I know it has been now 3 months that I have not been communicating via my blog to update you on my health and other experiences in my life. I must say that there are lots of things currently happening. Indeed I talk about my 3rd life as you know that my first one ended November 21st 2009 with my Acute Myeloid Leukemia and February 9th 2016 with my car crash you could read in Chapter 51. So you may imagine how I can now see things from a distance and do prioritize differently :-).
First of all, from a health perspective, photopheresis is stabilizing my scleroderma (see small pictures below and be aware that I am much better now 🙂 and these are not picture of me… never been that bad actually) and I still hope that we will be done by year-end. This means that improvements have been dismal in the last couple of months 😦 BUT huge improvements in 18 months so I do persevere. This means of course that I still need to go to hospital 4 half days per month but it is really worth it. I am pleased to see that I only go to the hematologists only once a quarter showing that general health is quite steady with my 24 pills a day :-).
The latest is really that I need to visit for my emerging diabetes as this will be my next hurdle I anticipate… Let’s hope it is not too severe and we can cope with all this new challenge.
I did also progress on my commitment to Lotuz and participated to their symposium. I am currently putting together the needed information, contact points, structure and funding for building a community in my hometown CHU for people who will get a bone marrow transplant or had one. The objective being to share information, develop events, involve specialists and pharma companies to better support my fellow transplanted folks.
This is a real challenge ahead as even if there is some help coming from Lotuz that is 1 year old, it is totally unknown in the south of the country i.e. it will be a green field in that sense but I am working on getting people ready to volunteer for it and this is clearly for a good cause.
I am definitely looking forward to manage this new project outside my domain of expertise but where I can find people with enthusiasm and a strong will to deliver to enable an easier life to others.
Luckily I just ended my second presidency of my local Rotary Club and so will get some time on my hands to both build that community and be in charge of the Youth Exchange Programme in my club i.e. taking care of 3 students going 1 year abroad (USA, Australia, Brazil, Japan, …) and 3 joining us in Belgium from anywhere in the world.
Of course, through my club, I’ll keep working on funding research against cancer and AEC organisation that supports children with cancer.
So as you can read I still have great projects in front of me on top of the exciting days in the office and a rewarding family life with my 2 boys and lovely wife… I’ll never thank them enough for all the support they give me and the courage to keep going through my long recovery journey!
As you may have seen in Facebook, I am still traveling and have fun with the family and did enjoy a week in Barcelona and kept enjoying good food as well. That makes me think that I may open a new segment about travel and food in this blog… I know that it looks like another project but I do have so much material that it may be helpful for some as well if I do merge my Facebook and my TripAdvisor inputs. I guess I will need to soon prioritize these and do some strategic portfolio management…
This is my quarterly update and if issues are raised in my next quarterly visit with my hematologist next week, you will be the first to know :-)…