Many people can be forgiven for being under the impression that I spend all of my time, idle, lying on my sofa neglecting my looks and my blog, whilst wallowing in self pity. The truth is, that only accounts for 80 percent of my time. The rest of my sick leave is spent doing a myriad of exciting things that one day, I will find the time and brain function to tell you about. In the last week however, I have managed to devout approximately 10 percent of my energy to altruism. That’s right, altruism, for I, Emma Jane Jones am altruistic. I definitely did not do the things I am about to tell you about, so that I had something interesting to tell you about. I did them because at my very core, I am good and, I am selfless.
You have all heard the saying charity begins at home. Well in the last week, charity for me has actually meant thinking about me and only me. That’s home right? There has been a great deal of reflecting and delving into my personal world of myeloma, producing 2666 written words, one bout of insomnia, a photo shoot and the ability to speak to a room of medically trained people whilst wearing leather and having a hot flush.
I am yet to conclude whether these exercises have been healthy for me, but that is how I know that I am really an altruistic bunny rabbit requiring praise and awe. I have done two things for charity that you could say were difficult for me to do. They were difficult for me to do. On here, I only really talk about my current feelings. I rarely attempt to see a bigger picture. However, in two different ways, for two different charities, I have done just that. I have recounted and explored my journey from when I first felt a tinge of pain in my back to where I am now, which in case you were wondering, is called limbo. I rarely look back at my treatment, because my focus has to be going forward, and getting through the day when I do not know what forward looks like.
Looking back, firstly in words for Myeloma UK’s newsletter, was overwhelming. I did not expect to be overwhelmed, but I was. I don’t need to recount my considerably over the word limit story for you now (for that will indeed come), to say that it invoked some emotions that I would rather not have felt. It was one thing for me to recognise my stoicism and I do, it is quite another to see perhaps the mistakes I have made since I was diagnosed and to relive some of the nastiness I have encountered along the way.
The activity was accompanied this morning by something else that I would describe as ‘challenging’, but challenging on the most superficial level. This morning, in my flat, I, along with the dog, was the subject of a photo shoot. Not just any old mobile phone photo shoot after a few brewskis; this one featured an actual tripod.
When 80 percent of my time is spent being idle, the physical expansion of the my body is no surprise and being the main subject of any photograph, is now, not what I would describe as fun. It’s the end product that puts me off. Housemate however, seemed to find my posing quite funny, especially when I did so in front of some meringues. That’s right, meringues in a tin.
It’s fine though, I think the difficulty I had in producing a genuine smile, will just be interrupted as constipation. That would be no lie in any tale about myeloma treatment.
The second of my endeavours this week, was for the little known charity fond of a coffee morning, called Macmillan Cancer Support. Some weeks ago, I was asked if I would be willing to share my story with some of their helpline staff, who were travelling to London to do some specialist training on myeloma. Maybe this is not that altruistic, but I was so pleased to be asked, I could not say no. In fact, I think I almost looked forward to it.
On Wednesday afternoon, I made my way to Huntley Street and sat through one presentation by a Medically Trained Person on myeloma treatment and escaped before a second person delivered one on stem cell transplants. I did not think my mind was strong enough for that, when an hour later I was to address the room on my many side effects from before diagnosis to my present. And address them I did, warts and all. Beforehand, I had discussed what I was going to say and I thought about it many times over and I almost remembered everything I had planned to mention. I did forget to say how my forgetfulness causes much frustration and difficulty in my everyday life. Go figure. I did not forget to talk about depression, isolation, friends, fertility and faeces. As you can imagine, it was a barrel of laughs. It was also very honest.
The person who planned the training said that I provided a human face to all the technical jargon they had sat through earlier in the afternoon… I am not one to toot my own horn [often], but I think my comments were well received, that, or they just felt sorry for me.
It’s Friday night now, and I have decided that now is the time to revert back to looking out for Number 1. Número Uno. Me. I am tired now.
Who knew that talking about oneself could be so selfless?
I have always wanted to be a do-gooder. If I was not superstitious of having a bucket list, I could tick that right off. Um, I do not have a bucket list, so I will just say that it feels so much better than a monthly direct debit… Hang on, does that make it just a little bit selfish?
EJB x
P.S. Did you know that the people on the Macmillan helpline are trained nurses? It’s true.
