Reality

It would appear that my reality has started to set in.

Everybody knows what I have now, they have all let me know that they know what I have and thus the cards, calls and gifts are rightly, slowing down, I have an established regime, I have started my counselling and now I have time. Time to think. Time to register. Time to let My Myeloma become my reality. FYI – I have even more time now because my treatment has now been put back by two weeks for two reasons, firstly to allow my body to get over the stupid common cold and, secondly to allow my body to get over next Monday’s radiotherapy.

So, I now have time for the first time since I was diagnosed, to think properly about My Myeloma, what it means to me and my life, and pretty much to acknowledge just how shitty it is. It is, quite simply, shit.

I have had bad days before and I have shared them, but I have been running so fast, trying to catch up that I have not really stopped. Stopped to think. Everyday I have been doing something, keeping busy. I have been so busy catching up with myeloma, catching up with my treatment, catching up on sleep and catching up with loved ones, that I do not think I have given myself the proper opportunity to dwell and to let my diagnosis sink in. By now, I understand what myeloma means, I understand what my treatment involves and I most definitely know that my loved ones love me right back. The sleep is another matter. I do not think, and this was quite apparent during and after yesterday’s first counselling session, that I have fully accepted My Myeloma and all that it entails. My Myeloma effects everything, big and small.

Let’s get a few things straight. This is not me being negative. I am not a negative person and I strongly believe that in order for me to tackle this and take it downtown, I need a positive outlook. I cannot think that things are going to fail and I feel guilty that for the last 6 days I have thought that they will. Regular readers may think I am schizophrenic. I feel like these thoughts are setting me up to fail. Sod Bad News Wednesdays, I cannot let these current seeds of doubt become My Self Fulfilling Prophecy. I have spent 50 days trying so hard to be positive for myself and others, that I have only allowed myself to graze the surface of what can go wrong and to acknowledge just how much my life has been irreversibly changed by My Myeloma. Prepare yourselves, if you are emotionally free, grab a hankie, because right now, I am going to be self indulgent and I am going to whine and I am going to say the things that scare me. I need to say these things in order for me to process, manage and accept My Myeloma.

πŸ˜„ 😁 😳 😭 πŸ˜ͺ ❀ πŸ’” πŸ‘ͺ πŸ™ πŸ’€

I do not want my current treatment to fail, but I have to acknowledge that this is a possibility. If this happens, I have to undergo another treatment and if this fails, another. If there is one thing my doctor’s have made clear in recent weeks, My Myeloma is widespread, so failure is a possibility. My current focus has been and still is, getting through PADIMAC successfully, but I need to know that this may not happen.

I plan, once my paraprotein level has reduced enough, to have the donor stem cell transplant, in spite of the mortality risks and in spite of it going against the principles of the trial. My Myeloma is mine and if the transplant is successful, it will give me the best possible prognosis for life. I do not want to die during this treatment. I do not want it for my friends and family and I most certainly do not want it for myself, but I have to acknowledge that this is a possibility.

I do not want my treatment to make me infertile. I want children. I have always wanted children, and words cannot describe what the thought of not being able to have them means to me, but once again, I have to acknowledge that this is a possibility. I have not researched it, but I do not imagine that a person with MM would be a strong candidate for adoption. I am slowly preparing myself for this and I have an appointment with a fertility doctor, which I am sure will be a real hoot, and if the news from that appointment (and realistically, future appointments once I am in the clear) is bad, then I have to be prepared. Fortunately, on this point at least, I do have a contingency plan courtesy of Big Sister and for that I will be overwhelmingly and eternally grateful.

I am 28 years old. I want to be able to do all the things other people my age, correction, age bracket, are doing. Everything is stalled. I will hate myself for writing this, but I want to fall in love and have that person love me back and you know, love me enough to actually take a leap and decide to be with me in spite of the disease (I fear, in the future I may use My Myeloma as a reason why my success in this area is limited, actually, that is pretty much a given). I have to acknowledge that the pool, sorry, I meant pond, of available singles enamoured by my wit, will be dramatically reduced to, lets say a puddle, because I now come with baggage. Actual Baggage. I am not talking the baggage of a bad breakup here; I come with a lifetime guarantee of cancer. I have also stated in the paragraph above that I want children and I hear that puts some people off in the early stages of a relationship, so…. I have to acknowledge that there is a possibility that I could become a barren spinster with a lifetime guarantee of cancer.

I want the Cancer Roadshow to stop and the very occasional pity parties to stop. I am strong and I really do not need pity. Support, yes. Well wishes, yes. Love, yes. Pity, no. Though I would be the first to say that I cannot force everyone I know to read this blog, so the roadshow, will have to remain for the time being. I also want to be able to distinguish between somebody being nice to me because they like and/or love me and not because they are doing it out of a sense of duty and/or pity.

I do not want to be in pain for the rest of my life. I want to be able to go to Alton Towers and enjoy Nemesis and I want to be able to pick up something heavy. I have no idea what my doctor meant when he said my pain was ‘chronic’, but I do not want my pain to be something I think about everyday for the rest of my life, when just three and a half months ago, I was told that my pain was a pulled or torn rotator cuff. How could that ‘rotator cuff’ now become a lifetime of chronic pain? I do however, have to acknowledge that this is a possibility. That said, I will tell you something for nothing, as soon as I am in the all clear, I will explore every possible medical option to improve said pain via treatment, so that I do not have to rely on painkillers to function. Every fucking option.

At the moment, I feel like My Myeloma, the cancer, is swallowing my identity. I, somewhat egotistically, am proud of my personality and I am proud of the relationships I have built during my 28 years. My Myeloma however, seems to want to be involved in every aspect of my life right now and I hope and will that this situation is only temporary. I have said previously that the illness does not define me and I know it doesn’t, but everything I am, everything that makes me me, seems to be tied up in this sorry mess. Cancer is slowly taking parts of me away that medicine cannot stop. The fact that I can cry at the click of a finger for example is something that never, ever would have happened pre diagnosis. Talking about and showing my feelings full stop is pretty novel for me. I know and I have said it before, but I will say it again, I have to accept that myeloma is now apart of me but it cannot define me. For as long as I am alive, I have to ensure that this is the case. I will not give on this fact.

I have to acknowledge that I could die. My Myeloma can kill me. In all likelihood, my death will be caused by the disease. Before that time comes, I want to be old. When I say old, I want to be a retired Granny collecting my Civil Service pension (hmmm), living in a house I own, a house I bought with my husband with photos on the wall of our life (said photos will include the members of my wonderful Support Network, obviously), with my cancer scrapbook collecting dust in the loft. I have to acknowledge that this might not happen. I am 28 years old and although I was told not to look at the stats because of my age, the average MM sufferer survives for 10 years after their diagnosis. I want to see the end of my twenties and all of my thirties, forties and fifties and I don’t want to spend too much of that time in a hospital. This unfortunately may not happen and I need to process this and live each day as it comes.

As for the small stuff… I want to be able to go to the supermarket by myself. I want to be able to walk a reasonable distance by myself and not be afraid that I am going to fall over. I want to celebrate all my friends’ birthdays in their venues of choice. I do not want all my skin to dry out. I do not want the hair on my hair to fall out when the steroids are making me have excessive hair in places I do not want it. I do not want Housemate to have to empty the bin every Tuesday night because I cannot nor do I want to interrupt his life my need to bring my social life into the flat daily. I want to be able to take cough medicine. I need to get my head around the fact that I can never sunbathe properly again or take ibuprofen or indeed, smoke. I want to be able to give somebody a bear hug and I do not want the common cold to become a gargantuan interruption in my life.

The icing then, on this freshly baked cake is that due to some snot and phlegm, I am now an extra fortnight from being in the all clear. The bloody common cold. I am two weeks further away from knowing whether PADIMAC is going to work for me. I am two weeks further away from knowing whether my transplant is successful. The two week delay in my treatment may sound like nothing to you, but that two weeks is a two week delay in me resuming my life and two weeks from starting the next chapter of My Myeloma and seeking the answers to some of my questions I have raised above. Balderdash!

I know that I will be positive again. Strangely, I think that this post is a part of that, it is an example of my positivity that I am able to share the inevitable lows of living with cancer. For now though, I am going to take this two weeks and let myself stop. Stop and think (oh and beat this bloody common cold).

I will use this two weeks to allow myself to process, manage and accept that my name is Emma Jane Jones and I have Multiple Myeloma, for life. I will then return to my counselling sessions, because I clearly have some, erm, issues.

EJB x

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4 thoughts on “Reality

  1. Teresa Chinn says:

    Words cannot describe how I feel after reading this all I can say is thank you for for having the strength and courage to share your story xxx

    • ejbones says:

      Thanks Teresa. I see this whole thing as therapeutic. Plus, as MM has taken me away from my daily life, I get to use this medium to talk about myself instead of in person! Thanks for reading.

  2. Kate Stokes says:

    Emma, you are amazing xx

  3. dear emma,

    yes! therapeutic! do you find that at times there is sooooo much swirling about in your head, and you just HAVE to write? and when you do, it’s such a meant-to-be sort of thing? because all that swirrly stuff becomes – well, unswirrly. there is clarity, relief, and such peacefulness afterwards, and it sometimes leaves one blinking in disbelief; wtf, you mean ALL THAT has be accumulating – all that emotion, all that reality that just poured itself onto the page?

    emma, i am thinking that your ability to write so beautifully and honestly, and at times, allow yourself the rawness of the words, as well as your capacity to feel grateful for whatever makes you happy, and the dreams for your life, your firm determination to not be defined by fucking, lousy cancer, admitting your fears and more importantly, asserting and BELIEVING that you WILL have a chance to have the life you wish for – whew! talk about run-on sentences! – puts you in a much better place. just keep writing, work it for all it’s worth, and know that it’s such a gift to all of us lucky enough to get to read it.

    love, xoxoxoxo,

    karen

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