Chapter 36 Five years already….

Five years ago I was between life and death… If you remember… You still can read some of my first chapters so that you get a feel of the journey. Now I write this first part of the chapter on the terrace of a nice hotel in Tenerife where we spend Christmas with the family.

Stepping back back, now that I have this 5 years journey experience, helps to enjoy life even more than I used to before. I do it differently by realising how life is precious and that having family and friends you can trust and rely on is a blessing and we should really appreciate every single minute spent with them… I was so glad when a Rotarian friend told me that he was in full remission of his cancer… Let’s hope our community of survivors will keep growing and humankind will beat cancer one day! As one friend always tells us “do not forget to say I love you to the ones you love” this sentence may be less shallow that it may look like, life is short and love, fellowship or friendship are so important to achieve your goals in life that we should all foster these behaviours!

Having said all those nice thoughts, I must admit that scleroderma is no fun whatsoever! I now go 2 or 3 times a week to the physiotherapist to get some comfort but having indurated legs and forearms is a real pain to walk long distances. I do not even talk about immune suppressors and cortisone side-effects that keep affecting my wellbeing. I know anyway that it is for my good and they, the doctors, are doing their best for me to fully recover and guess what the other option is still not a good one!!!

So now I am ready to go to my monthly visit to the hospital and will then complete this chapter accordingly. This may result in a change of tone…

I learned today that a good friend of mine passed away and I feel bad being under the sun enjoying a break with the family and that I can’t even go to his funerals… He had a leukaemia too but apparently died from a heart attack… He was still fine when we met before Christmas! That does not help me, losing friends is always tough when you know that you have a similar condition… He will be missed and I’ll miss him a lot!

Ok here we go! Just back from hospital and in short, two main outcomes:
1. As my scleroderma is still progressing and my liver is impacted by the immune-suppressors… It becomes obvious that I need to go for the photopheresis which means that I become a unhappy bunny as it is time consuming and the procedure is not really friendly!
2. Some strange lymphocytes have been detected leading to further tests like bone marrow, pet scan, … But this is not AML striking back.

So it does not sound good and will need to spend more time in the hospital in the next coming months 😰, this is hard but seems like it is the only remaining way to get the GVHD out of my system… Not excited by the procedure but as usual, the alternative is too unpleasant and so as usual I’ll be a good soldier and comply! Let’s keep fingers crossed and hope for the best in 2015!

And as my friend who just passed away used to say: do not forget to tell the ones you love that you love them!

To Andre Rosemboom

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