Progress, walks, family and challenges

Since day 6 I have been feeling that things are in progress. It obviously doesn’t mean that it isn’t still really challenging and that there are a lot of bumps on the road. But nonetheless progress.

On day 6 my platelets was quite low. The platelets or the thrombocytes are a component of blood whose function is to stop bleeding by clumping and clotting blood vessel injuries. On day 6 and 7 I thus got thrombocytes via IV-drop. Luckily the numbers quickly got better. On day 8 the thrombocytes-numbers went up from 6 to 20. The doctors are trowing numbers at me all the time and half the time I have no idea what they mean. Luckily both doctors and nurses are very skilled at explaining the numbers. So far it appears that everything is progressing in the right direction. I still don’t have an immune system, but we are getting there!

I still suffer from food loathing. I am getting by on protein-shakes, rice crackers with avocado, filur ice creams and protein ice cream. It is getting quite frustrating to loath food! I hope it’ll get better when we get home and Mathias and I can make the food that I feel like.

I having a lot of difficulties sleeping due to all the medicine. I wake confused up every or every other hour. I guess there is still a lot of medicine/chemo that needs to leave the body. The lacking sleep meant that I, on day 8, was super exhausted and had a lot of pain in my back and my eye (MS symptoms). In the evening I got sleeping pill, and even though I still woke up all the time I felt that I got a different kind of deep sleep. It was amazing and it meant that I had a lot of energy the next day.

It is strange. Sometimes I feel like I have quite a lot of energy, but still I am having difficulties getting an overview of things. It also means that that I have begun sending speaking-messages to friends and family on Messengers rather than texting. I don’t know what they feel about it, but it is a huge relief for me that I feel like I can keep in contact without getting too exhausted. It is, by the way, much easier to blog because then I can write quickly and in a flow rather than in scattered pieces.

On day 7my parents went home. They were not that happy to leave, but they needed to get back to Berta (the cute dog) and to my dad’s work. They have been by my side throughout it all and it took a lot hugging before they left.

Since I got the blood stem cells back it has been really important for me to work out. I have been lifting a lot of dumbbells and been on the exercise bike every day. I can fell that the hard treatment has taken a toll on my strength, but I am certain that I will get strong again. Yesterday, for instance, I was biking 9 km and walking5 km with Mathias.

Mathias and I are using our new freedom, where I am not attached to the Machine all the time, to go on a lot of walks. We have even had one sunny day! Yesterday we took a chance and went to a cafe! I have to be careful not to be too close to other people and their bacterias… I still don’t have an immunesystem. Mathias ordered a salad with goat cheese and when I saw that there were beans in his salad I suddenly craved beens. For the first time I had a craving! I asked the waiter if I could have teen beans and a bit of dip!  I could! And it was even on the house 😀

Today have been yet another day with long walks. But in the evening I suddenly got a bit of fever. This is critical, because I am really not supposed to get fever during the treatment. It is strange because my infection-numbers are really low and I don’t feel sick. But I means that I have to spend the evening attached to the machine again! I need more solu-medrol and even stronger antibiotics.

This ended up being incoherent rambling. But somehow it reflects the experience of being at the hospital for so long. They days tend to be an inseparable blur with numerous ups and downs. I am getting better, but there certainly are silly bumps on the road.


Mom and dad are by my side cheering me on!


Mathias got a bit sick himself, but he still gives the world’s best hugs!


My favourite dish! Rice crackers with avocado.


The day the sun was shining!


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