Tag Archives: Chemo brain

N.B.

On the days when I feel like there is an improvement in my mental capability, I remember that my mobile phone device is full of  blogging material of questionable quality. It’s a responsibility, for I then feel tied down to telling what a lesser person would deem an uninteresting story, whilst simultaneously knowing that I personally, will feel instantly better for sharing and recording, in a way that can never be taken back, whatever the particular shit myeloma has thrown at me during x amount of time between blogs. 

As the earth has continued to rotate, I gave at least managed to hide the evidence of what could form a blog in my iCloud account instead. I guess today is one such day, I have some sort of energy, except, I started writing this blog about ten hours ago and so far, it looks absolutely nothing like I anticipated it would when I started morning. I am fairly certain for example what this will be the only time I mention NHS meals.

Of late, My Myeloma stories are overflowing in my virtual world and my actual mind, and not on my blog. Few people know just how many days I have spent sleeping in a room occupied by strangers or how many times I have been put to bed. There are times I am so confused by it all, that the easiest thing to do to manage it, is to fall asleep and forget it ever happened. I am not even sure what my reality is 100% of the time. I would have no clue at all if I didn’t attempt at least to try to maintain a record. I need a record of this. I want a record of the times I fell asleep mid sentence, or when I canceled plans with my friends and I cried myself to sleep because I saw no end in sight. Hell, I even want a record of my most recent and nightly nightmares. 

Right now, I’m experiencing something new almost daily, and yet I’m not fully documenting it, as I had once documented before, because the something belonging to my sister that entered my body three weeks ago or so (see I do not even know the day) seems to be killing off all my two autos later, surviving, brain cells. 

I have had four weeks of treatment,and of course we are running very close to a certain three year anniversary, so there are no shortages of tales to tell.  I want to tell them but it’s getting close to medication time.

Almost everything I have experienced since my allo commenced is ‘blog newsworthy’ (people write blogs about Stephanie Meyer’s arm hair right?), I just haven’t quite worked out where the energy is to tell you about it. Know I plan to, it might just come later than I actually experienced it.

I used to think that a late blog would be something of a disservice. If a blog was written out of anger for example, like the half written one I found the other morning, time gives me the ability to calm down, to compose myself, and omit the need to rebuild any of those metaphorical bridges that might have been damaged mid rant. On the downside, by waiting, it takes away that raw emotion, the raw emotion heightened by my inability to eat raw foods, and I feel a little bit like I am making things sound easier than they are. I feel like it makes me sound more composed than I am, when I am really not. Not only that, less blogs I dramatically reduces my site’s statistics and my ego likes the notifications. 

If there is one thing I have experienced a lot of since I started frequenting St Bartholomew’s Hospital everyday, it is raw uncensored emotion. Perhaps the fact I am too tired to blog is stopping me from writing something I would regret at a later date. It’s not a lie, it’s just presented a different way. That is what I keep telling myself when I look at my ever growing list of half finished drafts.

I cannot give you any specific examples, for that would really negate the need of this temporary notate bene. Hypothetically, however, I might have written something negative, something along the lines of;

There is still time to jinx this procedure by talking about it now and I most definitely, most adamantly, most whole-life-depends-on-it-do-not-want-to-jinx-this. But and that is a start a sentence with a capital ‘B, But, I do not like Saint Bartholomew’s Hospital. 

And then the hypothetical thought better of it… Like I said, I did not write that down, those thoughts are imagined. If somebody did hypothetically wake up one morning and write that down before they even got up to go to the toilet, I am sure they had good reason for doing so and it wasn’t because she felt the nursing assistance was slightly rude that morning… Hypothetically. Similarly, so too, could something like this have been said, despite me never actually joining any of these words together to make a cohesive sentence;

Every time I have experienced Red Thumping Rage over the last 17 days, I have felt like a teenage brat in great need of a reality check, a slap round the face, a smidgen of gratitude and a slow play replay of the NHS part of the 2012 Olympics opening ceremony.

I could even have imagined images of clutter or me sleeping. Maybe, like I said. I do not know. The negative portrayal of a scientific marvel does not sound like me. 

  
  

I love everything remember? I think my care is great. I love talking about myeloma and myself, and I cannot wait for the time when I have the effort to do it properly, with a proofread. Until that point comes back, we get what we get. 

It’s much like the unpredictable bowel.

EJB x

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Frozen Assets

Chemotherapy makes one absented minded. It makes one forgetful. It’s makes my mind a muddle. A big puddle of a muddle in fact.

Never has there been a better example of the giant dirty puddle that is my mind, than my very recent attempt to fill out a blood form for my weekly full blood count. I’m trusted with that sort of power you see, because I am intelligent. I don’t need nurses to use their precocious minutes doing that. Well, today my nurse and I might have been proven wrong on that front. A mere 30 minutes ago, I discovered down in the blood bank that instead of providing my name, hospital number and date of birth, I gave the phlebotomists my name, bank account number and sort code. I repeat, my name, bank account number and sort code.

In my defence, the form filling did come immediately after I been enquiring about a Macmillan Grant. The chat had to cover my dire financial situation, so I did have money, or my lack there of on my mind when I gave a complete stranger my bank account details. So much for security.

It now makes me wonder who else I am giving protected details to without realising. Many a thing does seem to go above my head at the moment. Fortunately for me, I have no funds for any likely thieves to steal. Maybe that is why I have no funds. My main possessions these days currently live in my freezer and that is not a pun. It is food.

EJB x

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Mashed

Hello there and welcome to Part I of, let’s say, two blogs about my brain function. I assume it’ll be in two parts; I have not written them yet.

The first post will be something of a downer as I describe what it is like to exist with constant Chemo Brain. As a romcom sort of girl however, I intend to pick things back up in Part II with an inspirational story of how I manage to fine some respite from my brain’s drug induced default position of blurry shapes.

So, back to the downer that is Part I…

I need to be clear about something that is commonly misunderstood. Fatigue as I know it now, is not just limited to tiredness. Of course tiredness is a big part of it, but there is so much more to it. So much more that is hidden from your view.

Essentially, my brain is straining and I know it is straining. In the last two months, as my fatigue has increased, so too has my inability to concentrate, think, remember and reason. Don’t get me wrong, I am not sitting at home all day long unable to tie my shoe laces. That’s a bad example, for I actually cannot do up my show laces, but that is not because I do not know how, it’s because my back forbids it. My recent days and weeks mostly blur into one big lump, where time passes quickly, with a noticeable lack of cognitive brain function and imagination. My time passes quickly and yet I do not know how, nor can I recall any use of something I once knew as ‘imagination’. I miss it.

This blog is a good example of my inability to think. When this all started, as much as I noticed that the drugs were frying my brain, I could still form sentences that did not always include ‘of course’, ‘so’ and ‘obviously’. Writing was easy. It’s not easy for me now. I like to think that I am rather witty, but realistically, after a glance through my most recent posts, my wit may well be in my past.

Believing something is better than nothing, I will continue to stick to the same old vocabulary to keep people abreast of My Myeloma developments, even though I know the content is becoming dryer than my skin post radiotherapy. I sit down to write a blog and more often than not, a blankness takes over and what I want to say cannot be said because the words just bounces around my head. If I can overcome that particular hurdle, I then find that the act of writing things down, something that remains important to my overall wellbeing, uses up my daily thought allowance. I blame this for my current, simmering level of madness. That is my story and I am sticking to it.

Waking up one day and realising that your ability to communicate is not what it once was, is not something to relish nor welcome.

After some thought, I still view my treatment as a means to an end, but the truth is, my treatment comes at a big cost that few people recognise and I can quantify. All I know for certain is that I cannot help my boringness, I plead with thee.

I watched a film last weekend, I will not tell you the name of it because I am about to give away a big part of the plot. One of the characters is accused of running somebody over with his car and his defence is that he cannot remember doing it. Why you wonder? The answer is Chemo Brain. An actor playing a doctor actually says ‘Chemo Brain’. Now, I have no intention of running somebody over in a car, I cannot look at my blind spot anyway, but it made me think, slowly, about the losses I have had to deal with on my current treatment… I do not think that the plot development I mentioned is implausible.

I am backing this blog up with examples, silly examples maybe, but examples all the same, so that you do not think I am exaggerating or feeling overly maudlin. When I say that my days blur into one, and that I have a limited concept of time, that is not an exaggeration. Big Sister told me off a few days ago because I had not spoken to her for a week. If somebody had asked me about this prior to our conversation, I would have said that the last time we spoke was a mere few days before the question came ‘where have you been?’. The answer of course to that question was ‘I don’t know’.

Last Monday, I attended a two hour lecture on the Freudian concepts of Eros and Thanatos in modern cinema. Cultural for sure. The following day, I knew that Thanatos meant death, but I could not remember the word. I had to look it up five times before it stuck and by Wednesday I had forgotten the word again. Right now, if I think really hard, I can remember the titles of three of the six films discussed.

I used to have a good short term memory. Past tense. My brain now seems to be built for one man shows because I cannot remember multiple names in one go. A few weeks ago I watched a film in the afternoon and come 20:00hrs, I had no recollection of what the film was. In my defence, the film was terrible.

If modern technology did not exist, if I did not walk around with constant access to Google in my pocket, I would be a word beginning with ‘f’ and ending in ‘d’. I am constantly making notes and scrolling through my messages to see what I have said to the various people in my life. I live in a constant state of fear that all my conversations are the same and people are just too polite to tell me that we have already spoken about what it is we are speaking about the last time we spoke.

There is an obvious side effect to the side effect of which I speak. It’s called monotony. Do you know what monotony does? It makes a person boring. Dare I say it, it makes a person tedious. My worry? It has made me tedious. Of course, nobody will say that I am a god awful bore, at least not to my face, but they can and will think it. My phone records would probably back this up.

A month ago a friend of mine told me off for asking so many questions in conversation. It plagued me for a week or so, until I realised that it is something I do now to firstly enable me to actively participate in a conversation. Secondly, having thought about and asked a question, I am more likely to remember the answer. It is a far from ideal way of engaging.

It has, in my brief myeloma voyage, never been as severe for such a long period of time. Reading has been a constant difficultly and the chances of following the plot of Game of Thrones were significantly reduced the first day I took morphine, but there is so much more to it now. I want to be able to articulate myself. I want to remember to reply to messages and phone calls. To allow the former, I would be greatly assisted in knowing how long a day is. And finally, I would very much enjoy recalling information mid conversation without feeling the need for a celebratory fist pump.

As Part I draws to a close and on the eve of two transplants, my main questions are, how much worse can it get and how many people will still be around at the end of it?

EJB x

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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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And So It Continues…

I am trying not to be one to complain but can this phase be over now please? I am not sure how many hours I have spent in bed since Thursday night, but I know it is more than is deemed socially acceptable and I have cancer.

Yesterday, I was out of bed for a whole three hours, big deal. Actually, at this current moment, it is a big deal as I have spent much of the last 72 hours with a sensation of balls tumbling around my head, invading my personal space whilst a plank of wood is inserted in my spine.

I am a perfect picture of weakness. There are no movie marathons happening here. Chemo brain really does exist. How? I hear you ask. Well, I say, I currently do not have the brain capacity to process what is happening on The X Factor and I like to think that there is usually some spare capacity within my brain to write a thesis or three whilst I am indulging in the nation’s second favourite reality TV show.

This is dead time. It no longer exists and there is absolutely nothing I can do to get it back or prevent losing another four days in three weeks time. Smiley Face. Every time I get up, I just have to get right back in again.

Just. A. Few. Hours. More… Maybe.

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