We are trying to find a routine in our daily life.

Although every day start the same, there are distinct differences which leaves us with mixed emotions.

Monday is Immune Therapy day

Monday is the only day in the week the alarm clock is set. Bart needs to be in the hospital at 9:00. Needless to say that Mr Van de Walle is a real Boomtown Rat and the good morning I receive is one with anticipatory anxiety. Like a boy going on a school trip, packed with his lunch and medicine, we leave at 8:15 for the 10 km trip. Avoiding school traffic and anticipating traffic jams on the Brussels Ring. This week a new medicine was added to his Immune Therapy. His white blood cells are up to 5400, about half of what they should be. His weight is up 3 kg. (The Cookie monster has finally shown his true colors.) Hematocrit is still a bit low.

Every Monday, we are happy the values go up. But the doctors always have a warning. Yes, you are doing great but be aware that a relapse can happen at anytime. Yes, you are doing great but keep up the calorie rich and bacteria poor diet. If you get an infection and have to come to the hospital, you will be sooner in the ICU than you think and in your condition, we don’t know if we can pull you through.

It seems that every time, they put the fear of God in you. Not a very nice feeling, but it does keep us in check.

Tuesday & Wednesday are days to quickly forget

Bart mostly sleeps on Tuesday and Wednesday. This week however, he was hurting in his bones, due to the additional medicine he received on Monday. He had pain whatever he did. Walking, sleeping, sitting, it all hurt.

Thursday comes after Wednesday

On Thursday, I start seeing the flashes of the old Bart. He cracks a joke now an then. He also started watching the cycling races on TV. Something he never did before. It seems super boring to me. If it’s not cycling it is CNBC. He watches the rise and fall of the stock market hours on end. Now this is ultra boring to me. I didn’t study Economics, maybe that is why.

Friday is the beginning of the weekend

He’s back. Bart in full force. Joking the whole time, going for a walk around the block. Having physio therapy. Trying to organize my life. (I write trying because whatever he says, I just do my thing and ignore whatever he says). Friday is also the day he shaves. His hair is starting to grow back (the hair he had before the chemo. What was lost, stays lost). Funny enough, his moustache is still dark but all other hair is white. If he would let it grow from now on, he will look like Father Christmas in December.

The weekend

This is the best time of the week. No more side effects of the Immune Therapy. Kids are at home and keep him occupied with their accounts of what happened the previous week. Every time he gives them good parental advise, trying to be implicated in their lives. They mimic me and ignore him and keep on living their lives the way they want. Which is actually no change from before he got sick. A bit of normality and continuity in our lives is a good thing.

We have had some short but meaningful visits from friends and family.

Although doctors keep insisting, the road ahead is still long and he isn’t out of the woods yet. We try to make the best of what we are dealt with. It would be boring to make lemonade when life gives you lemons. At least when you make Limoncello, you can enjoy a hangover.

Happy times.