Time After Time

I am well and truly in my new treatment cycle and what I am discovering, much to my steroid dismay, is that what I used to consider to be a week, is no longer a week. It is not even close.

My new week is shorter than your work and that is a fact.

During My Limbo, all I did was complain about how bored I was and how tired I was of doing nothing… If I had known what was coming with VDT/VTD, I probably would not have complained so much. Actually, I would have still complained, who am I kidding? I complain about every part of this because so little of it is within my control. Right now, after a weekend of being bed bound, it is clear that my time, or the majority of my time and how it is spent, is no longer within my control. This has probably been the case since the 17 August, but right now, I cannot see the wood through the trees and to put it bluntly, I do not know how I am going to manage it. I am flustered and I am swear word angry. I want to scream and shout and let it all out about the injustice of this. I should be telling you about how my transplant is going, not how shit my new treatment is and how I cannot possibly fathom how this is ever going to end.

I feel like I have spent the last week playing catch up… My Limbo was possibly the worst training for my new treatment.

I have gone from My Myeloma determining 20% of my waking day, to it determining at least 80% of it. And I have hit the ground running. There was no period of adjustment. One day I was not undergoing treatment and the next day I was on a 16 week treatment with no break, shoving thalidomide down my gob daily. PADIMAC was horrible because I had to be in the clinic so much, but it seems like nothing compared to this. At least it came with a week off every three weeks. I learned to live for that week, to get through the dark times by filling my faithful good cylinder. VDT/VTD does not offer me that.

I am not one to blow my own trumpet, but I can see how somebody that does not have my smile behind their eyes would struggle with this treatment. I do not think the Medically Trained People have considered the effects VDT/VTD has on one’s mental health. Perhaps they need a chat with another department. Do Medically Trained People chat with Medically Trained People Who Specialise In Comfort? Everyday, all VDT/VTD offers you is a reminder of your diagnosis, not just a reminder, I am in a relationship with my diagnosis. I have to be home by a certain time every night to take my medication. I cannot take it when I am out because it knocks me out. I cannot take it too late, because it will effect my productivity the next day. In the mornings, on a good morning, I cannot form sentences properly, my head hurts and I probably would not be able to drive a car, if hypothetically, I was not permanently high on morphine.

I am trying to find a positive in this. I am trying because I need to, I have 13 weeks left of this after all. I really am trying… At the moment, and I have no reason to think that this is not going to get worse, I can automatically rule out two days a week with drug fatigue. Not the sort of fatigue somebody could say was okay because it is just tiredness. I am talking bed bound, lying in my own filth, incapable of following the plot of D2: The Mighty Ducks, sort of fatigue. That gives me a five day week. Oh, and these bed bound days fall over the weekend, so quality time with The Network becomes more difficult. On Fridays, I go into the clinic for my Velcade and I have to get up early to take my ‘roids, which by the way, make my perception of all of this so much rosier. That leaves me four and a half days. I have already noted my daily drug commitment… Some people may perceive my morning lie ins idle, they used to be, but these days, I feel like when I give in to it, they are a necessity. Sometimes, I just lie and my brain just hums. It hums because that all the drugs allows.

So, if we take all of that into account, I probably have three and a half days of goodness, spread over the seven.

If I have said if once, I will say it a thousand times… I do not feel like my time is my own. I really don’t. Middlesborough very wisely told me today not to work myself up, and I was of course. I was crying and dwelling on a wasted day, something I have to dwell on because the good days are now so precious. How does one manage the guilt of a wasted day? Can cancer patients actually waste a day? We have cancer for God’s sake. People cut us slack. My worst critic is me. Shoulda, could, woulda. [That might friends, is called ‘insight’]

I will however, acknowledge something good about my reduced working week, although it loathes me to say it, like complementing something on ITV… The last two and a half weeks have flown by. Literally flown by. I may feel like I have had no time to myself, but at least the time has gone quickly. Perhaps, if the rest of the time goes this quickly, I’ll be fine. It’ll be the final stretch in no time at all.

I have been trying to establish how I can exist within this. I have spent most of the last week thinking about it, with the exception of some self indulgent romanticisms, but really, this is what is more important. My options are simple, shut myself off like I did during my weeks on PADIMAC or try and build some sort of routine which encompasses something that interests me and in turn, makes me interesting. I am choosing the routine. My Limbo has made it impossible for me to do anything else. I do not know how long this is going on for, or dare I say it, if it is ever going to end, so I need to stay sane. I always had something to look forward to before and now I don’t. I cannot let my treatment take over. Sod it, staying sane has to be part of my treatment. I keep going back to my early days of saying that My Myeloma cannot define me, and although it keeps trying, I cannot let it. If I let it, I would start randomly punching people in the face and I am non violent. Not lyrically of course, I can slap an insult and give an awesome evil.

In my new seven day week, I will see my friends, I will do some work and I will watch a film. Hell, I have even joined a book club, which is ambitious seeing as I have been unable to read a book since being diagnosed despite being given several books including a lot of erotica and buying myself more. I will struggle with this schedule, but I know me and I would struggle with the alternative more. I need to do it. Maybe with some minor alterations, like a curfew and more fibre. Not everything can stay the same… My cylinder will now be filled weekly and depleted weekly. It’s not ideal, but hey, what is? I have myeloma.

Anyway, perhaps this is only a temporary measure and it won’t go on forever.

EJB x

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2 thoughts on “Time After Time

  1. Deborah says:

    Oh I can so relate to your feelings of being out of control. I too feel like Myeloma rules my life and I have to wait until the doctors tell me to move forward one more square on the chess board. Currently I am waiting, not so patiently, for the side effects of the Velcade to subside. The pain in my arms, feet and legs is reaching unmanageable proportions but I really want to get what I hope will be my last cycle of chemo out of the way. I can then get on with harvesting then hopefully regain some of my life back. At the moment that day seems a long way off and I am not sure if I can remember who I am or was? I don’t suppose I will ever go back to who I was prior to diagnosis because now and forever more it would seem I am Deborah with Myeloma that is either fully present or in the background just waiting to raise its bloody head again. I think the doctors think I am a bit loopy but coming from a mental health back ground as a professional it figures. Most of us have a screw loose somewhere as we kid ourselves that we come into the field to help others when really we are secretly providing therapeutic support to each other. Any way I have been using a rat analogy hoping that any rats left in my bones are impotent or have at least gone of having any ‘how’s your father’ I suppose I chose this analogy as there seems to be no knowing when the buggers will start reproducing and before you know it you could be back at square one. Do not pass go, go directly to jail or in our case hospital. I wish it all didn’t seem so much of a lottery!

    Wow sorry that seems a long comment to make and probably has no relation to your post. I blame the drugs or hysteria. At least it has distracted me momentarily from the pain so thank you for hat.

    Take Care Emma

    Deb x

  2. Pip says:

    In the grand scheme of things Em, 13 weeks is no amount of time. Take it easy and let these drugs do what they have to do. I know that’s easy for me to say because I don’t have to take them and I don’t have to suffer the unbearable side effects, but I’ll be back in 13 weeks and I am counting down the days as well. Your Myeloma will never define you because there are a gazillion other adjectives we’d all choose over “Myeloma” but your body needs to rest to be in the best health to fight and repair itself. Please try to relax and trust in the MTP. As for your friends and the 7 day weeks… we’ll be ready and waiting in 13 weeks for a social-life top up. I sure as hell will need one as I’ve been on a self-imposed social-life-strike since August 2012. For now, rest, sleep and let the medicine fight with you not against you. XXOOXX Pip

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