Sunday, July 5, 2015

going through radiation: a breakdown + an oasis, and skin-on-skin advice

This week was the third radiation week for me - and it's also the hottest week of the year so far. Which caused a radiation breakdown, right when it was my turn. Here's the story, a copy of the original lines I posted in facebook that day:
"OMG... today is the day when it is sweltering hot, and I have that meeting in the city, and from there drive to radiation and arrive just in time despite traffic jams. And so I lie under the radiation machine, dreaming of the shower that waits at home. And then. that radiation machine. decides it is a good time to go dysfunctional. So I get up and out again, they try and fix it, then I get in again, lie down again... and the radiation machine is stubborn and doesn't radiate. And I think: please, just work for the 3 minutes it takes... but no. so I get up again. and they call the technician. and it will take 2 hours...
...and there I was, thinking they might skip today. but no. I will have to get back, for the next try."
I first thought I just wait there, but the radiation team suggested to rather go home, or to go to the "Oasis", which is the hospital cafe. I thought about it, and then decided to drive home, even if it would be just for a little while - I also suspected that fixing the radiation system might take longer.

It was so frustrating to be caught in that situation, and being alone and at the mercy of this mix of machine and technician, heat, traffic and luck. Being at home for a bit and having a snack and typing it out helped, and receiving supportive feedback really made a difference. Two hours later, I was back there again,  I worried that it would continue to be out of rhythm, with others waiting for their normal appointment + the delayed patients on top + the machine with problems: but they were well-organized, and managed to time it in a new way. But to my surprise, that second date worked out well. Such a relieve. (and I guess, they have experience with it and a “what-to-do”-manual). Here's the note I wrote later:
"Thanks so much for your supportive comments!! At first I really was close to either start to rant or start to cry, knowing that both is silly, but I am just so tired of waiting and of all those appointments. but good news: finally I am done for today! I just had to wait for some minutes when there, then it was my turn. They will have to work late though, up to 10 pm to catch up with the other delayed appointments. Now: shower. Then: Ice-cream."
The deeper emotion, and a natural mandala
What I also did after radiation: go for a walk through the nearby forest, to release the tension, and to have the feeling that the second drive wasn't just about that 3 minutes of radiation. Walking there, I went through the day again, and through my rush of emotions. It wasn't just the delay that was difficult, but the whole process of this treatment: this daily dose of radiation that helps to cure in invisible ways, but that slowly burns the skin a bit more with each session. Plus, this week I had met a fellow patient from chemotherapy at the radiation centre, and she is 3 weeks ahead of me - and she showed me her skin. It looked (and is) painful. "We'll get through this, too," we said. "It is just skin and tissue..." But of course, it stays in your mind, and brought another spin of going through rational facts and conclusions, to deal with the emotions and the worries. It's this ongoing twist of visible worrying side-effect versus the invisible long-term protection - just like i've written and reflected in the previous post: Going through radiation, or: emotions vs. logic, ghosts, that parallel world, and a hammock
"The difficulty is that most of those things are not visible, and beyond our ability to notice and feel them. Both chemotherapy and radiation happen on a cellular level - all you direclty feel are the side-effects. So from impression, it's the treatments that make you sick - the cancer itself didn't feel like it caused any harm, it was just there, a little lump of tissue. It's like a dark thing underneath the skin that was there, lingering, and after the operation it was gone - but the ghost of it is still hovering, and with it all the havoc it can cause. It's such a strange abstract illness."
It was good, to walk in the green shade. There even is a resting place there in the forest, with a wooden table and benches, and with a swing. Swinging in the air was just the right feeling of ease. And it was there that I had the idea to try and create a natural mandala. Here's where I arrived at - the first layer of the photo is the wooden table with the mandala, the second layer of the photo is the forest beyond:

The good things that were induced by that frustrating afternoon don't end here:

Just when I was walking back from the forest and arrived at my car, I saw a woman who I somehow recognized get in one of the parked cars - I walked up to the car, and yes! It was one of my fellow patients from chemotherapy. Such a nice chance meeting.

Finding an oasis
Then came Friday. And  with it the next radiation date already, in the late morning (Radiation is daily from Monday to Friday, that's why they were so set on keeping the dates, even if that means making a late shift.) Driving there, I hoped that things would go well. And then I emembered that piece of advice, to either drive home or to go to the Oasis. I got curious for it, and after radiation I went there to check it out, so that I know it, just in case. And it turned out that it's the most lovely place! It's on the far side of the hospital, and with a large outside sitting area:

I had lunch there, and the food was good, too. A real oasis! Now I already look forward to the next visit, and the timing is nice, too: I have a whole string of 11.20 radiation appointments, and then can go there to lunch.

Skin-on-skin advice
And here's a  more skin-related note on radiation: The third week of radiation is usually the time when the skin problems start. So far, my skin has some minor irritations, but it isn't itching yet. There are 2 spots that are red, and stay red, though. (so far, the irritations faded in the night. I looked for some more advice online, and the American cancer assocication has a page with good advice, especially about those areas that tend most to turn red. Now I understand why: because they are skin-to-skin-areas. And it’s excatly those two first areas that now turned red for me, too, just slightly so far, but it is good to get advice now before the skin gets more irritated. Here's the page: /

The advice isn't all easy to follow, though: “try to keep your arm away from your body whenever possible.” – how to do that? But then, while typing I could bend the elbows more. And interestingly, in my sleep I am doing that already, unconsciously: I woke up in the last days with my arms above my head. First I thought: how weird, is that from a radiation dream? (As that's the position you take during radiation: arms above head, in holding sets to be stable). But now it makes sense that  my body is moving instinctically into keep-skin-from-skin-position. Which is really helpful, cause you can’t control your sleeping position.. Also, the suggestion with the strong bra: they don’t have that listed in German advice pages, but it makes sense of course, seen from that point.

So far, I have 15 radiation sessions completed now, with 21 more to come. 3 more dates, than I will have reached the half-time-milestone. Then 2 more and I will have reached the next weekend, to recover. Step by step...

Previous Blog Posts
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