I was tempted to entitle this blog ‘My Life Lived in Fear’, but after some reflection, I decided that some could perceive that to be melodramatic. That said, I am prone to a dash of daily sensationalism, so I couldn’t not tell you. The blog’s working title concisely and accurately summarises this current stage of my life. I am left in no doubt that if somebody were to make a mediocre biopic about my life, it would be described as a paranoid melodrama. I am constantly, metaphorically, looking over my shoulder readying myself for when the other shoe drops. Since August 2012 so many shoes have fallen out of sky, walloping me on the head during their decent that not expecting another dreaded, earth shattering wallop is impossible. Unlike the previous shoes, the next one will be the last one and most dreaded. The next one will to be steel capped.
Wait, I am getting ahead of myself…
March and April seem to have past me by in a post flu, get my life back on track sort of haze. March was taken up with such intense fatigue that I really did not notice the month passing. I felt things improve in April, celebrating when I realised that I had managed to spend nine consecutive hours not in my flat, and survived. Progress, I thought.
Medically, as far as I am aware, I could not have asked for a better response to the transplant. It is difficult for me to write those words, as they are words that really ought not to be uttered. I do not want to tempt fate. Five weeks ago, after inspecting my results and my mouth, a Medically Trained Person said that I was in a “Sweet Spot”. For those of you not in the know, this means that I have just the right about of Graft vs Host Disease and my results are good. My initial thought at his diagnosis, was panic. He’s labelled it in such positive terms that he has invited things to go wrong.
Two days later, I pain in my left ribs suddenly appeared. A familiar pain, one that I wished I would never feel again and one that interrupted every possible human activity. I’m not ashamed to say that I panicked at this development. My active imagination was half in denial and half reconciling myself to the inevitable. Except, it was not the inevitable. It was not a broken rib caused by the return of My Myeloma; it was a suspected pulmonary embolism. Two nights in the hospital, two x-rays and a CT scan later, the Medically Trained People found that I had a chest infection. Another infection! Another week and a course of antibiotics later came with the diagnosis of pleurisy, which they say, was probably brought on my February’s bout of influenza.
A reprieve.
A reprieve and a lesson to me not to always think the worst. And yet, those thoughts are never really far away. It’s a daily battle. I do not want these thoughts to be so readily available to me. I do not want self pity to be my constant companion.
I am working on it.
In an ideal world, I would be able to enjoy the Now and not worry about a depressing future. My world is not ideal and there is another side of me that feels torn. I do not want to be underprepared. I described it to my counsellor as a form of self preservation. Before my last relapse, I let my guard drop. I was back at work, I had planned something more than a month ahead and I did not see it coming. I was devasted. My relapse was life changing and it’s consequences went far beyond the physical. Devastated.
Like I said, I am working on it. I do not want this to become I self fulfilling prophecy. I dread the idea of somebody telling me that I brought it on myself by not thinking positively. To people who may think that or have other pearls of wisdom, I say to you, live it. Live the past four years of my life and then tell me how I should feel. Evidently, this is a touchy subject. Even these imaginary conversations make me see red.
Relapse is my main concern but it is not my only hurdle. I went for over three years only being hospitalised for diagnosis and transplants. Sure, there were a few trips to A&E in between but my overnight stays were limited. Now, I have been admitted to hospital twice in a six week period. How will this develop? Will I end up missing more birthdays and Tuesdays in my future because I have a weak immune system? You betcha. It’s an unpredictability that means that my immune system is not the only thing about me that is weak.
In an attempt to turn my frown upside down and reduce my worry lines, I spent two weeks trying to get as comfortable as the bed of nails allows. I really did, and then there was another incident that irritated my paranoia. Enrage my paranoia more like… It was an incident that led to me vocalising my worst fears and led to my family revealing to me that my worst fears are theirs also.
On a Wednesday, I attended my now three weekly appointment at St Bartholomew’s Hospital. At these appointments, they take my blood and my pee and chat to me about my previous results. At this specific appointment, I explained that I could now move without experiencing horrific pain and the Medically Trained Person reduced my dose of steroids; drugs I am given to keep my GVHD at bay. It was a positive 15 minutes, despite the frantic worry I experienced before it when I was told that my appointment would not be cancelled as a result of the Junior Doctor’s Strike. My pre appointment fuss went something along the lines of why didn’t they cancel this appointment when they cancelled a previous appointment when the doctors were striking.* Why? Clearly there is something in my results that they need to discuss with me. Then cue, no constipation worries or sleep the day prior to my appointment.
I left St Bart’s happy. The next day, a Thursday, I had my three monthly appointment at UCLH. A cause for excitement if ever there was one. Approximately an hour before my appointment, I received a phone call from a secretary at the hospital telling me that I had to go in for an appointment. In her confusion, she said I had to come in because my doctor at Bart’s had phoned to speak to my doctor at UCLH to discuss my results and those results had to be discussed with me that day. I took a deep breath and all those thoughts I had been fighting to not have, pounded out from the rock I had hidden them under and sheer, all consuming panic set in. It was a sweaty, shaky, two and a half hours of utter dread. This is it.
When I eventually saw the Medically Trained Person, I had already explained to another how I felt. I was almost manic. I discovered that the Medically Trained Person from Bart’s had indeed phoned the head of UCLH’s Myeloma department to discuss my results. He had phoned to tell her how happy he was with my results. In short, he had phoned her to boast about my results. To boast! It took more than one exhale to get over that. In fact, nearly two weeks on and I still think I am recovering from it.
Never in my wildest dreams did I imagine that the reason behind that phone call was to boast. I thought the worst, like I apparently always seem to do. A revelation that brought along it’s own set of neuroses.
According to my counsellor, all my feelings are normal. I take some comfort in that. Remission does not mean that I am free, but I know that it also means that I should be able to let my hair down occasionally. It’s not long enough for that yet; I’m not a superhero. All I can do is try and my sanity needs that. My new management technique involves scheduling in time for the bad thoughts and then to banish them until the following scheduled time. I have chosen to do this on my commute. This is my commute.
And this is my Sweet Spot. It’s a chemotherapy free, work in progress.
EJB x
