Monthly Archives: April 2014

Trace

45, 36, 26, 29, 24, 23, 21, 20, 19, 18, 26, 21, 21, 20, 19, 8, 7, 5…

Since the 15 August 2012, when a junior Medically Trained Person told me I had an inaudible rare sort of paraprotein in blood, I have been plagued by it’s volume. For the first 12 months, it ruled my life and the monthly test result would determine my mood and resolve for the rest of the month. I lived and breathed that paraprotein level because so much of my life depended on it.

“We must get a partial response of 50% reduction.”

“It has to be below 20.”

“A complete response is 0, and it is unlikely you will get that on PADIMAC.”

“We think it has plateaued.”

“It’s 18, you can go to transplant.”

“I am afraid your paraprotein has increased and you will not be having your transplant. You will have another four months of treatment and then we will see”

“You are unlikely to have a level below 10 after your transplant.”

And so it went… I monitored it and everybody monitored it with me, using a plethora of emojis when it was good news and kisses when it was bad.

To preserve my stoicism, after so many dashed hopes, at some point last year, I told myself that I did not care what it was because I was tired of feeling like I was getting my A Level results every month. In the autumn, for the first time, my paraprotein level reached single figures and then I realised that I did care. The ability to live my life revolves around a figure I have no control over Once upon an infancy, I thought that reaching single figures would be easy, a piece of piss if you will, but for me, it quickly became evident that it would not be a piece of piss. It became out of my reach and the thought of not having a paraprotein level was not even a dream. It was a disappointment.

In recent months, I avoided asking what my paraprotein level was because I did not want to know that the life myeloma has carved out for me was over before I could take off the training wheels. I chose ignorance. Ignorance however, in case you wanted to try it, does come with an unhealthy amount of paranoia and self doubt; and that is how I have lived.

I had a doctor’s appointment recently. It was one of those situations where I had worked myself into silent hysterics prior, mostly because I was informed three days before it that I had to come in for an appointment and then as I waited, I saw The Senior Medically Trained Person and my palms started to sweat. At that moment, all I could think about was my paraprotein level. It had increased to be sure and I would be back to the drawing board.

That is not what happened.

In a matter of fact way, I was told that my current treatment was working because my bloods looked “very good”. Very good, I thought, I must be maintaining my status quo, and I satisfied with that despite struggling through my velcade injections every fortnight. Velcade and all it entails is the payoff. That said, a general comment was not sufficient for me, and seeing as I had made the effort to be half an hour late for my appointment, I used the opportunity to ask what my paraprotein level was and what do you know? I did not have one.

It did not and does not feel how I imagined it would. There are no fireworks in my head. Everyday continues to be an indescribable struggle full of sacrifices and walls, which yesterday’s day in bed would attest to. The overriding feeling I have and this latest development is relief, I feel like it buys me more time. More time to get used to the life myeloma has carved out for me.

Naturally, the Support Network were more enthusiastic about it than I. Emojis and kisses. They do not see that it changes nothing in terms of my daily routine, treatment and ability to see them. My favourite celebration was a fist bump accompanied by the acknowledgement that everyday will still be difficult.

That said, I did let myself smile. A few times.

πŸŽ‰πŸŽŠπŸŽ‰πŸŽˆπŸŽπŸŽ‰πŸŽŠπŸŽ†
xxxxxxxxxxxxxxxxxxxx

EJB x

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The Inconsiderate Old So and So

The hour is 03:31hrs and I think you need to be aware that at this moment in time, I am highly aware of my hands and my feet. My feet, my hands with their ten fingers, when not buzzing are stinging. Let us throw my left arm into the mix for added discomfort. The effect of which, does not create a snug bug in a rug scenario.

As I am sure you can deduce, I am finding this development to be most inconvenient. For such awareness of appendages, opens the door to thoughts that normally are only permitted one minute of attention per day, before being shut away until the next day, and so on and so forth unless I am feeling ‘hormonal’.

Hands and feet. I have hands and I have feet. There is a thin layer of fibreglass on them.

As parts of my body continue to prickle, it begs the question of why I am aware of them today, when I was not aware of them at all 28 days ago. As one lies in the darkness of night, I can confirm that pondering the possible consequences of me being able to tell you that I have hands and feet, does not directly lead to REM.

Ten fat, marginally hairy fingers. Ten fat, marginally hairy fingers.

Then one remembers a conversation they had whilst receiving the root cause tonight’s unwelcome guest, around someone special’s forthcoming birthday. A birthday, which happens to be a milestone. Then what happens here is a dark trip into Maudlin Town, because a birthday to me is not simply a sign of getting older, it is a big, flashing neon sign that says I have a higher rate of mortality than you. To me, celebrating it is like taking photographs at a funeral; inappropriate.

Fire. Fire. My arches are on fire.

So then, the options for commemorating my birth become more entangled in my brain. Not celebrating it would be depressing. Celebrating it may also be depressing, but then, it may not be. Though what if there is nobody to celebrate it with me, My Myeloma does appear to have diminished the number of people I can turn to for a hug.

Bad vibrations. Bad vibrations.

The thought about one occasion then expands into the wider life losses I have experienced because of my illness. It expands into every life loss I have experienced because of My Myeloma.

Punishment for not being sinistral, that is what this is. Attention seeking.

Then the frustration creeps in. Frustration at being misunderstood; at having no control of my life losses and having to explain the impact of such losses over and over again for it to continue to be misunderstood or bypassed; which in turn only serves to make me feel more and more isolated and alone.

And then before you know it, I am here absolutely hating myeloma and everything it stands for. It is, after all, most inconsiderate. I am resuming some sort of life now and I do not have the time for this sort of nonsense. I am on the 07:35hrs train to Wakefield for goodness sake.

And then it goes round and round and round and round.

Anyway, I must put my phone down now. I have lost all feeling in my thumbs.

πŸ’€πŸ’€πŸ’€πŸ’€πŸ’€πŸ’€πŸ’€πŸ’€

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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Special

I have always known that I am one to stand out from the crowd, if said crowd were located on a catwalk. I have always known that I am special, even when I pretend I am
not and that was true long before I had myeloma. I am clearly always looking for evidence to prove that I am both right and special, in case somebody was ever to call me into question. Such evidence also feeds both my confidence and my ego, so I am eager to discover it no matter how tenuous the link.

So imagine my delight on Tuesday when I looked at the treatment board to find that I was special and I was standing out from the crowd. I was so happy about it, I took a photo.

.

20140403-101316.jpg
Proof

Of course, one could say that the reason my name was singled out was nothing to do with me being special. They might simply say that I was the last person to be treated by that section in Daycare on Tuesday afternoon. If they were being accurate, they would say that I was not the last person booked in on Tuesday. I had the last time slot of the day, but that does not mean that I was the only one to arrive at 15:00hrs. I probably was not the only person to wait 75 minutes to be seen by anybody either; it was very busy after all and that meant I had to sit in the greenhouse on an uncomfortable chair again (seriously guests of patients, give up your seat to patients, it is not hard). I was however, the only person on Tuesday afternoon not to have had their Velcade waiting for them . Not only was my medicine not ready for me, it had not been made. The discovery at 16:20hrs, meant that I had to wait for another hour whilst the pharmacy worked their magic. It was an unfortunate fact, especially as my attendance had been confirmed just 24 hours earlier. I did remain remarkably philosophical about the three hour treatment time and I used said time productively, for which I am sure my employers are most grateful. Back to my first point, as I am not the only person to have been delayed in this way, you could argue then, that I was not and am not special.

It’s a tough call. >

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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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