As mentioned in the previous chapter, I do indeed feel better and we see some progress and I feel better. Current pattern is one week abroad and one week at home including two days for photopheresis. Even if it may look heavy, I really live this nicely as I can enjoy the benefits of the treatment, only issue is that the more I go to the hospital the less I like needles! At the point that I had a vasovagal syncope issue last time they needed to test my blood for flu… I know it sounds ridiculous knowing what I have been through but here you go, can’t help it my brain is kind of self-protecting.
I must admit it is fantastic that I can have still projects for me and the family and also have some nice activities… We spent last week-end in Brussels for my father’s 80th birthday and could surprise him with a suite in Hilton Grand Place and superb dinner in Comme Chez Soi! It was so great to see happiness in my dad and mum’s eyes… I am so blessed to have lived that moment with them. When I look at my May calendar, it will be really interesting as it will be a nice mix of private travel in my wife’s family in Normandy, bringing my old son back from Oxford and professional with PMI Congress in London and of course The Hague. Cherry on the cake will be a golf competition for research against cancer organised by my Rotary Club.
Being just back from hospital, it looks like my scleroderma did stop evolving and even reversed in some places…. Eyes also getting better and result from blood test are good. Sugar level still high but as we reduce the immune-suppressors, that should decrease soon too! So let’s keep doing the photopheresis and get back to normal for whatever that may mean. Looking forward to sharing more in June. 😀