2013

Can I really do a review of 2013 two weeks late? The answer is yes, I can do whatever I want to baby, because I ain’t lost.

And so, here we are, 2013 has ended. It came to an end a while ago, I have been reflecting that much about it. It was quite something wasn’t it? 2013. Just insert whatever cliche you want, because that is what I am going to do. For me, 2013 was unequivocally and irreversibly the hardest year of my life. I did not not expect it to be. At the start of 2013, I thought that 2012 was going to remain the hardest year to date, but I was wrong, that honour, at least for the time being, befalls 2013.

Congratulations 2013. You shook me to my core.

2013 was full of many downs until November came and we had a reasonably big and unexpected, up of rather gargantuan proportions. That was nice, except I still do not believe it. The build up to November though, all that trial and all that torment, all those downs, have meant one thing, and one thing only, and that is, that 2013 changed me. The same person who woke up in the early hours of 1 January 2013 sober and maudlin with a paraprotein of 19, is not the same as the person who saw it out drunk with a paraprotein of six, 14 days ago. I am yet to discover whether this change is for the better. Either way, it is what it is.

In review then, I now give you My Myeloma driven, 2013.

January proved to be rather fun, because after the first few days, for the first time in a long time, I was allowed to be drug free. I had just finished PADIMAC, I was planning for my transplant, and I was feeling more positive than I had felt for a live long while, for I had no crash week to anticipate or factor in to my schedule. It also snowed and that my friends, made me sad.

In February, I was heading full steam ahead towards March’s transplant. I was experiencing new drugs and I was getting ready for the chapter to come to an end. It was exciting and nerve wracking all at the same time, all I knew was that I was ready for my autograft. In this month, I also had a little ill advised bump’n’grind on Valentine’s Day, which then caused several months of torment and anguish, because it was a deed done out of myeloma pity and trust me when I say that my self esteem did not like that one iota. In addition to that blip in human interaction, I also argued with a friend and that was not pleasant at all.

March was the month that changed the way I view My Myeloma. With March came the Bad Day and with that news, went my positivity and I do not believe it has come back to me yet. I hated March. In addition to having to put my life on hold for a another four months, I lost my hair and I started a new course of treatment. I really did hate March.

April and May seem to roll into the same months for me, they were dominated by my medication, the steroids and progressively worse fatigue caused by the thalidomide. Oh, it was marvellous. Uncertainty most certainly featured in every waking thought I had during these months too, bar the one day at work I had where I managed to complete a day without thinking about the fact I had myeloma. One day out if 365, that’s pretty good going. In May, on May 24 to be precise, I had a birthday. My first birthday with myeloma and this was a bittersweet affair, despite all the efforts from those around me.

June again was full of uncertainty until it was no longer uncertain and I was given a date for my transplant and the uncertainty was replaced with fear that the Medically Trained People were going to take it away again. March was their fault obviously and it was not the fault of My Myeloma and its excrement, paraprotein. So, for the last days of June into July, I had my fingers permanently crossed.

In July, my fingers were still crossed until I walked into Ambi Care on the 17 July. Despite the fear of it being taken away, I also experienced a very real fear of it happening to quickly. For a fortnight before I went into hospital, I felt that the transplant I had been planning for months and months on end was coming round far too quickly and I remember feeling unprepared. I also, in the weeks leading up to the 17 July, milked the fact I was having a transplant dry. I forced people to have fun with me and fun was had. Essentially then, for the first fortnight of July, I used emotional blackmail to make people be nice to me. It was a nice two weeks. I then went into hospital, had a little bit of chemo, had some stem cells given back to me and pooed by pants. I took a photograph of the incident and I am still to share it with you. Apparently, sharing it would be inappropriate.

Oh and I should probably add that Housemate became a Dad in July and for that little bundle of fur, I would become very grateful.

In August my long, underestimated road to recovery started and for me, this is when I felt myself begin to unravel. From August, my life stopped being all about treatment and it became about living, but it was not a living that I had anticipated before I had myeloma and nor was it a living that I had imagined all those times I lay in my bed dreaming of happier times. I also discovered in that month of being looked after by Mamma Jones and Big Sister, that my Support Network was realistically not capable of doing everything I wanted it to; it was not an easy realisation to have. It hurt, it gave me forehead ache and I am still trying to understand the revelation.

In September I moved back to London and attempted to rebuild my life, and slowly, very, very slowly, get my energy back. I happened to do that in October, November and December and I am still working on it. My improvement post transplant has been much slower than I ever anticipated. Sure, in those autumnal months, I learnt to leave the flat for longer than four hours, but it is not easy. Not easy is an understatement.

Although November was undeniably good, with the small thing I like to call Remission, I discovered that I simply could not rewind to my life before and I have struggled daily with that since. It makes it impossible to remember exactly what I have done since 7 November, because the overriding thought is that living with this is hard. I did not have that in 2012.

On a positive note, I have begun to socialise more, not very well, but I have. I was able to do the goddamn London Film Festival, which made me cry, laugh and sleep. It was, quite simply, my favourite 12 days of the year. Make of that what you will.

December is my recent history and it essentially was a month of trial and error, resulting in a snotty noise and an overwhelming desire to sleep. The latter was something of a theme for me in 2013, just ask my broken bed.

As for my appearance in 2013, well, that changed too. I lost weight, put on weight, lost hair, grew hair, lost it again and then gained a curly mop. I grew a beard. I did not wear any lipstick for a six week period. Needless to say all of this added up to some knocked confidence and the avoidance of mirrors.

This was my 2013. I feel bruised and battered from it, and as I repeat what I said when I started, I feel like I lost part of myself over those 12 months. I like to think that it is not lost forever like one of my hats, just waiting to be found in a drawer or at the bottom of my wardrobe when I can be bothered.

Here’s to a brighter 2014. I long for a brighter 2014. I have a cylinder to overflow.

Oh, I should probably add that as much as I dislike them in their role as the bearer of bad news, the Medically Trained People, specifically those in Haematology, were as marvellous as I have come to expect and for that they have my gratitude. For sure.

EJB x

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2 thoughts on “2013

  1. Terri J says:

    For me Jan.12, 2012 was the worst day of my some what long life(59 years). I was not diagnosed with Myeloma, my daughter was. As a mother you cannot imagine how much I want to take this burden from her. I have literally screamed, punched pillows & thrown things at times because I can not fix this as a mother should. No one can tell me “why” why is this happening to her. She is actually handling all she has gone through better than I am. Of course I don’t let her see any of this.
    On Jan12, 2014 we decided not to recognize this day of diagnoses any more. We are only going to celebrate her rebirth day(Aug.17,2013) of transplant. Though she takes Revilmid & has bone med infusions life has turned around to what it use to be. Although fatigue does still linger.
    On the day of diagnoses if you had told me that life is as good as it is now I never would have believed you. This is all thanks to the doctors & nurses & Sara’s attitude toward dealing with this.
    Neither of you are the same person you were before diagnoses so you can’t go back there but hopefully you can find a way to live with the new you. To 2014- may it live up to its expectations of a good year.

  2. SBM says:

    Oh Emma, I have followed your blog all year, well, ever since my twin brother was diagnosed with this disease in January. You will have no idea how much it has helped me and in turn him understand what he was going through, his transplant was 4weeks after yours. I have thought about you, wished and prayed for you all year as you went through this, and to read about where you are now makes me so happy for you. You have made me laugh and cry a hundred times, so thank you. And as I missed the entire LFF it was great to have your reviews and made me yearn for london days gone past.
    My sincerest best wishes for the coming year.

    S x

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