My Little Secret

As I emerge from yet another broken night’s sleep, I think it is high time I revealed a little secret in the hope that I can have a full night’s sleep tonight…

Dum. Dum. Dum.

In no way, whatsoever, am I coping with my transplant plans. You can exhale now. I do not feel ‘okay’, which if you did not know is my default, do not alarm people adjective for my health and my feelings. I find anything below the Okay Line, all rather embarrassing and not very English. I do not think I can hold my stiff upper lip anymore, and in admitting that, I suspect I am letting some people down.

I might me as big as one, but I am currently, not as strong as an ox.

If you are fortunate enough to be the handful of people I have felt well enough to talk to over the last week, I may have mentioned the subject and smiled. My voice may have even broken as I succeeded to hold back the weight of conflicting emotion. You may have left the conversation thinking that some of my fears had been listened to and that as a consequence I felt a better. I may have felt a little better, but then we have only really scraped surface. I do not know how to present the truth to people, to my Network.

The truth is, at this moment in time, as I am due to spend the next x weeks preparing for y months of illness and the unknown, all I can think is ‘can I do this?’ Then, when I am done considering that and everything than encompasses, I ask myself ‘is it going to be worth it?’ If I have allowed the brain to truly spiral into self pity, the latter question is accompanied by the sub question, ‘what are you even going to be left with?’

Reading my questions, I would like to think that your answers would be ‘yes, yes and a lot’. I keep telling myself that these should be my answers. There is something else in my head however, on repeat, with a persistent beat, saying ‘this is all too much, Emma‘. Too, too much.

On a practical level, I can discuss the x and y. By that, I can talk to somebody about how I have purchased new pyjamas, when I am going to shave my head, my concerns about where my PICC line is going to be in relation to the toilet door in my hospital rooms and whether it is possible to magically speed up my iPad so I can have meaningful entertainment in the hospitals. That’s the limit though, because everything else is a black hole of uncertainties of terrifying gargantuan proportions.*

In a much needed counselling session last week, in answer to my first question, I almost satisfied myself with the answer, ‘I’m just going to have to pull something really big out of my arse’. Even in the most emotional of circumstances, I still manage to find a way with words. My reasoning was that I have managed to hold myself together for over two years of near constant treatment, by flying, very slowly, by the seat of my pants.

My ability to create magic from my bottom, I believe will be greatly aided if I can use my x weeks productively, to see my Support Network, do things that I will not be able to enjoy for the rest of 2015 and complete my annual Oscar’s Challenge.

There is a problem with this plan in addition to my financial constraints, and it is a problem that is adding to my current woes. The problem is called fatigue. After 28 weeks of ongoing treatment, my body is coping less well with the thing they call energy. Not only that, but my new treatment regime, which involves the return of Cilit Bang and coordinated weekly doses of steroids, means that I have even less energy to do the things I would like to do. I have become most flaky in my social planning, for, I am finding there is just a lot of things I cannot do. On Saturday for example, I was out of my flat for a total of 5 hours, which included lunch, the cinema and a trip around Dalston. At the end of that, the only place I was going was to my bed to feel sorry for myself.

My head does not need the additional hurdle of fatigue at this stage. Last night, as I sat on my bed for 20 minutes working up the energy to put on my pyjamas, brush my teeth and give myself my G-CSF injection, I thought that the year of fatigue had already started. I am already struggling and it will go down before it goes up. It is an extremely scary thought.

Scarier still is what is to come when I head into my transplants. As I am one to blow my own trumpet, last week I summed it up well when I said that the best case scenario is that I am incredibly ill for a year. I might have even put that in my last blog, I cannot remember, in which case I said it a fortnight ago. I am going to stop, lie and watch whilst everybody around me continues to live. I obviously want them all to live, but that does make me feel behind. Immature. I try not to think about how much of my life has been put on pause with my treatment, but I would be naive to not realise how magnified I am going to find this reality when I am bed bound for such a long period of time.

Fingers crossed I will emerge well from my procedures, but that will come at a cost. I will have no money, I probably will not have a job and I will still be single and not so ready to mingle. I know myself well enough to realise at some (many) point(s) over the year I’ll be jealous and angry that others will be experiencing what I wanted for myself. I do not know how I will deal with this and I that is a concern. I am scared of driving people away. Mamma Jones recently described me during my first transplant as a ‘brat’. That was a revelation because I thought I was an angel.

When I ponder whether it’ll all be worth it in the end, my fear is that My Myeloma would have left me a shell of a human being with little relation to who I was up to 17 August 2012. I do not know what I will have to offer. This is a shocker, but myeloma has most certainly dented my self esteem. Even now, I am haunted by the words a friend said to me post my first transplant in October 2013. ‘Everybody is bored of your myeloma. You need to understand they need a break from it and thus you’.

Imagine that, huh? I know for a fact I am not going to be an easy person as things get going (seeing quote from Mamma Jones), and I fear that those kind words will become truer and truer as the year progresses. How far with loyalty get me? I have already seen some of this specific concern reflected in my relapse. I cannot do many a thing these days and thus less people feature in my life as a consequence of that. When I am high as a kite on morphine or after spending a third day without speaking to anybody but my mum, imagine how those thoughts will play. Actually, you do not have to imagine, I have imagined it for you and I am trying my hardest to find a way for me to not let it happen.

Of course, I have my fears about the worst case scenario too. I am still superstitious, trying to be brave and limit what can be perceived as complaint, so you’ll just have to read between the lines on what I do not want to happen.

I was surprised earlier in the week that somebody else was surprised when I told them that I have recently become reacquainted with the uncontrollable tears. They asked me why I was upset… I really hope the cat is out of the bag now.

And quiver.

Now, if people can make me feel loved without making me feel awkward or like you are taking pity on me, it would be much appreciated. Don’t worry, I can talk about things that are not about myeloma, in case you were on the cusp of getting bored. I think.

EJB x

* In case you were wondering, I am working on increasing my limits. I’m searching for some metaphorical tools. Do you know where I can find them?

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10 thoughts on “My Little Secret

  1. Tj13 says:

    Emma, my daughter is going through the same things as you right now since she relapsed. People have disappeared, she has sat many a day on the couch watching tv & many days so fatigued by treatment that she can’t get out of bed. This disease not only effects body but soul, especially for younger people. I hope you told that person who is bored with your myeloma that they could go to hell. Like you really want this all to be happening. The only thing you can do is meet each challenge head on. You have been through so much & you can get through a lot more.

  2. Rowen says:

    Try and keep your chin up, anyone going through this stuff would feel like this – people going through nothing feel it sometimes. We all know how loved you are!

  3. Kirsty says:

    Emma, I love reading your blog. I have myeloma too, and the things you are writing about are so close to home. It is difficult for people who do not have this disease to understand that the first and last thing we think about is myeloma. I cannot really talk about my illness and symptoms and feelings to anyone as my family tries to live life like nothing is wrong, but I love reading about other people’s stories and participate in myeloma discussion groups. Maybe you can find a myeloma support group near you? Best of luck with the future treatments.

  4. Pam Lewis says:

    Emma, I appreciate your blog, and more importantly your honesty. I began reading your blog because my sister had myeloma. Your honesty in this post will help many people and it takes an amazingly strong and brave person to be open in this situation. Wishing you peace of mind and strength for your days ahead. Sending you love and gratitude from NYC.

  5. Emma, I have myeloma also: today is the 8th anniversary of my (auto) stem cell transplant. Do not pay any attention to that “friend” who told you that they were bored with you talking about myeloma! People who haven’t been through it can’t possibly understand how hard this is, but that’s no excuse for being as unfeeling as that. Also, do not put too much pressure on yourself to stay positive and brave: it’s good if you can, but nobody manages it all the time! You’ve got enough to cope with without heaping more expectations on yourself. Good luck with the transplants!

    • ejbones says:

      Thanks Trevor. My counsellor is constantly telling me that I cannot be positive all the time and I am much better at letting it in now than I was when it all started. It takes some conditioning.

  6. alyssa says:

    Hi from Canada. I check in on your blog every so often and many things you write about I can really relate to! I have myeloma since 2010. I did treatment and then auto transplant and did well for several years but now I am relapsing and have a second transplant more treatment sometime in my future! I think it is harder the second time around going into transplant, the first time around I had no clue what to expect, but second time around I know exactly what to expect. ugh. I am a bit older 37, too young for MM!

    • ejbones says:

      Hi Alyssa, sorry to hear you are relapsing. MM can really be the pits. My transplant plans some to be rolling forward now. I still cannot decide of knowing what to expect makes it any easy, or makes the planning harder because all you can think about is the poo and vomit. At least that is what I think. My current brain mode is to try not to think about it at all. It’s taking much training.

  7. Dear Emma, my Son in Law has had MM since April 2007. He went through lots of chemotherapy’s and two autos – both failed, he nearly died – and then an allo three years ago. In the last six months he has been able to stop all Rev-Dex-Val and is getting off his pain meds (realizing he was becoming an addict about pain relief – but who wouldn’t?) and using marijuana instead, which helps with the brain being able to function better.

    The point of my telling you this is that I believe totally that when autos don’t work that allos can and eventually you can find a measure of a quality of life worth living.

    When your “chemo-brain” train is rumbling down the track, it is hard to think/believe/hope there could be a day when the window cleaner comes and you can see both clearly and brightly again, but it does happen.

    And, worth noting, there are some folks who have gone through their allos with even better success than the MT team could possibly imagine, getting to remission and better health quite rapidly.

    I guess the whole point of my writing this is to encourage you to visualize a better outcome rather than the worst. And that’s hard with a foggy brain, I know, as I’ve watched my SIL deal with that for a long time. But I’m part of your cheering section, and will continue to hope/believe and INTEND you are going to have a good outcome, and that your stay at St. Bart’s will be more positive than you anticipated.

    Finally, you are not, and never have been, a boring individual to me. I know writing can be a struggle even at the best of times (being one myself) but you soldier on through and deliver some amazingly cogent and witty items. I’m sure your counselor has encouraged you to be kinder to yourself… I’m with her! But I’m also on your team, too, and want only the best for you… certainly some better and kinder friends would be a good start.

    Thanks for taking the time to share your journey… waving and sending hugs from across the pond!

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