The following was written some time ago, but unfortunately, I live in a world full of germs and I caught Influenza A and subsequently forgot that I had written this blog, let alone that I needed to post it. It seems a shame to waste my ramblings; so close your eyes (then open them again so you can read) and take yourself all the way back to December 2016:
You may think that Christmas was so last year, but as today is the 10th Day of Christmas, I think I can just about sneak a blog post about Christmas under the radar. Plus, ordinarily I love Christmas, so it would be remiss of me after a year of blogging very little, to not recognise Christmas as it is a pivotal part of my annual calendar.
This year, things were different. I found it incredibly diffficult to get into the Christmas spirit. The Christmas spirit usually comes so easy to me. The drugs seemed to have sucked all the energy out of me, preventing me from participating in some of my favourite Christmas activities. Thus, going through December, I was not seeing combinations of red and gold and getting goosebumps, I wasn’t singing O Come All Ye Faithful in the shower. I felt nothing. I know what the main cause for my humbug was, and it opens one up to saying a crude but well timed joke about George Michael; was this, 2016, going to be my last Christmas? I’m not plucking this negativity from the air by the way, there’s a genuine (outside) chance that it was. With that seed planted, what Hope was there to have an innocent, Myeloma free Christmas?
So, when it came to making my beloved Christmas cards, cards that I had designed and invested time and money into, and had been thinking about since September: I just couldn’t do it. For at least three days, I slept next to all of my craft paraphernalia convinced it would help me complete them. It’s a similar strategy I employed at university walking round with the biography of Menachem Begin for six weeks, hoping that it would go in via osmosis. It didn’t work then either. Comparing the feeling I had to university stress is apt. The enjoyment I was gained from this activity, had passed. All I felt was undue stress.
I argued with myself for three weeks. You enjoy it, Emma! Pull your finger out, Emma ! Everybody is expecting them! You are a failure! That was one side, the other side just rolled over and fell asleep. It seems like such a mundane thing to get so upset over, but upset I was. Every year since I was diagnosed, I have made my own Christmas cards. Last year, I made and sent over 50. Was the fact I could not do them a sign that medically, I am detiorating or had the Grinch simply stolen my Christmas?
I cannot answer those questions, but on top of not making and sending Christmas cards, I also failed to do any Christmas themed baking or make the additional decorations for my tree I had been planning for months. The weight of each of incomplete activity, was unfathomable. Is it really possible for me to have an enjoyable Christmas without all the planned activities I once deemed to be fun?
I refused to give in. I sought any excuse for my humbug that did not involve Myeloma and the makings of a bad TV movie. It must have been somewhere. The search felt endless. Could my lack of festive feeling be due to my age? That’s never been an issue before, so Veto.
Due to financial restraints brought on by not working and being on benefits , I was unable to buy many Christmas presents. Thinking about what gifts I can buy my loved ones and wrapping them up in a style to suit the recipients personality, has always been a Christmas highlight. But alas, that was no longer open to me. I found that I did not even have the energy to think about presents.
What about work? I thought. My experience of working in an office is that during the month of December (and the back end of November) there would be at least one discussion a day about Christmas. Work drinks, family drinks, Christmas presents, wrapping; the talk was endless. Despite forcing myself to watch endless Christmas movies, perhaps my failure to socialise with colleagues, buoying each other’s festive spirits up day in day and day out was the cause of my sadness. 2016 also marked the first Christmas I had not been invited to a work Christmas Do since I was 14.
Could that really be it? Had being forgotten by my work colleagues ruined Christmas? In short, no. Veto. I was invited to the Christmas party last year and chose not to go because I could not afford it, and I did not feel any the worse off. Like last year, my free time has to be used and planned carefully. I do not have seven days and seven nights to play with anymore.
It would also be wrong not to mention the level of pain I was in during December. I was in a lot of increasing pain, which on many a day, prevented me from moving. I don’t know how responsible it is, but my chronic pain was definitely guilty of ruining some of December. Upon return to my mother’s I discovered that I could no longer climb stairs without using both banisters. Yet another sign of deterioration perhaps?
Somewhere around the middle of December, coincidently, the day Rogue One was released, something strange happened. I uttered the words out loud that I was not going to be able to complete the cards, Mamma Jones told me it did not matter, and I began to relax. I really relaxed. My dear sweet Mamma lifted the weight off my shoulders at a most crucial time. Socialising time.
The 16 December launched four days of back to back socialising, which believe me, is now something very hard for me to do. I was suddenly busy and somewhere in that busy-ness, and laughs with my friends, I stopped dwelling. I stopped yearning for what once was and I began to enjoy myself. I smelt satsumas, mince pies and sang along to the Muppets. Finding my way out my slump gave me goosebumps.
And then, there was home. Home. Aware, at least I think they were aware, that I had been on a long Myeloma Downer, my family pulled out all the stops (at least I think that it was intentional). Christmas itself was marvellous. For the nine days I was home, Big Sister and her offspring were around for eight of them. I felt loved. The time went so quickly, that when it came to New Year’s Eve, I did not want to leave my family. For leaving meant that Christmas would be over and we might not know another one like it.
Before I move on, anybody advising positivity, believe me when I say that I do not want my fears to become a self fulfilling prophecy. My fears are real and I cope with them by voicing them, much to the chagrin of my loved ones. I see things more clearly this way.
I did not intend to enjoy Christmas. I had been so worried that it was going to be my Last Christmas, that I was convinced I would find every tradition, every action, melancholy. Melancholy doesn’t cover it, I thought that every tradition, every action would rip my heart out through my throat and lay it bare for all the world to see. Thankfully, that did not happen.
This photo clearly shows me unwillingly embarking on my journey back to London Town.
For me, our Jones Family Christmas worked so well because everybody, well all eight of us, was home. At no point was I stuck in the middle of nowhere with nothing to do. Between Mamma Jones, Big Sister and my neices, I had plenty to do. We did things together as a family and had family fun; I wanted to bottle the feeling up and savour it.
I do wonder, with the benefit of a few days of hindsight, if it is possible to have a Christmas without the feeling that it will be my Last. Should I have just saved this blog for next Christmas? It’s the unknown. Everything from here is unknown. I do know that things are changing, I can feel it in my aching bones. I was aware as of the 22 December that my treatment is going to change at some point in the near future, meaning my current treatment is failing. We are running out of options. Another daily thought that added weight to this theory of doom.
I spent my New Year’s Eve with some friends, doing things that adults do like watching Jools Holland, eating nibbles off paper plates and playing board games. Somehow, I managed to stay out until 4am. I don’t think I did that for all of 2016. To fast forward, I did not have a hangover on New Year’s Day. A success by no stretch of the imagination.
For the evening in question, I had managed to surround myself with good people and there were a few times during the evening that I could feel that hand approaching my heart again, ready to detach it from my body. I really am full of emotions these days. I don’t want to repeat earlier paragraphs, but essentially high from my visit home, now surrounded by friends I love, I wished that this was not my last New Year’s Eve.
Despite being asked the question, I did not make any resolutions for 2017. I do not see the point, not for me anyway. Every time I was asked about resolutions or plans for 2017, my answer was the same. I do not want to make noticeable changes. I want to keep on living. I want to be able to do what I am doing, maintain my freedom. I want to enjoy my friends and my family. Most of all, I want to be able to make the most of my good days and get through the bad.
Perhaps these are resolutions after all.
And this is where the writing stopped and the flu took over. It took over for a whole fortnight, marking a great start to 2017. I know what caused the flu (New Year’s Eve) and who the culprit was (Nameless). I still would not trade NYE’s, despite the vomit and general foulness of the flu. I was ‘living’, right?