The following document has been created by David Young from his own experience of being diagnosed with Non Hodgkins Lymphoma in 2012, running two cancer support groups, and liaising with various cancer organizations.
It has been created to help newly diagnosed cancer suffers after David realized that many people were disadvantaged within the medical system because they didn’t have the necessary skills to properly navigate it . He realized that his private education, common sense, computer skills, confidence and his ability to be assertive were all very important factors in getting the best health outcomes within the medical system.
Final Document Draft. Sept 2018 (in progress)
AFTER DIAGNOSIS – EMPOWERMENT STRATEGIES
How to navigate doctors, specialists and the medical system in general. Where to go for information and support. How to take responsibility for your own health.
The period after an initial cancer diagnosis is often confusing, shocking and scary. What follows is some information to help you navigate the medical system, your questions and your feelings.
Today there is a massive amount of information online that you can easily access, all you need is a few simple computer skills, but don’t worry there is also help available if you wish to simply talk to someone or read the information in a brochure.
Have a list of questions to ask your doctor/specialist. Take an advocate with you.
Before you visit your GP or specialist doctor it is important to make a list of questions to ask them, as it is easy to forget them when we are there; also take a pen to write notes about answers to your questions. Do not be afraid to ask your doctor anything you do not understand. You can also ask your doctor to write down information about treatments etc. It can also be useful to record the conversation with your doctor on your phone or similar device.
It can be very helpful to take a friend, partner, family member or support person with you to your doctors appointments as support and a second pair of ears, if only to help you remember all the relevant information after an appointment. This is a useful website about asking questions of your doctor.
If you are in any doubt about any information given to you by your doctor or specialist it’s important to know it’s alright to double check the information you have been given with a secondary source of your choosing and/or to get a second opinion. (Your GP can give you a referral to any specialist you request) A second opinion can give you more information and help you feel more confident about the treatment plan you choose.
Computer access and skills.
Access to a computer, tablet or smartphone is extremely helpful in finding useful information. If you don’t have one yourself you can go to your local library, internet cafe or find a friend who has one. If you are able it’s a good idea to get someone to help you improve your online search skills in order to find and evaluate the more reliable online information. Be aware not all online information is reliable or correct, especially from sources such as Facebook etc.
Look up your cancer on Google or equivalent search web site.
Simply doing a search on Google for your specific type of cancer can be very informative and list some very good websites. There are normally specific websites for specific cancer types. It may also be possible to find an online or email forum for your type of cancer, these can be very informative and supportive.
It is possible to set up your own notification system on ‘Google Alerts’ . This will send you emails with the latest information on Google about any topic you nominate, for instance ‘clinical trials for brain cancer’ . This is the web site address https://www.google.com.au/alerts
Cancer helpline for useful info and support
The Cancer Council telephone support line on 131120 has specially trained staff available to answer your questions about cancer and offer emotional or practical support and information.
See a psychologist or counsellor – Don’t be afraid to seek help from a professional to help you through the emotional roller coaster.
After a diagnosis of cancer it is normal to be overwhelmed by many different and complex feelings. It can be very helpful to talk to a counsellor or psychologist to guide you through this difficult time. Your GP can help you find one and even get some free sessions if you ask to go on a Care Plan. Here is a useful website. Feelings and Cancer
Remember, it’s your life, you’re in charge…….
Sometimes it’s necessary to be assertive with GP’s, specialists and nurses, particularly if you are not getting the treatment, respect, answers or results you need. It is perfectly ok to ask questions, ask people to repeat things and to question if your treatment is the best or latest available.
It can be overwhelming in certain situations and it is important to speak up if you need more information, or you are unsure of what is being discussed or done to you. Again a support person with you can be most helpful in these situations.
Organise help and support from family and friends if you can.
It can be difficult to ask for help sometimes, but it may necessary to ask your partner, family or friends to step up and help you.
Remember that your partner may be struggling to cope emotionally with your diagnosis and it may be necessary to get support outside of your relationship.
It can be really beneficial to get support from a local cancer support group if you can find one. (you can ring the Cancer Council to help you find if there are any in your local area on 131120 ) They can be good sources of information about local doctors, specialists and relevant medical knowledge. It can also be great to connect with other people with cancer who really understand what you are going through and can often help with helpful information.
There are many cancer organisations that can be useful sources of information and help. Here is a web site link for Australian cancer organisations. Cancer Support Organisations
Below is a list of useful Australian and overseas websites.
It is important to note that whilst Australian websites contain specific information relevant to Australians, overseas web sites may contain more detailed and more specific information.
Overseas web sites
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