Looking into the mirror

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.

psfix_20190412_2103225227825809639268872.jpegIn 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.

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Pill duty

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.

psfix_20190404_1413537517216738275059006.jpegWhen 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

Feelings…

So, I received my diagnosis, it’s hard to process emotions like this.  

psfix_20190402_0210488380577024003297119.jpegFor 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.

Stay positive

As people who surround me know, I do, or at least try to, stay positive!

psfix_20190318_0013167240732797990494495.jpegI 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 😃
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Radiotherapy nr 2 – week 1

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.

psfix_20190313_0115476818639906821201819.jpegBut 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.

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A tiring but great day

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.

psfix_20190304_2147416748312751974124868.jpegOne 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

Little specks of happiness

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!psfix_20190227_2354243212571839364044697.jpeg

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.