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Yes/No

In my journey thus far, my brain has always been more willing than my body is able. This usually means that I say ‘yes’ to a myriad of things and then panic, sweat and have a sleepless night when it becomes apparent that I am going to fail. That’s really how things have worked everyday for the last 19 months.

The key point here, I guess, that I would like to highlight with lines made by a ruler and a red pen, is that I am almost always willing and more often than not, I do try to do what has been asked of me. Occasionally, I even succeed. A lot of the time, I fail. That’s really how things have worked everyday for the last 19 months.

Fortunately, my days at the moment are met with more success than failure. Providing I am sensible, I can achieve what I set out to achieve on any given day. The success is dependent on a number of factors including me having had to learn the power and advantages of saying ‘no’. I find saying ‘no’ very hard indeed, but in doing so, I am able to achieve much more than I have achieved in a very long time and that is not how it has been everyday for the last 19 months.

Learning to say ‘no’, or allowing myself to, as bittersweet as it is, is allows me to improve. There have four occasions in this last week, where every part of me has wanted to either go out or stay out, but some being separate to me has appeared in my brain and forced me home. If I am perfectly honest, most of the time when I am
in this predicament, I imagine what Housemate would say to me in the particular scenario and then act accordingly. It’s a tremendous amount of power to have to be sure. On Tuesday, the pain of leaving my party at 22:00hrs in a public house, to go to bed, was great. Big Sister had to validate my decision on the return to my room, because I saw it as a symbol of my losses. On Thursday, my decision to be in by bed by 23:00hrs also had to be validated. In my pre-myeloma life, I would have been aware of my need to rest, but I never acted upon it. Now, if I face any chance of living a normal life, I have to act upon it, and act upon it I do, multiple times a day.

It saddens me. Restricting myself, censoring myself if you will, saddens me. My Myeloma did that. But, if I did not do these things, I would not be able to tell you the next part of my tale….

And now, I boast.

A fortnight ago, before I got angry at the Velcade fatigue, I worked a 31 hour week and had an almost full day at the hospital. That my friends is called progress. I barely noticed my working hours that week, but I suspect that is because I had said ‘no’ enough times that I spent my evenings on my bed with the dog. Last week was met with a similar output, minus the weekend of Velcade fatigue, which was greatly appreciated. I worked for 33 hours this week with a day of annual leave. Boom. On Tuesday, I was awake for 17 whole hours and outside of a bed for 15 of those hours. Sure, I slept for 11.5 hours the night after, but that is still progress. Progress that can be backed up with actual evidence. Evidence by the way, that we would not have, if I had not also rediscovered by memory.

I am slowly trying to celebrate these successes. The pride I have in being able to work 31 hours a week, has been evident all week long and that has surprised me, because I think I have told everybody I have come into contact with that this is the case. I might have even told people who do not know me that this is the case. To those people, I am probably just lazy. The people who know me and have listened, congratulate me. Rarely do I go into the details of what this achievement means I cannot do, but that, I hope by now, is evident. In three weeks time, I hope to be able to work a 37 hour week, whilst continuing with my current treatment.

The right balance of the yes and no, continues to evolve and I have no idea what the ‘right’ balance will actually look like. It doesn’t look like what I am doing now that’s for certain, despite my boastful successes above. It cannot look like what I have now, because I am yet to factor in my pain management as well as my fatigue management. No doubt, a few more no’s, a little less spontaneity, a bucket load of tears and a haemorrhoid cushion will have to surface before we reach that level of paradise.

EJB x

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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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Balancing

As I continue with my quest to ‘have fun’ during this limbo, I continue to learn about what My Myeloma has done to me. In the last five days, I have learnt that I am no longer a fan of sitting. I like a chair as much of the next person, but my body is in such a state that for anything longer than two hours, I now need a chair that is accompanied by a footstool. Let’s face it, I really need my bed.

Since Saturday, I have walked further than I usually walk and I have sat in an elegant position for longer than I usually do elegance. It has been fun. I have been entertained, I have spent money, I have seen my friends and I have been distracted from My Myeloma. Unfortunately, while my mind is willing, my body would rather be in an inelegant position, extenuated if I am wearing a dress, on my bed. I’m talking knickers here, big black ones. Thongs would not be fair to Housemate.

Whilst I am enjoying the freedom from my treatment, I am trapped by my body. Everywhere I have been in the last five days, I have felt my neck, back, hips, ribs or butt. The pain is worse than it has been in a long time, and common sense would suggest that this is because I have been doing more with my body. Sometimes though, I do not listen to common sense, and every increase in pain is not a form of retribution, but is my bones worsening. At my most paranoid, every click of my neck is just one step closer to paralysis. I went to the cinema today, and while the film offered some snippets of escapism, my internal narrator spent much of the 127 minutes saying “neck, neck, neck, neck, neck, neck” and then He said it some more. Obviously, I will mention this to my doctors, but I know what they will say. Common sense will prevail. Oh yes it will.

It’s difficult. On the one hand, I love being a dirty stop out, because I have left the flat for more than eight hours in a day for something that is not based in the Macmillan Centre. On the other, I love the comfort my bed offers to my bottom and my back.

Life would be divine, if I did not have to make the choice. Lonely comfort or entertained pain.

I know there is a balance, I just do not know what it looks like yet.

It’ll come. It has to.

EJB x

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