I started my blog the day after I was admitted to hospital with a diagnosis of ovarian cancer in December 2009. I hoped it would be a way to let people know why my family had suddenly abandoned our plans for the summer holidays. My hospital treatment was in the capital city, 2000 kilometres away from home. We were scared and stressed, with no time for chatting or letter-writing. Bad news travels fast and I didn’t want everyone to suffer extra worry on account of not knowing my latest progress, especially at Christmas time. All I had to do was ask my clever son and daughter if they could help me use Caring Bridge (a platform designed for health updates) and they created a website for me in next to no time.
If anyone ever wonders how to cope with serious health challenges, I think the answer is all about connection with wonderful family and friends!
My blog became important to me because it is the way I have been able to keep in touch with my dear family and friends even though I was far away. The connection via the guestbook and email replies also gave me immense support which turns out to be significant for my healing and coping! I cannot emphasise this enough that my “journey” has been shared with cherished people and my success so far is something we have done together.
GUESTBOOK ENTRIES as AUDIO AFFIRMATIONS
My sister, Janet, is full of the most fantastic ideas to help me! Here is a brilliant thing that she organised while I was very ill and unable to sit up and read the comments on my blog. The family read aloud the written get well messages and made an audio recording. At first I was in and out of sleep while listening, and then I had these beautiful personal affirmations on my mp3 player to listen to whenever I wanted. (I’m mentioning this, hoping it will be something we can all remember as an idea to help someone who is stuck in hospital.) Those loving words were surely a very healing gift. No wonder I bounced back in health! Thankyou and thankyou again for writing to me (then and since).
I appreciate that many people feel more private than me when they’re in a crisis. I write openly about my feelings and try to include my sadness and fear as well as joy and hope. It is all I know, but also I’m conscious that people have found some value in reading my story because it helps to demystify a lurking terror (cancer). I love these words from Teva Harrison, “… it is the unspoken that is most frightening. Shining a light on my experience takes some of the power away from the bogeyman that is my cancer. I am taking my power back.” In Between Days.
I also try to explain the biology of what is going on for me. (Hopefully my descriptions are not too gruesome!) I gain hope from understanding what the doctors are trying to do. The passion and caring of the medical team is obvious, the more I learn about the various strategies for tackling cancer. With my science background, I am very interested in research and I put my trust in evidence-based medicine.
Thanks to Caring Bridge for hosting my blog for 7 years. It started off well and I have had thousands of ‘visits’, but recently it has not been ideal. The settings changed so no one could read my CB posts without having a password to log in. Sorry for those of you who found it off-putting. And I’m embarrassed that Caring Bridge has been asking for money on my behalf!
You can find my full diary going back to 2009 by scrolling down through the alisphere posts. If you want to start from the very beginning, find the first post from 21st December 2009, then read posts in reverse order to take in the story chronologically.
In case someone needs a different format, I have collated the old posts in 7 pdf documents, one for each year. Find the pdfs on the yearly summary pages. However, I recommend you browse the alisphere to read my story (not with the yearly pdfs), because here are lots of pictures and better formatting most of the time.
If you know someone who has been diagnosed with ovarian cancer, please direct them to this blog. I would love it if my experience can help others in some way. Since I passed the 5-year milestone, I’ve been aware my story can give some hope to new patients facing this horrible disease. And now I’m getting to be a bit of a veteran (in my 8th year), there possibly may be some useful information in my journal after I’ve tried so many of the medical options.