Monthly Archives: May 2013

The Birthday Present

When I woke up this morning, my body decided to give me a nice big birthday present wrapped in red… Some would say that my body was being thoughtful, but I am undecided.

And so, after three months and some embarrassing hot flushes later, I can confirm, that as of this morning, I am no longer in fake menopause.

Yayyyyyyyy!

This is just what I want on my birthday, it is up there with the rain. If memory serves, this will not be pleasant.

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Happy Birthday

It is my birthday. I am now a 29 year old with myeloma. This time last year, I was just a normal 28 year old. Normalish. Today, well, really tomorrow when I wake up, marks my first birthday with myeloma and this depresses me.

I have always been one who enjoys the birthday. A three day celebration that is all about me; what’s not to like? More people contact you than normal, you get post that is not a bill and if you are lucky, you may get some actual presents to open. Some people may not care about the birthdays, but I do. It’s My Day and I just absolutely, positively, love me. I am fabulous. I am awesome. I am great.

Your average person, after a certain age, may worry about getting older on their birthday, look back on what they have and haven’t achieved, and review what they have and haven’t got and come up wanting. I hear this makes people feel blue, so they get drunk. I don’t really feel like that is a concern for me anymore. Life as a 28 year old changed that.

Last autumn, I looked ahead at this birthday and saw it as a target date. A date by which time, this chapter would be over. I have known for a while that this would not be the case, but that has not prevented me from thinking about it a teeny, teeny, little bit, as my birth date drew closer. I am not where I thought I would be, where I want to be, and my birthday is a reminder of that.

I am now 29. I would imagine most people hitting 29 would be worried about reaching 30. Not me, I just keep thinking, how many more of these have I got? Not as many as I thought when I turned 28, and that is the sad truth. This is not where I thought I would be, not where I want to be, and my birthday is a horrible reminder of that.

Of course, I know all of this everyday, just because it is the 24 May doesn’t mean I have had an epiphany. No way. Today is just a big fat reminder about it all; the passing of time and preciousness of the time left.

Happy Birthday!

All that said, it would be absolutely inconceivable for me to spend my birthday wallowing in self pity. I will not let My Myeloma ruin My Day. I am stronger than that, at least, I hope I am. So, no more self pity today. When I awake, I have a busy day ahead of me, celebrating my birth, as I have done every year before this one. I will see people and I will smile. I have been very clear with myself that this must happen and I have designed the good times so that I do not have time to entertain the bad thoughts. If my celebrations happen to roll into the bank holiday weekend, which they will, then so be it. My birthday is pretty much the definition of organised fun and I am forcing myself to have fun. My logic behind this is simple really, if my future birthdays are numbered, I’d be better off having fun during them than the alternative. No matter how bittersweet I may find it. It makes perfect sense. It should do mind you, for I am now, officially, older and wiser. Just look at my birth certificate.

EJB x

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Certainty

I feel like my treatment can change daily. I also feel like nothing really changes at all.

This is my world.

In the last four weeks, there has been much progression with my treatment. Or at least, some clarity about where I will be heading when I come to the end of VDT/VTD at the end of this month. Until recently, I have not given a thought to what will happen after, because My Plan, did not involve being on VDT/VTD in the first place. It’s all very exciting. Daunting. And scary.

These would have made really interesting blogs individually, but that did not happen, so, here is a round up… I am still trying to get my head around it all.

Friday 17 May

Results Day. The day when I pretend that it is just a normal day and that I do not care about which way my paraprotein has travelled in the month prior. Except I do care, so there is the snag. This time around, I had also built up the relevance of my paraprotein because at my last clinic appointment, a Medically Trained Person had said that the result was ‘important’, but did not explain why. In his defence, he might have done, but I might not have been concentrating because. Was thinking about something else. Probably the pee I was about to do. That pregnancy test always gets me on the edge of my seat. It isn’t just me who sees the importance of my paraprotein level, those in my support network do, and last Thursday, every question I got about it, just made me more anxious about the result to the point where I did not want it.

The thing about my paraprotein, is that I fail the test every time. I do not know whether it is actually possible to fail a paraprotein test, but in my mind I fail it. I want my paraprotein to be zero, but realistically that is not going to happen anytime soon, so I want it to be below twenty. The problem is, I have absolutely no control over what it is. I cannot make it go below twenty or fall lower than it is going and I cannot see this as anything other than a big fat failure. Every time I get hat area protein result, even f it is a reduction, which it was last Friday, I view it as a failure. I cannot just work a little bit harder for this test, and cram the night before, it has a mind of its own, but people ask me about it like I can control it and I know what the results mean. Even after 8 months of this shit, I still do not know what it means.

I do know however that my paraprotein level is stubborn. It likes to hover around twenty. As I discovered on PADIMAC, it can also plateaux. Correction, it does plateaux. At the end of my first cycle of VDT/VTD, it had reduced to 23 and in the back of my mind, I thought, I had been here before and I knew that I would not be witnessing a paraprotein miracle. I would not be witnessing single figures. Last Friday, I knew for sure when I got my result and it had reduced by two. The key thing here, about from plateau of course, is that I had a reduction, and I myself that any reduction is a good thing. It is not the best thing, but it is better than being slapped in the face with a trout.

However, I did not need to convince myself that something good had happened, because something ultimately more exciting got my brain doing Zumba. A Medically Trained Person said, once I had my result, that they just needed to get my transplant in me. Now, for two and a half months, I had not allowed myself to think about a transplant. It was off the menu for me. Any thought of a transplant had to be bad, because of the complete devastation when I found out I was not having one in March. But there it was, the words had been spoken, and for the first time in a long time, I started to hope again that the end was coming. That I was getting close to the end of this chapter. I know I did, because for that weekend, it monopolised my thoughts and conversation.

Wednesday 22 May

Still thinking about what may have been a throw away comment on the Friday, I received a phone call. I was on the 38 bus. I have to answer my phone all the time now, because I am dedicated to my work, so it was a pleasant surprise to find that the call was not work related and was in fact from a Medically Trained Person.

I was informed that at the weekly Medically Trained in Myeloma Convention, I was discussed. It’s not because I am special, which I am, it’s because I am told, they discuss all the unfortunates. So, I was discussed and it was decided that because my level was plateauing, I was not going to have have my fourth cycle of VDT/VTD, no, instead, I was going to go straight to transplant because they did not think my level would reduce significantly with one more cycle.

I hung up and my brain went like this:

Fucccckkkk!?

It was not the circumstance in which I would like to have my transplant. The plateau. There is failure there and that was all I could think of. More failure. More potential failure. Though, I let myself think about this for a teeny, teeny bit and then, I made myself think forward. After all, the mental preparation for a SCT, at least for me, is significant and I had locked all that stuff away, that digging it all back up again was an exercise in itself. Dig I did. I rang people, and spoke to more, made plans based on me not being in treatment and dare I say it, I got excited. Full blown excited. That evening, my head was simply saying “it’s coming to an end, it’s coming to an end, it’s coming to end an.” It is coming to an end.

And then for first time in a long time, I was actually able to look beyond July.

Thursday 23 May

I was minding my own business, doing a spot of shopping in Sainsbury’s, which in itself is a rare occurrence because of the carrying involved, when I received another phone call. This one, again from a Medically Trained Person, took back everything that I was told the previous day.

Apparently, the most senior of Medically Trained People thought that as my paraprotein was still going down, despite its meagre pace, I should remain on VDT/VTD for the last cycle and then have my transplant. In reality, this was just a four week delay, however, I had spent 36 hours preparing myself for something that had once again been postponed. Yoda, wisely of course, told me mid whine that I was in exactly the same position that I was in the previous morning. I did not see it that way. I was being messed around again. There is nobody to blame for this, I am not that petty, well, I blame My Myeloma. Maybe, if I was to offer some constructive criticism to the people who look after me, it would be to check such proposed changes with key personnel before informing me, for a four week change may not be a big deal for them, but it is to me. This is my life. It is my working week and my Sunday rest and every change is a deal on the group text message proportions.

That said, in order for me to continue with the stuff that is living, I found myself in the position, yet again, where I had to convince myself that the course I was on, was the best thing for me. I would make a terrible salesperson, as in a terrible salesperson, however, I believe that since I was diagnosed with myeloma, my ability to sell things to myself, has improved greatly.

Thursday 6 June

It was clinic appointment time. My least favourite half an hour of the month. Mamma Jones accompanied me to this one, I had asked her to attend this appointment on the 22 May. FYI.

In this appointment, I received confirmation of what I had been able to piece together in the two weeks before it. The plan is ‘simple’. I will be having a transplant. Not a hypothetical transplant, an actual, real life SCT in 6-7 weeks time. How so soon I hear you think? Well, I will tell you. I have already been harvested, so, bar a biopsy and a few tests on my heart, I am good to go. Good to go once I have finished my fourth cycle of treatment. Good to go regardless of my paraprotein result.
Or so I am told…

This news, by the way, warranted another group text message.

Now

I realised today that I forgot to get my paraprotein result from my end of cycle on Friday. That clearly is because I do not care. I was also incredibly ill on Friday and the only thing I was thinking about was my bed. Correction, I was also thinking about EMan’s paw. I do not care now, not really. It has plateaued and on that I am certain. Well, I just wrote that I do not care, but I would care if it has gone up… I should probably check that one out. Goddamn.

So, anyway, I like a little flutter now and then, but I will not be taking any bets on the fact that I will be going in for my transplant in 5-6 weeks time. I am planning to go in for my transplant in 5-6 weeks time. I will be absolutely furious if this is not the case, but I am well aware that these things can change. I am aware of this because my treatment seems to be based on this principle. I have every intention at my next appointment to tell the Medically Trained People this. At my next appointment I want a date. I probably will not get one. At my next appointment I want a signed contract saying that I will be having my transplant and this will happen by mid August. I definitely will not get that. It is what I want however, some sort of guarantee that things will not change againand I will not be in a position where I have to convince myself that something I have no faith in, is good. Nobody knows how I will respond to my treatments, but I hope at some point in my life, I can reach a stage where there is some sort of rigid plan with my treatment. I would like to look more than three months ahead. Hell, let’s go crazy. I would like to look four months ahead.

Time will tell. A Medically Trained Person, who has absolutely nothing to do with my care said that there is nothing I can do about all of this uncertainty and I just have to let things happen. He is right of course, and I will do as advised, but come on, can somebody, anybody, just give me a break. I beg of you.

EJB x

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The Roller Coaster

It is something that has been in the back of my head since all this nonsense started, but this last week, I finally acknowledged the sad truth. I, Emma Jane Jones will never be able to go on a roller coaster again.

[sigh]

Sure, I was not going on one every week, but I enjoyed the occasional trip on a thrill seeking adventure ride. I do not think I am the sort of person to grow out of it. I know this because Big Sister is older than me and she went to Alton Towers last week. I was quite jealous.

As with anything I am told I cannot do, I want to do it even more. I want to be strapped in, spun around, go upside down and more than anything I want to feel that nervous anxiety in my stomach just before the ride takes off and then again when you come off it and wait to see how hideous one looks in the photographs taken at the worst possible moment. In this circumstance, I usually look like I am pushing out something really big whilst being incredibly comfortable with my double chin.

It is indeed sad that I am now one of the people to whom the warning sign at the start of each ride’s queue, applies. I have a known back problem. Sensibly, if I will not step outside my front door when it is icy, I am most certainly not going to run the risk of paralysis by giving in to childish fancy. This sort of thought probably goes against the key principles of the roller coaster. You are not supposed to think about being a grown up when you are going on something designed to make you feel sick.I have to. And that is the sad truth.

The most frustrating thing is that I spent a period of my life, morbidly obese and thus unable to go on some of the really scary rides because I could not fit in the seats. That my friends is a very embarrassing true story. If only I had known what was to come. Potentially, I would have lost weight sooner and taken up residence at Thorpe Park. After I lost weight, I got to spend a wonderful three days with my family in Disneyland going on all the rides they had to offer and stuck two fingers up at the Tussauds Group, by giving them my money and going on all their rides. It was so much fun, it is was mindless and I felt free.

Now, My Myeloma dictates that this sort of fun is no longer possible for me. Unfortunately, any thrill seeking is going to have to be done by broadening my mind. Fun.

EJB x

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Cleanliness Is Next To Godliness

Everybody who is anybody knows it is important to maintain a certain level of personal hygiene. There really is no excuse for filth, even when you are in the middle of a steroid crash. Nobody likes a sweaty fanny. Really.

In the last week, I have tried, as much as possible, to keep my body smelling fresh. I have changed my knickers, pyjamas and whenever showering constituted a danger, I baby wiped. I was able to do this because of a thing called personal responsibility. Not everybody has that.

Somebody very dear to me, does not have personally responsibility and does not take it upon himself to wash when he is getting dirty. Unfortunately for me, the more time we spend together, in my bed, the dirtier he gets. Since I was diagnosed with myeloma, I have found that my beloved and me spend a great deal of quality time together, alone. Sometimes we not alone come to think of it. Occasionally, we cuddle in public too, when I say public, I mean in my kitchen. Never in the toilet. My beloved has the most amazing smell, that is enhanced by his lack of washing. The smell is addictive and all so very comforting when one is feeling so poorly, not even their mum can make them feel better. I have spent much of the last week, rubbing his soft skin against my face. Inhaling.

The issue, which I think is patently clear, is that I need the people around me to be clean. This will be especially true if I ever get a transplant. I don’t need people bringing germs into my bed and nostrils. I also need comfort and he gives that to me times infinity. He has special washing requirements, which further complicates matters. Only Mamma Jones’ is allowed to wash him and when that happens, it takes at least half a day of separation. It has been that way my whole life.

I don’t think people should judge, and I am not sure whether it is entirely appropriate to air my dirty laundry, but after a week of constant snuggles, my beloved EMan looked something like this:

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Just to give you a benchmark. He should be a block navy blue.

It’s not his fault. I can confirm that yesterday, he took that dreadful trip into the washing machine and then, when that was complete, the tumble drier. For five whole hours. It makes me sad, but I could not have him running around with my dirt on his face. I have to look after myself all.

He now looks like an almost new being.

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Maybe one day, he’ll get a face again (that is a hint Mum). My beautiful, loyal, elegant EMan.

Hearts you.

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The Book of Mormon

Once upon a time in Myelomaville, I set myself numerous targets and challenges to achieve in an attempt for me to cling on to something normal. I have stopped setting them now, in part, because I feel like it is better to let things happen naturally, because My Myeloma is unpredictable (it is also predictable in terms of my cycles, confusing huh?) The other part is because I cannot handle the total devastation when my hopes are dashed, but I do not like to think about that.

That said, for as long as I can remember in my new life, I was to be able to achieve one thing, that over time, in my head, became a symbol of defiance. I was going to be able to go with my friend, who I basically forced into giving me his spare ticket because I have cancer, to see The Book of Mormon. To put this into some perspective about how difficult a task this was, there was a time when it was incredibly difficult to get tickets. Today, they are just expensive. Regardless of that, in my head, going to see the show became my marathon. I was going to be able to go, regardless of whatever circumstance I found myself in. I had to. Anything other than attendance would equal one big fat win for those cancerous cells. For a long time, I thought that I would be fighting the post transplant demons when the time came to go to London’s West End, indeed, the date of our tickets was changed to accommodate this fiction. After my Bad Day, the first thing I thought, seconded by my friend’s wedding, was, at least I can definitely go and see The Book of Mormon now. If memory serves, it is actually something I discussed with others, in an attempt to find a silver lining.

Imagine my horror then, four weeks ago, when I was last crashing from the ‘roids and I realised that Wednesday 15 May fell smack bang in the middle of my predicted crash. I felt physically sick, such was the importance of going to see the show. I cannot articulate how this became something so much more than musical theatre to me and I have absolutely no idea why. Such was the importance, I decided that regardless of my crash, I would go. If this meant that I would fall asleep in the theatre, then so be it. If I was going to go down, I was going to do it fighting.

And so Wednesday came, I felt terrible. It took me three hours to have a shower and get dressed because I had to break every movement with a nap, I spent £40 on taxis because public transport was a no go area, but on Wednesday night I left my flat and managed to get to the Prince of Wales Theatre and boy, was it worth it. Not just because the show was a delight that Haemo Dad wouldn’t get. It was worth being bookended by sheer exhaustion and pyjamas.

I am sure in different circumstances, I would have enjoyed it more, for I really was a zombie on Wednesday. I cold barely converse/focus and for that, I must apologise to the universe. In spite of that, the less than ideal circumstances, I am so proud of myself for not giving in. My last week has been controlled by My Myeloma, but I like that somewhere inside me I managed to find four hours where I could do just what I wanted to do. I paid for it after, but I repeat, it was worth it.

I would like to confirm that I definitely did not secretly cry when the lights went down with relief and pride in equal measure.

And I also realise this blog would have had more of an impact had I written it on Wednesday, but I spent my energy doing something which was much, much more important.

EJB x

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Bed Bound

Today is Sunday. That means that I have spent the last six days feeling ill. When I say ‘feeling ill’, I do not mean I have been feeling slightly under the weather. I have been crashing and it has been far from pleasant.

I anticipated the crash, it is part of my treatment cycle and it is caused by the steroids I took last weekend. I would have mentioned it before. Although I anticipated the crash, and I opted to experience it in this way, it does not make the process any easier. Once upon a time, I used to look forward to a day or two where I could just lie in bed, watch movies and sleep, but as I realised this week, for all those times I had the ‘flu’, I was never really ill. Ill is being completely incapable of getting up and feeling so poorly that you just long to fall asleep to make the time go faster. I can say with all authority now, I do not enjoy lying in bed sleeping and watching films anymore. After nearly a week, I am bored of it and there is nothing I can do to break the cycle. I just have to ride it out. I like a theme, and on Thursday I thought it was appropriate to watch films about people escaping from prison, because that I was I want to do. I want to escape from my current prison. It turns out that there were only two on Netflix that matched this, so my plan was buggered.

I am ashamed of my steroid crash. I am ashamed of my inability to do anything when I crash. I feel like I let myself and others down when I lie in my bed for six days. I had so many things to do this week, but despite my will, I could not do anything. I say will, but if I am truly honest, I did not have the energy to have will either. My brain for the last six days has been categorised by blankness. Nothingness.

Around the middle of the crash, I thought that perhaps I was making it worse, that I was making myself feel worse by giving in to the weakness. Lying in bed and sleeping for hours is not a constructive use of my time. And I have absolutely no control over it, and I hate that. With a crash comes isolation, and with that isolation comes acute paranoia that people look at me, look at what I am doing and think that I can do more. The frustrating thing is, I look at myself like that. I think that I should be able to do more and have spent nearly every hour wishing for this crash to be over, so I can properly get out of bed. I realised on Wednesday that I had not looked in a mirror for over 48 hours. That is something and when I did look in the mirror, all I saw was a dead drag queen looking back at me; I think it was the beard. I woke up on Friday and thought it was over, I even vocalised it, however, this was not the case. It may have been better, but it was not over. I managed to get to the clinic and a train, but that was me done. I knew then, for sure, that this is not just laziness. It may appear like laziness to an outsider, but all the effort and longing on my behalf to get myself out of bed, simply resulted in me having to get straight back into bed again.

Inevitably, when one is imprisoned by their body for a prolonged period of time, there is a tendency to lean towards self pity. The drugs that got me in this position greatly aid this process. I am sure that in reality everybody who has ever met me, or passed me on the street, has spent the last six days in as much pain as I have. They have thought about me every second of everyday and empathise so fully with my predicament, that they cannot live their normal lives. That’s the reality, but my mind says everybody has forgotten that I am sick, and forgets how difficult some days are for me. My mind says that I am a nuisance and when I say that I am ‘ill’, people think I am just a broken record seeking attention. My mind says nobody understands how poorly I have felt. My mind says that everybody but me is living a hedonistic lifestyle and I am not even a consideration. If I didn’t have to live through a crash, I certainly wouldn’t consider it. Now, I can hear a voice in my heading telling me off for these thoughts and these thoughts are yet another reason why I take the steroids in one go… My mental state will thank me next week for three whole weeks and I have to hold on to that.

Outside of sleep, I have thought a lot this week about my crash and why I am finding it so difficult. I experienced illness like this on PADIMAC, so I should be an old pro by now. The main reason I find it so difficult is because I manage to live with My Myeloma now. Before Christmas, my life was My Myeloma. Outside of this week, I live as active a life as I can and that is just marvellous, unfortunately for now, it means that I feel the hiatus so much more. I can feel everything stop, because I have more things to stop now. Admitting on Monday that I was incapable of being ‘normal’ took an enormous amount of courage on my part. I manage to live in spite of My Myeloma and for this one week, I have to let it become the boss of me again. I hate that.

The crash is the pits.

So that’s that then. The reason I have been quiet and the reason I have been a bit testy. Fingers crossed it will end soon. I have to get back to normal. I have a week planned.

EJB x

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Lazy Bones

I think I have been incredibly lazy this last week. I cannot actually gauge whether this is true. I try and recall previous weeks and months since My Myeloma hit and I do not feel like I can compare my laziness to anything I have already experienced.

I feel incredibly lazy.

The problem, I suspect with now, is that my mind is able, but my body cannot get enough sleep. Bar the odd interruption at night, I slept for 12 hours a night over the bank holiday and when I woke up, I didn’t want to do much. My body was saying no. The latest bout of sleep is not accompanied by any sense of illness, and thus, every time I give in to it, I am riddled with guilt. I imagine all the things I could be doing, but when I am in that moment, I just want to carry on relaxing. Last week, I had a whole plan, I was going to achieve so many things, but to be honest with you, I achieved half of it and what I achieved didn’t really involve any socialising, despite how much I wanted to see McKenna. Sure I went to Northampton on Friday, but that meant that Saturday was pretty much non existent.

I find my lack of energy frustrating. The mornings continue to be a struggle and I imagine will remain so, but it creeps up on me whenever it wants now, at least for the past week anyway, aka, my barometer. I know that realistically, I would have experienced something similar before, on many occasions in fact, I just can’t remember them right now and plus, I like fixating over something to do with my health. My current fatigue is quite different to a steroid crash, when I do not feel guilty because I do not have the energy. As for now, when I am not feeling guilty for wasting my ‘healthy’ days, I actually find it quite pleasurable.

Cancer hides a multitude of sins. I wouldn’t have got away with it before.Aren’t you getting dressed today? I can’t, I’ve got cancer. Sleeping until 14:00hrs is not an acceptable lie in. I can’t help it, I’ve got cancer. Emma, change your knickers. I can’t get out of bed to wash my clothes, I have cancer…It can go on.

I imagine that I beat myself up over days that I perceive I am wasting, more than anybody else would. I don’t want to waste them. I even reason with myself that wasting a day means I can have a better day the next. Sometimes that might be true. Sometimes, I just carry on lying in bed like a slug, using up our data allowance.

I am sure people will have their opinions about how I should spend my day. They keep them to themselves, well, at least away from me anyway. If I think about it rationally, I do as much as I can to make my life not just about this. When I put it like that, that is how, if it were possible for me to view my existence from the sky, I have to view it. I want gold stars. I am not always rational though, I will continue to beat myself up.

However, if somebody else apart from me were to question it, my existence, and question me and my bed times, I’d probably punch them in the face. Not metaphorically. I’d actually punch them, if not me, EMan would. My theory on a lot of this is, have myeloma, at the age of 28 and then talk down to me about how to manage it with less time in bed, until then, my opinion rules.

There are always exceptions to my rules however, and on this specific subject, I found one last weekend. She is called Lara. She is six.

So, on Saturday, I was embracing my bed at Mamma Jones’ house and this little skinny thing found herself in my room at sometime after midday and said;

” Get up lazy bones.”

“Emma, you are a lazy bum.”

“Your room smells like farts. Farts and poo.”

“Are you still in bed because of cancer?”

And if that was not enough, she insisted on taking a photograph. I let her because she is six and it would be wrong to punch her in the face. I guess I love her too, but still…

The photo she took was a good reminder. There really are days when I just cannot get up, and for now, it has to be okay. Not for you, for me.

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I’ll try.

EJB x

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Better Out Than In

Better Out Than In, that’s my motto. It’s my motto for every aspect of my life; not just for my faeces. Holding stuff inside you, I find, just manifests into something much bigger, heavier and uglier, and before you know it, you look just like the woman in the new advert for Senokot. Uncomfortable and ready to cry/stab somebody with a lollipop stick.

I am a human, and thus I am fragile, I am not infallible, and there are times when my body and me to not heed our own advice.

Not this last week….

It gives me great pleasure to announce that for the last seven days, I have woken up to the natural desire to play sudoku in a room in my flat (or Mamma Jones’ house) that is not my bedroom. For about five minutes. There may have been two occasions after the first puzzle, where I may have had to use a quick cheat to help me through a tough spot, but that was only because I was being impatient. Regardless of that, and I thought I needed to be honest, I am proud of my body. I cannot remember the last time it wanted to play sudoku seven days in a row at roughly the same time everyday. It won’t last, but it makes me feel better, laying down, depositing, those numbers. Better out than in.

Clearly, when things such as this, work normally, I do get a slight fear that my treatment is not working. When I am very ill, bedridden with side effects, I have to tell myself that it is only the treatment working overtime and it’ll be worth it in the long run. The problem with that logic arises when things are hunky dory. It’s fine though, because I really have been super tired this week, so, I hope that’s enough. It cannot be all His tit to my tat.

A much lighter and cleansed,
EJB x

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Stress Management

In the last few weeks, I have not thought that much about the fact that I have cancer. When I initially thought of that statement, I was going to say ‘recently’, until I recalled that my last crash was only three weeks ago and I know that back then, all those hours ago, I thought about it a lot. That’s the thing about My Myeloma; I’m only as good as my current good weeks. The bad gets forgotten, and it will stay that way until I start chugging down those ‘roids again on Friday, actually, when I come off them on Tuesday.* So, to rephrase; today, I have not thought that much about the fact that I have cancer. It may even extend to last week too, if we can exclude a few live episodes of the roadshow here and there (I even did one on the phone). Ah, the beauty of telecommunications.

Fatigue *may* have been stalking me a bit this week (just ask my pillows), but apart from that, and whilst we are on the subject, some bone pain, I feel a-okay.

Today, for reasons I am not going to share because I am sure you would find it mind numbingly boring and EJ Bones is about cancer. It’d be called EJ Jones otherwise, and then I really would get into trouble telling people about all the aspects of my life and The Network. I’ve watched Julia and Julia. I know about the pitfalls of blogging. Anyway, I am digressing… Today, I worried about something that wasn’t cancer. It actually preoccupied my thoughts. I know that that has happened previously in the last eight months, but I cannot remember when exactly (like I said, only as good as my current good week). Having to engage my brain in something wholly, not wholly, but you know, a lot, with something that for today and perhaps tomorrow and even the next day depending on how tomorrow goes, that is not my illness, banishing It to the sidelines, no matter how stupid I may look, or how flustered I get working things out during this break, is kind of nice.

I nearly text somebody earlier, I have the draft, it went something like this:

Today would have been a bad day if I did not know what Myeloma was and I didn’t have it. As it happens, apart from some testy moments which made me sweat (for once not a flush), and tiredness, I think I enjoyed myself. Is it strange to think that? See you tomorrow. You’ll know it’s me, I’ll have bags under my eyes.

I am always being told that I need to take things easy and I do. My focus, my main focus is to get better (whatever He looks like). Today, for example, whilst my mind has been otherwise engaged, I still had to make concessions. I got into bed at 21:00hrs, shortly after taking my nighttime drugs, so that I can get up in the morning. That said, I have to get the balance right between getting myself better and living. The two are not mutual exclusive. I feel better when I am doing the latter. I’ve been going through this for long enough to nearly always know when to call something quits. So, people, do not panic. I suppose, one could argue that it is wrong for one thing to occupy my thoughts at anytime, but, I’m learning slowly and every normal person gets a good four hours on me a day, so they can fill their minds with more things. And, really, don’t rain on my parade.

I know I am not in a long term, sustainable position, but it is the best I can do for now. Damn. It is not sustainable is it? Not beyond my treatment anyway… Well, I do need to see people and tidy my wardrobe and read a book and bake a cake and go to the cinema and some other stuff. So yes, it is not fair nor sustainable. But it is my now.

I suppose what I am trying to say is that today, I feel like I actually lived with cancer. Good and bad. Omnipresent as always, but not everything.

It didn’t make me sad today. Not once.

EJB x

* Note to self and steroids, must not be ill next Wednesday night. I have a date with some Mormons. Actually, do Mormons feature in The Book of Mormon? Is it appropriate to keep saying Mormons? Political correction. Note to self, must not be ill next Wednesday night. I have a date with some contemporary musical theatre.

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