The 1st of May today and four months of the new year have seemingly evaporated. Sometimes it seems like yesterday I was considering the news delivered by the good Dr (who has disappeared from the picture) and sometimes it feels like an eternity (well that may be a slight exaggeration). Reflected today that I and those close to me have been dealing with this for almost 6 months. Little wonder we feel drained by this thing sometimes.
I had my mid cycle tests today and met with the small team of individuals that are managing my care. We chatted and a new drug regime was considered and will be put in place for my next meeting with the black bag. What is clear to me is just how stretched and disconnected the health care system can be.
Underfunded and more often operating in silos it can be very difficult to engage with it and be cared by it. Well meaning, well trained professionals working in conditions that I believe are unacceptable. This is particularly true of those involved in research.
I find that my care is pretty much one dimenisional. I felt after todays appointment a little like a “data point ” and not a complete individual in need of care. As I am part of a clinical trial pre determined aspects of my response to the cocktail of drugs are collected, measured and evaluated with great precision. However, there is no overall care plan that I can see that consider’s a more complete aspect of care which includes my diet, importantly my mental state, my broader physical response to treatment etc. etc I believe when dealing with something like this you do need to put in place a broader apporach to patient care that can access the skills of a more diverse set of professionals on a needs basis that are also experienced.
It appears to be left up to the individual to assess and agitate for whatever they feel is needed or missing and the system is not easy to engage with. Far from easy.
Anyway thats my view of it.
I felt better today and Petra and I had the opportunity to attend the girls school and watch Siena present her “Passion Project” which she has worked very diligently at for the past couple of months. It was a bit of fun and Siena was great. She was beaming – such a sparkly kid! Her project was stage make up in keeping with the performer in her. We have all been models for her as she practiced.
In the end she selected Alessia as her final model.
I also started reading the Cadel Evans book and noted a couple pages in it was from Cliff and Suzanne. Mystery solved and a big thank you!
My Unplanned Sabbatical 