Tag Archives: fun

Another Year

One can quite easily romanticise the eve that is New Year’s. In anticipation of an unknown future, it is very easy to hope for better things. If you think I am generalising, I might well be, for I am really talking about me. I am guilty of romanticising New Year’s Eve. If the outgoing year had been a good one, I’d go out on a high and expect equally good things for the year ahead. If my year had been rotten, I’d grasp onto the old adage out with the old and in with the new, hoping that as the clock turned from 23:59hrs to 00:00hrs my luck would magically change. It’s a silly concept really, I know that it is just another day, but there is still something inside me that says a new year should mean some sort of new beginning.

This year, as 2014 finishes and 2015 begins, I have a problem. It was a problem that was presented to me on 18 December and one that I had been aware of long before that date. It’s a myeloma related problem. My problem is fairly straightforward in it’s complexity. I know what my 2015 looks like already, well at least the first 6 months of it, and it is not something I particularly want to get sloshed in anticipation of this evening. Not only do I know what the start of my year holds, I know that I can do absolutely nothing to influence what is going to happen. My future is completely out of my hands. It is just going to happen and the only thing I can do, is hope for a happy outcome.

On the 18 December I finally found out what the medical plan is for me and it is a plan that involves a lot of pyjamas. It is a plan that means my 2015 is going to revolve around feeling unwell. In fact, the only thing I have to look forward to, is another old adage; 2015 for me, is going to have to be seen as a means to an end.

After another cycle or, possibly and hopefully two cycles of treatment, so in four or eight weeks time, I will be having a stem cell transplant. Not a donor transplant as I had anticipated, but an autograft. I’ve done it before, so I know how delightful they can be. Then, two or three months after that is done and dusted and my curly hair is no more, I’ll have a full donor transplant. I anticipated the latter, but not both. Both does a poorly Emma make. If my calculations are correct, that’ll take me up to at least June. Just like that. Six months will be gone. If all goes to plan, I will then spend the rest of the year recovering. I have done my research, and I am aware that the recovery from an allograft is no picnic and I know that I am being optimistic allocating six months to it. That six months by the way, will take me up to 31 December 2015.

I have never experienced a New Year’s Eve where the year ahead is already determined. I have never experienced a New Year’s Eve where I have hoped to fast forward to the next one. This year, I have no need for resolutions, unless ‘Do not die’ can be considered a resolution. I have no need for the January sales, unless it is for nightwear, because I have no idea what is going to happen to my body over the next six months. I have no need for plans post February because realistically, I know that I’ll be spending at least 10 months in bed.

My New Year is going to be completely dedicated to myeloma and I know that is not an exaggeration. Things may happen around that, good things I hope for the people around me, but predominantly, my year will be dedicated to ‘getting better’. Whatever ‘getting better’ looks like.

My 2015 is going to be dedicated to some intense treatment that will test me. It’s going to test me real good. Of course, what happens with this treatment is not completely determined. There is a massive elephant in my head that makes the end of 2014 and the beginning of 2015 quite terrifying. So terrifying, that I would like to stop time and stay in 2014 for a few more weeks. I know that as the countdown begins, a much bigger countdown will also begin in which I will stop floating along waiting for something to happen and I will walk straight into that something happening. It is quite daunting.

I have spent a few days now pondering what 2015 will bring, and the only certainty I have for me is that it will bring illness. I do not cherish that thought. I do not cherish some of the uncertainties of my future treatment either. I just have to hold on to the idea and faith, if I were to have faith in something it would be this, that some of this uncertainty will result in good things. Better than good. I have to try not to dwell on what will happen if those unknowns are not as positive as I need them to be.

Yesterday, I was reminded that in this dastardly life of myeloma, one (that would be me), needs to continue to hold their head high. One needs to be positive and one, when the situation looks like it can get no better and may not get any better, can be strong. The ground has been laid and I suppose, as scared as I am of it, I just need to step to it. A marvellous person showed me that this could be done, and thus, I have to endeavour to not feel sorry for myself despite knowing that 2015 will be the opposite of fun. I am lucky to be able to have this treatment in the first place.

Thus, I’m convincing myself when I say to 2015, Bring It On. That’s right, bring it on. Two transplants? Bring it on. Lots of time in bed? I have many pairs of new pyjamas.

So, I’ll be drinking responsibility to that this evening… I’ll also secretly be hoping that at some point during 2015, my luck, will somehow, with the help of one or two or a million plus stem cells, change for the better.

In the meantime, I wish you and in particular my friends and family, a very Happy New Year. 2015 is going to be a riot.

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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The Roller Coaster

It is something that has been in the back of my head since all this nonsense started, but this last week, I finally acknowledged the sad truth. I, Emma Jane Jones will never be able to go on a roller coaster again.

[sigh]

Sure, I was not going on one every week, but I enjoyed the occasional trip on a thrill seeking adventure ride. I do not think I am the sort of person to grow out of it. I know this because Big Sister is older than me and she went to Alton Towers last week. I was quite jealous.

As with anything I am told I cannot do, I want to do it even more. I want to be strapped in, spun around, go upside down and more than anything I want to feel that nervous anxiety in my stomach just before the ride takes off and then again when you come off it and wait to see how hideous one looks in the photographs taken at the worst possible moment. In this circumstance, I usually look like I am pushing out something really big whilst being incredibly comfortable with my double chin.

It is indeed sad that I am now one of the people to whom the warning sign at the start of each ride’s queue, applies. I have a known back problem. Sensibly, if I will not step outside my front door when it is icy, I am most certainly not going to run the risk of paralysis by giving in to childish fancy. This sort of thought probably goes against the key principles of the roller coaster. You are not supposed to think about being a grown up when you are going on something designed to make you feel sick.I have to. And that is the sad truth.

The most frustrating thing is that I spent a period of my life, morbidly obese and thus unable to go on some of the really scary rides because I could not fit in the seats. That my friends is a very embarrassing true story. If only I had known what was to come. Potentially, I would have lost weight sooner and taken up residence at Thorpe Park. After I lost weight, I got to spend a wonderful three days with my family in Disneyland going on all the rides they had to offer and stuck two fingers up at the Tussauds Group, by giving them my money and going on all their rides. It was so much fun, it is was mindless and I felt free.

Now, My Myeloma dictates that this sort of fun is no longer possible for me. Unfortunately, any thrill seeking is going to have to be done by broadening my mind. Fun.

EJB x

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Working With The Man

What is this? I have a laptop bag, a Tupperware full of soup, a lanyard in my handbag, I looked out my clothes last night, there is a meeting in my calendar and I am two hours later than I intended… I must be going to work today.

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Lustful excitement

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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 £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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Half Term

Over the last two days I have thoroughly enjoyed not feeling unwell. All being well, I have a further seven days of feeling well ahead of me. YES! I have no treatment this week.

No drugs. No drugs. No drugs in my body. Correction. No treatment drugs in my body. Pain control and the protectors will be entering my body, but they do not make me tired and they do not make me sick. YES!

I am only in the hospital once, on Wednesday, and although I will hear some difficult things during this appointment and I anticipate that I will hear more on Friday when a decision is made on my treatment, I have little intention of letting these things ruin my week. Sure, I may be saying something completely different on Friday when we find out about the paraprotein, but I think I am prepared for whatever happens there. POSITIVITY!

So, over the next week I intend to do some of my beloved work, catch up with my correspondence (you really get a lot when you have cancer, it makes you feel dead special), write some humorous blogs, go to a daytime screening of ‘Skyfall’, see my friends and attempt to be a better friend than I have been of late.

I literally cannot wait and I want to savour every moment because I know that it will be another three weeks before I feel like this again. Bloody cancer treatment.

EJB x

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