Tag Archives: BFI

18 is a Magic Number

Just over four weeks ago, on a Wednesday evening, I sat on my sofa brimming with excitement. I really do mean brimming. My cup was running well and truly over. There was so much excitement in my belly that I felt almost giddy. In me, giddiness general manifests in mumbling to myself and occasionally rubbing my hands together like I have just hatched a masterful plan. The cause of my excitement was not because it was the evening of the Great British Bake Off final and Housemate and I had settled in for a night with a takeaway, although that sort of thing does stir my loins these days. No, my excitement was due to the fact it was the eve of my annual film marathon. It was the eve of the London Film Festival. I wrote a very similar blog last year, and the year before that, so you could just re-read those instead of reading on. 

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Still here? Grand. 

This year, unlike two years ago when I was also post transplant, there was no question in my head of me not partaking in what is a film lover’s paradise. I may have had two transplants this year, but going into that treatment, I simply told myself that by October, I would have to be ready to see one, maybe two films a day for eleven consecutive days. I did have to give consideration to my stamina, so I had long concluded that if, at the time of booking, I thought I might struggle, I would give myself a day or two off during the eleven days. But, essentially, by hook or by crook, I knew that I had to get my bum down to Leicester Square, at least ten times. My mental health depended on it.

To those with able bodies, this might not seem like that much of a challenge. Mamma Jones tells me that it is, but she’s my Mum and she has to say things like that to buoy my ego. It is now 17 days after the festival finished, and I can confirm that it was definitely a challenge for both my body and my mind. Put it this way, I no longer think I am just in recovery from an allogrnic transplant.

Prior to the booking lines opening in mid September, I set myself a realistic limit of 12 films. In reaching this calculation, I factored in how much activity I had been doing, how many films I saw the previous year (20), financial considerations and the overall weaknesses of my body that I endure daily. When the booking lines opened, I disregarded all of that and  booked myself in for 18 screenings to start on 9 October and finish on the 19 October. My response to this momentary lapse in control was ‘whoops’. The Bank of Mum was the official sponsor of my film festival, providing financial support as well as daily cheerleading throughout the process.   Inevitably, as I sat on the sofa waiting for the GBBO to start, I booked in another screening, bringing my grand total up to 19 screenings, because my giddiness had made me feel ever so slightly invincible.

To many people, including myself, there is a little bit of the ridiculous about how I approach the film festival. I got carried away. I really, did. The London Film Festival no longer simply represents an annual period of cultural indulgence. It’s become how I prove to myself that my will still has some say in how I conduct myself and spend my time. That is an important thing to remember every day, but LFF is a handy reminder that even if my grip is weak, I must still cling on to the things that make me, Me. I am not just a Myeloma and chemotherapy riddled vessel, despite the occasional propensity for me to think this.  

To me, and I think it is evident to my nearest and dearest, it is imperative that this part of my life does not stop. My brain couldn’t take another loss. What I get from throwing myself into multiple dark rooms, not talking to strangers over x amount of day lasts way beyond the days I am doing it. I’d had two years of testing the theory.

No pressure then.

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In the months prior to the EJ Bones Film Festival launch date of 9 October, I had managed to get on a bus four maybe five times since Transplant Number 2 and not once had the trip been longer than 20 minutes.  I had probably been out of the flat or Mamma Jones’ house for at most, five hours at a time, and the majority of that was probably hospital related. If I did for some inexplicable reason find that I had exerted myself for more than say four hours, I would then need to spend the entire next day relaxing. I also required a good 10-12 hours sleep a day in order to function.

  
19 screenings over 11 days did not give me much leeway for any ‘Bad Days’ and I get by on being able to have a Bad Day. Although I did get carried away with my bookings, I had created a schedule that would use the least amount of energy. If I was seeing more than one film a day, they had to be back to back, so that I did not have to do the 100 minutes round trip into the West End more than once a day. Bar two nights, I ensured I was home by 20:00hrs so I did not not interrupt my drug and sleep routines. I had only booked myself aisle seats to allow my butt more space to wriggle. Any socialising outside of the festival was strictly prohibited. In essence, I had accounted for my every minute during the festival in advance of it. I even planned my meals. It made me extremely anti social. Beyond that, I had blanked out the week after it to recoup, which only added to my misanthropic behaviour. Those 11 days in the middle of October, were my days and I put my hands up and admit that I approached it all with only myself in mind, knowing that it would make me feel better. In fact, to me, it was medicinal. A theory backed up by more than one Medically  Trained  Person. 

To put my energy usage into some sort of perspective, a few days before I found myself struggling to contain my excitement on my sofa, I asked a Medically Trained Person if I should still be limiting myself to the 5-25 minutes of activity a day. I was told that if I could do more, I should do more (but not too much), but at that stage they do not expect people to be able to do  much more than 25 minutes.

I think I have hammered home the point that my plans were ambitious.  

Did I do it?

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Of course I did. 

  
I missed the last screening. So, my film festival finished on the 18th with 18 screening and. I do not consider this a failure. Firstly, I got a refund on the ticket I did not use (ever the bonus). Secondly, I had seen 18 screenings in 10 days and by the evening of of the penultimate day, I was nearly catatonic. Sometimes, pride should be taken in knowing when enough is enough. Given the fact that I could no longer follow a five minute conversation, I knew that a two hour long Chinese musical starting 15 minutes after my usual bedtime was out of the question. If I had gone, I would have only done so, so I could tell you that I had seen 19 screenings and not the 18. 18 was enough. 18 was the magic number that is going to carry me through the next however many, long and dark months of the Unknown.

It was so hard. I thoroughly enjoyed myself, but my will and my body well and truly battled it out. Housemate lived with a zombie for the duration. Some mornings I had to contend with vomit or a similar issue from another orifice. The experience not only highlighted the level of my fatigue othe limitations of my morning drug regime; it reminded me that I have ‘problems’ with my back. Believe it or not, I forget about my back. I suppose 100mg of slow release morphine a day can do that. The same can also be said for spending nearly three months predominantly on my back.  The bus journey and sitting in a cinema seat quickly brought me back to a face squinting reality. 

In getting the bus and being around the general public, I was also reminded that the outside world is a hard place to exist in. It’s not considered acceptable to lie down when you are out, for a start, there are no beds. One of the cinemas had a footstool and I thought I had walked into paradise. Body issues aside, I suddenly and frequently had to factor in that there are the people who are oblivious when it comes to my disability. Mind you, my disability is invisible, so I can only allow myself to be marginally bitter about this. Leicester Square at midnight on a Friday could only be described as a Danger Zone for somebody used to the quiet of their flat. Many days I struggled to get a seat on the bus. There were many days I struggled to walk to the bus. Then there was the one day, when I was sitting in my seat ready to see the latest Studio Ghibli, when a woman on her way to her seat told me that standing up to let her through would give me some much needed exercise. Needless to say, I took her life apart with a disapproving glare. I just told this story to my favourite Medically Trained People, and they responded ‘if only she knew’. Indeed.

In the days that has turned into weeks following the conclusion of the festival, I have been extremely tired and my brain has been in quite a muddle. I started this blog on the 10th October. I feel like all my energy has been frustratingly zapped from my body, but I know that this is just an illusion of my own making. Of course I am tired and I do think some of this is caused by me running before I could walk.  25 minutes, remember the advisory 25 minutes. I went from doing a little every other day to being out and engaged for at least five hours a day for just under a fortnight.  On one of those magical days, I was out for over 12 hours. For those 12 hours, I pretended I was normal. 

During a few moments of existential despair, I have  questioned if I took on too much, whether 18 was too much and whether instead of  giving me hope, it has set me, physically at least, back. A physical setback quickly becomes a mental one too. With the help of my occasional  friend Reason, I realised that I was being missing one crucial detail… I am now doing more, and the consequence of doing more, is feeling tired and being more aware of the very real need for my bed. 

The EJ Bones’ Film Festival could never set me back. It’s spurred me on. The giddiness I felt on my sofa was not met with an anticlimax.

I would not be capable of replicating those 11 days again today. I probably would not be able to replicate it again in a fortnight. The key point for me to remember is that I did it once. And, if I could do it once, less than 100 days after my allograft, what the hell am I going to be able to achieve in 18, 50 or 100 days from now? More importantly, how many am I going to be able to see next October? The answer isn’t endless, but I know it is bigger and that is something to cling on to.
I am glad I set myself such a busy challenge, which means I am even happier that I was able to do what I needed to do. My will won out. I won that battle. Now, I just need to find a new one.

EJB x

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For those of you who are interested, I saw the following:

1/ Grandma (USA)

2/ The Club (Chile)

3/ The Daughter (Austrailia) 

4/ The Measure of a Man (France)

5/ When Marnie Was There (Japan)

6/ Son of Saul (Hungary)

7/ Room (Canada/Ireland)

8/ 11 Minutes (Poland)

9/ The Assassin (Taiwan/China)

10/ Evolution (France)

11/ Chronic (USA)

12/ Carol (USA)

13/ Desirito (Mexico/USA)

14/ Cowboys (France)

15/ Dheephan (France)

16/ Anormalisa (USA)

17 & 18/ A selection of short films

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♿️The Cancer Card♿️

With all this talk of the stress of benefits and the general downsides of having cancer, I thought it was an opportune time to boast about the upsides of cancer. The greatness of cancer if you will.

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Cancer, unlike other disabilities, is hidden. These days, people rarely look me and think that I have cancer. If they did, I would not find the occasional, and crucially, the unavoidable Saturday jaunt into the Dalston Sainsbury’s so traumatic. The truth is, the big group that is People, rarely even see the walking stick. I think the point I am trying to make is that they would see a wheel chair, grey hair and wrinkly skin and maybe even a hearing aid. They do not see Myeloma. One needs proof of that, and now, I am in receipt of tangible proof.

The walking stick is not enough. I found that it does not accurately represent what is happening in my body, nor does it represent what can happen to my body if I were to fall flat on my face. Prior to my tangible proof, the only option open to me, was for me to tell people about My Myeloma. I do not mean I would tell everybody I came into contact with, what I mean is, I would tell people if I thought it would be of advantage to me.

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It all started innocently enough, for there are several reasons, daily reason, where I cannot do something because of My Myeloma. As I cannot do certain things, I have to ask people for assistance. For example, I once asked a stranger if they could tie my shoelace up for me. The first time I got a train post diagnosis to Wakefield, my return journey was disturbed by a broken down train or two, and so, in Leeds where I had been transported I panicked over how I was going to get on a seat on the train. I thought about it, and as I was so innocent and sweet back then, instead of telling People my woeful tale, I phoned Big Sister and talked to her very loudly whilst dropping in key words like ‘chemotherapy’, ‘cancer’ and ‘pain’. I got a seat.

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Over time, my skills have developed, as have my tools. I have discovered that the occasional mention of my illness to a taxi driver can result in a discount or even a free journey. That however, was not enough for me. As my finances have been so detrimentally effected by My Myeloma, what I wanted, nay, what I demand, is the concessionary rate whenever and wherever I can get it.

The guaranteed concessionary rate is something I had to work for. There are some institutions, the British Film Institute for example, which take you on your word. Most institutions, the British Library for example, demand proof of disability. Fortunately for me, last August I applied for Personal Independence Payment, and in December, after a lengthy form and a letter, I was told that I would get the enhanced payment. As well as providing me with crucial financial assistance that covers the extra costs of being pretty useless, PIP opened up a whole new world of discounts. You just have to know where to look for them.

In London, as a standard with PIP, you are allowed to apply for a Blue Badge, a Freedom Pass providing free travel on Transport for London and a Taxicard. I applied for all of them. The Blue Badge is most beneficial; it means that when I am being driven, I can park in disabled bays, which means I do not have to walk as far. In London, it also means that one can park for nothing on a residential street. The Taxicard provides me with 52 £10 subsidised taxi credits, meaning I only pay £2.50. I have been saving these for my financial ruin. The Freedom Pass, well, I am not in receipt of that yet, because I had an argument at my local Post Office.

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What you are less likely to be told about is the Disabled Railcard, which for the bargain price of £20 a year, one gets a third off all rail travel for the disabled and the person they are travelling with. It has been most advantageous. You can also arrange for assistance at the station, and I have found that people are far more inclined to lift your luggage onto the train for you.On another trip to Wakefield, with my railcard in hand, the train once again broke down and the passengers were decanted onto another train. Instead of passively aggressively getting a seat by ‘accidentally’ telling strangers I had cancer, I walked up to a member of staff, flashed my railcard and started to cry. Before I knew it, I was escorted to the First Class carriage. Score!

What nobody will tell you about, is a pure wonder. It is a wonder that is called the Cinema Exhibitioner’s Association Card. It’s a mouthful to be sure, but for a £5.50 + £1 admin fee postal order, I now have a magical card eligible in over 90% of British cinemas, that provides a free ticket to my carer whenever I go to the cinema. Given that this is my favourite pastime, I have found this card to be a great way to win friends. My local cinema allows me to use this card with my membership discount, which usually means a ticket sets me back all of £2.85. Sometimes, I find myself looking at the CEA card, and stroking the fetching photograph of myself, such is my fondness of it’s power.

For the times when watching people perform in celluloid is not enough for me, discounts can also be found in the majority of London theatres. The big corporate theatres in the West End, via the means of a separate disabled telephone booking line, even offer half price tickets for those less able go manoeuvre. I experienced such a treat on Thursday.

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Elsewhere, in the big wide world, I am also eligible for concessionary rates at galleries and museums, and the National Trust. I have had to teach myself to be brave enough to ask for the discount. I tried a few times before I carried the additional three cards in my purse (NHS free prescription, eye care and dentistry card included), and my success rate was 50/50. The Imperial War Museum Duxford for example saw my bald head and stick and offered me a concessionary rate automatically. On the other end of the spectrum, the British Museum told me I had to provide them with ‘evidence’. I do not think my biopsy scares would have suffices. I knew on that day that I should have booked online.

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Some people might think that I should not be doing these things because I am ill and because I have limited funds. The truth is, I find that these discounts are essential because I am ill and because I have limited funds. I very rarely socialise with people like I used to, in a pub. If I am honest, I rarely leave my flat. To be able to leave the flat, and to be able to afford to do something that I enjoy, can look forward to and that provides me with a few hours of escapism and thought, is vital to my treatment. It allows me to keep hold of some of the things that existed before myeloma. For a while, I was ashamed to admit that I was receiving discounts and when I was not ashamed I was embarrassed to ask for it. Not anymore. I will take whatever I can get to improve my quality of life. I will also ask for it. I am convinced that other people would benefit from these little perks too, so, do your thing now and spread my words.

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Before I end this blog, I should probably add in case you thought this blog in poor taste, that I would give all of this up and probably two limbs to boot, if I could wake up tomorrow morning myeloma free. The world and Bruce knows that this will not happen, so, I will just have to keep flashing the C Card.

EJB x

P.S. Rule Britannia 🇬🇧🇬🇧

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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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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 One

Film: Captain Phillips

Running Time: Back Seizing (to consider morphine for any screenings where I do not have an aisle seat and I’ll be sitting for longer than two hours)

Protagonist’s Myeloma Survival: Dead. Or at least paralysed. If the lead character had myeloma, particularly with a weak C5, they’d be saying bye bye to wiggling their legs and arms to be sure. Must avoid being attacked by pirates with guns and a quick temper. It’s based on a true story, so I’m pretty sure that a shipping company would not allow a myeloma suffer undergoing treatment, to captain a ship off the coast of Sudan. We probably couldn’t be a Navy SEAL either.

Fellow Audience: The girl to my right was texting somebody called ‘Ice’. Apparently she was having a bad day…. The girl to my left tutted when she stood on my stick, and then when I explained that it would take a whole for me to stand up. She smelt like fish, apt I suppose for a film set at sea.

Trivia: It turned out the opening night gala of LFF was a black tie event. 95% of the audience seemed to have got that message but me. I’m not going to lie, it was quite embarrassing. Why oh why did I wear blue jeans? That’s going to play on me when i’m with EMan later. I was so embarrassed, I was not able to execute my attack on Tom Hanks (translation of attack equals saying hello), which I had purposeful not worn a wig to execute. Goddamn.

Tired Rating: I really wish my mummy could pick me up from the bus stop and then tuck me in… Yes, at times, Mamma Jones still tucks me in. I have cancer.

A blurry image of people

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My Red Carpet

Setting targets is not for me anymore. I do not do it. Except I do do it. Everything I do that does not involve lying down is a challenge and thus a target for me. I might not vocalise it, but they are, and I am usually filled with a sense of achievement when I am done. That’s my life now. Somethings, are bigger than others.

Right now, it’s seismic.

Last year, when I was new to all of this, I had to forgo something that I love. I had to forgo many things, but this specific thing made me cry and required much reassurance from my friends, who told me that not doing it, did not make me any less of a human being. It was more than that, not doing it, did not make me feel any less of a film fan.

“It’s only for a year”, they said. Myeloma is not only a year is it. My volume goes on.

Right there and then, cloaked in disappoint, I set myself a target. The target said that unlike October 2012, when I spent 12 days, just like the 128 days around it on PADIMAC, I would spend 12 days in October 2013 travelling around London seeing as many new films as my body would allow, whilst in a state of pure enjoyment. It was a target of targets and in my mind, by the time 2013 came round, my life would be back to my normal.

My year did not work out the way I envisaged or hoped. We all know that. The reality of my target, thus is quite different from the one I envisaged or hoped all those months ago. Instead of spending 12 days watching films because I am better, I am planning to spend 12 days watching films with My Myeloma. I am tired of it stealing things from me. I want to continue this annual ritual and if the only way I can do that is by accommodating My Myeloma, than so be it.

Perhaps my challenge and ongoing target is to accept that everything in my life now has to be adapted. I have to make concessions, even when it comes to the motion picture.

To achieve my carefully selected 17 films between today and next Sunday, is a military operation. Booking the tickets alone was a military operation my bedroom was essentially the venue for a COBRA meeting. There is a survival kit in my handbag. There are pre cooked meals at home. I will purchase a travel card because I only just remembered that I needed to do that. My social calendar is closed to anything else. All to protect me from the big Fatigue. There is more, more concessions, but I do not need to bore everybody with every detail and scenario I have considered, in the hope that my over zealous preparation means I can get to the 20 October without hating myeloma more than I do at the moment. It’s a thriller.

I have no shame in admitting just how important this is to me, and what I see in this as a milestone. One the one hand, I am looking to the end, fretting, willing and wanting myself to get to the end, having relished every moment in the dark like I have done in previous years. On the other hand, there is something about stepping up to the challenge today, despite this volume not being over, that makes my emotive score play in my head with my own personal montage, designed to get my tears flowing. This is about me.

And so, I guess all there is left to say is the BFI London Film Festival 2013 is now open.

I’m not going to lie, I’m underdressed for the red carpet. Oh and I am beyond mother effing excited.

EJB x

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