Monthly Archives: June 2014

Volume II: Déjà Vu

As much as it may have appeared to you that my last blog was intentionally brief and not proof read, thus expressing my raw emotion and anger at my current situation, I can confirm that that was not my plan. As much as I like dramatic emphasis, I also like a beginning, a middle and an end, more than that however, I enjoy something that resembles a point. Let this be a lesson to all you bloggers, do not put your mobile phone into the pocket of your jeans, when you cannot walk straight, mid blog post. Intentional or not, it proved to be one of my most popular blog posts to date. Alas, maybe all my blog posts should be as punchy; I just have too many words in my head.

The initial intention when I started to write ‘Volume II’, was to provide an informative overview of the new treatment plan with a rousing, motivational ending full of cliches, about how I was going to fight and not flight. The ending of course, would have you applauding me for my never ending resolve, whilst saying to anybody you encounter that I am an incredibly brave, independent, woman worthy of an OBE. I suppose I have cut to the chase a bit, but at 05:00hrs in the morning, let me see what I can do.

And so, it starts all over again.

Yesterday [we are now talking about last Thursday], the plan, if you can call it a plan for me, was laid out before my eyes. It is with great pride that I was able to make it through the appointment, where it was confirmed to me that my life would once again be fatigue fuelled, without crying. I may have swallowed more than usual, but I did not cry. I saved the crying for Mamma Jones over our laksa soups, by myself on the bus and pretty much any other place I went last week.

So, after 60+ Velcade injections over my 22 month myeloma lifespan, we are no more. After two relapses and a transplant, it has been decided that my stomach can be spared of further marking and my limbs can hopefully, be spared of the pin and the needle. It’s going to be all about the tablets. Unlike my recent Velcade injections, there is nothing about the new treatment that can be considered maintenance; it is a big fat, steroid supported course of treatment.

For those of you in the myeloma-know, my treatment will not be that surprising. It consists of a four week cycle, with three weeks on and one week off of Revlimid and a pulse of steroids. The first cycle has not one, but two pulses of steroids. I will remind you all, because it is a fact burnt onto my worst nightmares, I do not get on well with the ‘roids. At it’s most pleasurable, dexamethasone gave me a beard. I do not like having a beard. The two drugs are supported by a whole host of other drugs, but I will share those with you when I collect them tomorrow. As a preview, I think I am returning to the territory of 30+ pills a day. Chalky.

I start the treatment on Wednesday. Tomorrow, I get to have my seventh bone marrow biopsy. I am looking forward to the cake I get to have after that deed is done. Although I know the start date, I have no idea how long I will be on the treatment for. I know that I have been given permission by the Medically Trained People to go on my booked holiday on 1 October, so one can assume that I will still be in treatment then. It’s a big black indefinite hole.

The treatment I will be on does not come with the hope of a prolonged remission. Thus, there will need to be a decision made in my months to come about me having an allograft. Two months after my autograft last year, I made that particular decision about the donor transplant and that decision was a go. All or nothing. When I made that decision, I did not know that I would have to think about playing my trump card so soon. It is a terrifying prospect.

There are going to be many a side effect coming my way, not least the return of the fuller beard. I am not kidding myself, there will be fatigue, so much frigging fatigue that looking at me will have my guests yawning. As a result of the fatigue and the chemical imbalance in my body, I imagine that I am going to have the odd moment of feeling overwhelmingly sad. I am preparing for these inevitabilities. The latter side effect will not be helped by the fact the treatment is all home based. I need daily interaction and the lack of it, was the hardest thing I found with VDT/VTD and my post transplant recovery. Without interaction, which intravenous meds afford, though nowhere near as much as living does, I fear myeloma will take over.

Having been through all this before, my sense of déjà vu tells me that I need to have sufficient home based activities to prevent the madness. That is just one part of my sanity preserving strategy. I know that I need to get better at asking people for help, even if that help is just company. Flip that coin however, and I also need to be able to say ‘no’. The above three things are far easier than me being able to eradicate the current guilt I have over my relapse. My relapse has let people down; it’s let me down. I am yet to start my treatment, but in the last three days, I have had to forgo two important events because of My Relapse. I hate that my will is not currently strong enough to fight my myeloma. I have never considered myself unreliable, unless the topic is defrosting the freezer or clearing the end cupboard, before. I hate it. In fact, hate does not even begin to cover it.

It has been a week since my world once again imploded. There have been too many emotions to list them, and too many tears to count them. I turned a corner on Thursday, but it would be naive of me to think that my negative thoughts have been banished from my week, let alone forever. It’s a journey and there are going to be highs and there are going to be several lows. I may lose all my money, I will lose my hair and I am going to fight to not lose any more of myself. It’s going to be shit. Monumentally, shit.

I know I am not ready to give up yet. My relapse puts me between a rock and a hard place, and the only option for me at this moment in time is to fight. I will fight for myself and I will fight for everybody in my support network. I cannot give up yet, I am only thirty years old. I still want to see me at forty, even now there is absolutely no chance of children. It’s an uphill battle and I am not ready to lose it yet. I cannot lose it yet.

And so, Dexamethasone and Revlimid, bring it on.

Bring it on, again.

EJB x

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Volume 2

I And so, it starts all over again.

Yesterday, the plan, if you can call it a plan for me, was laid out before me. It is with great pride that I was able to make it through the appointment without crying.

I Give It A Year

Have you ever been to a wedding and attached an expiry date to the happy nuptials? If I had done this in my past, I would have almost always been wrong. Being wrong takes the guilt away from having the thoughts in the first place. Just over 11 months ago, I attached a multiple timescales to something that was not a wedding. The successful relationship between myeloma and my stem cell transplant, had me predicting the length of the union many times over. At my most positive, it would last so long that divorce was a fuzzy dot somewhere in my future. My worst nightmare was that it would not work, closely followed by it failing within a year of my transplant. My transplant was on 17 July 2013, and I have relapsed. There is no happy anniversary for me, just a fuzzy dot somewhere in my future where I may once again be as happy as I was a fortnight ago.

I am not ready for this yet. Last Thursday, when I was told that my paraprotein may have gone up, my overriding thought and one that I shared, was that I was not ready for it to come back yet. On Monday, when I received a phone call telling me that not only was my previous test correct in it’s finding of a measurable paraprotein, it had risen again to 20, I knew then that I still was not ready.

I feel like I put my life on hold. From August 2012 to November 2013, my life was on hold. I had a hold on my existence, to ensure that I did not burst. After November, when the wondrous ‘remission’ word was spoken , things did not return to my new normal overnight. It was hard, much harder than I thought or dreamed it to be. I had to teach myself how to exist in the real world all over again, with myeloma as my sidekick. I still had not perfected it, but from March, I would say that I finally started to enjoy trying to. I was in my infancy. I am not ready to let go of that yet. I have more to do and I have more to give. I cannot do these things when I am chowing down dexamethasone and having to treat shitting like an event again. One cannot seize the day when they are so heavily constipated that they vomit and soak their t-shirt in sweat that smells like oranges and onions.

I was two Velcade injections away from relative freedom, and even though I feared jinxing things, I was planning things. I was not just looking a month ahead. Hell, I have plans for October. October you gasp, positively crazy talk. Clearly. Closer than that, I had booked myself onto a weekly film course because I was able to retain more information than I have for a long time, I had more energy and most importantly, I thought it would be good for me to do something just for me. There are more things in between, but even if there was not a specific date in my diary, I looked forward to it, just because I could. Hell, I might have even had time to meet a gentleman fellow. I might have had time to grow somebody else’s egg in my belly. That all goes out the window now. Relapse means that at 30 years old, my life is on hold.

It’s just not long enough. I deserve more. I want more.

Of course, a relapse was an inevitability with myeloma and the treatment I had. I knew this, we all did. That does not take away my sadness at no longer being able to say to taxi drivers in an attempt to get a discount/free ride, ‘I have myeloma, a cancer, but I am currently in remission’. If they were lucky, or if I was talking to an acquaintance and delivering the Road Show, I might have added ‘I feel the best I could feel.’ It’s going to be a while before I can say that again. If I can say that again.

I had things to do. I have not even had time to write my blog about how I manage to hold down a full time job, how that makes me feel and the sacrifices I have had to make to do that. Nor have I blogged about how I was told off by the Medically Trained People for doing too much resulting in me reaching for the Oramorph. Apparently the increased and continuing pain was muscular, because My Myeloma was not active and thus there was not evidence to suggest something more sinister. That might not be the thinking now. The back and shoulder pain is funny, because the thinking was that I injured my shoulder because I forgot that I had myeloma and lifted a suitcase one too many times, when we all know that I should not lift anything. Maybe that is why this hurts so much, because I started to believe that I was more than my illness again. Well, for that sort of folly, myeloma has punched me in the face and stood on my nipple whilst wearing a stiletto heel.

I will find out tomorrow what my treatment is going to be. I’m pretty sure I have been here before. A friend yesterday said that given my previous experience with crappy myeloma, knowing what to expect is a benefit. She may be right of course, but right now I see fatigue, financial woes, steroid crashes, tin mouth, bruises, loneliness, frustration, constipation, insomnia and my bed. Lots and lots of time in my bed. I have previously crowed over escaping from my Bermuda Triangle; that was shortsighted.

The Support Network tell me that I am strong enough to do this again, even though I have not had enough time to replenish my good cylinder (yes that is making a comeback side by side with my paraprotein). I know that I will have to find the strength from somewhere, but finding the strength to exist and not live, when everybody else around you is living, is exhausting. It’s so, so exhausting. I do not want to lose myself in it. I do not know how to preserve me. I am not as strong as I was two years ago. Myeloma has already taken that away.

So then, here we are… Welcome to My Volume II. It’s going to be something, I just do not know what yet.

I suspect I am going to need more help this time around. And lipstick, lots and lots of lipstick.

💄💄💄

EJB x

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A Mini Break – In Pictures

Always one to embrace modern history and scenery, I was surprised by how few photographs I took when I was in Berlin. Do not misinterpret me, my eyes still exploded with glee at the sight of things not Flat, Hospital or Deeping, but the dot between eyes and iPhone were not always connected. This oversight had absolutely nothing to do with the fact that I wanted to look all cool and nonchalant for the locals, and thus the fear that a camera would ruin my sweaty vibes.

So, yes, I went to Berlin for three nights and three and a half days. All I am saying is thank goodness I took my fan. It was three and a half days of sweaty bottom, and it could not have been a good experience for my fellow travellers. There, in the rather large city of Berlin, I was able to experience a level of independence I had not experienced for a long, long time and that my friends, gave me warm and fuzzy feelings when I went to sleep eight hours earlier than everybody else. I am not sure whether I invited myself to Berlin, so I am most grateful to my friends for accommodating me and letting me have first dibs on the apartment’s lift.

Before I share my wondrous photographs of tourists hotspots with you, let me tell you something that I observed. It is very easy to go away for a mini break. I do not know what I was expecting, but I hopped onto a plane and the next thing I knew, I was in Berlin. When I left Berlin, I hopped onto a delayed Easyjet plane and before I could listen to a long album, I was back in the UK. I swear, things were not that simple in 2011. Mind you, in 2011, my insurance was ever so slightly less than it is now.

I am just going to throw another observation out there… I may have walked too far.

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To prove to you that I was in fact in Berlin and not stealing photos from Pinterest, and to prove that I was excessively sweaty, I have stolen this one from Facebook:

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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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