Tag Archives: Positivity

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

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Bring It On Please

I woke up this morning, after I had crashed in my bed the day before, knowing that I was ready. Something had shifted. I was ready to start my new treatment cycle, and as angry as I am, moping is not going to change things. So, I woke up ready to attack this motherfucker with drugs funded by your tax money, and I think I am ready its side effects.

Having read the guidance yesterday, I took my time depositing with the greatest of ease this morning because I know that that is going to become difficult again. Bloody shit. Linseed will also be making a return, that’s for sure. Once I was finished doing that, <em>twice</em>, I got dressed. Some would say that I was overdressed for a trip to Daycare, but I do not give a damn. It continues to be my armour. You know that there was a Mac Matte on my luscious lips. <em>Something about me has to remain luscious</em>. Dancing around the flat in my bra and skirt may have seemed overkill, but it made me feel like Sharon Stone and it just confirmed that I was <em>ready</em>.

The chrome coloured lining is that I have been through this before. I know the tricks of the trade and I will use them to make <em>this</em> easier. Upon arrival at the Macmillan Centre I took myself to the Lower Ground Floor where my favourite Blood Taking Man took my blood, because I had the foresight to pick up a blood form yesterday. I then went up a floor to check that my prescription was ready after being deposited yesterday. <em>It wasn’t.</em> I expected this, I have been through it all before, remember? So I smiled politely and said I would be back. I made my way up the Second Floor also known as Daycare, at 11:00hrs. The best time to receive drugs for you get a free lunch. I did not need to check in, I just said hello to my favourite iPhone Loving Receptionist and that was it. It was like the last three months had never happened. The Medically Trained People were saying hello, seeing how I was and I managed to be glued to my iPhone, iPad and iPod all at the same time. It was normal. A normal to which I have become accustomed since this all started six months ago. When I was called over, a mere ten minutes later, I made my way to my favourite red seat next to the power points and settled on down.

Now, I said to the Medically Trained People yesterday that I wanted to be in and out in an hour. It was actually 90 minutes, but I will let them off that because I asked for some extra drugs yesterday and I was surprised to find this waiting to be administered today. That meant a cannula, but I love the Zometa too much to complain. Cannula’s are not a regular occurrence with VTD.

So there I sat, in my favourite red chair getting the drugs and knowing the forms. I was all zeros today, which means no side effects. That will come. I had my blood pressure taken sitting and standing. They didn’t need to tell me, I knew that was coming too. If this is what I have to do once a week, then so be it. I am ready.

At Velcade Time, when the second nurse arrived, I excitingly declared “Emma Jane Jones. 24th of the 5th, 1984. In the stomach please.” And that was it. It was done. Well almost, my nurse, who had evidently never met me before insisted that I had a blue book to record my appointments. Like I said, she clearly had never met me before. As with PADIMAC, that book will last a week. I do not forget my appointments. I then picked up a blood form for next week and got the lift downstairs, where I collected my bag of goodies, which by this point in time was ready. ID at the ready because I was collecting a controlled substance.

Tonight I have to give myself an injection and take my thalidomide and that will be my Day One done. It’s like the first time all over again.

So I finish as I started. <em>Bring. It.On.</em> <strong>I am ready.</strong>

EJB x

P.S. If you want a laugh, try listening to me pronounce ‘thalidomide’. It’s impossible I tell you. Impossible.

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The Bad Day

Yesterday was a bad day. It was probably The Bad Day. The thing with myeloma, is that they’ll be more Bad Days. I realised that properly yesterday.

I like to think that I am stoic and I deal with My Myeloma as positively as I can. The sad truth is, that on a day like yesterday, even the strongest of strong bad asses are going to fold. I folded. I guess, as the cliche goes, it’s the getting up again that matters. I didn’t get up yesterday. I have since I started this journey become a firm believer in letting it out. And boy, did I let it out yesterday. There is no use pretending that I didn’t. I did. My emotions yesterday were real and they played out something like this:

Upon hearing my dreaded news, I believe my self preservation mode kicked in and all I could think of was to not cry in front of the doctor or nurse. Sure, that made it quite difficult to process what I was being told and you know… concentrate. I didn’t ask why my mouth and nose were swabbed, I didn’t ask how bad my increase was. Is it actually just a step away from donating my body to medical science? I didn’t ask. I just had to get out of the room and I didn’t want anybody to ask me how I was. I wanted to go home.

That did not happen though. I had to pee into a pot and make an appointment for next week. I got the peeing out the way, but making the appointment was near impossible. I did not have the energy to overcompensate my tears with a joke. I just whispered to the receptionist as she dilly dallied over her computer. Rather nicely, my transplant nurse waited for me to do this to check that I was okay. I wasn’t. She got the lift down with me and again, all I could think of was ‘don’t cry’ and ‘don’t ask me any questions’. She did though and I think from that point on, I could not help but enter the longest crying session I can ever remember experiencing.

Of course, I could not go home straight away. Life is not that simple. I had to pick up some drugs from the pharmacy. I was told that it would be 30 minutes. It wasn’t. It took over an hour and that was an hour of me sitting on the ground floor by the Garden Lift crying, hoping that nobody I knew saw me. Again, that did not happen either. It would be inappropriate to rank my doctors by preference, they are all Medically Trained People after all, but my least favourite doctor walked by twice as I sat there blowing my nose on the lining of my coat with mascara running down my face (FYI, I strongly suspect given the time between sightings, he was having a crafty fag, Medically Trained People should know better). My favourite Macmillan lady also saw me and with her I didn’t try to hide it. I just let it out. More tears and more snot. Consequentially, my counsellor called me later in the day to arrange an appointment. That’s where your charity money goes folks.

If waiting wasn’t bad enough, I had to tell The Support Network. I have a vague recollection of saying to a Medically Trained Person, I do not know who of course, ‘what am I going to tell people?’. Apart from Mamma Jones and Big Sister, this was done via the group text message. I am a coward. The responses were heinous, for each text I received in reply, I cried some more. It’s not just about me. It would appear that people do care and they do love me. It was too much to take. Yoda was told not to come to the hospital, because I think at that point, if I had seen somebody from my actual life, I would have had no option but to roll around on the floor and/or to destroy the biscuit display in Costa whilst spitting expletives that rhyme with ducking hunts. I needed to be alone and I needed to process.

On getting home, via taxi, because the thought of waiting any longer in that building for my transport made me want to rip out my intestines, I sobbed. Actually, I howled. I walked down to my kitchen, opened my plate cupboard and thought that smashing its contents was an awesome idea. I then remembered that I hate cleaning and as Middlesborough tells me every time she comes to the flat, I do not have enough plates in the first place. So, I vetoed the smashing and instead, made my way to my bed and cried some more and reached for the tissues.

I tried to stop looking at my phone. I am probably still not answering enough of my calls because yesterday I did not know what to say and today, I want to forget about it. My favourite comment yesterday, which I received from several quarters was ‘it is fucking shit’. ‘Sorry’ worked to some extend, but I wanted venom. Only venom was going to stop the tears yesterday.

After a few hours more of crying, I moved on to the paranoia. Why was everybody being so nice to me? Why were there so many sympathetic faces? Why did they say ‘if’ I have my transplant? Why did the doctor think it was a good idea for a family member to come next week? The questions went on and on and on, and yesterday, the only answer I could come up with, was ‘because I am going to die’. And then I cried some more.

And then, I thought I better keep my evening plans because the alternative was to carry on crying alone on my bed and I did not have enough Kleenex. So, I went out and what do you know? I cried some more and had to wipe my nose on yet another coat (black cape if you are interested).

Getting to sleep yesterday however, was surprisingly easy. I was exhausted. The shock had taken most my energy away from me and then the tears took what was left.

Not everyday is a barrel of laughs in Myelomaville. I felt loved and alone all at the same time. I also just wanted the day to end.

As for today? I got out of bed.

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EJB x

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Pride

I am constantly asking myself whether I conduct myself in a manner in which I can be proud of. It’s a question I asked myself before I had myeloma, but I have experienced, with myeloma, there are many more occasions where there is the possibility of me acting like a big old twit.

On the whole, I think I have handled My Myeloma pretty well and I hope that I will continue to do so. Though, in a world where everything is exaggerated, so too are my actions and this gives me reason to think. Every time I have an uncontrollable crying session, like yesterday when I was told that my treatment may be delayed, I am ashamed. I’m ashamed that I could not be stronger and hide my fears, weakness and disappointment. I am not proud when I argue with my friends. I could always handle a situation better, but it’s a struggle when my mind is all over the place. I can find no pride in the times I have lost my temper with the daycare nurses for delays with my treatment, accept at NHNN, they deserved my wrath.

The thing is, if I want things to be normal and my life to continue, I’m going to make mistakes and questionable decisions. I am going to upset people and I am going to upset myself. Although I would like it to, cancer does not make me invisible. Even superheroes are flawed. I know this because I have seen the movies.

That said, there are many daily things that I do find pride in. During PADIMAC, any poo was worthy of a photo. On Saturday, I used the Hoover. And today? Well, thus far, I am so proud of myself that I was able to produce more than three litres of piss in the last 24 hours. I filled a bottle.

My self worth ain’t going anywhere. Hear that Fake Menopause?

EJB x

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Game Face

Every three weeks, for my Doctor’s appointment, I have to pull this little baby out the bag… My Game Face.

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It oozes positivity and confidence, sure.

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Manageable Chunks

Since my diagnosis, I have very much been a fan of managing My Myeloma in chunks, or sections if you will. I quickly realised it was the only way to protect my brain and thus my person, and I guess others, from a mental breakdown. I’ve allowed myself to think about the future, but only briefly, for thoughts are swiftly pushed out for me to focus on the now (or then). I have lived within each three week cycle and each cycle only. This got me through PADIMAC. The future was for me to manage in the future.

I now find myself in my future.

I have known since October that I would require a stem cell transplant at some point and when that point arrived, I would need to make a decision about whether I had my own stem cell or Big Sister’s. If it was scary before, it is terrifying now. As scary as the transplant seems, it is the decision before that which is plaguing my thoughts and my dreams. The decision is not months away and something that can be put to the back of my mind anymore. The decision is imminent and I have to decide whether to bring my volatile best player out at the start of the match, or wait for extra time.* It’s length of remission versus possible death, without any certainty of either.

Decisions, decisions, decisions…

I am yet to consult properly with my doctors about this, that is on Wednesday. Fun.

Manageable chunks seemed to make so much sense before, but I do not have a screaming whatsit what I am going to do now.

It is all I can think about.

This sorry tale will most definitely be continued…

EJB x

* A Twin gave me that metaphor. I like how it only partially works.

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A Christmas Reality

Today is done. Today, is Christmas Day of course, or the 25 December 2012. As I expected, despite trying, today has been bittersweet. My body played ball for approximately four hours this morning, before I crashed and burned, cried, opened my presents and cried again, snoozed, watched a film and ate.

Tears today were inevitable, but how poorly I felt at approximately 14:00hrs today was not. So, being the brave lass I am, I cried. I cried because I wanted to feel better so I could open my presents with energy. Alas, I did not have energy. Stupid Myeloma. If I am perfectly honest, I cried because I have myeloma. There was no escaping it today. Stupid Myeloma.

πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…

Why couldn’t Santa Claus make it go away?

πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…

At least I was spoilt and got lots of other presents. It is clear from my gifts that at the tender age of 28, I am over the hill. Today, I got a slow cooker, a cook book, smellies, knives and a period drama. I loved them all. Next stop? A sewing machine. For sure.

I would also list how much I have eaten today, but I am not Bridget Jones. Not yet.

Night night,

EJB x

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A Christmas Message

It’s Christmas Day. I made it to Christmas Day. I am awake and ready to spend the day with my family. In. Your. Face. Myeloma. You could not take it away from me.

I had considered doing a video message for you all, but seeing as it is Christmas and you are all likely to get lots of gifts already today, I thought the gift of seeing the laughter behind my eyes too much. One can have too much of a good thing. I will save that treat for a rainy day in January when today is but a memory, and the fact I have a lifelong cancer won’t matter so much.

The last five days have been tough. Real tough. Tougher than my previous cycles and the fault for that belongs to Christmas. I have and will continue to try my hardest to pretend that this is just a normal Christmas, but it’s not. Everybody knows it is not. I have cancer. My Myeloma is not the elephant in the room, because I am confronting it at every moment of the day. As I lay in bed, hoping for my Christmas wish to come true, every time I closed my eyes or it was silent, the words ‘cancer, myeloma and death’ would appear in my head. That really is not the spirit of Christmas, at least not the one Hollywood has taught me. I know though that there are only so many tears I want to spend thinking about it, because it is indeed Christmas and I do want to enjoy myself and spread the Christmas cheer. Take today’s outfit for example, I look like a postmodern Christmas tree and that my friends is on purpose.

I want to tell you all the things I have learnt this year; and advise those not as blessed as me, how to live their lives better, much like the Queen will at 15:00hrs today. Unfortunately, I do not think that Santa brought me enough words for that and this blog is time bound. Thus, because it is Christmas Day, I will warm your heartstrings and in the words of Ebenezer Scrooge, say “it’s true wherever you find love it feels like Christmas, it feels like Christmas, it feels like Christmas, it feels like Christmas” goddammit.

Now, us Jones and James Cottam Flooring are going to try and have a good time. We have two Christmas trees… which says it all. We are the bomb.

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Merry Christmas to one and all, and to my friends and family, I love you long time.

EJB x

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The Good Cylinder

Remember the Good Cylinder…

Remember the Good Cylinder…

Remember the Good Cylinder…

Remember the Good Cylinder…

For this will just not do…

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I would not wish this upon a mouldy cabbage, or something as equally heinous. Sprouts.

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And So It Starts…

… Twelve hours early. Hooray.

I have my good cylinder reserve. I have easy to heat food in the freezer. My bed is made. The flat is clean. EMan is ready. I have ITV mystery dramas. I have helpers at the ready. Just turn off Regina Specktor, it’s not for now.

Let the sleeping commence, as soon as today’s drugs have been administered. Embrace the mental blankness. It’s how the people feel after a session on the source. Or so I recall.

Be strong Jones. It’s making you better. Really.

The paraprotein better go down in 15 days. That’s all I am saying.

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