So as it turns out its been three weeks since my last blog post. Dont panic! I'm ok. In fact, right now I'm probably the best I've been since surgery.
I'm not sure how it got to be so long since my last post. There was chemo, which was a little nastier than the last round despite still being just one day sans nastiest chemical. I think the nastiness came about because I was still doing better physically, but still very tired. As a result I went a bit stir crazy. The worst part of recovering this round was, apart from the fatigue, that I spent three days crying pretty well constantly. It wasn't dramatic crying. It was really weird. The best way I can describe it is that I was suffocated by the horrible recent past and the frightening unknown future pressing in I think. Just worn down and feeling like it was never going to end.
The strangest thing about feeling like that is how it turns out to be really a side effect of the chemo - I woke up on the tuesday (I think) following chemo feeling pretty well fine. Since then I've been getting out and seeing friends and gradually regaining some semblance of independence, which has been amazing. Last night we switched from 4mg of hydromorph every 24 hours to a low dose of endone as needed (been about three times in the last 24 hours, though to be honest all I did was play videogames so I wasn't exactly putting pressure on my back!). You might be remembering that I was initially on endone (well, oxycontin, but its pretty well the same I think) and switched to hydromorph because I didn't like the way endone made me feel in my head. Hopefully this shouldn't be much of a problem because of the low dose, and the fact there is still some pain for it to be covering.
Though being in pain means that opiates dont make me feel too stoned (not sure how it works, but being in pain changes the effect it has on you to just pain cover) I am aware of the effects its had on things like memory over the past number of months and am looking forward to being completely off drugs hopefully in a few weeks. My memory of this entire year has been blurry, but the last few months are so unreal in my mind - what I can actually recall of them anyway. I dont really remember things unless talking about them in depth with people. It takes a bit of conscious effort to find and access memories. And even when I do the time line is... well, I dont really have one. Its mostly about where I was and whether I was in pain or sick.
So, I'm now technically a member of CanTeen, but am yet to attend any camps/get togethers/parties. The first one I expect to get to is the christmas party, which I'm a little uncertain about. It seems weird to be new amongst a group at the xmas party. But it'l be great to have more contact with people in similar situations. Or just young people who understand what cancer is, and have some idea how to react. That is, they know not to "react" and instead just talk to me as a person. I've met a number of other young patients, mostly through tumblr but also one or two through this blog, making it all the more rewarding. Its good to read about these things and be able to offer and receive empathy and suport from people my age.
Its difficult though, when you come across someone who is yet to begin treatment - who's at the beginning of their cancer journey. Because you know there is nothing you can say that will adequately prepare them from life as a cancer patient. For just how much worse the treatment is than the illness (or so it seems much of the time). The mental struggle with that concept, as it just keeps going and going. Thats the where you really need your strength. Going through cancer, sometimes it feels like its just happening - like you aren't active in the experience. But just not choosing to relax or even stop treatment must be the most impossible thing for young people living on their own who dont have the support network I do to keep things in perspective.
The other day I was talking to some friends about the puppy dog "are you dying!>!" eyes you get from a lot fo people. One of them said, "I dont know how you dela with it, it drives me crazy just seeing people do it to you". I guess I deal with it because I know that no one (my age in particular, older people have less of an excuse) as any sort of precedent in their personal experience of how to react to a young adult with cancer. Because its such a complicated situation that they know they dont really know much about, people are sort of lost about what they should say, if anything. Which I understand. We're an extremely socially awkward society. Other cultures have rules and codes of conduct around grief and illness and stuff. We have conventions, most of which are counter productive and unhelpful.
I'm getting vague now. Must be time to get some sleep. I promise to try not to leave it so long between posts again! Gnight world x
Wow, Katie, what can I say?? Your blogs are absolutely amazing. Reading this one almost reduced me to tears...the strength you have never ceases to amaze me. Your writing skills must have improved over the last year. Although I haven't read anything you have written in the past, I love the way you express yourself in your blogs. Maybe you should take up writing, combining photography, for a career. Love, Sandra
ReplyDeleteHi Katie. The anaesthetist in me wants to answer your question. Yes Endone and Oxycontin are the same thing. They are both Oxycodone. The Endone is a short acting version - lasts average 3 hours and Oxycontin is the long acting version - lasts average 12 hours. Endone and Oxycontin are brand names and Oxycodone is the generic name. Hope that helps.
ReplyDeleteThe fellow cancer survivor in me (hence the FCS) really wants to sympathise with you about how people treat you. Because I was medical when I got my cancer I knew how much discrimination/confusion/awkwardness having cancer causes for people who you deal with. Basically I just simply didn't tell anyone about my diagnosis. To this day there is only a handful of people who even know I had cancer 8+ years ago. I just couldn't see myself going through life having people ask me about it all the time. Actually only in the last few months a friend of my mother in law's was at an event I was at and she came up to me and said "So what happened with you having cancer and everything?" Pretty angry really because I didn't even know my mother in law had been telling all her friends - and I barely even knew this lady either - but also about how casually she put it given a/. I hardly knew her so it was really none of her business and b/. Its never a casual thing to someone who's confronted their own mortality at a young age (I was 31 when diagnosed). I think most often people want to be reassured that the same thing won't happen to them and often they want you to make them feel better about asking. Not how it should work but as you have very succinctly put it - we are a socially awkward society who does not deal well with grief, illness, dying and so on. Your blogs show that you seem to deal with this whole situation really quite well and I wish you much more success than I had at dealing with the people around you :)
Hi Katie. I am so glad you post regularly as there are people you have never met who follow and care and hope and wish you well ASAP. I have read every post and every time I read I send you my thoughts. You are strong and your writing is witness to that.
ReplyDeleteAll my xxx's and ooo's
zuzu/Susan