Get ready throw paper in my general direction, for today is my first anniversary. Correction, our anniversary. Who would have thought that one year down, and my arranged marriage to myeloma is still going strong? We haven’t even needed to take a break yet. We have been entwined for 364 days. Myeloma and me.
One year ago, on that fateful Friday afternoon when I was told that they were almost certainly had myeloma, I had no way of envisaging what that would look like and what it would do to me. I don’t think anybody did, even the Medically Trained People.
Since the 17 August 2012, so much has happened, and though at times, I feel like I have absolutely no progress whatsoever. It is gone quickly and at a snail’s pace. Sure, I had a partial response (that’s officially terminology you know), but then I didn’t. I then had another course of treatment for which I had a limited response (that is not officially terminology), and then I had a transplant. What comes after that is for Year Two. I said it at my halfway mark, but it does not hurt to review what has happened to me since I was diagnosed.
Medically, it has been a total treat for me. I now have a high pain threshold, I am excited by my faeces and developed a fear of Oramorph. These things have happened because I have had two different courses of treatment, which in total involved 40 Velcade injections, 24 doses of Doxorubicin, 224 thalidomide tablets and 800 horrible Dexamethasone tablets. Lord knows how many maintenance drugs I have taken, I wager that in the tens of thousands. I have had radiotherapy on my right hip, which is involved me getting a tattoo on my lady garden. I had my heavenly Kyphoplasty. In February, I got to have a large bag of cyclophosphamide leading to a rather pleasant bladder infection and a trip to A&E. I have no idea how much bone juice (Zometa) I have had, but I know that has done some good. They have drilled into me three times, with three bone marrow biopsies. My stem cells were harvested and then after a lengthy and devastating delay, they were put back into me. If I had been scared of needles one year ago, it would have been, well, pretty buggered. In addition to the medicines and procedures, I have slowly watched and be told that my veins have become shyer and shyer, I have managed hair loss including losing all of it twice, I cracked a few ribs and I taught myself how to walk again without grimacing and dealt with the high probability that I will not be able to have children.
It’s not what I imagined for my life.
I discovered early on that myeloma is not just about the medicine. It is about me. As I have struggled with my drugs, and the lows getting lower, I have had to deal with myself and I never know if I have managed it properly. I have no idea how I have taken it all in.
Fatigue, not working, becoming disabled, accepting that my lifespan has reduced, whilst trying to block out the noise from strangers telling me that I will be dead in ten years (nine years now) for I do not plan to be. It has and continues to be an emotional roller coaster, and it would be that anyway, before we factor in the mood altering drugs. I have cried a great deal, argued with friends leading to more tears, I made certain people key players in my Support Network regardless of whether they asked for the role or not, consequentially, I have felt and continue to feel a warm fuzzy feelings of love when i look at their faces, but flip the coin and I have also felt disappointment when people have not lived up to the expectations I put upon them. I fancied myself in love and had to deal with the heartache of realising I am Glenn Close with cancer. I have been angry with everybody for not understanding how I feel and jealous at them for not having to understand. I have experienced such feelings of isolation and loneliness, on the island that is my bed that I have sobbed uncontrollably for hours. In a year, I have given up so much and yet, I have I still wake up everyday.
Some time ago, well, within the last year, somebody said to me that he knew I would be fine (he was talking about my mental state, for he was not a Medically Trained Person, a first aided maybe). He said this because unlike other patients he saw, he said that when I answered questions about My Myeloma, he saw a laughter behind my eyes. I do not particularly buy into that sort of greetings card language, but I know what he meant and I felt it. I felt that my personality was still there and I felt like my glass was half full, all in spite of the wretched disease. I do not know if I feel that now, not everyday. Over the year, I have felt My Myeloma slowly suck out some of my positivity. It hasn’t gone completely. I hope it will not go completely, and I am clinging on to it for dear life. It just feels like it has depleted. I am not looking at myeloma with rose tinted glasses anymore. Big Sister says I am morbid, but I see it as realistic.
I have had few days where myeloma has not featured, and had many days where it rules. I still do not want my myeloma to define me, but I know now that it has to form part of me and my personality has changed. That is what the year has shown me. My Myeloma is omnipresent. I have dealt with it by living around it and getting on as best I can, but it is there. I know that this is all I can do.
So, one year down. The only thing for me is to continue to get out of bed everyday, and hope that I can remain strong enough not to let My Myeloma to consume me. That would just not do at all.
As for my Support Network… Thanks. Go easy on me yeah?