Monthly Archives: December 2012

2012

2012 started off like any other year. I made resolutions and I broke said resolutions. Everything else up to the 17 August is a blur. I can’t remember very much of it as you will see, but then at the time, I did not know that I needed to remember it. I was just having fun and living my life. A meagre and meaningless existence for some, but all so very special to me.

In that first eight months, I know I would have gone to the cinema (once a week). I definitely went to the pub a few times and socialised with my friends. I also went to work every weekday. I did not go on holiday and I did not invent something spectacular. I just did what I did.

January was a typical January. It started with a horrific hangover and me waking up at 17:30hrs on 1 January after what can only be described as a three day bender. It was not nice. I made three resolutions, two of which were to drink less and lose some weight. Both lasted less than a fortnight, but little did I know that August would make these things happen rather than actual willpower. Thanks Myeloma. Socially, the month was taken up by my annual quest to watch as many Oscar nominated films as possible, a quest which went on into February. At the end of the month, I received an email, which stated that I made up characters to make my life seem more interesting then it actually is. I definitely dwelled on those words for longer than I should have done, but as it turns out, Myeloma has now become that character.

I do not remember what happened in February. Though I know the Oscars went ahead as scheduled and that I watched all the films nominated in the major categories as well as the ceremony itself, live for the thirteenth year in a row. I fear treatment will dictate that I will not make it a fourteenth in 2013. Sad face. Oh, this just came to me, my five year old niece came to London for the weekend and I took her on my ideal date. We fed some ducks.

In March my Gran died. I found out in my office and sat at my desk for two hours without telling anybody.

April is the fourth month of the year.

My birthday is in May, so my memory of this month is slightly better, despite spending three days (bar the hours working on the Friday) intoxicated. Housemate moved in, I baked, somebody told me they were in love with me then forgot about it and Mamma Jones and I went on a mini-break to Edinburgh. I believe this was the last time I saw the sea.

June was fun, that much I remember. I went to Field Day and Lovebox, which being in Victoria Park was delightful given the proximity to my bed, I started going to Zumba where my hips were unleashed for all to see and I enjoyed cheap beer in Wellington Barracks’ mess. June really was fun.

July proved to be a good time to be in London, despite the slow deterioration of my body. Everything was leading up to the Olympics, I saw the torch twice, went back to the Barracks, and I became obsessed with taking photographs of tourists. The start of August also rolled into this, for I spent a week of my sick leave lying on my sofa watching other people do sport. It was grand.

On 17 August everything changed and that change is well documented.

My year did not pan out how I had intended.

I did not go on the two holidays I had planned nor did I go to see my friends at the Edinburgh Fringe. I could not go to Bestival and I did not go to see any films at the London Film Festival. I have missed a number of my friends’ birthday celebrations and I stopped going to the pub. I lost two stones and gained facial hair. I no longer get the 38 bus to Piccadilly every working day and I do not cross the Blue Bridge in St James’ Park whilst walking to the sound of the beat. The mug in my locker on the 7s has long been neglected and I have not been on the 07:35hrs train from Kings Cross to Wakefield since July. In short, in September, October, November and December, everything has changed and I remember it all.

I remember my family and I remember my friends and I remember my positivity. In 2012 I have overused the term ‘Support Network’, I put my hands up and acknowledge that, but there is nothing I can do about that. Everybody in my beloved Support Network gives me the strength to not give up, even when the situation looks hopeless and the tears are in free flow.

It would be a fair assessment to say that this year has been a big pile of stinking shit covered in flies. Sure, it was memorable and life changing, but I would rather have been able to carry on with my meagre and meaningless existence.

So, bye bye 2012. You fucked everything up.

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Myeloma Dreamin’

I spend a lot of my time sleeping. Surprise!

Often, it is not a proper sleep. Poor REM. The sleep is a half sleep induced by drugs and illness, thus my dreaming is frequent and bizarre. In case you were ever tempted, I do not recommend watching a David Attenborough documentary on amphibians before such a snooze… red frogs everywhere.

Obviously, my favourite dreams, at the time at least, are the ones when I dream that I do not have myeloma. I go on roller coasters, break dance and stand for long periods of time. It is bliss. Such dreams are usually greeted by intense disappointment upon waking, when I am faced with my reality of struggling to sit upright.

Over Christmas, I have had some delightful dreams. The magical, mystery world of my mind is a wonderful place. I’ve been all around the universe, whilst remaining in my bed the whole time. Isn’t living great?

Last night’s was my absolute favourite of them all…

Imagine the plot of the 1993 classic ‘Jurassic Park’, but replace genetically modified dinosaurs with myeloma. I know it does not make sense, it is a dream. So, I am on an island near Costa Rica surrounded by people I know. The island is kitted out just like Isla Nublar is in the movie. My colour scheme was red, yellow, black and browns. Kept in large pens on the island are beasts collectively known as ‘Myelomas’ out to kill anybody and anything they come into contact with. There is also uranium. I think the latter was introduced because I watched ‘Notorious’ the other day. I am the gamekeeper, and I am sympathetic towards the Myelomas, but like the others, I want them to be dead too and we hatch a plan to use the uranium against them. My friend GB was taking on the Myelomas with gusto; he was a fan of the movie so he was using that knowledge to protect us. It is a but hazy now, but I purposely set a trap for a friend to be attacked by the Myelomas after I caught him using baby talk on the phone to his girlfriend. My subconscious must not like baby talk. Housemate was responsible for playing the ‘Jurassic Park’ theme tune from his bedroom throughout.

In my dream, I had already been attacked by the Myelomas, so jumping and running away from them was difficult, but I was keen to survive so I wore camouflage and covered myself in Myeloma dung. Pragmatic. The last thing I recall from my dream, was being trapped in a cave like jungle with my friends… In a way, I wish the last part of my dream was GB and me frantically eating jelly, as it wobbles away to the footsteps of the Myelomas. I love jelly.

So, that was my dream. Have fun analysing that, but in the meantime, below is a picture of me in ‘Jurassic Park’.

I am being brave, hence the smile.

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Parklive

One of my Christmas presents from my parents was the CD ‘Parklive’, which Wikipedia says is ‘the third live album by British alternative rock band Blur, released on 13 August 2012. The live album recorded the band’s performance at Hyde Park, London on 12 August 2012, as part of the companion concert to the 2012 Summer Olympic closing ceremony’.

I happened to have been at that concert, and it has since proven to be Β£65 well spent. I have mentioned that I went to the concert before, for it is now something of a milestone. It was the last time I went out out before I was diagnosed with myeloma. It was the last time I was cancer free.

Clearly, I know I had cancer on that date. I also had a fractured vertebrae. I just did not know it.

I do not think my reaction when I opened the CD was what Mamma Jones intended. She gave me the CD because she knew I enjoyed myself and I enjoyed the concert, and she was right, I did. My reaction even surprised me, I cried.

I believe my counsellor would call this grief.

The 12 August was the last day I had actual, carefree fun. I was in a considerable amount of pain, but on that day, I pushed it out of my mind and enjoyed myself. Let’s face it, I also got ridiculously drunk and that probably used my last reserve of good health before I spent the week that followed on a drip, getting cancer.

On that Sunday, it was hot and sunny. A rarity for the UK this year. It was so hot in fact, chocolate bars were melting in a corner shop I entered to buy rizlas. Middlesborough and Katherine were late arriving, because I got to stand outside the entrance for quite a while looking at the crowds. They at least did bring me beer, and we sat outside the entrance making sure Katherine ate her sushi whilst drinking, before we got into the hour long queue to get in. If memory serves, I was not impressed by the search procedure on entrance. I appreciate a good rubdown search and I did not get one. As we entered, New Order had just started their set and I was pleased I had not missed ‘Temptation’ and relieved I could finally go to the toilet. From then on we drank, we queued for more beer, were merry and enjoyed the music. Writing this, I just remembered that I also kissed a boy. I had forgotten about that. I must have been drunk. Prior to this, I peed in the park, in the open. I am not ashamed, only impressed now, that I was able to do so with a fracture in my spine. See, like I said, drunk.

The next day I woke up and my pain was ridiculous; I couldn’t physically get out of bed. I also felt incredibly ill. The day after that I was admitted to UCH, and three days after that, I had myeloma.

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Blur were amazing and I think I found it all a bit emotional on the actual day, especially the closing songs. I don’t think ‘The Universal’ will ever be quite the same for me. At the time, crying and me were not friends, but I cried on my way home. I was in pain and I did not know why… We all know why now. That day, the 12 August 2012, in Hyde Park, London, represents so much of what is now lost, that is why I cried when I saw the CD.

I wouldn’t take the day back mind; I think it was best to go out with a bang.

For now, I’ll listen to the CD and I’ll remember how I had it good for a while and aspire to get right back up there, as soon as my body starts behaving.

EJB x

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Overindulgence?

The Jones Clan has their Christmas dinner on Boxing Day. We always have and I believe we always will, except this year, we did not have a traditional Christmas dinner. It was agreed last year, after much protest from one particular family member, that we would not have a roast dinner again for our family meal. I was outraged. As it turned out, you can be just as greedy with a three course meal that does not include a roasted bird and pork loin, than you can with one that includes said roasts. In fact, you can be really greedy.

Fast forward to seven hours later however, and yours truly was poorly. Very poorly. For four months, it has been a daily struggle for me to, well, you know. It was not a struggle for me on Wednesday night. I was reunited with something with the greatest of ease. I also had to request a pail. I should have realised something was not quite right throughout the day, when I was, well, you know, all day long. I was you knowing, all over the place and loudly. It was a point of discussion. Sure it is uncouth, but I have cancer. Plus I was with my family, I do not have a boyfriend and I am very much a believer in flatulence being funny (in the right circumstance). It was not funny after 45 minutes in a little room, which was proceeded by me having to go to bed at 20:00hrs feeling sorry for myself.

In all my years previous to this one, I would have blamed the pain, dizziness, sweating and you know, on pure gluttony. It may still have been the reason I was ill, but I have another little friend you can blame things on now. I hate that. My Myeloma makes every change to my body sinister. Would I have been as ill if I did not have myeloma? We will never know… and as with all things that relate to my body, I hate that.

If you are sitting around thinking that you overindulged this Christmas and need to exercise, on Boxing Day, I ate the following; a bowl of Rice Crispies with Gold Top milk, three roast potatoes, a slice of ham, three slices of leftover roast pork, half a block of large Brie (I know I shouldn’t really eat Brie), a bowl of pea and ham soup with a Big Sister twirl of cream, bread, a few spoonfuls of chutney, three portions of beef stroganoff with fillet and rice, a mouthful of Stilton (I know I shouldn’t really be eating Stilton either), three brandy snaps filled with extra thick double cream, three glasses of Prosecco and a bottle of beer. I *might* have also squeezed in three clementines at some point, it is a little hazy.

Impressed or repulsed? If it is the former, did I mention I was single?

Oh, and in case this blog is too subtle for you, I believe my five year old niece explains it well in the text message below… She is her mother’s daughter.

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A Christmas Reality

Today is done. Today, is Christmas Day of course, or the 25 December 2012. As I expected, despite trying, today has been bittersweet. My body played ball for approximately four hours this morning, before I crashed and burned, cried, opened my presents and cried again, snoozed, watched a film and ate.

Tears today were inevitable, but how poorly I felt at approximately 14:00hrs today was not. So, being the brave lass I am, I cried. I cried because I wanted to feel better so I could open my presents with energy. Alas, I did not have energy. Stupid Myeloma. If I am perfectly honest, I cried because I have myeloma. There was no escaping it today. Stupid Myeloma.

πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…

Why couldn’t Santa Claus make it go away?

πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…πŸ’©πŸŽ…πŸŽ…πŸŽ…

At least I was spoilt and got lots of other presents. It is clear from my gifts that at the tender age of 28, I am over the hill. Today, I got a slow cooker, a cook book, smellies, knives and a period drama. I loved them all. Next stop? A sewing machine. For sure.

I would also list how much I have eaten today, but I am not Bridget Jones. Not yet.

Night night,

EJB x

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A Christmas Message

It’s Christmas Day. I made it to Christmas Day. I am awake and ready to spend the day with my family. In. Your. Face. Myeloma. You could not take it away from me.

I had considered doing a video message for you all, but seeing as it is Christmas and you are all likely to get lots of gifts already today, I thought the gift of seeing the laughter behind my eyes too much. One can have too much of a good thing. I will save that treat for a rainy day in January when today is but a memory, and the fact I have a lifelong cancer won’t matter so much.

The last five days have been tough. Real tough. Tougher than my previous cycles and the fault for that belongs to Christmas. I have and will continue to try my hardest to pretend that this is just a normal Christmas, but it’s not. Everybody knows it is not. I have cancer. My Myeloma is not the elephant in the room, because I am confronting it at every moment of the day. As I lay in bed, hoping for my Christmas wish to come true, every time I closed my eyes or it was silent, the words ‘cancer, myeloma and death’ would appear in my head. That really is not the spirit of Christmas, at least not the one Hollywood has taught me. I know though that there are only so many tears I want to spend thinking about it, because it is indeed Christmas and I do want to enjoy myself and spread the Christmas cheer. Take today’s outfit for example, I look like a postmodern Christmas tree and that my friends is on purpose.

I want to tell you all the things I have learnt this year; and advise those not as blessed as me, how to live their lives better, much like the Queen will at 15:00hrs today. Unfortunately, I do not think that Santa brought me enough words for that and this blog is time bound. Thus, because it is Christmas Day, I will warm your heartstrings and in the words of Ebenezer Scrooge, say “it’s true wherever you find love it feels like Christmas, it feels like Christmas, it feels like Christmas, it feels like Christmas” goddammit.

Now, us Jones and James Cottam Flooring are going to try and have a good time. We have two Christmas trees… which says it all. We are the bomb.

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Merry Christmas to one and all, and to my friends and family, I love you long time.

EJB x

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The Good Cylinder

Remember the Good Cylinder…

Remember the Good Cylinder…

Remember the Good Cylinder…

Remember the Good Cylinder…

For this will just not do…

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I would not wish this upon a mouldy cabbage, or something as equally heinous. Sprouts.

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The Starfish

It is that dreaded time again, when I cannot do very much. I made myself a cup of tea eight hours ago, but did not have the energy to drink it. I fell asleep with a dog on my head instead. That probably says it all.

I knew this was coming and I very much looking forward to waking up from it in three days time, just in time for Santa Claus. I have now been through this four times, and it may sound strange, but I am somewhat relieved to think that the next time I do go through this, I’ll be in hospital. Albeit with things leaking from each orifice as well, but I’ll be surrounded by more drugs. The fatigue is indescribable. I have tried, but I strongly suspect people think I am embellishing. I am not. Right now, I look like the ghost of Christmas Past mixed with Miss Haversham with breasts down to her naval.

Must remember that for each day or couple of hours down, I am that little bit closer to Christmas.

It dawned on me earlier today, how close I am to my high dose and how close I am to having this level of fatigue again, if not worse, and that the next time I do feel this way, it is going to be more dangerous. I am going to have to sort out the breast support issue by that point for it is not just going to be another cycle at Mamma Jones’ house and I do not know if people understand.

I am dwelling.

It’s my friends’ fault. Rather nicely one was arranging a dinner party earlier today for February. Everybody responded excitedly; I did not. I cannot make plans for February, before then I have to make a decision about whether I have a procedure with a 10-20% mortality rate, shave off my hair and try to tone down my irrational vat of self pity that people are forgetting just how seismic this all is….

It’s all going to be okay though. Do you know how I know it is going to be okay? Last night, for the first time since I was diagnosed, I used the whole bed. I did a starfish. On my back not front, but still. Baby steps.

EJB x

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The Apocalypse

Tomorrow marks the end of the Mayan Calendar and some fear that this will be the end of the world as we know it. There are several reasons why this would be of interest for somebody with a cancer with no cure.

Firstly, and most obviously, we all die. Well, most of us. If this happens, none of my love ones would have to see me die, and deal with it, we would all be dead together. Those who survive, would be so upset about several people dying, I would be but a speck on their thoughts. This would be preferable to just little old me, coming to the end of the line of my fight with cancer treatment, which if that did happen, would cause, I imagine, a national day of mourning.

Secondly, if the apocalypse does come, and I manage to find my way into a bunker, I do not have enough drugs to last me for more than a month. I would be on borrowed time. Borrowed time without the chemotherapy and borrowed time because the people I am in the bunker me would murder me after a few days without my pain medication. If they then ate me, they could get myeloma. Maybe I just wouldn’t tell them.

Thirdly, those with myeloma cannot really run or manage large hurdles. If the apocalypse was a gradual process, rather than say, one where the switch just goes out in an anticlimax, I would be one of the first to die. I have always said it. I have watched ‘Independence Day’ enough times to know this much. I have looked it up in the dictionary and I know it was not the apocalypse, but if I was on James Cameron’s ‘Titanic’, I’d be one of those people who hit the propeller before landing in the big tank posing as the Atlantic. If the actual apocalypse happened slowly, as the current rain suggests, you just know that I would fall into the crater created by the earthquake inside my flat. Or, let’s imagine a tree were to fall in my vicinity, I would not be able to jump over it or dodge it. I’d either be crushed or break my neck tripping on a twig. At least it would end quickly.

Finally, if a disaster did happen, in those last moments on this world, I would not be able to tell the people I love just how much I love them and how they make me feel. Those people would go to the grave without me warming their hearts further. Shame.Should I start calling them now? I probably would regret that on Saturday wouldn’t I? I wouldn’t even be able to blame it on the booze. I find the best way to get through life is to bottle such things up and hope that the people who touch my life know it intrinsically. This is what I hope at least. I don’t know if this is the reality.

Obviously, I believe all this hysteria to be a load of old tomfoolery and the people who fear it, should be thankful that their body is not waging a war against their being. When I actually stare into the face of possible death at the end of January or February, at that moment, outpourings of truth and Hallmark feeling are not anticipated, maybe just a few group emails.

Be Safe People. Hug and Embrace. If that fails, just have a beer.

The end of the world is not nigh.

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The Cost Of Cancer

Once you have processed your diagnosis and your treatment, it is unfortunately necessary for one to deal with the life admin. Despite being stuck in this inexplicable twilight and having to come to terms with a diagnosis and prognosis, which is beyond unfathomable, I have had to learn that life goes on. Everything that existed before, continues to tick over. Bills, pay, money, living costs; these things still continue even though you have cancer, and they have to be managed because you hope at some point, having a bad credit rating will matter again.

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I have probably spent three months with my head stuck in the sand about much of this. Coming to terms with My Myeloma was enough to manage, without me beginning to consider how I could and can financially survive, maintaining my much needed level of comfort, whilst trying to survive within this bubble of cancer. I am now at a point where I have to deal with my finances. Cancer costs, in more ways than one.

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Thankfully, I am in a better situation than most. I am an employee, and my employer does take care of people like me and even others, who could do with a healthy dose of humble pie. Last week I had an occupational health referral and the lady on the other end of the phone was most perturbed, to begin with, about me continuing to do work when I feel able to do so. It did not take me long to get across the importance and weight my work means to me in my life. Continuing with some normality, for somebody who has had a job since they were 11 years old. In those early years, staking shelves really was a hoot. Continuing my work is not just about my sanity, it is also about me, continuing to give back and support those I respect. Despite me winning her over, or appearing to win her over, there is still a high probability that in the new year, I will move onto half pay. Six months really can fly when you are not having fun. I live in Dalston and I am a civil servant. Half pay will cover my rent and approximately two third of my bills. That’s it. It will not cover my food, my online entertainment services and my occasional acts of generosity. It would be a fair assessment to say that I have discovered Ocado and high end branded teabags at the wrong point in my life.

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Ever the pragmatist, this last week, I have started to investigate what Government funds are available to me. Once again, Macmillan Cancer Support have shown their worth in this area. For somebody who has never claimed any benefits, it looks and reads like a whole load of gobbledegook. I suspect I work in the right Government department, because the Department of Work and Pensions would be lost on me. I am surprised so many people are actually in receipt of benefits. The forms are endless. Take the Disability Living Allowance, the form, for which I could get Β£20 per week, is 42 pages long and has to be accompanied by evidence that I am sick and a list of things that I can and cannot do including the number of meals I can cook myself in a week. Crucially, microwaveable meals do not count as cooking. Phew. I am also going to apply for a Blue Parking Badge, just to save my legs and back on the occasions when I am am able to go to a shop and somebody has a car. Then the worst case scenario, is applying for Housing Benefit, if I do end up on half pay. I haven’t even begun to look at that form yet. Thank goodness for the welfare state.

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When I was first diagnosed, I thought I would end up saving money. In reality,this has not happened. I took a slight pay cut because I am not able to do some add on work, and in these dark times, sometimes, just sometimes, I just need a little pick me up. Some lipstick, some food or a taxi. Just things to make my life easier and keep me sane. I imagine these little perks will have to stop in 2013.

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Everything costs. Everything.

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Just keep paying your taxes people, because out there, there are some people like me, who actually need the help, and I am not even thinking about the NHS right now although clearly, I need that little beauty too.

EJB x

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