Forty years ago the doctor might not have named it, twenty years ago, family whispered it, today people not only dare to say the C-word, they are blogging, tweeting and sharing their experience of cancer.
Laura Moses, a bubbly and wonderfully warm 27 year old teacher, has been blogging about her fight with "Cyril", her nickname for the cancer on her ovary, since she was diagnosed just over three weeks ago.
"I was so shocked , and a blog felt like a way I could express all those mixed up feelings so I didn't have to bottle it up," she says. "It is liberating, but I also wanted to make young women aware that ovarian cancer can happen. I've even found one girl who is sixteen. It's rare but it can happen."
Laura has the BRAC1 gene. This is more common in Jewish women, (particularly Ashkenazi women, although she is Sephardi) and results in a greatly increased risk of breast and ovarian cancer so she was already being monitored for breast lumps.
When she had stomach cramps so severe it was impossible to drive, she called her GP. She could only get a telephone appointment, and blood tests indicated a bowel problem so she was referred to a gastroentrologist. Facing a three month wait for NHS treatment, her symptoms worsened, and she went to A&E where she was told she was constipated and given laxatives. Her worried father insisted she saw a private gastroentrologist who agreed with the constipation diagnosis and gave her still more laxatives. It took another trip to A&E, more blood tests and a referral to the Royal Marsden for the constipation to be correctly identified as fluid, and the growth on her ovary discovered.
Laura's blog, Finding Cyril is searingly honest, painful and inspirational. She photographs her chemotherapy sessions and the girlie pamper pack made by her sisters, the traffic jam that symbolises her frustration at her life being put on hold and funny messages from friends.
For Laura, blogging has many benefits. Many women have written to her telling her of their fight to get a diagnosis, others offer support. "It has surrounded me with love and positive vibe," she says. "It is hard, but at least my symptoms have been picked up and if I can get other young women out there to take these symptoms seriously, that matters - particularly those who carry the BRAC1 gene.
Karen Delin, 51 isn't blogging, but she is an active member of a Facebook support group which she believes may have saved her life.
Ten years ago, she decided to have a routine gynaecological procedure shortly before her daughter's batmitzvah, so she would be fit for the big day. Her consultant discovered a melon-sized sarcoma, a rare cancer. He told her not to look it up because the little information available would scare her.
"He was right," she says. "It was frightening. I was a cancer nurse with a cancer I knew little about."
Ten people a day are diagnosed with sarcoma, and the charity Sarcoma UK is is running an awareness week starting on Monday. It is most common on the arms, legs or torso but can occur in internal organs. If the lump is the size of a golf ball when diagnosed the chances of recovery are good. However, because so few GPs and patients know about it, most people are diagnosed when the lump is considerably bigger.
Karen agonised over whether to tell her children, Emma, then 12 and Jonathan 10, deciding to explain after Emma's batmitzvah.
"It was this weird situation where we were telling our friends and making them promise to keep it secret. We wanted our daughter to have her day, but I had to tell the children at one point when I had bad news."
She started educating herself about sarcoma, looking online in the small hours. She found a sarcoma email support group in the US and learned that patients do better when treated at a sarcoma specialist centre. She also heard about research suggesting some gynaecological sarcomas were receptive to hormone inhibitors. She urged her consultant to use them alongside her radiotherapy and believes it has contributed to her recovery.
She also feels the group, which moved from emails to Facebook, was psychologically vital. "Cancer can be very lonely and when you have a rare cancer, there are even fewer people who understand. But I was connecting with other people who eased that." She met a British woman online who told her about a fledgling UK charity and through them she started a group which is now on Facebook and became a trustee of Sarcoma UK.
For Karen, the downside was that she spent hours obsessively trawling posts to the point where her husband was "less than happy." But he was hugely supportive when she was offered the post of trustee.
Three years later, to her immense relief, Karen was declared cancer-free. Then tragedy struck. Just after celebrating their son's barmitzvah, her husband died of a heart attack. However, Karen has carried on with Sarcoma UK because she feels so passionately about it. "We can give people the information they need to get better treatment and encourage awareness amongst doctors. It is so rewarding to watch the charity develop."
Research from Health Psychology and other journals shows that the stigma of cancer has decreased as survival rates have increased. Lisa Steele, Chief Executive of Chai Cancer Care, which offers expert support to Jewish community members affected by cancer, says that while there is greater openness: "Some people will want to be more private. There is no right or wrong. It is what is comfortable." She adds that Chai can provide a safe, confidential space to talk whether in person or via Skype for sufferers and family members.
Lisa also sounds a note of caution for people with cancer who read cancer blogs. "Your journey may not be the same as theirs. Treatments are individualised and even if you have two people with the same cancer having chemotherapy on the same day their reactions may differ."
She adds that the use of social media to talk about cancer is very much a generational one. Certainly, both Laura, and Alex Samuels, 26 who had non Hodgkins lymphoma four years ago and blogged his way through his treatment, are the Twitter generation. But Alex feels that the blog actually helped him talk less about the illness.
"Everyone asks you how you are all the time and this way I could just point them to the blog. For me it was a way to talk about what I was going through without having to talk about it. Looking back, I have no regrets about it. I'd certainly say that if anyone wants to do it, they should give it a go."
www.findingcyril.com
www.chaicancercare.org
www.sarcoma.org.uk
