Some time ago, at the very beginning of February, like a couple of months, at the hospital my oncologist visited me. I was feeling pretty nasty and I could tell that he was not bearing any good news. First of all, he gave me the new medication with his hands shaking – Lorlatinib was a new drug for Sweden and we got it! Pretty good thing! He had good hopes for that, why the long face though?
Then he said that he needed to talk to me about one more thing. That now in my medical record there is a special mark, which means that I’m not suitable for being resuscitated. My body is so much exhausted and damaged by the illness that I won’t be able to take the procedure anyway, or something like this… I don’t remember because there was some ringing in my ears… Somehow I was so shocked and offended by this news that almost started to cry. I was worried that my parents won’t be able to come to say goodbye! Yes, by the way, he said, maybe it’s time for you to have your parents come.
Here comes louder, more ringing, more annoying, I can’t hear! I freaked out quite a bit. But It was probably one of the most important things he had to say that day. I needed to understand more deeply the severeness of the illness I have and it was the way to tell it for the doctor, since he couldn’t directly, as far as I understand.
Since I’ve got the diagnosis and started the treatments my appearance has changed drastically… When I pass the mirror, I can not recognize myself, to tell you the truth, and when I finally do – I get upset. I do not look like any of my pictures, and I do not think that authorities will recognize me on the documents if needed.
In the very beginning, before my first visit to the doctor, (Oh, so long time ago!) I lost a kilo or a bit more and were very satisfied! I liked how I look. But then, with the treatments or something, my face started to look a little bit swollen. After a few months, swollenness became so ugly, that I looked like I was drinking badly for months and months, and you have just woken me up.
Did you get the picture?
Even when I got back to Hospital K after being at home for some time, some nurses asked me – “You didn’t look like this before, right, not that swollen??”
No, I did not.
A bit later, when, the liquids (I assume) redistributed themselves, my face started to look a little bit more normal, less sick swollen, and more just fat, I think. So now I’ve got two huge chicks, second chin and everything that supposed to come with this in between. While the forehead started to look small and lips are just almost non-existent.
To give me my tablets, to control that everything is in time, to check on availability of medications at home, injections, solutions, drops, somehow became my husband’s duties by default. And he zealously takes care of these Pill Duties and me.
When we first time came from the hospital with the new diagnosis and basically the new life ahead of us, we created a small daily routine with blood pressure and temperature tests and pills that he was giving me according to the list. And this routine continued for quite a bit.
Much later, with two more hospital visits, where the nurses do this, and we got all good blood pressure results we stopped taking measurements at home on a regular basis, but the Pill Duty stayed on my husband, even though with the number of pills increased enormously and different timings became crazy. Continue reading
So, I received my diagnosis, it’s hard to process emotions like this.
For some time, I think I felt nothing. I was just talking, functioning and not feeling anything. I was like frozen. Because I was afraid, that if I let go, the feelings would be too much, what if the urge to cry will be too strong. I didn’t want to freak out. But I think that having a plan helped, the thing is that I immediately got a promising treatment – gave me hope, strength and ability to rationalize what was happening and the diagnosis I got. I did process my fear too in the end step by step. And I cried too. But much later.
So, last Saturday I went through the second session of radiotherapy. It went quite well, as you may remember, and I just had some pains at night, but a small dose of painkillers helped.
But the real problem with radiotherapy, which I found out in my own experience, is that it’s fine the next day, and then it’s getting worse, worse and worse into the second week. Really, really bad in my case. For the last week I have experienced different variations of pain, such as light day pains, when they are hardly noticeable (especially if your mind is occupied by something); ghostly light night pains, when they are not waking you up but make your sleep slightly uncomfortable so, that it takes a lot of time to recognize it, wake up and, finally, consciously do something about it.
So, we are coming to the point little by little. I was holed up in the StG Hospital for hours now, with nobody knowing what’s going on with me, and keeping me under quarantine, just in case. How my journey started and how I get here you can read in previous parts 1, 2, 3.
Late in the evening, a nurse came in and said that finally X-Ray department has found a drop-in time to do a CT, – that’s what we’d been waiting for, I realized! And arriving there in my cot, I saw the previous patient being driven out. So obviously, the schedule was tight.
It was the first time, I have ever had a CT scan, and I saw the equipment! For me, it was not scary, more like very interesting! They gave me an intravenous contrast, which felt really hot in some places, hmm, fun! And I do not remember now how much of the scan they did, but it was head and thorax and may be abdominal area too.
After the CT, I got back to my really comfortable quarantine. To wait some more. Finally, a couple of doctors came and took ECG, and it seemed that they didn’t like it much. Because they came back with an ultrasound machine and did the ultrasound on my heart and I remember the main doctor saying “Here, the dancing heart”. I didn’t quite understand what it meant, but after that, the world around me changed from slow-mo and waiting all the time to rushing forward on high speed. Continue reading
Another day, that’s good, right? This one was expected to be more medically charged.
Saturday I was going to the radiotherapy in the morning. I find it strange that such procedures are scheduled on weekends, but who am I to judge. It was also pretty early in the morning and probably after the active day before (and, I swear, quite an early bedtime) I had an incredibly hard time to wake up. It’s good that thanks to my man, the only things I had to do were to eat my porridge and get dressed. I found myself awake in the car only. No wonder, since every get-away from home for me now is like a school trip for a kid 😂😂😂
This would be the second radiation treatment for me. I hope to tell you about the first one in the “remembrance” part of my blog. But I could tell you now, that it didn’t go well and made the pain so much worse, that I ended up in bed for weeks. So, this time everyone, myself included, was really worried about how my body would react.
A nurse met us and explained again that it could be worse after the treatment, for a few weeks, but it would be better in the end. The procedure went uneventful, and so, the first test of my well-being would be whether I could sit and stand up from the bench of the apparatus itself. The test, which I happily passed! We got home without any troubles too, except that I felt dizzy and threw up a bit, but again, it seemed to be a normal reaction for me. It was a good start though, but just the same I was waiting for something to happen for the rest of the day and moved around like I was made of glass… Continue reading