When I was first diagnosed I found that there was both too much and too little information about my condition.
Minutes after being faced with the diagnosis of breast cancer I was whisked off to see the Macmillan nurse. I felt overwhelmed by the amount of information I was faced with. The leaflets I was given were certainly very useful, so I could read up on everything later when my mind was in a better state.
The good news is, you can always go back to your clinical nurse specialist and ask again if you didn’t understand the first time.
Like a lot of people in this situation I went online to search the Internet for information on my condition. It was very confusing and scary as a lot of what I found was simply not applicable to my specific sort of cancer.
If I was to start again, I’d stick to the very knowledgeable and helpful cancer information sites like www.macmillan.org.uk, www.cancerresearchuk.org and (for breast cancer patients) www.breastcancercare.org.uk. The NHS also has a very informative website detailing information on conditions and treatment: www.nhs.uk/Conditions/Pages/hub.aspx. I found it very useful.
If you search online for “medical dictionaries” you’ll find a number of online dictionaries that will explain the – initially baffling – terminology.