I thought that my time off would be easy. My body is not undergoing any treatment, my energy levels are high and I am no going to the Centre every day. It sounds heavenly and I am sure that there are many people who think I am fine. The truth is, that this time has been far from easy.
I cannot really say how difficult I found my diagnosis and PADIMAC, I know I did, this blog tells me so…. I can say that I have found this limbo equally as difficult, though fortunately, over the last week, I have been able to come to terms with the challenges I have faced, both actual and manifested.
A bit of time off is a gift. It’s true in general life, but when one is undergoing cancer treatment, a bit of time whilst you are feeling well is more than welcome. A bit of time. Six weeks off is too long. I constantly feel trapped, I feel trapped in my flat, trapped by my body, trapped by the schedule and trapped by my situation. I have gone from having a full time job and an active social life pre cancer, followed by a hefty treatment schedule, to nothing. I wake up everyday and find motivation difficult. While somedays I do have plans, this limbo has seen me spend a lot of time by myself. More time than I care for. I am no mathematician, but I wager that on average, I spend 80% of my days alone. As boring as PADIMAC was, I saw more people than I do now. I had drivers, nurses and Macmillan Support Workers to bug when I had conversation aplenty. I’d store it up and unleash the beast. In the last six weeks, I have found myself in frequent conversation with myself. We get on well, but it is easy for us to create dilemmas. Us Geminis really are drama queens.
I find myself now, yearning for the end to this volume of My Myeloma. It’s more of a fantasy. I spend this limbo fantasying about all the things I am going to do when the myeloma is sleeping. I look forward to things. I have one target right now and that is not making sure I get out of bed before midday or ensuring that I have some structure to my days, the target is just to be normal. Try as I might, this time, although it offers glimpses of normality, it doesn’t offer me everything. I am restricted by my mobility, by my funds, by the schedule and my My Myeloma. I want everything. I am excited about the day when things get back to my new normal. EJ plus myeloma. I’ll make it work, I just cannot make it work right now.
I make plans in my head and these I look forward to. I look forward to a life where the main protagonist is not medicine. Medically, at this moment in time, I have nothing to worry about because nothing is happening. Now, if there is something or I perceive there to be something afoot that can effect my plans and my return to normality, I am devastated. I mean, snot everywhere devastated. Things that previously would have been a minor hindrance or detail, represent the end of something gigantic and dashed hopes. Predictably, this makes me susceptible to making a mountain out of a molehill.
I do not think I am creating mountains at his current moment, but two weeks ago I was. Whether it was a change to my job or my insecurities at what My Myeloma has done to my relationships, the effect is exaggerated in my mind because I have nothing else to focus on. More often than not, things are quickly resolved and become mere folly. I need to learn that the sooner I vocalise them the better. I need to not let things stew, but I do like a stew, just ask my slow cooker. It’s just difficult when there is nothing else…
Fortunately, the end of his limbo is nigh. The time when my transplant is my priority is looming and frankly, we cannot wait.
EJBs x
