Tag Archives: LFF

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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October

As most of us, come mid November are trying to concentrate on the important things in life like the John Lewis’ Christmas advert or Kim Kardashian’s posterior, this Novemember, there is something holding us all back. Something niggling in the back of our minds like an unpaid gas bill… Chill. Relax. I am here to help. That something is the unanswered question, what the blooming jib jabs did Emma get up to in October?

Well, let me tell you. It’ll build up our defences against the festive cheer in our supermarkets.

In chronological order, I went on holiday, I attended many, many screenings at the London Film Festival and then I got depressed, and best of all, I did not want to talk to anybody about any of it.

I can sense your confusion, for two of those things listed above sound like annual highlights for the likes of me. They were. My sadness arose when I asked myself what was to come next and I had no answer. Since my relapse and being signed off work, my long term planning expired on the 19 October. October was to be my month of fun and then afterwards, I would focus on my treatment and my transplant. I have always managed my myeloma like this, in bite size chunks. The problem is, my treatment is unpredictable and whilst this is nothing new, at the moment, I find it almost impossible to plan anything that is not about myeloma. Hell, because of my stubborn paraprotein, we can hardly plan anything related to myeloma either. It made it very difficult for me to see a positive after my last screening. In fact, I felt leaving the last cinema that my fun had just stopped. The limbo and the waiting is not a new revelation, and most the time I am content with that. October’s issue? I knew that I had nothing specific, nothing exciting like a holiday or the London Film Festival to look forward to. They were in my past. My future, as things stand, is uncertain. I do not like this one bit.

I need the a buffer.

I find it very difficult to admit to myself that I found a luxurious holiday and the viewings of 20 arty farty film bittersweet, but I did. I struggle not knowing when I am going to get to do them again. Imagine that for yourself. Worse than that are the times when that specific when becomes an if, and then what you get is somebody who feels quite sorry for themselves who wants to shout crude words as loud as she can and unleash he anger by punching things. Of course, she cannot punch things because it would hurt her back, a knowledge which creates more pent up frustration. Furthermore, when I vocalise these things, I do not just upset myself and I am ever mindful of that. My immediate response last month, was to keep all this to myself.

That approach never works for me, as the uncontrollable three hour nap after a counselling session on 3 November proves.

The enjoyment I had over the first three weeks of October would not have been possible had my body not struggled through my third treatment cycle in September. Keep up with this next bit because it is a complicated timeline involving too many numbers. The chemotherapy had given me a neutrophil count of 0.48 and a white blood count of 1.3 on 25 September, and thus a decision was made by the Medically Trained People to cut the cyclophosphamide out completely for Cycle 4 and halve the Revlimid dose. It does not take a genius to work out that less drugs mean less fatigue. It does not mean no fatigue, however but it meant that I had noticeably more energy for those 28 days.

Cycle 5 started on 23 October and with that came the return of all the strong stuff, the impact of which was almost instant. It was a noticeable change that just happened to coincide with the morbid thoughts. It was a change that meant that I could see the difference between drugs and less drugs, and I do not know quite how I feel about that difference on my life. Also on this date, I was told that there is still no timescale for my transplant. All I was told is that my paraprotein had to get to at least 10 (it was 15 on 25 September), before I could get a referral to the People Trained in Stem Cell Transplants and then, any transplant would be at least two months after that. More and more limbo.

Consequentially, as happy as I was to be able to leave my flat everyday for the ten days I experienced LFF and to walk around the ruins of Herculaneum, I worried that on the otherwise of the coin, I was experiencing a setback in my treatment thus extending the excruciating limbo further. For how was my paraprotein expected to reduce on less drugs when it’s reduction had already started to slow? Was it a case of history repeating itself? These were questions to beat myself up over in the nighttime. And the daytime. All the time.

It has been a few weeks now, and I can confirm that I am feeling better. Less maudlin and more receptive to John Lewis’ penguin. I know the limbo will not go away any time soon, nor will the uncertainty over the success of my transplant and whether that means that I will never be able to leave these fair shores again. I just have to find a way for these facts to not make me crumble. If I am having any sort of crumble when the clocks go back and it is getting cold outside, it’s the sort that comes with custard, not salty tears. As a dear friend told me at 02:00hrs one morning, I have many things I can do to fill the time in this limbo. One day, potentially one day soon, I’ll tell you all about them.

The moral of this story is that there are days when I feel like I am an old pro at all of this and there is nothing that can possibly surprise me, and I think I am managing it all well. Then there are other days, weeks or months, when the melancholy will come out of nowhere, taking me by surprise by squatting in my head, and I feel completely naive and scared. At the start of October I thought I had appropriate defences to protect myself, which included my holiday and sitting on my bum in the dark in a room full of strangers. Evidentially, I was wrong…. It is just the way the cookie crumbles.

EJB x

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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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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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