Tag Archives: strength

I Don’t Like Mondays

Tell me why?

Mondays were once upon a time reserved for me not wanting my weekend to end and my working week to begin. In my current treatment cycle, mondays represent something else entirely more negative and I have to admit that I am no longer a fan of them. Gone are the days full of possibilities of the week ahead and in, well, you’ll see…. There may have been a time in my past when I relished a Monday morning. I liked doning a new outfit for my working week that said ‘I’m coming to get you’. Now, that outfit I find myself in is usually my baggiest pair of pyjamas that I will wear for two to three days straight that says something more akin to ‘I’ll let you take me’.

To explain things more fully, I should probably explain that I was not prepared for the start of my new treatment. As something of a veteran now, I was cocky. I thought that I would start my treatment on a Thursday evening and anything to be experienced over the proceeding three weeks would be something I have experienced before. I strongly believed that I would find the treatment to be m easy, simply because I had done it before and lived to tell the tale.  

Unfortunately, my memory is selective. I had forgotten that in the lead up to taking a mountain of Dexamethasone and daily Revlimid tablets, treating my bowel is crucial. I forgot just how horrible it is not knowing when I am going to be unwell, and the frustration I feel when I cannot get out of bed , or successfully count up to 20 and have to watch from the sidelines as my friends live their lives and I lose my independence. During my first cycle, all of this came at me with aplomb. 

Much, much quicker than I had anticipated or hopes, the drugs took over and I could not get out of bed for two weeks. In these darkest of moments, when all I was was my medication,  confidence zapped, I could not see any longevity to my treatment and my life. All I could see was the promise that I would be taking medication indefinitely, unable to earn a living, both outcomes fail to offer me any reasonable quality of life. I’m not asking for parties every night and a warm bodied lover to keep me company, I just want some consistency and a life I can compare with my peers. Sod waiting for a monday to roll round, Cycle 1 made all the days simple merge into each other and made me feel like bother more than a thin veined puppet trapped in the walls of my flat, losing whatever looks I had left, becoming the charity case people contact out of duty. 

I know. I can feel your eyes rolling. 

As my current treatment is fairly similar to previous treatments, in my first cycle, I opted to take my steroids in one go over four days. My previous experience told me this would give me the most free time in the long run. Due to various factors, I ended up doing this after a week of feeling run down rolling into one long period of ineptitude, as well as m swallowing up my week off medication. That first cycle, was without a doubt the worst cycle I have ever experienced since diagnosis and I haven’t even mentioned some of the, erm, smellier side effects.

With the benefit of hindsight, everything about Cycle 1 was a mistake. From my laissez faire approach to it, to the lack of food in the house that could be cooked in the microwave or with a kettle, to my lack of forethought, to my belief that employment was possible, to failing to realise that three stem cell transplants would not have taken their toll on my already delicate body, to me dwelling on the long term impact and disrespecting the now, and mostly, my belief that nothing had changed. Despite all my inner talk about giving up, I believed I was strong and I could manage it with poise, skill and a smile. 

I was wrong.

I needed Cycle 1 to give me multiple slaps in the face. It made me slow down. It made me fill my freezer. It led to multiple trials of laxatives and antiemetics and I think on that front, we could nearly be there. Wherever there is… 

By Cycle 2, the funding for my Ixazomib had come through, that’s oral Cilit Bang between you and me, which once again meant some tweaking to my schedule was in order. When one takes 22-43 tablets a day, that means some tweaking. Firstly, and most crucially, the Medically Trained Person told me that I was no longer allowed to take my steroids in one go. A development that did not please me at all because I like to get the pain out of the way even if it does mean my mouth will taste like tin for a fortnight, my glands will be swollen for a week and washing my crevices becomes a luxury. The lovely doctor, who is not in the least bit scary, softened the blow by halving my monthly dose of Dexathasone. In case you were in any doubt, I live for these small mercies. 

Unfortunately, for the Cilit Bang to work at its optimum, apparently, it needs to be taken weekly, on the same day as the Dexamethasone. Can you see where I am going with this? I have chosen Monday as that lucky day. 

Monday is now known to me and my family, as Heavy Drug Day. My cleaner, who speaks very little English who comes every other Tuesday must call it something else, which probably includes the Russian words for ‘fat’ and ‘lazy’ as I move from one room to the other to carry on sleeping whilst she cleans around me.

In the last few weeks the perverse nature of my treatment has dawned on me. I wake up on a Monday, I could be in a brilliant, jovial mood on that said Monday, but ultimately, I know that at some point that day I will take a cocktail of medicine that will result in me seeing my insides. If he is in the right place and I am too slow, it will also result in the dog seeing my insides. One day, he ate it up as a healthy snack. And that is what my day becalmed. No matter how I feel when I wake up on a Monday, not matter what time I take the medication, I know how the day is going to end.

Such is the doom I feel, my apprehension now creeps up on a Sunday night. The knowledge that come what may, I am going to make yourself incredibly ill, hardly puts me in the party spirit. Most Mondays, I feel like a fool. I feel like I have been tricked in to taking part in some sort of top-secret military physiological experiment to see how guilible people can be fooled into delivering their own torture. It will make you better they said. It will. Now take all the drugs and every single supporting medication you have to go with it. Let it sit in your stomach and churn. Churn. Churn. Then you will see your family again.

The most brilliant part of all of this, is that it isn’t even the Monday when the worst of the side effects hit. It’s the Tuesday. I could have called this blog ‘I don’t like Tuesdays’ but the truth is I find the anticipation of what is to come and the knowledge that I do it willingly by myself, far more ghastly than what actually happens to me on a Tuesday. 

In case you are wondering, in the early hours of Tuesday morning, I will be awoken from my uncomfortable slumber covered in a light layer of sweat, and I will have to quickly get out of my bed and run to the toilet where I will be sick. That is called Vomit Number 1. I am then likely to be vomit up to four times more by lunch. The nausea will last all day. I will feel so weak that I crawl back into my bed and half sleep, half will the day to be over for the entire day.  

Housemate informed me yesterday, that  I do not help myself in this circumstance. I avoid liquids to rehydrate myself because it usually just ends up coming back up again. Not drinking adds to the overall feeling of lethargy and I do not eat. Not eating tends to make me feel even more nauseated and thus the cycle goes on. By nightfall, because I have spent most of the day in and out of consciousness and smelling like a rotting corpse, I struggle to sleep. My body is in all sorts of pain, from a sore throat brought on by my multiple trips to the toilet bowl, a suffering spine from having to run and crouch at said toilet bowl, all mixed with an indescribably horrid steroid comedown. 

It goes without saying that this means Wednesdays, well the Wednesdays I once knew, no longer exist either. I might not be sick on a Wednesday, but I will be weak. It will be unpredictable. I might be able to go to the corner shop for some fizzy water, I might even be able to drink the fizzy  water and follow the plot of a movie, but there is no way of knowing just what my capabilities are going to be on that day or indeed, on the the day after that. With any luck, I will get three reasonable days before it has to start all over again on the following Monday. 

From what I have managed to understand, the level of sickness I get from one tablet is the normal side effect. According to the leaflet that comes with the heavily controlled Ixazomib, I may experience some nausea after taking the pill, but I am definitely at the higher end of the vomiting spectrum. 

I have tried to change the time I take the pill, I have used five different antiemetics, in various combinations and yet the vomit is just as ferocious. The Medically Trained People tell me it is something I have to deal with. Do not be alarmed, I am paraphrasing, it was put to me in a nicer way than that, with understanding and empathy, but it does not change my circumstance of disliking Mondays. For the foreseeable future. 

EJB x

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Woe is Me

And so my thirtieth birthday has passed by, and with the beauty of hindsight, I can tell you that it really was not that bad. It is important for me to keep you updated on the fact that I had a whole week of feeling special and loved, because my last blog on the subject was rather negative. Also, everybody just loves a boaster. I am a boaster.

After I expressed my distaste for my birthday and said how it reminded me that I was going to die and miss out on a future, I received a comment on my blog telling me that I should stop with the ‘woe is me’ comments.That was not the opening comment, oh no, I was profoundly told that my life is what I choose it to be and in order to fight myeloma, I had to ‘start with a decision to do something’. The gifts just kept on coming, and I was advised to not feel sorry for myself, and to achieve this, I should live my life by being active. By ‘active’, the suggestion was that I could ‘walk, run or bike’. It concluded, inspiring creators of memes everywhere, by saying a ‘death sentence’ means that I have time to ‘live before X day’. And so, I was ordered to ‘live it’. Exclamation mark.

Inspired, enlightened and motivated by the kind guidance a lesser person would consider a sales pitch, I decided to avoid my blog for a few weeks to allow myself the chance to ‘live’. I mean really live. I have after all, spent every day of the last two years in a self indulgent, wallowing pit of despair, not affording myself the opportunity to really live. The advice, both insightful and medically responsible, came with a slogan of ‘Nutrition + Fitness = Health’. POW and WOW.

I acknowledge that my last blog about turning 30, was not something one would read to a four year old as a bedtime story. It was angry and pessimistic. It was also needed. They were the thoughts I had in the lead up to my birthday, and I needed to voice them by writing them down and then dumping them into the internet ether. It is how I manage all my negative thoughts and it then allows me to see the positive. After I pressed publish on the morning of the 24 May, do you know how many other times I have entertained thoughts about my premature death and never born children? Not once. Not at all. Not even. Those thoughts are hopefully not to be seen again until the 17 May 2015. With the thoughts banished, I was able to just enjoy the things I used to love about my birthday. Enjoy it I did, and it lasted for 9 whole days.

‘Living’ is grand. I spent the afternoon of 24th May until the afternoon of 27th in Berlin. There, in lands all so foreign, I was able to do my best impression of a middle aged American tourist whilst the people I travelled with did their best impression of something else entirely. My eyes, once again, were able to see things they have never seen before. I relish that, more than jogging. As much as my innate pessimism loathes me to say it, I had fun. Boy, did I walk straight into ‘living’.

Inevitably, in the immediate days after my return, I required rest. I rested because I felt sorry for myself and not because it is an essential part of my ability to function. I was tempted to go on a bike ride, but I have been limited to four five minutes walks a day by the people who are medically trained, so I chose sleep instead. The rest days also involved some working, because I am hell bent on giving up and I only need money to fund my Netflix account.

Sandwiched in between the birthday fun times, was a doctor’s appointment and a dose of Velcade. Velcade as you all know, has such positive side effects, that any one intent on giving up on life, will benefit from intense neuropathy, fatigue and nausea. I do not go every other Friday to have a dose of Velcade and feel this way, because it will buy more more time until X day.

In the days after my rest time, I was treated to a myriad of gifts and fun and love. I had a good turn out for my birthday drinks, which was probably just the way in which my friends decided to tell me that I needed to ‘live’ more. I felt spoilt and put it simply, I loved it because I love me. There is nothing better at making one feel wanted in the world, than positive attention. Lots and lots of positive attention. 💖💖

It has been two weeks since I said goodbye to my birthday for another year, and in the time since then, I have once again fallen into the pit of self pity that is my myeloma consumed life. My self pity looks like me working, the occasional act of socialising, a Q&A at the BFI and Mum Love. I have been incredibly hard on myself.

To be clear, there is absolutely no way in which I feel like I have not been ‘living’ or trying to live, nor do I feel like there is any decision for me to make. I will say this once, I am incredibly proud of the way in which I have conducted myself since I was diagnosed. I have managed every change, every hurdle, every bunch of fives, in a way that works for me and I hold my head up high as a result. The hurdles, by the way, includes when it has become apparent that I can no longer ‘live’ like I used to. Occasionally, I will have a bad day, or if last autumn is an example, a bad few months. When the bad mood wafts over me, it is not about me being melodramatic, it is me being truthful. I have bad thoughts and the worst thing to do is to pretend that they are not there. I might, for example, have some really bad thoughts about the fact that I cannot, for medical reasons, walk, jog or cycle or even worse, have thoughts about being told that doing these things would improve my ‘life’. I might have to voice this anger, but once I have, I will move on until the next thing happens that tries to pull me down. I will manage that in turn.

Maybe it is a flaw in my personality, but I will not accept any criticism on how I behave or how I act on the subject of myeloma. It is life and I will deal with the daily reminders however I see fit. I made my decision a long time ago, and that decision was to do exactly what I am doing. I have made concessions, I cried in my bed and contemplated my death. I have also loved and have been loved, I have laughed and smiled, I have found fun in the mess and recently, I have seen places not in my Bermuda triangle. One could describe the above, both the good and the bad as ‘living’, but if I were to do that, I’d probably vomit all over EMan.

All in? I do not think I have done that badly. Also, I cannot ride a bike.

EJB x

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Armour

From the point I was diagnosed I entered a strange sort of twilight zone in which, whilst my body could not be protected, my mental state was, or at least defended. Personally, I put up several barriers to protect me from harm, and others, well, they were very kind. It was journey, and in remission, I find that I am running on fumes. It’s a new twilight zone.

Any personality flaw, any indiscretion no longer exists when you have cancer, at least, nobody makes you aware of it. You become angelic. Any previous flaw, any previous negative in your personality is erased. One may be petty, one may be needy, but when you have cancer, it’s forgotten, because having cancer, and being treated for it is difficult. Such a tragedy creates amnesia and we, cancer patients that is, become the most perfect people to have ever walked the planet. Mos def, mofos. We are definitely not human. We are special. We are special because nobody deserves this, especially the nice ones.

Our bravery, thus needs kid gloves. We need special treatment and we need protection. It’s a thought and feeling that is steadfast. We’re brave and we’re special and we are respected. Cancer patients cannot and do not have flaws. Just look at a high profile deceased cancer sufferer, may she rest in peace. Our sins are forgotten and we are enshrined in kindness and support.

It took a long time for me to get used to people treating me differently to the way they treated me before 17 August 2012, but acclimatise I did (apart from the head tilt and when speak talk to me like I am seven). With the beauty of hindsight, I see that I needed it. It became my armour and offered some respite from the negative thoughts in my head. I needed people to be considerate to my situation, I didn’t need them to be consumed by it, but I needed, and appreciated the understanding I got. I see now that it empowered me. The lengths people went to, to make me feel like me, were, in fact priceless. I see that now.

To the untrained or uneducated eye depending on how you look at it, I do not have cancer anymore. I am in remission. I have gone back to normal. I am not EJB, I am EJJ again and only that. Such people are wrong of course, I still have cancer. I may be in remission, but my cancer will come back. There is no may about this, it will come back and that is something I am still trying to understand and struggle with.

Since the news spread amongst my adoring public that I am in remission, I have seen a shift in attitude towards me. The lovely, permanently frilly and overly kind demeanour I experienced for 15 months has been replaced by something else, perhaps something more honest. I have discovered in remission, that one does not get the same level of comfort and support, associated with full blown cancer. You are no longer the brave old soul, fighting for the greater good. The respect is no longer universal. The protective bubble of niceness shrinks. Whilst the majority of people will understand that you are not a benefit cheat, tricking the public out of their well earned tax Sterling, some, will treat you like you have robbed them of something, but you will not know what.

On a harmless level, I have noticed people thinking that I will automatically have the energy levels I had once before, that there has been a flick of a switch and now everything can go back to the way it was before My Myeloma. It is an approach that does not help me. I understand the logic in terms of ‘ moving on’, but it does not help my recovery to be treated like that 15 months did not happen. Those 15 months left a mark, and not a very confident one.

Sadly, I have also discovered that some shifts in attitude are not as easy to get over. It seems that for some, the word, ‘remission’ has been a chance to lift whatever facade has been in place since I was diagnosed. Remission means the public does not have to be nice to me every minute of everyday, and that I can be treated like everybody else. I have seen a negativity appear that I am no longer acquainted with.

I like to think that most people who lived to the ‘R’ word, get there quicker than I did. For those lucky types, they have less time to become accustomed to the level of treatment of which I first spoke, from those around them. They only felt like princesses, or princes if I am catering for all, for a period of months, whilst their lives were irreplaceably shaken to the core . I, on the other hand, had 15 months of such treatment and 15 months to get used to it. That 15 months removed my amour, but had grown pretty thick during my 20s.

My Remission returned me to the real world, but without the protection I had when I was last in it. It’s a scary and uncertain place.

The truth is, I am not always a nice person. I can be moody, I can say the wrong thing, like the sound of my own voice and I hold dear my own opinions. At least that is what I recall from my pre myeloma life. My remission has forced me to look at this because other people have deemed it an acceptable time to remind me. Yet another thing for the paranoid treasure box. This reminder, can also be viewed as payback, and it comes in many forms. It could come in the form of a pack like attempt of silent treatment also known as middle aged bullying, or it could come in the forming of shouting, or in passive aggressive text messages. All these things, have made me reflect and made me wonder whether, I deserve to be kicked when I am down, whether I deserved to be in remission. Trust me, this is a black hole.

With or without cancer, I am human. I have good and I have bad. I would like one of these more than the other, but I am sure, on this subject, beauty is in the eye of the beholder. Personally, I have spent the weeks post transplant, reviewing my good and my bad, because that is what I need to do and am expected to do by all those who supported me during my dark times.

It’s a path full of dead ends. I am never going to be satisfied.

I do not understand it what has happened. I do not understand that remission was some sort of truth serum. All the anger or nastiness that has come my way post remission confuses me. It makes me doubt myself and how I managed being diagnosed and being in treatment. In my fairytale head they could be taking their anger at myeloma out on me, but that would be delusional. The truth is, as much of a leap as this sounds, I feel like this negativity changes the journey I have been on. I feel like I was lied to and I feel like I lied to myself when I thought everybody cared and supported me. I feel like it takes away the success of my remission, and it diminishes the hard work it took to get me to this point and the reasons why I fought so hard to get here.

It also represents a deep misunderstanding about how difficult that 15 months was. I did not get here intact, and I think that is punishment enough. Not knowing what ‘here’ is, is also a bitter pill to take. I do not not need to be punished again. I want to celebrate, but instead, I feel like I am losing a battle.

I know that my world cannot be sugarcoated forever, but I was unprepared for the change that has come. There isn’t a Macmillan leaflet about it you see.

It has left me feeling weak and I am not sure when I will be able to get back on my feet to metaphorically kick all my haters in the nuts, and what I mean by that, is not let it bother me. Right now, I would not say boo to a goose.

EJB x

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Acknowledgements

WARNING – This blog contains some uncharacteristic musings

I have forgotten to do something. It is not that I have forgotten to do something exactly, it’s just that I do not know how to do it. I want and I think I need to express my gratitude to my people for carrying me through the last 15 months. I know that I would not have been able to get to this current point, this remission, if it were not for the many people working away behind the scenes. It sounds trite perhaps, to say that I would not have been able to do it were it not for the support I have received, but it is true. In case you were wondering, this is going to get overly sentimental. Get a bucket.. Sure, I am
frequently pleased when people congratulate me on my strength and stoicism, but that it a facade. Any face I put on, or actual strength I have, derives from the people I have had and still have around. I have doubted it, and I have doubted them, make no mistake of that, but it is true. I imagine it is a feeling similar to the feeling the historical character Harry Potter had when he fought the evil Voldemort with his dead loved ones standing by his side. Like that, only my loved ones are not dead.

It does feel somewhat odd thanking people for something that is not over. I just have a time out, and I will continue to struggle and wobble over the myeloma mountains. I will have to continue to draw strength and perspective from those around me for as long as I have left, because the myeloma makes it so. This acknowledgement then, really is just a timely reminder to say that I still need you; it is attention seeking really.

I would be the first person to admit that My Myeloma has not been an easy ride for those around me. It has been hard and at times, traumatic. In case you were wondering, this may include exaggerations too. As much as I tried not to make it so, My Myeloma became the focus of all my relationships. One friend told me recently that people, like me, needed a break from myeloma and by that, they occasionally needed a break from me because the myeloma dominated so much, for so long. Now, I might not whole heartedly agree with the logic, but I understand the sentiment. Myeloma is tiresome. Supporting a weak, depressed sick person, or patient if you must, is tiresome and it is not always fun. I like being self obsessed more than the next person, but not to this degree. People have been there for me, more than I have them and this upsets me greatly. I really did try to make this not the case, but it was inevitable. I need to acknowledge in a forum other than in my head, that My Myeloma has made me less of the friend I wish I could be.

And yet, I look up now, and people are still here and for the most part, I really do not know why. My relationships may have changed, but there is not one person who was here 16 months ago, who is not here now. In fact, I feel like I have picked up a few extras along the way. Say what you want about myeloma and I feel like I have said everything, it really does bring people together. It also makes you feel as lonely as hell, but this is a nice blog. I look at a lot of people now and my internal monologue says slushy things that only I should hear, whilst I fight a desire to hug them tightly.

I do not know how to thank people for sticking by me. Prior to My Myeloma, I rarely expressed my feelings towards others, in anyway but my presence. I believed that my loyalty was enough for my friendships to endure. It may still be enough now, but My Myeloma has made me lose perspective. Medals would be too much, right? This blog is too much, right?
I considered thanking people individually, but then I remembered that although I have a cancer with no cure, doing so, telling people individually what they mean to me, would embarrass me, and I dare say it would embarrass them too, and I really should not be drinking the amount of alcohol required to lubricate those conversations. I thought about listing them on here, explaining the individual role they have had in making me get out of bed, but that too would not have worked, because inevitably I would miss people out or over thank one person and not another, thus causing an argument over something as pure as a Forever Friends bear, and as one friend pointed out at some point during this journey, friendship with My Myeloma and me is not competition.

At times during my first chapter I have felt let down, misunderstood and alone; and I have been confused by absence and silences. Now, however, the overwhelming feelings towards my family and friends are positive ones. I truly could not have done it without you, from your grand gestures to daily presence. So, please enjoy, my thank you;

I thank you for all of it. I thank you for not running away when my heart turned from stone. I thank you for phoning me every day and being my second mum. I thank you for being my mum. I thank you for understanding the medicine. I thank you for letting me be mean to you. I thank you for the sacrifices you have made. I thank you for always knowing exactly the right thing to say, and also for not knowing what to say. I thank you for waking me up every morning and being a pillar of strength for me even if you did not know that is what you were doing. I thank you for telling me when I was being an arse and shouting at me when I do not listen. I thank you for being normal and treating me normally. I thank you for coming to the hospital with me for treatment or waiting with me for my transport. I thank you for loyalty. I thank you for buying me milk and walking it to my flat. I thank you for offering to do anything. I thank you for force feeding me soup. I also thank you for all the cooked dinners. I thank you for all the books you gave me, that I have still not been able to read. I thank you for not letting a bit of myeloma and chemotherapy stop you from telling me off for over filling the bin. I thank you for playing Words With Friends everyday. I thank you for taking my mind off it. I thank you for taking me out. I thank you for always coming to me and sitting on my sofa for hours. I thank you for cheering me up. I thank you for my beautiful television. I thank you for all the legally acquired viewing. I thank you for showing me that family is important and I thank you for making your presence known. I thank you for continuing to ring despite me never answering my phone or returning your call. I thank you for reading the blog. I thank you for changing my bedding and hoovering my room. I thank you for taking me to the football. I thank you for letting me be petty. I thank you for listening. I thank you for acting as a protective barrier in a crowd. I thank you for everything and anything I may have missed above.

Most of all, I just want to thank you for being there, in all your different guises, in all your different ways. I also, most vehemently, ask you not to go anywhere. In case you were in any doubt.

I am very pleased to have met you.

Now, if you excuse me, I think I have to vomit.

EJB x

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Share and Care

The land post autograft transplant, when one went into it with a paraprotein level of 20, is a strange, uncomfortable and rather traumatic one. I doubt that unless you have gone through it yourself, you are never going to really understand what it is like. I know, beyond any shadow of a doubt, that unless you are me, which is scientifically impossible, you would truly know what this period is like for me.

I spent eleven months working towards my transplant. Living within each cycle of treatment and managing my new treatment after the Bad Day, because I was working towards my transplant. The transplant was the goal, and prior to it, I had to get through my treatments, week by week. Now, in the post transplant haze, I am left waiting for something and I am not sure yet, what that something is. I have until November to wait. In November I will find out whether my next step is to do nothing, go back on to VDT/VTD or have another transplant involving a donor stem cell. I do not know what will influence which.

Right now, I do not have an outlook post November. I do not know what my life is going to look like post November. I still cannot plan a bloody holiday. Working towards my transplant, I expected normality after it, but reality says that this might not be the case. I knew it would not be a magic plaster, but it has not stopped me from being disappointed with the reality. I have known this for a while, but right now, it is finally sinking in that this still might not be over, this volume is going to be a tomb and there is a chance that this will go on and on and on, until I stop. When anybody tells me something different, like all will be well in a year, I want to scream at them and say that we don’t know that yet and let’s face it, I want them to shut up. I don’t do that of course, I put on a brave face and carry on until I am alone.

This period that I am in, feels different to anything I have felt before. I am acutely aware of everything that is bad about myeloma, not that there is anything good about it mind. I want to say so many things about how I feel, about my fears, but within My Network, with the exception of my family, I have not said anything because all the way through this marvellous journey, I have been strong and I have been stoic. I may have had the occasional blip, but, mostly, I have carried on with what I had to do at the time and I have never broken down. I have been told by the people employed by a charity to support people like me, that it is usual at this time, that people begin to struggle with the status quo and fret about the future. I am doing all of that, but it is isolating because nobody understands it. I am expected to be stronger. I am expected to be rational. Somebody said to me the other day that I am a victim of my own positivity, perhaps that is paying to much credit to me, but at times I do feel like that. My behaviour up until now, I suspect, makes it difficult for people to comprehend the struggle I am in. Not everybody wants to hear it. I had counselling the other day, and in these things I tend to have the occasional epiphany because I am not in conversation with myself, and I said that I am frequently being asked how I am, but I think few people actually want to hear how I am. They want me to be better and well. It’s too difficult to hear anything else and anything else goes so strongly against my character. What I feel hardly fits into a text message.

How much should I share anyway? I have lost an ability to know how much information is too much information? What are the costs of sharing? Big Sister pointed out that whilst My Myeloma is my own, it also belongs to others too, and she got me thinking whether my approach can be selfish? Is sharing selfish? I do not know how people feel about my diagnosis. Is saying I feel down enough? When does sharing personal thoughts become too much?

Do not get me wrong, some of my stoicism remains. Indeed it does. I am getting out and about and smiling after all. I am not constantly wanting to break down and talk about mortality, a stolen life, and infertility, but I want to feel like I am able to should I need to, and people will not run a mile if I do. I do not always want to talk about it either. For most of the time, I absolutely do not want to talk about it. I want to be to be able to say I feel let down, abandoned or jealous, without it being an attack on my character or a reason for people not to see me. I cannot help the thoughts, they do not feel like my own and I beat myself up over it. I want people to understand that and show that understanding to me. I do not need to chin up, it is not sufficient. I need the opportunity to talk. Again, I was talking to my counsellor and I surprised myself by crying whilst recounting a message I received from a friend, which showed some understanding and crucially, patience. I need patience too. In short, I want to be cut a bit of slack.

I fully acknowledge that this whole thing might not necessarily make me a hoot to be around. I get that it could be a chore. I get that I cannot articulate it and at times I may become a passive aggressive female dog. I get that this sounds selfish. I get all of it, but I need the slack. FYI, These fears are just some of the things I think about now. I am aware that this behaviour and talk may drive people away, indeed, I was warned of this fact. I am not going to talk about it over a post work drink, but it goes back to me knowing that I could if I wanted to, and it is from there that the isolation stems. Boom. Insightful.

This is what I need now. I need understanding, patience and slack. I have been assured that this will pass, it may even pass by November, who knows, I’m a strong gal.

The truth is, I am not strong enough to go it alone.

I don’t want everybody to become my counsellor, that would just be awkward. I want an army behind me. I have an army behind me, however, in this post transplant world, I have lost sight of who does what.

EJB x

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Operation Build Up

Building up my strength is no walk in the park, for I would not be able to go for a reasonable walk in a park. Clearly, it is comforting to know that I am now in a position where I feel like I am ‘building myself up’, but it is more difficult than I anticipated, in the various scenarios I had in my head prior to my transplant. For example, I did not envisage that I would find it just so difficult to motivate myself to wash, and think about it, I don’t even have hair to wash.

Last week, I left the house three whole times. That’s right, in seven days, I left three times. Thankfully, there is a bit more space here in Mamma Jones’ house for me to wander, than there is in my flat. That benefit is balanced by the fact that in the working week, I am alone between 08:00hrs-18:00hrs, bar two pedigrees including one who actually likes me. When I am tired, this does not matter, if I get a window of energy, it does for I am trapped. The beauty of ‘building myself up’ is that I cannot predict when I will have a window of energy. There is no rhyme nor reason to it, and for that reason, I am reluctant to make plans (disappointing others hurts my forehead). One minute I could be lying in my own filth and the next, I am able to the my times table once more whilst simultaneously leaving my bed. The windows do not include cartwheels just yet.

As part of my recuperation, I did consider that I would have lone windows and I have activities for these. These activities are productive, but whilst they are productive, they are nothing like me crossing the threshold and entering the big wide world, which I cannot do alone. Getting dizzy next to the River Welland just would not do. Doing things in the outside world, has a different response to my body. I described the sensation to a friend at the weekend; for every two hours of activity in the real world, I can guarantee needing to spend an exhausted eight hours brain dead and horizontal as payback. My experience, thus far, is that I can feel fine and dandy one minute, and the next, well, I just don’t. Inconsiderately, the fatigue does not appear when I return to the house, it can actually happen anywhere. The colour can drain anywhere.

Yesterday, as part of Operation Build Up, I used my National Trust membership and went on a 20 mile trip to Isaac Newton’s family home, I even saw the genuine apple tree. It all looked very pretty. I say it looked very pretty, for I was completely incapable of taking anything else in. I blame my activities the previous day. The science museum there, full of all these fun little experiments, was lost on me. I just like the sound of the pool ball hitting some bells. Ding, ding, ding. It was good. The day before, I spent a good five hours, two and a half of those were outside, with Big Sister and her offspring. The offspring can be pretty tiring when you do not have cancer and are on day + 31 of a stem cell transplant. I was wide awake with them, until I wasn’t, sleeping on the sofa incapable of moving, but able to complain.

The post outing fatigue really is frustrating. It is more frustrating than the insomnia that comes if I have not done enough in the day. The first night I had insomnia, was the first night I knew I was improving. The improvement is just so slow. I had hoped that by now, I would be gearing up for a return to my nation’s capital, but I am not capable of looking after myself yet. I am 29 and I cannot look after myself. Catch.

Operation Build Up, has two distinct parts. I have mentioned before that one of the many benefits if myeloma is that one does not just have a deadly disease, they also have varying degrees of weak bones and pain to contend with. In case you did not get it, I do not think that this is actually a benefit of myeloma. Anybody who has spent a significant amount of time in a horizontal position, would, I imagine, experience some difficultly when trying to resume their normal duties. Stiff knees and jelly legs. I had/have that too. For me, my return to vertical living, adds a whole new challenge, separate to my fatigue and much, much much more painful. I have a back. I am telling you I have one, because apparently, it is a little attention seeker at the moment, and it wants everybody to know it is there. I can walk for less than five minutes before I feel it. I am attempting to carry on in spite of the pain, this is Operation Build Up after all, but it gets to the point where I cannot and I am forced to lie down, even if I do not want to.

I would say that the pain I am experiencing, is reminiscent of the pain of September 2012. I struggle to stand, getting out of a car is a treat, I need that stick more than I would like, and when it is really bad, I waddle. Last time, it took me two-three months to walk far distances without experiencing the pain and three times as long before I could carry more than one bag of shopping (I am not sure if I should be doing this anyway). I do not want to have to wait for two months. I do not want to have to sit down or lean every five minutes. How am I expected to cook? Hang on, I can’t do that anyway, for I do not have the energy. In some ways, the pain is more frustrating than the lack of energy, because I have already overcome it once. It feels like regression, and I do not like that. Combine the aches, with shortness of breath caused by the fatigue and I look like I am from Boston, Lincolnshire if I were to take the Daily Mail as gospel. At times like this, I start to get angry with the lovely locum GP again and the delay she caused to my diagnosis. Without the delay, maybe it would not be as bad and I could recover with more spend and agility. Maybe.

It is what it is though, and getting angry and overly upset is not going to improve it. It is a matter of practice, exercise, patience and pain. I have to let the pain in, in order to improve. I am going to have to be a bad ass. It’s doable. Plus, I can sit smugly in my bed, pleased that I requested an appointment with a physiotherapist having anticipated some difficulty in this area, and have the exercise technics on a piece of A4 paper. Listen up boys, I will be strengthening my pelvic floor. Woo. They key to this though, is doing them.

With that then, I am going to get out of bed, and do something for as long as I can, before I can’t.

Get to it.

EJB x

P.S. Just to give the full spectrum of my world, I am still suffering from nausea. It’s morning sickness really, for I predominantly get it as soon as I wake up and that generally causes a delay in me getting up. I attempted to stop taking the pill that prevents this, for that causes something to get worse in my bowel, but for the time being, I cannot. I need to pop that medium strength pill at least once a day. It’s okay though. I am not up the duff.

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And So It Starts…

… Twelve hours early. Hooray.

I have my good cylinder reserve. I have easy to heat food in the freezer. My bed is made. The flat is clean. EMan is ready. I have ITV mystery dramas. I have helpers at the ready. Just turn off Regina Specktor, it’s not for now.

Let the sleeping commence, as soon as today’s drugs have been administered. Embrace the mental blankness. It’s how the people feel after a session on the source. Or so I recall.

Be strong Jones. It’s making you better. Really.

The paraprotein better go down in 15 days. That’s all I am saying.

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