Tag Archives: film

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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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 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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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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Oscar Night

Every year since I was thirteen, I have stayed up all night to watch the Oscars. It is a stupid tradition that I have, but it is mine.

When I was diagnosed, many things that I would miss flashed before my eyes. The Oscars ceremony was one of them, and film more generally. By late Autumn, I had reconciled myself to the fact that I would not be able to watch this year’s ceremony whilst eating pizza in my pyjamas at Mamma Jones’ house.

Truthfully, my tastes have grown in recent years and I do not find the nominated films, especially this year, that exciting. The ceremony though, all 3-5 hours of it depending on the year, I love. Say what you want about the Oscars, it is a sycophantic night after all, but it is a night about a love of cinema and that is why I love it, because I love cinema. Everybody who knows me knows this, which you could see if your saw my text messages today.

I thought My Myeloma would take that away. Even yesterday, still under the influence of cyclophosphamide, I feared it could not be. I thought it would stop me enjoying something and doing something I have always done. Unfortunately, My Myeloma has reduced the amount of money I spend at the cinema and my ability to focus for 120 minutes. My short term memory issues may have made me (temporarily) enjoy films less, but it has done nothing to my long term memory. My long term memory loves films and it reminds me how much of my being is steeped in that passion.

So, tonight, I showed My Myeloma what for. I am still in control of something, and although it tries, it cannot take my loves away from me nor my traditions. Sure, it prevented me from completing the Annual Challenge, but I can work on that.

I stayed up all night, and I have every intention of doing it again next year for that is what I have always done. And the year after that.

My name is Emma Jane Jones and I heart film.

Oh, and special thanks to Matthew of Northampton for staying up all night with me, and assisting me with my screenings for the last few weeks. Much appreciated. Our night was sponsored by Becks, for we are classy. Becks Blue for me. I have a transplant to worry about.

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And another oh, not everybody was so enthused. See?

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EJB x

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