Tag Archives: normal

Stress Management

In the last few weeks, I have not thought that much about the fact that I have cancer. When I initially thought of that statement, I was going to say ‘recently’, until I recalled that my last crash was only three weeks ago and I know that back then, all those hours ago, I thought about it a lot. That’s the thing about My Myeloma; I’m only as good as my current good weeks. The bad gets forgotten, and it will stay that way until I start chugging down those ‘roids again on Friday, actually, when I come off them on Tuesday.* So, to rephrase; today, I have not thought that much about the fact that I have cancer. It may even extend to last week too, if we can exclude a few live episodes of the roadshow here and there (I even did one on the phone). Ah, the beauty of telecommunications.

Fatigue *may* have been stalking me a bit this week (just ask my pillows), but apart from that, and whilst we are on the subject, some bone pain, I feel a-okay.

Today, for reasons I am not going to share because I am sure you would find it mind numbingly boring and EJ Bones is about cancer. It’d be called EJ Jones otherwise, and then I really would get into trouble telling people about all the aspects of my life and The Network. I’ve watched Julia and Julia. I know about the pitfalls of blogging. Anyway, I am digressing… Today, I worried about something that wasn’t cancer. It actually preoccupied my thoughts. I know that that has happened previously in the last eight months, but I cannot remember when exactly (like I said, only as good as my current good week). Having to engage my brain in something wholly, not wholly, but you know, a lot, with something that for today and perhaps tomorrow and even the next day depending on how tomorrow goes, that is not my illness, banishing It to the sidelines, no matter how stupid I may look, or how flustered I get working things out during this break, is kind of nice.

I nearly text somebody earlier, I have the draft, it went something like this:

Today would have been a bad day if I did not know what Myeloma was and I didn’t have it. As it happens, apart from some testy moments which made me sweat (for once not a flush), and tiredness, I think I enjoyed myself. Is it strange to think that? See you tomorrow. You’ll know it’s me, I’ll have bags under my eyes.

I am always being told that I need to take things easy and I do. My focus, my main focus is to get better (whatever He looks like). Today, for example, whilst my mind has been otherwise engaged, I still had to make concessions. I got into bed at 21:00hrs, shortly after taking my nighttime drugs, so that I can get up in the morning. That said, I have to get the balance right between getting myself better and living. The two are not mutual exclusive. I feel better when I am doing the latter. I’ve been going through this for long enough to nearly always know when to call something quits. So, people, do not panic. I suppose, one could argue that it is wrong for one thing to occupy my thoughts at anytime, but, I’m learning slowly and every normal person gets a good four hours on me a day, so they can fill their minds with more things. And, really, don’t rain on my parade.

I know I am not in a long term, sustainable position, but it is the best I can do for now. Damn. It is not sustainable is it? Not beyond my treatment anyway… Well, I do need to see people and tidy my wardrobe and read a book and bake a cake and go to the cinema and some other stuff. So yes, it is not fair nor sustainable. But it is my now.

I suppose what I am trying to say is that today, I feel like I actually lived with cancer. Good and bad. Omnipresent as always, but not everything.

It didn’t make me sad today. Not once.

EJB x

* Note to self and steroids, must not be ill next Wednesday night. I have a date with some Mormons. Actually, do Mormons feature in The Book of Mormon? Is it appropriate to keep saying Mormons? Political correction. Note to self, must not be ill next Wednesday night. I have a date with some contemporary musical theatre.

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Toothache 😁

I have what is commonly known as a toothache. The cause of my problem is not a karmic response to the questionable morality of my decisions this week, no, the cause is the wisdom tooth. Right bottom to be precise.

This little bugger has been at it for two days. I am finding it difficult to eat, which lets face it, is no bad thing. I like to think that it is also the reason why I have not slept well these two nights since. Everybody can sympathise with a toothache I am sure.

As much as my tooth is a pain in my bum, I kind of like it. It’s the sort of pain that I can recognise from my life pre August 2012. My Myeloma is not the reason I am in discomfort and it is a discomfort that everybody can understand.

It was comforting at first, but now, I wouldn’t mind if it went away just a bit, so that I could suck my thumb. I suppose I am also worried that something mundane, like the toothache, could delay my treatment. There can be no delays, I am ready for it all start.

Bring on Tuesday. Toothache or no toothache.

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Firsts

After my diagnosis, I found that my life has become a series of firsts. Simple, and not so simple things I did in my life pre-myeloma, I have had to build up to doing again in a body that is cancerous and painful.

The firsts or milestones have been slow coming, and they have been made more difficult by my physical limitations. That in itself then creates a whole heap of psychological worries. Some have come about intentionally through my dogged determination and some have been a pleasant surprise. These successes are always a pleasant reminder that I am improving. I am not talking about the medicine, I do not know whether that is improving and it is best not to think about that. What I mean is that I am improving and with that comes my growing confidence and independence.

Some may consider my milestones to be minor, but each one is an indication that I am not, will not be wholly defined by My Myeloma.

The first time I had a bath, the first time I walked up a flight of stairs, the first time I went to the cinema, the first time I got on a bus, the first time I could use the oven unaided, the first time I could walk into town and do my own shopping, the first time I went into work, the first time I had a pint, the first time I did a starfish in my bed, the first time I went to the BFI.

All of it equates to some normality and recognition of something I feared was lost.

There is still a way to go. I am looking forward to the day I can change my own bedding, but I know that that day will come.

Each time I experience something for the first time all over again, I feel stronger, regardless of whether my decision to do it was medically or mentally sound. And most the time, I wonder what the big deal was in the first place.

With that in mind, last night I slept using just two pillows. It was a first.

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A Christmas Message

It’s Christmas Day. I made it to Christmas Day. I am awake and ready to spend the day with my family. In. Your. Face. Myeloma. You could not take it away from me.

I had considered doing a video message for you all, but seeing as it is Christmas and you are all likely to get lots of gifts already today, I thought the gift of seeing the laughter behind my eyes too much. One can have too much of a good thing. I will save that treat for a rainy day in January when today is but a memory, and the fact I have a lifelong cancer won’t matter so much.

The last five days have been tough. Real tough. Tougher than my previous cycles and the fault for that belongs to Christmas. I have and will continue to try my hardest to pretend that this is just a normal Christmas, but it’s not. Everybody knows it is not. I have cancer. My Myeloma is not the elephant in the room, because I am confronting it at every moment of the day. As I lay in bed, hoping for my Christmas wish to come true, every time I closed my eyes or it was silent, the words ‘cancer, myeloma and death’ would appear in my head. That really is not the spirit of Christmas, at least not the one Hollywood has taught me. I know though that there are only so many tears I want to spend thinking about it, because it is indeed Christmas and I do want to enjoy myself and spread the Christmas cheer. Take today’s outfit for example, I look like a postmodern Christmas tree and that my friends is on purpose.

I want to tell you all the things I have learnt this year; and advise those not as blessed as me, how to live their lives better, much like the Queen will at 15:00hrs today. Unfortunately, I do not think that Santa brought me enough words for that and this blog is time bound. Thus, because it is Christmas Day, I will warm your heartstrings and in the words of Ebenezer Scrooge, say “it’s true wherever you find love it feels like Christmas, it feels like Christmas, it feels like Christmas, it feels like Christmas” goddammit.

Now, us Jones and James Cottam Flooring are going to try and have a good time. We have two Christmas trees… which says it all. We are the bomb.

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Merry Christmas to one and all, and to my friends and family, I love you long time.

EJB x

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