New research to mark Blood Cancer Awareness Month this month has revealed that 29% of carers are spending the equivalent of an average working week or more to care for a loved one living with cancer[i]
29% of people who care for a loved one with cancer do so for the equivalent of a full working week or more, with some people caring for more than 45 hours per week[i]. Of these people, 22% are also working a paid full or part time role[i].
The research, commissioned as part of a new Make Blood Cancer Visible campaign, also showed that 91% of people living with blood cancer felt the care they received was of huge or high importance to them[i].
The Make Blood Cancer Visible campaign, a collaboration between the Irish Cancer Society, Multiple Myeloma Ireland, Chronic Lymphocytic Leukaemia Ireland and Janssen Sciences Ireland, aims to generate more awareness of blood cancers and support those affected by the disease
Blood cancer is an umbrella term for cancers that affect the blood, bone marrow and lymphatic system.[ii] Most types of blood cancer are rare, life-threatening conditions with small patient populations[ii]. There are over 140 different types of blood cancers, which can be classified into three main groups, leukaemia, lymphoma and myeloma[ii]. Together, they comprise nearly 10 per cent[iii] of all cancers, with more than 2,000 people across Ireland diagnosed annually[iv]. Blood cancer is the fourth most common cause of cancer-related death in Ireland[iii].
Despite the significance of their caring role in terms of time commitment, the research revealed that almost two thirds (63%) of cancer carers received no support on how to carry out their role[i].
Areas of training and support that would have helped them better prepare for their role included: mental health or mindfulness training (46%); information on support groups for carers (40%); advice on how to combine caring activities with managing their own life and household (36%); information on diet and exercise (28%) and how to get the most out of an appointment (33%) with a healthcare professional[i].
Information videos for people living with blood cancer and their carers
To address the issues raised in the research, the Make Blood Cancer Visible campaign has just launched a series of information videos to provide practical advice and support for people living with blood cancer and their carers.
Developed in conjunction with leading healthcare professionals and experts in the area of blood cancer care, the series addresses emotional wellbeing for carers and patients, diet and nutrition, and advice for carers.
The information videos are available for the public to access on the Irish Cancer Society, Multiple Myeloma Ireland and CLL Ireland websites.
See cancer.ie/bloodcancer to view the videos and for more details.
The journey for people living with blood cancers can be different to those with solid tumour cancers, such as breast, prostate and lung cancer. This is due to the many types of blood cancers and different treatment options available. Acute, aggressive forms of blood cancer will require immediate treatment, whereas slow-growing blood cancers can be experienced as a chronic condition[v]. With some forms of blood cancer the person does not require immediate treatment or may never require treatment and instead will be called for regularly blood tests and appointments to monitor the situation in a period known as ‘watch and wait’ until the disease progresses, and treatment may become necessary[v]. Following treatment, people with blood cancer may enter a period of remission where the cancer cells are completely or partially gone and they are monitored closely to ensure the cancer does not come back[v].
Make Blood Cancer Visible campaign ambassador Louise McSharry who was diagnosed with Hodgkin’s Lymphoma, a type of blood cancer, in 2014 said, “I know from my own blood cancer journey, how much my husband Gordon’s help and support meant to me and how important it is for people going through diagnosis and treatment to have the support of partners, relatives and friends to help them through this scary and difficult time. I would urge people affected by blood cancer to access all the information and services they need. The Make Blood Cancer Visible campaign has created a video series that will help provide some of the knowledge they need and also where they can avail of further supports.”
Professor Peter O’Gorman, Director of Pathology and Consultant Haematologist, Mater Misericordiae University Hospital (MMUH) said, “Huge strides have been made in the treatment of many blood cancers. For example Multiple Myeloma survival has doubled in the last three years because of new treatments. A network of Irish haematologists is collaborating with the top global centres to bring access to the best new treatments for Irish patients. The message is one of hope and progress for patients with blood cancer in Ireland.”
Averil Power, CEO of the Irish Cancer Society said, “We would urge people living with blood cancer and their carers to access the information videos on our website to provide them with the additional support and information that they may need. The Irish Cancer Society provides a specialist Cancer Nurseline on 1800 200 700 and our website cancer.ie outlines our expert cancer information and support services that are available, including our Daffodil Centres in 13 major hospitals nationwide.”
Jan Rynne, Chair, Chronic Lymphocytic Leukaemia Ireland said, “The journey for a person with Chronic Lymphocytic Leukaemia (CLL), can be different than that of people with acute blood cancer or those with a solid tumour malignancy, as they do not always require immediate treatment and instead will go through a ‘watch and wait’ period where their symptoms and blood count are regularly monitored until their disease progresses and treatment becomes necessary. This monitoring stage can cause anxiety as they have no control over how the disease progresses. We hope that the information imparted by this campaign will somewhat help them to deal with some of the challenges of living with the disease.”
Mary Kelly, Chair, Multiple Myeloma Ireland said, “The research findings clearly demonstrate the significant time commitment involved in taking care of a loved one with blood cancer and the impact this can have on their own life with many people finding they do not have as much time for holidays, hobbies, socialising and spending time with their families. It is of the utmost importance that people who are providing this vital support for people with blood cancer, find the time they need for themselves and to ensure that they are getting the care that they need to help them during this stressful time.”
Laurent de Saint Sernin, General Manager Commercial Operations, Janssen Sciences Ireland, says. “We are extremely proud to collaborate with our partners on the Make Blood Cancer Visible campaign. We hope that more people will understand the journey patients and their families go through when they receive a blood cancer diagnosis. It is our mission to help them to overcome the challenges they face and to improve supports and treatments for all people affected by blood cancers.”
What’s in the videos?
- Dr Paul D’Alton, Head of Psycho-Oncology, St Vincent’s Hospital, explores the emotional journey for blood cancer patients from diagnosis through treatment; provides practical advice and techniques for people to look after their own mental health and stress levels during this time; and provides coping mechanisms for the people caring for a loved one with blood cancer.
- Eleanor Sweeney, Senior Dietitian in Oncology & Haematology. Beaumont Hospital, Dublin provides advice on diet and nutrition for the person living with blood cancer including the types of foods they should eat or avoid; recommendations on supplements and multivitamins; information on reliable diet and nutrition resources people can access; and information for the carer on support they can provide to help the person with a healthy and nutritious diet.
- Anna Drynan Gale, Cancer Information Nurse, Irish Cancer Society explores ways in which life may change for the person caring for someone with blood cancer; how they can look after their own physical, mental and emotional wellbeing; and resources they can access to provide them with the support they need.
The videos are available to view on the following websites:
Visit cancer.ie/bloodcancer or follow @JanssenIE, @IrishCancerSoc, @MyelomaIreland and @CLLIreland to join the Makes Blood Cancer Visible movement.
[i] Make Blood Cancer Visible research. Commissioned in August 2018 and conducted by Empathy Research.
[ii] Anthony Nolan. What is blood cancer? Available at: https://www.anthonynolan.org/patients-and-families/blood-cancers-and-blood-disorders/what-blood-cancer Last accessed August 2018.
[iii] Irish Cancer Society: Blood Cancer Network Ireland (BCNI). Available at: https://www.cancer.ie/research/collaborative-research-centres/blood-cancer-network-ireland#sthash.CWdyy2fw.dpbs Last Accessed August 2018
[iv] National Cancer Registry Ireland. Available at: http://ncri.ie/data/incidence-statistics. Last accessed August 2018.
[v] Bloodwise.ie. What is blood cancer? Available at: https://bloodwise.org.uk/info-support/blood-cancer/what