Holly's Story

Holly, just 24, was studying Graphic Design at Brighton University when she began to suffer from bloating and intestinal discomfort. Her doctor referred to a specialist, who diagnosed Irritable Bowel Syndrome (IBS) and prescribed Holly a laxative.

Holly’s bloating and discomfort continued for several years, despite her taking the laxative, forcing her to constantly change her day-to-day plans.

“I kept thinking to myself, if this is what IBS is like then I don’t know how people cope,” she said.

Despite worsening symptoms and several more trips to the doctor, Holly was still given the same diagnosis.

“I felt really frustrated, as the doctors kept telling me to eat more fibrous foods, whilst upping my intake of the laxative.”

After graduating, Holly and her boyfriend moved back to Fleet to live with her parents, so that they could save enough money to afford their own house. Holly worked as an intern at a couple of design agencies, before being offered a full-time position with a London-based organisation.

“I was over the moon when I was offered the job – I couldn’t wait to start as a full time employee,” she said.

Her illness continued, however, and her symptoms started to become much more aggressive.

“I remember sitting on the toilet for hours in excruciating pain, passing a significant amount of blood. I knew then that something was seriously wrong,” she said.

Holly was immediately referred to Basingstoke Hospital, where she was seen by a colorectal surgeon. She underwent a colonoscopy and the following day received some shocking news. Doctors had found polyps on her colon, along with what they believed to be a non-cancerous growth, which would turn cancerous if not removed.

“The thought of having cancer never crossed my mind,” Holly confessed. “I tried to return to work but I was too numb to think about anything else, so I had to leave.”

Shortly after the colonoscopy, Holly had a CT scan, which then prompted doctors to perform an MRI scan on her liver. The MRI showed secondary lesions, which had spread from the tumour in her bowel – revealing that the primary bowel tumour was in fact already cancerous.

“When they told me, I was in complete shock. One minute I had IBS and the next I had cancer. All I kept thinking was this is it.”

Just a week after her diagnosis, Holly was referred to Phyllis Tuckwell. Alison, one of the Clinical Nurse Specialists, visited her at home to establish how Phyllis Tuckwell could help her and her family.

“When I first heard the word ‘hospice’, I thought I was a gonner,” says Holly. “It didn’t enter my mind that someone of my age would need Hospice Care. But I could not have been more wrong.”

Holly started an intensive course of chemotherapy which had a number of unbearable side effects such as tingly fingers, locked joints and extreme exhaustion. Bridget, one of Phyllis Tuckwell’s Complementary Therapists, visited her at home to help her find alternative ways of coping with the pain she was in.

“I was very sceptical about the benefits of complementary therapy,” said Holly. “But now I cannot imagine my life without some of the alternative therapies Bridget gave me. She is amazing and is like a friend to me.”

During her chemotherapy treatment, Holly felt a sense of horror, not knowing what impact her treatment was having on her body or the cancer. Four months later, more CT and MRI scans confirmed the cancer had shrunk by 50%, but that there were around 25 cancerous lesions on her liver. Surgeons were unsure whether they would be able to remove them, as the operation they would be so complex.

It was decided that the operation would go ahead and 70% of Holly’s liver was removed. Holly remained in Intensive Care for five days and spent the next five weeks in hospital. During these weeks she also had emergency surgery, as an infection had developed in her pelvis two weeks after her operation. Holly’s body struggled to cope with the amount of major surgery which she had undergone. The removal of so much of her liver had led to further complications, including kidney failure, which meant she also required dialysis.

“Words can’t describe the amount of pain I was in,” she said. “My surgeon had never operated on someone with as many secondary lesions as me, so I knew I was lucky to be alive. It was a very traumatic time for my family, particularly my younger brother. But Phyllis Tuckwell’s Counsellors were incredible, and they continue to help my brother cope with his fears and anxieties.”

“Amber, one of the Counsellors at Phyllis Tuckwell, also helped me immensely,” Holly continued. “She went out of her way to visit me in hospital and taught me a range of different coping mechanisms to help me ‘switch off’, as well as helping me to look towards the future.”

During her time in hospital, Holly lost two stone and suffered from severe back pain. Sarah, one of Phyllis Tuckwell’s Physiotherapists, visited her at home to help her gain strength. Holly also saw Occupational Therapist, Lisi, who helped her get back into a sleeping pattern.

When Holly finally left hospital, she was visited at home by district nurses from her GP surgery, who helped clean and dress her wounds. Kay, a Clinical Nurse Specialist from Phyllis Tuckwell was also on hand to help Holly manage her medication.

Six weeks after leaving hospital, Holly was still losing weight. The cancer was still present in her bowel, she was still in a considerable amount of pain, and she was becoming increasingly depressed. She was admitted to hospital and underwent an operation to remove her entire colon. After leaving hospital, Holly was visited by Bridget and Amber, who taught her some relaxation techniques, and Karen, a Benefits & Entitlements Advisor at Phyllis Tuckwell, who helped her gain access to the benefits she was entitled to.

“I am gradually starting to build up my strength thanks to the help from both my wonderful family and Phyllis Tuckwell,” says Holly. “Phyllis Tuckwell has been pivotal in helping me cope and I don’t know what we would have done without it. I would also like to pay tribute to my mum who has been an absolute rock to me.”

“I would urge anyone who has symptoms of IBS to visit their GP,” says Holly. “Words can’t describe the pain I have experienced over the past year but I am so grateful to everyone who has helped me, especially those at Phyllis Tuckwell.”

Sadly Holly died at the Hospice in August 2012.