Tag Archives: cinema

♿️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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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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The Outside

I have always been one for enjoying the world outside my home. Flip the coin and I have also been one who has enjoyed wasting a day in my home. I think of all the times I indulged in the latter now, and I never imagined that it would become my existence. When I am at home now, if I am not in an uncontrollable sleep, I think about being somewhere, anywhere else. Part of me longs for it. I long for my old body and my old life, outside of N1 or Deeping. The reality is quite different. With my new body and my new life, I can find the outside world terrifying.

The flat is safe. I know how many footsteps there are from my bedroom to the toilet and back again. I can navigate most the hurdles that could possibly come my way in the dark, without a walking stick and more often than not, I can control who comes through the front door. The outside world on the other hand is a vast pit of unpredictability and danger. The general public equals danger.

I can count on one hand the amount of times I have left my flat for something that is not a pint of milk, by myself, since I was diagnosed nearly three months ago. I do not include hospital visits in this, because those sort of trips are controlled, basically escorted and all so very predictable.

Leaving the flat by myself feels naughty, almost forbidden and I am not sure if I like it. I want my independence, but I want that to come without the anxiety of falling over or being pushed in a crowd. People frighten me. They live in their own worlds and their worlds do not include My Myeloma. I do not want to walk around with a big sign around my neck that says “with cancer and brittle bones”, but sometimes I think it would be a good risk management tool. Just in case.

There are a lot of days now, when I do not need my walking stick. Hooray for pain control. That said, I would not dream of leaving the flat without it; it acts as my protector when there is nobody around to be my protector and even then, it doesn’t always work. People push, barge and shove. People do not consider what the stick is for and thus they are a threat. A threat to my bones and a threat to my long term mobility. Today, I caught two buses and on the return journey there were no priority seats available and nobody made one available. I am not sure if I would have done this in my former incarnation either. At the weekend, I ventured into a shop without my stick but accompanied by a five year old and a lady rather politely asked me to move or she would hit me with her buggy because I was blocking the aisle. I would not have said this in my former incarnation, but I may have judged the large woman standing in my way struggling to stand. Maybe this is karma.

I want to be outside. I want to do normal activities and not feel My Myeloma. Physically, this is impossible and until I address my current fear, psychologically, it is, erm… tricky.

My name is Emma Jane Jones and I have become a scaredy cat.

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