IT'S a disease that affects one in a million people. Now, survivor of the rare cancer, Jenny Ramage, is wanting to raise awareness – and she's doing so by creating a music video, which she hopes will benefit patients across the globe.

IT'S a disease that affects one in a million people. Now, survivor of the rare cancer, Jenny Ramage, is wanting to raise awareness – and she's doing so by creating a music video, which she hopes will benefit patients across the globe.

The video, which only launched on March 21, has already received worldwide recognition and had acquired almost two-thousand views on YouTube at the time Bishospton Voice went to print.

The local music producer says that she has been heartened by the coverage of her story, and has already started receiving messages from people, saying that the video has lifted their spirits and is helping them cope with their diagnosis.

Just under three years ago, Jenny, 35, from Bishopston, was diagnosed with Pseudomyxoma Peritonei (PMP) - a disease often originating in the appendix, which eventually grows and suffocates vital organs. If the condition, sometimes dubbed
‘jelly belly’ is left untreated, the outcome is fatal.

She underwent a nine-hour operation – which has been referred to by doctors as the “Mother of all Surgeries” – to remove the tumour, which had spread from her appendix across her entire abdomen.

Jenny had 10 organs removed and now bears a 14-inch scar from her diaphragm to her pubic bone.

For a year, Jenny was experiencing unusual stabbing pains in her stomach, bloating, constipation, and irregular periods. She had been to the doctors on numerous occasions, but they failed to pick up on her symptoms.

It wasn't until a doctor happened to glance at a scan of her insides, that an abnormality was detected. Jenny says that other doctors had failed to identify the problem, but fortunately this particular doctor had seen the problem before.

“I remember being given the news, and first of all feeling elated,” Jenny said. “At last, someone had found what was wrong with me. But as soon as they started mentioning 'cancer', I went from this high into being really shaky and crying. I just went into shock.

“They didn't realise how bad it was until I underwent the surgery … it was everywhere. Doctors said the tumour could have been growing for years. It was such a lengthy ordeal – I knew there was something wrong.”

Jenny had numerous organs removed including her right colon, spleen, appendix, omentum, peritoneum, gall bladder, ovaries, umbilicus, part of her liver and part of her diaphragm. This was followed by a hot chemo ‘wash’ to remove all traces of the tumour.

“Considering how much I had taken out, it's amazing what you can live without,” she added. “I can do what I want, eat and drink what I want – the only thing, is that I can't have kids the normal way, which is sad.”

However, Jenny still has a chance to have children, as after her diagnosis, she underwent a procedure to have her eggs frozen.

Now that Jenny is fully recovered and leading a fit and healthy lifestyle, she has connected with other survivors, and their friends and families, from across the world, and has brought them all together in a fun music video to raise awareness of PMP.

She has recorded her own adaptation of Billy Joel's classic, ‘We Didn’t Start The Fire’, where the lyrics have been updated to cover major events and trends since the singer released his 1989 version. It took Jenny four months to create, with help from friends.

She says that the song juxtaposes well-known events of the last 25 years, with a disease that very few people have heard about.

She managed to track down those who had been diagnosed with the disease via the charity Pseudomyxoma Survivor's Facebook page. Jenny floated the idea of her video, to which she received an overwhelming response.

The video includes people from across the world, including the US, France, India, Canada, Australia, New Zealand and Mauritius, as well as within the UK. Most of the people in the video are friends and family members of patients and other supporters. Some are survivors of the cancer, while others have been given a terminal diagnosis.

Also making an appearance in the video is Audrey Hepburn's son, Sean. The Hollywood star lost her battle to PMP in 1993. Jenny says that if there was more awareness about the disease back then, she could have survived. Audrey's son is now the patron for Pseudomyxoma Survivor.

“Being diagnosed with a rare disease like PMP can be a very lonely and isolating experience, and I hope that my video can change that,” Jenny explained. “Hopefully anyone with a PMP diagnosis in the future will, when searching for info online, find that video, and take away from it the message that they can survive this thing and that there is help out there. The more people can become aware about PMP, the more lives can be saved.”

She added: “Having been through such a serious and life-changing disease – and staring death in the face – it's made me appreciate life so much more. I have much more of a 'can do' attitude – if you can survive that then you can do almost anything. I don't sweat the small stuff anymore.”

Jenny is calling on Bishopston Voice readers to help spread her video, which can be found at bit.ly/1OmkZpW, far and wide. Visit her Facebook page, PMP One in a Million and follow the hashtag #PMPoneinamillion.

Jenny Ramage