This month I had to skip 1 week for the photopheresis as I was abroad for 3 weeks in a row… Of course I did get clearance from my haematologist first but still, I did feel a bit anxious about it! Now, I must say that having such a break in the treatment is fairly great and sure it helps my veins to heal and my overall body to de-tress a tad.
The heatwave that did hit us, fortunately, did not impact me that much beside my feet swelling a bit but not to be compared with how I was in 2013 as you could read in Chapter 15. Actually, I feel intellectually sharp and physically ok, not ready for a marathon but I can have a normal life, driving 600 miles at once or do a city visit with smile and interest.
I do really feel the progress and must say that even if I was reluctant, the doctors were right to keep working on convincing me to go for this treatment… So if I may make a recommendation here, go for it if it is offered to you! Be aware that if it is part of the first line of defence in the USA, in e.g. Belgium it is still under a study umbrella i.e. not many are benefitting from this yet! Which also means that my case is severe enough to be enrolled in the programme so good or bad? Good question!
I just spent 2 weeks in South of France and 1 week training in London and I must say that despite some cramps I do feel ok. Waking up at 4AM to take a train was no issue, driving back from Vaison-La-Romaine at once was no problem and I even won the quiz at the end of my LEAN training so all good! I will now enjoy a couple of weeks working from home including some photopheresis to feel even better!
Talking about photopheresis, am now spending one day in hospital for the treatment and I must admit I was not missing at all! The challenge is always when you feel ok, you tend to also forget about the pills and all you don’t like… But it went well and am looking forward to being early August to measure the impact. That will influence my holidays! 😱 I hope that in the next evaluation in September I will hear that I may only go once a month instead of twice… I keep my fingers crossed. But before the September evaluation we have the August visit to the haematologists… Getting closer to that point everyday and just back from my first photopheresis date and I still do not understand why it becomes more and more difficult to get needles in my arms!
So here you go, had my visit and all went quite well, most lights are green 🙂 except my sugar level but one extra pill should do the trick knowing it mainly comes the cortisone I still have to take. I will keep my photopheresis on a fortnightly basis for the coming 3 months as the results are still positive and the scleroderma is basically under control and even decreasing… I can really feel the difference and it helps a lot!
I feel now ready to go on holidays and enjoy family time… I feel blessed and I thank you for your support!