The Bad Day

Yesterday was a bad day. It was probably The Bad Day. The thing with myeloma, is that they’ll be more Bad Days. I realised that properly yesterday.

I like to think that I am stoic and I deal with My Myeloma as positively as I can. The sad truth is, that on a day like yesterday, even the strongest of strong bad asses are going to fold. I folded. I guess, as the cliche goes, it’s the getting up again that matters. I didn’t get up yesterday. I have since I started this journey become a firm believer in letting it out. And boy, did I let it out yesterday. There is no use pretending that I didn’t. I did. My emotions yesterday were real and they played out something like this:

Upon hearing my dreaded news, I believe my self preservation mode kicked in and all I could think of was to not cry in front of the doctor or nurse. Sure, that made it quite difficult to process what I was being told and you know… concentrate. I didn’t ask why my mouth and nose were swabbed, I didn’t ask how bad my increase was. Is it actually just a step away from donating my body to medical science? I didn’t ask. I just had to get out of the room and I didn’t want anybody to ask me how I was. I wanted to go home.

That did not happen though. I had to pee into a pot and make an appointment for next week. I got the peeing out the way, but making the appointment was near impossible. I did not have the energy to overcompensate my tears with a joke. I just whispered to the receptionist as she dilly dallied over her computer. Rather nicely, my transplant nurse waited for me to do this to check that I was okay. I wasn’t. She got the lift down with me and again, all I could think of was ‘don’t cry’ and ‘don’t ask me any questions’. She did though and I think from that point on, I could not help but enter the longest crying session I can ever remember experiencing.

Of course, I could not go home straight away. Life is not that simple. I had to pick up some drugs from the pharmacy. I was told that it would be 30 minutes. It wasn’t. It took over an hour and that was an hour of me sitting on the ground floor by the Garden Lift crying, hoping that nobody I knew saw me. Again, that did not happen either. It would be inappropriate to rank my doctors by preference, they are all Medically Trained People after all, but my least favourite doctor walked by twice as I sat there blowing my nose on the lining of my coat with mascara running down my face (FYI, I strongly suspect given the time between sightings, he was having a crafty fag, Medically Trained People should know better). My favourite Macmillan lady also saw me and with her I didn’t try to hide it. I just let it out. More tears and more snot. Consequentially, my counsellor called me later in the day to arrange an appointment. That’s where your charity money goes folks.

If waiting wasn’t bad enough, I had to tell The Support Network. I have a vague recollection of saying to a Medically Trained Person, I do not know who of course, ‘what am I going to tell people?’. Apart from Mamma Jones and Big Sister, this was done via the group text message. I am a coward. The responses were heinous, for each text I received in reply, I cried some more. It’s not just about me. It would appear that people do care and they do love me. It was too much to take. Yoda was told not to come to the hospital, because I think at that point, if I had seen somebody from my actual life, I would have had no option but to roll around on the floor and/or to destroy the biscuit display in Costa whilst spitting expletives that rhyme with ducking hunts. I needed to be alone and I needed to process.

On getting home, via taxi, because the thought of waiting any longer in that building for my transport made me want to rip out my intestines, I sobbed. Actually, I howled. I walked down to my kitchen, opened my plate cupboard and thought that smashing its contents was an awesome idea. I then remembered that I hate cleaning and as Middlesborough tells me every time she comes to the flat, I do not have enough plates in the first place. So, I vetoed the smashing and instead, made my way to my bed and cried some more and reached for the tissues.

I tried to stop looking at my phone. I am probably still not answering enough of my calls because yesterday I did not know what to say and today, I want to forget about it. My favourite comment yesterday, which I received from several quarters was ‘it is fucking shit’. ‘Sorry’ worked to some extend, but I wanted venom. Only venom was going to stop the tears yesterday.

After a few hours more of crying, I moved on to the paranoia. Why was everybody being so nice to me? Why were there so many sympathetic faces? Why did they say ‘if’ I have my transplant? Why did the doctor think it was a good idea for a family member to come next week? The questions went on and on and on, and yesterday, the only answer I could come up with, was ‘because I am going to die’. And then I cried some more.

And then, I thought I better keep my evening plans because the alternative was to carry on crying alone on my bed and I did not have enough Kleenex. So, I went out and what do you know? I cried some more and had to wipe my nose on yet another coat (black cape if you are interested).

Getting to sleep yesterday however, was surprisingly easy. I was exhausted. The shock had taken most my energy away from me and then the tears took what was left.

Not everyday is a barrel of laughs in Myelomaville. I felt loved and alone all at the same time. I also just wanted the day to end.

As for today? I got out of bed.



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14 thoughts on “The Bad Day

  1. Pip says:

    Your bravery is astounding. I’ve got everything crossed for you!! Keep on getting out of bed 🙂 xxxx

  2. Jet Black says:

    You’re right, it is fucking shit. Shit you got myeloma. Shit you’re only 28. Shit it relapsed so quickly. That bit is really really shit.
    I know you didn’t want to but I’m glad you’ve been able to cry… and I admire your courage in getting out of bed.
    It seems to me the treatment isn’t the really tough bit, it’s what goes on in our heads. I think crying and cursing gives the strength to carry on being stoic and to deal with the next myeloma challenge. x

    • ejbones says:

      Jet, sorry I have not replied to your other comments. It’s all about the lipstick for me. It gets me through it all. I am just ping to keep letting them pump me full of drugs until something works. I hope you enjoyed your holiday.

      • Jet Black says:

        Which lipstick do you wear? Do you have different shades for different moods, or are you a one lippy kinda gal?

        I totally get how you’re feeling. When they told me I’d relapsed, I thought “this is it, not long now”. But that was over a year ago and dammit, I’m still bloody well here. The first attempt doesn’t always work, but they have more treatment options available. It’s just shit when the first rug gets pulled away so quickly. It totally dented my confidence in living. It’s gradually coming back now. Did you see my List for Living?

      • ejbones says:

        I wear a variety, not based on mood but outfit. General rule of thumb is a Mac Matte lipstick.

        My doctor’s are not quite calling it a relapse although my treatment is for relapse. It’s all a bit strange. If it comes to it, I’ll go for the full Allo if needs be. I am young enough and I figure I cannot always be unlucky.

      • Jet Black says:

        I know you don’t necessarily want advice and I’m sure all the options have been explained fully. But I’d say if an auto is likely to be successful, then do that first and save the allo for later. You just don’t know how the GvHD will affect you. Even mild, it’s a pain in the bum… oops, I mean gum! 😬 x

  3. Lex says:

    When I read your post I knew how you felt, I could have killed everyone in London for you – and you didn’t cry alone E.J, you didn’t hurt alone, but you needed to be left alone; you were down for the count. Now you’re up again, mouth-piece back in, time to throw some punches, this one isn’t over yet, not by a longshot. Hold on.

  4. Dianna Jenkins says:

    When I read your blog my heart went out to you. My husband has MM and I am his caregiver. I have watched him go through the exact same emotions over the last year. I wish I could have been with you to put my arm around you, hold the box of tissue, and hand you one as needed.
    Hang in there and I pray you have a better day tomorrow.

  5. NotDownOrOut says:

    I always feel conflicted when I “like” a posting like this because it conveys so much raw emotion and pain, but I appreciate your honesty. I have never had a good cry in more than a year after learning about uterine cancer. I keep thinking it will come, but so far not many tears. Some anger, yes. Let yourself have whatever feelings bubble up. You sound like a brave and wonderful person. I wish you wellness.

  6. Terri J says:

    I’m crying & screaming with you. Get out of bed each day & meet it head on. You are strong & can do it but don’t do it alone it sounds like you have a lot of people who love you. I am Momma Jones also & when my daughter was diagnosed with Myeloma last year I screamed & ranted. Your mother hurts just as much as you do. I’m sure she will do anything to take your pain just like I will for my daughter. You are a grown up but let her be your mom. It will help both of you.

  7. Deborah Bone says:

    Life is shit in Myelomaville. I try to look on the bright side but sometimes it’s just too dark to see. I am sorry I wish I could change things. I have just written my blog and had to state the bleedin’ obvious to myself having cancer means you are ill! Crying is good although I want to laugh and I think I may become hysterical. I hope you get some strength back today to fight these bastards. Come on clever medically trained people pull something out of the hat we need a cure and quick!
    Thinking of You xxx

  8. Good for you, Emma. Keep on getting out of bed. Personally, I have cried in front of all sorts of people in the last year. Crying on the top deck of the bus is a personal favourite. When we are dealing with such terrible shit, I think we’re entitled to let it show sometimes. It’s all very well looking heroic, but it isn’t a fair reflection of what it feels like.

    • ejbones says:

      I agree. I just let the tears out when I need to. It’s too toxic otherwise. Fortunately, there have not been many tears this week. I too am a fan of the solitary tear on the bus, now that I am able to get on the bus again!

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