Today marks three years since Myeloma officially came into my life. It’s three years since that junior doctor cried as she sat at the foot of my bed whilst she broke the bad news to my family and me. Is it an anniversary worth celebrating? No. It is however a significant milestone in my life and one which marked for better and mostly worse, a permanent change in the life of Miss Emma Jane Jones. Put it another way, the 17 August 2012 was life changing. And it wasn’t only life changing for me.
Since that date, I have been given a whole set of new dates to remember, celebrate and dwell. My first transplant on the 17 July 2013 for example, but that failed, so it was not quite the rebirth I advocated at the time. Then there was my second auto on 1 April 2015 and then my Allo on 23 July 2015. Only time will tell if the latter dates are ones worthy of celebration or just dates of mild significance. Mind you, the date my DNA changed will always be fairly significant won’t it?
For me though, this anniversary is the Big One. It’s the one that started everything off and although I wasn’t given the formal diagnosis until three days later, the 17 August will always be the day I got myeloma. The day I got myeloma. A ridiculous notion really, because my vertebrae did not fracture on that date, and the paraprotein did not suddenly appear in my blood on the 17 August three years ago. It is the date I knew why these things were changing in my body. It is much like my birthday, except with far more adolescent longing. On this date, I can feel melancholy and I can feel slightly sorry for myself than usual. I can, if that way inclined, try and recall the best and the worst of my three years, the highs and lows of each of 1095 days, I have fought through. And it is a fight, people may be trying to soften the vocabulary, but for me, I see this as a fight, a really, really big one.
Of course, you can see and feel the date differently, which I occasionally do. For as sad as my diagnosis was and as much as I do not want to have myeloma, the 17 August is also the anniversary of me growing up. My Myeloma has forced me to do many things I have not wished to do and experience, but it also forced me to become an adult. Not the adult I once envisaged with a mortgage, children and a shed; the sort I am jealous of now. I am an adult who is forced to sponge of the State and her parents, but I became an adult nevertheless. I look at my contemporaries and sometimes I think to myself, ‘how would you have managed it?’ It’s a question without an answer, and it is a question I would not wish upon anybody ever having to find the answer to. I do not like myself for thinking it, but even when I think about that question in relation to me, I question how I have managed it all, and I am proud of myself. Even at the moment, when I seem to question daily my strength to continue with my allo treatment, I am proud of myself for coping. I think us myeloma sufferers deserve far more kudos for merely coping. I bet you any amount of money, because I do not have any money to make any sort of meaningful bet, that three years ago, I would have thrown anybody out of my cubicle if they dared to say that the 17 August would be a date that I would eventually be proud of.
Even though my pride only accounts for some of my feeling towards this day. My diagnosis was the making of me.
It was indeed a Big Day.
I could do what I have done in previous years and list all the treatment I have endured in such a short amount of time. I could go through the physical side effects I have experienced many times over and have been forced to become accustomed to. I could even talk about how long I statistically have left in this world, but I will not be doing any of that today. This year feels different to me. Maybe it is because I am no longer at UCH and things seem temporary at St Bart’s. Though, really My Myeloma feels more than just the facts and the figures. Since my last anniversary, I feel like so much has changed; I do not know if it is a tangible change or just a non-drug related feeling in my gut.
Perhaps, prior to this last year, when I embarked on a nine month treatment programme followed by two SCT, I believed nothing had really permanently changed. I mean, I knew things had changed, but there was a part of me that still believed that my life could at some point at an unknown time and date, just slot back until place. I know that will not happen now. My 13 months of near constant treatment shown me that.
Until this last year, I also believed that I had a well established Support Network in place. I believed that all the perceived letting down I had experienced in that first year, was the only letting down I was going to experience in My Myeloma journey. My relapse last June corrected that misunderstanding. I feel far more let down post relapse than during any other time during my illness. Make a leaflet about that Myeloma UK, some people, those without myeloma, just cannot handle the fact that myeloma is a cancer that is chronic. That it goes on forever.
It is a strange thing to say, when I feel so well supported and loved now, but I have had to grieve the fact that some people got bored of my cancer and thus they got bored of me. It felt like they had tasted and enjoyed the 11 months of freedom remission had given me, and thought that taking it all on again with another relapse was too difficult a task to take. My stock went down. There were some people who made promises of support and friendship, not always actual promises you understand, but their presence alone throughout the early days of my illness, made me naïve enough to believe there was something special and enduring in place. A promise of friendship. All I would say of this to anybody else in the same position as me, is, be warned of the glory seeker. When I am stuck in no man’s land, where there is no guaranteed end in sight, and the cancer keeps coming back along with my unpredictable fatigue, and those around me are moving on because they can, people and their promises can disappear. I have seen many of those promises, accompanied by those friendships end up on the proverbial scrap heap.
It’s made for a difficult year and one where I have had to learn to stand on my own two feet. Fortunately, there is a flip side to this and if my relapse had taught me anything, it was who I could trust to stand side by side with me, as my treatment and their lives continue to develop. It does not always have to be either or, even though I am still prone to bouts of paranoia on this subject. Let’s not kid ourselves, I’m only physically well rounded.
My relapse showed me that early on in my treatment, I made mistakes. I criticised my friends’ behaviour, in some cases I did so publicly and I regret that now. They were struggling like I was and they showed their struggle differently to how how presented mine. In the last few months, I have seen so much evidence of the support I have during my transplants, that I feel confident that even on my lowest days, I’ll have at least one person willing to pull me through the darkness. We just need to work on how I let people know.
As it currently all stands, I know that My Support Network is well founded and passionate. It is mine, it is invaluable and I know that it is built on trust, even though I do not get to see its members as much as I would like to and I am pretty certain that is a feeling that works both ways. Rather strangely, or should that be tellingly, My Support Network is made up of people I have known for years either because they are related to me (obviously) or because they have had the good fortune of being my friend long before I knew what myeloma was. It has taken a while and the occasional misunderstanding, but I know who will be there when I need them. Some people will need to be asked for help and others won’t, but that is just the way things have always been and thus, it is the way things should be. I just wish there was more I could personally do to make my friendships equal again. Homemade cards only get me so far.
Anyway, on the subject of my Support Network, I am making myself blush and as you are not all on anti sickness pills like me, I will put an end to the subject soon, I promise. I could have just said what I am about to say five paragraphs ago; My Support Network is irreplaceable. It may be irreplaceable, but crucially, my personal strength and journey through My Myeloma should not be defined and determined by it, and post relapse, when the droppings happened liked flies, I had to accept this the hard way and quickly.
My ability to cope with myeloma, is a much broader achievement than my Support Network. I personally, will always feel isolated by my illness and I have spent three years learning how to cope with this. I do not have all the answers, but I have more than I did last year, so who knows what I will be saying next year? And the year after that? And the year after that?
Last night, as I was trying to drift off to sleep, I began to worry that with three years of near-constant treatment, there was a possibility that soon, I might not have the strength to continue fighting should my current treatment fail. My current treatment, which I am nearly halfway though, is not exactly a walk in the park and trust me when I say, I have many a down day. I am fully aware that I will have more down days over the next x days. I will fail to get out of bed a few more times, find myself physically unrecognisable and cry over missing events with my friends. I worried so much about my occasional thoughts of giving up, that I envisaged quite a different blog to the one you are currently reading.
I haven’t only experienced treatment, relapse and drugs in my third year of myeloma. In the last year, somebody dear to me lost his fight against myeloma. He became dearer to me, selfishly, with my own diagnosis three years ago. He was somebody who I never saw being remotely negative about the bastard that is myeloma apart from rebranding Velcade, “Cillit Bang”. I fear negativity is my default position the minute the going gets remotely tough. His eldest daughter also gave me an invaluable crash course in myeloma and continues to offer me considerable patience. Her Dad did not have a sibling donor and thus could not have an Allo SCT, instead he had two auto SCTs and several other treatments such is the norm for current myeloma treatment on the NHS. He was given velcade and among many of the things, he suffered from steroid insomnia. He did not know it, but he was My Myeloma rock, and the only other person with myeloma I needed to know. My current treatment is the first treatment I have had that he did not have in some incarnation or another. I remind myself that I feel poorly because I am lucky enough to have a sibling donor, and last week when I couldn’t get out of bed, I thought about him and his family, (and not because I had just watched The Man With The Golden Gun remembering a holiday we had) and I got out of bed. That’s all I really want to say about that.
Three years after my diagnosis, in the middle of a transplant where I had to sign to say I was aware of all the risks that could happen during it, I am ever aware of my life and the chance of my death. I am also ever aware of the chance of my death being further away than the statistics that I will not talk about, and current literature would suggest.
It’s been three years of changing and developing treatments and a changing and developing me. I don’t know how to end my acknowledgement of my anniversary, so I am just going to say goodbye and thank you for reading my blogs. I promise they will continue.