Monthly Archives: December 2013

The Creature of Habit

I am a creature of habit. Things need to be just so. I do not like change. I sleep on the same side if the bed, I prefer a side of the bus and I always sit to the lefthand side of NFT1 at the BFI. I like things the way they are, and that is that. My treatment on the Second Floor is no exception to this. I have a side of the room, I have rituals that I adhere to, and when that changes, well, I do not manage it very well. I think I can evidence this….

I am sulking. Big time. For the Second Floor has failed to meet my usual, completely realistic, expectations.

First of all, I was greeted by a receptionist who did not know me. What? I hear you say. Not know me? She won’t last long. And none of the nurses are smiling, even when I red lipstick smile at them.

As the lift doors opened, I looked forward and saw that the clinic is rammed. Utterly full of sick people and their healthy buddies. My heart sank. There are people everywhere; it’s like there is a sale on and everybody is buying. It gets worse, I sadly discovered on my arrival that there are NO big read comfy seats free. Not only that, there are no free moderately less comfortably grey reclining chairs. To take this trip even further into the rubbish dump, there are no free hard red chairs with a tall back. I am sitting on something that I did not even know was a seat. Essentially, I am sitting on a cushioned park bench in shades of grey and orange. I am in dire straits. Actually, it is not just me, I just witnessed the Medically Trained People wheel a patient into a bay on office chair. Oh my gods, it’s all the fault of immigration to be sure.

Now, I must, begrudgingly give people their dues, I have surveyed the floor and the people preventing me from being comfortable who are occupying the the big red chairs and the grey recliners are patients. The people occupying the premium economy seats, with neck support, are not patients. They are with patients. I do mean to sound like a child when I say that they are selfish numskulls. Sure it’s New Year’s Eve and people are off work, so they have chosen to spend their free time with a loved one who is being injected with poison, but this does not make it acceptable for them to make me feel uncomfortable by them occupying my preferred seats I have back issues. Nor is it acceptable for them to watch me struggle with a chair whilst they sit their and sip their coffees, and accumulate rubbish which they seem to be incapable of putting in one of the several bins provided. I just know they have used the patient toilets. They are also making a lot of noise, thus drowning out my iPod, foul excuses of human beings. I’m am sure they are all talking utter tripe that is about as interesting as watching beige paint dry, but that does not mean that they can use up all the tables and make me put my tea on the floor.

Sod sulking, I’m irate. This is my space and this is my time and I am surrounded by badly dressed, ageist imbeciles.

Damn you, sick people. Damn you.

Smiley face.

EJB x

Tagged , , , , , ,

Acclimatisation

The month long hedonistic experience that is December is coming to an end. I used to love December. I loved the lead up to Christmas where at work you get to feel like you are breaking up for the holidays, and at night, if you were me or if you of my kind, you party, or at least go out, and you do that until you can go back to your Mum’s house and sleep. Last year, I could not do any of the pre Christmas fun I loved so much, instead, I got to go to the hospital and see the internal walls of my flat, until I was chauffeur driven to Mamma Jones’s house to sleep off the steroid crash. This year, my Christmas celebration coincided with my return to normality. It coincided with me being told that I was in remission, and thus, everything became all the more special. I had a drive to make things special. It was a 100 miles per hour down the motorway sort of drive, that saw me wanting to accelerate my recovery and enjoy a December like it was 2011. Of course, life is not that simple. Recovery does not work that way.

Christmas exaggerated my return to normality. In case you wondering, my return to normal, included returning to work, seeing as many friends as physically and financially possible, whilst telling myself that I was able to fit in my ongoing treatment, and more importantly, my ongoing need to rest. Throw Christmas into the mix, with my natural desire to see me loved ones, and embrace London life, and what you get is a disaster in waiting.

Even though I dared not believe it, and even though I have a reasonably firm head on my lesioned shoulders, I was naive in what I thought a myeloma remission meant, and what it means. I may have spent my post transplant world trying to get my head around what my life means now, but even with all that time, and all that thought, I dramatically underestimated just how difficult being in remission is. I am not alone in my naivety, for I am fairly certain that every member of my Support Network also suffered from the same ailment. Dare I say it, they may have caught the jubilant bug, more than I did and admitting that we were wrong, was not something I welcomed.

On a practical level, if I view myself as an object, a thing that does not come with emotions and a fear of an early grave, I know what needs to be done in order to acclimatise to the real world, the world that I can inhabit in My Myeloma body. I need, for example, to factor in at least 30 hours of extra down time a week than the normal 29 year old lady, at least at the moment. I need to not drink like a rugby player, that one is forever. I need to not put pressure on myself to match my former self. The reality does not look like that. December certainly did not look like that. I am full of emotions and I do fear an early grave, and all that sense and planning went out the window. I did not ease myself back into my world, I threw myself in and then some, to find that the world I thought was there, does not exist anymore.

There is so much to celebrate with remission. For me, my remission offers me some freedom to just be. I means a world free of constant medication. More importantly, a myeloma remission means more time. I imagined my remission to be a form of utopia, where I could just live each day as it came, and not dwell on what is going to come in my future. Maybe this will come, but if December taught me anything, it taught me that I am not there yet. Every day, I have to learn something new and cope with the trappings of my body. It is not easy. My remission does not offer total freedom. In returning to my life, I have found that there is less to celebrate than I imagined for all those months I was stuck in my bed, longing for this time to come. My day to day life now, is not a series of celebrations, I have said it before, my day to day life is a series of concessions and adaptations. As I have tried to live my life to the full, what I actually experienced was, that in living my day to day life, I got to experience for real, just how much I have lost with myeloma. Of course I have seen people whilst I have been sick, but until now, I never appreciated that although they were there with me, their lives did not stop for 16 months, their lives did not stall. Now, 16 months on, I see people who are settling down, getting married, having babies, partnering up, buying houses, shacking up, and I am not. It did not feel like that in. July 2012. I felt like an equal. I now feel like I am backwards and I am never going to truly get the chance to catch up. Myeloma did that.

Living a normal life is so hard. Correction, in December, I pretended like I could live a normal life, because that is what I felt like everybody around me was willing, and in that I include myself. I think I have a fairly good ‘can do’ attitude, where I just get on with it, but I cannot do it without stopping to mourn the life I could of had and I see others having around me. I have to acknowledge that it is hard and you do too. Treating me like the last 16 months did not happen, does not make it go away. It does not remove my pain and it does not heal the invisible wounds I fight with every time I get out of bed. In order for me to execute a normal day, I have to plan and I have to think more about every action in order to achieve it. I do not just get a bus for example. I have to think about how and when I am going to get a bus and where I am going to sit on that bus, and wherever my destination is on said bus, I have to think about how I am going to function on the other end and pray that I am going to be able to get back at the end of it all. I have to do this because I do not much like the alternative of staying in bed.

I am a simple person. I know how to live when I am in treatment and I know how to live like I do not have myeloma. I do not yet know how to face the big wide world with myeloma and without treatment. People tell me that I have to take it easy, and that I have to rest, but for me it is not that straightforward. I do not know how not to burn the candle on both ends when I am allowed to leave the compound. I learnt in December that I can no longer burn the candle. The lesson came with exhaustion, a missed Velcade injection, lots of white phlegm and antibiotics. That was then proceeded by a week of sleep. I say a week, it’s been a week and I am still sleepy.

The word ‘remission’ is not a magic switch. It does not make everything revert back to the way it was and there is no good to be found pretending that it is. My Big Sister told me that I had to snap out of my negativity and just get on with life, with living. The problem is, I think I like living too much. I want to enjoy everything I have missed, but only fools rush in, and I cannot be a fool. Just as I learnt how to deal with my various treatments I have to deal with this, for however long I have before I am in treatment again. My new world does not include going out every night, but I do not want it to involve not going out at all. For me, that is difficult. It may be a first world problem, but it one that I feel most acutely, so much so in fact, that it makes my forehead hurt, and last week, my stoic facade dropped, and for the first time in a long time, I openly admitted that this is hard. All, so, very, hard. It was not pretty. I think the drunken solitary howling at 02:00hrs in the morning may have been the highlight. I called it a myeloma breakdown. Oh well, like faeces, better out than in, I suppose.

EJB x

Tagged , , , , , , , , ,

A Christmas Message

Ho Ho Ho. Can I get an echo? Yes I can, Ho Ho Ho. Merry Christmas.

Today is Christmas Day. Today is my second Christmas Day with My Myeloma, and although I am still sitting in the dark, in my clammy, night sweat riddled pyjamas, with a sore throat, a blocked nose, maybe moderately depressed, having had a broken night’s sleep, I can say hands down, that I feel much better than I did 365 days ago. I will need to nap later, and the reason for that is a whole other blog, but I do not anticipate any steroid crashing today, one needs to be on steroids for that, and so, I know that this year will be better. I just reread my blogs from last year, and I know it will be better. That said, myeloma still has the ability to make Christmas feel important. It is important for everybody of course, but in my strange, abnormally large head, myeloma brings pressure at Christmas. Pressure and bad thoughts.

For me, like the birthday now, Christmas Day, is a countdown in reverse, always accompanied with the thought of ‘how many of these do I have left? It’s my second now, so if the stats are right, I get eight more, right?’ I try not to believe that of course. I do not think I have ever done anything really wrong to warrant the naughty list, and Santa Claus is not a cruel man. The stats are wrong. At least, that is what I tell myself to get through the day. Nobody wants Christmas to be a myeloma downer. Myeloma has taken away enough already. Christmas should be FUN. MEGA FUN. Myeloma does take away some of my pre-Christmas fun, because in the back of my head, in addition to feeling the presence of the grim reaper, I know that something could go wrong with my body, this ruining Christmas for everybody on this universe, so I have spent much of the last month begging my body to get me to the 25th December without any glitches. I managed to get today with antibiotics, but that is better than the alternatives my mind can create. It is also better than the alternatives that happen to people with myeloma all over this fair land. Christmas is for loved ones and hospital love is not quite the same as family love is it?

And so, because I have a lot to be thankful for on this Christmas + 2, what with being well and in remission and all, I am going to attempt to not think about myeloma again today. It has had its time in my head today. After all, what is the point of worrying about what is going to happen to tomorrow, today, especially when today is the day after the night before when Santa Claus came down the chimney. I am going the rest of the day thinking about my family, the immediate mostly, all the Telfer’s or whatever they are called now in the North, the Jones’s in the South, my friends all over the place, my presents and my gut. That sounds like a good day.

Christmas is about the good sort of sentimentality, not the bad sort.

Must dash now, I have children waiting. So, without further adieu, I wish you all a very merry and healthy Christmas.

Much love and all that jazz,
EJBx

Tagged , , , , , , ,

27 Minutes, Minus 2

OMGeezus!

My trip to UCLH a fortnight ago was not a miracle, an exception to the rule, something stranger than fiction. Today, two whole weeks on, I was in, bled, injected and out in 25 minutes, well in would have been 25 minutes if I had not faffed around with wanting to speak to my CNS, to curb a serious bout of paranoia.

I cannot handle this change. 25 minutes does not afford me time to win over the people sitting next to me with my wit, it does not give me time to eavesdrop on the Medically Trained People’s conversations and it certainly does not allow me sufficient time to appreciate the new Doctor’s broad shoulders. It’s not even enough time to drink a cup of tea.

Change is difficult. Change is tough. Change does have to be managed. That is why, 40 minutes later, I am still in the building, finishing my cup of tea, looking at people walking by and fabricating conversations with the people next to me. Plus, in the Support section, they are playing some banging Christmas tunes. Bonus.

EJB x

Tagged , , , , ,

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

Tagged , , , , , , , , ,

Rite of Passage

Few people, unless they have been in the position where they have had to take strong drugs, will truly understand how said drugs can disrupt your body. Even when you think you have been there and got the t-shirt factory, it can still take you by surprise. Despite the fact they are designed to make you feel better, in the short term, they make you feel quite the opposite. They make you tired, they make hungry, they make you lose your appetite, they make you sick, they weaken your heart and so on and so forth, until we get to their secondary role as a butt plug.

Currently, I am trying to learn and understand what the fortnightly payoff is for having a poison injected into my stomach. There is always a payoff and a debt for goodness, and I’m adjusting to that once more. I know what the velcade side effects look like when they are accompanied by other hard drugs, but I do not know what it looks like all on its lonesome and this has me ready to pounce on any change in or on my body.

My post transplant world, fraught with its own issues and darkness, is the longest I have gone without hard drugs, since all this started. The beauty of this little factoid, is that it enabled my body and my system, should we say, a chance to regulate, a chance to acclimatise. Just as I have had to get used to living with this, so too has my body. The problem however, as I am discovering as I type, is that everything and anything that is not the norm, wreaks sheer havoc on my insides. I am mainly talking about drugs here, but it also applies to bacteria. I think an episode last week involving some past its sell by date bean curd made Housemate never want to sleep with his door slightly ajar again… On the other end of the scale, when I was forced to take Oramorph, I made the deal with the devil, which allowed me to sleep, but stopped be from doing something rather special, for a whole week.

At the moment, I know that my limbs are more prone to numbness than they should be. I have had my phone resting in my right hand for a good 15 minutes now and the sensation in my right hand particularly, is not a pleasant one. With my two injections to date, I have been kept up once with the desire to chop my left arm off, as I was aware of its presence and only it’s presence. The neuropathy is the easiest thing to measure. It’s the same as it has always been, and velcade has always been its cause.

More difficult to measure is the fatigue. Fatigue is our plague. I am tired pretty much all of the time, so it is difficult to separate the causes. After each injection I ask myself and others whether I am tired because I am just tired, or am I tired because I have just had bleach injected into my stomach? It’s too soon to be able to answer that question. Not that it stops me from hypothesising.

Of one thing I am certain. I had my last injection 9 days ago and since then, I have managed to empty my bowels two and a half times. The same thing happened a fortnight before. Another deal with the devil, eh?

On the above, I can whinge and I can moan, and I do whinge and moan, but I also need to just get on with it. It is a payoff; maintain a remission for little discomfort here and there.

The truth is, I know it could be so much worse, so it just has to be dealt with. It’s part of growing up.

EJB x

Tagged , , , , , , , , ,

Lazy Sunday Afternoon

A Sunday is a day of rest. Or a Sunday is a day when one can pretend to broaden their cultural mind. If the gods are feeling kind, a Sunday should also be a day free of the hangover. I was able to experience such a Sunday on Sunday, well, apart from the MRI scan smack bang in the middle of it all. Apparently UCLH is open for non-urgent scans on a Sunday. I got the impression the staff wanted to be there as much as I did.

Prior to Sunday, I had had two MRI scans in My Myeloma life. The first scan, in the happy days of August 2012, remains, without a doubt the most painful hour of my life. My spine does not like metal slabs, in case you were wondering what to get me for Christmas. The second scan, understandably was met with irrational fear of me unable to sit up at the end of it. I do not need to be reminded of my fear, because it permanently squats in my head, but if you want to be reminded of it, go for it (https://ejbones.wordpress.com/2013/01/13/oramorph/). After all the thought and panic, that scan turned out to be fine, if I recall, I was elated after because I could do it and I became another. I could lie flat again!Going in to Sunday, I assumed my experience would be as it was before. I just assumed the wrong before.

In the last few days, I have been asked to explain why the expensive machine me feel like I was being tortured in a Tiger Tiger, and the the answer is simple; because I was lying down flat in a white metal tube half scored by poor sound quality modern ‘dance’ music and mania. I was not exactly flat, I was on a metal slab, with my arms crossed on my chest whilst my legs were raised on a foam cushion with my feet left dangling, with my neck was clamped down in a collar attached to said slab. In that position I stayed for 45 minutes, perfectly still, apart from some involuntary movement. I looked like The Monster and not The Bride. After ten minutes, I wanted to escape, but it was your tax money paying for the scan, so I persisted. The pain permeating from my lower spine, was worsened by my neuropathy. Here is a tip; velcade plus unsupported feet plus stillness does an excruciating dead right had side of your body make. Unfortunately, I was shoved into the big old tube with headphones on before I could tell the radiographers that I, being the special person I am, would need my feet supported.

My pain was such that I had no sense of time. It was such that I had to be assisted up at the end of it, and I really hate that . The pain was such that a dulled version of it remains. Hell, I even had to postpone a cinema outing because I would not have been able to sit still. Given the evidence to hand, it is probably wise for me to have had the scan. Let us hope that it only reveals lesions.

I find the fact that I can and do experience such levels of pain, that I am reduced to tears, embarrassing. I also find it shameful. Every time it happens, I blame myself for it. I blame my body and I get angry. I am hard. I have a high pain threshold. I should be able to deal with it, especially by now, it’s that simple. I’m sick of being a broken record. Now, my counsellor said I do manage it, but my irrational side sees any pain, as a defeat.

Back to Sunday, however. To make the experience even worse, prior to the big metal tube, as I slowly stripped in Cubicle 6, I realised two things. First, I was wearing tiny knickers. Secondly, I had forgotten to do something that if I was a lady who was unexpectedly getting on with a handsome man, one would be in dire straits. I discovered that those legs, my legs, were quite hairy. Visibly hairy. As it dawned on me that I was braless, prickly, still wearing my socks in a hospital gown I could not do up properly, wearing a tiny knicker, I felt self conscious. I am not at my physical peak, by a long shot, so I panicked. So, what do you imagine I did? I took a selfie. A selfie in a hospital gown.

20131203-094740.jpg
Enjoy.

And then, I walked into the corridor and exposed my buttocks.

I suppose that is a nicer story to remember than the pain.

In case you are wondering, today I am wearing a big knicker. Two pairs. Nobody is going to see them.

EJB x

Tagged , , , , , , , , ,
%d bloggers like this: