Trial By Error? 

It has been a mere 16 weeks since I started my trial, which now consists of fortnightly doses of Daratumamab, steroids and an antihistamine. 

I say ‘mere’ in an attempt to justify the fact that there have been no blogs for nearly that entire period. On the one hand, mere sums it up nicely. The weeks and the doses have flown by and I have nothing to show for it. Looking back on it now, I feel like hardly any time has passed at all. 

On the other hand, I am telling major porkies, for there have been several periods during the last 16 weeks where I would have described the trial as relentlessy slow,  frustrating and exhausting. Perhaps if I shared these feelings with you at the time, I would made things just that little bit easier for me. I could have had mini data dumps on you and off loaded. I was just too tired to put words to keypad.

There is another reason too, one which came into my head only yesterday. On this trial, I am always waiting for something. Waiting for a result, waiting for a clinic appointment, waiting to see how I feel, waiting for a development. Waiting for something that gives me some sort of conclusion to these short stories about my life that I have decided to share with you. The conclusions have not come.  Thus, this has made me feel like any recent story I had to tell about my treatment (or anything else for that matter) would be incomplete. It worried that it would be more of a whinge about how much of my life is about waiting for something to happen with my treatment. At times, it feels like I am waiting for everything. I do not wish to come across that way. I like to think I am realistically positive, but can that be interpreted through my writing when my brain feels less able than it was when I started it. 

I like a story with a beginning, middle and and end, featuring as little ambiguity as possible. Don’t get me wrong, I do not need to be spoon fed (drugs permitting) and I can withstand the test of endurance that is a modern day Terrence Malick film, or in fact any film that is described by a film critic as ‘meditative’ but personally, I prefer just a little bit more clarity. And my life of late has been left severely wanting in that area.
So, here I am. There is no end to this story. All I can say to you is that I am not dead. Not yet. To those of you who were concerned that I may have passed to the other side, I thank you for thinking of me and for worrying about my absence. I am back. It does seem like a lot is going on at the moment, so I will have many a half finished tale to tell you. Fingers crossed.

Yesterday, the 17 August, marked my five year cancer anniversary. It was a loaded day. There is so much to remember about this period, and Daratumamab accounts for just 5% of the five years. You would think that I would know by now that I rarely get an end to my stories. Only occasionally have I been able to announce an end; the end of a chapter, or an end of volume have been my particular favourites. In reality, I know I should just face the facts that my life from now is ongoing, until it stops. And thus, I have no excuse to not share what is going on with you. You are, after all my cancer diary. 

Getting back to The Daratumamab, the one thing I do know, is that it has not been easy nor straight forward. Has any of my treatments? 

I flew into this treatment after a week’s radiotherapy and two weeks after I had received some very bad news. I was shell shocked and exhausted. I started the treated not knowing what it was and without fully understanding what the aim of the treatment is. I still don’t know and this is because every time it is explained to me, my painkillers kick in and my brain floats off into NeverNever Land.  I just know that being on the trial far outweighs the alternative of not, and for now, that’s okay with me. 

If I have learnt anything important since I started on the Daratumamab, besides from how to pronounce it, it’s that being on the trial is better than not being on it. It may be lonely, my body may be being used as a corporate guinea pig, but I don’t care. I am happy I am on the trial. Scratch that, I am grateful to be on the trial and everthing it encompasses far outweighs the negatives of being on a trial. The negatives by the way, are several, but in the grand scheme of my life, I can live with them. 

It would be really nice if I were now to talk you through each of my treatments. To build up a narrative, and to get you to feel even a little bit of what I feel every time I enter St Bartholomew’s Hospital and the times I am not there, lying in my bed thinking about it. That’s an awful lot of visits to go through and my short term memory is highly questionable, so I am not going to do that. Maybe I will one day. Maybe I will today. Right now however, I’m going to jump straight into what I assume you want to know and that is, how am I doing? 

How am I doing? 

Medically, I had to wait a long time for that to be answered. Two weeks ago, I did have an answer, but as of yesterday, I am right back into the Land of Worry, led by the President of Anxiety with her Cabinet of the Unknown. 

I did not have a clinic appointment for the first two cycles, which for cyber attack reasons, was nine weeks. Before that, I faithfully went in for my treatment each week, without knowing if the trial was doing anything. I went through various emotions during this period and in the end, I had decided that I would prefer to not have clinic appointments and only be informed if something bad was happening. Unfortunately, I didn’t actually tell any Medically Trained People this, so when I was telephoned on a Friday afternoon to say that I had to see The Big Prof on the following Monday morning, great panic ensued. Why now, I thought? Why with the greatest of haste? 

In my panic, I ignored the fact that the appointment marked the end of my weekly doses and the beginning of a new cycle. I also ignored the fact that I had not seen The Big Prof since I had walked into his office eleven weeks earlier and he made a space for me on his trial. I irrationally thought the worst.

This was sometime around the beginning of June and I can confirm that it was not the end. My paraprotein had remained stable throughout the nine weeks of treatment; it had not fallen and it had not risen. As a layman, I would have liked to hear that my paraprotein had gone down, but The Big Prof said he was happy with my results and signed me up for another cycle. I was to return to see him at the end of the next cycle, four weeks later. Apparently, that’s how frequently I should have been seeing him; at the end of each cycle. 

Something happened between my first clinic appointment and the second appointment. Well, a few things. I went on holiday, which meant having a month’s break between treatment and more importantly, pain returned to my body. That’s wrong too, I am not sure why I am unable to say what I mean on the first attempt. Pain is a multiple, but mostly managed daily experience. I do not have a day without pain. The word I omitted was ‘new’. New pain returned to my body. I have only experienced ‘new pain’ in the past when my disease was increasing. So, in this circumstance, I did what any sensible person would do who was desperate to go on holiday. I kept it a secret. I kept it a secret for two whole weeks before I blurted it out to Mamma Jones before we went on our holiday. I do not think I could have held it in any longer without inflicting serious mental health issues upon myself. 

Three to four weeks later, it was clinic time once again and if I thought I had been nervous at the start of June, I do not know what words could be used to describe what I was feeling on 2 August. It was not pretty. I had roped Mamma Jones into this one. I knew I could not do it alone and not surprisingly, my dear Mamma used up a day’s annual leave to come and support her baby during her appointment. I’m not ashamed to admit when I need my Mamma and she is always willing to oblige. I don’t want to gloat, but she does it so well. She even managed to keep me calm during the two hour wait in the most uncomfortable of uncomfortable waiting areas with her small talk and usually, small talk is not her forte. 

I had somehow managed to avoid thinking about it on holiday, despite increasingly bad pains, which just so happened to coincide with too much physical exertion. My holiday is another blog, but for this story you just need to know that I pushed my body to it’s limits, and beyond what I have medically been told I can do, so I could enjoy myself.  Experience it properly. By the end of the holiday, I could no longer put on my own shoes and socks. It was all worth it of course. The new pain, however in my right rib cage, once the excitement of the holiday was over, started to cause more pain than just the physical pain. 

So, having self diagnosed myself, we walked into the Medically Trained Person’s office to be told that everything was okay. I was shocked. My paraprotein still remained stable and despite putting on a bit of weight, I was clinically well. Mamma Jones and I left, I apologised to her for having to lose a day’s annual leave over nothing and I breathed a massive sigh of relief. Or four.

It was not long however, maybe even in a matter of hours, that I realised that I was predestined to have these feelings of anxiety repeated in the lead up to all future clinic appointments. I personally feel like I am hanging on to this trial by a thread, with what happens to me, being completely out of my control. When the bad thoughts creep into my head, I do quickly try and grasp on to a more positive spin. I want to stay on to the trail. I want to stay on and experince more of what this mortal coil (the right term for the state of the world at the moment) has to offer. I would say that in the circumstances, I am as positive as I can be. I’m realistic with it too, so when I feel something new in my body or I experience something that is not quite right, I am bound to worry. I am concerned that there are times that I can be too negative. I have discussed my behaviour with my counsellor and she says that pre clinic anxiety is perfectly normal and that acknowledging my fears is much healthier than behaving like I do not have cancer and I am not where I am in the long line of myeloma treatment.  I’ll take her diagnosis. 

It does feel natural now to worry about my success on the trial, given there isn’t that much out there, drug wise available to me. I can understand why I never truly feel comfortable too. Between appointments, I try to block as much of this out as possible. In my free time, I make sure I do as much as my body enables and that definitely goes someway to refill my faithful old ‘good cylinder’. Since my treatment moved to fortnightly, I have fully embraced getting a week back of my life, and I use it productively to live and not wallow. I have also lost the guilt I felt whilst my treatment was weekly, that I was not living enough. I was just too bloody tires 

In the last few weeks of the weekly doses, I really struggled. During the first few weeks, I had calculated that with treatment including steroids on a Thursday, steroids at home on a Friday and Saturday, followed by the inevitable crash on at least Saturday if not Sunday (and Monday), I was afforded two to three good days before I was back having my bloods done on a Wednesday morning. Then, everything started again on the Thursday. That two-three ‘good days’, days in which I was able to do something like a single trip to the cinema or a trip to the pub were invaluable but fleeting. A ‘good day’ did not equate to A full day. 

Gradually, as the weeks progressed, the number of ‘good days’ decreased and I longed for the fortnightly treatment. I had a week off treatment because my hospital was a victim of the NHS cyber attack, or whatever you wish to call it; I am no IT expert.  That week gave me a taste of what was achievable in a week off, and it felt like  freedom. Realistically, when you count the days I had appointments at UCLH too, I was down to one ‘good day’ by this point. As much as I enjoyed that week’s break, it made the remaining weeks feel like torture. Thank goodness for my Support Network.

I started receiving the Daratumamab fortnightly on the 14 June. To date, I have completed one and a half cycles, which equates to four doses. Technically, I do not require any more doses in this cycle but the next one, will not (hopefully) start for another 13 days. 

All of that nearly brings me up to date. Nearly. Yesterday was treatment day and it was five years and three days since I was admitted to another hospital with an elevated calcium level in my blood, leading to my diagnosis of multiple myeloma on 17 August 2012. Yesterday, I was told that I once again had an elevated calcium level. I am sure there are many medical reasons for this result, but to me, it answered my questions of why I have been experiencing the ‘new pain’, memories of five years ago fresh in my mind.  

The Medically Trained People I saw yesterday were ward based, which means they are not responsible for my overall treatment, if they know anything about my overall treatment at all. They approached the subject part calmly and part like a headless chickens.
The news of a high calcium level was met with my tears. The tears may not have come were it not for the anniversary, but I doubt it. I am so aware of failure that I probably would have blubbered like a baby regardless of the date or regardless of the cold way it was broken to me. “Are you on any supplements?” probably was not the best way to tell me, but that’s what happened so I just have to move on and acknowledge that the Medically Trained People working on St Bart’s daycare are extremely busy. 

As I wrote a few paragraphs ago, the result would answer why I had been experiencing the ‘new pain’ and generally why I have recently been feeling a little ‘off’. I asked  for my paraprotein result and I was told by the doctor that it had risen by a tiny amount. ‘Tiny’ was emphasised by a hand gesture and a closed eye. I asked for the actual figure and it had risen by six based on the bloods taken on 2 August. Is an increase of six tiny? I would have said it was, but then, I am not medically trained. 

So, where does this leave me now, does this story have an ending? In a word, or in four words, I do not know. Yesterday it meant receiving two large bags of fluids, which has left me peeing practically non-stop since. In terms of my long term health?  I do know is still my answer. I will have to wait for my next clinic appointment on 30 August. A clinic appointment where they will thankfully not be working on month old results. I know it will be a clinic appointment where my anxiety levels will once again go sky high. I will try and live next week, but I doubt the next clinic appointment will be far from my mind. 

Last week, I told various people in an attempt to justify my feelings about my treatment and life in general, that I lived month by month. I strongly, most adamantly believe this to be true. It’s like waiting for scraps, accept just with higher consequences…

So, this blog has now come to an end.  Is there an ending? I hope it is not the start of one. 

EJB x

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One thought on “Trial By Error? 

  1. Jane Davis says:

    Really just very glad to hear from you, albeit with some difficult paragraphs to read…….one can only hope…xxxx

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