ALK Support
This section has been informed by ALK Positive UK, a registered charity established by patients for patients. The charity provides a range of support for people living with or affected by ALK+ lung cancer, including a private online support group, regional lunches for patients and their families, advice booklets and leaflets.
Click here to visit the ALK Positive UK website.
ALKPositive.org.uk
In this video, lung cancer clinical nurse specialist Delyth McEntee speaks to Debra Montague, chair of ALK Positive UK, about how she has felt throughout her cancer journey and the support available for patients. The topics covered include:
It is very natural to experience low mood or feelings of sadness or loss after a cancer diagnosis or during treatment. You can read more here about how cancer can make you feel: How cancer can make you feel | Coping with cancer | Cancer Research UK
Sometimes, though, it can be difficult to differentiate between distressing feelings and an emotional state that might represent becoming mentally unwell. It is important to share how you are feeling throughout your cancer experience with your clinical nurse specialist (CNS) or GP, who will be able to support you and refer you for further help if you need it.
Click the items below and visit the links underneath to learn more about mental health and the support available.
Our mental health is just like our physical health: we all have it and we need to look after it. Good mental health means that you’re able to feel, think and react in the ways that enable you to live your life how you like. In a period of poor mental health, you may find the ways you’re feeling, thinking and reacting are hindering your ability to live well. This can feel the same as or worse than a physical illness.
Depression is more than feeling unhappy, worried or fed up for a few days. If a person is experiencing depression they may feel persistently sad for weeks or months. Depression can be mild, moderate or severe, and can cause a range of cognitive and mood symptoms including feeling hopeless, worthless or guilty; persistently feeling sad, low or fed up, or no longer finding enjoyment in things you previously enjoyed. It can cause physical symptoms such as poor sleep, reduced or increased appetite and reduced sex drive, and can affect your ability to cope with everyday activities such as eating, sleeping and work.
With the right treatment, depression can get better. It’s important to speak to your CNS, oncology team or GP who can help you get the treatment you need. Treatment can involve a combination of lifestyle changes, talking therapies and medicine, depending on whether you have mild, moderate or severe depression.
Occasional feelings of anxiety are a normal human experience. It is natural to feel anxious and panicky when diagnosed with cancer or at any time during your cancer experience. However, anxiety becomes a mental health problem when the worrying thoughts and fears are persistent, overwhelming or particularly intense. Anxiety can also cause physical symptoms such as poor sleep; gastrointestinal symptoms such as nausea or loss of appetite; palpitations or a racing heart, or panic attacks.
Again, speaking to your CNS, oncology team or GP is important as they can help support you, signpost you to helpful resources or refer you for further support as needed. There is treatment available for anxiety including talking therapies and medication. There are also a number of self-care steps you can take to help with anxiety or progressive muscle relaxation.
Learn more about depression: Types of mental health problems | Depression – Mind
Learn more about treatment for depression: Treatments – Mind
Learn more about anxiety and panic attacks: Anxiety and panic attacks – Mind
An example of breathing exercises from Headspace can be found here: Headspace | Mini meditation | Breathe)
An example of progressive muscle relaxation can be found here: The Christie – Relaxation
In this video Duncan, who was diagnosed with ALK+ lung cancer five years ago, shares his experience of working after diagnosis. The topics covered include:
For many people with cancer, exercise is not only safe but can be beneficial. It is always a good idea to talk to your oncology team about your plans for exercise if you are unsure.
Cancer Research offers some information on exercising with cancer: Exercise guidelines for cancer patients | Cancer Research UK | Coping physically
We have joined with the Ruth Strauss Foundation’s Family Support Team to answer your most frequently asked questions about how to talk to children about your ALK+ diagnosis.
The charity was set up in the legacy of Ruth Strauss who was diagnosed with ALK+ lung cancer in 2018 and died that same year. Ruth was aware that her prognosis was short and wanted to inform her two children, then aged 10 and 13 years old.
At the Ruth Strauss Foundation, we understand you might be worried or unsure about telling your children you have cancer. You may feel overwhelmed, shocked or fearful, and instinctively want to protect them from feeling the same way.
Children and young people say they want to know about their parents’ health and what changes this may bring for them. Young people tell us that they want to be included in discussions and decision making and be given practical help. When children are prepared and informed about their parent’s cancer, it increases their resilience and means they can get the support they need.
If you would like advice, guidance and support to talk to your child(ren) about your diagnosis please get in touch with the Family Support Team via: https://ruthstraussfoundation.com/info-and-support/support/
There are free resources available which can aid these conversations: https://ruthstraussfoundation.com/resources-for-families/
In this video, Emma shares her experiences of parenting with ALK+ lung cancer. The topics covered include:
It can be an anxious and difficult time when someone you care about has cancer, and it’s normal to have a lot of different feelings throughout their journey. There are a number of resources available to support families and friends of those with cancer; some of these can be found below:
Click here to access Kathy’s blog about being a carer:
Kathy’s Blog
You may have many more questions about living with ALK+ lung cancer. Below are some of the questions you might have, and the places you can go to for advice. Further support is also available via the ALK Positive UK charity.
