The Christie Charity
Press release posted 15 March 2024
Clinical nurse specialists are an essential part of the team caring for patients at Manchester’s internationally acclaimed cancer centre, The Christie.
Nurses such as Sophie Maycock often form unique and meaningful connections with patients like Libby Holden.
To showcase the importance of this pivotal role and the impact cancer CNSs have, Libby, who is living with incurable ovarian cancer, shares her story for National Cancer CNS Day (15 March).
Libby truly values her partnership with her clinical nurse specialist, and Sophie's passion and professionalism for the role shine through.
The patient – Libby Holden
Libby, age 66, is a retired garden designer from a village near Crewe. She was first diagnosed with ovarian cancer in October 2013.
“Unknowingly, I had been having classic symptoms for quite a long time,” said Libby. “A swollen abdomen, needing to wee more frequently and tiredness, but initially no pain. Later, I developed severe pain in my lower right abdomen, but the pain went away; then, a few months later, after yoga, I got the pain again, so I decided to see my GP.
“Like far too many women, I was unaware of the symptoms of ovarian cancer, which often leads to a late diagnosis when the cancer has spread and is incurable.
“To save lives in the UK, we need far more symptom awareness of ovarian cancer among women and health professionals. Survival beyond 5 years drops from 95% if diagnosed at Stage 1 to only 15% when diagnosed at Stage 4.”
Libby’s GP sent her for blood tests and an ultrasound; she was then referred to The Royal Stoke Hospital for major abdominal surgery followed by chemotherapy. Her cancer returned in 2017, leading to further chemotherapy.
By 2018, Libby felt something wasn’t right and sought a second opinion from Professor Gordon Jayson at The Christie. “He had my tissue samples retested, which showed it was a much rarer form of ovarian cancer, Low-Grade Serous, which is more resistant to chemotherapy, making it harder to treat.
“The diagnosis from The Christie was crucial for deciding the best treatment options. Further chemotherapy stabilised things, and I was able to have a maintenance drug called Avastin (bevacizumab), which kept the disease at bay for the next three years.
“Sadly, I had to come off Avastin as it was affecting my kidneys too severely. Unfortunately, my cancer started to progress again, spreading to the surfaces of my liver, upper abdomen, diaphragm and several places on my bowel, which is affecting its function quite badly,” says Libby.
“I am currently on hormone-blocking tablets, but then there is no further treatment available, only palliative care, which is very hard to accept.”
Libby was referred to clinical nurse specialist Sophie Maycock for symptom support and pain control.
“Sophie has a gentle, caring and friendly manner that put me at ease from the outset,” said Libby. “She is an excellent listener, very intuitive and empathetic. She is also extremely proactive and thorough – nothing slips through her net. We speak on the phone every fortnight or meet face-to-face when possible. We are a team, and I couldn’t be more grateful to have her on my side.
“Living with advanced cancer is a rollercoaster; sometimes I really struggle, not just physically but emotionally, and I worry about the future. Sophie’s emotional support has been invaluable. I can be totally honest with her, and she knows when I am struggling.
“Sophie has been able to get my pain under control without having awful side effects. Chronic pain drains your energy and affects every area of your life, so this has made a huge difference to me.
“Sophie helps with my bowel issues, giving dietary advice; it is also extremely helpful that she can prescribe and tweak my medication.
“If other departments have been slow to act, Sophie contacts them to get things moving. This kind of advocacy is so helpful.
“The work of a good CNS is invaluable to patients like me. They are a lifeline and an essential bridge between the patient, their oncologist and other clinicians. I’m not sure how I would cope without the amazing care Sophie gives.
“Sophie’s professionalism, extensive clinical knowledge and experience are outstanding. I have complete confidence in her and her decision-making, and I know she will always do her very best for me. Not only is she a wonderful nurse, but she is also an exceptional human being.
“And Sophie is not alone. Almost without exception, I have found the staff at The Christie, clinical and non-clinical, to be friendly, supportive, and extremely caring. It hasn’t been perfect, but this is inevitable with the enormous pressures on the staff.
“One of the best things about The Christie is how included I am in decision-making. My consultant encourages questions and discussion, listens carefully, and treats me equally. That is very empowering.
“The Christie is a happy place, where the professionalism of the staff goes hand in hand with their warm sense of humour.
Libby has 2 sons, James and Nathan, and is married to John, a retired IT consultant and musician/songwriter with five albums; she co-writes the lyrics with him. Libby loves to visit gardens, and 2 years ago took up watercolour painting, which she says helps with stress and anxiety.
The cancer clinical nurse specialist - Sophie Maycock
Sophie is Libby’s clinical nurse specialist (CNS). She qualified as a nurse in 2017, and her first job was at The Christie as a staff nurse on ward 12, caring for a range of patients. She took up her first clinical nurse specialist role at The Christie in 2020 in supportive and palliative care, a position that involved providing holistic care for patients with cancer or those struggling with the symptoms of cancer treatment.
Sophie had always enjoyed biology at school and was motivated to become a nurse by a desire to help deliver high-quality patient care. When she did some initial research before university, she discovered that nursing was a varied and diverse career with many opportunities to learn and develop.
“During my second year as a student nurse, I worked in a lung cancer ward, caring for patients with very complex needs,” said Sophie. “I saw for myself how devastating a cancer diagnosis can be for patients and their families and realised how impactful being a cancer nurse would be.
“Since becoming a cancer CNS, I have seen how care continues to become increasingly complex due to new treatments, with patients living longer and the increased prevalence of cancer.
“In my role as a cancer CNS, I play a pivotal role in bridging the gap between medical oncology care and general care. I support patients in a personalised way to help improve their quality of life. And use my specialist knowledge to help coordinate care during one of the most challenging times in a person’s life.
“It is a tremendous honour to be part of a cancer patient’s care and to have an impact on improving their quality of life. It is so rewarding to help patients make memories with their loved ones – that is the best part of my job.
“There is no such thing as a typical day as a cancer CNS. My role varies from day to day. The needs of patients usually guide me. I manage both inpatients and outpatients with complex symptoms related to advanced gynaecological cancer. I provide expertise and advice about complex symptom management and control, alongside psychosocial support for patients, to support them to live as well as possible with the effects of incurable gynaecological cancer.
“I work autonomously and am part of the supportive care and gynaecology oncology teams. I also work closely with community teams or hospices to ensure high-quality continuity of care for patients. A unique dimension is that my hybrid role also involves clinical research.
“The role of the cancer CNS differs from other nursing roles as it is more personalised to a patient’s needs and requires specialist in-depth knowledge about cancers and treatments. More time is available to review patients so I can take a more holistic view of their care rather than just focusing on physical symptoms.
“Caring for patients like Libby is a real honour and privilege. A cancer diagnosis is so challenging for patients, and my role gives me a personal insight into their lives. When patients like Libby can be completely open with me about their concerns, I can support them much more effectively. You develop a special and unique relationship.
“One of the best things about working at The Christie is the enjoyment and satisfaction I get from meeting and caring for patients and families. I am grateful to work with a range of colleagues, including oncologists, nurses, allied health professionals, admin staff, porters, and cleaners, who are so kind and compassionate, which makes my day-to-day job easier.
“Being at a specialist hospital also means I learn from my colleagues. I am grateful for the opportunities for further study to help develop my knowledge and learning, all to provide better patient care.
Reflecting on her experience of being a cancer CNS, Sophie is keen to encourage newly qualified nurses to consider a cancer CNS role in their careers. “I have learnt more about oncology and oncology treatments as well as getting to know my patients really well,” she said. “If any nurse is interested in a cancer CNS role, I would advise them to take the opportunity to shadow a clinical nurse specialist or talk to them about how they got to their current post.”
National Cancer CNS Day
National Cancer CNS Day is co-led by the Greater Manchester Cancer Alliance, the United Kingdom Oncology Nursing Society, Macmillan, NHS England and the Royal College of Nursing. For further information, please visit the UKONS website.
Ovarian cancer month
March is also Ovarian Cancer Awareness Month. In the UK:
- A woman dies of ovarian cancer every 2 hours
- Only 44% of women diagnosed with ovarian cancer will survive beyond five years
- The majority of cases are diagnosed at an advanced stage (Stage 3 or 4)
- There is currently no screening tool for ovarian cancer – cervical screening does not detect it
(Source: Ovarian Cancer Action's ovarian cancer statistics)
Libby recommends 3 very helpful ovarian cancer charities for accurate information and support:
There is also a support group for patients with gynaecological cancers held on The Christie site at the Maggie Centre. Visit our Maggie's page for further information or call 0161 641 4848.