Yesterday there was much time to sit wait and contemplate as I arrived early for my appointment. I could also afford some time to chat to the lovely ladies in the Living Room within the Macmillan Cancer Centre). We had the opportunity to discuss ” Especially for You” my new scarf charity and how and when I would deliver the first batch of scarfs and positive messages.
However time was obviously, not on the consultants side, he was running about an hour late. I think we eventually saw him for our 11.45 appointment at 1pm.
These appointments are much more about me passing information to them rather than the other way around so I can’t share with you great blood results this time. The important result, the one that measures the amount of cancerous cells in my bone marrow, I will find out on Monday. I shall have to wait in anticipation until I receive a phone call from Janet with the good news. ( No pressure Janet!)
There were a few changes that did come out of yesterday’s meeting though so just to keep family and friends (and whoever else may be interested ) in the loop here they are.
My dose of steroids has been cut in half. At the beginning of each cycle I take steroids for four days. Usually people are prescribed a dose of between 2-6mg but on the trial, in combination with other drugs, gigantic doses are recommended and have been found to be effective in hammering cancerous cells. However, these do have side effects, and it’s because of the deterioration of my eyesight that my dose has been reduced to 20mg daily.
I have also been prescribed eyes drops, more tablets for oral thrush and sleeping tablets.
I was a bit nervous about taking the sleeping tablets as the side effects include psychotic behaviour but I think I have escaped that so far. I did however get 6 hours sleep instead of my usual 3 1/2 so should feel really refreshed today.
Waiting for pharmacy took over and hour so we didn’t actually leave UCLH until 2.45.
On another note I received a great email from my friend and colleague Yael and I want to share 2 short video’s with you. The first fits in nicely with the education theme we were following the other day and secondly links in with that and discusses time.
Please take a moment to have a look at the them and let me know what you think.
They have certainly got me thinking and after some research and excitement of becoming a fellow with the RSA I am I exploring the idea of a new role within my organisation if and when I am allowed back (today I have an appointment with occupational health).
The RSA (Royal Society for the encouragement of Arts, Manufactures and Commerce)is an enlightenment organisation committed to finding innovative practical solutions to today’s social challenges. Through its ideas, research and 27,000-strong Fellowship, it seeks to understand and enhance human capability so we can close the gap between today’s reality and people’s hopes for a better world.
My aim is to become an RSA fellow and guide our organisation through change by using creativity and divergent thinking. No mean challenge.
The first thing I need to do is convince my chief exec that we need someone to do just that and that I am the best person for the job! He will then fund my fellowship and training and offer me a new exciting post or consultancy position freeing me up to share my creative skills and improve our community health services.
Don’t all panic there in Step2 I have factored in time for over-seeing the service but you’re doing such a good job without me I think it’s time to spread my wings a little wider.
So I have yet more exciting plans on the horizon. I will not, however, forget to enjoy living in the moment and am looking forward to chatting to David later. David is the guy who introduced me to that school in America that got many of you talking, and who is singing at the summer party.
Time is our most precious resource, use yours wisely today.