Tag Archives: Disability

Six Weeks

It’s been two months since I last published a blog and let me tell you this, it has been quite the two months. After having this wretched disease for over five years, I thought little would surprise me. Well, I expected the whole looming death part to have a different trajectory to the routine I am used to, but as I said, I expected that to be slightly different. I never considered what the steps will look like getting from the relapse stage , to the end of the line stage. I always assumed it’d be easy but increasingly, I feel I might have been far too optimistic.
Somehow, in five years, I had settled into an uneasy routine with My Myeloma. It’s quite simple really, I would have some sort of treatment, which would work for a bit, then it would fail, then the Medically Trained People would somehow magic up another treatment for me to start, and thus the cycle would start again. 
I had five years of this. Don’t get me wrong, some horrible things happened along the way; it shouldn’t make the list, but losing my hair is still up there in the shitty events. I didn’t really enjoy any of my transplants and I definitely did not enjoy the time I had to spend five days in St Bart’s because I caught Influenza B. On the plus side, I thoroughly appreciated any drug regime that could be taken at home. I had a few of those.
What am I saying, all of that is in the past? If the last two months have taught me anything, and I am still trying to decipher exactly what further lessons I needed to learn by the age of 33 about my cancer, is, that Myeloma is a load of fucking shit that if there were a hell, it should be confined to purgatory trapped under a full, infected bed pan, never to bother nice (even horrible) individuals again. Oh yes, just to keep you up to date, I have also learnt about bed pans recently. And sick bowls. And those cardboard things that collect one’s waste by resting on the loo seat. I know it all.
On 7th September, I returned to UCLH for a clinic appointment. Prior to that I had found out that the trial at St Bart’s was no longer working and I had been experiencing what can only be described as extreme and unbearable pain that I had blamed on doing too much on holiday. The pain itself was predominantly in and around my right rib cage. 
As I had self diagnosed every relapse since 2012, I had spent about a month begging for some imaging. St Bart’s took no action, I would question if the staff knew my name, but thankfully UCLH did know my name and once they had the necessary images, man, did they take action.
I was admitted to UCLH immediately on the 7th September following an appointment, during which my family and I were told we were coming to the end of the line of treatment. Not only that, but there was also something wrong with my neck. I say ‘something’ because I think it took me well over a week to get my head round what a compression on one of the C vertebrae meant. I don’t recommend it. I don’t recommend developing a mass that pushes through your rib cage either, Alien (or at least that’s how I like to picture it) style. It cannot be sugarcoated. I entered that hospital with Mamma Jones and Big Sister in a bad way. 

And that bad way only worsened over the next six, that’s right, SIX weeks…

I don’t even know where to start. If you are independent, like to toilet alone and enjoy walking around, I’d say what followed would be your worst nightmare. It was mine. 

You may have deduced that not all was or is well with my spine. Due to the compression and the location of it, I arrived at my bed to be told that I was no longer permitted to walk. As in, no walking at all. Not only was I not allowed to walk but if I wanted or needed to be moved in my bed, I would have to be rolled by four Medically Trained People. My head and neck, could not be elevated anymore than 30 degrees. Three weeks later, this changed to 40 degrees and the news that I could roll myself, but by this point, the damage to my ego had already been done. Not to mention the damage to my legs for not walking for three weeks.
Despite being in denial about it, shitting is a necessity that eventually cannot be avoided. The day I could not avoid it was Day 11 in hospital when there were only male nurses available. I’m a 21st Century Woman, so I went ahead and let the team of four roll me onto a bed pan. I did not say anything when they had to roll me again to clean my bum. Nor did I say anything the next day, during one of my five daily bedsore checks, when a different Medically Trained person discovered a lump of faeces stuck in my bottom from the previous day. 

That was a low point.
Washing myself alone, was and remains impossible and for the duration of my stay, washes were restricted to hand towel baths in my hospital bed. If I was lucky, the Medically Trained Person cleaning my nether regions might have even shut the window to my room for some privacy. Due to staff shortages, during the last week of my stay, no washes were offered and I went a week without being cleaned. Needless to say, washing hair is extremely difficult and something that has happened twice between the 7 September and now.
Thankfully, due to what I like to call ‘performance issues’ I was given a catheter for the first three-four weeks of my stay. After that, I relied on my good old pelvic floor muscles to stop me from soiling myself. How can that be when you cannot walk, I hear you ponder? The answer is long, boring, excrutiatingly painful and another blog post. In the interim however, you just need to know that I have a full back brace, handcrafted to fit my body and imagined perter boobs, which I am allowed to wear to mobilise. 
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This really is a story of never ending gibberish. Maybe grab a cup of tea. Have a wee break. I’d have one with you but my mouth is currently tainted by the delectable taste of 60 mg of steroids per week, so I am only able to stomach the taste of fruit juice. 

Where was I? Right, my health. In addition to the bony stuff, the really smart Medically Trained People had to find out what was wrong with me and if there was anything that could be done about it. This period felt like it would never end, with the feedback I was getting changing nearly everyday. I’m not going to regurgitate all of it, just trust me when I say it was very confusing and everyday resulted in me hysterically crying and Big Sister getting angry. 
I lost count of how many CTs, MRIs, ultrasounds and x-rays I had, but I know it was a lot. It was not uncommon to be collected by the porters, without any clue where I was going or why. I knew where they were taking me on week one, when I had five fractions of radiotherapy to heal my ribs, but as for the rest, it was not like I was in the strongest position to argue or question. I simply did.
Things went downhill relatively quickly. By Day 4 I had tested positive for Paraflu, which gave me a chest infection and resulted in me being relocated to an isolated room on a ward where the staff are nice, but significantly understaffed. One night, I rang my bell for 2.5 hours before I saw a nurse. On the plus side, it meant that I had my own room with a nice view over London. A bonus when you consider the fact that the woman opposite me on the shared ward addressed me as ‘Emily’ and wished me well. 
The hardest part of having the lurgy was that I did not see somebody without a mask on for five weeks. Talk about dehumanised. 
The chest infection persisted, so for extra buoyancy, I also developed sickness and diarrhoea and a temperature. It was lush. 

Notice how I am yet to mention My Myeloma? There’s a reason. My Myeloma failed to behave in the manner of which I have become accustomed. For the first time since I was diagnosed with the wretched beast, I was afraid of it. It wasn’t behaving how I have known it to behave. My paraprotein was the highest it had ever been, and no matter what drugs were tried or the volume of fluid pumped into me, my calcium would not shift below 3.0.

And still I carried on. It may be the biggest test of my willpower and personal strength (because I really have no meaningful life until I am rid of the brace), but I unequivocally told the Medically Trained People that I am not ready to give up with my life yet. As long as the treatment maintains a reasonable balance between quality of life and those dastardly side effects, count me in. Sign me up.

I’m not ready to die yet.

Unfortunately, we soon ended up spending some time thinking about my death. I completed my will and paid for my funeral. Once I was fortunate enough to be on a reasonable treatment regimen, I suffered from what I now believe to be called an Acute Kidney Injury. At the time, it was badged as something far graver than that. I cried for what felt like days. I got so angry with My Myeloma, I told it I hated it. I begged for a reprieve, identifying many people other than myself who deserved the award for ‘Most Deserved Recipient Of The Most Stubborn Myeloma in This Fair Land.’ I really am not saying that other people deserve this illness; I was just surprised to learn that I had not come to terms with the fact I have it. Death seemed so much closer than before I walked into clinic on the 7th September. I don’t know when it will come and that’s the scariest part. How long is my piece of string?
My need for tears grew when I was taken off my morphine, which I had taken in slow release form everyday for five years. There were nightmares and ticks, to accompany my sickness and diarrhoea. I won’t lie; it was a tough, sleepless few days.
Do not fear, I will not prolong this anymore than I need to. They require near constant testing, but for the moment, my kidneys are behaving. It took a week or so for them to turn around. For how long they’ll stay in this state, only time will tell…

Six weeks after I entered UCLH, on 19 October, after a lot of pushing from my family, I was discharged. Gone were the at least daily bloods, out with the cannula resulting in the constant beeping of unanswered alarms. Goodbye to the four hourly observations, even at 3am. Welcome to sudden and ill prepared loneliness with an absent of nurses. So long institutionalised regime. Hello privacy. After six weeks, I am to fend for myself once more. 
Just between us friends; It’s fucking terrifying.

The view from my hospital window

EJB x
P.S. New treatment regime (Velcade twice weekly for three weeks;20mg Dexamethasone the day before, of and after Velcade; Veneoclax eight pills daily

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The Cleaner

It may surprise many of you to learn that despite my current financial woes, I continue to employ the services of a cleaner. The cleaner comes fortnightly, and her services are paid for out of my disability living allowance. It is a necessary extravagance and it is an extravagance that I look forward to and loathe in equal measure.

My excitement at having a clean house at the end of a three hour visit is obvious. The awkwardness that I encounter for the duration of that three hour visit is almost enough to get me on my hands and knees attempting to dust the skirting boards. Almost, I cannot get on my hands and knees to dust the skirting boards. There has been an empty bottle of water on the floor in my kitchen for two days, which I have been unable to pick up. I really hope she spots it today. Imagine what would happen to me if I partook in continuous exercise below the waist. Imagine indeed… At best, I would be a moaning minny. At worst, I would be on the Oramorph demanding another X-ray.

Let us face it, I also have a strange middle class, but on benefits, guilt of paying somebody to come and do my dirty work, whilst I lie on my sofa watching TV. I am lying on the sofa as I type this whilst the cleaner cleans. She’s two metres away from me making a vigorous scrubbing sound by the kitchen sink as I snuggle into a cushion tapping into my iPhone. I should really move into my bedroom now, but my back hurts, so I am multitasking, working up the courage to stand. She does not know why I am on the sofa snuggling into a cushion. What must she think of me?

A fortnight ago I made a point of taking my medication in front of her, and left a few boxes of drugs out in my room, so she could guess there was more to me and my story than a fat, lazy and inept housewife. That is what having a cleaner makes me feel like, apart from the housewife part. I am no a housewife, as the rotten vegetables in the bottom of the fridge are a testament to.

There are days when I would love nothing more than to be able to clean my own flat. I am in no way exaggerating. I am not saying I enjoy the act of cleaning, I would just like to be able to do it. For well over a month I have needed to adjust the valence sheet on my bed, it is a task I yet to complete because it involves lifting my mattress and I struggle to lift up my Le Creuset. Consequently, I feel like my bedroom resembles a squat with it’s exposed divan and collection of syringes.

Life is tough. Real tough.

My cleaner does not know that I get up early before her visits to make sure things are as tidy as I can make them, that the bedding is clean and dry and the dishes are put away, nor does she know that these activities tire me. She does not know that I do a disproportionate amount of dishes in my flat to make up for the fact that I cannot empty the kitchen bin.

Nobody tells you that this is a side effect of myeloma; uselessness.

I do feel quite pointless right now. Thank goodness I know that I make the mess and dirt in the first, otherwise I would be lying here questioning my very existence.

I just want to get under a blanket and snooze. Goodness knows how I am going to manage this in a fortnight’s time when I am crashing on my steroids and unable to get out of bed. The experience would be so much worse if I am in my pyjamas. There is nowhere to hide.

What is the etiquette when nature calls when it does not call that often? Heavens above.

On the plus side, for all the awkward and critical feelings I have right now, I know that in an hour’s time, my bed will be changed, my flat will be clean and there will be a lingering smell of bleach.

Before that happens, I have to get over the embarrassing issue of payment. I believe some people would refer to my concerns as a ‘first world problem’. My riposte would be, ‘myeloma’.

EJB x

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Priority Seats

Many things in this world irritate me. At the moment, not just at this moment in time, but in limited life, my biggest irritant is the public perception of my disability and the concessions they do not make for it. Right now*, I know that I am particularly angered by it because I opened the WordPress app to tell you about many things that do not involve how I walked into a hospital waiting area to find no seats free and nobody willing to give up a seat to me.

I am now looking at the many faces in this room having disregarded half of them as poor people whose bodies are riddled with cancer like me and thus are entitled to a seat, imagining the quick deterioration of the days of the rest of them with expensive burst water pipes resulting in days of cold showers, broken favourite dishes, accidentally soiling themselves in front of their colleagues, lost heirlooms and cheating spouses. That is what the healthy visitors deserve for not giving up a seat to a cancer patient with a walking stick. Actually, in my mind, that is the absolute minimum of what they deserve for not giving up their seat.

Perhaps if the room I was in had windows to the outside world, rather than to a white corridor, I would feel more tranquil right now. I would have no desire at all to take people’s legs out with my walking NHS issue walking stick. Of course, if I did give in to that particular impulse, they may then have a genuine need of a seat and that would do me no good at all.

Just an update for you, I am now in a seat. Not because somebody who did not need it gave up their seat, but because I was assertive and stormed towards a seat the minute it became vacated. The next thing I knew, the seat next to me had a new occupant and I had to listen to a gentleman drop several hits about why his wife needed the seat more than me for five minutes. I responded to this by removing my earphones and telling the gentleman and his wife that I too had cancer, and moved my walking stick into plain sight. I then really showed them, by moving to an empty seat when one became available so the gentleman’s healthy wife could sit down next to her husband. Fools.

Fat and young does not make me less worthy of assistance, especially when I accidentally missed last night’s MST dose.

If it is this difficult to get the public to show sympathy or is it empathy, in a cancer centre, how the hell am I expected to survive in public? In the public I see signs for priority seats, but does anybody else? I am not elderly, I do not need a wheelchair and I do not visibly have a part of my body missing. Myeloma can be invisible. Just like, it would seem, as invisible as many people’s manners.

For the first time since my relapse, I found myself on the tube last Saturday Within five minutes, I knew it would be an experience that I would not be repeating for a while. It was an experience where people push and shove and hold onto a seat like it is the their only child. Of the three trains I had to get for a 30 minute journey, none of the stations had stair free access, and only on one of the trains did somebody give up a seat for me. On the first train, I had to contend with somebody who would not move to allow me to disembark, which resulted in my twisting my back and suffering for doing so for the rest of the day. The next day, I got on the 38 bus where somebody had just sat down in one of two free priority seats, before I sat down on the other. The person in question was in her twenties, and audibly tutted as my bum touched the patterned upholstery next to her. She then got up, and moved to another seat behind us with her boyfriend who I did not see behind me. I felt evil. Should I have explained why it was difficult for me to climb up a step to access these seats on a moving vehicle? Should I have to?

I know people manage this type of aggressive travel everyday, but I, to put it simply, cannot do it anymore and I hate everybody who makes it impossible for me to do it. It makes me feel so sick. Sick of this stupid myeloma.

Having an invisible disability is the pits. It is just the pits. Pits. Pits. Pits. I am convinced that a number of people who see me with my walking stick think it is related to my girth and just deserved. I am also convinced that there is a much larger majority, especially in London, who just do not see the stick at all. It all makes stepping outside my front door unpredictable. I have had 26 months to get used to it, but I am still scared by the dangers that lurk behind people not knowing that I have myeloma, let alone the dangers of people not knowing what the dangers of myeloma are (e.g. drunken fool at wedding).

I think I am as strong as I can be. I do not live solely in my flat and I try not to shut myself away, despite home being far safer and more comfortable for me than anywhere else. People, and I do use that term generally, do not see the struggle I face when I leave my flat. I get taxis to make it just that little bit easier, but I am on benefits now, so they have to be limited. Do I give up going out or do I brave the outside?

Travelling and my entitlement to a seat over a healthier person, an entitlement that I am aware some might not agree with, is not the only prejudice I face as a Disabled. I call myself that now. A Disabled; it’s worth it for the cheap cinema tickets. You might have read all of this thinking I just need to be a little bit stronger, a little bit more assertive, have thicker skin and maybe drop a few more Diazapams to chill out before I venture into the outside world. If that is indeed what you do think, I have one more story for you…

Two weeks ago, I found myself walking with my stick at my usual slow pace, alone through Leicester Square. If you are not familiar with said square, it is not the safest place if one needs to avoid crowds and people stopping unexpectedly to take photographs of the M&M store. Anyway, necessity made me go there, and I was managing that, the way I manage most things, by pretending I was not scared of it. As I made my way from one end of the square to another, I walked past a badly dressed, but seemingly popular street performer. As I walked past him, he interrupted his performance to draw attention to me, and said into his microphone, “see that woman, she’s faking, she does not need that walking stick”. The crowd laughed and I felt humiliated. My humiliation resulted in cowardice and I just continued walking pretending that I did not hear what he said, nor the laughter of the crowd. Two days later he and I were there again, but this time, instead of taking the shortcut by him, me and my walking stick took a long detour, to save any more potential embarrassment. I was a chicken.

Since the incident, I have obviously rehearsed what I should have said to the man on that day. I should have explained why I had a walking stick and explain all the reasons why I was not faking. I could have just lifted up my shirt to reveal my radiotherapy scar. Of course, the opportunity has long gone, and boy oh boy does that make me angry or so very angry. On a very personal level I am punishing myself for my cowardice. I fight something very difficult everyday and I could not stand up to a bully who makes his money in an upside down hat.

More broadly, what does it say about people that the man thought it was okay to say what he said and the crowd of people thought it was acceptable to laugh at me? I suppose it says much the same thing as people who sit in a Priority Seat when they do not need to, and the same as people occupying seats in a cancer centre and not giving them up to somebody who has cancer. I just do not quite know what that is.

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Of course it is ‘ruddy hilarious’ when you don’t need a priority seat

I will finish with this thought… The priority of My Myeloma should be my treatment, but more and more with this relapse, I am finding so many other things that cause more unnecessary stress and anxiety. They are things that not unlike treatment are out of my control, but could be remedied if People (that general term again) were more aware of our rights. If People did not want to give their time to consider our rights, then the least they could do is show some manners, or on a more basic level, know right from wrong.

EJB x

P.S. My newfound concerned for the rights of disabled people, is in no way, selfish. Mamma Jones just installed me with manners, that is all. I’m speaking out to all 46 of you for the benefit of others.

* To be clear, the ‘right now’ in question was yesterday… I got a wee bit side tracked with medical information, being impressed with the installation of my cannula, getting a dose of Zometa, getting a train (which highlighted the issues raised in this blog) and going to a seven year old’s swimming lesson.

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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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Ever Increasing Pain

The quick deterioration of my movement over the last month, has been an unwelcome surprise and it has been something of nightmares. Cancer I can handle. Being bed ridden and unable to climb into the shower? Not so much.

Two months ago, I was worried that my movement had improved to such a point that I could not in all honesty, carry on without contacting the Department of Work and Pensions. Of course, I still had my good and bad days, but on my good days, I could challenge myself. I could almost feel normal.

Then there was a wake up call. A big fat, need my walking stick to get off the toilet, wake up call.

I am now at a point where my movement is so restricted that in the last few days, I have been bed bound, tripping out on a healthy cocktail of Oramorph and Diazepam, contemplating the meaning of life. Needless to say, I enjoy this return as much as I enjoy a Black Forest gateau with extra cherry. In case you were wondering, I do not enjoy a Black Gateau and I most certainly loathe the cherry that any extra would be a waste.

Forgive the length, but the following is an honest assessment of my recent dealings with Mr Pain;

Monday 12 May 2014
I was in Rome, and somehow, I managed to walk five whole miles. It was accompanied by lots of complaining and ounces of pain, but I did it with bells on.

24-27 May 2014
In an act of dogged independence, I repeated Rome’s sightseeing in Berlin, only this time, I did it whilst carrying luggage.

Evening of 27 May 2014
On a train from Southend Airport to Stratford, I decided to lift a 9kg suitcase. This was an error in judgement, I know. The truth is, I forgot that there was a reason why I should not be doing heavy lifting. Subsequently, on a train from Stratford to Dalston and then on the short walk home, I realised that I could not use my left shoulder. The pain was unbearable and it remained so for the next three days.

Thursday 29 May
I had an appointment with the Medically Trained People, during which, I received a royal telling off for doing too much. Fortunately, as the disease was not active, the pain was believed to be muscular. There was another telling off and I was sent for an X-ray or two.

I started to write a blog about me being a forgetful fool. It was full of mega LOLZ, so I apologise for declining you of that gift. As X-rays were a novelty, I also took these rather attractive photographs reminiscent of days gone by.

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The X-rays revealed nothing. I however, had to resort to the dreaded Oramorph to allow me to sleep. It was Oramorph by night and a sling by day.

And then the pain slowly went away.

Friday 13 June 2014
The day started with me starting one of my usual, riveting conversations with Housemate. It went along the lines of ‘do you believe in Friday the 13th?’. He said no, and that was the end of that.

Shortly there after, a sharp pain appeared in the middle of my back to the right. The pain was such that I could not bend. I could not laugh and I struggled to sit. In short, it felt very familiar to me and I was worried enough to inform the Medically Trained People. The pain was also such that I once again, reached for the opiates. I also started double dosing my standard MST dose twice a day from 30mg to 60mg.

That day, was Velcade Day, so I was seen by another Medically Trained Person who tested my leg movement, advised bed rest and sent me for another X-ray. The x-ray had to be done in Accident and Emergency, which is only noteworthy because I had to strip in front of the radiographers. I was wearing a pair of flesh coloured Spanx, so I am sure they enjoyed that. The pain was such that I cried and went home to cry some more. I was offered a hospital bed, but I declined.

Sunday 15 June
The pain persisted, shooting up my spine whenever the opportunity presented itself. I say opportunity, what I mean is, whenever I breathed. It is difficult for me to give an objective opinion about my pain, I’ve had it for too long to be able to describe it. I knew that this pain was different because every time I attempted to get out of my bed, my back felt like it would snap in two. Every time I stood up.

I phoned the on call Haematology line, shamefully, with tears once more and I was advised that my X-rays were fine. I was told that there was nothing that they could do, and I could take more Oramorph and paracetamol. It’s not important to my tale, but the person I spoke to had a speech impediment and every sentence was followed by a low snigger. It was most irritating.

Monday 16 June
The pain had eased slightly, but I was asked to come into Clinic on the 19th. Turns out that appointment was not about my pain, but to be safe, a MRI was ordered.

Tuesday 17-Saturday 28 June
I went into my overdraft using taxis to get me from A to B and back again. On the two occasions when I attempted public transport, I regretted it so much, it reminded me of the last time I accidentally ate a Black Forest gateau. Plans were cancelled, and I spent a considerable amount of time in bed, hating myeloma and everything it stands for. I made empty promises to myself that I would stop pushing my body, for I believed that if I stopped pushing my body, all would be well and my muscles would behave.

During this time, not because I am a badass, but because I value my brain, I chose not to take any Oramorph. I chose functioning over pain. I functioned barely, for there is only so far one can afford to travel by taxi. Peckham Rye, for example, was a no-no.

My physiotherapy was cancelled indefinitely.

Sunday 29 June
I woke up, intent on travelling to Cardiff. I sat on a seat it is customary for all Western Europeans to sit on in the morning and with that act, I screamed as a shooting pain made itself known from my lower spine reaching all the other parts of my body. It pulsated. I stumbled to my room and cried out in pain. I could not describe it, but at the point it happened, I would rate it as a 10 on the medically accurate pain scale.

To cut a long story short, phone calls were made and before I knew it, I was in A&E once more, this time with the privacy to change into a gown, awaiting an X-Ray. Whilst waiting, a finger was placed up my anus.

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The pain was unbearable.

I went for the X-ray, pleased that the technology has advanced enough that I did not need to get out of the trolley. The technology has not advanced enough to get a clear image, but that is by the by. My spine was all a spasm.

Once again, I was offered accommodation, but I chose the comfort of my bed and my flat over a shared ward with old ladies and their commodes. I was prescribed frequent, strong painkillers and home I went. I remained there, spaced out until this morning.

Tuesday 1 July
Today, I had me an MRI scan. It was less painful than I anticipated, but the two diazepams I took prior may have had an impact on my perception of time.

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And now I have to wait… There will be paranoia and there will be pain. I just hope that we will shortly get to the bottom of this.

Myeloma is incapacitating. It needs no further encouragement from spinal difficulties. I will manage my treatment, I do not want to manage the pain on top of it. The pain, this pain, prevents me from living.

I hate it. No roller coasters I can handle. I need to roll over in my sleep.

EJB x

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The Mobility Enhancer?

Today, apart from the work and the tiredness and normal feelings of insignificance, I am awash with excitement. Dare I say it, the excitement is palpable, that is, if I had not spent my day talking about risk management. I am excited because tomorrow marks my first physiotherapy appointment.

A build up to anything causes excitement, or apprehension, if your glass is half empty. On this subject, my glass is three-quarters full. I was referred to the physiotherapist in December and a mere four months later, I actually get to see whether it is worth it. It’s been a longer wait really, for I asked for a referral when I was on PADIMAC, way back when in 2012. I believe on that occasion, my request was immediately dismissed as folly.

So much hope for my immediate future rests on the success of it. One could say that I am setting myself for disappointment, but keep up, my glass is half full. I do not have a barometer for improvement, I do not know what improvement will look or feel like. Right now though, I think that anything is better than what I have right now and what I have right now, much to my initial denial, is chronic pain. That is pain, to varying degrees, everyday and every night.

I am a realist, it’s not going to get me doing cartwheels nor is it going to get me on a roller coaster, but it may mean that I can stand for longer than I can stand right now, or sit for longer than I can sit right now. I might be able to be seen less often with my walking stick. It may possibly be able to walk that little bit further, or walk that little bit further and not have to hide the pain I am in, because I am not in any pain. I then, could try and address my ever expanding waist and boost by deflating confidence by being able to be that little bit more active than I am at the moment. It might even lead to me not looking at Vauxhall and Lambeth Bridges with longing and melancholy, remembering my lunchtime walk of old. Maybe, I’ll be able to look in the fridge without worrying if I will get up again. Then, there is the prospect of being capable of glancing at my blind spot. Hell, it may even allow me to think about my body just that little bit less than I do at the moment.

The sky is the limit, or put another way, anything is better than nothing and that excited me.

In case you are thinking that lytic lesions cannot be cured by physiotherapy, let me bring you up to speed. December’s MRI scan found that my lesions were improving and it was suggested that the continued level of my pain was part muscular, and thus, I may benefit from physiotherapy. Not just any old physiotherapy, tomorrow, I will be stepping foot into a magic place called the Royal Hospital of Integrated Medicine. The building is a shit hole, but hopefully, beauty will be on the inside.

Tomorrow, the chances are, I will be singing from a different hymn sheet, but the hopeful part of me, today at least, is getting just that little bit excited. It won’t happen over night, but who cares? I love a project.

EJB x

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Transport for London

My hatred of public transport continues to escalate as my need to use it increases. That pre-rehearsed speech I have had in my head about the general public’s disregard and prejudice towards those with disability, becomes ever closer to an actual thing I am going to spit in a stranger’s face when they do one or more of the things that make it very difficult to live with an almost invisible disability in London.

The obstacles I face when I get on the bus, seem great, and my need to find an alternative means of transport in the form of a taxi is increasing. I say ‘seem’, because I have no idea if I have wound myself up to find issues or whether the selfishness of humankind really is on display every time I venture outside my flat.

I thought travelling would get easier over time, but it is not. It is not getting any easier. The act of using any mass form of TFL supported transported does not empower me not does it offer me independence. Travelling may get me from A to B, and then to C, but in order for me to do that on a bus or tube, I am slapped around the face by my limitations and illness, and my is that a rotten feeling to have every time I use an Oyster Card.

A few weeks ago after my treatment, I found myself using my Oyster Card on Tottenham Court Road and I think it would be a fair assessment to say that I was not happy with the situation I found myself in. By situation, I mean having to get the 73 bus northbound. Experience tells me that this particularly bus is populated by selfish bunts. I used to use said bus regularly.

Anyway, where was I? Yes, I was on the bus, and over the course of my journey, I drafted and submitted the following, which sums up my thoughts about TFL quite nicely;

“Vehicle reg: LJ11 EFK

I got the 73 bus from the Warren Street stop towards Stoke Newington.

I have concerns about the provision for disabled passengers more generally on London buses. Having previous fractured a vertebrae when a bus broke, I am understandably cautious when I am on a bus, and this includes a bus driving before I have had a chance to reach my seat. I walk with a walking aid. The issues are made more difficult by passengers not understanding the priority seats.

Today, however, my usual concerns were exasperated by a particularly rude bus driver. As I sat in the priority seat nearest the driver, my walking stick fell to the floor. Not a big deal I know, but it apparently warranted the bus driver shouting at me twice, on a full bus, to look after my stick and agressively shout ‘secure your stick’. Now, I have just had chemo at UCLH and I have a bag of drugs in one hand and my handbag in the other, so ‘securing’ my stick is somewhat difficult when I have nowhere to put it. It is something I find difficult when my hands are free. This is not the way to speak to disabled people. The driver has no idea why I have to walk with a stick and he should be respectful of that. There is much stigma attached to being disabled, and being shouted at by a bus driver because of my disability was humiliating and unwarranted.

A falling stick may make noise, but before he opened his mouth to voice his annoyance he should have considered my annoyance at having to walk with one and everything else that encompasses. It is ignorance.

Further more, at Kings Cross, there was another passenger with a Zimmer frame, whom the driver refused to let enter at the back of the bus (she did not seem capable of walking a far distance) and thus she chose not to get on the bus because she could not navigate the bends at the entrance.

It was an infuriating journey.

As I mentioned before, TFL’s approach to disabled passengers is far from perfect (I would suggest more priority seats for a start), and this bus driver just provided further evidence to support my view that the appropriate concessions are not made for disabled passengers. I do not think it is much to expect a few concessions and understanding from TFL employers/contracted staff, when one is attempting to remain as independent as possible and unfortunately, this was not afforded to me today.

Regards,
Emma Jones”

Nothing I do, will inspire a cultural shift in the commuter population; it will always be insular and self serving. I doubt, whether my complaints will make the driver think twice before he is rude to somebody again. Externally, the impact of me complaining was minimal. Internally, it made me feel a hell of a lot better. Especially when I received the apology. I have found a new pastime.

“1 April 2014

Ref: 4311555

Dear Ms Jones,

Thank you for your recent e mail regarding the driver of the route 73 bus you travelled on from Warren Street on 20th March.

I was concerned to learn of your experience. We expect our staff to be courteous and sympathetic towards our disabled customers and behaviour such as you described is unacceptable.

I can confirm that from the details you gave, we have been able to identify the driver in question who has since been interviewed by his manager where he was advised on all aspects of your complaint and reminded of his responsibilities. He will also be closely monitored to make sure that there are no further incidents of this nature.

Thank you once again for taking the trouble to bring this matter to our attention and I hope that you will accept my apologies for the inappropriate behaviour by a member of our staff.

Yours sincerely

Mrs X
Customer Services Manager
Arriva”

Small victories. They make me feel less weak.

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Inside I’m Dancing

Once upon a twenties, there was a girl who loved nothing more than dancing and sweating whilst dancing and grinding and say then day that particular movement was dancing. Said girl’s only aerobic exercise for a long while, was the dancing. The pleasure she would get from the shuffle to a deep base would be evident when her hands would creep up over her shoulders. She was no ballerina. She did not have the elegance of a ballerina. Her dancing usually was reserved to prancing around her bedroom in her pants or it was directed towards a DJ booth. She had rhythm. Unsightly rhythm.

Said girl no longer dances. Not really. She has lost her rhythm. Her movement is restricted to a wobbly shuffle that she calls walking and that only occurs because she is heavily medicated. Her government has assessed her and deemed that she should only walk 200 yards at a time, thus pulsating her radiotherapy experienced hip really is out of the question. If she did not find twerking distasteful, the cement in her spine would still be a reason enough not to do it. Her arms are similarly weak and as sometimes these limbs cannot be raised above her shoulders, the distinction for her between walking and dancing, she felt, would be slight.

People adapt obviously, and our heroine has become partial to some private bed dancing, which is much cleaner than it sounds. It involves lying flat on a mattress, a bed really because she would struggle to get down on a mattress, and then wriggling her feet and hands. The activity usually takes place when the lady in question is intoxicated and attempting to recreate the euphoria of yesteryear whilst proudly listening to Katy Perry’s Fireworks. For her, this activity is still rare.

Rarer still is any form of publicly busting a move. Walking with a stick in hand is embarrassing enough for her as a 29 year old experiencing London nightlife, but dancing, her new ‘dancing’ would be impossible. Living in her brittle shell makes it difficult for her to experience London nightlife, so she would be unlikely to open herself up to the danger of being pushed and prodded on a crowded and slippery dance floor, when she is already having to manage the increased danger from the public that emerges through alcohol. There would be murder on the dance floor.

The loss was felt, until one day, after a few sherbets, in a room protected by her dear friends, she danced. For ten minutes before having to sit. She did not grind and she did not twerk, nor did she throw her hands in the air like she did not care. Importantly, she did not want to stand on the sidelines feeling self conscious and grieving. Deprived of obstacles, armed with her stick for back support, she moved from left to right to the sound of a beat. There was some backwards shuffling and even some sort of movement with other people. With stick in hand she moved from side to side. And she smiled.

Nobody bashed her and nobody drunkenly grabbed her neck and pulled it down because they were a moron, and nobody attempted to twirl her. She moved and she adapted.

It hurt her like hell the next day though, but if anybody were to ask her, she would have said that it was worth it.

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Planes, Trains and Automobiles

Sometime ago, I got the number 30 bus from Hackney Town Hall to the stop nearest to my flat, and as I stepped onto the curb on the road they call Ball, I remember how elated I felt, because finally, after months of Mamma Jones driving me places, taxis and the Patient Transport Service, I had regained some of the independence I lost with myeloma. Many months have passed, over a year’s worth in fact, since that happy time, and I can now without any hesitation that I no longer feel that way when indecently travel. The novelty has well and truly warn off. The adrenaline I felt that day has long been superseded by apprehension. Apprehensive and loathing to be precise.

Now, with the PTS a distant memory, any travel I undertake no longer feels a matter of routine as it should. Travel is an effort. It is an effort for a number of reasons, not least because I have become a lazy bum who loathes strangers, particularly the sort of stranger who does not know what a ‘Priority Seat’ means. It is a bummer, especially now I am getting out and about and attempting to enjoy #londonlife.

I fear the unknown with travel. I fear what will happen if I get tired whilst I am doing it, I fear people bashing me and not letting me sit down, I fear that I cannot always be independent when I am doing it, I fear that my face will not be able to disguise how uncomfortable some seats are for me, I fear falling over and I fear what will happen if my mode of public transport breaking down. These fears go through my head every time I travel and thus it is the reason why my current, preferred and used mode of transport is a black cab. Trust me, taxis are an expensive way to travel, but it saves my precious energy from worrying about being forced into delivering my much mentally rehearsed, vitriolic speech to people who fail to surrender the priority seat when it is needed. The speech by the way is awesome, designed to make the recipient go home and flush their head down their toilet with their mouth open. Sometimes, I admit, it can go too far and include a certain word that is not ladylike and I am working on that. Ignorant norfolkers.

I have had the time to dwell over my ability to travel and I have come up with certain rules to reduce my fear and manage my hatred of humankind and they are as follows:

🚌 Do not travel during rush hour
🚌 Do not leave the flat without my stick
🚌 Do not get on a bus with any form of luggage
🚌 Never go to the top deck of a bus, because you cannot, and on the rare occasions you have done it, you have paid for it instantly and then well into the following day
🚌 Never stand when a vehicle is in motion
🚌 Prior to travel, if concentration is proving impossible and the bagS below the eye have turned a deeper shade of purple, throw money at the problem
🚌 Avoid the aisle seat, as turning corners can really be treacherous when you are sitting next to somebody equally as large as you are
🚌 Always be polite to those under the employment of the travel company, always, and if this includes saying ‘hello’ and ‘thank you’ to the bus driver then so be it, it could lead to a free upgrade
🚌 If disaster strikes, ring somebody and talk incredibly loudly about the fact you have myeloma which is a cancer with no cure

Some of these rules are easier to follow than others, and it is on the bus where I find myself becoming a rebel. Not a rebel as such, because in no way, is it enjoyable.

In my mind, buses are the most dangerous and troublesome form of transport and nothing TFL can tell me will convince me otherwise. Buses are dangerous for many reasons, they were dangerous before I knew they were dangerous. If I knew what I know now, in early August 2012, I would never have stood up on a bus as it was breaking and thus I would not have ended up clutching a lamppost on Shaftesbury Avenue crying and too shy to ask the policeman walking past me to call an ambulance. Now, being the know it all I have become, I resist the temptation to stand up whilst a bus is in motion as noted above. Bus drivers, unfortunately, are not privy to my rules, and they frequently drive their big red vehicles before I am safely in my seat. I find this most inconsiderate. At least I have now worked up the courage to tell the person next to me that I will not stand up to let them out until the bus has come to a complete stop; it is always met with confusion. I do not get on with luggage at all because I am not agile and any lifting has to be saved for the train, in the event that I can find nobody to assist me or if the train is busy. That is also a consideration I have and one I faces and flailed today.

My main issue however is with the public. On the buses (and they could be getting a bad reputation because I use them the most), on the train and on the tube… My impression, which of course is skewed, is that people ignore those with a disability, unless you have a visibility disability or a blue rinse. I was once asked to get out of my non-priority seat by a man in front of me in a priority seat to allow an older lady sans stick to sit. I said no. On another occasion, I walked into a bus outside UCLH with a bald head and a large bag saying pharmacy, and asked for a seat and nobody got up. I asked again and nobody got up. More generally I am encountered by competing eyes looking at other like minded seated people, wishing that they win in the competition of whose manners kick in last. It is a headache and one that I fret over again and again. Two years ago, I wager I was one of them. Actually, I was not because I was a top deck sort of gal.

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Sod that, give me a badge

I said once that my life is full of new challenges now, and this my friends is one of the greatest practical ones I have facing me, and it is one that I should face everyday but sometimes, the worry and effort get the the better of me. Home is safe. Taxis are comfortable.

There is one mode of transport of which I would not complain about (apart from pain from sitting and sitting leg room) and for that, I wait with breath that is baited. Seriously though, can somebody please just put me on a plane.

✈️

EJB x

P.S. Some may call this attention seeking. I call it preservation.

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Bureaucracy – An Update

Some time ago, I attempted to explain the form filling nightmare that is the British benefits system. To be fair, I expected to fill out forms, just not as many as I did, nor did I expect to have to prove that I was not a Big Fat Liar. Three months on, however, I am in exactly the same situation I was in before I spent a considerable amount of my time writing my name and national insurance number over and over again.

If one thought that as policy makers, governments worked at a snails pace, it appears they work at a similar speed in all other areas under their remit. I am generalising here, incorrectly of course, for our Government is great, I am only talking about the Department of Work and Pensions (DWP), and then I am not even really talking about the DWP, for they have passed my claim on to a contracted out company for assessment. My claim has been under their assessment for 92 days and they are yet to have looked at it. Let this be a lesson to you all, contracting out services works!

I have applied for something called Personal Independence Payment, which replaced the Disability Living Allowance. I am well aware that I do not need the full payment this benefit can offer. I do however, find that there are certain things that cost more money, now I’m a a disabled. Travelling costs more money and it is more difficult than it was before. I get more buses because I cannot walk as far, I even venture on the tube now, even more occasionally than that, is the luxury of a taxi because I get too tired to move and my back feels like it is going to snap; these may sound like small things to you, but they cause me no end of headaches. In my flat, I cannot properly clean and I cannot carry my groceries. I attempted the Hoover yesterday, and let me tell you, today, I very much ache, despite my double dosing last night. There are small adaptations to be sure, but adaptions that cost me money that I do not have, or ruin my few good hours a day with unnecessary pain.

It is not just your money I am after. I really and truly want the government to recognise me as ‘disabled’. It would well and truly make my disabled life much easier, if I were qualify for the national concessions. It would make my bus journey safer and it would give me more energy when I am being driven. It would mean that I would not always have to say why I am disabled.

I have been waiting for the outcome of my PIP claim, before I pursue local options, as it means that I would have to jump through less hoops.

I am becoming doubtful, that I will ever receive extra support. I mean, I get up and go to work, so why do I deserve any help?

I chased my claim last week, not by actually running after it, but by picking up the telephone and calling the DWP. After fifteen minutes, I was told that my claim had been received (they do not send acknowledgments or holding letters), and it had been forwarded to ATOS to process. It was forwarded to ATOS on the 26 September. Helpfully, I was told that this was a long time ago and it should have been processed by now, for this process should take between 6-8 weeks. I was then given a schpeel about the various stages of making a claim, and I was told that they may contact my Medically Trained People (paraphrasing) to see if I am truthful (paraphrasing again). That was exactly the same information I was given in September, and given the fact I had to provide contact details, I found this statement outrageously shocking. Oh, and I may be asked to attend a physical assessment. The DWP could not help me further, so I was given the telephone number of ATOS, to hasten a response directly.

Twenty minutes later, I spoke to a lady at ATOS, who informed me that they were in fact in receipt of my claim, and I needed to be aware that when my claim is being investigated, my Medically Trained People will be contacted and I may be asked to attend a physical assessment. I asked why it was taking so long, in my polite voice, stating the timescales I had just been given by the DWP, to which the the lady became agitated. According to her, the DWP had no right to say that to me, indeed, the DWP is to blame for the whole thing, because they underestimated the number of PIP claims to be processed when they introduced the new benefit, and presumably, contracted out the service. The lady was mad. I feel I calmed her down when I said “okay”. She then decided to tell me that when my claim is processed, I should expect for my Medically Trained People to be contacted and said I may be required to attend a physical assessment. It was good to know, because I had forgotten. We finished the conversation with me being told that there is no timescale by which my claim needs to be processed, when it is, I’ll be contacted by the post.

This is my first experience of the UK benefits system. I am very impressed by it.

I just know that when I finally receive the letter, the dog will have eaten it before I have a chance to read it.

EJB x

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