“Fools, said I you do not know, silence like a cancer grows”

Controlling my body temperature

For those unfamiliar with Simon and Garfunkel, the title is taken from their song, “The Sound of Silence“. I used it for a reason,I hope you’ll see why later on.

For the past several months, I’ve been unable to control by body temperature. What I mean with that is that I always feel warm, unless it’s at most 16-17° C in my room, and have I no clothes on except a pair of boxers. I had one day a couple of weeks back where I didn’t have this issue. This made it easier to explain how it feels. It feels like I have a fever, but without feeling tired and never cold, no cold-sweating, or anything else you feel when running a fever. I just feel hot. I feel like a piece of uranium, going through its fission process, which has been thrown out in the snow – but instead of getting cold, it melts all snow, and heats up everything around it. That’s how I feel. There’s a limit, of course, but I’m not sure where this limit is.

This was difficult during the summer as well, but it didn’t feel as abnormal at that time. It’s always hot during the summer after all, as such having a fan on wasn’t unusual and it worked quite well. I’m sensitive to noise though, so I hate fans. Then there’s the draft; I can’t really have the fan directed on me directly due to it.

So, here we are, November 20th, 2017. Roughly this time last year, I’d quit with my anti-anxiety medication and my GP left me out in the cold once I took the last pill, the most difficult part of quitting with an addictive substance. And, he made no error in doing this, apparently. (Any sane person would say he did, including certain other doctors I’ve spoken with, who are experts in this field. However, doctors are given plenty of leeway in Sweden to be incompetent.)

But I digress. It seems that it’s been snowing all night, as everything is covered in a blanket of snow. Winter is coming… The temperature has been hovering around zero for a while. I usually only wear a pair of boxers inside. At 12-13° C I sometimes start to feel it and have to close the window a bit. My ideal temperature is around 15° C – with only a pair of boxers on. When it’s right above freezing, when I’m outside, all I wear is a long-sleeved shirt, a pair of jeans, gloves and a winter hat. As long as no body-part is exposed, I’m not wet and there’s no excessive winds, I’m happy with that. If I wanted to wear clothes inside, it’d have to be below 10° C. I imagine I’d need a sweater soon though, once we get lower than 2-3° C, or if it gets too windy outside.

People look, but they don’t ask

Why am I writing about this? Because people stare. A lot. I’m not sure what they’re thinking, but I’m sure some of them might believe I dress myself like this to seem cool (pun not intended). One woman confirmed this, she commented, mumbling, “Think having [essentially] no clothes on really makes you seem tough..?” I responded, with a smile, “No, but I’m a child cancer survivor who’s severely, chronically ill that takes 30-40 pills every day, and due to this, I’m unable to control my body temperature. I’m more comfortable out here where it’s two degrees than inside where it’s 20. Wanna switch lives?” Then I told her my name and suggested she Google it, because she obviously needed some educating in this area.

I can’t say why I’m experiencing these issues. It’s definitely a side effect of Venlafaxine, but I’ve lowered the dose to half and it’s not getting better. I hope it does when I’m free from it, but I also know that it could be permanent. I don’t know how common it is, but there’s at least one who’s got this issue. This is all controlled by the hypothalamus, and I’ve got endocrine health issues already. Still, I hope it will go away. Imagine yourself feeling like you’re burning up when you’re essentially naked, unless it’s colder than 13° C inside. It’s torture. Then, when I go outside, people stare. Thus far I’ve only had one derisive comment, but I’m sure there’s more to come. I don’t give a fuck about them though. It might seem like I do, but I don’t.

I realise the mere act of writing this could be interpreted as that I do care, but this post is intended to view this issues in a wider perspective, to look at the big picture. On top of this, I also know there are those who do care when people stare at them, and my hope is to strengthen them. What I do, and many other survivors who’s come to terms with their new selves, is to stare them right back, making eye contact. We have one person who actually goes up to people to ask if they wanted to ask something.

This is my point. We’ve reached a point as a society where people make assumptions, they look, stare, draw conclusion built on a foundation of ignorance. They may comment, but they never ask. Except children.

This entire thing always reminds me of this. (It’s in Swedish and I won’t translate poetry); you’ll have to use Google Translate).

Se på mig och tro,
tala med mig och lyssna.
Lyssna på mig och känn,
känn mig och förstå.

Children – the great inquisitors but also (sometimes) bullies

One kid, not very old, asked me why I didn’t have any clothes on, (other than the aforementioned attire). I told her that I got ill as a child, and that the medications made me ill. I asked her if she’d every gotten antibiotics, figuring it’s the most common, although I’m not sure. She said no, but her mother said yes, reminding her of that “disgusting liquid that tasted like bad strawberries”. She remembered, judging by her facial expression. She remembered how her tummy hurt and everything that comes with it. I told her that it’s the same as me, only that I had something more serious, and my “inner thermometer” is no longer working. This confused her, she asked many things something like, “Do we have thermometers inside us?” and “Where is it located? I explained that it’s more a part of the brain that is meant to control it, but it doesn’t work for me. I told her that the brain does a lot of things we don’t realise. I drew a parallel between getting sleepy and this. Getting sleepy, it’s the brain telling you it’s time to sleep, roughly the same time every day, sort of like a clock. Her parents didn’t interfere, like some might. She asked, and got an answer. Now she knows that some people are different and hopefully she’ll know that they might have a reason for looking, clothing or doing what they do.

I told this story at the CHCF-conference (the post for that conference is almost done, but it was a long weekend, lots of things happened and I needed a change of pace after writing six pages). I said that this is why I like kids; they’re honest and naturally inquisitive. They might stare, their parents might tell them not to, but they do, and they often ask. I feel it’s my duty to explain, unless I have a reason not to at the time.

Many people love children for precisely this reason, myself included. I did get another insight however, when speaking to someone else. He/she been bullied from second grade to ninth, because of his/her cancer and the treatment. His/her perspective was quite different. Kids ask questions, but they sometimes exclude and bully those who are different. His/her teachers made things worse. He/she was allowed to wear a hat inside; most knew this. Some didn’t though. One teacher told him/her to take it off, he/she said no twice, explaining he/she was excused from this rule, but finally he/she yielded, taking it off. He/she was completely bold, like cancer patients are. This teacher looked at him/her and moved on. Fucking pathetic excuse of an ass hole adult, partaking in the bullying of a young child. I’ll write more about this, because so incredibly many child cancer survivors have said the same thing, that they were bullied during and after their treatment all throughout grade school! It’s unacceptable and has to change. Some of these cases are relatively recent, as such I feel it’s still a relevant issue.

This natural instinct in children to be inquisitive, to learn more, may well also have a role when it comes to bullying. To me, this was an eyeopener; a different perspective of the same phenomenon in the inquisitive nature of children. Still, they have to ask questions, otherwise they’ll never learn, but we have to stop the bullying. The treatment is hard enough.

Update on my personal health – depression and loneliness

As for my current state of health, I’m a bit concerned again. I’ve lowered the dose on Venlafaxine, but I’m feeling strangely empty. Lonely. Though I’m not sure if it’s the depression or something else. I have two very close friends, but they’ve got work/university. I know many friends read this blog; if anyone I know, or any member from Ung Cancer or CHCF would like to come over sometime and watch a movie or play some games, you’re welcome over! (But message me first, I don’t want two hundred people coming over here at once. OK, it’s not likely to happen, but still it could. Also, I know this is weird, but it’s because I’m weird. I’ve said this before. Still, I’m not a psychopathic killer. It seems I’m a bit more violent than average, seeing how I do in fact hurt and even kill flies.) Anyway, my depression has improved a lot, don’t get me wrong here. I just don’t like it when it gets worse, even if it’s better than months ago. It’s a slippery slope. I do try to think of the good times I’ve had, like last weekend and beyond. Thank you all!

 

Maxa Livet Konferens, 2017.
From the Maxa Livet Conference, 2017. I was not blinking in this picture, I was laughing!
Maxa Livet Konferens, 2017.
From the Maxa Livet Conference, 2017. Joakim, loves food. A true gourmand!

 

 

Maxa Livet Konferens, 2017.
From the Maxa Livet Conference, 2017. Two lovely people, one of which I knew from previous events.
Me at home with Neo, my sister’s four months old baby. It’s only about 15° C inside so he needed a blanket. I also tried to warm his ears and head with my hands.
Got a hat for him soon thereafter though as he got cold. Lovely kid, always cheers me up.
My sister was unaware of the Matrix movies when deciding to name him Neo. She’s said she’ll have to actually go watch it now…

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