Taking control of your care

When you’re having treatment, it’s easy to feel that you aren’t in control. Everyone has a different relationship with their hospital team. Yours might talk to you first and foremost, and include you in every conversation. Or you might feel that your parents are in the driving seat. How much you want to be involved is up to you but at the least, you should feel the people looking after you are on your side – and that you can talk to them about anything.

How can I feel more in control?

If you’ve been diagnosed recently, you might feel that it’s been a bit of a whirlwind. Decisions might have been made on your behalf about your treatment and certain aspects of your life. Obviously, it’s important to focus on dealing with the emotional fallout, and just ‘getting through it’ might be the most you can take on at the moment.

But the thing is – this diagnosis affects you first and foremost. It’s your life that’s going to be impacted the most. So if you want to understand what’s happening around you, and why, then you should feel empowered to stand up and say so.

There are steps you can take to make sure this happens. Firstly, if your parents are the ones involved in all the discussions – talk to them and say that you want to be included. You should also have the opportunity to tell your consultant this. If your treatment is in a young people’s centre then it’s likely they’ll be pretty good at this anyway.

Also, if you don’t understand something that’s been said – or if you want something explained again – make sure you ask. It can help to make a note of things as they pop into your head. Maybe keep a list on your phone. That way, you can run through everything you’ve been wondering about at the next opportunity.

Remember, you have the right to ask questions and ultimately, you are in charge of what happens to you.

Can I talk to my team in private?

If you want to talk to a professional by yourself, you should always have this choice. It’s especially important if you need to discuss medical history or lifestyle choices honestly. If you feel awkward asking your parents or partner to leave, you could speak to a member of your care team beforehand and see if they can help you with this. Or try to catch them afterwards if you’ve not been able to say everything you want.

Who can I speak to?

During your cancer treatment, you’ll meet different people who all work together to provide you with the best possible care. 

The people you’re most likely to see during your treatment include your nurse, consultant, GP, CLIC Sargent Young People’s Social Worker or Community Worker, or anyone else involved in your care at hospital. You should be able to talk to any of these people about any concerns or worries you have.

Wherever you’re treated, you’ll have a multi-disciplinary team or MDT. This is a group of health and social care professionals who meet and make decisions about your care. You might also have a teenage and young adult multi-disciplinary team (or TYA MDT). They specialise in the treatment of young people with cancer – so will also look at things like your needs and wellbeing. They advise any hospital MDTs treating 16 to 24-year-olds to make sure they get the most appropriate treatment, care and support. 

Professionals who may be involved in your care include: 

How do I get the information I need?

Having good information when you need it most can really help to make sense of things. It’s tempting to start googling but the internet definitely isn’t always the best place to get answers relevant to you. Instead, ask someone on the team of people caring for you.  

Even if the person you speak to can’t help you directly, they will be able to help you find someone who can. It might feel strange to open up about personal things with someone you don’t know well, but they will have heard all your questions before. 

We also have lots of advice about how to manage the impact of cancer on different aspects of your life. Or download or order our booklets free of charge.

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