Tag Archives: frustration

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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The Frenzy

I am well known to be able to work myself into quite the frenzy prior to my clinic appointments. My version of a frenzy anyway, most the time such a frenzy is something to be stewed upon in silence; that way I can pretend it is not a big deal. There are many factors that can heighten or lower my worries, but regardless of whatever they may be, there is always a level of anxiety before any appointment with a Medically Trained Person. It’s guaranteed and I believe that is why I require so much sleep after such an appointment.

Yesterday, my pre clinic appointment anxiety was particularly high. It had been brewing since last Friday and it is for this reason that I opted to wear a black top yesterday morning instead of the cream one I actually wanted to wear. Nobody needs to see back sweat through a silk cream blouse. I do not believe that is what a Marks and Spencer’s intended

The reasons for my worry, were as follows:

😁 I had a MRI scan on Tuesday, that I did not request, but was arranged because the Medically Trained People wished to see my progress since my relapse. In my mind, it is part of a conspiracy.

😁 Regarding the MRI scan, I was told at my last clinic appointment 28 days ago that I needed to have the scan before my next appointment so we could discuss my progress. Progress means change, at least I think it does.

😁 At my last clinic appointment, I was also told that my paraprotein had to get to 10 or below before I could have the referral to discuss my transplant options. After that appointment, the transplant would likely take place two months later. At that time, I thought my paraprotein level was 15. As in, years away from 10 or below.

😁 Last Friday, I found out that instead of plateauing, and in spite of being on reduced chemotherapy in October, my paraprotein level had fallen to 12 as of 23 October.

😁 Finding the letter with these results on my return from a trip to the hospital, made the excursion to UCLH for a simple blood test almost worthwhile. As the blood test also included a paraprotein test, it meant that there would be an up to date paraprotein level when I visited they hospital six days later, something that does not usually happen…

😁… Thus there was a chance, or I let myself believe that there was a chance that, that very result could be below 10. There was a chance that I could get that referral and by default, I would get some tangible put it in my diary progress.

Like any old pro, I spent most of my week trying not to think about what would be said at the appointment, whether it be good or bad, which in reality meant that I thought of mostly nothing else… Good and bad.

Upon arrival at the hospital yesterday, The phlebotomist took five tubes of blood instead of three. The conspiracy continues. As I checked in on the fourth floor before my urine sample, I noticed that there was a certain Medically Trained Person doing the clinic who we shall call, The Bad News Deliverer. 😁

As I sat patiently and waited for 95 minutes for my appointment, it became apparent that there were only two doctors running the clinic and the only one I knew was The Bad News Deliverer.

In a nutshell, the presence of The Bad News Deliverer + a long waiting time x everything else = 😁😁😁😁😁

I hid it well. I genuinely did, for The Bad News Deliverer noted when I sat down for my appointment that it is easy to forget the impact of myeloma on my life when I always come in for my appointments smiling.*

So, having monopolised my thoughts for much of the week, and I dare say the thoughts of the immediate Jones Clan, I can now say that the clinic appointment was anticlimactic. It was anticlimactic because the Bad News Deliverer did not deliver bad news, nor did he deliver any glimpse to the end of this limbo. What I got instead was a very normal clinic appointment, well apart from the start of it where one could have easily thought I was referring to myself in the egotistical third person. I was actually quoting somebody else talking about me whilst I was in my presence. It may also have come across as egotistical.

Emma just needed time to realise that that the behaviour and and comments from some people in her life were not acceptable and she needed to learn how to manage them; Emma uses CBT, well, she has developed her own version of CBT; Emma puts on a brave face, it is easy to forget that she has bad days’

Anyway, so yes, regarding my treatment I had nothing new to mention to mention. That’s a lie actually, I’m experiencing slight ‘bladder issues’, but I forgot to mention them because I was nervous. My bloods were fine and my paraprotein has reduced to nine.

Nine is less than 10!

I asked about the referral as discussed previously and the Bad News Deliverer said that he was not sure about it, so he would speak to the necessary colleagues and get back to me. I understand that this response is not his fault, but it was not one that provided me with the clarity I wanted, nor the one I thought I would get when I was once again in single figures, and thus my frustration will continue for at least another month.

Using my own version of CBT however, I have spent my time since the appointment seeing the bright side in what was discussed. Obviously, the main positive is that my pp continues to go down and for my body, I do not consider reductions of three to be a plateau. History says five cycles in, it’s actually good for me. Secondly, the MRI scan showed that there had been improvements since my previous scan and there was evidence that the radiotherapy had worked. I still have evidence of the disease, but I could have told you that every time I bend down, rollover, stand up or move. Lastly, I am telling myself something that I have learnt the hard way, it could have been worse and I should therefore be happy with that.

Yesterday then, I entered Cycle 6. Cycle 6 includes the full drug regime of which I have become accustomed. It’s not Groundhog Day; it’s progress. Yes, it is most definitely progress. At least, that is what it has to be.

EJB x

P.S. I am very aware that this whole Bad News Deliverer thing is irrational, and evidently not true. The person in question is a very nice human. I am working on this.

* Not blowing my own trumpet or nothing, but this came up because news got back to The Bad News Deliverer that the talk a fortnight ago with the Macmillan staff was well received. I’m playing down what he said because, like I said, I’m not one to blow my own trumpet. 🎺

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October

As most of us, come mid November are trying to concentrate on the important things in life like the John Lewis’ Christmas advert or Kim Kardashian’s posterior, this Novemember, there is something holding us all back. Something niggling in the back of our minds like an unpaid gas bill… Chill. Relax. I am here to help. That something is the unanswered question, what the blooming jib jabs did Emma get up to in October?

Well, let me tell you. It’ll build up our defences against the festive cheer in our supermarkets.

In chronological order, I went on holiday, I attended many, many screenings at the London Film Festival and then I got depressed, and best of all, I did not want to talk to anybody about any of it.

I can sense your confusion, for two of those things listed above sound like annual highlights for the likes of me. They were. My sadness arose when I asked myself what was to come next and I had no answer. Since my relapse and being signed off work, my long term planning expired on the 19 October. October was to be my month of fun and then afterwards, I would focus on my treatment and my transplant. I have always managed my myeloma like this, in bite size chunks. The problem is, my treatment is unpredictable and whilst this is nothing new, at the moment, I find it almost impossible to plan anything that is not about myeloma. Hell, because of my stubborn paraprotein, we can hardly plan anything related to myeloma either. It made it very difficult for me to see a positive after my last screening. In fact, I felt leaving the last cinema that my fun had just stopped. The limbo and the waiting is not a new revelation, and most the time I am content with that. October’s issue? I knew that I had nothing specific, nothing exciting like a holiday or the London Film Festival to look forward to. They were in my past. My future, as things stand, is uncertain. I do not like this one bit.

I need the a buffer.

I find it very difficult to admit to myself that I found a luxurious holiday and the viewings of 20 arty farty film bittersweet, but I did. I struggle not knowing when I am going to get to do them again. Imagine that for yourself. Worse than that are the times when that specific when becomes an if, and then what you get is somebody who feels quite sorry for themselves who wants to shout crude words as loud as she can and unleash he anger by punching things. Of course, she cannot punch things because it would hurt her back, a knowledge which creates more pent up frustration. Furthermore, when I vocalise these things, I do not just upset myself and I am ever mindful of that. My immediate response last month, was to keep all this to myself.

That approach never works for me, as the uncontrollable three hour nap after a counselling session on 3 November proves.

The enjoyment I had over the first three weeks of October would not have been possible had my body not struggled through my third treatment cycle in September. Keep up with this next bit because it is a complicated timeline involving too many numbers. The chemotherapy had given me a neutrophil count of 0.48 and a white blood count of 1.3 on 25 September, and thus a decision was made by the Medically Trained People to cut the cyclophosphamide out completely for Cycle 4 and halve the Revlimid dose. It does not take a genius to work out that less drugs mean less fatigue. It does not mean no fatigue, however but it meant that I had noticeably more energy for those 28 days.

Cycle 5 started on 23 October and with that came the return of all the strong stuff, the impact of which was almost instant. It was a noticeable change that just happened to coincide with the morbid thoughts. It was a change that meant that I could see the difference between drugs and less drugs, and I do not know quite how I feel about that difference on my life. Also on this date, I was told that there is still no timescale for my transplant. All I was told is that my paraprotein had to get to at least 10 (it was 15 on 25 September), before I could get a referral to the People Trained in Stem Cell Transplants and then, any transplant would be at least two months after that. More and more limbo.

Consequentially, as happy as I was to be able to leave my flat everyday for the ten days I experienced LFF and to walk around the ruins of Herculaneum, I worried that on the otherwise of the coin, I was experiencing a setback in my treatment thus extending the excruciating limbo further. For how was my paraprotein expected to reduce on less drugs when it’s reduction had already started to slow? Was it a case of history repeating itself? These were questions to beat myself up over in the nighttime. And the daytime. All the time.

It has been a few weeks now, and I can confirm that I am feeling better. Less maudlin and more receptive to John Lewis’ penguin. I know the limbo will not go away any time soon, nor will the uncertainty over the success of my transplant and whether that means that I will never be able to leave these fair shores again. I just have to find a way for these facts to not make me crumble. If I am having any sort of crumble when the clocks go back and it is getting cold outside, it’s the sort that comes with custard, not salty tears. As a dear friend told me at 02:00hrs one morning, I have many things I can do to fill the time in this limbo. One day, potentially one day soon, I’ll tell you all about them.

The moral of this story is that there are days when I feel like I am an old pro at all of this and there is nothing that can possibly surprise me, and I think I am managing it all well. Then there are other days, weeks or months, when the melancholy will come out of nowhere, taking me by surprise by squatting in my head, and I feel completely naive and scared. At the start of October I thought I had appropriate defences to protect myself, which included my holiday and sitting on my bum in the dark in a room full of strangers. Evidentially, I was wrong…. It is just the way the cookie crumbles.

EJB x

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Broken Record

Last week to my surprise and utter disappointment, I was fatigued. My fatigue was such that I feel like I have spent the last eight days in a haze and last Monday was just a moment ago. The hours pass too quickly for my drug altered mind. I knew on the Sunday before the Monday, that I was tired and I had probably, maybe, most definitely, pushed myself too much in the previous week. I had subsequently factored that into my Monday. Monday would be a rest day.

Monday was indeed a rest day, as was the Tuesday and Wednesday, and now we are back to one activity a day. To me those days last week, were more than rest days, they were days spent feeling ill barely moving. Scared that I was perpetuating this bastard, and worried that this sort of behaviour breeds more of this sort of behaviour, I forced myself to do some activity outside the compound. During each activity, I felt under the weather and experienced withdrawals from my bed. It took over. I spent the rest of the week doing the odd activity, but everything was a struggle. If I pushed myself in any activity, I paid for it after. If you feel like I have told you this before, it is because I have. I am a broken record.

I felt like I had regressed. My energy levels were reminiscent of me four weeks ago. I have been told that it will take a while for the fatigue to subside, but I expected my recovery to be made up of gradual improvements. I did not expect and nor do I want troughs in my peak.

The troughs are grossly unfair. I so much want to be able to improve. I can just about handle the speed as long as I am not reverse. I want to be able to tell people that I have done more with my day than the dishes. I want to have done more in the day than my dishes. I want to be able to go out for lunch and not follow it with a four hour lie down and that is on a good day. I do not want to be predictable. Two weeks ago, I felt like I was getting there. Last week, I did not. Today, I am still climbing out the trough.

Am I making it worse? I sincerely hope not, but then, if I were making it up, at least I would be better. I beat myself up over it and that is something I promised not to do. My crashes are not my definition of relaxation station, in case you thought I spent them in clouds that smell like lavender. They are fraught with guilt, frustration and waiting, and not sleep. I am a broken record. Napping would be preferable. Last week, I actually yearned for my post treatment nap, so popular during last season’s PADIMAC trial.

Most of all, I miss my brain function. I want to sit down and complete a task. I want to be able to recount more than what I have read in the column of shame. I want to follow every conversation I have. I feel like I am missing something great. Right now, there is no tangible achievement in my days and that makes things go terribly quickly. It a loss.

Not one to sit on my arse about this, I did seek some advice. The Macmillan booklet on the issue of drug induced fatigue recommends keeping a chart of the peaks and troughs to assist one in planning their days around them. I suggested that people did it so they could look back and identify improvements to give them hope. I for one struggle to recall how I was on any given day because the fatigue is not just about being tired, it is everything I said above and more. Memory lapses make me even more of a broken record. Anyway, I think the chart is a marvellous idea, I am just too goddamn tired to complete it.

I’m not where I was at the start of August, but then I am not where I was in May either. I want to be able to offer more. I want to change the record. I am bored of it and I am bored of people telling me it will get better.

Clearly, I need some work on my patience.

EJB x

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The Red Herring

What does feeling better feel like? Are we there yet? How much of the biscuit have we had? Half? Three quarters?

Yesterday afternoon, I told somebody I could see it. That I could feel it. feeling better. In my sleep on Thursday, I finished a bottle of water and when I woke, I requested another bottle. I was drinking. I wanted to put a bra on. I also had an improved attention span, accompanied by a reduced desire to sleep. I did two jigsaw puzzles. Such was my improvement, that I took myself out of my bed and onto the sofa. I moved rooms. I also cooked something in the oven. I had faith that I would not fall asleep in the 20 minutes it took for me to heat some chips.

I was not capable of standing for a long period of time nor was I able to explain the principles of utilitarianism, hell, I still cannot of getting dressed, but I felt better. To me, yesterday’s improvement did not feel subtle; it felt magical. To anybody else looking in, I am sure I still looked like a weak person, with cancer, in need of assistance. The changes I experienced, to them, would have been subtle.

My physiotherapist recommended that I keep a diary of this period, noting what I could not do, by day, so I could look back a few weeks later, and realise the improvement. Up lifting, page turner. I should have known then, that this was going to be slow. And the improvements were going to be subtle. I am not keeping a diary by the way. I do not need further evidence of my regression to childhood.

I hate the subtlety of this. I hate giving my body time. Hatred and frustration defines me at the moment. I want improvement to move at the speed of light. Failing that, I would take improvement at the speed of sleep. I want to fall asleep feeling like I currently feel, to wake up and find that I can get dressed, stand up for longer than five minutes and leave my house for six hours. I am not unrealistic. After those six hours, I would expect to be tired and I would go back to bed. I just want those six hours. In that six hours, if I could not leave my house, I could bake or hone my arts and crafts skills. I could do something that is not lying.

The mental anguish this subtlety puts me under is worse than the physical pain I have to endure. My physical worries are not great enough to make me not notice my incapacitation, but they have not improved enough for me to be where I want to be. All this does is give me time to think, time to dwell and time to get mad.

It is a wonder that I am able to speak to people without shouting or crying the minute I open my mouth. I feel like doing both, but the latter for sure, would be a real waste of the water i do drink. I presume that the opportunities for me to converse are currently so few, that my survival mentality kicks in, and I have to be nice and calm, to ensure that they come back. I have to not show I am upset. I become grateful.

I am constantly being asked whether I am feeling better, and I appreciate that of course, but my improvement is too slow to provide am answer. If I answer with a negative, is that just me, being negative? If I answer positively, people misconstrue the significance of the improvement. Better is not better.

Yesterday morning I did feel better. My ability to drink more than a sip, was the key indicator. For a period, I was also able to converse. I was walking around. I did a fruitless search for dead rodents in the garden. For an hour, it felt like a school holiday. And then, it did not. I couldn’t do those things. Better is not better. My deterioration was not subtle. Every gulp of water I had had, every morsel I had eaten, during my period of good health, rudely and uncomfortable made a reappearance. Once my stomach had emptied itself, without the need for digestion, I became a weak little thing who needed her mummy. Vomiting is never fun.

And that brings you up to the present. I am in bed. I am weak. I am not wearing a bra. I am frustrated. I also keep forgetting that I cannot lean or roll to my left, without causing a lesion headache.

All of it, really is very annoying.

EJB x

P.S. Thursday’s Full Blood Count did not contain any shockers by the way. My boaster from the previous Thursday had worn off, but everything seems to be ticking along.

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