Today due to a slight miscalculation on my part, I did not end up taking my steroids until this afternoon, that means one and one thing only. I am awake.
Being awake, gives one amazing stamina to stay out on a Friday night, in fact, this particular cancer sufferer has been out of their house for 15 hours today. I am aware that this a good thing, regardless of the time it resulted in me taking my drugs. I have to try and live, I guess. I don’t guess. I have to try and live.
The problem with good things and ‘living’, is that they always remind me of what I am missing. And try as I might, I am missing a lot. I am not living the life I want to live. That’s the long and short of it. I live a crazy existence where I put on a brave face everyday, and I strongly believe that this is the best way for me to exist, you can see it in my eyes and I am sure the person who told me that, never intended for me to take it this far. The problem is, we all know that my existence is far from ideal. I don’t want you sympathy. I don’t want people telling me they understand, because I don’t think you do. You may empathise, you may have myeloma, but you don’t know what this is like for me.
I am 28 years old and it is a Friday night. Correction, I am an interesting 28 year old and I am narcissistic enough to admit that I was once pretty fun. My predicament makes me unique and I know that because the Medically Trained People told me so. Many times. A year ago, I would have enjoyed the Kronebergs so much, that I would be in a long deep sleep by now, awaiting the embarrassment upon waking on Saturday morning. I don’t get embarrassed now, because that sort of thing is superficial and all I want to do is live. I can say the most ridiculous of ridiculous things and it is okay, I brush it off because I have to deal with the myeloma everyday. Other people may make me anxious, but I don’t make me anxious. I want to get to a point where I can do what I want, and that seems so far away from me. There are days I think, I’ll never get it back. I try, but it won’t come back. I feel beyond middle aged and I am not ready. I will never taste that two day hangover exaggerated by whatever I had done when I am drunk. Now, as late as I stay out, I am still the girl who comes home with her month’s supply of drugs safely contained in their double bag and who takes her Thalidomide and Fragmin when she gets home. I want to irresponsible. I want to have drunk so much that tomorrow all I can drink is Lucozade and on Sunday, I abuse my pesky body with carbohydrates. I want to have lost something, maybe a red hat, I don’t know. I want to go crazy, but I can’t do that. I want to chain smoke, and I mean chain smoke so much that I cough up tar. I want to eat Smash and corned beef. I want to fall asleep with my make up on in the clothes I wore the night before. But I can’t do that.
I enjoy a Friday night. I still enjoy a Friday night. Locking myself away when I have amazing people in my life is not an option, and tonight has been yet another example of those amazing people. Not collectively. The problem with enjoyment is that it always reminds me what I am not experiencing and what I cannot do and what I cannot have. It’s a different level of commitment, trying to prolong your life. There is one thing and one thing only I want to do this weekend, but I am sensible and sensible says that I need to relax, in Dalston, take my drugs and eat fibre. I want to go so crazy that I flash my breasts in public and I have never done that, those bad boys are barely out of a bra in front of another person, occasionally, they may fall into the arm shelf in my kitchen. I want to be ashamed that I used the word ‘fingered’ in a conversation this evening. I want to feel guilty about my indiscretions. I want to stay up all night and I want the reason for that to be my amazing stamina on canned beer, I do not want it to be induced by prescription medication. I don’t want to worry about how I am going to buy my milk in the morning. I want to be me.
My Myeloma, as much as I fight it, has changed my life. It will probably take my life. I know this, because I close my eyes and this is all I hear; it is all I have heard for ten days. There was so much to do, and now I don’t know if it can be done. I can pretend as much as I like and live in the land of make believe, but I live in the constant shadow of death. I cannot be free of that, my transplant offered me some freedom, some respite, but now that option has gone away. I don’t want to know my current paraprotein level, because the future seems so unattainable and I don’t want to get my hopes up again. I believe other people think this too, I know this, because my insomnia tells me that too. This is why I am trying so hard to be seen, because, I constantly fear it is all going to come tumbling down. I am going to come tumbling down and nobody will acknowledge he much I like Kate Bush.
This is my situation and I deal with it as best I can, I just, everyday, at least once, wish that I didn’t have to. It’s so slow and there is no sign of a resolution. People want to know why I cannot sleep, in addition to the drugs, and the obvious answer to the question I do not want to be asked, is try carrying this around with you everyday and taking it to bed every night. Does nobody want to tell me that my aspirations can only be realised in my sleep? Do they think what I think too? Are they humouring me? Who is taking pity on me, some of you are, you told me? Who is put off by it? Is this it?
How was your Friday night?
If my Friday night has taught me anything, apart from the power of solidarity, predictably is safe and it is comfort and in this I find some comfort. Maybe not for the reasons you expect, but I do. There may be a time when spontaneity wipes me off my feet, but not now. For now, I will take my Friday because that is all I can do. Except it is now Saturday. The birds are singing.