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.

Continue reading

How it all started – IV

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 123.

psfix_20190310_1948191240344933405517803.jpegLate 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

Medically busy day

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 😂😂😂 psfix_20190305_2352593451561770566914347.jpeg

This would be the second radiation treatment for meI 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

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.

Exercise in “taking it easy” at home

Do you know that I have especially fiery ants in my pants and was never able to take it easy? It didn’t happen when I came back from the hospital the previous time too. And you know, I’m very well aware of my situation and the condition I’m in, the consequences and chances. The aftermath and repercussions each day can bring depending on how I spend it.

psfix_20190225_0123394986240705272295098.jpegSo, the time had finally come for me to leave the second hospital. And I was planning to do better this time! By the way, both places were really great, especially the people who work there! But I’d love not to come back to these great places, as you can understand. Which means that at home I should be very careful, take little steps, do not overstretch my limited resources, be patient at least! So, the day I was going home was exciting enough and this time, I thought I would take it slowly and wouldn’t jump around!

Attempt #1

Everything was going smoothly. We got back home and met with our home care nurses and stayed home with no plans except for a dinner, nicely cooked by my husband and, maybe, a movie. Continue reading

How I got kicked out of the hospital

Oh, finally getting home after the hideous, almost two months long, overstay on a hospital bed, after some time, my brain started to work a little, and I realized that I totally forgot to tell the story, how about two weeks ago (already three, while I was finishing this post!) I was kicked out of the hospital I was in, and placed in another one till the end of my “sentence”! It was a shocking precedent for me, really! Why do they do it?

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At that time my Doctor at the “Hospital K” and I were discussing my possibilities of going home as comfortable as possible. Still, I was in much pain and it didn’t look like it’ll be safe for me at the moment, but we were getting there step by step. I knew they wanted to send me home as fast as possible… And I even applied for the Home Care services so there will be some help for me at home, at least at the beginning, if I were not completely able to take care of myself. And yet!

It was an exceptionally ill-suited moment, Continue reading