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.
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.
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.
Practical aids and equipment
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. 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.