Category Archives: Positivity

The Annual Challenge

Once upon a 2013, I explained on this very site that every year I stay up to watch the annual Academy Awards https://ejbones.wordpress.com/2013/02/25/oscar-night/. 2017 was going to be no different. Myeloma or no myeloma, I would be fulfilling my annual challenge, maintaining a 19 year tradition. I do not wish to keep you in suspense, thus I can confirm that 2017 was no different to the 18 years before it and I did fulfil my annual challenge. 

And the Oscar goes to me!

That said, with each passing year with myeloma, I am realise that it is getting more and more difficult to complete my challenge. Last year, I had been released from hospital three days prior to the ceremony after a nasty bout of Influenza B. This year, as my previous blog covered in too much detail, I was exhausted after an uncharacteristically busy February. My Myeloma is a massive hurdle in this challenge, that only my sheer determination can overcome. I hope the day never comes where my determination is not enough.

You might wonder who am I actually challenging each February and why does it even matter? I used to think I was just challenging myself as a film fan, I don’t even know how or why it started. I don’t think I even considered it a challenge then, I was probably just happy Mamma Jones allowed me to stay up on a school night. It has now become so much more than that. It’s a tradition and if there is one thing I love, it’s a personal tradition. Just ask Big Sister whenever she proposes a change to our family Christmas meals. 

Not only are the Oscars now a passport to my former life, I now use them to challenge myself to rise above the limitations of My Myeloma. I have not dared to imagine how I would feel were I unable to stay up all night and watch a ceremony that in the grand scheme of things means very little and where I find the a number of the films lacking in both personal enjoyment and originality (cough, Hacksaw Ridge). Thinking about it now, without any hint of exaggeration, I would be devastated. I would feel like I had lost something. I would mourn.

Since my relapse last year, I am usually in bed by 21:00hrs every night, asleep by 22:00hrs unless I am experiencing drug induced insomnia or just the bog standard insomnia. Last New Year’s Eve I stayed out until 04:00hrs, but prior to that, the last time I had voluntarily kept myself awake past midnight (bar a handful of social occasions if I am being 100 percent truthful) was for the 88th Academy Awards on the 28 February 2016. Physically, the act of staying up all night is a feat of major endurance. Add to that actually following and retaining what is being said until 05:20hrs and you have what is now my equivalent of a marathon, albeit on my mother’s sofa with all the snacks my stomach can handle.

Back in my youth, which I now patronisingly see as my pre myeloma years, it would take me a single day to recover from staying up all night. Since my first ceremony with myeloma, I think I could add a day’s recovery time to each year that has past. I know that physically, staying up all night is to my own detriment, but mentally, well mentally, it makes me feel like I can sing for a year.

I cannot pinpoint when I started to try and watch as many of the nominated films as possible prior to the ceremony, that has not been going on for 19 years, but it certainly predates myeloma. It seems to have grown Year on Year too, with me watching more of the nominated pictures and completing more of the categories. You cannot understand the satisfaction I glean from completing a category, even if that meant having to watch Hacksaw Ridge and pay for the um, privilege. 

I completed 21 categories by the way. There are 24.

This year, just as staying awake proved to be more difficult, so too did finding the time, energy and finances to watch the films. Some people might think I have an abundance of free time, but I wager they have not tried to watch a three hour subtitled film whilst under the influence of chemotherapy and morphine. In addition to loom knitting 23 hats, going on a mini break to Amsterdam, attending a wedding, catching the flu and having two additional weeks of treatment on top of my usual treatment, having the ability to sit down, focus and follow the plot of a movie was hard. There were many days where I was incapable of doing it, resulting in a film heavy four days last week. To put this into perspective, over the last two months (as with every month) there have been many days when I have struggled to get up and cook a ready meal or even get myself a glass of water. I think this warrants calling what I do for the first two months of each year a challenge. This year, I am fortunate enough that I chose wisely at my other annual film related Challenge at last year’s London Film Festival.

I used to jokingly refer to Oscar Season, and it deserves to be capitalised, as an annual challenge. It doesn’t feel like a joke now. It is My Annual Challenge. I may laugh or look embarrassed when I tell people about it in case they think I do not realise it is just a meaningless and unfair system where a bunch of rich people reward and celebrate other rich people. I know the ceremony itself is not world changing, groundbreaking or profound; I do not watch other award shows. For me however, and I cannot explain why it is, it is important. It’s important to me. I don’t need to pontificate over the politics of it, the worthiness of the recipients or get into social media spats about any or all of the above. I personally celebrate my ability to watch the films in the lead up and then the ceremony itself acts as the conclusion of months of effort. Trust me when I say, it is most certainly an effort, especially in a year when something Clint Eastwood has directed is nominated.

When the credits roll as the sun comes up, my Challenge is complete and I do not want to talk about it any further. In fact, I find analysing it and any press coverage after the fact irritating. This year, I made a slight concession because of the slight ‘mishap’ at the end, but generally, I’m done. The Challenge is over. This blog seems outdated, note how I am not mentioning any of the winners.

Watching the ceremony feels like something I have always done, and I believe, I will always do. I genuinely fear a day when I cannot do it. The difficulties I faced this year, does give me some cause for concern. So far, the closest I have come to not watching the ceremony was last year, and I was prepared to discharge myself from hospital in order to do it. Like most things that create excitement in my life, this year, I had to peter my pre show enthusiasm in case I did have an uncontrollable need to sleep or unexpected health issue. My previous bravado saying it is something I’ll always do is wishful thinking. The truth is, I just do not know if I will always be able to do it. 

For now, knowing I have completed My Annual Challenge, I feel a certain level of contentment that I do not want to lose. In the last week, I have congratulated myself on more than one occasion. Naturally, I did not do it alone and I owe a great deal of gratitude to the two fine gentlemen who helped me along the way. 

Until next year then, I wish you all well in the cinema. 

EJB x

P.S. I may have completed the challenge at my parents’ house, but I was forced to deviate from my other Annual Challenge tradition when I discovered that Marks and Spencer’s had discontinued my Hickory Steak Oscar Night Pizza. I was outraged. I’m still outraged. Sure, I purchased a different oven pizza, but it was not the same. Not the same at all. 

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The Good Fight

A wise person once said to me that it would take time to recover after my transplant, both physically and emotionally. The person who said this is far more pragmatic and sensible than I, and added that I may feel different after my stem cells had returned to my body. Clearly, this was a conversation that was had before my transplant. Clearly, she was correct. I do feel different and I am not talking about my back.

A transplant is a transplant is a transplant. Most of the physical side effects can be predicted and there is a desired outcome. The Medically Trained People expect certain things to happen, I know that because they told me roughly what was going to happen at various stages along the way. Repeatedly. In addition to that, I read literature from various charities and collected anecdotes from people whether I wanted them or not. The emotional toll of what was going to happen was rarely discussed.

I was excited about my transplant because it signalled a possible end, but now, in limbo land, I feel empty. I’ve been running so fast for a year, working towards something, and now, I have done everything I need to do, all I have is waiting. It is an ever so subtle difference, that at times, I feel only I get. I remember many months ago, somebody who had a transplant telling me about their post-transplant depression, and I did not understand why they would be depressed. Everybody’s cancer is their own and I understand it now.

I have spent seven weeks beating myself up about this. I am stoic. I have reached this point in my journey with my head mostly held high and my glass half full. I am supposed to be a motivator. I am supposed to smile and let everybody looking at me know I am okay. I should not feel like this. This, by the way, encompasses a lot and with this, I feel like I am stuck on repeat. So, do yourself a favour and stop reading now or grab a tissue. It is uncouth to blow your nose on your top; I am learning that daily.

In the first few days in hospital, when I was still excreting fluids from my bum hole on the hour, I felt like I had lost my ability to reason and to problem solve. Now, with the weeks gone by, I know I have. Simple things feel difficult and by simple, I mean simple. Deciding what to have for dinner is no walk in the park, it is a headache. So imagine how I feel when it came to organising getting a new bed and wardrobe (I haven’t done it) and deciding what day I was going to return to London. Do not even get me started on my financial issues. I feel like Podd.

I have also discovered that my lack of reason, almost always means that I cannot stop myself from blurting out my thoughts and feelings. I do not need to paint a picture of this, for I sound like a whining arse wipe (which makes me feel worse by the way), but I am going to ram it down your throats anyway… If I feel sad, upset or angry, I am going to let it out. All my sense tells me not to, but I cannot stop myself, especially if we are close. As Mamma Jones explained to me yesterday, not everybody is her or Big Sister, and are programmed to take it. Last Sunday, in the middle of my worst breakdown yet, I believe I said that my life might nothing, none of my friends cared about me and I wanted to die, which led Big Sister to tell me to ‘get a grip’. I thought that was mean. That is how I felt in that moment. My response was something along the lines of saying that people do not understand what is going on inside my head. If I were reading this about somebody else, I would tell me to get a grip too. It does not feel up to me. Let us not forget that I am also going through the menopause, albeit real or fake.

Don’t get me wrong, sometimes, I am still a hoot, but my wit seems to be fighting an uphill battle for attention.

My excitement pre transplant, evidently, has diminished, it is not completely gone, I am a fighter after all, but it has gone right down there with my bank balance. Others are excited about the future and I get pep talks about how things will improve. The truth is with the transplant is that sort of talk and expectation, that talk about the improvements to come, anger me now and make me feel frustrated. Especially when the pom-poms are coming from secondary experience. Personally, I can barely think, let alone talk about what is going to happen to me in October, November, December, or how much I want to get back to normal, or what getting back to normal means to me, without crying. I cannot finish those sentences. That is no exaggeration.

On a number of occasions since I came out of hospital, people have asked me those very questions (what happens next, what are you planning, do you know when you will return to work, blah, blah, spew) and told me what I have to look forward to and every time, unless it is me instigating it, I feel like somebody has stabbed me in the stomach and then stuck their thumb in the wound they created. The thumb makes me cry. My voice breaks, and I have to use all my might to suck the tears back up again. In the last year, I have become very good at this, sucking the tears back up again, but in my world post transplant, it is much, much harder to do. The tears just come or I sound like a man. On one particular occasion, I was on the phone to a senior work person, but fortunately, the senior work person was oblivious to what was going on on the other end of the phone. Sometimes, there are reasons to be thankful for the temperamental mobile phone coverage in the fens. It was my favourite instance, because I would never, ever allow somebody of their kind, to witness that type of weakness.

The future everybody talks about so eagerly, scares me. I do not want to upset them. On the few times I have felt strong enough to let that excitement in, I plan in my head. I plan meals, cinema, theatre and holidays and I come across other hurdles and disappointment. I am not clear if they are actual hurdles, but my lack of reason makes mountains out of molehills. It is a prison. When my post transplant world comes, when I am in it because right now is not the world I envisaged, I want trumpets, bunting and kept promises. Right now, I just want support, understanding and reassurance.

I know that my up current struggles are not helped by my isolation. Since I was discharged from hospital, prior to Sunday afternoon when I attended a two year old’s birthday party, I had conversations in person or on the phone with just twelve adults, about half of these were not myeloma related. It would be fair to say that whilst I was in hospital, much of my conversations we also myeloma related, nearly all of them in fact. My transplant seems to have defined me more than my other treatment to date. I am more than my transplant and My Myeloma, and I deserve to be spoken to as such, otherwise, I end up having the same conversation again and again, just with different people. In terms of contact, what I mean is text message. Rightly or wrongly, I feel let down.

Based on all this, in terms of the effect on me, all I can say is, do the maths. It’s Key Stage 3 sort of stuff. If you cannot do the maths, see the bite size example below:

Isolation + boredom = insecurity + paranoia = tears + sadness

☔☔☔☔☔☔☔☔☔☔☔

I am not embellishing anything or seeking your pity. I want understanding. The thoughts I mention really have gone around and around my head and I have been taking this trip for weeks. Not every day mind, I do get the occasional rest day. In the last three weeks I have made several attempts to write this blog. I have questioned what has happened to me, what is happening to me and my future. I have played out the various scenarios in my head. I have been up and I have been down. There is however, only one time I have been absolutely certain. Somebody, who was recently diagnosed with the wonder that is myeloma commented on my blog and said they did not think they would take the medication to treat not cure it. The comments saddened me, but they also made me realise something about me, that in spite of everything I have said above and all the other side effects, I would never not fight this. Even if I am have no money, my support network get sick of me, I cannot shift the weight and I remain bald forever, I would continue fighting. The realisation was a relief, because on the dark times, I thought I had lost sight of it.

This period, is just part of the battle after all?

Anyway, I can still laugh at farts and stuff so I am bound to be okay.

EJB x

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The Recovery Position

Take one hefty dose of fatigue, mixed that with an equal measure of impatience and what you end up with is a toxic amount of frustration.

I am very frustrated. I am the picture of horizontal frustration.

As with everything related to this procedure, the frustration grows from me not knowing how long this fatigue will take to get lost. I have not lowered my standards enough to say ‘do one’. I still have some brain cells working. At least I think I do. I know that the fatigue can last a long time. I also know that it might only last a few weeks. I know, that it is slightly different for everybody. What I do not know, and what nobody else knows either, is how long I am going to be bed bound for? How many more times am I going to wake up hungry, and then have to wait for three hours to build up the energy to serve myself a bowl of cereal? How many James Bond films am I going to start, but not finish? I am currently on five, by the way. One would say it is a blessing I have seen them all before. (Sean Connery in short shorts). When am I going to experience thirst again? More crucially, when am I going to find the energy to wash myself. It’s been four days now and my right armpit is pungent.* Seriously.

Home is much better than the hospital. I should get that point out there right now, in case anybody was mistaken and thought I wished to return to that sterile environment. I don’t. I think that when I returned home on Friday, I imagined, actually, hoped, would be more appropriate, that the fatigue, would mean me, being a little sleepy as I made my way between the rooms on the ground floor of the house, enjoying my various box sets, whilst people did things for me. Essentially, I fancied a summer holiday, of the type where I got to watch Independence Day on repeat and get obese. The reality, is far less exciting. The reality is that I cannot look after myself. Not only that, but the reality means that I cannot really focus on anything long enough to kill some time, and I am confined, predominantly, to my bed. The family do their best to get me up and about; on Saturday this led to me having a power nap in the back garden, on Sunday, I was forced to paint a boat. On Thursday, I am forcing myself to get dressed. I was going to do this before I found out I had to go and have a blood test.

Patience would go a long way right now. I have never had any. The nice ladies with the soothing voices in Macmillan say that I lack patience because I do not like losing control. I think they are correct.

If I was not me lying in this bed with the bedsheets I do not like, I would probably offer the pathetic, bald figure who looked something like me, some advice. I would say that I only had the Melphalan three weeks ago, and the transplant was 20 days ago, the Medically Trained People say this feeling is perfectly normal and let us not forget, I did get out of hospital earlier than expected. Everything is as it is expected to be and it’ll work itself out to a point where I can bake a cake. I would also add, because this part is important, to keep my head up; medicine may advance… I am wise of course, but logic isn’t really a friend of mine right now. Logic is not going to make me better nor is it going to make me feel better. Logic is not going to change the fact that My Myeloma means that I will inevitably feel this way again at some point in my future. Put that into your smiles and mindless banter and smoke it.

The good thing about my current situation is that, in spite of my impatience led frustration, I am actually doing what I have been told to do. I have let the fatigue in. It’s in my bed with me and that is where we live. I am allowing people to look after to me and I am not getting annoyed about it. I sleep when I need to sleep, which in the words of Vivian Ward, is pretty often. That doesn’t really work because she was talking about being trapped in a tower by a wicked queen. Mamma Jones is not wicked. Myeloma is.

I believe time will heal this current wound. I just wish I knew whether it was all going to be worth it. I think I know what the answer will be, but I have to be moving around again to feel it.

EJB x

* The shower comes this evening, thank goodness. Fortunately, I have lost a lot of body hair. I have to wait for there to be other bodies in the house and I do not think the dogs count.

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Dashed Hopes

Since the 17 August, I have been counting down the imaginary days to my next volume, chapter, to a time when I can resume my normal, or realistically start my new normal. Along the way there have been setbacks, points in which I could see no end to the twilight I am stuck in. Each time, I have been able to pick myself up and continue with my treatment. I have got this far by setting myself targets and goals; things that I can enjoy after PADIMAC and then after my transplant.

In the last month, my mental planning has been working overtime. In the middle of May I have tickets to see The Book of Mormon, in June I am going to be a bridesmaid, I want to walk up to the top of Monument, I am going to go on holiday to Cornwall and I am going to go back to work full time. All these things I have been holding onto so tightly, they have been my reason to get out of bed everyday and with my transplant looming they were within my grasp. I could almost touch it and the happiness this created was indescribable. They were mine for the taking when the myeloma was asleep.

Unfortunately, nobody told My Myeloma this…

Today, I discovered that I will not be having my transplant on the 27 March. I do not know when I am going to have my transplant or indeed if I am going to have a transplant. I have been so focused on resuming my life that I had forgotten about my paraprotein. I have not felt this well since before my diagnosis and that also made me forget about my paraprotein level. I do not think that after today, I will be forgetting about my paraprotein level anytime soon. In January it had plateaued, but last week, it apparently had a windfall and jumped back up to 26. This means no transplant. This means there is no end in sight. This means I am back to where I was in October. I thought I had been progressing, but in reality I have just been treading water.

I do not know what to do. It feels like my diagnosis all over again. I am to start a whole new course of treatment, but that cannot start until at least next week because my neutrophil count is low and I have a suspected infection. My new treatment is going to last at least four months and then… Who knows? There is no end. It just goes on and on and on. I am constantly trying to come to terms with My Myeloma but every time I reconcile myself to my reality, it comes along and fucks things up some more. It’s never going to end.

I don’t deserve this. My loved ones don’t deserve this. I have been poked and prodded and had endless amounts of blood removed from my body. Hell, today, they took out a bit of my bone. I have taken drugs that have made me ill and made me lose my hair. I have done everything that I was supposed to have done and still it is not working.

There really are no words.

I have no idea how I am going to get out of bed tomorrow… but the thing is, I know I will and for the time being, that is all I can do. Get out of bed and don’t give in. I am not ready to give in. I can’t.

EJB x

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Doubt

On Thursday, I met with the transplant team, well, a transplant doctor, and I was introduced to the wonderful world of transplant options.

I have made my decision now about what transplant I will have, but it was useful to go through the options once more, so I have a rough idea of my future options. The one thing that became patently clear during this consult is that I will always be plagued by doubt. I will be plagued by doubt that I have made the wrong decision about my treatment. There are no guarantees in myeloma treatment and the truth is, nobody knows what the right answer is, until after. After I am gone, or if I am lucky, if I made the right decision and all is going well in twenty years time.

First things first, I was a fan of the doctor. He introduced himself to me by his first name and this does not happen often. In fact, it has not happened since my diagnosis.

In terms of transplants, there are three available to me, well, three and a half. The half is dependent on my results after the auto. Each option, is about time, my time left, and odds, and nobody knowing what is the best one for me. I suppose I am fortunate to have these options, because many people don’t. People do not have a sibling donor match and for those people, the auto and drugs is the only option. I have to see that my sister’s gift is a benefit to me, I just wish sometimes that it was not me making the decisions. There are too many variables.

Now, it was useful for the doctor to speak to me like I was not medically trained. I was provided with a helpful set of charts, which shows the risk of the procedures against the chances of the myeloma returning. Visuals are always of some assistance.

Auto
The first option and the most traditional, is the Auto. My stem cells. This has been around for longer and the stats, it’s always about the stats, say that there is a 2% mortality rate during the procedure. The procedure comes with a guarantee that the myeloma will come back, but nobody knows how long it will be before it does. Maybe a year, maybe three, maybe longer. Nobody knows. This is what I am having.

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Allo
This involves donor stem cells entering my body. The procedure comes with a 30-40% mortality rate, but a 40% (according to this chart, although I have heard 10-15%) chance of a cure. The big C. The Cure. I have spent a considerable amount of hours considering this, and the truth is, I am not ready for the risk. I want to live now. A one in three chance of dying, that may or may not come with a cure is not a viable option for me right now. I could put my body through all of that for nothing and then run out of options. I am not there yet. I am not ready to die and the chance of a cure is too small for me to run that risk. You may think that this decision makes me a wuss, maybe it does, but I am not betting with my life. Not yet.

Here’s the problem then, if I decide to have one later down the line, the mortality rate rises to 60%. I am not there yet.

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Reduced intensity
Now, this one is complicated. My understanding is that it is a reduced version of the Allo, which comes with a little bit of my own. This procedure has a 15% mortality rate. The Medically Trained People disagree with each other over its effectiveness because this, in the terms of myeloma is relatively new. Not new, but the stats cannot tell you if it can be a cure, because there has not been enough time to prove it. They do not routinely do this at UCLH. But, they do have a trial to see whether doing this reduced intensity directly after an Auto (three months after), has long term benefits. I would be willing to give this a go, but my body would have to behave during my auto to be considered. We know my body rarely behaves.

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💀💀💀💀💀💀💀

Another problem I have, in addition to the risk of death and not knowing whether the decision I am making now is correct, is that my sister is not an ever ending resource to me. If at any time I have hers and I experience something called graft versus host disease and It comes back, then I cannot use her stem cells again (well, theoretically I could, but it would not be useful). Though, confusingly, a little bit of this disease is a good thing; it fights the myeloma. A lot of it is bad, it means long term illness or, you know, death.

💀💀💀💀💀💀💀

I know I am not a statistic, I am a person for the doctor told me so, but I do need to listen to the stats. At the start of all this, I was up for the Allo because it comes with the possibility of the Big C. Now, I have had the time to think about it and what the procedure means and where I am with My Myeloma, and what I want is time. I want time to live. Hypothetically, the Allo could give me more time, but it could also take it all away much, much sooner.

With all things myeloma, I think that time will help. Whilst the Medically Trained People may know what drugs are coming in five years time and the Big C is not in that bundle, there may be something in there to prolong the inevitable. Or in ten years. Nobody knows the answer.

For now, I am going down the safer route and I have to live knowing that my decision may be the wrong one.

Now then, what’s for tea?

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Snow ⛄❄

Once upon a time, I used to love the snow. I do not love it anymore.

The current nationwide obsession with the weather is clearly an overreaction. It may be below zero, but this is not an Apocalypse. For me, and this may also be an overreaction, the snow represents incarceration. I am a prisoner to the snow and this is partly due to me being sensible and partly because I am scared of it.

My mood up until Friday was pleasant. I was not thinking about My Myeloma, or my treatment, I was just getting on with things, and when the snow started, it put a dampener on all of that. I have not left my flat since Friday, and to be honest, I have barely left my bed. I knew the snow was coming, every media outlet told me so, and I prepared for it. I panic bought and my flat is full of activities to keep me occupied. I have not done anything. I do not have the inclination to do anything and that is the snow induced depression talking. I have had days where I have stayed in the flat for longer than this, but that is not when I have felt this well. I feel reasonably healthy right now, and that is making this prison so much worse. My addiction to social networking is also making it worse. I see images of people having fun in the snow. In my pre-myeloma days I would have been one of those people. I would be making snow angels or taking a walk with my wellies on listening to the powder break beneath my feet with my imaginary boyfriend or A Twin, but I cannot do that now. I cannot pop into the pub after a winter walk to warm up, because I cannot go for a walk. I promised people I wouldn’t.

My experience of the snow amounts to this:

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On Friday, my wonderful break was interrupted by having to go to the hospital, which obviously reminded me of the fact that I have cancer. By the time I was at the hospital, I did not need to be reminded, the fear I had leaving my front door and getting into the ambulance was enough. A normal person could slip on the ice and break a bone. I do not know what damage I could cause to myself and this is constantly in the back of my mind and the reason I am still in my house. Such was my concern about the outdoors that I considered not going to a dinner in the evening because I did not want to chance a fall. Instead, with agreement with my friends, we settled on me walking slowly, accompanied. I had to be accompanied like a child. The whole affair made me feel like a pathetic little child, who is afraid of the snow. It was then that I decided I would keep my promise and not go out again.

If the snow was not enough to send my mood south, I had the hospital appointments with the inevitable waiting and anxiety, and the dinner. Not through anything my friends did, but more because I felt like I could not offer anything to the conversations. Try as I might, My Myeloma has changed me. Anything new from me is related to My Myeloma and this is not what people want to hear on a Friday night. It is important to me, and the things that can impact upon it. When one of my friends told me in jest that me talking about the weather was boring, I do not think she understood just how much this weather is creating a storm in my life and thus, how much it means to me. I talk and I think about it, because it stops me from doing things that I used to take for granted. I long for the day when the matter of boys and going out are at the forefront of my mind, but on Friday, it was clear to me that they are not and I do not know when they will be again. I cannot expect others to feel the gravity of my situation like I do. Others cannot understand how a comment or conversation would upset me, when I hardly know it myself, plus my sensitivities change daily. I am an emotional roller coaster. I am my own Nemesis. Since my diagnosis, the hardest thing to get my head round is realising that everybody else’s life goes on, even though mine does not.

I have spent most of the last 48 hours thinking about how boring I am and the paranoia has been in free flow. I cannot help but think that I am dull. At least the tears were hidden on Friday. If I cannot have fun with my friends, who can I have fun with?

I am frustrated because my imprisonment may appear like an over the top reaction, much like this spiral I have found myself on, but the stakes of me leaving the comfort of my flat are high.

It is what it is however and I have to deal with it, I just wish that I could do so without feeling sorry for myself. It’ll get better, starting around…. Now.

I blame the snow. It’s all the snows fault.

Bring on the rain please. ☔☔☔☀☔☔☔

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Game Face

Every three weeks, for my Doctor’s appointment, I have to pull this little baby out the bag… My Game Face.

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It oozes positivity and confidence, sure.

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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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Sunday Night Blues

For the first time in a long time, I feel like I have had a weekend. I do not want my weekend to end, by weekend, what I really mean, is I do not want the last 10 treatment free days to end. For the first time in a long time, I do not want to go to work tomorrow. I do not want Sunday night to end, because tomorrow morning, my current work means chemotherapy, Velcade and illness.

Battling My Myeloma is now my job and it is tiresome.

Tomorrow is Day 1 of my fourth cycle. I feel differently about this cycle, because I am apprehensive about the success of my treatment, and I fear the side effects I am going to experience over the next fortnight are going to be a complete waste of time. Clearly, these thoughts are negative and thus they are naughty and should be banished to Timbuktu. The illness I can manage if I know it is a means to an end. I just don’t know if it is.

Tomorrow, I finally get my paraprotein result from the last cycle and if there is not a reduction, I am not entirely sure how I am going to find the strength to get through the next two weeks. I know I will find the strength from somewhere, I always do. I just really, really want the paraprotein to have gone down. I want to be making progress in my treatment, so I know I am just that little bit closer to this phase of my life being over. If it has not gone down, I know there are more treatments and I will keep trying them until the Medically Trained People find one that works. I will accept no other option. Right now though, it would just be nicer and easier for me if there was a reduction. Good news will be the best medicine. Better than Valium.

👍😄 Positive Thoughts, please 😄👍

If only I was going in to my actual work tomorrow.

EJB x

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The Joker

I have been walking under a cloud the last few weeks, which only got greyer towards the back end of last week. Surprise! Just in case you were not aware…

I thank those of you for your kind messages and putting up with such open displays of self pity (on Friday particular thanks should have gone to the kind person who ensured there was some nice meat in my fridge; I am pretty sure I would not have eaten otherwise). There are several other people who should be equally thanked (probably those who have had to listen to me talk about my demise for example), but I just wanted to talk about meat. I am consciously trying to build up my red blood count after all.

I always thought that the Steroid Rage would come in the guise of intense anger, but it would appear, that for the moment and with me, it is finding its release via the path of self pity. Pity me please, I have cancer. Actually, don’t. Many other people have cancer too and even more people have awful things happen to them. I am sure that some of these people would have managed the last few weeks with more poise than I have and I find this somewhat embarrassing and unlike me. It’s not me. It’s the steroids. At least, I think it is the steroids. It is so frustrating that I do not know the cause of my emotions. Have I felt what I have felt because I am upset and frustrated by the ‘set back’ or does my ‘set back’ seem worse because my hormones are being poked by some over zealous drug? I don’t know the answer and I don’t think that anybody could give you an actual answer to my question. I need to learn that a lot of my questions, such as the one above, cannot be answered. I need to accept that this is acceptable.

Acceptance. I need to accept that it is what it is. This dawned on me this evening whilst Mamma Jones was driving me back to London from hibernation ready for tomorrow’s treatment. It is early days, well, we are four hours into the acceptance, and it may still be the steroids talking, but I need to accept that I cannot control everything. In truth, I do not have any control over the medicine, which is the thing that actually matters right now.

I do have the control over how I manage my current reality.

If I am sick from my treatment and cannot get out of bed, then that is the way it is. It is an awful situation to be in and I will continue to moan and groan about it, but I will have to manage it. If I stop responding to my trial, then that is an even worse situation to be in, but it is not a show stopper. I am not doomed and I should not act like I am. The end goal is getting better, whether that is getting better with PADIMAC or another form of treatment, my end goal is getting better. I have to accept that the ‘set back’, as Mr Pragmatic says, is just a hurdle. Obviously, I want to get better sooner rather than later, but getting better is the goal. Full stop.

I have had an epiphany, can you tell? I do not want to be defeated. I am not defeated. Good days and bad days remember? The bad days are still going to come in thick and fast, I am sure, and I am going to produce tears as a result and talk about how shit life is at times. I accept this. There will be good days too. I haven’t had a good one for a while, so if someone could throw me a bone, I would be much obliged. If not, I’ll wait. Life wouldn’t be so cruel as to make me wait for too long right? If I do have to wait, I’ll just blame the steroids again for my actions… You have been warned.

Oh, and the root of my epiphany? Much like My Myeloma in general, my epiphany is both ridiculous and random. Try as I might, I cannot connect the important message in the song to my situation, nor can I understand why this made me feel better or think all of the above, but it did. So, without further ado, it would appear that I had my epiphany whilst listening to Steve Miller’s ‘The Joker’.

http://www.youtube.com/watch?v=PmVusVh4TRQ&sns=em

Yet another true story.

Now, let us all hope for a good day or ten. Pretty please.

EJB x

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