Welcome to the “Living with Neuroendocrine Cancer” section. Living with neuroendocrine cancer can often feel like riding a rollercoaster, with its ups and downs and moments of uncertainty. This section is designed to support you through those challenging times by addressing some of the key issues you might face. Here, we provide insights and practical tips on various aspects of life with neuroendocrine cancer, from managing pain and maintaining relationships to coping with uncertainty and navigating diet and nutrition. We also offer guidance on working, financial advice, travel, and driving, to help you live as fully and comfortably as possible. Our goal is to offer support and information that can make your journey a bit smoother and ensure you feel less alone in managing your condition.
Navigating Life with Neuroendocrine Cancer
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A “Roller-Coaster of Emotions and Feelings” & Finding Ways to Cope
Living with neuroendocrine cancer often feels like an emotional roller-coaster, with highs and lows that can be challenging to navigate. Our handbook explores the emotional impact of the diagnosis and treatment, offering strategies to help you find ways to cope.
Relationships – Family and Friends
Neuroendocrine cancer can impact your relationships with family and friends in significant ways. Our handbook discusses how to navigate these changes, maintain open communication, and seek support from loved ones. It provides tips for discussing your diagnosis and treatment with those close to you, managing their reactions, and strengthening your support network.
Intimacy and Fertility
Neuroendocrine cancer can impact both intimacy and fertility, posing unique challenges. This section of our handbook provides information and support for navigating changes in sexual health and fertility during and after treatment. It covers topics such as preserving fertility, understanding the effects of treatments on reproductive health, and maintaining intimacy.
Children
Explaining a diagnosis of neuroendocrine cancer to children can be challenging and emotionally difficult. This section of our handbook offers guidance on how to communicate with children about the illness in an age-appropriate manner.
Work and Employment
Managing work and employment while dealing with neuroendocrine cancer can be challenging. This section of our handbook offers practical advice on navigating workplace conversations, understanding your rights, and finding a balance between treatment and work responsibilities.
Finances
Dealing with neuroendocrine cancer can have significant financial implications. This section provides guidance on managing the financial challenges that may arise, including tips on applying for benefits, life insurance, and accessing financial aid.
Driving
Maintaining independence is important, and this section offers advice on driving with neuroendocrine cancer. Learn about the considerations and potential limitations related to driving, how to assess your ability to drive safely, and the legal requirements that may apply. Additionally, explore options for assisted transport and the Motability scheme to ensure you have the necessary support to stay mobile.
Travelling with Neuroendocrine Cancer
Navigating travel with neuroendocrine cancer involves careful planning and consideration of your health needs. This section covers essential aspects such as utilising The Sunflower Lanyard Scheme for discreet assistance, obtaining a disabled rail card for discounted travel, and understanding the importance of appropriate travel insurance when travelling abroad.
Pain
Select the image to watch Dr. Ros Taylor, a Palliative Specialist, offer expert insights and compassionate guidance on pain management in neuroendocrine cancer.
Listen to our podcast featuring Sally, who shares her journey and insights into managing pain with neuroendocrine cancer, offering relatable perspectives and practical advice.
Sleep
Quality sleep is essential for managing neuroendocrine cancer. This booklet explores the impact of cancer and its treatments on sleep patterns, common sleep disturbances, and strategies to improve sleep quality.
With thanks to our Neuroendocrine Cancer advocacy partners in Australia for sharing this poignant article on fatigue and weakness amongst our patient community.
Diet and Nutrition
Maintaining a healthy diet is essential for managing neuroendocrine cancer and supporting overall well-being. While there is no universally recommended diet for individuals with neuroendocrine cancer, making dietary adjustments based on symptom experience can aid in self-care. It is advisable to undergo a formal assessment and consultation with your specialist team or dietitian.
Aftercare and Planning for the Future
This section focuses on ongoing tests and responding to new symptoms after treatment for neuroendocrine cancer. Aftercare involves regular monitoring through scheduled check-ups, imaging tests, and consultations with specialists to detect any recurrence or new developments early on.
Support Available
We’re here for you not just throughout diagnosis, but through every step of your pathway with neuroendocrine cancer.
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Mental Health Support
Coping with neuroendocrine cancer involves not just physical but also emotional challenges. This page focuses on strategies to maintain mental well-being, providing guidance on managing anxiety, and depression, and coping with the emotional impact of diagnosis and treatment. It emphasises the importance of seeking support from mental health professionals and connecting with peers facing similar challenges.
Support Networks
Building a support network is crucial for individuals facing neuroendocrine cancer. This page highlights the significance of connecting with support groups, online communities, and local resources. It offers advice on finding peer support, sharing experiences, and accessing reliable information to navigate the complexities of treatment and aftercare.
Progressive Disease
Progressive disease marks the stage where neuroendocrine cancer continues advancing despite treatment efforts. Monitoring through imaging, blood tests, and clinical evaluations is crucial to assess disease progression accurately. Open communication with healthcare providers helps navigate this phase, ensuring informed decisions about ongoing care and treatment goals.
Lived Experiences
Explore real-life patient experiences with living with neuroendocrine cancer through our collection of personal stories, podcasts, and videos. These resources offer valuable insights and perspectives that can help you navigate your own journey with confidence and understanding.
Financial Support
Explore financial support options, including our Travel Welfare Grant, designed to assist individuals navigating the challenges of neuroendocrine cancer.
Get in Touch
For any enquiries or support related to neuroendocrine cancer, please don’t hesitate to contact us. We’re here to assist you every step of the way.
Symptoms
Tests
Newly diagnosed
Treatments
What is Neuroendocrine Cancer?
Living with Neuroendocrine Cancer
How we can support you
NC research and our campaign work
End of life care