Cancer Support: Practical Tips for setting up a support network

Being diagnosed with cancer can be a life-changing event, and navigating the challenges that come with it can be overwhelming. It may feel like all at once you have to learn a new language, deal with massive emotions, juggle your appointments and routine, and manage extra expenses. Building a support network can be an invaluable step in coping. Importantly, it may be able to provide emotional support, practical assistance and access to services and resources to help manage your appointments, your symptoms, and improve your feeling of security and your quality of life. This network can consist of family, friends, healthcare professionals and support groups who can help you navigate this “Oncology world” that you have suddenly been thrust into.

What is the benefit of having a support network?

Research shows that social support can have a significant impact on the psychological well-being of patients with cancer. A study published in the Journal of Psychosocial Oncology found that patients with strong social support had better emotional adjustment to their illness and reported less distress than those with less support. Additionally, another study published in the Journal of Clinical Oncology found that social support was associated with better quality of life and lower levels of depression and anxiety among cancer patients.

In addition to emotional support, a network can also provide practical assistance with tasks such as transportation to appointments, note taking, grocery shopping, meal preparation and household chores. This may be especially important to patients experiencing treatment related side effects such as fatigue or other physical limitations. And don’t be afraid to ask or be specific – friends often want to help but don’t know how, so giving them a job to do can be a way for them to feel helpful to you. If not family and friends, there are many groups, healthcare practitioners, charities or services that can help for part of this network of support.

Overall, setting up a support network can be an essential part of coping with cancer.

Where can I find a cancer support group?

Joining a support group or seeking support from cancer charities and organisations is a great way of meeting people that may be going through a similar situation, or carers that have experience supporting patients with cancer. This is a personal preference, and some people may find this helpful, while others prefer to steer clear. In essence, support groups aim to provide a safe space to share feelings and experiences, and to create a sense of community. The cancer experience can feel very lonely, especially if you liv eon your own, or if you think your closest family and friends don’t understand what you are going through. Cancer charities and organisations can also provide resources and practical support for patients and their families, sometimes including in home support, accommodation near hospitals if you have to travel, hotlines you can call, and a range of online resources.

Many hospitals, cancer centres and charities offer support groups, or you can find online support groups according to your preferences (eg cancer type, age range, location) if you search for them.

Here some links to help you find a suitable cancer support group:

The Cancer Council allows you to search by area (in Australia), they have a list of in person as well as telephone support services

Peter Mac lists cancer specific support organisations, including groups for young people and for carers

Cancer Australia by the Australian Government also provides a list of groups and organisations.

What are some other practical cancer support services?

Gather My Crew – an app to organise your support crew, booking in who does which job, when to take you to appointments, when the bins need taking out. Genius.

My Cause – helps you set up a fundraising site for someone with cancer

CanTeen provides tailors support and resources for young people (12-25 years old) with cancer. Their services include events, programs, articles, counselling, podcasts and more

Redkite offers support services for children with cancer and their families. From advice and counselling, to practical and financial support, they are a fantastic resource.

Mummy’s Wish – a lovely charity that supports mums with cancer, who on top of their diagnosis, have young children to look after. They can support with counselling services, meal deliveries, cleaning etc. And our favourite – a teddy bear mum can record her voice on to, to still say good night to her kids on days she may need to be in hospital.

Advanced Care Planning – helping you plan your future healthcare

What are five practical tips for setting up a support network?

1.       Reach out to family and friends: The people closest to you can be (and usually want to be) a source of support and comfort during this difficult time. Let them know what you're going through and how they can help, and don’t hesitate to be fairly specific with your requests (sometimes people need to be told that to do, and it helps them feel useful too). Research has shown that social support can improve psychological well-being and quality of life of patients with cancer (1).

Some ideas how a family member or friend may help you:

• Drive you to and from appointments
• Go shopping for fresh and organic food, or better yet, create nourishing meals for you
• Walk your dog or help with kids (eg school pickups, driving them to activities, outings while you nap)
• Household chores such as emptying the dishwasher, mowing the lawn, or putting on or fold a load of laundry

2.     Talk to a counsellor or therapist: A cancer diagnosis is always emotionally challenging and brings up all sorts of thoughts and feelings. It's okay and important to seek professional help, even if you might believe that you are coping well. An impartial health practitioner can help you address your feelings and fears, develop coping strategies when you need them, help navigate relationship challenges that may occur, and improve your mental health. Whilst there are trauma and oncology specific Psychologists available, studies have found that any counselling can improve the quality of life and psychological well-being of cancer patients (2). For those readers that are in Australia, remember you can access a Mental Health Care plan through your GP that will give you a Medicare rebate.

3.     Consider joining an exercise program: Exercise and wellness programs can help improve your physical and emotional well-being during cancer treatment, and can be another great and informal way of meeting other people that may be in a similar situation. Programs like yoga, meditation, and tai chi can help reduce stress and improve mood. Additionally, research has shown that physical activity not only improves the quality of life and reduce various side effects in patients with cancer, but may also reduce mortality rates and prevent risk of recurrence (3).

4.     Create a network of support services, such as allied health practitioners that help with specific needs, essentially forming a team of care around you to help with what may pop up. For example, a Nutritionist may be helpful if you are experiencing changes to your appetite or weight, or answer questions about supplementation. A remedial or oncology massage therapist and an acupuncturist are fantastic for stress management, sleep support and physical wellbeing, while a lymphoedema therapist or physio can help with specific physical pain or swelling. You may also like to engage the services of a Reiki practitioner, Hypnotherapist or meditation teacher for additional stress management support.

5.     Stay in touch with your nurse coordinator or patient navigator: A nurse or patient navigator is a best healthcare professional who can help guide you through the healthcare system and connect you with resources and support. They can help you if you have an urgent question or side effect, may help you manage appointments and referrals, and provide emotional support. Many hospitals and cancer centres offer nurse coordinators or patient navigation service.

In conclusion, building a support network is essential when you have received a cancer diagnosis. Reach out to family and friends, join a support group, talk to a counsellor, join an exercise program if you feel up for it, and connect with relevant support nurses in your treatment team. Remember that you're not alone and that there are resources available to help you through this challenging time.

Image source: Unsplash

References

1.     Kroenke et al (2013). Social networks, social support mechanisms, and quality of life after breast cancer diagnosis. Breast cancer research and treatment, 139(2), 515–527

2.     Li et al (2012). Evidence-based treatment of depression in patients with cancer. Journal of Clinical Oncology, 30(11), 1187-1196

3.     Kroenke et al (2006) Social networks, social support, and survival after breast cancer diagnosis. Journal of Clinical Oncology, 24(7), 1105-1111.

4.     Manne et al (1998) Cancer-specific support groups: exploring the heterogeneity of benefits. Journal of Psychosocial Oncology, 16(1) 1-25.

5.     Cormie et al (2017) The Impact of Exercise on Cancer Mortality, Recurrence, and Treatment-Related Adverse Effects. Epidemiologic Reviews, 39(1), 71–92