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.
My tough adventure continued.
After I finally came to the Hospital K (you can find in Part IV), and the nice nurse made it happened that I saw my husband that late at night, he brought me some stuff from home, even though I received everything possible from the hospital at the moment. We talked for some time, I brought him up to speed as much as I could, we separated till morning.
My state was still of absolute shock and lack of understanding of what was going on with me. I was in a hospital gown with lots of cords coming out of me, three of them at least connected to some bags, not in a way you’d think they would, they appeared to be to the cuts under the lungs and the heart sack for collecting the rest of the liquids, and some to this beeping machine, I saw in the movies before %). Meanwhile, nurses brought me some broth and tea, and a small sandwich and tried to persuade me to have at least some.
Later, when I ate some broth, seeing that I was still in the complete state of loss, nurses tenderly but firmly helped me to get to sleep, and repeated many and many times (and were right to do so) to call them. Call them if I need to stand up or to go to the toilet or if I’m thirsty, or need anything at all. Because it worked and even in my groggy painful state during my sleep that night, I remembered asking them for help.
In the morning I had a chance to finally look around and see, where I was. The room was quite spacious with my medical bed and a type of “medical” table beside it. There was a nice area with the light azure armchair with footrest and an extra chair. And there was some cabinet, which appeared to be the extra bed later. The windows were huge, almost wall-size, and the ceiling was quite high too. There was a door, which I knew was a bathroom after the last night. Everything looked perfect and clean and shiny.
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.