Tag Archives: health

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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A Christmas Message

Ho Ho Ho. Can I get an echo? Yes I can, Ho Ho Ho. Merry Christmas.

Today is Christmas Day. Today is my second Christmas Day with My Myeloma, and although I am still sitting in the dark, in my clammy, night sweat riddled pyjamas, with a sore throat, a blocked nose, maybe moderately depressed, having had a broken night’s sleep, I can say hands down, that I feel much better than I did 365 days ago. I will need to nap later, and the reason for that is a whole other blog, but I do not anticipate any steroid crashing today, one needs to be on steroids for that, and so, I know that this year will be better. I just reread my blogs from last year, and I know it will be better. That said, myeloma still has the ability to make Christmas feel important. It is important for everybody of course, but in my strange, abnormally large head, myeloma brings pressure at Christmas. Pressure and bad thoughts.

For me, like the birthday now, Christmas Day, is a countdown in reverse, always accompanied with the thought of ‘how many of these do I have left? It’s my second now, so if the stats are right, I get eight more, right?’ I try not to believe that of course. I do not think I have ever done anything really wrong to warrant the naughty list, and Santa Claus is not a cruel man. The stats are wrong. At least, that is what I tell myself to get through the day. Nobody wants Christmas to be a myeloma downer. Myeloma has taken away enough already. Christmas should be FUN. MEGA FUN. Myeloma does take away some of my pre-Christmas fun, because in the back of my head, in addition to feeling the presence of the grim reaper, I know that something could go wrong with my body, this ruining Christmas for everybody on this universe, so I have spent much of the last month begging my body to get me to the 25th December without any glitches. I managed to get today with antibiotics, but that is better than the alternatives my mind can create. It is also better than the alternatives that happen to people with myeloma all over this fair land. Christmas is for loved ones and hospital love is not quite the same as family love is it?

And so, because I have a lot to be thankful for on this Christmas + 2, what with being well and in remission and all, I am going to attempt to not think about myeloma again today. It has had its time in my head today. After all, what is the point of worrying about what is going to happen to tomorrow, today, especially when today is the day after the night before when Santa Claus came down the chimney. I am going the rest of the day thinking about my family, the immediate mostly, all the Telfer’s or whatever they are called now in the North, the Jones’s in the South, my friends all over the place, my presents and my gut. That sounds like a good day.

Christmas is about the good sort of sentimentality, not the bad sort.

Must dash now, I have children waiting. So, without further adieu, I wish you all a very merry and healthy Christmas.

Much love and all that jazz,
EJBx

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Turning The Corner

The Medically Trained People, last Friday, told me that I was about to turn the corner. I did not believe them, not really, and even when I did allow there to be a flicker of hope that I would cease to produce green lava from my bum and mouth, I could not envisage what my world looked like around that corner.

On Saturday, my bloods went up, but I still felt poorly. As I struggled to comprehend what my ‘worst’ was going to look like, I began to struggle with what my ‘better’ would mean. On Sunday, my bloods went up and then some, and I was told that based on an increase of my neutrophils from 0.02 to 0.2, the Medically Trained People thought I would be able to go home later in the week. Later in the week? But I am supposed to be in here for three to four weeks, not two.

And then strangely, I started to feel better.

On Sunday, I ate. I did not eat a lot, but I ate. I also had a blood transfusion, just thought I would slip that in because I had never had a blood transfusion before. Somebody else’s blood is in my body. Wowser. That’s Dad Science. On Monday, I was able to leave my room. Until I left my room, I had failed to realised that I had not left it for a week. That thought was quite overwhelming. Unfortunately for me on Monday, I also had to shave off my hair. I am bald once again, and this time, the patches of scalp are far more noticeable than they were before.

On Tuesday, I received my last bag of fluids, because the Medically Trained People had decided that I was now able to take my own fluids, without immediately disposing of them, for the diarrhoea and vomit stopped on Monday.

On Wednesday, I was told that I would be going home on Thursday, but probably Friday on Day+16. Not too shabby. Today, I had the magically sound of a plop instead of a shower when I visited the water closet.

All done and dusted right? Think again. We’re talking about My Myeloma here. Things are never that straightforward.

I know I am lucky to have gotten over the worst of this so quickly, and I am fortunate to be able to look forward to going home, but it all feels so strange. Beyond strange. If I have described my last 11 and a half months as twilight, I do not know what this is…. This week, I have no idea where Emma has gone, because in her place is somebody who does not know how they feel, what they want, and dare I say it, who they are. And don’t dare to try and answer those questions for me, because I am likely to shower you with expletives. I get the impression from people, that they think because the shitting is over, I should be fine, back to normal and so should my responsibilities be. A least, that is how some people have made me feel, and it almost feels like a set back. I can categorically say, with all certainty, that this is not the case. I am not back to normal. I am not healthy. I am not full of energy, the opposite is true in fact. I have not spent the last four days on my room plotting and planning my life on the outside, because I do not have the brain capacity to do that. I am fuzzy.

I have spent 16 days away from home, dressed in pyjamas, without any privacy, and all I want right now is an opportunity to be myself, in my own time. I want to wear my own clothes, I want to put my lipstick on and have a timetable of my own making, as much as I can, and not live in one created by a certain NHS trust. I want to get to midday, without having sen at least nine people, whilst I am in a state of undress. They prepare you for all the physical side effects, but they don’t really prepare you for this, not really. Well, I suppose I am fortunate, that as well as being in a place where they give me multiple bags of fluids, blood transfusions and so many drugs I hallucinated, I am also in a place that offers counselling, but that is after the fact. I am not ashamed to admit that I need counselling right now. I have been, correct, I am in the middle of a journey and I do not know what it means yet. We will not know about its success for at least three months. I am desperately trying to figure this all out, but I don’t have the energy for it. If a problem presents itself right now, I do not feel equipped to deal with it, and it would probably result in me crying on my bed or literally pulling my hair out.

Part of me feels like I need to give into it (which I do), the other part wants to go out and run down Tottenham Court Road with her tits flapping every which way, telling the world that I just had a transplant. In the last few weeks, but more so this week, my emotions have been all over the place. Happy, sad, lonely, suffocated, misunderstood, mad, angry, apathetic, hungry, unique. It goes on, and on, but one thing remains, there is one constant, no matter what my mood, I am always right. Always.

I have just had a transplant for goodness sake. I am allowed to be right.

The toilet issues, stomach cramps, oral thrush, sore throat and sleep were difficult, but this new world, is still difficult. Everybody in my Network needs to understand that and let this play out. I am going to scream and shout and let it all out, and I am told by the Medically Trained Professionals that this is perfectly normal. I guess, that while I have turned one corner, I probably have a few more to go before I feel like I can down a pint whilst baking a cake.

My immediate recovery may have been speedy, but there is still a way to go yet. Don’t go forgetting that. Disappointed? Try living my life.

EJB x

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Hand Washing

A myeloma sufferer nearing their transplant date has many things to worry about. I can say this with the greatest authority, for I am a myeloma sufferer nearing her transplant date.

My greatest worry at the moment is not the 2% mortality rate, the high probability of mouth ulcers and lava like shit or the weight loss. Oh no, my greatest worry is how the hell I am going to remember to wash my hands in my new immune system-less body.

I have been told that I need to wash my hands after I have been out in public or handled money, before I prepare food, before I eat food and apparently after I have gone to the potty. Okay, I knew the last one already, and almost always did it.

In my adult life, I have strongly believed that one should expose themselves to some germs. I thought it made me strong. Sure, I washed my hands after I disposed of my waste or handled raw chicken, but that was my limit. Anticipating a world where I have to wash my hands after I shake somebody else’s does not sound like a fun one.

I am a thumb sucker. I love the comfort I get from it, but it’s not going to taste very nice covered in antibacterial hand wash is it?

Am I going to have to start opening doors with my elbows? Should I wear a mask in public? How much does hand wash cost? Is there a cancer benefit for people who are medically required to wash their hands more? How dry will they get from all this washing? Will I need a bigger handbag to accommodate the hand wash and moisturiser I’ll have to cart about with me? And what if I wanted to taste somebody else’s lollipop? Will I have to buy my own?

I have never licked a door handle, but knowing that I can now never lick a door handle seems unfair. I feel like I have missed out.

It’s a can of dirty worms.

Fortunately, I am pragmatic. If I need to wash my hands like an obsessive, then I will. I have enrolled myself on an intensive hand washing course. Apparently, every time you wash your hands you have to wash between the fingers and the wrist with soap for at least 10 seconds. I will find out whether I passed in June.

Wish me luck. I’m reaching for a First.

EJB x

*PUBLIC SERVICE ANNOUNCEMENT*
Antibacterial hand wash is not a sufficient substitute for soap and water. Medically Trained People are advised to use it twice before washing. True story.

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The Cause

I often ask myself why I have ended up with myeloma. Of all the cancers, in all the world, why I would have to go and get one that has made my bones weak, has no cure and is just so stubborn. I recall whilst in hospital asking what causes myeloma, whether any of my lifestyle choices led me down this horrible path, and I was told probably not. It can just happen.

“Probably not”.

This morning I read an article about how a popular diet pill, which I took three years ago, may prevent anti-cancer drugs from working effectively and that these pills can cause kidney and other organ failure. Did I do this to myself? Is the reason my paraprotein level is going down so slowly, because I took a diet pill, which you can get from the GP? To be clear, I got mine from Boots.

According to the Cancer Reseach UK website, people who are overweight or obese have a higher chance of getting myeloma. That is me. Is this why I have myeloma? Taller women too, apparently have a higher chance of getting the disease. I am five foot and eight and half inches tall. Is this tall? Is this why I have myeloma?

My research (a Google search) did not evidence that alcohol and smoking can be a cause, but how do people really know? Are all my previous vices to blame for what is happening to me now? When I was a child, I used to like to drink vinegar, Sarsons Malt Vinegar to be precise. Is this why I have myeloma? I also used to like eating a bit of ceiling now and again. Is this why I have myeloma?

Knowing what caused My Myeloma, would make no difference to the current situation. I know that. I would just like to know whether it was my fault. Is it my fault that I am not at work today and just had to take five pills? Is it my fault that I now have to sleep in a stationary position? Is it my fault that the paraprotein is not going down fast enough? Is it my fault that I have not been to the BFI side July? I just want to know. Mind you, I would prefer the Medically Trained People to firstly get my paraprotein to zero and secondly, come up with a cure. That would be nice. The latter would not just be self serving, it would help others too. Do these thoughts buy me some good karma?

As for me, today, I am going to try and not spend the next 24 hours thinking about my end of cycle paraprotein result, which I am due to get tomorrow. Once again, I am in the situation where I do not know what I am doing on Monday until we know whether the paraprotein has fallen below 19. Regardless of the result, I will still require ‘salvage treatment’ in January. I would just like to know that my body is still responding so I get to have my last cycle of PADIMAC.

Think 18 or below.

I am now going to get out of bed. I have a party to go to tonight, thus I should probably shave my legs.

EJB x

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