Category Archives: Uncategorized

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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VDT/VTD Complete

Last night, shortly after 23:00hrs, I made my way to my Drug’s Drawer, which it’s quite a distance from my bed, removed the packet of thalidomide and felt relieved, that for the foreseeable future, I was taking my last dose of thalidomide. Once I swallowed the two plastic coated tablets, that was it, VTD/VDT was over. I was done.

Considering that I did not know I was going to be on VTD/VDT, nor did I want to, I can say that the last four months, 112 days, has gone reasonably quickly. In that time, I failed to establish the correct name of the treatment, but I do know that I took 224 tablets of thalidomide, 480 Dexamethasone tablets, have 16 more Velcade injections and thus have 112 nightly injections of Fragmin, equating to four full sharps boxes, which needed to be disposed of. All of it was done without a break. My last Velcade injection was last Friday, prior to the long walk to my drugs drawer, I gave myself my last injection of Fragmin, and my last dose of Dexamethasone, thankfully was a good few Mondays ago. The times, they are a changing.

Clearly, it is probably not the last time I will ever take these drugs. At the start of January, I said I had had my last ever Velcade; this was, quite quickly, not the case. I have learnt by now, in this merry game of myeloma treatment, to never say never. I may have given myself my last injection of Fragmin, but if my transplant does go ahead, I imagine that I will be given something similar to Fragmin because I am not going to be moving much, and as the person trained in ladies’ bits and pieces said, my weight makes me more vulnerable. Unfortunately, steroids form a back bone to myeloma treatment according to the Medically Trained Person I asked on Wednesday, so at some point, they will also return to my life. In spite of that reality check, that in all likelihood, last night was not the last time I would take any of the drugs, I still allowed myself a wry smile and an inner flutter of excitement that I had completed this round of treatment. The sight of that empty thalidomide box, my oh my, did it give me goosebumps.

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It is done. One more chapter down.

The journey I am on… Bloody hell.

Mamma Jones said that I should celebrate last night, but unfortunately, after a relatively busy two days prior, I was incapable of celebrating yesterday. I did not leave the flat all day. To be perfectly honest, I do not recall walking past my bedroom towards the front door. I essentially existed within three rooms. This fact, did put a dampener on any celebrations because my nemesis, Mr Frustration reared his ugly head. Though, that does bring me on to the second reason I am pleased this treatment is over. That side effect, fatigue. The fact I have taken my last dose of thalidomide, means that at some point in my near future, the level of fatigue I have been experiencing will fade. It will not be today, but they will and with just 11 days before I go in to hospital (possibly), that is most welcome. It is beyond welcome in fact. I do not want spend any of the days I have left, this side of my transplant, not leaving my flat. No way, Jose.

So, with great pleasure and relief, I can say, VDT/VTD, complete.

EJB x

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The Big Red Chairs

I am a creature of habit and routine. I like things to be a certain way for me to be comfortable. My Myeloma makes me have to have a routine, at first, I fought against it, but now, I am embrace. Any changes to my routine, cause havoc, not that anybody would no, because the havoc stays in my brain. It is still havoc though.

Today is a Friday, which means it is a Treatment Day, which in turn means that the routine and habit is more important than usual.

First things first, I arrived at the clinic late, as usual. Despite being late, I still stopped to buy a cup of tea as usual, from the very friendly man who likes to talk about drag queens, before going downstairs to get my bloods done. There, I have the same conversation with the technician, pleased today, that it was my second favourite blood taking person doing it. I would have been ecstatic if it was my favourite man. Once that was done, I made my way up to the second floor, just 30 minutes after my appointment time, to discover that all four of the big red chairs were taken. Tits.

There is only one place I like to sit when I have treatment and that is in one of the four chairs by the Garden Lift. If I sit anywhere else, I am slumming it. Today I had to slum it. I didn’t take it lying down, oh no, I decided that the best thing to do was to find myself a seat and place it directly opposite the four incredibly selfish people having their treatment in the big red chairs and stare them out. When I say stare, there was venom behind my eyes and evil in my mind. I definitely was not a fan of their collective outfits Yeah, I am passive aggressive. I think we just need to deal with it. Sure, they clearly have cancer, two of them were asleep and the other two were hooked up to cannulas, but I deserve one of those seats more than they do. I deserve it because I always sit in them. And I am me.

I am sure my love of those chairs was stronger than theirs. That fact in itself means I have a stronger claim over them then they do. The chairs offer so many options. I can either put my feet up on the accompanying foot stool, or because the chairs are so large, I can curl up or sit on my feet. It’s like sitting on clouds. I too have been known to nap in them. My coat will be resting on the right hand side of it and I will hug one of the three pillows that live on there. These seats also come fully equipped with a power socket, which is always helpful in this digital age. I noted that none of the old, apparently ill people, were using the power sockets today. Selfish. They didn’t even look happy to be sitting on the best seats to have ever been invented. I’ll admit there may have been times where I did not look particularly happy sitting on one of those chairs, but that is not the point. The point is that it is okay for me to not look happy. It is not okay for others to mope around when they are sitting on paradise. Instead of sitting in a sheltered haven, I was in the green house part of the second floor, where the sunlight made my iPad look dirty and my armpits moist.

I fear that this has not set me up for the day. The break from my routine is made me uneasy. Damn them.

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I deserve what ever I want. I am special. And for goodness sake, I just wanted my big red chair.

Next week, I am marking my territory. Just you watch me.

I just do not understand how people can be so selfish. I guess that is what happens in the 21st century.

EJB x

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Empathy

It took longer than I anticipated after my diagnosis to be able to empathise with the lives of others.

From the start, and I know this because I wrote a blog about it, I said that I did not want things to change with my friends or family, I said that I was the same and I was able to support people if they needed it. I am not talking about supporting people in supporting me, that would just get complicated, what I meant was, in spite of My Myeloma, I could still be a friend.

The problem with this sentiment, as true as it was and still is, my mind, at times, has been otherwise engaged. And then some. As much as it pains me to admit it, when your existence has just been turned upside down and you are taking an obscene amount of medication, the trials and tribulations of everyday life, in the grand scheme of things, do not seem that important, and even on the occasions when I knew they were, getting my brain to engage, was difficult. I am referring to other people’s problems here, I readily admit that My Myeloma exaggerates everything in my life.

For a long time, I genuinely believed that I had lost all my empathy, in particular, my ability to sympathise. For a long time therefore, I feared that My Myeloma was turning me into a rather horrible person. The kind of person I only allow my family to see… I would look at people being happy or sad and, predominantly, all I would feel was a blankness that I knew was wrong. It is not that I did not care. I believe the fact that I knew what I was feeling was wrong, shows that I did care, it’s just I did not know how that worked alongside my self preservation mode, which has a big sign on it that says ‘my life is worse than yours, so get over it’… Evidentially, I *may* have felt a little bit of something other than the blankness. Something green. I continued to worry and dwell about people alone in my bed, like I have always done, being careful to never actually show them that I care (you really are lucky if you get a text message, the man hours that go into one of those puppies is immense), but for a lot of the time, I did not know how those thoughts could possibly fit in with my new life. I feel it is important to make note of the last point, in case you are reading this, thinking that I am a selfish monster. I promise you that that is almost certainly not the case.

Are you confused yet? I am and I have been thinking about this for months. It’s like peeling an onion. Multilayered.

I have discovered that celebrating with others is far easier than commiserating with them. I actually like it when people get good news or indeed, if the people I love are happy. It is rather pleasant to see a smile on a face now and again. After the initial shock of my diagnosis had worn off, I actually found comfort in it. Let us be honest, if I could not be happy for other people by now, I would never be happy in Mylomaville would I? So, as I have seen friends fall in love, buy houses, move in with their pumping partners, get a new job, release an album on iTunes, get engaged or build a Lego airport, I am genuinely pleased for them and it makes me smile, and it most definitely gives me something to talk about, which is always a bonus.

It also means that I am not a total disgrace to the human race and that I am a nice-ish person. Score.

Happiness therefore, is not the problem.

The crux of the problem therefore, really does hinge on my levels of sympathy for others or the lack there of.

I do not speak for all myeloma sufferers when I say that when something happens like getting a cancer for which there is no cure, all the stuff you used to over think and worry about, while they may still be present, pale in insignificance compared to The Diagnosis. They no longer keep you awake at night and only rarely do you cringe with embarrassment when you recollect previous indiscretions. That alone is a learning curve and unfortunately, it is a journey one has to take by themselves.

For me, in my life, I am the only one suffering from myeloma, nobody else in My Network is, and so their lives continue. People can support me, but ultimately their barometer stays the same. The bar for them, of what is shit, has not been raised (or should that be lowered?) like it has for me. What matters to them and keeps them up at night, whilst it may seem trivial to me now, it isn’t for them and strangely enough, that fact is not a personal attack on me. Getting my head around this was beyond difficult and it continues to be so.

For a long time, I did not believe that these two realities could coexist.

I have made many a song and dance about how I wanted people to treat me in exactly the same way as they did before my diagnosis, but my desire for normality, did not really take into account that things had changed. What would have once been normal conversations about a crappy week, were perceived by me to be thoughtless gloating about the lives of fabulous twenty somethings, something that I cannot even aspire to. The anger and jealously this created within me, made me bitter, paranoid and more angry. Garnering any sympathy after these little worms had wrapped around my brain, was next to impossible.

After a while, an undisclosed period of time, because even I do not know when it all suddenly clicked in my head, I realised I could be sympathetic and I could be the friend I remembered. Only if I tried really, really hard. Actually, it is possible if I throw away the bad thoughts as soon as the creep in to my head. Sensitivity also helps. FYI.

Until this happened, I could manage tales of woe if they were presented to me in such a way that acknowledged my situation. I know this sounds self indulgent, but I could not have somebody using adjectives like ‘worst’ to me about their lives, because they don’t know what ‘worst’ is. Perhaps I don’t know what it is either. We know our ‘worst’ and that is it. To prevent myself from being in a situation where I had to challenge my compassion, I avoided certain people, I had to. Yet another thing to make me doubt myself and my relationships, but that self preservation mode is there for a reason. It stops me from screaming at people, telling them that they are lucky and they should just shut their faces and enjoy the weather/their bad date/their day at work/the crappy pub/their train journey/their dinner, because there may come a time when they personally long for a time, in a galaxy far, far away, when these are the biggest issues of their day/week/year. Issues, which leave no lasting mark and can be healed quite easily. Probably with a Twix.

You see, I am like, so totally over it.

I guess, very inarticulately, what I am trying to say is that the sheer weight of My Myeloma overpowers everything else. I want to act and feel a certain way, akin to how people treat me, or once treated me, but the myeloma seems to always want to pull me in another direction. I could just about manage its shadow if my life were just me, but it is not. My Life includes The Network and everything that happened to them before I was diagnosed still happens to them; people still get sad and people still get happy for genuine and superficial reasons and I want to be a part of that. I have to remember that I was once one of those people who would cry over spilt milk.* Somewhere deep in my memory, I have to remember what I was like, so I can metaphorically hold my friends’ hands because I would never actually hold their hands, whenever they feel blue. It is always going to be difficult for me to sympathise because My Myeloma is so much bigger, there is no escaping that, but I hope that I am getting somewhere closer to a point where My Myeloma does not polarise. In terms of my friendship and what I can offer, out is the irrational anger at inconsequential pastimes and in, is cautious reinforcement fitted with an emergency sympathetic noise button. I hope.

Unless of course you have a cold, but that is worthy of another blog completely.

EJB x

P.S. Myeloma may have sucked out all my sympathy, but it has strangely replaced it with an unhealthy dose of over sentimentality. It’s a true story. You should just hear all the nice things I say about you behind your backs.

* To be clear, before the diagnosis, I would never have actually cried over spilt milk. It was a turn of phrase. I probably would have just gone really quiet and hid under my duvet for a bit and/or got drunk.

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Mother F?&@ing ‘Roid Rage

WARNING – This blog may contain language that people may find offensive.

My friend reminded me the other day that I was once a person who did not swear. I made a point of it. I believed that the less one swore, the more it meant when you actually did swear. A bit like telling somebody that you love or hate them I guess . The rarity makes the use extraordinary. I still believe this by the way. However, on the swearing front, it is just too fucking late. Gone are the days where I replaced the emphasise with random words like ‘fish eggs’, and in are days where I just say ‘fuck’, a lot. It makes me feel so much fucking better. I am also on a shit load of fucking steroids and they make me so angry, everybody and I mean everybody is either a wanker, a dick, a prick or if I am feeling really unladylike, a pillock.

I am on mother fucking steroids. MOTHER FUCKING BASTARD BULLSHIT ARSE WIPE STEROIDS.

The PADIMAC steroids intake was plentiful, but it was top ended into Days 1-4 and then I was free of them for the remaining 17 days of the cycle. I can say now that I never felt the ‘roid rage. Well, not as I imagined it to be, in an Incredible Hulk, I am going to go out and perpetrate violent crimes sort of way. I was emotional and I cried a lot, but I never experienced the caricature of ‘roid rage. On VDT/VTD, I take steroids, Dexamethasone to be precise, every week, twice a week. I can confirm that I am experiencing the Rage, in all its glory and it is fucking mental.

For the last fortnight, I have constantly felt like I am on the cusp of something regrettable. I want to shout at everything and everybody and I do not want to shout at anything in particular. I am holding on to the irrationality of my anger, in the vain hope that at the point of eruption, my better self will remind me that what I am feeling, is a result of my drugs and not my person. I bloody hate it. This side effect is a wank stain. It really is. I do not know what is real, and it is made worse because the anger is almost also accompanied by a want or need to cry. I am awash with emotions and there is not a damn fucking thing I can do about it. I think it would be fine if I was just a steroid abuser, pumping iron in the gym to build up my biceps without a care in the world apart from my physique, but the problem we have with my sorry life is that I actually have a reason to be angry and a reason to be upset. Distinguishing between the feelings that are real and the feelings that are enhanced by steroids is next to impossible.

There are not enough words to describe them. If you promise to not go out and commit a crime, maybe I’ll share some with you? Just so you can see… It was at its worse last week, when I felt like I could not breathe. My outlook was grey or red and there was nothing in between. I actually thought the time had finally come to smash some plates. There was, correction, is, no outlet for it. The feeling is always here, hanging out with me, bubbling away. I fear it. I feel like I am constantly having to tell myself ‘don’t react, it is the drugs, it’s those bitch of a drug, it’s their fault, not yours, you are not mad, it is okay, you are sunny.’ It’s unreasonable and my reassurance is not reassuring. I know it is unreasonable, that I am being unreasonable, but I’ll be damned if I’ll listen to anybody else telling me it is unreasonable. That would only make matters worse.

The feeling, the Rage, can start from something real, like my current misgivings about my lost time or something ridiculous, like my utter hatred of insensitive Facebook updates and then my mind will spiral. Everything and anything will pop in there and it is so difficult to shake it off. I fixate. I dwell. I mope. Today, I spent most the day by myself, and I felt like I was playing mental Jenga all day. Fortunately, I only wobbled, I didn’t collapse completely, but my ability to collapse was always there and the worst thing was, I knew it was there. The steroids told me so. I cannot fucking bear it. I am strong. I should be stronger than the drugs. My Myeloma is stronger than the drugs. See? . It is little things like that. The anger is not directed anywhere.

I will just have to remember my twin’s magic words, ‘It’s just da ‘roids’. It is. I know it is. Thank you, Laurie.

I am going to say this once and only once… Steroids are such a fucking cunt.

Best wishes,
EJB x

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Time After Time

I am well and truly in my new treatment cycle and what I am discovering, much to my steroid dismay, is that what I used to consider to be a week, is no longer a week. It is not even close.

My new week is shorter than your work and that is a fact.

During My Limbo, all I did was complain about how bored I was and how tired I was of doing nothing… If I had known what was coming with VDT/VTD, I probably would not have complained so much. Actually, I would have still complained, who am I kidding? I complain about every part of this because so little of it is within my control. Right now, after a weekend of being bed bound, it is clear that my time, or the majority of my time and how it is spent, is no longer within my control. This has probably been the case since the 17 August, but right now, I cannot see the wood through the trees and to put it bluntly, I do not know how I am going to manage it. I am flustered and I am swear word angry. I want to scream and shout and let it all out about the injustice of this. I should be telling you about how my transplant is going, not how shit my new treatment is and how I cannot possibly fathom how this is ever going to end.

I feel like I have spent the last week playing catch up… My Limbo was possibly the worst training for my new treatment.

I have gone from My Myeloma determining 20% of my waking day, to it determining at least 80% of it. And I have hit the ground running. There was no period of adjustment. One day I was not undergoing treatment and the next day I was on a 16 week treatment with no break, shoving thalidomide down my gob daily. PADIMAC was horrible because I had to be in the clinic so much, but it seems like nothing compared to this. At least it came with a week off every three weeks. I learned to live for that week, to get through the dark times by filling my faithful good cylinder. VDT/VTD does not offer me that.

I am not one to blow my own trumpet, but I can see how somebody that does not have my smile behind their eyes would struggle with this treatment. I do not think the Medically Trained People have considered the effects VDT/VTD has on one’s mental health. Perhaps they need a chat with another department. Do Medically Trained People chat with Medically Trained People Who Specialise In Comfort? Everyday, all VDT/VTD offers you is a reminder of your diagnosis, not just a reminder, I am in a relationship with my diagnosis. I have to be home by a certain time every night to take my medication. I cannot take it when I am out because it knocks me out. I cannot take it too late, because it will effect my productivity the next day. In the mornings, on a good morning, I cannot form sentences properly, my head hurts and I probably would not be able to drive a car, if hypothetically, I was not permanently high on morphine.

I am trying to find a positive in this. I am trying because I need to, I have 13 weeks left of this after all. I really am trying… At the moment, and I have no reason to think that this is not going to get worse, I can automatically rule out two days a week with drug fatigue. Not the sort of fatigue somebody could say was okay because it is just tiredness. I am talking bed bound, lying in my own filth, incapable of following the plot of D2: The Mighty Ducks, sort of fatigue. That gives me a five day week. Oh, and these bed bound days fall over the weekend, so quality time with The Network becomes more difficult. On Fridays, I go into the clinic for my Velcade and I have to get up early to take my ‘roids, which by the way, make my perception of all of this so much rosier. That leaves me four and a half days. I have already noted my daily drug commitment… Some people may perceive my morning lie ins idle, they used to be, but these days, I feel like when I give in to it, they are a necessity. Sometimes, I just lie and my brain just hums. It hums because that all the drugs allows.

So, if we take all of that into account, I probably have three and a half days of goodness, spread over the seven.

If I have said if once, I will say it a thousand times… I do not feel like my time is my own. I really don’t. Middlesborough very wisely told me today not to work myself up, and I was of course. I was crying and dwelling on a wasted day, something I have to dwell on because the good days are now so precious. How does one manage the guilt of a wasted day? Can cancer patients actually waste a day? We have cancer for God’s sake. People cut us slack. My worst critic is me. Shoulda, could, woulda. [That might friends, is called ‘insight’]

I will however, acknowledge something good about my reduced working week, although it loathes me to say it, like complementing something on ITV… The last two and a half weeks have flown by. Literally flown by. I may feel like I have had no time to myself, but at least the time has gone quickly. Perhaps, if the rest of the time goes this quickly, I’ll be fine. It’ll be the final stretch in no time at all.

I have been trying to establish how I can exist within this. I have spent most of the last week thinking about it, with the exception of some self indulgent romanticisms, but really, this is what is more important. My options are simple, shut myself off like I did during my weeks on PADIMAC or try and build some sort of routine which encompasses something that interests me and in turn, makes me interesting. I am choosing the routine. My Limbo has made it impossible for me to do anything else. I do not know how long this is going on for, or dare I say it, if it is ever going to end, so I need to stay sane. I always had something to look forward to before and now I don’t. I cannot let my treatment take over. Sod it, staying sane has to be part of my treatment. I keep going back to my early days of saying that My Myeloma cannot define me, and although it keeps trying, I cannot let it. If I let it, I would start randomly punching people in the face and I am non violent. Not lyrically of course, I can slap an insult and give an awesome evil.

In my new seven day week, I will see my friends, I will do some work and I will watch a film. Hell, I have even joined a book club, which is ambitious seeing as I have been unable to read a book since being diagnosed despite being given several books including a lot of erotica and buying myself more. I will struggle with this schedule, but I know me and I would struggle with the alternative more. I need to do it. Maybe with some minor alterations, like a curfew and more fibre. Not everything can stay the same… My cylinder will now be filled weekly and depleted weekly. It’s not ideal, but hey, what is? I have myeloma.

Anyway, perhaps this is only a temporary measure and it won’t go on forever.

EJB x

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Pregnancy Prevention Programme

Thalidomide comes with strict controls, especially for the ladies of childbearing years. I am one of those, especially now the fake menopause is ending. If you do not know why thalidomide requires a signatory, Google it. I do not need to Google it because yesterday I was given a very helpful pamphlet entitled ‘Pregnancy Prevention Programme’. If you do not know what that is about, then I will think you a simpleton.

Relax. I’m going to tell you anyway.

So, my new treatment, like the old one comes with regular pregnancy testing. Now, I understand why this is a requirement, but I am still traumatised by the sex chat I had with a senior Medical Trained Person on 22 August 2012 by my hospital bed. I remember the rules and I vaguely remember where my stash of nearing the sell by date condoms live. Did you know that a condom is barrier protection? Well, it is. Tell your kids.

I am used to the humiliation of being exposed to regular pregnancy tests, even though my treatment and My Myeloma means that I may never have children of my own. I assume though, that one must be subjected to such controls because there are stupid people in this world. One such control, which I had to sign yesterday was with regards to the birth control I was going to use whilst undergoing my treatment. It was great, because I was sitting a room with the nice, new, Medically Trained Person and Mamma Jones and when the question came, ‘what birth control method are you going to use?’ I had a quick conversation with myself, wondering how I was going to answer this question. The first point started, ‘well, there is this boy…’, but I shut that one down pretty quickly to ‘have you heard of unrequited love?. Again, I stopped it because nobody needs to be subjected to that. I then moved on to ‘well, I have cancer, my hair is non existent on my head and you just prescribed me a healthy dose of facial hair inducing steroids and I am in bed by 22:00hrs every night, so nobody is going to want to tap this anytime soon’. Again, I did not vocalise that one. Then, I thought ‘shit, my Mum is with me’., but I think she likes to be apart of these discussions, so I am sure it was fun for her. Fun for me on the other hand… We are very close now, my six year old niece made it so. To put an end to my puzzled look, at the Medically Trained Person’s suggestion, I opted for abstinence. At least then, I can say that is why I am not getting routine Special Cuddles. I wish I had this excuse before. I am not expecting a barrage of eligible bachelors taking pity on me anytime soon either. What is really good about all of this, is that if my circumstances change, I get to talk about it with the Medically Trained People. Thankfully, I am a fan of everybody knowing my business, so it’s just an extra person to text, should anybody realise that I am the Bees Knees in spite of My Myeloma. I mean, I am more mobile now.

I then got to pee into a jug, just to confirm that I had not gotten myself pregnant in the last seven days. I was not. Shock, horror. Relief.

And that was it. Well, until next month when I will have to pee into a cup, correction, jug (targeting issues) again, and then hold my breath for the negative because some people are not aware of personal responsibility. Sure, people make mistakes, but I have cancer, so I have to remember Rabin’s Rules. Well, if the time ever arose and I wasn’t a randy drunk, I’d remember Rabin’s Rules.

At least I thought that was it until Mamma Jones asked me the result of my pregnancy test again over lunch. The conversation went something along the lines of this…

MJ: What was the result of your pregnancy test?
EJB: Negative.
MJ: Phew, I thought it would just be Sods Law if you were pregnant. You know… It’s a possibility.
EJB: No it wasn’t. I am a grown up…. Anyway, they did a test last week…. Bloody Lara.
EJB: [uncomfortable embarrassment]

So all you 28 year olds… Try speaking to a parent about that.

It doesn’t matter anymore though does it. I am not a catch and I have taken a vow of abstinence. I hear that it is really fun.

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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Getting Up Again

Hello there. I have been on a holiday. Not an actual holiday you understand, but a holiday where I have tried my hardest not to think about My Myeloma or my setback. Of course, I have failed miserably in both. Since The Bad Day, all I have done is think about My Myeloma and my setback.

Last Friday, I said to myself, after Housemate had said it to me, that I had the weekend to wallow. In reality, I needed a week. I needed the week to get my head around how horrible this all is. Plus, I needed to get my appointment with the Medically Trained People out the way. Waiting a week for that was torture. Waiting breeds paranoia and I can honestly say that I have been at my most paranoid this week. Not paranoid about whether people like me, that is a given at the moment, no, paranoid about My Life and My Myeloma and how long I have left. Snippets of conversations I had at the last appointment on The Bad Day and a conversation I had on the telephone went over and over my head. And over some more. Questioning what ‘if’ meant and why I was told not to get ahead of myself, and why I was advised to bring a family member. What are they not telling me? What do they talk about in their little weekly meetings? Will I see the end of my twenties?

I spent seven days getting out of bed and I had no idea why. The Support Network were divine. If I was intent on trying not to think about it, they helped. They kept me busy, with food, music and talking. I readily admit that whilst I was physically there, I wasn’t actually there. I was trapped in my thoughts fiddling with my watch or whatever jewellery within my reach. I had conversations and made conversation, but my internal monologue just said ‘cancer, myeloma, fuck off and death’ on repeat. Try as I might, everything else was white noise. I was the best company to be sure. On Sunday night I woke myself up screaming ‘Fuck Off’. My mental state has been sound. That said, it was important for me to get out of bed and do those things. The alternative would have been far worse.

I went into work on Tuesday and that was difficult, but it needed to be done. It was like ripping off yet another plaster. All those sympathetic faces and lost words embodied everything, I imagine, everybody else was thinking. It was just hard to see it in such a concentrated way. I have been practising my sympathetic face since then, bit it just looks like I am slightly constipated, I know this because during PADIMAC, I took photos.

Overall, I think I handled it well. By it, I mean the complete devastation of my year’s plans. I still do not want to talk on the phone. I do not want to be encouraged to talk about it. I know as much as you and that is not a lot. It is unfortunate then, that whilst I do not want to talk about it, it is all I can think about. I am sure it puts my friends at ease in my presence.

Anyway, that is all water under the bridge for yesterday, I met with some Medically Trained People for my appointment. As I had spent all week imagining the worst, it was fine. I met a new Doctor who I was a fan of. Sure, he was a Personal Space Invader, but I have cancer so people are constantly getting all up in my grill and I am used to it. He also displayed a lot of compassion, which I am always a fan of. I need to feel like people care. Over familiarity really works for me, unless you are a locum GP accusing me of being an obese recreational drug using hypochondriac, in which case, then it is not okay. Still.

In short, I am starting a new treatment. Well, as I write this, I have started a new treatment cycle. It is called VTD. That is short for Velcade, Thalidomide and Dexamethasone. I have had two of the three drugs before. As for all the worry about my future, I’ll stick to this for now. The transplant is still on the cards if My Myeloma behaves. Please let it behave.

I am out of bed, I am smiling and I am ready to go. It has to work this time, right?

EJB x

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Chemo Is A Go

Can I get a high five please?

After a bit of drama yesterday and apprehension this morning, I was seen by a Medically Trained Person who told me that my toothache was a toothache and I could have my treatment today. So, here I am, sitting on the second floor of the Macmillan Centre receiving a litre of liquid, which is a mix of cyclophosphamide (chemotherapy) and saline. To be clear, a litre of liquid administered intravenously is a lot of liquid. Like, a real lot. Two hours worth to be precise and before that, I had two bags of other medicine, which apparently, will help prevent me from vomiting up my dinner later.

This is it. It’s the start. It’s what I have been waiting for for six weeks. Longer. I was devastated yesterday when I thought I was going to have another delay. Right now, all being well, is the beginning of the end of this chapter of My Myeloma. I have waited six months to get to a point where I can see an end, and I can. I don’t want anything to take it away. The drugs are going in me, right now. As sick as I will get from this chemotherapy, I simply do not care. I don’t care how sick I am going to get during the transplant. I just want it to end. And today, is a massive, massive step. It is here.

I have never been so happy to have an IV. See?

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Now, let the powers keep me safe and infection free so I can adhere to my word processed timetable.

I just want it to end.

EJB x

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