Supporting someone with sarcoma

If your loved one has been diagnosed with sarcoma, it can be difficult to know how to help them, and you may sometimes feel helpless.  

On this page, we have information about how to support someone, from caring for their health, to knowing how to talk to them.

Am I a carer?  

You might not think of yourself as a carer, but if you’re supporting someone with sarcoma often, you probably are. Sometimes families or friends might share caring responsibilities, so you might not be the main caregiver.  

If you’re looking for support for yourself, we have more information about looking after yourself as a carer.  

Understanding sarcoma  

If you’re looking after someone with sarcoma, it might help you to know more about it. Understanding their specific type of sarcoma can help you to care for them, and understand the side effects they might have with their medicines and treatments.  

We have more information about the different types of sarcoma, as well as the different treatment types.  

Going to appointments  

We hear from people with sarcoma that it can be difficult to concentrate at appointments and take in all of the information. If you look after someone with sarcoma, it can help to go with them to hospital appointments.  

You can:  

• help put together a list of questions they might have 
• help them get to appointments  
• write down names and contact details of their doctors  
• take notes and fill out any forms  
• ask their clinical nurse specialist (CNS) for any other help available 
• find out what the next steps are.  

Appointment days can sometimes be long, so you could pack food and drinks for you and your loved one too. 

Their care will be overseen by a CNS or a key worker. You can ask them for more support that will help them at any time.  

Helping with medicines 

Having sarcoma may mean taking different medicines. You can help your loved one to keep on track with taking medicines throughout the day.  

You could:  

• set reminders on your phone  
• organise the medicines into days of the week tablet boxes  
• pick up prescriptions for them  
• ask the pharmacy if they offer home delivery. 

Practical support  

Whether it’s help with finances, or everyday tasks, you may need to support your loved one in practical situations.  

Benefits and government schemes  

Having sarcoma can be life changing. You can help your loved one by organising a needs assessment through your local council. This will help to find out if they can get any special equipment to help them around the home. You may also be able to get help from a paid carer, to ease the pressure on you.

Having sarcoma can also have a financial impact. We have more information about how people with sarcoma can cope financially on our financial support hub. 

If the person you care for has problems with their mobility, it might be a good idea to apply for a Blue Badge. This will help you to park closer to where you’re going, for example at shops and in hospitals.  

Daily life  

There are things you can help with around the home that will save you and your loved one time and effort.  

We’ve put together a list of things you could do:  

• Create a group chat to help with sharing care responsibilities  
• Batch cook meals and freeze them for your loved one  
• Clean around the home little and often to stay on top of things 
• Order a food shop online to save time 

As a carer, it’s important to look after yourself too. We have more advice and support for carers.  

Personal alarms  

If you’re worried about leaving your loved one alone, they can get a personal alarm, sometimes known as telecare. It’s a device they can wear around their neck or wrist. They press the button on the device to get fast medical help.   

Ask your local council if they provide a telecare service. If they do, they’ll arrange a home assessment.

It’s also important to try and have fun. You could: 

• Go out for walks 
• Visit places of interest  
• Go to the cinema  
• Go out for dinner or a coffee 

Emotional support 

We understand that talking to your loved one about their sarcoma diagnosis and treatment can be very difficult. Often, they might need emotional support.

Talking to your loved one about their emotions can seem daunting. You may not know what to say or how to make them feel better. You might also try to avoid difficult subjects.  However, changing the subject can often make someone feel worse. Instead, try to listen to and acknowledge their feelings, both positive and negative. 

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 scary, so the person you’re caring for might not want to talk about their condition. Try not to take this personally if that’s how they feel. Let them know that you’re there whenever they want to talk. Continue to have conversations about everyday subjects, so they keep a sense of normality. 

Check in with them regularly, whether in person, by phone, email, text or letter, and when you do, respect their decisions and try not to assume how they feel or what they want.  

Scanxiety  

A lot of people with sarcoma get something called ‘scanxiety’, which is the anxiety and fear before having a scan and while waiting for the results.

Scanxiety affects everyone differently, but symptoms can include:

• difficulty sleeping 
• feeling irritable 
• low appetite   
• restlessness.  

It might be difficult to help your loved one with scanxiety, as it’s not always easy to know what they’re going through. It might help you to learn more about it, and ways to help them. The cancer charity Maggie’s has useful tips for managing scanxiety.