Monthly Archives: November 2013

The Return to Work

Today marks my six day of work post transplant. I say day, what I really mean is that today, I will do three hours of work, alongside the six hours I have already done this week and still have six hours to go. I am taking this slowly.

It has to be slow. I am trying to restore a masterpiece.

My body decided that I could not do any work before now. I tried. I took my blackberry on my extended holiday to Tottenham Court Road, but after looking at it once, and realising that my energy was better spent doing transplant-y things instead of getting angry, I did not look at it again. I then lost the mental ability to reason, so… Work. Not. Happen. It’s been frustrating and arduous, and it has felt so much longer than four months. And it was four months of change.

Prior to my transplant, since my diagnosis, I had always been in contact with work, to varying degrees, but in contact. I knew what was going on and I knew my place in it. I somehow, and with hindsight I find it miraculous, managed to work during a course of treatment, albeit on incredibly flexible, reduced hours. It was my choice to do so by the way, working kept me sane. I was adamant that I would not need long for my transplant. Evidentially, I was wrong, and that decision was not mine, and before I knew it, four months passed. To put that figure into some sort of perspective for you, the last time I went that long without any employment, I was eleven years old. I may have mentioned this before, but I am proud of my work ethic.

Just as I feel like I lost bits of myself during the transplant, so too do I fear this when it comes to my place at work. I was quite surprised a fortnight ago when I found myself becoming anxious. That’s right, I too suffer from the anxiety that so many 20-30 somethings of my kind also suffer from. For so long, returning to work was something I wanted more than I want the invention of a nice, fat free cheese; that I never considered the possibility that I would feel apprehension about my return. This return is different to before, because I know that I am returning to return. I currently have no intention to go off sick again, but I do not wish to tempt fate, so that is all I will say on the matter.

The return to work is the biggest symbol of my previous chapter finishing and the new one beginning. My challenge is not chemo anymore, my challenge is finding where and how I fit in this world in my new body, and this includes work, for that is what I am going to spend the majority of my time doing. And this my friends, is going to take time.

I found, a whole fortnight ago, that the more others built up my return to work as an event to rival the release of a new iPhone, the more my anxiety increased. It’s a big deal. Employment is a big deal. My government will be so happy that I have realised this. It’s a big deal for so many reasons, not least because I feel like it is a test against My Myeloma, and over the next four months, I hope to discover that I can work full time, albeit with some home working, socialise and remain illness free. The question on my lips is just how much has It taken away? The proof they say, will be in the pudding, a pudding I want to get out the oven right NOW. My return means much more to me than seeing if I can physically work 37 hours a week. The act of walking on the 7s is entwined with something bigger, and I cannot separate it.

On a practical level, my concerns pester, far beyond the nuisance of the crystal maze of when my IT is going to work again. Believe me, that is indeed a problem. I do not know if the odds will ever be in my favour.

I work for and with human beings; I have responsibilities that are more than myeloma, that in itself is a shift. These human beings work at set times, I believe some people call it a routine. I have not had one of these for a wee while, and the thought of now having one, as much as I want one, terrifies me. Trying to teach my body that we need to be up at a reasonable hour, and then to stay up, is proving quite difficult thus far, though it is early days to be sure and my well thought out 16 week plan is not going to plan because the computer has said “no”. In modern times, I can no longer skip breakfast as I once did, it may sound like a little thing, but it adds times to my morning, as does showering (I no longer have to do this at nighttime, to allow drying time for my long luscious mane, may it rest in peace). It’s not just my energy levels a routine disrupts; sitting on a chair in an upright position for a long period of time, is not something I nor my back, feel accustomed with. The few times I have done it, have resulted in stronger drugs and slurred speech. I dare you to have been in my body last Thursday after 11 hours of work and seven hours of bus. Then, do I need to explain why public transport in rush hour makes me perspire? If I do, you have obviously never fractured a vertebrae and still have full use of your body. Lucky you.

On an emotional level, I’m scared of failure. I’m scared of not being able to overcome the above. I’m scared that my illness and the inevitable concessions for the above will cause resentment. I’m scared that I will not regain my ability to be civil. Most of all, I am scared that failure in this, means a failure in my return to normal.

I cannot take any of the above for granted anymore. Sure, some of it is folly, but it is still something that feels new to me. In order to strive every aspect of my life has to be adapted or thought through to succeed. And every time I leave the house or interact, they are there, niggling away at me.

Some people can just get up and go to work, or log on, one day, I hope to be one of them. For the moment, I see every day as a marathon. One terrifying, uncertain and exhilarating marathon. Consider that. Until now, I hadn’t.

EJB x

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Twenty Seven Minutes

Stop what you are doing and open your mouths…. Daycare has managed to get my blood tested, obs done and velcade injected in a record time of 27 minutes. What have you achieved in 27 minutes today? Probably not what the Macmillan Cancer Centre has. That is correct, they did the deed in 27 whole minutes. Twenty seven minutes. It’s a record, it has to be. I was in and out of the building in 32 minutes. That is a world record.

Congratulations to the second floor, you clever Medically Trained People, you. After 41 injections, I never thought I would see the day, when I saw an Elephant fly. I barely had time to enjoy my big red chair.

It really is a new dawn… Well, until next fortnight at least.

Twenty seven minutes. I’m still shaking my head in disbelief, a massive, eleven minutes later.

EJB x

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Acknowledgements

WARNING – This blog contains some uncharacteristic musings

I have forgotten to do something. It is not that I have forgotten to do something exactly, it’s just that I do not know how to do it. I want and I think I need to express my gratitude to my people for carrying me through the last 15 months. I know that I would not have been able to get to this current point, this remission, if it were not for the many people working away behind the scenes. It sounds trite perhaps, to say that I would not have been able to do it were it not for the support I have received, but it is true. In case you were wondering, this is going to get overly sentimental. Get a bucket.. Sure, I am
frequently pleased when people congratulate me on my strength and stoicism, but that it a facade. Any face I put on, or actual strength I have, derives from the people I have had and still have around. I have doubted it, and I have doubted them, make no mistake of that, but it is true. I imagine it is a feeling similar to the feeling the historical character Harry Potter had when he fought the evil Voldemort with his dead loved ones standing by his side. Like that, only my loved ones are not dead.

It does feel somewhat odd thanking people for something that is not over. I just have a time out, and I will continue to struggle and wobble over the myeloma mountains. I will have to continue to draw strength and perspective from those around me for as long as I have left, because the myeloma makes it so. This acknowledgement then, really is just a timely reminder to say that I still need you; it is attention seeking really.

I would be the first person to admit that My Myeloma has not been an easy ride for those around me. It has been hard and at times, traumatic. In case you were wondering, this may include exaggerations too. As much as I tried not to make it so, My Myeloma became the focus of all my relationships. One friend told me recently that people, like me, needed a break from myeloma and by that, they occasionally needed a break from me because the myeloma dominated so much, for so long. Now, I might not whole heartedly agree with the logic, but I understand the sentiment. Myeloma is tiresome. Supporting a weak, depressed sick person, or patient if you must, is tiresome and it is not always fun. I like being self obsessed more than the next person, but not to this degree. People have been there for me, more than I have them and this upsets me greatly. I really did try to make this not the case, but it was inevitable. I need to acknowledge in a forum other than in my head, that My Myeloma has made me less of the friend I wish I could be.

And yet, I look up now, and people are still here and for the most part, I really do not know why. My relationships may have changed, but there is not one person who was here 16 months ago, who is not here now. In fact, I feel like I have picked up a few extras along the way. Say what you want about myeloma and I feel like I have said everything, it really does bring people together. It also makes you feel as lonely as hell, but this is a nice blog. I look at a lot of people now and my internal monologue says slushy things that only I should hear, whilst I fight a desire to hug them tightly.

I do not know how to thank people for sticking by me. Prior to My Myeloma, I rarely expressed my feelings towards others, in anyway but my presence. I believed that my loyalty was enough for my friendships to endure. It may still be enough now, but My Myeloma has made me lose perspective. Medals would be too much, right? This blog is too much, right?
I considered thanking people individually, but then I remembered that although I have a cancer with no cure, doing so, telling people individually what they mean to me, would embarrass me, and I dare say it would embarrass them too, and I really should not be drinking the amount of alcohol required to lubricate those conversations. I thought about listing them on here, explaining the individual role they have had in making me get out of bed, but that too would not have worked, because inevitably I would miss people out or over thank one person and not another, thus causing an argument over something as pure as a Forever Friends bear, and as one friend pointed out at some point during this journey, friendship with My Myeloma and me is not competition.

At times during my first chapter I have felt let down, misunderstood and alone; and I have been confused by absence and silences. Now, however, the overwhelming feelings towards my family and friends are positive ones. I truly could not have done it without you, from your grand gestures to daily presence. So, please enjoy, my thank you;

I thank you for all of it. I thank you for not running away when my heart turned from stone. I thank you for phoning me every day and being my second mum. I thank you for being my mum. I thank you for understanding the medicine. I thank you for letting me be mean to you. I thank you for the sacrifices you have made. I thank you for always knowing exactly the right thing to say, and also for not knowing what to say. I thank you for waking me up every morning and being a pillar of strength for me even if you did not know that is what you were doing. I thank you for telling me when I was being an arse and shouting at me when I do not listen. I thank you for being normal and treating me normally. I thank you for coming to the hospital with me for treatment or waiting with me for my transport. I thank you for loyalty. I thank you for buying me milk and walking it to my flat. I thank you for offering to do anything. I thank you for force feeding me soup. I also thank you for all the cooked dinners. I thank you for all the books you gave me, that I have still not been able to read. I thank you for not letting a bit of myeloma and chemotherapy stop you from telling me off for over filling the bin. I thank you for playing Words With Friends everyday. I thank you for taking my mind off it. I thank you for taking me out. I thank you for always coming to me and sitting on my sofa for hours. I thank you for cheering me up. I thank you for my beautiful television. I thank you for all the legally acquired viewing. I thank you for showing me that family is important and I thank you for making your presence known. I thank you for continuing to ring despite me never answering my phone or returning your call. I thank you for reading the blog. I thank you for changing my bedding and hoovering my room. I thank you for taking me to the football. I thank you for letting me be petty. I thank you for listening. I thank you for acting as a protective barrier in a crowd. I thank you for everything and anything I may have missed above.

Most of all, I just want to thank you for being there, in all your different guises, in all your different ways. I also, most vehemently, ask you not to go anywhere. In case you were in any doubt.

I am very pleased to have met you.

Now, if you excuse me, I think I have to vomit.

EJB x

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Disbelief

For the last fourteen days, I have wandered around the corridors of my flat in a state of disbelief, doubting my ears and those belonging to the head of Mamma Jones. When I was bored of that, my brain waited for the other shoe to fall, because in my world, it almost always does. The shoe drops to the ground, damp and covered in holes, and myeloma wins some more in this game we call My Life.

Let’s face it, since the 17 August 2012, my life has hardly been the warehouse party I would have liked it to be. There have been ups and there have been downs. There have been good cylinders and bad cylinders. There has been treatment and after treatment and setback after setback. I feel like my stoicism, made way to a pessimistic realism disguised with a smile and nifty wordplay.

The last 15 months have not been easy, just in case you were in any doubt. Anybody who wants to know that can know that, because I have recorded them for all the world to see, accompanied by a plethora of grammatical errors and melancholy. The fault there belongs to the drugs and not to me, I assure you. I was once as hard as nails.

The last 15 months has changed me irrevocably. Sure, much of the old me is still about, but to be dramatic, I am not what I once was and nor will I ever be. My Myeloma and me will be forever entwined; the blood sucking, life zapping, filthy bastard that it is. We’re together now and that is how it has got to be.

Two weeks ago, I heard something, four times, that defied my expectations. Unlike many people, who I wanted to greet in a dark alleyway with a pair of nunchucks when they opened their mouths or touched a keyboard prior toy transplant, I did not believe that my transplant would give me a remission. At some point, I was told that in all likelihood, this would not happen. To protect myself, that is what I had to expect. After the dogged stubbornness of my disease, the chances of my transplant failing right off the bat, were high. And still, I went in fighting, backed up by my Support Network, waiting there like a fleet of Lancaster Bombers, with teddy bears on board to protect and comfort me.

And here we now are, back to that pesky disbelief. I did not want to write it down for fear of jinxing it, thinking that I would force the gods that be, the Medically Trained People that is, to shout “CORRECTION, it’s not over, we’re giving you another round of treatment because we have to, and thus, you cannot resume your life.” I definitely did not want that to happen. I do not want it to happen.

I may have uttered the words to one or forty people close to me, but I have not believed them. At a time when I imagined I would be singing and dancing and prancing, I walked around like I was suffering from concussion. I cried. Even Mamma Jones drew a tear and that just plain freaked me out. I have made practical steps that somebody in my position might do, like plan a return to work, spend a few nights pretending I am 21 again and slept, but it did not sink in. I would not let it sink in until I received it in writing. Until I had the proof I needed to know that for however long I have, that I am in remission. There I said it. I am in remission. I don’t think I am in remission. I am. It’s not how I imagined it, nor did it come as quickly as I had wished, but it is here. I now have evidence that there is no evidence of myeloma, and that made my day yesterday.

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I am in remission. I might just say it again, because even with the proof, I still don’t quite believe it.

That damp, dirty shoe is going to fall at some point in my future, but for now I am going to exhale like I have never exhaled before and relish in this feeling that after 15 months of illness, sickness, treatment and limbo, I am free. Well, as free as I am ever going to be from this. And that fact makes me do something I had yet to experience and that is to cry rivers of joy. Joy and relief.

Those of us unfortunate enough to have myeloma know that the magic word of which I speak does not mean a reversal of fortune and a physical rewind to a pre myeloma life. Everything that poisoned my innards, has left a mark, and now the challenge is to learn to live with that. I still experience pain, I am still in recovery following the Big T and I am still required to attend the hospital and receive the fortnightly injection of Velcade. This is why we are intertwined. The story goes on, and hopefully, on and on and on.

In time, I will learn that this first all consuming 15 months were only part of my story. I have to learn to live with My Myeloma now, I have to properly enter the big wide world and discover my limitations and exceed its expectations, and I hope that I will continue to be surrounded by the people I love for the ride.

Right now, however, and I mean right now, at this instance, I can officially say that after so much, so much time, so much pain, so many needles, so many stem cells, so many drugs, that this chapter, this volume, this tomb, and whatever else I have called it, is over. It’s done. It’s closed.

The only thing left to say is, my name is Emma Jane Jones and I am in remission.

EJB x

To be continued… For sure.

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Something Old, Something New

I am not one who always embraces change. I like to feel safe and familiar, though I also like progression, and that is why I am never pleased. Today, I am faced with something that is both familiar and new, and I cannot distinguish whether the distribution is correct.

Some people may think this is strange, but whenever I am confronted with a room that is decorated in red and off whites, full of people in uniforms who know who I am, sitting on a big red chair, waiting for thirty minutes and counting, I feel safe. I feel safe even though only unpleasant things happen here. The sight of my electronics resting on a red footstool is rather comforting, even if I am annoyed with myself for forgetting to bring my phone charger with me. In fact, one would be forgiven, as I sit here sipping on my Costa tea, which has a hint of cardboard about it, that absolutely nothing has changed since I was last in the big red chair, that everybody knows is my favourite. Have I mentioned this before?

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Life has of course changed, since I was last in the hot seat. This has changed. I will not allow myself to think that this is exactly the same as the 40 times I have been here before. It is different. I am making it different. I cannot feel like I have not moved on since I first came here for Velcade on 1 September 2012.

This is a new chapter.

I am not having Velcade to reach a certain point or a target, there is no transplant at the end of this round of treatment, particularly because this is not part of a cycle, and it is not a set of treatment, this is something that I am going to have indefinitely, every fortnight, to hold something off for as long as possible and keep me in the myeloma definition of a word of which we do not speak. That is what makes the here and now different.

I may still be sitting in the red chair, chatting utter gibberish to the Medically Trained People because I am suffering from the fatigue today, occasionally looking at the borderline attractive doctors, whilst writing a blog on my iPad, but this is different. They’ve changed the wifi user name for goodness sake!

I know what you are thinking, there is a part of this story that is missing. Why have I been sitting on the second floor of the Macmillan Cancer Centre for 80 minutes now, waiting for an injection of Cilit Bang? Why have I just had to fill out two questionnaires about numbness and my poo?

The answer is simple, because I have to. It’s the pay off the likes of me have to make when the disease they have is not currently active. I think.

So, it may walk like a duck and quack like a duck, but in this particularly case, it is definitely not a duck. I’m a mother effing swan.

EJB x

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Limbo

Today my months of limbo, a limbo that started on the day I was diagnosed, will come to an end. Sort of.

Since the early days of PADIMAC, I have longed for the day when I am told that I can get back to some sort of normality. Unfortunately, that ‘new normal’, the one I imagined and hoped for for so long does not exist and it took until the months after my transplant to realise that.

If all goes well today, I will be told that I will be given frequent Velcade injections and nothing more, and because of that, I will be able to return to work and I will be able to go on holiday and I will be able to live some sort of life that is not completely dominated by My Myeloma. If all goes wrong, I will be starting another course of treatment. The outcome does matter to me, more than last night’s insomnia can testify, it’s just the outcome I wanted and imagined, is not going to happen. Save for a medical miracle, it’s never going to happen. Today, I have to let that dream go. This volume does not close with a euphoric bang but with a tired whimper.

For so long I held onto the fact that I was living in a limbo, also referred to as twilight by some corners. Since my transplant, I have realised that I had romanticised it, and what I was in, was merely dusk. The truth is, my life with myeloma, as in really living with myeloma is going to be more akin with the last 14 months than it will be to 338 months before it. And this is a reality I have been dealing with via counselling (I recommend it buddies, if only for the self indulgence). If I was told today that I would not be on any drugs, I would still live a life that has to be built around or features a series of concessions, payoffs and missing out. I will still get tired and I will still be in pain. I will still panic if my bus terminates. I will still be able to snap my spine if I shake my hair back and front. I will still be under a cloud of uncertainty, even if it is a lighter shade of grey than the one I am under currently. And, crucially, I will still have myeloma.

Instead of getting back to the ‘new normal’ I fanaticised about, today marks a juncture, where I have to learn to really live with myeloma, with or without treatment, I have not done that yet. I have always aimed for something, had a target, and that target has always been getting through my first transplant, and the pages after that were and remain blank. For all those months, in all those conversations and in even more of my thoughts, I never realised that the challenge of all of this is living with it. Chemotherapy, needles, transplants… They are a challenge too, this marvellous blog has told you so, but they are also a distraction from a harsh reality that I have not yet had a chance to realise.

Obviously, the less drugs I am on, the less concessions I have to make in the life of a single, almost white, 29 year old female, and right now, less will be more for my tired body. That is my wish. I do not and cannot know what is coming around the corner. I flirt with being fine with this, and I am feeling better about it, but it is difficult. It’s difficult because I thought I had reached a summit until I realised there was not one.

I have no idea what is coming next. As a wise blonde haired woman has said more than once, I just have to take each day as it comes. I just really, really hope the actual tomorrow comes with a break.

EJB x

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The Sniffles

Newsflash

HOT OFF THE PRESSES

Stop what you are doing right now

I have a cold. I am talking bogies, phlegm, sneezes and a lost voice, sort of cold. Well, I do not have it now, I had it two weeks ago, but I did not think to tell you about it at the time because it as just a cold, and unless you are an attention seeking weakling, a cold is not a big deal. Everything about my cold felt familiar, which is to be expected given the fact that I am 29 years old and I thus have been around bugs and other peoples’s snot for 29 years. You know what I am talking about, the colds, they are pretty common.

With this cold, my first cold post transplant, I did not want to create a fuss, why would I? After all the side effects I have experienced, I actually find the symptoms of a cold quite pleasant, for they do not distinguish my body from everybody else’s the way everything else does. You know what I experienced with it, because you have had one too, there is nothing sinister about a blocked nose and a croaky voice is super sexy, unless you cough something up with it.

In my mind, having a cold was good, I have longed stopped washing my hands when I touch a door that is not in the compound. Opening up my body to some lesser bugs, builds up my immune system, right? I do not want to live in a protective bubble. I am far too lazy and far too restless in equal measure.

Even though I thought my cold was no big deal, from others, I sensed panic. Oh my gawd, beware of the snot, she has cancerrrrr and a compromised immune system! At first I was told to monitor it (I went and sat in rooms full of strangers and air conditioning instead), then I had to postpone my counselling because other cancer patients do not like colds, and then, I got quarantined and put on antibiotics as a precaution. Normal people don’t get that, they get Lemsip or the supermarket equivalent if they are feeling thrifty. I experienced vigilance.

So the moral of this story is that I cannot just have a cold. I cannot suffer in silence. I have to ring a bell and wear a sandwich board, and winter is coming…. Sniff, sniff.

EJB x

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Regrowth III

Last night, in my not so sweet dreams, I dreamt that when in direct sunlight, the hair on my face appeared to be much longer than the hair on my head, I’m talking male hipster length of beard. It was a megamix of the Twilight franchise. Fortunately, this excessive hair only appeared when I was standing in the sun or on those frequent times when I stand under a fluorescent light. Let’s face it, this was not a dream, it was a nightmare. πŸ™€. Halloween came late for me. The scariest thing about my nightmare, is that I knew that the bristles were there, poking out of my skin even when I was in the dark, and for that there was no cure.

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Now, one should not read too much into dreams, I mean, I have no idea what the one meant the other day where I was on the 7s chatting my work shit, feeling happy. In the case of this particularly dream, I will hazard a guess and say that the unwanted regrowth on my chin, lip and general lower part of my face is making me feel self conscious, manly and ugly, and those do not a confident woman make. Well, that, or it could just be because I was looking at photographs of some fine trannys before I turned off my lights.

Damn you social networks. Damn you steroids. Damn you menopause. I think I really need to listen to some Shania Twain. If only I did not hate her music so…

EJB x

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