Monthly Archives: June 2013

Reminiscing

Occasionally, I love to indulge in a bit of pre-myeloma fanaticising, reminiscing really, about what I was like before this happened. Love is definitely the wrong word. I am not a sadomasochist. In recent weeks however, despite my best efforts, I have been looking back to what I was like at this time last year, and given what I know now, I find it all terribly interesting and somewhat tragic.

It was my friend’s birthday last Friday, on the solstice, and I could not help but think back to her birthday last year, when I rocked up for dinner wearing a sling. I was wearing a sling because I had been told in the days prior that I had injured my rotator cuff. I was not provided with a sling by the nice locum doctor*, but a search on google told me that this would help the healing process. That week really, was the start of it. I had noticed the pain before, but that was when I got off my bum, and went to see my GP. It was the start of the journey I now find myself on.

If I look back now, at the pain I experienced then and how, over the following two months before I was admitted to hospital and diagnosed, my body slowly deteriorated, it surprises me how blasé I was about it. It hurt sure, especially when August hit and it took 20 minutes to get out of bed, but in my mind, it was trivial. The cause I mean, was trivial and so would the remedy be, just as soon as I was taken seriously by the Primary Care Professionals. I did not think it was myeloma level of serious, so why would they?

I feel silly for wearing that sling. I feel silly for telling Tom, Dick or Harry why I was wearing that sling. We know now that I was wrong. Hideously mistaken. Try eating a meal in a restaurant, whilst wearing a sling. It’s not ladylike. Let’s face it, I looked like a twerp. At the time, I felt like a fraud, but now, with the wonder that is hindsight, I know that that sling, ‘borrowed’ from a first aid box on the 7s, did absolutely nothing and that makes me cringe with embarrassment. The sling did not make anything better. It did not make the pain go away. The reason I could not open those fire doors, was not because of something I had done to my shoulder and the pain was not going to go away with nurofen as advised by the nice locum doctor**. Two courses of treatment, involving a fair amount of poison and twice daily doses of morphine has not made the pain go away completely. A bloody sling?! What was I thinking?

I imagine that until the 14 August, I will be reminiscing just that little bit more. It cannot be helped, though, the transplant may numb it. Not only did the birthday last week make me reflect, but the British Broadcasting Cooperation’s sports department is currently offering daily coverage of an event in Wimbledon and that red button reminded me of an even bigger sporting event that took place in London, 2012. I was watching the current event on Monday and a week at the start of August last year came flooding back to me like it was yesterday. The memory was conflicted. I loved being able to watch a variety of sports all day long. That was a hoot. At the time, the sling had gone, but I was in more pain. Much more pain. I could barely move, on the one day I attempted to go into work, I was sent home because I was ill, apparently. The sending home, by the leader of leaders, made me cry. Before 17 August last year, I rarely did that, cry. Perhaps I should have realised then that there was something others would deem serious wrong, but alas, I did not. I was still waiting for the nurofen to kick in and they had confirmed I did not have lung cancer, so I thought everything was fine.

I do not know if my trip down memory lane is good for me or not. It is the mood I am in and I cannot block it out. If does make me wonder whether I have actually got anywhere since then and since my diagnosis. So much has changed, but medically, I do not feel like I have travelled very far and at least a year ago, I was ignorant to it.

Not knowing, was so much easier, albeit, much more painful.

EJB x

* She was not nice.

** She really was not nice.

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Little White Lies

It is a well documented fact, that I do not live on a schedule of my making. My body demands my current schedule, but it is not the schedule I envisaged for myself a year ago. The Medically Trained People have more control over my long term planning than I do. I should probably add, that I make the most of it, most days I have little acts of defiance, but I can only do that because I live day to day, and not week to week, month to month. For the last four months, if anybody were to ask me what I was doing or if I wanted to do something post July, I would not be able to answer. I would not be able to answer, because I did not know. I did not know where I would be. I still don’t.

I do, however, from last Friday, have a slightly better idea. It will, unfortunately, remain an idea for a few more weeks, because myeloma is not that clear cut. Myeloma is an inconsiderate bitch.

Previously, last week if my short term memory is being kind, I voiced my concerns about the Medically Trained People moving the goalposts, changing the date of my transplant by pushing it back further than the proposed six to seven weeks. Pushing it back, because that is what my experience told me was likely to happen. On Friday, I discovered that the goalposts had indeed been moved. The provisional date for my SCT is not in the six to seven week timescale, it is in fact, in a five week timescale, meaning that in three weeks time, I will, correction, may be packing my bags, giving EMan a wash, and going to stay in a magical place called The Cotton Rooms, before I am reunited with T13’s Angels. I am told that my holiday will be between three and four weeks, before I then get to have a longer holiday in a little island known as Bed.

Since Friday, the majority of people I have spoken to have said that going in to hospital a week or two weeks earlier than I had started to prepare myself for on 6 June, is not a significant issue. The sooner the better they say. I agree with this too, of course, for I categorically do not want to be in hospital after 14 August. Turn that coin around however, and the thing that I have been waiting for for six months, now seems to be happening too soon. Too, too soon.

I do not know if I am ready. I want to let my hair down (metaphorically) before I spend an estimated three months recovering. I want to do fun things. I want the opportunity to fill up my good cylinder before the bad cylinder becomes my main service provider. I have not learnt how to use my sewing machine yet for goodness sake. There isn’t really time for that in the next three weeks. Let us not forget that I still have another ten days on VDT/VTD, so the opportunity to have some mad, crazy fun is limited because I am a sleepy bum, who likes her bum and her sleep. Being a sleepy bum has not stopped me from planning to have some mad, crazy fun, but I fear it may prevent the execution of it. It may sound trivial, but I feel like I need to replenish that good cylinder, for I do not know how I can get through the coming months without it and when I will next get the opportunity fill it. There is just no time to and this not only frustrates me, it scares me. I feel like I have so many conflicting priorities, that I will worry and concentrate on them so I feel guilt free and not really have the time to just, be. Then, before I know it, it’ll be the 17 July and I’ll be missing my SMART TV. Then before I know that, it’ll be a week later and I will be shitting in a public toilet.

It is a Catch 22. I want to plan. Not only do I want to plan by filling up my good cylinder, if that is indeed possible, I want to prepare myself for my transplant and whatever that is going to entail. I am going to be incredibly poorly, I am going to lose my eyebrows and I am going to feel isolated and lonely in an environment that is not my own. I did this ahead of my first transplant date in March and I felt ready and that made its cancellation taste so much more bitter. I do not want to feel the way I felt on my Bad Day ever again. Unfortunately, I will not know, and presumably, neither will the Medically Trained People, for certain, if I am having my SCT until a week before I am due to have it. A week, by the way, is a conservative estimate. The reason for this uncertainty, is because they need a bone marrow biopsy and that is not happening until 3 July and the results take a good week to come back. For some reason, this biopsy could mean that I do not get a transplant and presumably, that my life span has reduced some more, so, that is something to look forward to. By the time I find out for certain whether I am to leave my flat for a prolonged period of time, it’ll be less than a week before I go into hospital. It is a Catch 22. Prepare and risk being disappointed. Do not prepare and be unprepared. This conundrum has been going round and round my head since Friday and I am in a pickle. I am trying to carry on as ‘normal’, but in everything I do, I see a countdown. Tick tock. Tick tock.

In this interim period, my strategy is Carry On As Normal With Added Extras. The ‘added extras’ are enjoyable things I happen to find myself doing around my treatment and need of sleep. It is not ideal, because the truth is, I do not really have time for ‘added extras’. I barely have time to see people. I try to see people, but it usually ends up with me over booking myself by attempting to be out of my flat for more than ten hours, feel pressured by myself, and then feeling incredibly tired and incapable of sleep. Attempting not to dwell on my latter point, I may have booked a ticket to the theatre and an exhibition and I may have had a family day out with the Cottams on Saturday, I have also planned a bake-athon in my kitchen, but I am doing these things just because I can and not because I need to.

My short term memory also tells me that I told you that I can sell anything to myself. I am selling myself this lie. It’s two lies really, the first lie is me preparing for my transplant without actually preparing for my transplant, and the second lie is me convincing myself that three events in three weeks makes fun. I lie however, so that I can carry on for the next two and a half weeks, and then, I guess, I will jump whatever bridge I find myself on then. After all, I have managed to get this far.

EJB x

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The Lover’s Tiff

I have made no secret of the fact that I harbour a little torch for my walking stick. My feelings may be stronger than that. We are in a relationship. It’s ideal really, because He does not talk back to me.

Since the start of our relationship, there have been a few instances where He has decided to run off. Perhaps it’s because I am high maintenance, I don’t know, but He has these occasional disappearing bouts which leave me heartbroken and in need of Magic FM’s Ten at Ten. For the rest of the time, we are very happy together. We hold hands and He feels valued. I am sure of it.

This week, we had an episode. We had gone out for dinner and on our return, we decided to pop into Sainsbury’s to buy some orange flavoured ice lollies. I thought everything was fine. We had spent some quality time together; things were good. So, imagine my surprise the following evening when I went to leave my flat for an excursion to the BFI, and I discovered that my stick was not there. He had disappeared. He had gone. It was over.

Two days went by. I retraced my steps and I could not think where He had gone. I thought that the end was here. Our relationship was done and I was going to have to confront the outside world by myself. In that two days, I did confront the world by myself and let me tell you something for nothing. Public transport, without my anchor, is terrifying and dangerous. Without Him in my hand, nobody knows I am sick and nobody was willing to give up their seat. Walking down the street, I felt alone and I knew that I am not at the stage in my illness yet, where I can venture outside my front door completely alone.

Fortunately, by Friday, I remembered. I remembered getting so excited that the orange flavoured ice lollies and if I am honest, the Ribena ice lollies were on offer, that I put them in my basket and left Him learning against a glass door staring at the choc ices. I went on to google, I got the telephone number for the Sainsbury’s in Dalston and I dialled. I then asked the embarrassing question.

Me: Um, hello, I know this sounds strange, but do you have a lost property and if yes, has somebody handed in a walking stick?
Sainsbury’s Customer Service, Dalston: No.
Me: [silent devastation]
SCSD: Actually, we have something, it’s silver. Can you describe what it looks like?
Me: Yes. It is silver…. It’s a standard NHS issue walking stick, with a grey rubber handle, and there is a cap missing on the handle so you can store things in it. I love it. It has a rubber bottom as well.
SCSD: Yes, it is here. Just come to the Customer Service Desk.
Me: Thank you so much [exhale].

He was collected later in the day. I approached the desk unaided and left limping. To the passerby, I must have looked like a benefit cheat. I did not dwell on this, for I know why I need my beloved. And let’s face it, if it were not for me, He would have no purpose in life.

People may wonder how I could mange to leave my stick in a store and not realise. It’s not because I am absent minded. No way. It’s not because I cannot multitask. Not even. It’s not because I lose things all the time. Think again. It’s because I am a fool in love with a big, long stick.

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Every relationship has its ups and downs right?

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Battleship Potemkin

Last night, I went to my Safe Place, also known as the British Film Institute to see Battleship Potemkin. Once upon a time in a galaxy far, far away, this sort of jaunt would not have been a rare occurrence for me. Indeed, each month, my deposable income would be spent on bettering my mind in the cinema or if I was feeling really flush, enjoying other cultural endeavours. It was my thing. It was my precious. I wasn’t even picky about what I saw, well, not the latter anyway. I had this thirst to see as much as I could within my budget and I was yet to develop my personal taste enough to have an opinion. I coulda been a contender. If I was not frequenting a cinema, and I had a free couple of hours, I would watch a film at home. It was my relaxation.

Sadly, I have have a problem. It’s a tale as old as [chemo] time. I have chemo brain. Strangely, I have had said brain, since I started chemotherapy. As a result, I have no concentration span and a questionable short term memory. I also have fatigue, nausea because I have cancer. Add all of these things up together and what you have is a valid excuse for me allowing my brain to turn to mush, with marathons of TV procedural police dramas. My television is often on, but rarely am I truly committed to the plot, my brain does not allow it and this pains me. My former self was somebody, but my chemo brain has turned me into a bum. I try to watch a film and if I am not in the zone, which is most of the time, I’ll switch off within ten minutes and start my invisible brain drawling. At times like this, I do not need to ask myself if I feel lucky, because I know I am not, punk. I feel cheated and frustrated, because I know I am capable of so much more.

So, back to last night. My tickets had been booked for a month and I was incredibly excited about exposing my brain to something that is slightly more challenging than a murder mystery that can be wrapped up in 38 minutes by people with really good teeth. A Russian silent film about the 1905 uprising, billed as one of the greatest films of all time, fitted the bill. It fed the part of my brain that spends most of its existence in a corner. Such was my enjoyment, that when I got home, I got out one of my books, just to confirm how influential the movie has been and then, I thought to myself that I really needed to see more films, learn more, broaden my horizons. I got excited. I thought of all the things I have waiting for me; the AFI Top 100, somethings known as ‘books’, cinema membership et al.

And then I remembered… Life is way harsh. My wishes and my plans are not possible. Not right now. As sleep drew in last night, I really couldn’t handle this truth. One night of stimulus reminded me that I cannot experience it as frequently as I once did. My drugs forbid it. Such enjoyment is now sporadic and has to be done with company, as extra encouragement for my brain and me. Nobody tells you about this when you get cancer. I guess, people are more worried about the life and death story arc.

Every time though, when it happens, when I get to see something for the first time, I must say, it gets me at hello. It’s a spectacle. A bittersweet spectacle, but a spectacle all the same.

Here’s hoping that this tenth month long side effect is only temporary, after all, tomorrow is another day.

I’ll be back.

Hopefully. I need a sequel.

EJB x

Oh, and in case you were wondering, I am going to need a bigger boat.

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The Wire Haired Fox Terrier

My hair is growing back. It’s a true story. I was told it would and what do you know, it is.

I was also told that it would come back wonderfully soft, like babies hair. This is not happening. No. Perhaps the reason for this is because I failed to lose all of my hair, or perhaps it is because I am genetically cursed to have hair so coarse that it resembles the coat of a wired head fox terrier. That’s right, I am walking around with a dark shade of brown head of animal hair on my head. No amount of conditioner can hide the fact that I have a thickening rug of short and curlies visible for all the world to see. My long hair hid the fact that my hair has the consistency of straw, but now it is short, there is nowhere to hide. There is also, nowhere to hide my grey hairs. Apparently, I have more than I thought I had, though, I suspect my eyes are lying to me on this subject.

It is fortunate that I do not have a significant other, because if I did, they’d obviously had the constant desire to touch me, and if they ever accidentally stroked my head, the wire carpet would cut their hand. So… Small mercies, lads.

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Pubes with Headphones

Thanks Mum. Thanks Dad.

Oh well, it’ll all come out again soon. It’s a shame then, that I currently require a hair cut. The bits at the back are bending and I really do not have a clue what to do about it. Ah, the stress. Ah, the vanity.

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How Not To Greet A Myeloma Patient – Part II

I feel for the people in My Network. I suspect, though I am not entirely sure of it, that with regards to me, they have to reach and maintain the delicate balance of treating me like normal, as the person they have always known whilst acknowledging that I do have an illness that is shitter than shit and for this reason, I do need the occasional TLC because I can be emotional and sensitive. Emotional and sensitive. Believe it sisters. I wish I was neither, but hey ho, life is not that kind. If I am honest, I do not know what the right balance is, so deity help The Network.

With some people it’s easy; it’s a given. Housemate for example, could tell me that I look like a sack of potatoes and smell like farts, and I’d still wash his pants. For others, I think it is more difficult, but after ten months, I think we are working through it and I am comfortable with the way things are. Bar the occasional bout of paranoia, anxiety and self loathing, but this existed long before I contracted this deadly disease. These people have seen me multiple times since I was diagnosed and have a good working knowledge of My Myeloma and what it and the changes mean, and I am most thankful to them for that. It doesn’t take a genius to work out that a knowledge of the cancer and my treatment, would assist people with knowing how to manage my mood and what I need on any given day.

For people who I do not see regularly and who do not know a great deal about myeloma, perhaps even, how to spell it, it is more difficult. I do not know how I would be if the situation was reversed. By ‘being’ what I mean, is I do not know how I would show that I care about somebody if they were 29 and had myeloma. It too is a delicate balance.

For me personally, there are certain things that I hate when it comes to me coming face to face with another human being, who I knew once upon a time. Loathe it actually, to the point where if I can predict it coming, I will not go. It is an inevitability that on seeing somebody who I have not seen for a while, My Myeloma is going to monopolise the conversation. It will now, forever be, that way, and there is not a great deal to be done about it. People care about me, I assume so anyway, and want to know how I am, yadda, yadda, yadda, blah, blah, blah. Blah. It is nice that they do obviously, but like I said, there are certain things, in regards to this, that I hate more than I hate cherries and I hate cherries.

Firstly, if you approach me and tilt you head to the side, I am automatically going to think ill of you. If the head tilt is accompanied by a frown and/or something that resembles a sympathetic noise, you would have lost me for the rest of the conversation. I have witnessed this on many occasions since I was diagnosed. At the start, I could stomach it, but now, ten months on, I cannot. Yes I have myeloma, and yes, I have a shortened life span, but, I do not want to see that in people’s faces when they talk to me. There is a difference between sympathy and pity, and the head tilters fall into the latter category and that is just not healthy for me nor for them. It’s a look, which makes me feel like a dead woman walking. Every time. I hate to point out the obvious, but this makes me sad. It makes maudlin thoughts set up camp in my head.

What follows, in this particularly scenario is the ‘how are you?’ A simple, caring question to be sure, but again, if during my whole response to said question, if the person continues to look like they have one ear heavier than the other, I am going to get frustrated. The frustration grows if their concerned demeanour switches to confusion. A week or so ago, I happened to find myself in the situation where I was confronted with several people who had too much wax in their ears. I am no stranger to the roadshow, but around every corner was a head tilter intent on talking to me like I have had a lobotomy. This brings me on to the second thing I loathe. They would not leave me alone, nor drop the subject of myeloma.

Myeloma, myeloma, myeloma, myeloma, myeloma. Bloody myeloma.

Way back when, many moons ago, I said that I did not want My Myeloma to define me. At the time, I was referring to me and my personality, my being. I did not consider what other people’s perception of me would be, and whether in their mind, I was going to be become my illness. I have been thinking about this for a fortnight, and unfortunately, for the people who would not take my standard briefing about my illness and demanded more, in their eyes, I am no longer just Emma. I am Emma with myeloma. I could basically be myeloma. Correction, I could be cancer, for myeloma may be too specific.

I have spent months trying to perfect the polite response to the ‘how are you?’ and then move to subject on.* I even practice it at home. Two weeks ago however, I learned that in some cases, this was not sufficient. When I responded saying I was fine, people doubted the sincerity of my reply and said, ‘no really, how are you?’, whilst looking at me like I was having a nose bleed. My internal monologue’s response to this was straightforward, it simply said ‘I do not want or need a counselling session, go away (or something um, similar).’ What actually came out of my mouth was ‘I’m fine, I manage and I cannot ask for more.’

The point I am trying to make, and I am using a lot of words to make it, is that the inquisitive head tilters make me feel like I am dying. Not only do they make me feel like I am dying, but they make me feel like I am a child dying only after my personality and 29 years of life have been brutally murdered, buried, eaten by maggots and forgotten. And all the time I feel this way, I look back at them smiling, because I do not want to appear rude or weak. I freely acknowledge that myeloma has made me boring, and it stops me from doing what I want to do 80% of the time, but it has not become all of me. Not yet. I have more to offer than My Myeloma, for I am not and should not be defined by it. Some people, just did not get this message.

In all honesty, I would be upset if somebody did not acknowledge ‘the situation’, but there must be a better way than making me feel like I am less than I am. There is a better way, I just cannot quite put my finger on defining it, but it does exist. If it did not exist, I would go about this earth irritated by everybody and everything, when in reality, there are only a handful of people who have made me feel like the end is nigh. The best meetings I find now, are the ones in which I do not think about them afterwards.

Talk to me about My Myeloma by any means, but be aware, there is more to offer. Maybe, and this is just a suggestion, we could talk about you? Just for a little bit.

My name is Emma Jane Jones and I am an ungrateful monster. With myeloma.

EJB x

* There are still several occasions in which I find the need to talk about my illness and I do. Like a said, a delicate balance.

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How Not To Greet A Myeloma Patient – Part I

I can hold a grudge. It’s my one weakness. I can really hold a grudge. Sometimes, in fact, most of the time, the grudge is built up in my head and becomes far worse than the incident itself. On occasion, years down the line, I may admit that I was wrong, but this would probably just be to myself.

With that in mind, I think I need to get something off my chest. If only the elimination of pain was that easy, for as I type, my chest area is sore. Not as sore as my neck though. Oh no, my poor neck, which as people know is connected to the spine. Or is it part of the spine? To the non medically trained person, I have a sore neck, but based on my previous scans, the pain is coming from the spine. Do not hold a grudge against me for that… Until August of last year, I had no reason to know what a C4 was. I know now.

Since that sunny day in August, there is one thing that I have been particularly sensitive about with regards to my body. Sensitive and all so very paranoid. The paranoia associated with my spine and the potential damage that could occur makes post alcohol anxiety look like a meadow on a sunny day. The knowledge that I am walking around with multiple lytic lesions in my spine (and elsewhere), dictates an awful lot of my actions and thus physical limitations. In the autumn, when we were still establishing my pain management, there was a rule, a simple rule which suited my tactile demeanour, and that rule was ‘do not touch me’. It then became ‘do not hug me’. This one was particularly important after a big strong man hugged me in my office, which led to me having to pop a few diazepams and going home. Overtime, as I have become more mobile, these rules have been forgotten and I am more than happy for people around me to just be gentle.

I do not think it is difficult to remember the importance of being gentle. I believe that when people think of me it should be right up there in their thoughts along with how I am the greatest person to have ever walked the planet. I have made no secret of the fact that it is important to be gentle. I did fracture a vertebrae on the bus and a rib reaching for a bottle of water after all. I am brittle. I take it for granted that the people in my network know that and conduct themselves accordingly. I do not take it for granted with members of the general public and for that, I have my beloved walking stick. My friend Katy has developed a new way to greet me using our pinky fingers. A secret handshake if you will. This is thoughtful and appreciated, and evidently, really, really cool.

What is not appreciated and what is quite clearly not the way to greet somebody with myeloma, is somebody coming up to me and grabbing my neck so tightly and yanking it down, that I cry out in pain. For the first time in a long time, in that instant, if I were not attempting to be a lady and you know, in a great deal of pain, I would have punched the perpetrator in the face. Actually in the face and I am sure that the pain from that would be nothing compared to the pain they caused to me nor the paranoia that decided to spring up in its aftermath.

The lesion in my neck (top of my spine), causes me the most worry and currently the most annoyance. I can give myself a blinding headache if I lean a little bit to the left for goodness sake. So, after my neck was unceremoniously shaken by an ignoramus, I instantly had shooting pains up and down my spine and arms. I then spent two days not being able to move a great deal. Happily this coincided with my steroid crash, so I was in bed anyway, but still, I am holding a grudge. I thought the pain had gone, but as I spent six days in bed, it was difficult to fully assess the damage. Now however, having spent three days not entirely in my bed, I can say that I am still suffering. I am still suffering 10 days after the fact. It is a familiar pain and it is a combination of stiffness and the constant sensation of a trapped nerve in my neck affecting the strength in my arms, specifically, though not solely, my right arm. Brilliant. Thanks.

I mentioned my paranoia, and because of this, I have no idea how much of my pain is perceived or actual. I wish I had not been put in this position where I have to doubt myself. The mental torment is enough for me to warrant saying nasty things behind somebody’s back, without the fact that a simple, thoughtless, drunken act, could cause actual long term damage to my skeleton. Let’s emphasise this. Long term serious damage to my skeleton.

At the moment, regarding my injury, I am going to wait to see whether the pain subsides. As for the act and the perpetrator of it, my grudge is building. I don’t ask for a lot (others may beg to differ), but I do ask that people are considerate to my weak body. I would rather that, then people who have not seen me for a whole deciding that I need a one on one counselling session complete with sympathetic noises.

So, My name is Emma Jane Jones and if you do not want me to think that you are the devil’s mistress, don’t touch me.

More generally, if you know somebody has myeloma, to be on the safe side, do not, absolutely do not, tug on their neck. That advice will take you places. I am sure of it.

EJB x

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Side Effects

I’m alive. I’m alive. I’m alive.

Hello there. I would like to say that the reason I have not written a blog for so long is because I am so well that there is simply no need for me to off load my thoughts into the ether to prevent me from having a psychological breakdown, but alas, that would be a lie. And I am all about the truth. The truth is simple. I have been too tired. Tiredness sounds like a weak excuse, but it is not. I have been experiencing a tiredness that is so overpowering, I can spend a good two hours staring into space before I have realised that this is not a good use of my time and then when I do realise, there is not a damn thing I can do about it.

To be absolutely clear, this tiredness is quite different to a steroid crash. I do not feel ill when I am tired, which is a bonus. Unfortunately, whilst I do not feel sick, the tiredness just creeps in and completely takes over every other part of my being, so that the only thing I am capable of doing is lying down by myself with nothing but blankness from my brain for company. My TV may be on, but I am not watching it. I may even be able to produce some words to Housemate, like, “night”, but essentially, I feel like my brain has shut down. Blankness is the best way to describe it. If you could see me, and I could gesture to show what it is like, I would produce a confused look on my face, with my mouth open and make a constant dull moan. Let us add a metaphorical ringing in my ears, for luck. I see it as a form of stupor. At times, I worry that I am catatonic. The tiredness by the way, to ensure that we are all on the same page, is not about sleeping or my need for more sleep. I find that sleep and tiredness do not necessarily go together like a horse and carriage. Is this enough? Is the incapability explained?

As my last treatment cycle drew to a close, which by the way, was last week, it became increasingly clear to me that the tiredness was getting worse and thus my ability to do normal things was reducing. I found myself longing for my steroid crash (a ridiculous notion), because it would allow me to spend time in bed. I do not think others would judge me for spending more time in bed, but I would judge myself. I have said previously and it is my desire, that I want to live as normal a life as possible. During my cycles, after the crash, I try to do this, I try to be normal. I make plans, I go to work, I see people or at least I try to see people and at the start of VDT/VTD this was fine. I could achieve everything I wanted to achieve. Now? I cannot achieve or do everything I want to achieve with my time. By the time I get into my bed, which is key blog writing time, everything has been spent. I am done and the ringing commences. My body is in the middle of a war with my brain and the body is winning. I am essentially stuck in a stinking, dirty trench.

I believe an example would help hammer home my point. Two weeks ago, I had a day where I had three things planned. Treatment, a trip to Tunbidge Wells and then a show in the evening; I was very much looking forward to the latter. By the time I had completed the first two, my body was so exhausted and I felt so incapable of doing anything, I cried. I cried on my bed like a big old baby because I could not see how it would be humanly possible for me to get my body out of my flat, on a bus to the Southbank and back. The thought of it made me panic. Panic because I did not know whether I could last another four hours, and if I couldn’t, predicting when my body was going to breakdown. Was it going to breakdown at the theatre, were my friends going to see? Were they going to realise that there are times when I cannot make conversation because my brain shuts down or are they just going to think I am a rude self indulgent bitch incapable of holding a conversation? Which option is better? Breaking down at the theatre was my preferred option to doing in on the bus, because at least then, I could hop in a taxi home. But what if it happened on the bus? That 30 minute journey would be excruciating and then, would I even have the energy to walk home when I reached my stop? Then I panicked because I did not want to fail. I wanted to go out and defeat was not an option, well, it was, but I believe if I had allowed my brain to lose, I would have spiralled into a pit of depression. In the end, I went, I ate some food and that gave me some energy for four hours, but it was a struggle. I subsequently spent much of the next day in bed. Well, until the evening when I went on a hen do.

That was the day I realised that the tiredness was not run of the mill and I was officially drowning in it.

The wicked truth is that I have been taking thalidomide every day for the last 91 days without a break, and it is taking it’s toll of my body. The Medically Trained People told me to expect my side effects to worsen as I got deeper into my treatment, and my, were they correct. The main side effect for me, is not the neuropathy, it’s the fatigue. I have three weeks left of this treatment and I know that I am not going to be capable of having multiple plans in a day. At the moment, if I do have multiple plans, I worry about when I can squeeze in rest and if I cannot, whether I am going to be able to do it. Everything in Myelomaville is a balancing act, and unfortunately for me, I am just going to have to give more weight to my bed. Perhaps I need to conduct my life solely from my flat again, because I am finding that even a solitary plan can be exhausting. Knowing that I have to walk from a to b, or get somewhere, or speak to people, makes me tired before I have even done anything. Again, sadly, I find, this means that I see less people because I cannot make the effort to be sociable. It can be lonely. It is also frustrating.

I had planned to write this blog eight days ago, but My Myeloma had other plans. To be more specific, my side effects had other plans. I am just coming out from my monthly steroid crash, which last week proved to be the worst yet. I can say, hands down, that I have felt the worst I have felt since the autumn. Maybe since I was in hospital. The side effects will get worse as you go through your treatment. It’s been a delight. I do not want to dwell on it, but in short, I had to stay at Mamma Jones’ house because I was incapable of looking after myself. I even tried to postpone my treatment, but I had no luck there. As many people know, I am glass half full, so I just saw it as training for my transplant. I definitely did not cry a lot.

Here is an aside for you. I realised that a sign that things were improving was when I put a bra on. The support meant that I was planning to not spend the entire day horizontally. Also, wearing something that did not have an elastic acted waist. Needless to say, at its worst, I looked H.O.T. Hot.

So, there it is. The reason I have not been blogging or maintaining as much contact as I would like. Tiredness. It really is not fair. It sucks all the funny out of my mind and I am not used to that. I need to laugh.

As with everything, I am just going to plough on through and hope that I can get to the end of this cycle in one piece, without plunging into a cesspit of depression. In order to ensure that the latter does not happen, I will keep blogging. Self preservation and all that. Plus, some really exciting shit is about to happen.

EJB x

P.S. I thank you for your concern. It warmed my womb.

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