Monthly Archives: February 2015

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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Hofmann’s

There are a few things I miss about the 7’s. I miss engaging my brain. I miss that most of all, almost everyday, but I have found a way of thinking about it in the abstract. Your job is elsewhere. Watching Inspector Morse is a job. When I worked the 9-5, I might not have looked like Dolly Parton, but I like to think I was pretty good at it. When I doubted that, I had my annual review, which did nothing to curb my ego. Unfortunately, engaging my brain in that format is not an option for me right now, it has not been an option for me since I relapsed. It’s taken more than not getting dressed at 07:00hrs to get used to it. It takes a lot to not feel useless.

I have had to retrain my brain. My priorities have changed. When I was a teenager, I worked for a water sports park and I loved it. My loyalty to that place by the railway line became a running joke amongst my friends. It was my love. I then got a ‘grown up’ job and I loved that even more than my job before and my loyalty passed on. Anybody who has read this blog from the start, would know how much I loved my job. I saw my place and I felt supported in it. Said job did not account for all of me, but it was my contracted 37 hours a week, and everything else that went with it, and I was quite happy with that. More than happy. It led me to discover the Growler. Then something happened to curtail all of that. It’s called a relapse. Everything that I did before June 2014 on this subject and the loyalty I felt, now, feels misplaced. Blood cancer is chronic. Chronic gets boring.

My major form of daily engagement halted, indefinitely, and so too, with my current treatment, did a reasonable expectation to return to that daily or temporarily regular engagement. Realising this sad fact, meant that I have had to turn off my senses that would be attracted to certain things in the news. My news now seems to be limited to the Daily Mail’s gossip column and Sight and Sound magazine. For a long time, at least it feels that way, I have not thought about my employment in any way other than what the financial implications of not doing it has on me, or with the anger associated with me not being able to do it .

Since the relapse, that work community I thought I had created or become apart of in my adult life seems to have all but evaporated. It’s rather difficult to think that the world that formed at least 56% of my waking hours prior to my diagnosis and the one I worked so hard to hold on to has paused, but that is the truth of it. That percentage is a crude minimum by the way, created after discovering the calculator on my iPhone. I thought about it much more than that.

Last week, I found myself driving past somewhere, that brought back fond memories and the familiar stories of sitting in a hotel bar finding out far too much about a person who gave far too much away. In turn, I was reminded about other things. Even my language. I doubt I’ll be released from hospital now.

I mo longer walk the 7’s. I no longer get to experience the benefits of working on the 7’s, which ultimately means cruising by the local pub on my way home. I no longer get the 07:35 to Wakefield. I no longer have colleagues. That’s 37 contracted hours a week gone, along with all the benefits of those hours.

It might be one of the hardest adjustments I have had to make… I’m not responsible for anything other than myself anymore.

When all faith is gone, there are days when people come and claw back some of my faith in humanity. Humanity is better than an organisation. It doesn’t take up the 37 of my hours, but it gives me hope that I may see some incarnation of that 37 hours again. Whether it is the in the form of a grandmother from the West Midlands who buys me sherbet and shows she cares above and beyond what she is supposed to do, a troupe of people hitting the Railway Tavern, a couple of people who shout ‘UTB’, a man who reads the Guardian Culture section and sends me the articles because he thinks I would like them or somebody who still plays Word With Friends with me almost everyday, and they do so without needing anything in return. These people make me think a return is possible or at least, they make me think I left my own little positive imprint before Myeloma hit. At a minimum, they do not make me think like I wasted the best of my adult years, which is how I have felt many a time during this long winter. They make me think the person who hired me was not a fool, and I am pretty sure she isn’t.

When all else fails, when the negativity takes over and you think you have faded into xxx history, one gets a special delivery from Wakefield. Not just any delivery, but one from the special place called Hoffman’s. A pork pie and a packet of pork scratchings. How I missed this.

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It doesn’t heal all wounds, but it most definitely fills a hole. A big gaping hole.

EJB x

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Something Old and Something New

And now to interrupt your regularly scheduled programming to bring you breaking news. Not breaking news exactly, but news of a hospital new. Not a new hospital built in the 20th century exactly, but a hospital that is new to me.* According to my friends at Wikipedia, the hospital in question was founded in 1123. For the reason I was there, thank goodness technology has progressed since then.

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Exhibit A: A building not built on 1123.

Yesterday was Wednesday 11 February and yesterday I have travelled Eastward to the place they call the City, just a stone’s throw away from the place where a lady once fed some birds, to the hospital called St. Bartholomew’s. If you are not familiar with the place, Benedict Cumberbatch seemingly jumped off the hospital’s roof in 2012.

I have been referred to St Bart’s (we’re on a first name basis now), ahead of my proposed allograft transplant. I have known for sometime now that an allograft at the place where everybody knows my name was not going to happen. I had hoped I could get transplant number 1 out of the way before I was sent to meet a new team of Medically Trained People. I like to compartmentalise, but having had to wait for two hours packed tight in a tin of elderly sardines yesterday morning, it is probably beneficial that I got it out of the way, whilst I still have hair to have pulled out in frustration.

I heart the NHS and I understand the why patients need to wait. In the cancer business, my previous sentence is called a disclaimer because I am about to bad mouth the NHS. Not all of the NHS exactly, but specifically the St Bart’s waiting areas and their waiting times. I must be rather spoilt at the Macmillan Cancer Centre, because I found two hours of the waiting too, too much as evidenced by Exhibit B.

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Exhibit B: A chair with no view

You cannot see because Mamma Jones failed to photograph what she was asked to photograph, but there were not enough seats for the amount of humans on the floor. Nor was there sufficient room for people with walking sticks to safely navigate their way around the chairs. Nor were the seats sufficiently space apart to allow any form of privacy. My biggest bugbear? Very comfortable chairs. I believe at one point I described the waiting area on the first floor of the West Wing as ‘oppressive’. I am allowed to make sweeping statements like that because I have a really bad type of cancer.

Despite my first impressions of the hospital being damaged by the aged crowds and the customary, bright coloured walls designed to bring much cheer to those affected with cancer (exhibit C), the Medically Trained People were exactly how I like my Medically Trained People to be. The people redeemed the space.

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Exhibit C

The main doctor, Mamma Jones and I spent a good hour with, was informative and spoke to me in my sort of language. I almost understood what is going to happen to me. The head of the clinic, who popped his head round the door greeted me with ‘are you who I think you are?’… Well, personally, I just love that sort of notoriety. He had me at ‘you’.

Once that appointment was complete, I was sent across to another building, in the maze that is the hospital. The building had a meagre seven floors to UCH’s 17, but that did not prevent it from having a nice view when I was finally taken through to a treatment room. I say finally, for I had to part take in a little bit more waiting in another busy and cramped waiting area. In the small treatment room, I met another Medically Trained Person who have me reading material and in return, I gave her a cup of my pee. I then went on to give somebody else six vials of my blood on the ground floor. I failed to win the phlebotomist over in our five minutes with my wit. Unfortunate.

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Exhibit D – A Room With A View

All in, my trip to the City took six hours of my life away. I will say that the two hours of medical interaction was worth all the sitting staring into space and listening to other people complain. I’m allowed to complain, but anybody else who does so is just ungrateful… Anyway, in conclusion at some point in my future St Bart’s is going to be my hospital for around 100 days. Let’s say approximately 114 days based on the collection of papers resting in my hallway. I’m going to have to get used to the waiting and I’m going to have to get used to the seats, because I have a sneaky suspicion the Medically Trained People I saw know what they were talking about.

EJB x

* Apart from the time I went to the sexual health clinic because I thought that that was a thing grown ups should do.

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Crashed

I may have said in my previous blog that I was going to write two blogs about my brain function, but I have since decided that that would be a disservice. We all need another sorry tale about how hard my life is, before I can show you that I am the bravest person I know, who was born in the 24 May 1984. The logic behind my decision is sound, if I do say so myself. Part I took on one aspect of my fatigue. To truly understand it and for me to document how I am currently spending my days, no story about my life would be fully complete if I did not mention the overriding power of my day-to-day exhaustion.

Exhaustion, which is a daily occurrence. Exhaustion, which is both predictable and unpredictable in how it manages to drag me down to my sofa or my bed. Exhaustion, which on a good day, gives me approximately four hours of energy on a good day. Exhaustion, which if I happen to go over my daily allowance of energy, finds a way to quickly come and bite me on my wobbly bum.

I have said it before, but it is worth reiterating it, fatigue is not the same as requiring sleep. When it comes to this fatigue, I will take exhaustion without sleep, over decreased brain function any day. I’d rather not experience either, but I am trying desperately hard not to feel sorry for myself, and thus acceptance of these facts as I describe them to you, is crucial.

My current treatment consists of Revlimid tablets everyday for three weeks with one week off, accompanied by weekly doses of Dexamethasone and Velcade. To save you reaching for the Google, Dex equals steroids and Velcade equals bleach. It was the reintroduction of Velcade to my body in December, that sent my brain into it’s current downward spiral.

I cannot dress it up and I cannot lie. I am constantly tired. Is this enough clarity for you or do I need to go on for another 11 paragraphs describing what fatigue is like to hammer my point home? I think we know the answer to that one.

I’m really into examples at the moment and last weekend, I can provide you with a rather mundane one. I fell asleep at Mamma Jones’ dining table after I had conducted the most exciting of activities, which included a shower, decanting two tins of baked beans into a saucepan and eating my lunch. I had been out of my bed for a total of three hours. Three whole hours.

Spectators of my life, may believe that giving in to my fatigue on almost a daily basis may exasperate said fatigue. I have heard it many a time. Somebody will kindly advise me to go out, believing that it will make me feel less tired. It is a tactic that I have tried and tested, time and time again, each time willing for a different result. I can conclude, by shouting it from the rooftops, that my fatigue does not work that way. If I am tired, I am tired and nothing is going to change the feeling of complete and utter lethargy.

I am fortunate that there continues to be somebody in my life to tell me that it is okay for me to be tired. I especially need this provision in London. On occasion, he still needs to tell me that I cannot go out when my will is in deep battle over my body. A few weeks ago, I had planned a lovely Saturday of brunch and the cinema followed by an evening out. Having completed the first two activities, totalling five hours of activity, I knew the minute I walked through my front door that I would not be leaving my flat again that day. In fact, I did not leave my flat until two days after that. Missing an opportunity to socialise never gets any easier, let me assure you, and my frustration in the days that followed that Sunday was palpable.

On a much smaller scale, there are moments in my day when I feel so exhausted that picking up a glass of water is a chore. On my bad days, I might not even pick up that glass of water. The are a whole host of other daily activities where my execution of them is hindered by the feeling of nothingness, that I rarely seem to be able to escape from.

I know that this side effect makes me unpredictable and to many people, it makes me unreliable. Most of all, just with my decreasing brain function, it makes me boring. Many a night I wake up worrying that my flakiness, is perceived as just that, cancellation on a whim. Laziness. Selfishness. Indifference.

Haemo Dad was conservatively labelled a ‘fool’ last weekend because he told me that sometimes, I need to be seen to be making an effort with people. He is not the only person to say something like that to me, it is simply the most recent example. It’s a comment that makes me see red, and I’d probably still see red on this subject even if I were not on steroids.

My chemo brain does not stop me from fondly remembering the days when I could have multiple plans. It does not stop me from yearning for the days when I could socialise two days in a row. The thought that people in my Support Network think that they do not see me, or I do not attend events simply because I am not trying hard enough plagues me. Hence my red rage at the weekend. I think, and I know I am somewhat biased in my opinion, that I do try incredibly hard.

Given my current treatment schedule, I have not had That Friday Feeling for a long time. Thursdays through to Sundays tend to be my worst days, and they tend to roll into one big lump of time rather than four distinguishable days and nights. On the occasions when I make weekend plans, because, you know, I am 30 years old and need to live, it’s a military operation. I am going away this weekend, hopefully to enjoy myself and in order to facilitate this, I have ensured that I have no plans on Monday and Tuesday. I also forced myself to sleep for 24 hours since Wednesday morning. I have no idea if my planning will actually be of any benefit. Worrying about it, is also tiring. Can you see a theme here?

A friend of mine said to me that I always seemed to be busy and this makes it very difficult to plan anything with me. It was a conversation that made me cry like a baby when I was alone and had the time to think about it…. I suppose, to some extent, I am busy. My fatigue makes it very difficult for me to be flexible. In order to go out a few days a week, and by out I mean a meal, a trip to the cinema or my hospital treatment, I am forced to rest on all the other days of the week. Few will see and understand how difficult this can be.

It’s difficult on so many counts. It is difficult for me to go out and it is difficult for me to stay in. I strongly suspect it is a balance I will never get right. I pull myself in so many directions on the subject, but so too do the people in my life. I hasten to add that they do it for the best of intentions. On Wednesday for example, a Senior Medically Trained Person gave me a slight telling off for doing too much, and by doing too much, I am apparently making my fatigue worse. It is not my interpretation of my life but what do I know? I studied modern history, not medicine.

I could go on and on about this until the end of time, but that’d just be a waste of my energy. And so, I will end this. I need to rest my head.

EJB x

P.S. I promise that Part III will be like a double expresso with a pound of sugar, as opposed to this, which I would compare to a two day hangover. Everyday.

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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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