As most of us, come mid November are trying to concentrate on the important things in life like the John Lewis’ Christmas advert or Kim Kardashian’s posterior, this Novemember, there is something holding us all back. Something niggling in the back of our minds like an unpaid gas bill… Chill. Relax. I am here to help. That something is the unanswered question, what the blooming jib jabs did Emma get up to in October?
Well, let me tell you. It’ll build up our defences against the festive cheer in our supermarkets.
In chronological order, I went on holiday, I attended many, many screenings at the London Film Festival and then I got depressed, and best of all, I did not want to talk to anybody about any of it.
I can sense your confusion, for two of those things listed above sound like annual highlights for the likes of me. They were. My sadness arose when I asked myself what was to come next and I had no answer. Since my relapse and being signed off work, my long term planning expired on the 19 October. October was to be my month of fun and then afterwards, I would focus on my treatment and my transplant. I have always managed my myeloma like this, in bite size chunks. The problem is, my treatment is unpredictable and whilst this is nothing new, at the moment, I find it almost impossible to plan anything that is not about myeloma. Hell, because of my stubborn paraprotein, we can hardly plan anything related to myeloma either. It made it very difficult for me to see a positive after my last screening. In fact, I felt leaving the last cinema that my fun had just stopped. The limbo and the waiting is not a new revelation, and most the time I am content with that. October’s issue? I knew that I had nothing specific, nothing exciting like a holiday or the London Film Festival to look forward to. They were in my past. My future, as things stand, is uncertain. I do not like this one bit.
I need the a buffer.
I find it very difficult to admit to myself that I found a luxurious holiday and the viewings of 20 arty farty film bittersweet, but I did. I struggle not knowing when I am going to get to do them again. Imagine that for yourself. Worse than that are the times when that specific when becomes an if, and then what you get is somebody who feels quite sorry for themselves who wants to shout crude words as loud as she can and unleash he anger by punching things. Of course, she cannot punch things because it would hurt her back, a knowledge which creates more pent up frustration. Furthermore, when I vocalise these things, I do not just upset myself and I am ever mindful of that. My immediate response last month, was to keep all this to myself.
That approach never works for me, as the uncontrollable three hour nap after a counselling session on 3 November proves.
The enjoyment I had over the first three weeks of October would not have been possible had my body not struggled through my third treatment cycle in September. Keep up with this next bit because it is a complicated timeline involving too many numbers. The chemotherapy had given me a neutrophil count of 0.48 and a white blood count of 1.3 on 25 September, and thus a decision was made by the Medically Trained People to cut the cyclophosphamide out completely for Cycle 4 and halve the Revlimid dose. It does not take a genius to work out that less drugs mean less fatigue. It does not mean no fatigue, however but it meant that I had noticeably more energy for those 28 days.
Cycle 5 started on 23 October and with that came the return of all the strong stuff, the impact of which was almost instant. It was a noticeable change that just happened to coincide with the morbid thoughts. It was a change that meant that I could see the difference between drugs and less drugs, and I do not know quite how I feel about that difference on my life. Also on this date, I was told that there is still no timescale for my transplant. All I was told is that my paraprotein had to get to at least 10 (it was 15 on 25 September), before I could get a referral to the People Trained in Stem Cell Transplants and then, any transplant would be at least two months after that. More and more limbo.
Consequentially, as happy as I was to be able to leave my flat everyday for the ten days I experienced LFF and to walk around the ruins of Herculaneum, I worried that on the otherwise of the coin, I was experiencing a setback in my treatment thus extending the excruciating limbo further. For how was my paraprotein expected to reduce on less drugs when it’s reduction had already started to slow? Was it a case of history repeating itself? These were questions to beat myself up over in the nighttime. And the daytime. All the time.
It has been a few weeks now, and I can confirm that I am feeling better. Less maudlin and more receptive to John Lewis’ penguin. I know the limbo will not go away any time soon, nor will the uncertainty over the success of my transplant and whether that means that I will never be able to leave these fair shores again. I just have to find a way for these facts to not make me crumble. If I am having any sort of crumble when the clocks go back and it is getting cold outside, it’s the sort that comes with custard, not salty tears. As a dear friend told me at 02:00hrs one morning, I have many things I can do to fill the time in this limbo. One day, potentially one day soon, I’ll tell you all about them.
The moral of this story is that there are days when I feel like I am an old pro at all of this and there is nothing that can possibly surprise me, and I think I am managing it all well. Then there are other days, weeks or months, when the melancholy will come out of nowhere, taking me by surprise by squatting in my head, and I feel completely naive and scared. At the start of October I thought I had appropriate defences to protect myself, which included my holiday and sitting on my bum in the dark in a room full of strangers. Evidentially, I was wrong…. It is just the way the cookie crumbles.