I returned to Holland on Christmas eve (got an upgrade to Business Class on Emirates for the first leg so had a very pleasant journey). It was wonderful to see Victor again after 18 days apart. We spent a quiet and relaxed Christmas together.
During my holidays in Malaysia I was able to join in the discussion organized by Kim, a very inspiring Ph.D. student in Professor van Weert’s research group. I really enjoyed the discussions that took place (anonymously). It made me think about my own ambitions and ideas.
I’ve come up with the following new year’s resolutions:
- To write one or more books about my experiences
- To set up a social network for people living with cancer (mostly stage 4 patients but anyone who wants to can join)
- To finish my fiction novel and (screen)plays
On January 4th, we went to our friend N’s house for her baby shower (and b-day). It was great fun. She sent me a link for a writing workshop and I signed up right away. In February I’m following the novel workshop and in March the “From Blog to Book” workshop. I spoke to Lisa who organizes and leads the workshops and I’m really looking forward to it.
This past week I started working again, but mostly I’m thinking about how I can make a difference for other people living with cancer. I spoke with a top oncologist – who is a good friend of one of our friends – this morning. I intend to solve 2 problems: getting patients with metastases the information they need and making information about treatments available to this group.
He suggested that I connect with other people and organizations. He mentioned that it seems that most patient organizations are not very effective in making changes. He also explained to me that the treatment that saved my life (Mitomycine-C) is not commonly used anymore because studies could not identify for which patients treatment would be effective. Sometimes it worked and sometimes it didn’t. This world-famous oncologist told me that if I had come to his hospital chances are I would not have been given this particular treatment. I replied: In that case, I wouldn’t be here now talking with you then. He informed me that one of the reasons patients don’t get the information they need is lack of time (average of 7 minutes per patient at the regional hospitals and 20 minutes at the national cancer center AVL). A second reason is that there are a lot of rules for research studies (set by national government, European Union and ethics committees) which prevent the right information from being shared.
My own oncologist had told me that it worked between 60-80% of the time.
So I’ve decided to focus on patient advocacy and empowerment. I will also try to focus on these topics in my research, but I intend to do the research primarily to support this goal. So far I’ve read some publications and formulated my research questions. I intended to do a content analysis but am still looking for good tools to automate the content analysis, so any tips are most welcome.
For now, best wishes for all of you for a wonderful 2014. I will report back next week after my checkup at the AVL Hospital.
Here’s a quote from brainy quote:
Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.
Helen Keller
Read more at http://www.brainyquote.com/quotes/topics/topic_newyears.html#VwJza6IXL0Fh27Dw.99
Sheila Ghosh - blog 