Monthly Archives: November 2014

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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The Urine Sample

Every month, I have the humiliation of doing a pregnancy test before I can be prescribed my Revlimid. The humiliation is on two counts. The first and hardest is because we all know that I, in all probability will not be able to have the babies the natural way, if any way at all. I am all too aware of this. The second count as also on a personal level, and that is as time goes on with my treatment with it’s stupid side effects and expanding jelly belly, the physical act required to get pregnant falls further and further away from my grasp.

Every 28 days, when I attempt to pee into a cup, I am reminded of these things. No matter how many smiles I am greeted by when the form is signed to confirm that I am not pregnant, I cannot help but feel hard done by. I was so much prettier in 2011 and I’m pretty sure I would make an awesome mother. Just ask the dog.

Given the emotions it stirs inside me? I have to mentally prepare myself for the question I get once a month, because apparently the negative urine sample is not enough. ‘Is there any chance you can be pregnant?‘ No there bloody is not. I am a essentially a barren leper who cannot tie up her shoelaces. The one time there was a remote chance of a ‘no’, Mamma Jones was with me, so I lost the satisfaction of the truth and still said ‘no’ to save us all the embarrassment.

The thing with a myeloma clinic, granted I have only experienced the one, but I am sure it is an issue that all childbearing age myeloma sufferers on Revlimid or Thalidomide experience in all the clinics across the land, is that due to the age of your average sufferer, the act of doing the pregnancy test is never seamless.

The test itself can often be overlooked until after the appointment, and even if it is not overlooked, I still have to get the jar, do my business and chase down a Medical Trained Person in front of other patients to give my sample to. To me, it just highlights my pain. And the question I ask you is this, who really wants to see my pee? Probably not the five or six people waiting impatiently for their appointment.

To cope with, or dare I say, to avoid the harder thoughts associated with doing the pregnancy test, I have decided to make something of an entertainment from it. The entertainment generally requires me being proactive, when it comes to serving up my pee. Even if I am in private with a Medically Trained Person, I will make a joke out of having to do it. Humour as a defence mechanism? No way. Not me.

Two months ago, I had to interrupt a Medically Trained Person talking to another patient to ask for the pregnancy test, and for some unknown reason, the look on the fellow patient’s face was a picture. I wanted to shout at him, that yes, young females can get myeloma and yes, we also have a less than 5% chance of getting pregnant and yes, I am painfully reminded of this every month. I did not shout at him however, I just took great pleasure in seeing the embarrassment on the Medically Trained Person’s face. She does not know yet that I do not embarrass easily. I did not get any humour from this month’s test, so I am using this to remiss about the good times.

Completing the sample is a challenge in itself. Like the Crystal Maze or darts. I am not one who can pee on command, so I have to make sure I drink a sufficient amount of fluids well before my arrival at the hospital (for your information, I discovered recently that being well hydrated helps people to enter my veins also), and then, I have to hold in the liquids until the appropriate time. I have started to blame this act for my weight, something that is also captured every 28 days (the nursing assistant felt the need 15 minutes ago to point at my weight last month after I was weighed today so I was aware of the further gain). You may not be aware of this, but the menopause can weaken one’s bladder, so there was one occasional three months ago where I had to find somebody quick snappish to release the pressure.

And now for the biggest challenge, something that has become a game, successfully and neatly, peeing into the jar. I have never been able to do this. Not myeloma never, but in life never. I got close to it last month, but all I way say about this month’s attempt is thank goodness they have bucket loads of antibacterial hand wash.

This week is special, because not only do I get to confront my fertility demons today, on a Thursday, I also had to do it on Tuesday morning prior to a MRI scan. Well, I did not have to do a sample, I was just asked the question.

I do understand that it is a legal requirement, but sometimes, I would like people to realise that it is not just a tick box exercise to me. And, let’s face up, there are so many other things to wind myself up over on clinic day. So much.

On a lighter note, here is my pee. I can confirm that I am not pregnant.

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EJB x

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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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A Little Less Superstition

I have known all about the statistics of myeloma ever since somebody first removed a piece of bone from my body. They are statistics that I thought I had come to terms with and understood. As with everything else I can interpret as ‘bad’, I acknowledge it, and move on and then when I need to acknowledge it again, I do so and move on and that is how it goes. The issue at the moment is that I do not have a great deal to move on to. Myeloma wise, I am on a one way trip to an allograft stem cell transplant and this, my dear friends, I find absolutely terrifying.

I can pretend to not be scared by the 40 percent mortality rate and the various complications that can come with the procedure, but that pretence does me no favours whatsoever. I know this, because I spent much of the last fortnight of October bursting into tears as I spontaneously contemplated my own mortality, pretending that I was not worried by it. I believe I confused admitting that I have these thoughts were in someway admitting that I was not brave, which of course is not true. I am the bravest. I did attempt to talk about my fears, but it does really help members of my Support Network to think of my early demise either. The stock response tends to contain the words, ‘silly’ and ‘fine’ and then the conversation is shut down. I cannot shut down my own fears that statistically, it is far more likely that this could be my last Christmas than it would be for anybody else I know.

I have not lost complete control of my senses. Chill. It would be wrong to say that the forthcoming, on a date to be confirmed at some undisclosed time in my future, transplant occupies all my thoughts, but it is never far from my mind. It would also be wrong to say that I view the transplant as a negative experience, for I do not see it as such. Indeed, thinking of failure before the deed is done, could be seen as a jinx, if I was that way inclined. And to confirm;

I am that way inclined.

I did not know it, but my fear and the management of that fear, which I am told is completely normal, has manifested itself in superstition. Not just any old superstition, but overt, occasionally ridiculously, but almost always laughable and definitely without any scientific merit, superstition. Stevie Wonder might say that this ain’t the way, but what does he know? I am pretty sure that I am just being pragmatic and ensuring that I have covered all the necessary bases.

It’s just like taking my drugs…

It all started innocently enough. A few months ago, I was asked to consider doing something that I thought that if I were to agree to it, I would be saying that my treatment would fail and that, in a nutshell, I would die. If I wasn’t signing to confirm my early death, at a minimum, I was committing myself to a lifetime of complications much worse than those I experience now. The word ‘jinx’ was bandied around. A lot.

Since then, these thoughts have developed into something I could not have foreseen. I now see many things as potential omens. It is a logic that led me to purchasing a pair of shoes on my credit card, because they were too much of an investment for pre-transplant wear alone and my morals say that I need to be around long enough to pay of the debt. So you see? It was fine for me to visit the Russell and Bromley website. With that sort of mentality, I could really screw things up for myself.

It goes on…

This Christmas is nothing special. It’s just the same as another other Christmas. To say anything else would be, punch me in the face, pinch my nipple, condemning me to failure, sacrilege. In fact, I decided last week that it has to be called Just Another Christmas. No muss, no fuss. The only issue is, I am yet to decide whether this means I fight my Brother-in-Law for a Christmas dinner, because that is what I would normally do. Or, do I let him and Big Sister decide on how we spend Boxing Day, because I’ll of course, get to decide next year and for several years after . Just Another Christmas, remember? On the scale of jinxing, I’m not sure which route is the best one to take? It makes me feel quite uneasy.

I recently started keeping a log of all the films I see in a little notepad. The record started because I could not remember seeing a film I saw a year ago, but when I saw the size of the book, I realised that my transplant would have to be a success, because I had to be given the opportunity to fill the whole notebook. It’s a lovely little Moleskin in red by the way. For the first week or two, I felt quite confident about my new task. It was a confidence that started to fall away when I realised that there was a chance that I could fill the book before my transplant, and then, instead of it being a good omen, it became a bad one. I started the book on 9 October, and to date, I have seen 36 films I have not seen before. I am just under halfway through the book because I made the foolish decision to devote two pages per film. Foolish oversight.

A few nights ago, I found myself lying in bed fretting over what I had brought upon my house and I realised that I needed to introduce a contingency plan. Basically, I need safeguard after safeguard to ensure that everything goes to plan. Makes total sense right?

I decided that what I needed was a list of films to see that I had never seen before, or, as I am calling it, ‘Films to See in Life’. Notice my language here, there is an alternative name that would roll far more easily off the tongue, but my superstition will not allow it. I stayed awake, deep into the night compiling the list of Films to See in Life. As the list has been formalised in a word processing app, it means that I now have to complete it and I am fairly certain that it will take longer than two years to do so, for my list criteria does not include forthcoming cinema releases or random things I come across on one of the three streaming services found in my flat. The added beauty, inner beauty if you will, of the list is that I can always add to it, thus creating an inbuilt contingency should I find myself able to watch multiple serious films back to back, for days on end. I should add here that this scenario is highly unlikely given my current and future medication. If you do not believe me, try and follow the plot of Robert Altman’s Nashville after you have been awake for 24 hours and you are suffering from a hangover and then you’ll sort of understand what it is like to be on the Revlimid, Dexamethasone, Cyclophosphamide, MST and Diazapam cocktail.

I was once somebody whose beliefs were very much grounded in reality, but fear does funny things to a person. At least to me anyway. You all know that now and you can be mindful of it. Housemate is on board too for yesterday he bought me an early Christmas present (I actually think it was a late 30th birthday present) in the form of a Moleskin 240 page Film Journal for us once my little red book is full. Guess what?

I think it bodes well…

In case you were wondering whether this makes me mentally unstable, mind your own business. Sure, as an aside, I was slightly worried about it as a long term management tool, but I have been told that it is completely normal behaviour when one is in quite extraordinary circumstances that they have absolutely no control over.

Just do not tell me that everything will be ‘fine’. Make it ‘fine’.

EJB x

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The Cleaner

It may surprise many of you to learn that despite my current financial woes, I continue to employ the services of a cleaner. The cleaner comes fortnightly, and her services are paid for out of my disability living allowance. It is a necessary extravagance and it is an extravagance that I look forward to and loathe in equal measure.

My excitement at having a clean house at the end of a three hour visit is obvious. The awkwardness that I encounter for the duration of that three hour visit is almost enough to get me on my hands and knees attempting to dust the skirting boards. Almost, I cannot get on my hands and knees to dust the skirting boards. There has been an empty bottle of water on the floor in my kitchen for two days, which I have been unable to pick up. I really hope she spots it today. Imagine what would happen to me if I partook in continuous exercise below the waist. Imagine indeed… At best, I would be a moaning minny. At worst, I would be on the Oramorph demanding another X-ray.

Let us face it, I also have a strange middle class, but on benefits, guilt of paying somebody to come and do my dirty work, whilst I lie on my sofa watching TV. I am lying on the sofa as I type this whilst the cleaner cleans. She’s two metres away from me making a vigorous scrubbing sound by the kitchen sink as I snuggle into a cushion tapping into my iPhone. I should really move into my bedroom now, but my back hurts, so I am multitasking, working up the courage to stand. She does not know why I am on the sofa snuggling into a cushion. What must she think of me?

A fortnight ago I made a point of taking my medication in front of her, and left a few boxes of drugs out in my room, so she could guess there was more to me and my story than a fat, lazy and inept housewife. That is what having a cleaner makes me feel like, apart from the housewife part. I am no a housewife, as the rotten vegetables in the bottom of the fridge are a testament to.

There are days when I would love nothing more than to be able to clean my own flat. I am in no way exaggerating. I am not saying I enjoy the act of cleaning, I would just like to be able to do it. For well over a month I have needed to adjust the valence sheet on my bed, it is a task I yet to complete because it involves lifting my mattress and I struggle to lift up my Le Creuset. Consequently, I feel like my bedroom resembles a squat with it’s exposed divan and collection of syringes.

Life is tough. Real tough.

My cleaner does not know that I get up early before her visits to make sure things are as tidy as I can make them, that the bedding is clean and dry and the dishes are put away, nor does she know that these activities tire me. She does not know that I do a disproportionate amount of dishes in my flat to make up for the fact that I cannot empty the kitchen bin.

Nobody tells you that this is a side effect of myeloma; uselessness.

I do feel quite pointless right now. Thank goodness I know that I make the mess and dirt in the first, otherwise I would be lying here questioning my very existence.

I just want to get under a blanket and snooze. Goodness knows how I am going to manage this in a fortnight’s time when I am crashing on my steroids and unable to get out of bed. The experience would be so much worse if I am in my pyjamas. There is nowhere to hide.

What is the etiquette when nature calls when it does not call that often? Heavens above.

On the plus side, for all the awkward and critical feelings I have right now, I know that in an hour’s time, my bed will be changed, my flat will be clean and there will be a lingering smell of bleach.

Before that happens, I have to get over the embarrassing issue of payment. I believe some people would refer to my concerns as a ‘first world problem’. My riposte would be, ‘myeloma’.

EJB x

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The Do-Gooder

Many people can be forgiven for being under the impression that I spend all of my time, idle, lying on my sofa neglecting my looks and my blog, whilst wallowing in self pity. The truth is, that only accounts for 80 percent of my time. The rest of my sick leave is spent doing a myriad of exciting things that one day, I will find the time and brain function to tell you about. In the last week however, I have managed to devout approximately 10 percent of my energy to altruism. That’s right, altruism, for I, Emma Jane Jones am altruistic. I definitely did not do the things I am about to tell you about, so that I had something interesting to tell you about. I did them because at my very core, I am good and, I am selfless.

You have all heard the saying charity begins at home. Well in the last week, charity for me has actually meant thinking about me and only me. That’s home right? There has been a great deal of reflecting and delving into my personal world of myeloma, producing 2666 written words, one bout of insomnia, a photo shoot and the ability to speak to a room of medically trained people whilst wearing leather and having a hot flush.

I am yet to conclude whether these exercises have been healthy for me, but that is how I know that I am really an altruistic bunny rabbit requiring praise and awe. I have done two things for charity that you could say were difficult for me to do. They were difficult for me to do. On here, I only really talk about my current feelings. I rarely attempt to see a bigger picture. However, in two different ways, for two different charities, I have done just that. I have recounted and explored my journey from when I first felt a tinge of pain in my back to where I am now, which in case you were wondering, is called limbo. I rarely look back at my treatment, because my focus has to be going forward, and getting through the day when I do not know what forward looks like.

Looking back, firstly in words for Myeloma UK’s newsletter, was overwhelming. I did not expect to be overwhelmed, but I was. I don’t need to recount my considerably over the word limit story for you now (for that will indeed come), to say that it invoked some emotions that I would rather not have felt. It was one thing for me to recognise my stoicism and I do, it is quite another to see perhaps the mistakes I have made since I was diagnosed and to relive some of the nastiness I have encountered along the way.

The activity was accompanied this morning by something else that I would describe as ‘challenging’, but challenging on the most superficial level. This morning, in my flat, I, along with the dog, was the subject of a photo shoot. Not just any old mobile phone photo shoot after a few brewskis; this one featured an actual tripod.

When 80 percent of my time is spent being idle, the physical expansion of the my body is no surprise and being the main subject of any photograph, is now, not what I would describe as fun. It’s the end product that puts me off. Housemate however, seemed to find my posing quite funny, especially when I did so in front of some meringues. That’s right, meringues in a tin.

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It’s fine though, I think the difficulty I had in producing a genuine smile, will just be interrupted as constipation. That would be no lie in any tale about myeloma treatment.

The second of my endeavours this week, was for the little known charity fond of a coffee morning, called Macmillan Cancer Support. Some weeks ago, I was asked if I would be willing to share my story with some of their helpline staff, who were travelling to London to do some specialist training on myeloma. Maybe this is not that altruistic, but I was so pleased to be asked, I could not say no. In fact, I think I almost looked forward to it.

On Wednesday afternoon, I made my way to Huntley Street and sat through one presentation by a Medically Trained Person on myeloma treatment and escaped before a second person delivered one on stem cell transplants. I did not think my mind was strong enough for that, when an hour later I was to address the room on my many side effects from before diagnosis to my present. And address them I did, warts and all. Beforehand, I had discussed what I was going to say and I thought about it many times over and I almost remembered everything I had planned to mention. I did forget to say how my forgetfulness causes much frustration and difficulty in my everyday life. Go figure. I did not forget to talk about depression, isolation, friends, fertility and faeces. As you can imagine, it was a barrel of laughs. It was also very honest.

The person who planned the training said that I provided a human face to all the technical jargon they had sat through earlier in the afternoon… I am not one to toot my own horn [often], but I think my comments were well received, that, or they just felt sorry for me.

It’s Friday night now, and I have decided that now is the time to revert back to looking out for Number 1. NΓΊmero Uno. Me. I am tired now.

Who knew that talking about oneself could be so selfless?

I have always wanted to be a do-gooder. If I was not superstitious of having a bucket list, I could tick that right off. Um, I do not have a bucket list, so I will just say that it feels so much better than a monthly direct debit… Hang on, does that make it just a little bit selfish?

EJB x

P.S. Did you know that the people on the Macmillan helpline are trained nurses? It’s true.

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