Dashed Hopes

Since the 17 August, I have been counting down the imaginary days to my next volume, chapter, to a time when I can resume my normal, or realistically start my new normal. Along the way there have been setbacks, points in which I could see no end to the twilight I am stuck in. Each time, I have been able to pick myself up and continue with my treatment. I have got this far by setting myself targets and goals; things that I can enjoy after PADIMAC and then after my transplant.

In the last month, my mental planning has been working overtime. In the middle of May I have tickets to see The Book of Mormon, in June I am going to be a bridesmaid, I want to walk up to the top of Monument, I am going to go on holiday to Cornwall and I am going to go back to work full time. All these things I have been holding onto so tightly, they have been my reason to get out of bed everyday and with my transplant looming they were within my grasp. I could almost touch it and the happiness this created was indescribable. They were mine for the taking when the myeloma was asleep.

Unfortunately, nobody told My Myeloma this…

Today, I discovered that I will not be having my transplant on the 27 March. I do not know when I am going to have my transplant or indeed if I am going to have a transplant. I have been so focused on resuming my life that I had forgotten about my paraprotein. I have not felt this well since before my diagnosis and that also made me forget about my paraprotein level. I do not think that after today, I will be forgetting about my paraprotein level anytime soon. In January it had plateaued, but last week, it apparently had a windfall and jumped back up to 26. This means no transplant. This means there is no end in sight. This means I am back to where I was in October. I thought I had been progressing, but in reality I have just been treading water.

I do not know what to do. It feels like my diagnosis all over again. I am to start a whole new course of treatment, but that cannot start until at least next week because my neutrophil count is low and I have a suspected infection. My new treatment is going to last at least four months and then… Who knows? There is no end. It just goes on and on and on. I am constantly trying to come to terms with My Myeloma but every time I reconcile myself to my reality, it comes along and fucks things up some more. It’s never going to end.

I don’t deserve this. My loved ones don’t deserve this. I have been poked and prodded and had endless amounts of blood removed from my body. Hell, today, they took out a bit of my bone. I have taken drugs that have made me ill and made me lose my hair. I have done everything that I was supposed to have done and still it is not working.

There really are no words.

I have no idea how I am going to get out of bed tomorrow… but the thing is, I know I will and for the time being, that is all I can do. Get out of bed and don’t give in. I am not ready to give in. I can’t.

EJB x

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18 thoughts on “Dashed Hopes

  1. Sarah says:

    Oh Emma, you really really don’t deserve this. Like you have said, there are no words, but just want you to know you are always in my thoughts. You have done amazingly these past 6 months and you have proved that you can do this. Be positive, i know its hard at the moment to look past this horrible news but you can and will fight this. Thinking of you, rach said she’ll come see you soon. Xxxxx

    • ejbones says:

      Thanks Sarah. I think I have just about come to terms with it all now. I just have to get on with it all. No doubt I will see you soon. I feel for Rachael having to find me a dress now I am not going on the transplant diet. I am not going to give in to those steroid cravings. No way.

  2. Hugest hugs Hun, your positive attitude will keep you going. How utterly ignorant of your paraprotein levels to interfere with all your hard effort and plans. Time to kick it into touch xxx

    • ejbones says:

      Thanks Gemma. I try. I sometimes do not know where Kirsty finds her strength in all of this. She is quite simply the best.

      I hope all is well with you. X

  3. Rekha says:

    I’m so glad you’re not giving up. Read your blog as often as I can but never know what to comment. x

    • ejbones says:

      Thanks Rekha. I am always baffled by the people who read the blog. I hope you are keeping well and thanks for the comment. Sometimes, even if people do not know what to say, it is nice to know that people are thinking about me. I am needy that way. Emma x

  4. Terri J says:

    It’s a roller coaster ride. Our daughter was suppose to have her transplant last june but the Velcade infusions she did for 4 months gave her an irregular heartbeat so she had to wait until they got medications for that straightened out. She did have her transplant in August & is now getting her life back to the “new Normal”. You will succeed, just maybe not as quickly as you wanted. Keep blogging I enjoy reading them especially since you are close to my daughters age(32).

  5. Lorna says:

    I don’t have anything useful to say so you’ll have to forgive me. Fuck life is unfair. I’m nearly 50 it should be me not you. I don’t care what other people say I hate myeloma.

    I wish I had a magic wand I truly do. X x x

    • ejbones says:

      Thanks Lorna. I do not think there was anything else to say last week. I just have to carry on now, occasionally bake a cake, keeping putting my lippy on, and hope for the best. That is all I can do.

  6. Jet Black says:

    Oh no! That’s so awful. I completely relate to what you say about it feeling like getting the diagnosis all over again. I felt just like that when I received the news that I had relapsed last year. Totally devastating!
    Here’s hoping the next treatment is successful… and lasts. My thoughts are with you. x

  7. I’m so sorry. Miserable news. I hope things look up for you soon. Life stinks sometimes. Still, tomorrow is another day, so try to get up and look forward to better times. Wishing you all the best.

  8. dear emma,

    shit. damn. fuck. piss. other than i am so sorry, there are no other words…

  9. Sharpy Sharpster says:

    Lovely Emma, I’m so sorry to hear this shitty news. Time to take a deep breath, regroup and carry on. In the words of Mr Marley, get up, stand up, don’t give up the fight. XxX

  10. Jay says:

    Emma I don’t know you. And I doubt you’ll ever know me. So forgive my presumptuousness by saying you sharing you story makes your My Myeloma feel, in part, like Our Myeloma. I guess we all have our reasons for reading but I don’t think any of us are ready to give in. We may be in cyber space but we’re all rooting for you.

    • ejbones says:

      Thanks Jay. Your comment made me feel much better last week. I think sometimes, it is really nice to know that there are people rooting for me, whether they are my loved ones or those of you out there in cyberspace. It is very much appreciated. Emma

  11. Hi Emma. We dont know each other, but I have myeloma too and having seen your blog I just wanted to say that however shitty this disease gets, please know you are not alone. I’ll be hoping your next treatment regime proves to be just the thing your particular myeloma can’t resist. Tomorrow is always another day.

  12. Kirsten says:

    I think it is good that you are having more treatment to get those PPs down, you will have a better chance for complete remission the lower the value is. Velcade did exactly the same to me, PPs down from 57 to 21 in 5 cycles, now will have another treatment for maybe two months before SCT. All the best

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