Bowel cancer affects more than 2,100 people under 50 every year
Emily, 33, originally from Godalming, Surrey
Living in West London in 2010 and newly married, Emily was fit and healthy, but had noticed blood in her poo for a few weeks so went to her doctor. Her GP referred her for tests, and she was sent to a surgeon about six weeks later who did a sigmoidoscopy. He found something, but was unsure what it was. After more tests the same day, Emily was told the next day that she had a cancerous tumour. This came as a huge shock, especially since she was newly pregnant at the time.
Unfortunately many factors were working against the couple to be able to keep the baby and thus Emily had a termination before major surgery and chemotherapy was planned which was naturally very upsetting.
Following this, Emily had ‘fast track’ IVF to preserve as many embryos as possible then was quickly booked in for surgery. In total it was 4 weeks from diagnosis to surgery. Emily’s background was working in the NHS which she felt gave her more understanding of the different processes and departments she went through, and yet felt it all happened so quickly there was barely enough time to grasp the severity of it all.
The hospital team told Emily that as well as the tumour, her bowel was lined with polyps and that she had a genetic condition called Familial Adenomatous Polyposis (FAP), despite no-one in her close or extended family having a history of cancer or bowel disease. To prevent the polyps from becoming worse, the hospital team removed the whole of Emily’s large bowel along with the tumour, gave her a temporary ileostomy, then she started four months of chemotherapy. She found this the worst part, losing three and a half stone in weight. “The irony is that I wasn’t ill before,“ she says.
Emily had allergic reactions to a number of the drugs she was given and was admitted into A&E several times throughout chemotherapy. She stopped chemotherapy when it became clear to her medical team that she was getting more ill, ending up in a wheelchair due to malnutrition. She was told to rest over the summer of 2011 and put some of the weight back on to prepare for the reversal of the ileostomy, which she had in October 2011.
“While I came across some fantastic members of the hospital team, I always wanted more information, I wanted clinicians to treat me like a peer rather than a patient. It was a battle to try and understand my case and get clear explanations.”
“Even in remission the experience hasn’t ended, some days feel almost normal again but it is often with me – the trauma we went through and how to get back on my feet again. Of course I’m happy it is over, but that doesn’t stop you from feeling angry or upset that all of it happened in the first place”.
“The experience has made me want to be involved in campaigns which help to raise the profile of young adults with cancer, due to the range of life experiences they are forced to re-think when it happens.”
“I felt there were many issues for young people with bowel cancer, such as fertility, paying the mortgage, working. Then pressure to achieve something post-cancer or to be grateful and happy you are alive – of course I am, and many days I laugh and get on with things, but it has changed my view of the world for sure”
Physically Emily feels that she is lucky - the operation was successful, she goes running now, and enjoys many foods she thought she might not be able to. Emotionally she feels the experience is one which will take a while to ‘settle down’. She has since moved out to the Surrey countryside from London, as well as changing jobs. Having a year and a half off work made her reassess her former position and now feels much happier working for a charity. She is also involved in a number of forthcoming awareness campaigns around young adults and cancer.
To bring these issues surrounding younger bowel cancer patients like Emily to the Government’s attention, Bowel Cancer UK have launched a petition.
The e-petition calls on the government to implement key recommendations outlined in their ‘Never Too Young’ report.
Every year, more than 2,100 people under 50 are diagnosed with the condition, many of who express frustration at the difficulty and delays in getting a diagnosis.
Deborah Alsina, CEO of Bowel Cancer UK commented, “We have had an overwhelming response to our campaign to ensure that younger bowel cancer patients are diagnosed quickly and receive the support they need wherever they live in the UK. The difficulties they face are serious, yet solvable. We need a commitment to action from the government to implement real change. We have launched this e-petition to push for action on implementing the recommendations from our report, which we believe will enable us to make real progress in saving lives from bowel cancer.”
Bowel Cancer UK is aiming for 5,000 people to support their call for these recommendations to be implemented through the e-petition, which will be presented to the government.
http://www.change.org/en-GB/petitions/prime-minister-david-cameron-save-lives-of-younger-bowel-cancer-patients
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