We understand that talking to your loved one about their sarcoma diagnosis and treatment can be very difficult. You may not know how to support them, and worry that your own fears may make the situation worse.
All these feelings are perfectly normal and it’s very common for family and friends of sarcoma patients to struggle with knowing how best to help. We hope to make things easier by making some suggestions about small things you can do which can make a big difference.
Many patients find it difficult to concentrate during appointments and to remember what was said afterwards. Accompany your loved one to hospital appointments and write down the names and contact details of any health professionals involved in their care. Take notes, fill in forms, and find out about next steps. Ask their GP or Clinical Nurse Specialist (CNS) whether there’s any extra help available. Encourage your loved one to ask questions if they’re unsure or want more information.
You should check that their CNS is present at all critical appointments. If your loved one doesn’t know who their CNS is, ask their doctor about it. It’s also really important that you make sure they‘ve been referred to a sarcoma specialist centre. This is because the National Institute for Health and Care Excellence recommends that anyone with sarcoma should be referred to a specialist sarcoma team for diagnosis and treatment.
Help around the house, with tasks such as shopping, cleaning, laundry and gardening, as well as childcare and pet sitting. You may also need to help with personal care, such as helping them to wash, dress, eat and go to the toilet.
Help them to take their medication. Encouraging them to record what medication they have taken throughout the day can help you both to keep track of it. Ask their local pharmacy whether they offer a home delivery service, and whether they stock days of the week tablet boxes.
Finding out about, organising, and accompanying them to social activities will help your loved one to retain some sense of normality, and will aid their mental health. This can include group activities, for example, at a local community centre, or visits from other family and friends, either at home or at a coffee shop or park. Find out whether there’s a sarcoma support group in their area or help them to join an online support group.
Help them to get and use any practical aids and equipment. Local authorities offer Disabled Facilities Grants to fund adaptations to the home. The NHS offers loans of walking sticks, walking frames and wheelchairs, subject to eligibility. You could buy a personal alarm or security device which calls for help if the person you’re caring for has a fall or a problem at home. These aren’t free but may give you peace of mind. You can also help your family member or friend to apply for a Blue Badge.
Providing your loved one with emotional support can seem daunting. You may not know what to say or how to make them feel better, and try to avoid difficult subjects. However, changing the subject can often make someone feel worse. Listening and validating their feelings, both positive and negative, can really help. There’s no ‘wrong’ way for them to feel, just as there isn’t always a ‘right’ response for you to give. Offering empathy and a listening ear, rather than trying to fix everything, can really make a difference.
A diagnosis of sarcoma is often very frightening, and it’s best to try not to take things personally during times when your loved one doesn’t want to talk to you about their health. Let them know that you’re there, whenever they want to talk. Continue to have conversations about everyday subjects, so they keep maintain a sense of normality. Check in with them regularly, whether by phone, email, text or letter, and when you do, respect their decisions and try not to make assumptions about what they feel or want.
There are two common sources of anxiety for sarcoma patients and it’s good to be aware of these. After treatment, many patients worry about every lump they find and link possible symptoms to sarcoma, even if it’s very unlikely. A lot of patients also experience ‘scanxiety’, which is the anxiety and fear before having a scan and while waiting for the results. It affects some patients more than others and can occur for regular check-ups years after diagnosis. Symptoms of scanxiety can include being irritable and problems with eating, sleeping and toileting. This can make the patient difficult to live with in the days and weeks before the appointment. Information about managing scanxiety and what patients should watch out for after treatment can be found in our Rehabilitation guide.
If you’re worried about your loved one’s mental health, encourage them to talk to their GP or Clinical Nurse Specialist. Also contact your local Maggie’s Centre and ask what services are available. Maggie’s Centres offer practical, emotional and social support to people with cancer and their family and friends.
It’s important to recognise that caring for your loved one can affect your own mental and physical health. This is because many carers put their loved one’s needs above your own. If you’re worried about your own health, seek help from your GP. Make sure you have your own support network too. Carers UK have lots of useful information, including a free telephone helpline and email service.
You can help your loved one find out about any benefits they’re entitled to. Citizens Advice can help you both to find out what they’re entitled to and how to apply.
Comprehensive information about benefits and other financial support can also be found on the Macmillan Cancer Support website.
Looking after yourself
Caring for somebody with sarcoma can impact you emotionally, practically and physically. It’s really important to look after yourself too, so you can continue to provide support. You can do this by prioritising your self-care. Self-care includes:
- Eating healthily
- Keeping active
- Maintaining a good sleep pattern
- Taking time for yourself to do things you enjoy
It’s important to spend time with other family and friends, as this will strengthen your own support network. You could also ask them to share caring responsibilities with you. Local and online support groups are also open to family and friends of sarcoma patients.
It may help to acknowledge your own feelings, positive and negative, and attend low cost counselling if available. You should let other people know if you’re struggling, and there may be respite care available to you.
Let your GP surgery know you’re a carer as many can offer support. The receptionist should be able to tell you whether they can be flexible with appointments and/or have a support group for carers. You should be eligible for a free flu jab too.
You should also make your employer aware of your situation and find out whether you’re entitled to any benefits. If possible, you could volunteer for a short time each week, or take courses to learn new skills.
Comprehensive information about looking after someone with cancer can be found on the Macmillan Cancer Support website.
Sarcoma UK Support Line
- Our support line is independent and confidential
- We believe no question is a silly question
- We lend a listening ear
- We can point you in the right direction