Resting day 1
Still quite a bump on the road, but I’m just trying to get through it. The day before yesterday I got the lung machine as an ‘extra accessory’ and yesterday on the last day of chemo I still needed the machine. Today I have a rest day and I also had an x-ray which luckily was good, but nevertheless the tube has to stay on for another day. Not comfortable, because I have a lot of pain in my shoulder. It is now the 3rd day with that air hose in my lung and they have already promised me a few times, “tomorrow it can come off”, but that has been shifted. In the meantime, I had become scared of the lung machine, so luckily it was released today! 
The thing was, every time it took me quite some effort to become painfree and then all of a sudden, maybe I moved too much, I got a dent in the air tube or something. The result is that my lung get’s a blast of extra air from that machine. As if your lung gets blown up in one go. Horrible! And extremely painful! So bad in the end that I asked if that machine could be disconnected today. The tube itself is not allowed to come off yet, so I now have an alternative glass bottle next to my bed to which the air hose is attached. Currently that glass bottle works as my ‘surrogate’ lung and that seems to work. In addition, excess moisture can still be drained. I feel a lot more comfortable with it anyway. Although I have to admit…. it kind of looks like “Pat & Mat” (from the children’s tv series) have helped me with surgery instead of actual doctors, haha!
In the evening I couldn’t help myself going over the corridor with my glass bottle looking for my ‘stem cell sisters’ for a nice cup of tea. 🙂 The photo that Philippa took of me is actually quite hilarious (see gallery below). It was anything but practical, because lifting the glass bottle off the ground was again a ‘thing’ because bending over made sure that the air went into my lung incorrectly and that hurt again. In short, afterwards I asked the nurse if she could lift me the bottle off the floor and put it back in my hand so that I could wander back to my room. Haha! Let’s just say… I took a lot of effort for a little socializing with fellow patients! I have lot’s of time to rest and stay in bed while in iso. 😉
Extra Rusting day 2
Okay, so the countdown is no longer completely correct. I have been given an extra day of rest and the transplant day also shifts to Wednesday by a day. So for me a second time to say ‘it’s day minus 1’.
Grumpy
It is starting to annoy me so much that I need assistance with almost everything because I cannot move without pain. Today was the first day that I was incredibly grumpy. I thought for a moment that I was completely getting frustrated, but that was purely due to the movement restrictions due to the fact that I am attached to that glass bottle with that lung hose. After 4 days of pain on my right shoulder I can no longer use my right arm and with the left one I have to lift and carry the glass bottle, which means I no longer have any hands free. Quite a hassle, nice for a while, but like I said, today I was sick of it. The day starts here around half past six and I see that I already sent a message to Simon at 8 am asking him to come to the hospital as early as possible to help me: “Really so frustrating that I am bed-bound. I’m tired of this glass bottle. Now there is a pair of scissors hanging onto it that pinches the hose and that has to stay put? Going to the toilet is tricky, I can’t reach my food and drink, I can’t get dressed. The light switch above the bed is too high. I can’t even wash my hands without hurting my lung. Just really annoying. Help, please.”
In short, those minor things are annoying. But at the same time it is also a reminder of how bad I have been in the past during MS flares, so it is also a motivator to continue in this process that we are currently working on. Let’s make this effort so that hopefully this kind of need for help won’t be a permanent situation in the future.
Removing the air tube
This morning on my 2nd day of rest, Simon quickly came to help me and he washed me in the shower and dressed me. Fortunately, I already had an x-ray in the morning to assess what the lung looked like. The x-ray was good again and around noon they FINALLY took that miserable pinky-thick air hose from my lung. Simon was allowed in the room when it was removed. When I looked at what was under the bandage, it almost looked as if the tube was sewn to my body with dark blue fabric sewing thread. I was not allowed to watch anymore when they actually pulled the hose out of me. They did this while I was exhaling. I understand from Simon that the part of the hose that came out of the lung was at least 10 to 15 cm long. No wonder it bothered me so much… It was almost literally ‘a stab in the back’. A few hours later I had another x-ray and everything looks good. So many x-rays in recent days! They are difinitely thorough here. Now that the tube is gone, I am finally released from that hellish pain. Yay!!
Let’s go outside
And it is going well again! Wow, what a difference when the ‘pain’ factor is no longer an issue. And oh, let’s just laugh at it one last time; in the gallery is a beautiful photo of me last night with my glass lung. Haha! Today we have the first cloudy day here since we are in Moscow, but that should not spoil the fun so let’s go out into the hospital grounds. Fresh air! Finally outside. I feel relieved and good. Tired, dizzy and nauseous, but what do you expect after 4 chemo days (and a pneumothorax and surgery not to be forgotten). Simon has rebooked his plane tickets and flies back to the Netherlands a few days later. He first wants to wait a bit until I am safely in isolation. He wants to stick around for a little while just in case something goes wrong.
Tomorrow transplant day
And then we will immediately go “back on track” tomorrow. Tomorrow morning Simon helps me move again one last time. Earlier I went from room 409 to 231. This time I stay on the same floor just a few doors further to my future isolation room in the transplant department. I am moving from room 231 to room 229. Then I have to stay sober in the morning and I will have the stem cells transplanted back to my iso room in the afternoon. Exciting! Because I had an extra day of rest, I expect that my blood levels will already be very low. So I expect complete isolation very soon!
Tomorrow is the day, let it come, I’m ready!
Click on the images to open the gallery including explanations:
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