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.
As people who surround me know, I do, or at least try to, stay positive!
I do not google (more on that later) not to see bad stuff, but I do hope, make plans and do stuff on the days when I can, or not 😜😜😜 I move from the day to a day trying not to focus on the depressing stuff. Of course, there are moments when I cannot stop thinking about it and I feel scared or sad for a moment here and there. At times like this, I try to get these feelings out. Get it out, do not keep them and then fill the mind with the positive things again. E.g. do “think of three positive things” exercise, which I wrote about earlier.
I do think that it is really important. Do not allow all these hard feelings to go over you. Because, if you just sit down, give in and let them – they will consume you, overpower you and devour your will to go on.
It is also really important for the people around you – your beloved ones, relatives, friends, and people who care. Recently I called my grandmother and when she worryingly/cautiously asked me, how am I, I said good, and she repeated in disbelief – good? But yes, I was good, I felt well this morning, and it was enough for me. We laughed! And laugh makes us live longer 😃
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
Last Friday I woke up quite late, I’d taken my morning medicine being half-awake and went back to sleep, and what’s more, I wasn’t woken up neither by fever nor pain (Hurray!).
Afterward, my dear husband made me a breakfast of omelet with bacon and spinach and cherry tomatoes.
One of the exciting things for today was that our friend was coming to visit us today all the way from Germany. It’ll be a short visit, but a rare opportunity! So, while my husband was meeting him at the airport, I gathered all my strength together and went for the shower! If you have been lying on the hospital bed for the two months with very limited capacity to move, you’d know what I mean. I literally gathered all my strength and went for the shower. I even washed my hair. But I tried to be very quick to get out.
What a feeling of accomplishment! And a smell of my favorite shampoo! 😁
I was ready right in time, and we had a great one-and-a-half-hour coffee! Continue reading
Some time ago, somewhere in October or November last year, already taken by the storm of my disease, I saw a post in Instagram @Allthingsgreen by Maria Bååth that when you have times when you feel sad and unhappy and life just passing by. You need to stop, take a deep breath and think of three positive things. Just three! It was soooo hard for me, you can’t imagine!
Just three things, that make me feel better, happy, no matter how sad and lost I felt because of the things not happening to me at that moment. I couldn’t do it with the first try, but I tried again the next day and the day after. Who would have thought, that it could be such a difficult task? Or was it just for me?
Now it’s much easier to see these positive things and it became much easier to seize small moments of happiness every day, no matter how hard it could have been.
[A small moment of happiness from the time I was in the hospital]
I’d love to tell. I felt happy. Just purely simply happy at that moment. Even though I lie in a hospital bed, have just taken a handful of pills… But we were lying beside each other and were sharing small fun things from the Internet, which we were finding at the moment, like cute cats and pictures. And it’s so stupid and normal at the same time, and so amazing!
These are my small specs of gold, of my everyday happiness.