Introduction
This learning resource provides information about wellbeing for people with serious mental illness who have been diagnosed with cancer and who are undergoing or have completed treatment.
In this module you will find information about:
The importance of wellbeing
Being diagnosed with cancer can provoke a range of strong emotions including fear, anxiety, anger and loneliness. Overcoming these feelings can be challenging and there is no right or wrong way to feel. Taking time to look after yourself and improve your wellbeing will help you to cope with your diagnosis.
Achieving wellbeing involves a balance between factors such as physical health, emotional resilience, positive relationships, and a sense of purpose. Simply put, it is about feeling good and happy in different parts of your life.
In the video below, Rime, a person with lived experience of both cancer and serious mental illness, talks about what she learned about protecting and improving her wellbeing during her cancer treatment.
Your mental health medication and cancer
During the course of your cancer treatment, you are likely to have to take medicines or undergo procedures which could change how your current mental health medications work. For example, taking some medicines together can make one of them work less well, or increase the side effects you experience.
You are in control of making decisions about your health. It should be the role of your cancer team, your mental health team and your GP to help you understand how different treatments might affect you before any treatment plan is agreed. Cancer treatment can move quite quickly but it is important to know that you can take the time to make the right treatment decisions for your own priorities. If you ever need to talk through your options, your cancer nurse specialist should be your first port of call - they have been trained in supporting the mental health needs of cancer patients.
Things that you can do to help stay in control of the treatment process could include:
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Making sure your cancer team are aware of any medications you are taking for your mental health condition or any other ongoing conditions (including herbal or alternative medicines). It can be helpful preparing a list of your ongoing medicines in advance of any appointments.
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Ask how your cancer team is making sure they are working with specialists from your mental health team to understand any potential interactions between your medicines.
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Asking to speak to specialist pharmacists linked to your cancer or mental health teams to get in-depth information on how medicines might affect your health.
Complementary and alternative therapies
There are a range of complementary and alternative therapies which you may become aware of during your cancer treatment. These treatments will work for some people but not for others. Although these terms are sometimes used interchangably, they refer to two different types of therapy:
- Complementary therapies are therapies such as acupuncture or massage that you can use alongside your conventional treatment
- Alternative therapies are generally used instead of conventional medical treatment
Your clinical nurse specialist will be able to speak to you about complementary therapies which might be available to you. The Dimbleby Cancer Centre has information on some complementary therapies available for cancer patients in south east London.
Alternative therapies do not go through the same rigorous testing as conventional treatments. This means that they carry a greater risk of side effects and could make you seriously ill. Make sure that you speak to your clinical nurse specialist before starting any alternative therapy, especially involving taking herbal medicines or remedies.
Supporting your general wellbeing during (and after) your cancer treatment
If you have serious mental illness and are then diagnosed with cancer it can feel very overwhelming. It is important to support your own wellbeing by making and maintaining meaningful connections with others.
These connections could include:
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Having easy access to someone to talk to (either in person or online)
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Joining a local cancer support group
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Discussing religious needs
Your Clinical Nurse Specialist can support you with making these connections by referring you to a social prescriber. Social prescribers are experts who can help you to form links with local organisations and services to help meet your needs and improve your quality of life.
Read more about different types of support for your general wellbeing during cancer treatment below:
You can speak to your Clinicial Specialist Nurse or key worker about the in-person support available in your area, such as support groups and cancer information services.
Support groups
If you prefer to meet people in-person, there are local support groups where you can have face-to-face conversations with others.
Lots of in-person support groups exist for people with different types of cancer. You can also find support groups that bring people together from different backgrounds, such as support specifically for young people with cancer or LGBT people with cancer. You can search for local support services using the Cancer Care Map website.
Some support groups include:
- Maggie’s centres: you don’t need to make an appointment or have a referral to visit, and you can stay for as long as you like.
- Future Dreams: an in-person and online service providing support for people that have been diagnosed with breast cancer.
- Shine: a charity for people with cancer in their 20s, 30s and 40s.
- Trekstock: a charity for people with cancer in their 20s and 30s.
Cancer information services
In south east London, a number of cancer information services are available to help you during the uncertain period around a diagnosis. These services can give you more information about cancer and also help you access additional support if you need to.
If you live outside of south east London, you can contact your GP or health care professionals for the contact details of local cancer information services. If you live in south east London, you can contact the following cancer information services:
- Dimbleby Cancer Care - based at Guy’s Cancer Centre
- The Macmillan drop-in cancer information centre - based at King's College Hospital
- Macmillan advice and guidance service - based at the University Hospital Lewisham
Talking through your emotions with people who are in the same situation as you can be extremely helpful.
Macmillan online support
Macmillan run an online cancer forum called the Online Community, which is available 24 hours a day, seven days a week. There are different forums available to join and professionals are on hand to answer your questions.
Macmillan also provide a 6 week self-help course based on positive psychology called HOPE. The community provides a safe environment where you can talk anonymously with other members who have been diagnosed with cancer.
Cancer Research UK online support
Cancer Research UK provides an online service called Cancer Chat where you can connect with others who have been diagnosed with cancer. There are a number of forums available, and you can see what is being discussed before joining.
Finding other online support
Many other charities, such as Penny Brohn, provide programmes focused on overall wellbeing or other specific areas of support. You can search for other local support services using the Cancer Care Map.
If spirituality or religion are important to you, you might want to speak to someone from your faith or from a spiritual group. Many religious leaders will be used to speaking with people experiencing health problems.
The hospital which hosts your cancer or mental health treatment will also have specialist religious leaders called chaplains. Chaplains provide religious and spiritual support for people undergoing medical treatment regardless of their faith or background. Your hospital will have details of their chaplaincy service on their website.
Exercise and wellbeing
Cancer and treatment for cancer can cause a range of side effects including poor sleep, pain and fatigue. Regularly moving more can help with these side effects and with general wellbeing.
Any activity that improves your strength, fitness and balance is recommended. Simple every-day actions such as walking, taking the stairs and cleaning the house all use energy and count towards being active.
If you feel uncertain about starting exercise or have a particular concern, your GP or clinical nurse specialist can help you with accessing specialist help. For example, they can refer you to cancer physiotherapists, who can help with muscle or joint pain holding you back from exercising in the ways that you would like to.
Fitness levels can be affected by cancer and cancer treatment, so it is important to start slowly and gradually build up the amount of exercise you do.
It is recommended that everyone does about 150 minutes a week of exercise, including aerobic and strengthening activities:
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Aim for 30 minutes of aerobic physical activity, five times a week. This is any activity that makes your heart beat slightly faster or where you are moderately out of breath.
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Aim for at least two strength-based activity sessions a week. Strengthening activity builds stronger muscles and has a positive effect on bone health. This type of activity could include going to a gym and using resistance machines or weights, body-weight exercises such as squats, lunges or press-ups, or climbing stairs.
There are lots of exercise videos available online and the South East London Cancer Alliance has a learning resource containing beginner and advanced exercise routines available here.
Social prescribers can help you search for local exercise ideas such as exercise on prescription, free gym or swimming sessions, dancing or walking clubs. Your cancer care team can also offer you support to find exercise and wellbeing services in your area.
If you live outside of south east London, you can contact your GP or health care professionals for the contact details of local exercise and wellbeing services. If you live in south east London, you can access the Guy's Active You service:
Telephone: 020 7188 9654
Email: active.you@gstt.nhs.net
You can also learn more about being active when you're living with cancer on the Guy's Cancer website.
Nutrition and wellbeing
A healthy diet will help your body recover more effectively from the stress of cancer and cancer treatments. Try to prioritise:
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Drinking enough water. The recommended amount of water you should drink per day depends on your age. You can find out more on the BDA website.
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Maintaining your current weight. Cancer treatment can reduce your appetite and make you lose weight. Do not try and lose weight by reducing how much food you eat, unless you have been told to do so by your cancer team.
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Getting a balanced diet and making sure you get enough protein. Try and make sure every meal has a mix of fruit or vegetables, carbohydrates (such as potatoes or rice) and protein (such as meat, fish, cheese, lentils or beans). Protein is especially important during cancer treatment as it will help your body to rebuild, such as muscle and bone strength.
Find out more about having a healthy diet during cancer treatment from the Royal Marsden and Macmillan.
Most cancer services will also be able to provide individual support to help you manage your diet alongside any existing medications and cancer treatment. For example, you might find that during treatment you have a reduced appetite or that you experience stomach upsets. Speak to your cancer team about being seen by a specialist dietitian to find out the range of support that is on offer.
Find out more about nutrition and cancer by watching this video featuring an NHS cancer dietitian:
Sleep and wellbeing
Getting enough sleep will help you to recover from your cancer treatments and have more energy to go about your daily life.
However, many people with cancer experience difficulty sleeping (insomnia). This can be due to:
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Side effects from medications (including possible side effects or interactions from existing mental health medications)
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Worries or anxieties related to cancer treatment or its wider impact on your life
Whatever the cause, there are things you can do to help improve your sleep. If you think the cause of your insomnia is due to your treatment or medications, speak to your GP, clinical nurse specialist or cancer team. They may be able to suggest additional treatments, modify your medications to help or refer you for occupational therapy and complementary therapy.
If worry or anxiety is keeping you up at night and you feel your overall mental health is declining, it is always worth speaking to your mental health team.
Additional self-help techniques could include:
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Trying out mindfulness, a form of meditation which may help you to feel calmer
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Speaking to others experiencing the same issues. Macmillan has an online chat thread called “Awake” which has new posts every night from people unable to sleep
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Downloading the Sleepio App from Macmillan, which provides tips for managing difficulty sleeping.
Social activities
Social activities such as hobbies, seeing friends or family or volunteering can be more difficult if you’re undergoing cancer treatment. You might feel more tired, or you might feel less confident or motivated about doing these types of activities.
However, continuing to take part in these activities can provide your mental health with a boost. With some planning and support from your cancer and mental health teams where necessary, you should still be able to take part in social activities which you enjoy. Things which might make this easier include:
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Planning around your social occasions to make them a priority – for example resting during the day if you are seeing friends in the evenings, or choosing activities which are less likely to tire you out
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Speaking to your cancer nurse specialist about flexibility around your treatment – for example whether chemotherapy sessions could be timed so you are feeling better for an important social occasion
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Using technology to stay in touch with friends and family – for example using video calls on WhatsApp or other mobile services. If you have a low household income you might be eligible for free data from the National Databank and most hospitals now have free NHS WiFi which you can use to make calls
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Looking for opportunities to use your experiences to help others – for example the volunteering opportunities offered by South London and the Maudsley
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Asking your clinical nurse specialist or another member of your cancer team to refer you to a social prescriber, who may be able to connect you with local organisations or services running activities that are of interest to you
Accessing financial support during (and after) your cancer treatment
Money worries can seriously impact your wellbeing. A cancer diagnosis can change your financial situation and affect your ability to work. You may have to stop working completely or work less.
A variety of support is available depending on your personal circumstances. You may be entitled to apply for certain benefits or be eligible for other financial help. You can also ask your Clinical Nurse Specialist or GP for other support which might be available in your area, such as local charities or for a referal to a social prescriber.
You can also apply for assistance with covering extra costs such as special equipment, prescriptions and travelling to medical appointments.
Because your access to financial support will depend on your personal circumstances, it can be confusing to know which types of support you might be eligible for. You can speak to specialist advisors to understand more and get help with applications:
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If you are being treated at King’s College Hospital, Princess Royal Hospital, Guy’s and St Thomas’ Hospitals, University Hospital Lewisham or Queen Elizabeth Hospital you can speak to the local Macmillan Welfare Benefits Service.
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If you are in other areas, you can speak to the Macmillan Support Line by calling 0808 808 00 00 between 8am-8pm, 7 days a week.
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Alternatively, you can speak to a welfare advisor at the mental health charity Mind. Find out more on their website.
You can also ask your clinical nurse specialist for other support which might be available in your area. The information below explains some of the different types of financial aid you might be eligible for.
Once your cancer treatment begins, you may have to take breaks from work or stop completely.
If you are working and have to take time off due to cancer you may be entitled to receive sick pay.
Your employer should also offer to make reasonable adjustments to help support you at work. These reasonable adjustments are different depending on the individual circumstances, but could include:
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Changing your working pattern or allowing you to work from home if possible
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Changing some of your duties to avoid things which you find more physically difficult
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Providing extra equipment to help you with your job (such as different lighting or desks that you find easier to use)
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Accessing social prescribing to support your health and wellbeing
This support should be available both during any cancer treatment and after you return to work. You can find out more information about sick pay on the Macmillan website.
You may also be able to access financial support to help you work through the government’s Access to Work scheme.
You can learn more about the support for employees and employers on the Working with Cancer website.
The Employment and Support Allowance (ESA) is for people of working age who are no longer able to work due to illness or disability. It can also be claimed by people who have to work less.
There are different types of ESA and a benefits advisor will be able to tell if you are eligible.
Universal Credit (UC)
Universal Credit is a benefit paid to people below pension age who are unable to work due to illness or because they are caring for others.
It is also payable to people on low incomes.
Jobseeker’s Allowance (JSA)
Jobseeker’s Allowance is for people of working age who do not have a job but are looking for work.
As with the other benefits listed you should seek advice about what suits your individual circumstances.
Benefits are for people who need financial help and are paid directly to you by the government. The application process can be difficult to understand but there is help available.
You can find out what you may be entitled to by using a benefits calculator.
Benefits include Employment and Support Allowance, Universal Credit and Jobseeker’s Allowance, but there are other benefits you might be eligible for. The Macmillan website has information about benefits and cancer.
It is worth talking to a benefits advisor who will be able to tell you what you can apply for. You can also find more information on the GOV.UK website.
Watch the video below to learn how a Macmillan Benefits Advisor can help with financial challenges:
Recovery and longer-term support
For many people, recovering from cancer can take months or years. Other people may live with their cancer, or experience permanent changes following their illness or treatment. Although this resource includes information on some common side effects or issues related to cancer treatment, there are many other symptoms you might experience, including:
- Issues related to sex, intimacy or fertility
- Worry and anxiety
- Bladder or bowel changes
- Dry mouth
- Early menopause
- Fatigue
- Changes in your weight
- Memory or concentration problems
Many forms of support continue past the most intense phase of your cancer treatment to help with all these issues, including access to your clinical nurse specialist, who should be available to help you wherever you are in your treatment or recovery. Other support includes health and wellbeing events from Cancer Wellbeing London and many online support groups.
While your medical treatments may become less intense over time, your physical and mental wellbeing will often take a long time to feel like they are stable. You may feel that even if you have fully recovered medically, you are quite a different person to how you were before being diagnosed with cancer.
In the video below, Rime, a person with lived experience of both cancer and serious mental illness, talks about the support that she got during her recovery and beyond.
Summary
