Managing your own care can be necessary when dealing with a long-term health condition or illness, such as some cancers. It can be overwhelming to think about at first, especially when you might have been recently diagnosed.
Learning more about self-management for your own health can help you at any stage of your experience with cancer. This can mean understanding your condition and what you might need, decision making, and knowing where to get help when you need it.
We’ve created some quick links to help you to get to what you’re looking for:
Understanding your diagnosis and side effects
Understanding your diagnosis and treatment plan might be your first step in managing your own healthcare.
“It is tough so early after being told but it does become manageable once you have a plan in place.”
Whatcanyoudo, "Non-hodgkin lymphoma" forum
Asking questions
It’s important to make sure you have all the information you need from your primary care team. You can ask questions about anything you don’t understand. Appointments can be overwhelming sometimes. You might want to consider bringing someone with you if you can. You could also bring a notebook to make notes.
You could plan the questions you’d like to ask in advance of meeting with your healthcare team. We have some ideas for questions you might like to ask:
You can ask questions at any time during your diagnosis and treatment.
You can ask questions about your diagnosis and treatment. You can also ask about side effects, or advice on managing your condition at home alongside other health problems you might have.
Remember your healthcare team can also provide help with self-management. This could include helping you to put a plan in place for looking after yourself at home.
Finding information online safely
It can be tempting to look up your diagnosis or treatment options online. It’s important to make sure you are finding information in the right places to help you manage your care.
It’s easy to find lots of stories online which might not be true, but can still cause concern. The following websites are from official health authorities and registered charities. These are safer places to find more accurate information.
The Online Community cancer forum is an amazing place to find comfort and support from other people. Members might offer tips for how they managed their treatment. But, it’s always important to remember that everyone’s experience can be different. What helped another member might not be right for you.
We’d always recommend getting back in touch with your healthcare team if you have any questions or concerns. They have access to your medical records. This means they are best placed to give you the information you need about your diagnosis or treatment.
“I think if you know what to expect you’ll be fine. Maybe ask them to explain what they’re going to do as they go along?”
Managing your medication and treatment is a key part of managing your healthcare.
Macmillan has an organiser tool to help you manage your key contacts, scan results, appointment notes, medications, symptoms and treatment. This is a booklet where you or your carer can take notes and keep track. You can order a Macmillan organiser tool here, which includes a guide to managing your care. You can also order just a records booklet here.
Appointments
Your healthcare professional will usually give you a plan that says when you will have your treatment. It’s important not to miss any of your appointments if you can.
Arrange how you are going to get to your appointments in advance. Please remember it may not always be advised to drive yourself to receive treatment at hospital, or you may feel tired or unwell.
Some hospitals offer transport services or free parking for patients undergoing certain treatments. Ask your healthcare team for further information about what your hospital offers.
You might also want to consider who you would like to be at the appointment. If you can’t have someone else there in person for any reason, you could arrange for a loved one to be on the phone with you while you are at your appointment.
“You’ll begin to feel so much better once you have day 1 out of the way & start ticking off those appointments.”
Medication
You need to take your medication exactly as you are told to by your doctor or nurse. It’s important to ask your doctor or nurse if you’re not sure about how to take your medication.
“I found all the medication a bit complex so made my own chart of when to take/apply things and pictures of what they looked like in case someone else had to find it.”
Susan55, comment on "Radiotherapy: Tips from the Community"
You may get side effects from treatment or medication. It might help to write a list of any side effects you have. You could write down when they happen and how they affect you. This could be helpful to bring along to your appointments.
You might be considering lifestyle changes to improve your quality of life, or to help while you're going through treatment. Lifestyle changes might include changing your diet or exercise routine, talking to your employer about adjustments, or even adapting your home to suit your needs. Lifestyle changes aren’t necessary for everyone who is affected by cancer. It can still be useful to think about what might help you at home.
Macmillan can provide guidance and financial support to help you with changes you might need to make to your home.
Family and household members
It can be important to think about how lifestyle changes might impact your family and other people that you live with.
This could include planning childcare options while you are in treatment. This could also include asking family members to help by preparing food for you when you are feeling unwell.
Thinking about work
You might need to consider how your diagnosis and treatment will affect your work now, and in the future.
This could include making sure you understand your rights at work, understanding whether you are entitled to sick pay, and what decisions you might need to make.
Knowing who to contact
It can be helpful to make sure you know who to contact, when.
People who have been diagnosed with cancer will usually be given a contact number for their healthcare team or a key worker, such as a specialist nurse, who you can contact if you need to. Make sure you, and perhaps a loved one, know how to get in touch with the right team or professional at your hospital if you need help.
You can also contact Macmillan’s Support Line if you have any questions or if you would just like to chat. Our Support Line teams can also help you to access practical support, such as financial help. Our Support Line teams include our Macmillan nurse specialists. Our nurse specialists can’t access your medical records, but they can answer questions and offer guidance.
You can contact the Support Line via email, live webchat or by calling 0808 808 00 00 7 days a week, 8am-8pm.
“The cancer diagnosis process can be challenging in so many ways but talking with others who are or have walked the same type of cancer treatment journey will help you navigate this difficult time.”
TheHighlander, "New to the Community" group
What you need to do to manage your healthcare depends on your diagnosis and situation. It’s important to talk to your doctor or nurse about any of your concerns. It can be helpful to remember that self-management can mean looking after your emotions and mental health too. Remember you can reach out to the Online Community 24/7 to talk about how you feel. If you have some tips from your experience managing your healthcare, why not share them in the comments below?
Image used is from the Disabled and Here project.
