Monthly Archives: October 2013

The Big Poke

Last week, I had me a little bone marrow biopsy for a laugh. Not a laugh as such, more like a painful necessity, that I feel like I have become accustomed to.

The procedure was my fourth biopsy and I can confirm that it was very painful indeed. At one point, I am sure I screwed up my face so tightly, that it looked like I had it firmly clamped in a vice whilst constipated. Having done two of these bad boys by myself and two with another non Medially Trained Person, willing to chat utter nonsense to me whilst somebody is drilling into my hip, I can honestly say that giving in and saying that I needed help, makes the whole thing much much easier. Much easier. Friends huh, aren’t they just the best?

A few things distinguished this biopsy from previous ones. The first, and most embarrassing involves the Hot Flush. I know, I am still having them, for which my bedsheets are thankful. After the big poke, I went for some tea and cake and I got my sweat on. I got my sweat on real good. It was to such an extent that I sweated off the dressing on my hip. I did not even know hips could sweat, but evidently they do. I only realised that they do, when I went to pull my knickers down for fun and pulled that plaster clean off. As a consequence, I had to go back to the hospital, admit the unfortunate truth and get in cleaned and redressed.

The second issue that distinguishes this biopsy is the pain. It certainly hurt during it, but it’s the pain after that has me ouching. By the end of the first day, I was walking with a limp, something I would have previously saved for the drunken injury. And then the pain did not go away. It hasn’t gone away. I am no longer limping, but there is a funky feeling from the bottom of my spine round to my hip. My brain works in funny ways and I cannot recall whether the pain started before or after my biopsy, and this I find most frustrating. I am awash with paranoia. Paranoia and pain; everybody’s favourite duo. Will said pain subside? Is said pain real? Is my kyphoplasty reversing? And so on and so on and so forth.

The final point that makes this biopsy an episode of Fun House is the result. I suppose the result of the last one was important too, but that has been done and dusted. This is now.This biopsy determines what is going to happen to me going forward and that my friends, is all so very important. It’s serious stuff and I know that. I know that everyday, and I will continue to do that until I get the result. Just 10 days to go. Woo hoo.

Now, when you close your eyes to sleep tonight, just imagine me and my sweaty hip. Phhoaarr.

EJB x

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Regrowth Part II

For most people in this fair land, hair grows. It grows and you have it cut, shaved, waxed or lasered. I am nowhere near the former, but I am most definitely in need of the rest of them, for my hair is growing back with a vengeance. Everywhere.

Everywhere I look on my body, hair is coming back thicker and denser than it ever has. Only on my head and on my brows is this a good thing. Okay, my eye lashes too. I appreciate that these are growing back, even though they currently look like I was a victim of a subtle practical joke involving a pair of scissors. Gone are my Chinese brows of yesteryear and in are black slugs. Maybe they are not slugs yet, but they are going to be something the TOWIE’s would be jealous of. I think the miracle gel known as Lilbrow assisted this framing device.

As for the rest of me? Well, save a miracle, I am not far away from a five o’clock shadow. If the hair on my head grew as fast as the hair on my chin and upper a lip does, I would be an almost happy women. At some point in my future I would like a man to stroke my face and then cover it in gentle kisses, but the mood will be somewhat ruined when the mythical man encounters my whiskers. Oh and my fingers and toes…. I really do not know why anybody would need hair here, but my body has decided that I do. I really do not want to look like Robin Williams. The fault belongs to drugs I fear. Steroids and chemo. Life may be easier for a man, but that does not mean that I want the appearance of one. It’s a shame. Any man, would have to be a brave one/have an unfortunate fetish.

The hair on my head is progressing nicely. I have discovered that grey hairs grow faster than my dark shade of brown ones, but even those now cover every part of my head. We are almost at the stage where my ‘do looks optional. We all know it is not, but right now, I thoroughly enjoy stroking it. It’s like having a rabbit on my head. A nice, soft rabbit. Who knows what next month is going to bring? A yeti?

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Mission Complete

At approximately 17:40hrs on Saturday 19 October, I completed the challenges of challenges. I claimed my Everest. I proved myself wrong. In 11 days, I watched 16 feature films and 22 shorts over 19 screenings and I did it all by myself and all without falling asleep in the cinema. To say that I am proud of my achievement an understatement.

I am very proud of myself.

It was not a walk in the cinema, let me assure you. I had had to rely on something known as a taxi more than I would have liked, I fell asleep on the bus in the middle of the day, I became the fidgeter of all fidgeters, suffered severe back pain and there were even a few times when part of me would have preferred to stay on my bed watching films made before 2011, but I carried on. I got my bum to central and East London’s finest cinemas on time, and I relished every moment of it.

At the start of my quest, it was about me defeating my fatigue and thus My Myeloma by doing something I wanted to do, with the cancer tagging along for the ride because these days, I have to accept it’s presence. Just before the halfway mark, and this is the reason I stopped blogging about my daily screening, I found something that was so much better than what I was trying to prove to myself by sitting in the dark. I found pockets of time where I did not have to rely on other people to make me feel good or valued, something I think I lost sight of in recent months. It was all on me. Sure some people had to make the films I was watching (I am not on that many drugs), but I did not need them to hold my hand throughout the screening. I did not need them to carry my bags. I did not need them to support me. I did it all by myself. I stood on my own two feet for 11 whole days.

For those 11 days, with each screening, my brain was able to think about something more than myeloma, in fact, with the exception of the fidget and the need for morphine, LFF offered me at least 40 hours that were completely myeloma free. 40 hours! That’s 40 quality hours of concentration and thought. I did not think about my paraprotein level, I was following somebody else’s story and when I was not doing that I was reaching into my mental library, searching for influences, taking notes, analysing the themes and pondering the thought process behind an aspect ratio. It was bliss, even with the depressing ones.

It is said that cinema is a powerful medium. More things are said about cinema to be sure, but I thought I would point out the obvious. Film is much more than that to me, and when I attach so much meaning to everything now, my experience at LFF is so much more than that. My very expensive annual challenge reawakened something that I thought was dead. It’s indescribable, despite my poor attempt at doing so. Imagine a montage, with several images of me looking brain dead and confused leading towards images of me alone in the dark, wearing various wigs, looking engaged, thoughtful and happy and with each shot my eyes brighten to the point of sparkle. It would need a good actress to pull it off, but I think I am game. The accompanying score would be saccharine such is the power and subtlety of the movement.

Of course things have been adapted for My Myeloma, the taxis and lack of socialising outside of LFF proves that, but at the same time, I probably learnt something that you all knew already and that was not everything has to make a concession to myeloma. Not everything about me has to make a concession to My Myeloma. I do not know why I did not know this.

One week later and I still suffer from fatigue, but I feel stronger than I have for a long time, even with a cold. Crucially, I have stopped crying everyday.

The power of cinema…

EJB x

In case anybody is interested, I saw the following: Captain Phillips, The Spectacular Now, Vic + Flo Saw a Bear, Computer Chess, Nebraska, The Double, Ida, 11.6, Like Father Like Son, Me Myself and Mum, Sarah Prefers to Run, May in Summer, Heli, Don Jon, The Grandmaster, Drinking Buddies and three sets of shorts.

The day after it was all over, I took myself to the cinema. FYI.

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The Fan

Getting ready for a night out is something that comes rarely to me these days. So rarely in fact that the thought of a ‘night out’ brings such panic that one purchases two outfits for it (the final choice was successful FYI). What should one listen to these days as they yank their tights up? Should one even wear a tight? Who am I kidding, I would have worried about that regardless.

I am quite thankful that Housemate was out this evening for the process, though I wager, not as much as he would have been. I was present when I tried on more than the two outfits whilst downing cider, and it was not pretty.

Out I went though. My first proper night out since I was castrated and I think I have done okay. I stayed out later than I told anybody and myself I would. Apparently, I feel it is acceptable to use myeloma to get what I want now. By want, I mean drinks. Drinks, drinks, drinks. And cheaper taxi fares. Pretty much, I will announce anything if I have had enough drinks if it is to my benefit.

I’m going to feel like death tomorrow and that death is not because I have cancer. All the other people waking up on a Sunday morning feeling like death, will be sad, I may I’ll just feel how somebody my age should feel. The only difference is that they did not need a fan in the event of the hot flush.

I have myeloma, I have had a transplant and I am pissed. It’s pretty fun.

Right now, for sure. Not so much tomorrow.

EJB x

P.S. I was wearing polyester.

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Give Me A Seven

It is rare for me to get excited about anything myeloma related these days. Gone is the time when I had targets, hopes and dreams. I still have a diluted version of the last two I suppose, I just liked the sentence structure. My dry wit, however, does, if one is reaching, offer some evidence towards the statement above that I really do not get excited about anything myeloma related. I have been there, done that and got the stem cell.

So, imagine my surprise this morning when I did get excited. I did jump up and down in my bedroom and I did</em scream out loud. As a result I did procrastinate so much that I had to get a taxi into town; that is my excuse and I am sticking to it.

In this morning’s post I was pleased to receive the note of my last doctor’s appointment informing me that my paraprotein level is no longer 8. My paraprotein is now 7. Seven. It didn’t go up.

I know there is not much in a point. It doesn’t change my circumstances. I have previously talked myself into thinking that a point up or a point down in the world of paraprotein means very little.

That said, for today, I’m going to let myself have a little bit more hope than I did yesterday, because recently, not even in my dreams was I hitting a seven.

A seven.

EJB x

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Patent

Wanted – Somebody Who Is Good With Their Hands

Ever wondered why you never see a person walking with a walking stick and an umbrella? Even seen somebody walking with a walking stick getting absolutely drenched in the rain and thought, that’s sad, it’s unfortunate they do not have an umbrella? Or have you ever seen somebody with or without a stick, struggle to hold their umbrella for a period of time and pointed them out to your companion, as a pathetic weakling who does not have the strength to hold an umbrella upright?

Rain brings a multitude of dilemmas for the crippled. Going outside can be like Sophie’s Choice. City living really can be traumatic. Something needs to be done to protect the needy from excessive moisture.

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The time thus, is a time for action. Action and innovation.

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Have you ever wanted to help the disableds and did not know what you could do? Do you always feel like you could be more charitable? Are you handy with some tools? Do you have an overwhelming need to show off your skills? Can you weld? Can you smell titanium?

If you have said ‘yes’ to one or more of the questions above, then maybe two can become one, to create something rather special. Not a baby you fool. Despite having a wealth of creative imagination, I have little skill, it pains me to say in manufacture, crafts and neatness. I am seeking somebody to execute my creation of the walking stick/umbrella combo. The Walking Stick/Umbrella Combo (working title only). The device appears to be a standard walking stick, but the handle either stores an umbrella or holds a weightless umbrella attachment, allowing the unfortunate to protect themselves from the rain, without having to sacrifice their walking support or changing the position of their hand. It’s ingenious. I know, you don’t have to tell me.

Artist’s impression on graph paper

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So, if you think you can assist and we can make millions, do seek out contact.

If like me, you have no talent in this area, or simply, if you have no desire to take time out of your physically enabled life, then that is fine. There is no issue. No issue at all. You cannot help me. That’s fine. Just fine. I don’t care.

Emma Jane Jones
Designer

P.S. If you are feeling thankful right now that you can go out in the rain and hold an umbrella, and this sorry for those who cannot, but you cannot help my entrepreneurial ambitions, maybe just help out some cancer patients or something. Paul tells me he is going for a jog of some sort, in the east, it’s not quite welding metal, but it’s something. Here’s the link https://www.justgiving.com/PaulTompsett/
If you cannot shower my scheme with money, shower Macmillan via him.

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Screening Number Five

Film: Nebraska

Running Time: Four fidgets per minute even though I was on the front row. An embarrassing four fidgets a minute. A painful four fidgets per minute. The fidgets had absolutely nothing to do with the running time, for what was quite a marvellous film. The fidgets, I suspect were linked to the fact that I had been sitting in an upright position for eight hours out of a total of nine hours. It was like the cinema seat had hold of the bottom of my spine and was spinning me around by it, over and over again and when it was not doing that, it was slowly snapping just above my tush.

Protagonist’s Myeloma Survival: The protagonist, an aged man, could quite easily have been living with myeloma. He walked like he had myeloma. If he did have myeloma, he probably would have had to take more standing breaks in his drive from Montana to Lincoln, Nebraska. I have a feeling, it is a drive longer than the one to London to Deeping. Much of the cast looked like they were the key myeloma demographic, so their survival rating was pretty average.

Fellow Audience: Considerate. I would have annoyed me if I were next to me, fidgeting back and forth, side to side in my Afro. I’m no petite angel. Anyway, it was not a sci Fi, so I was sitting at either side of me. They were called ‘strangers’. Okay, the older gentlemen to my left, sort of got me back by reading anything out loud that appeared on screen. At first I thought his companion was blind. He wasn’t, for he too decided to tell us that the protagonist and his son were at a motel. The man to my right was seeing more films than I was. I am still jealous.

Trivia: Alexander Payne would make an amazing guest at a dinner party. He makes amazing movies, well, The Descendants not so much.

Tired Rating: Nothing compared to the pain rating, which as I made the walk out of the cinema to the cash point to get the necessary taxi home, made me cry in pain. It was nice to cry about something physical. The tiredness did not really hit me until I got home and took some Oralmorph. The pain was so bad, I broke on of my rules.

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Screening Number Four

Film: Computer Chess

Running Time: Mercifully brief, however that did not prevent back pain of epic proportions only matched by the dreaded nervy headache, present for the film’s duration, which was slightly distracting. Incredibly distracting in fact. I blame the seats. It definitely was not my fault.

Protagonist’s Myeloma Survival: 10 years +. In a story about computer programmers developing the ultimate game of chess in 1980, anybody could be sitting there tap, tapping away, not knowing that their bones were wasting away into their blood. As the film was set in the ‘olden days’, any myeloma sufferer would be passing just a few years later. Shame that. I guess however, were it not for persistent nerdy types, with limited people skills and a taste for drugs, the average lifespan of the myeloma sufferer would not have risen to 10 years now, would it? Not that one should be looking at what happened behind the scenes, but this improvised piece, could have been designed by somebody on thalidomide.

Fellow Audience: Damp. The rain yesterday afternoon was committed. Types. Mumblecore esque movies collect types. I obviously, do not fall into this bracket of which I speak. As the introducer said, “you’re at the ICA on a damp Friday afternoon and you are about to see a film called Computer Chess, you know what you are getting yourselves in for.” He was correct.

Trivia: The producer of the film appeared to be having The Hot Flush of to flushes. He had my sympathy. I had one in there and I was wearing pleather.

Tired Rating: Rockin’ rollin’, full of beans though somewhat perplexed by the nervy headache, which is bound to be a brain tumour. Intent on ignoring the brain tumour, to make my third film of the day.

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Screening Number Three

Film: Vic + Flo Saw A Bear

Running Time: Reasonable, though that did not prevent me from moving around so much that it looked like I had ants in my pants/thrush.

Protagonist’s Myeloma Survival: Bleak. I don’t want to spoil it for you, but people bite the dust. Literally. People die in dust. Not people, ex convicts. Filth. Myeloma or no myeloma, being caught in a bear trap is going to have the same result.
Mind you, if they had myeloma, they’d be dead already, what with being in prison and all. Potentially. Myeloma patients probably could not handle the isolation of living in a forest in Quebec with only a mute paraplegic, a parole office and a lover for company. My experience tells me that myeloma patients need lots of love, attention, are needy as hell and require constant reassurance. The characters did not offer this to each other, so… Also, can lesbians get myeloma?

Fellow Audience: Serious film going peeps, looking for a good time, in a film about two lovers who live in the middle of nowhere and die, and then come back as ghosts who where double denim and drive a golf buggy. There is a lot of double denim about. The bald man in front of me, aka, a kindred spirit, had such a large head, I struggled to read the subtitles. Fact.

Trivia: This is the second film in a row where people drink beer using the pitcher technique. I do not understand the concept. Fizzy beer goes flat and it gets warm… Oh, and I have no idea what the film was trying to say, or whether I liked it.

Tired Rating: Tired? Who’s tired? Not me. I’m on a roll.

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Screening Two

Film: The Spectacular Now

Running Time: Four fidgets and a leg stretch, followed by an easy stand reminiscent of the stands pre 2012. Thank goodness for aisle seats and leg room. Thank goodness.

Protagonist’s Myeloma Survival: The future’s bright, well, dull really. Shortened perhaps. Overcast some might say. If you were to add myeloma into the mix of a coming of age story about a fun loving 18 year old, struggling to find his identity, you would get a different story all together. The world would not be his oyster. The protagonist would also become a medical marvel for all the wrong reasons, because 18 year olds do not get myeloma. He would become an unfortunate. This particular myeloma sufferer would probably benefit from the well written love story, failing that, just the love scenes would do.

Fellow Audience: It was too empty for me to notice. Shame for the filmmaker, not a shame for my back.

Trivia: I had a two pieces of fancy flapjack in my bag in case I got hungry. I had a dream last night that the screening actually happened in individual hotel rooms on TV screens with a group of people I did not know, I was so enraged, I dream tweeted with a hashtag. A hashtag. #Analysethat

Tired Rating: Positively full of cartwheels… The four hour nap this afternoon probably helped with this. Or so I thought, for sleep came an hour after I returned to my flat.

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