Coughs and Sneezes Spread Disgust

When I am wrong. I like to admit I am wrong. I like to shout it from the rooftops and have it be the headliner of all my interactions for a set duration after said discovery. What am I saying? I struggle, very much to admit when I am wrong, and any acknowledgement, will come somewhat begrudgingly, usually, a long time after the deed was done. Today, I admit I was wrong.

And so, here we are, it would appear that I, Emma Jane Jones was wrong. Last year, I was too quick to judge the attention seeking, social media using public. Phew. I can breathe again. Hang on, I cannot, because I feel like I have plasticine stuffed up both nostrils and goo stuck in my throat.

Last year, I freely criticised those who complained about their trifling colds and coughs like they had been diagnosed with something worse than an incurable form of cancer, and labelled them insensitive. I wish, I thought. I believe, though the recollection is somewhat hazy, that I wished to just suffer from a cold. In the deepest darkest pits of my side effects, I thought that a cold would be a piece of cake, a walk in the park, a breeze. It’s not. It’s just one long wheeze, and I am surprised by how super pathetically, I am managing it.

I currently have my third bug post transplant. I am told that this is pretty normal. The sensation I have felt for the last few days does not feel normal.x I used to function with a cold, I used to like the sound of my own voice with a cold, I used to just plough on and on when I had a cold. With this cold, I am not ploughing on and I am not really functioning. In it’s wake is self pity, paranoia and frustration. After all I have been through, after all I have managed, are you seriously telling me that I can be made bed bound by a cough and a few sniffles? Yes, evidentially, that is the case. I am utterly ashamed of myself. I should laugh in the face of this cold, but instead, I am producing the most disgusting sounding coughs, which I am sure are driving Housemate as mad as they are me, downing cough medicine and imagining that every symptom is a new cancer. That’s the legacy of My Myeloma, everything is sinister.

I know what common sense says. I know why I keep collecting bugs and I know why the linger, but that does not stop me from becoming a moody bum whose sum of daily accomplishments is switching from BBC IPlayer to Netflix and back again.

The post transplant world is tough you know. Post remission world, I am learning, is categorised by setbacks and occasional disappointment.

And having a cold, is one unexpected, major, disappointment.

EJB x

Disbelief

For the last fourteen days, I have wandered around the corridors of my flat in a state of disbelief, doubting my ears and those belonging to the head of Mamma Jones. When I was bored of that, my brain waited for the other shoe to fall, because in my world, it almost always does. The shoe drops to the ground, damp and covered in holes, and myeloma wins some more in this game we call My Life.

Let’s face it, since the 17 August 2012, my life has hardly been the warehouse party I would have liked it to be. There have been ups and there have been downs. There have been good cylinders and bad cylinders. There has been treatment and after treatment and setback after setback. I feel like my stoicism, made way to a pessimistic realism disguised with a smile and nifty wordplay.

The last 15 months have not been easy, just in case you were in any doubt. Anybody who wants to know that can know that, because I have recorded them for all the world to see, accompanied by a plethora of grammatical errors and melancholy. The fault there belongs to the drugs and not to me, I assure you. I was once as hard as nails.

The last 15 months has changed me irrevocably. Sure, much of the old me is still about, but to be dramatic, I am not what I once was and nor will I ever be. My Myeloma and me will be forever entwined; the blood sucking, life zapping, filthy bastard that it is. We’re together now and that is how it has got to be.

Two weeks ago, I heard something, four times, that defied my expectations. Unlike many people, who I wanted to greet in a dark alleyway with a pair of nunchucks when they opened their mouths or touched a keyboard prior toy transplant, I did not believe that my transplant would give me a remission. At some point, I was told that in all likelihood, this would not happen. To protect myself, that is what I had to expect. After the dogged stubbornness of my disease, the chances of my transplant failing right off the bat, were high. And still, I went in fighting, backed up by my Support Network, waiting there like a fleet of Lancaster Bombers, with teddy bears on board to protect and comfort me.

And here we now are, back to that pesky disbelief. I did not want to write it down for fear of jinxing it, thinking that I would force the gods that be, the Medically Trained People that is, to shout “CORRECTION, it’s not over, we’re giving you another round of treatment because we have to, and thus, you cannot resume your life.” I definitely did not want that to happen. I do not want it to happen.

I may have uttered the words to one or forty people close to me, but I have not believed them. At a time when I imagined I would be singing and dancing and prancing, I walked around like I was suffering from concussion. I cried. Even Mamma Jones drew a tear and that just plain freaked me out. I have made practical steps that somebody in my position might do, like plan a return to work, spend a few nights pretending I am 21 again and slept, but it did not sink in. I would not let it sink in until I received it in writing. Until I had the proof I needed to know that for however long I have, that I am in remission. There I said it. I am in remission. I don’t think I am in remission. I am. It’s not how I imagined it, nor did it come as quickly as I had wished, but it is here. I now have evidence that there is no evidence of myeloma, and that made my day yesterday.

I am in remission. I might just say it again, because even with the proof, I still don’t quite believe it.

That damp, dirty shoe is going to fall at some point in my future, but for now I am going to exhale like I have never exhaled before and relish in this feeling that after 15 months of illness, sickness, treatment and limbo, I am free. Well, as free as I am ever going to be from this. And that fact makes me do something I had yet to experience and that is to cry rivers of joy. Joy and relief.

Those of us unfortunate enough to have myeloma know that the magic word of which I speak does not mean a reversal of fortune and a physical rewind to a pre myeloma life. Everything that poisoned my innards, has left a mark, and now the challenge is to learn to live with that. I still experience pain, I am still in recovery following the Big T and I am still required to attend the hospital and receive the fortnightly injection of Velcade. This is why we are intertwined. The story goes on, and hopefully, on and on and on.

In time, I will learn that this first all consuming 15 months were only part of my story. I have to learn to live with My Myeloma now, I have to properly enter the big wide world and discover my limitations and exceed its expectations, and I hope that I will continue to be surrounded by the people I love for the ride.

Right now, however, and I mean right now, at this instance, I can officially say that after so much, so much time, so much pain, so many needles, so many stem cells, so many drugs, that this chapter, this volume, this tomb, and whatever else I have called it, is over. It’s done. It’s closed.

The only thing left to say is, my name is Emma Jane Jones and I am in remission.

EJB x

To be continued… For sure.

The Numbers

I am trying not to live for my paraprotein result. By live, I really mean, I am trying not to dwell on my paraprotein result. Bloody numbers.

I have spent months waiting for the result of that monthly test, where a few points up or down can have epic consequences. On the one hand it goes down and I got a Christmas with my family, on the other hand, it goes up and before you know, I am back watching my paraprotein level, sweating at the thought of it like I am finding out my A Level results all over again. The anxiety this causes cannot be good for me, maybe good for my bowel, but really, it isn’t good for anything else. The thing is, try as I might, I am always going to fixate on the result.

The Medically Trained People told me not to worry and think about it, but when my paraprotein level is the indicator they go by as to the success of my treatment, how could I not worry about it? Don’t worry about your paraprotein, but it does need to reduce by half for you to go to transplant. Okay, sure thing, now just excuse me, whilst I remove this elephant from the room.

In this area, I want to be a medical marvel. I don’t want to be known as the young lady who got myeloma, I want to be known as the young lady who got myeloma and responded astoundingly well to her drugs and was cured. Alas, that is not a test I can study for. If only I could. My body does what it wants regardless of what the best thing for me is and intellect has no weighting here.

I’ve been pretending I am indifferent to the results, mostly because failure scares me. I failed once before and now, I just see the stubborn figure as a big fat major. Every time I think about my paraprotein level, I think about failure, my mind goes into a spiral with thoughts that do not need to be repeated here. Bad thoughts.

The issue I also have, is that I don’t know what is a good or bad result. I have already been through this once before, so I know that any improvement (see what I did there, positivity)is going to be slight. As much as I would love to fall asleep, have my blood taken and then three days later find out that I have had a reduction of 15, I know it is not going to happen. My paraprotein level takes things slowly, like my erm… metabolism. So, I have to take any improvement as a good sign, as hard as it is for me to get excited about a point here or there. I don’t get excited about it anymore, because even if it goes down, it is still there. I get my exam anxiety pre-results because there is always going to be a part of me that wants to be the medical marvel. I cannot stop myself thinking that, thus anything that is not that, is a big fat letdown, even if it is a move in the right direction.

So, with that in mind, last Friday I found out that my paraprotein level had reduced by a measly three during my first cycle to 23. I am not excited about it.

EJB x

Resolutions

Hello 2013. 2012 is dead.

It is customary at this juncture, for one to make resolutions in an attempt to improve their quality of life. I have no quality of life, so there is no need for me to make any resolutions. There is one thing and one thing only I want to happen this year and no resolution from me is going to make it happen. I suppose I also want a cure for myeloma, but at this point, I would just settle for remission or whatever it is called for those of use with myeloma. Please. Really.

Clearly, I was joking when I said I had no quality of life. I meant to say that nothing about me needs improvement apart from the cancer inside, and I can do nothing about that. That is why I do not need any resolutions. I am almost Mary Poppins, practically perfect in every way, my Mum told me so. As I do have extra time on my hands these days, I have time to observe, research and ponder. I now know that there are people out there who do need some minor improvements, but are too busy to think about how they can better themselves, so I give you me at my most altruistic, and below I have drafted a few suggested resolutions, which I think could make your 2013 better. Feel free to tweak them as you see fit.

Now, I know you may have already sorted your resolutions for this year or think that they are a pile of hooey, but it is not too late. I am constantly being told how many people love or like me, so you know it makes sense to listen to me. I am Yoda.

1/ Live each day to the fullest, for you do not know when your ability to do so will be taken away. If this means you want to spend your weekend watching television, then so be it. That takes me to my next point.

2/ Do not judge. Or failing that, keep your judging to yourself. The latter works for me.

3/ Donate money to any form of cancer research.

4/ Be 50% selfish. Everybody needs to be selfish, but only partly.

5/ Must not complain of minor medical ailments as if they are like the worst thing that could happen, like ever. There is always somebody suffering from something worse than you. Grow some.

6/ Save money for a rainy day/take out life insurance. It’s only practical.

7/ Get a donor card. Give blood. Give away your baby’s chord. Do anything that can benefit the sick without interfering with your life too much (see point 4).

8/ Be a fan of all forms of stem cell research regardless of the ethics (see the first half of point 4).

9/ Stop smoking. Just because…

10/ Watch at least one non-Disney film made before 1980 a month. Educational.

11/ Don’t go for second best baby, put your love to the test. You know, you know, you’ve got to make him express how he feels and then you’ll know your love is real. Express yourself.

12/ Embrace your sensitive side, so you can read number 13 without retching.

13/ Put a little love in your heart.

No need to thank me. You are most welcome.

Happy New Year. 2013 will be where it is at.

EJB x