Tag Archives: Results

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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Ignorance is Bliss

I have been so focused on fixing my back pain, a pain which occasionally spreads to my neck and legs, that I have rarely thought about my paraprotein level. In addition, my current treatment is rather difficult, and now, three quarters of the way through my third cycle, there are still so many other, more immediate things to concern myself over. I have one clinic appointment every four weeks lasting about 15 minutes where I have the opportunity to discuss everything that I have experienced in the four weeks previous, and so, by the time it comes for me to ask how my paraprotein is doing, it has slipped my mind.

My neutrophil count for example has twice been at 0.85. A quick google search revealed that this means I am suffering from moderate neutropenia. As a consequence, I am now on weekly G-CSF injections to boast my immune system, and on daily watch for any changes to my body. It is a figure that comes from a Full Blood Count, which takes the Blood Taking People in the Cancer Centre 15 minutes to process. The paraprotein test takes a few days to return and thus, and result I get will always be out of date, and will almost always require a phone call if I wanted to know what it was.

At the start of Cycle 2, cyclophosphamide was added to my treatment cycle, which is something else that took up time key discussion time in my appointment. I also sensed during that appointment that if another form of chemotherapy was being added to my treatment, then I could not have done that well in Cycle 1. Of course, having thought about this in many of my alone hours, at that point, the Medically Trained People would not have had my results from the first treatment cycle. It did not stop me from wondering and worrying however, and that wondering and worrying led me to one conclusion; ignorance is bliss.

Three weeks ago at the end of Cycle 2, I was told by maybe my second favourite Medically Trained Person that my paraprotein had indeed reduced. It was at this point that I realised that I did not even know what I started my treatment with. On the 23 June, when I was told I had relapsed, it was 20 and I figured then that it did not matter what the figure was thereafter, all that mattered was that My Myeloma was active once more. By the time I started my treatment a week later, it had risen to 26. Halfway through my second cycle, the level had reduced to 18. When I was told this, I openly admitted that I had not thought about asking what the magic number was, and in response I was asked whether this was because I was afraid of the answer. That is a big question.

I think I was afraid of the answer. Not seeking the answer was a position I reached by default. If it was intentional, I did so subconsciously. I have experienced the excitement of a reducing paraprotein level followed by the plateau two times before, and logically, my previous experience is always in the back of my mind when I think about my illness and my future. The Medically Trained Person was pleased by my results and said that I could soon be at a partial response. Every part of my being wants to get to a partial response soon, but I fear history repeating itself. I do not need that sort of negativity, so what I had actually done, inadvertently, is not consider it all. I get up everyday, I take my drugs three times a day and I stay in the flat when I need to stay in the flat in order to save my energy. I do not want to spend the next however many months, crossing my fingers reliving the feeling of getting my A Level results, worst still, the disappointment of my GCSE results.

I learnt from my previous treatments that living for that result at the end of each cycle, is not mentally healthy. It does not ease my mind. It does not send me to my happy place. All it does is make me worry and occasionally it makes me cry. I need to keep my head high and that too needs to be a priority in these darkish days of twilight. Of course, as much as I do not want to live for the numbers, I want the number to reduce as much as it needs to ten times more. The weight I put on this means that I cannot overthink it. What will be will be, right?

There is a difference between my current stance on following my paraprotein and negativity. I do not sit at home all day and all night long thinking that my treatment will fail, I just try not to think about it at all. Myeloma dominates my life at the moment, but I do not want to live for it. When I think about the numbers, no matter what it is, I will always want it to be lower and that does little for me and little for those around me who have to manage my disappointment.

At this point, all I need to know is that my treatment is working, and the sacrifices I am making, the monotony of each day is worth it because I am actually getting somewhere. I will not ask for anymore because I know that it is not realistic for me to ask for it, despite the people around me wishing to know the scores on the doors so they can measure my progress.

The initial excitement I had when I found out that my paraprotein had reduced soon past, when I realised the dangerous, all so familiar path it would take me down. I know it is dangerous because I know that the Medically Trained a People know what my results were at the end of the second cycle, and once again, I am afraid to find out what it is. I need to carry on thinking that all of this is worth it, nothing can contradict that, even the truth.

EJB x

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An Exercise In Paranoia

When it comes to my illness, I am constantly on hyper alert for bad things happening. It’s not really an alert, I now expect bad things to happen. It did not used to be this way, except if you count the time I went to the doctor because I had a cough that I thought was lung cancer, which subsequently turned out to be myeloma. That old chestnut.

These days though, if I experience any change to my body, I fear the worst. I easily convince myself that the worst is coming. My favourite fear, is the thrice weekly belief that the pain I get in my head when I lean to the left is a brain tumour. Let us rue the day somebody said the words ‘secondary cancer’ to me.

The paranoia usually starts from the simplest of things and then, over a period of time, it will slowly spiral out of control to the point where it is all I can think about, am reunited with insomnia and have the constant sensation of needing a poo. I have a perfect example of this mania, which I am going to share with you now, because I am sitting on a train and I have the time and inclination to do so. Enjoy.

August-November 2013
I experience a slow and steady increase in back pain, though torso pain may be more accurate, because that covers my rib area and collarbone as well as my stupid spine.

Thursday 7 November 2013
I share my the tales of my pain with the Medically Trained People and I am told that that does not match my biopsy results, which as you should all know where ‘good’, and thus, I am booked in for a MRI scan. I was rather pleased about this.

Sunday 1 December 2013
I had my scan, which was very painful. You might know this already because I wrote a blog about it, though I am not entirely sure if I published it, because that seems to be the way things are going at the moment. Anyway, I am digressing. It was extremely painful. I found, upon my arrival and after donning the hospital gown, the staff to be dismissive and uncaring when they put me on the slab. I was just told to lie down and shoved right in there; I was not treated like when I came out of the tube. Why was that though? Oh Em Gee, what did they see on the scan? They were definitely taking pity on my, whilst being thankful for their lives even though they were working on a Sunday. The pain would not have been that bad if nothing was wrong, would it? I was informed that the results would be sent to my ‘Doctor’ (fools, everybody knows I have several of them) in a week.

The Following Week In December 2013
Washing the dishes and in my mind, like a big neon sign, was the word ‘TUMOUR’. Then, whilst I was in the bath, a little nursery rhyme appeared in my brain telling me that my L4 was about to snap. I was on the bus and there I thought that it had snapped along with all the other lesions on my spine. Get the picture? The bad thoughts were there and I did not like them.

Wednesday 4 December 2013
In the middle of my imaginative nightmare, I decided to send a casual email about my scan to the Medically Trained People and in the response I was told that the results would be looked at at the Monday morning meeting, and they would be discussed with me the next day when I came in for my velcade. At this precise point, when I was visiting Mamma Jones in hospital after an operation, my paranoia went up a step and then for the next six days, I counted down the minutes until I arrived on the Second Floor for my injection of Cilit Bang.

Tick, tock, tick, tock, something bad was going to happen, tick, tock. Appreciate budding flowers and a clear sky. Tick tock.

Tuesday 10 December 2013
I arrived at the hospital with a slightly sweaty right armpit, which is pretty normal when I am nervous. As soon as I was sitting down in a grey reclining chair, I asked the nurse treating me to make contact with my other nurse, so she knew I was in. Unfortunately, the nurse treating me did not know who I was talking about, so I had to whip my phone out and provide the contact details. I waited. I popped my big toes. Sometime later, I was informed that my nurse was at lunch, but she would call me later to discuss the results. For this reason and this reason only, I turned the ringer on my phone on. And do you know what happened? I did not not receive a call. That evening, the paranoia switched to delusional, with a rather healthy spluttering of swear words, as I imagined the worst whilst being unable to hold my arm steady because of the nerves. I sought advice from the Support Network, who all told me to ring the next day. I then had a few alcoholic drinks to take the edge off.

Wednesday 11 December 2013
I did not call. I did not call because I was due a clinic appointment the following day and aware of my growing mental situation, I decided that as I was definitely going to be told that they could not discuss my results with me on the phone, which is why I had not received a call the previous day, I was best to enjoy my final day of ignorance, before I came crashing down to the reality of terminal cancer. Of course, this did not mean that I did not think about it. I did attempt to bring forward my appointment time, but to no avail. More waiting.

I went out that evening and somebody made inappropriate sexual advances again, and still, all I could think about was the fact that my MRI scan results were going to be catastrophic. Yep, by this point, I was facing a catastrophe. I had a few alcoholic beverages to take the edge off. I did not sleep very well.

Thursday 12 December 2013
Results Day! I arrived at the hospital, but this time, it was not just my right armpit that had a sweat on. I was moist and not in a good way. I made my way to the Fourth Floor and all I could think was, ‘do not give me the Big, Tall Senior Medically Trained Person’ for he is always my bearer of bad news. I’m sure he is lovely, but by default, he’s my nemesis right from the point I met him on 22 August 2012. It was a stuck record in my head. I waited, and this clinic was running particularly late, so I waited some more, watching people go in before me. I cursed the fact that I was there by myself, it was going to be the sequel to Bad News Day, I calculated which friends could get there the quickest. I filled the 50 minutes by taking photographs. They were not very good.

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See? I needed the toilet, I didn’t go. Instead, I spilt my tea all over my dogtooth jumper from Marks and Spencer; it left a stain. In the time I spent waiting, I noted that the Big Tall Senior Medically Trained Person was not there, so imagine how I felt when my name was called and it was by the person who sits above him on the Myeloma Department’s headed paper. I was going to talk gibberish, I knew I was going to talk gibberish, because at this point, I was a dead, stylish, lady walking.

I sat on the pink seat and looked at the Very Senior Medically Person, whilst I attempted to hide my shaking.

And then, the best thing happened, she asked me to remind her of my case, not only that, but she looked at the computer screen a great deal as she caught up on the latest EJ news. That meant one thing, the news was not bad. Phew.

From that moment, I do not really have much recollection of what I said for the rest of the appointment, for I was part relieved, part cursing my stupidity.

As it turned out, the scan results were good. My bones are improving, apparently my spine looks like there is a halo around it. I never consider good news. The increase in pain, I was told, is most probably muscular. I left the room, exhaled and broadcast the results to the nearest and dearest.

πŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺ

So, there you have it. A mighty fine example of my paranoia. A very similar thing happened last week when I was told I had asthma and a chest infection that required an X-ray. It took a week for me to work up the courage to have said x-ray. I think that was fine too.

The moral of this story is simple. I hate myeloma.

EJB x

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Single Figures

In my post transplant world, I have rarely thought about that pesky thing known as my paraprotein level. In the months prior to my transplant I rarely thought about that pesky thing known as my paraprotein level, for I was going to get the transplant anyway.

My blood is stubborn and so is the paraprotein and no matter what drugs I was given, it did not want to fall that significantly, oh no, it wanted to plateau. Plateau. If it was not plateauing it was increasing with aplomb. The bugger.

Way back when, I was told that my transplant would not bring me the remission I so wish for, and that the pesky thing known as paraprotein would remain. I am pleased the Medically Trained People told me this, for it meant that I could block out all the white noise to the contrary. I was told, that given my pre transplant level, to expect something around 10. And that is what I expected.

Today, I opened my post to find my post appointment letter and discovered that my paraprotein has indeed reduced. The miracle did not happen and it has not reduced to nothing. Damnation. Obviously. It has however, for the first time since we discovered I had one, a fact that is important to point out because there was indeed a period in my life where I did not have one, my paraprotein level has fallen to a single figure. I am so used to the template of the summary letters, that I thought the formatting was wrong, until I realised that there was missing a digit next to the word ‘paraprotein’.

My paraprotein is currently 8.

I do not know how I feel about this. At a guess, I would say that I am relieved that it has fallen below ten and my transplant achieved something, and on the other hand, I would say that I was disappointed that I did not get a miracle.

EJB x

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Certainty

I feel like my treatment can change daily. I also feel like nothing really changes at all.

This is my world.

In the last four weeks, there has been much progression with my treatment. Or at least, some clarity about where I will be heading when I come to the end of VDT/VTD at the end of this month. Until recently, I have not given a thought to what will happen after, because My Plan, did not involve being on VDT/VTD in the first place. It’s all very exciting. Daunting. And scary.

These would have made really interesting blogs individually, but that did not happen, so, here is a round up… I am still trying to get my head around it all.

Friday 17 May

Results Day. The day when I pretend that it is just a normal day and that I do not care about which way my paraprotein has travelled in the month prior. Except I do care, so there is the snag. This time around, I had also built up the relevance of my paraprotein because at my last clinic appointment, a Medically Trained Person had said that the result was ‘important’, but did not explain why. In his defence, he might have done, but I might not have been concentrating because. Was thinking about something else. Probably the pee I was about to do. That pregnancy test always gets me on the edge of my seat. It isn’t just me who sees the importance of my paraprotein level, those in my support network do, and last Thursday, every question I got about it, just made me more anxious about the result to the point where I did not want it.

The thing about my paraprotein, is that I fail the test every time. I do not know whether it is actually possible to fail a paraprotein test, but in my mind I fail it. I want my paraprotein to be zero, but realistically that is not going to happen anytime soon, so I want it to be below twenty. The problem is, I have absolutely no control over what it is. I cannot make it go below twenty or fall lower than it is going and I cannot see this as anything other than a big fat failure. Every time I get hat area protein result, even f it is a reduction, which it was last Friday, I view it as a failure. I cannot just work a little bit harder for this test, and cram the night before, it has a mind of its own, but people ask me about it like I can control it and I know what the results mean. Even after 8 months of this shit, I still do not know what it means.

I do know however that my paraprotein level is stubborn. It likes to hover around twenty. As I discovered on PADIMAC, it can also plateaux. Correction, it does plateaux. At the end of my first cycle of VDT/VTD, it had reduced to 23 and in the back of my mind, I thought, I had been here before and I knew that I would not be witnessing a paraprotein miracle. I would not be witnessing single figures. Last Friday, I knew for sure when I got my result and it had reduced by two. The key thing here, about from plateau of course, is that I had a reduction, and I myself that any reduction is a good thing. It is not the best thing, but it is better than being slapped in the face with a trout.

However, I did not need to convince myself that something good had happened, because something ultimately more exciting got my brain doing Zumba. A Medically Trained Person said, once I had my result, that they just needed to get my transplant in me. Now, for two and a half months, I had not allowed myself to think about a transplant. It was off the menu for me. Any thought of a transplant had to be bad, because of the complete devastation when I found out I was not having one in March. But there it was, the words had been spoken, and for the first time in a long time, I started to hope again that the end was coming. That I was getting close to the end of this chapter. I know I did, because for that weekend, it monopolised my thoughts and conversation.

Wednesday 22 May

Still thinking about what may have been a throw away comment on the Friday, I received a phone call. I was on the 38 bus. I have to answer my phone all the time now, because I am dedicated to my work, so it was a pleasant surprise to find that the call was not work related and was in fact from a Medically Trained Person.

I was informed that at the weekly Medically Trained in Myeloma Convention, I was discussed. It’s not because I am special, which I am, it’s because I am told, they discuss all the unfortunates. So, I was discussed and it was decided that because my level was plateauing, I was not going to have have my fourth cycle of VDT/VTD, no, instead, I was going to go straight to transplant because they did not think my level would reduce significantly with one more cycle.

I hung up and my brain went like this:

Fucccckkkk!?

It was not the circumstance in which I would like to have my transplant. The plateau. There is failure there and that was all I could think of. More failure. More potential failure. Though, I let myself think about this for a teeny, teeny bit and then, I made myself think forward. After all, the mental preparation for a SCT, at least for me, is significant and I had locked all that stuff away, that digging it all back up again was an exercise in itself. Dig I did. I rang people, and spoke to more, made plans based on me not being in treatment and dare I say it, I got excited. Full blown excited. That evening, my head was simply saying “it’s coming to an end, it’s coming to an end, it’s coming to end an.” It is coming to an end.

And then for first time in a long time, I was actually able to look beyond July.

Thursday 23 May

I was minding my own business, doing a spot of shopping in Sainsbury’s, which in itself is a rare occurrence because of the carrying involved, when I received another phone call. This one, again from a Medically Trained Person, took back everything that I was told the previous day.

Apparently, the most senior of Medically Trained People thought that as my paraprotein was still going down, despite its meagre pace, I should remain on VDT/VTD for the last cycle and then have my transplant. In reality, this was just a four week delay, however, I had spent 36 hours preparing myself for something that had once again been postponed. Yoda, wisely of course, told me mid whine that I was in exactly the same position that I was in the previous morning. I did not see it that way. I was being messed around again. There is nobody to blame for this, I am not that petty, well, I blame My Myeloma. Maybe, if I was to offer some constructive criticism to the people who look after me, it would be to check such proposed changes with key personnel before informing me, for a four week change may not be a big deal for them, but it is to me. This is my life. It is my working week and my Sunday rest and every change is a deal on the group text message proportions.

That said, in order for me to continue with the stuff that is living, I found myself in the position, yet again, where I had to convince myself that the course I was on, was the best thing for me. I would make a terrible salesperson, as in a terrible salesperson, however, I believe that since I was diagnosed with myeloma, my ability to sell things to myself, has improved greatly.

Thursday 6 June

It was clinic appointment time. My least favourite half an hour of the month. Mamma Jones accompanied me to this one, I had asked her to attend this appointment on the 22 May. FYI.

In this appointment, I received confirmation of what I had been able to piece together in the two weeks before it. The plan is ‘simple’. I will be having a transplant. Not a hypothetical transplant, an actual, real life SCT in 6-7 weeks time. How so soon I hear you think? Well, I will tell you. I have already been harvested, so, bar a biopsy and a few tests on my heart, I am good to go. Good to go once I have finished my fourth cycle of treatment. Good to go regardless of my paraprotein result.
Or so I am told…

This news, by the way, warranted another group text message.

Now

I realised today that I forgot to get my paraprotein result from my end of cycle on Friday. That clearly is because I do not care. I was also incredibly ill on Friday and the only thing I was thinking about was my bed. Correction, I was also thinking about EMan’s paw. I do not care now, not really. It has plateaued and on that I am certain. Well, I just wrote that I do not care, but I would care if it has gone up… I should probably check that one out. Goddamn.

So, anyway, I like a little flutter now and then, but I will not be taking any bets on the fact that I will be going in for my transplant in 5-6 weeks time. I am planning to go in for my transplant in 5-6 weeks time. I will be absolutely furious if this is not the case, but I am well aware that these things can change. I am aware of this because my treatment seems to be based on this principle. I have every intention at my next appointment to tell the Medically Trained People this. At my next appointment I want a date. I probably will not get one. At my next appointment I want a signed contract saying that I will be having my transplant and this will happen by mid August. I definitely will not get that. It is what I want however, some sort of guarantee that things will not change againand I will not be in a position where I have to convince myself that something I have no faith in, is good. Nobody knows how I will respond to my treatments, but I hope at some point in my life, I can reach a stage where there is some sort of rigid plan with my treatment. I would like to look more than three months ahead. Hell, let’s go crazy. I would like to look four months ahead.

Time will tell. A Medically Trained Person, who has absolutely nothing to do with my care said that there is nothing I can do about all of this uncertainty and I just have to let things happen. He is right of course, and I will do as advised, but come on, can somebody, anybody, just give me a break. I beg of you.

EJB x

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18

It’s gone down again, albeit by a measly point, but the paraprotein has gone down. I am still responding and I get to have chemotherapy pushed through my veins next week as a result.

I am not going to lie, I was anxious. I have spent my morning lying in bed looking at my phone, willing it to ring and preparing myself for the worst. I have the result now, so I can get up and party. By party, what I actually mean is baking in the kitchen whilst listening to middle of the road music and singing loudly.

Bliss.

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Twenty Three

Today is Results Day.

Paraprotein

To say I was nervous was an understatement. When I woke up this morning, I felt like I was getting up to get my GCSE results, and between you and me, I was disappointed with those. In preparation for today, I had somebody come with me to the clinic, just in case. In preparation, WM had bought me a multipack of Skips, just in case.

The actual result was an anticlimactic. My paraprotein is 23, down from 28 at the start of my last cycle, down from 40 since I started my treatment. In my head, this is neither bad nor good. I am pleased it has gone down, but I would have liked to have it fall below 20, just so I could say I have had a 50% reduction. At least it is working. A reduction is still a reduction and although this may be my last cycle, I could also have a further two cycles. If that is the case, I am only at the halfway mark. PADIMAC may have three more cycles to get its bum in gear. On the bright side, I now know I have the strength to take on all this cycle has to offer. Bring it on. I have food in my freezer.

Bloods

I don’t just get pricked for my paraprotein level. Oh no. Every three weeks, I have at least five blood tests, including five full blood counts and many other things. I am fortunate to have a Dad to explain these things to me, but I feel it is important to show you the gobbledegook. I tend to just look at the ‘L’ and ‘H’ in the far column. What the FBC says this time round is that my immune system is low, but I am not neutropenic. I am going back on the super foods.

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Pregnancy

This morning, with breath that was baited, I waited nervously to hear the word “negative”. Phew.

So there it is. And now I start again.

EJBx

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