Share and Care

The land post autograft transplant, when one went into it with a paraprotein level of 20, is a strange, uncomfortable and rather traumatic one. I doubt that unless you have gone through it yourself, you are never going to really understand what it is like. I know, beyond any shadow of a doubt, that unless you are me, which is scientifically impossible, you would truly know what this period is like for me.

I spent eleven months working towards my transplant. Living within each cycle of treatment and managing my new treatment after the Bad Day, because I was working towards my transplant. The transplant was the goal, and prior to it, I had to get through my treatments, week by week. Now, in the post transplant haze, I am left waiting for something and I am not sure yet, what that something is. I have until November to wait. In November I will find out whether my next step is to do nothing, go back on to VDT/VTD or have another transplant involving a donor stem cell. I do not know what will influence which.

Right now, I do not have an outlook post November. I do not know what my life is going to look like post November. I still cannot plan a bloody holiday. Working towards my transplant, I expected normality after it, but reality says that this might not be the case. I knew it would not be a magic plaster, but it has not stopped me from being disappointed with the reality. I have known this for a while, but right now, it is finally sinking in that this still might not be over, this volume is going to be a tomb and there is a chance that this will go on and on and on, until I stop. When anybody tells me something different, like all will be well in a year, I want to scream at them and say that we don’t know that yet and let’s face it, I want them to shut up. I don’t do that of course, I put on a brave face and carry on until I am alone.

This period that I am in, feels different to anything I have felt before. I am acutely aware of everything that is bad about myeloma, not that there is anything good about it mind. I want to say so many things about how I feel, about my fears, but within My Network, with the exception of my family, I have not said anything because all the way through this marvellous journey, I have been strong and I have been stoic. I may have had the occasional blip, but, mostly, I have carried on with what I had to do at the time and I have never broken down. I have been told by the people employed by a charity to support people like me, that it is usual at this time, that people begin to struggle with the status quo and fret about the future. I am doing all of that, but it is isolating because nobody understands it. I am expected to be stronger. I am expected to be rational. Somebody said to me the other day that I am a victim of my own positivity, perhaps that is paying to much credit to me, but at times I do feel like that. My behaviour up until now, I suspect, makes it difficult for people to comprehend the struggle I am in. Not everybody wants to hear it. I had counselling the other day, and in these things I tend to have the occasional epiphany because I am not in conversation with myself, and I said that I am frequently being asked how I am, but I think few people actually want to hear how I am. They want me to be better and well. It’s too difficult to hear anything else and anything else goes so strongly against my character. What I feel hardly fits into a text message.

How much should I share anyway? I have lost an ability to know how much information is too much information? What are the costs of sharing? Big Sister pointed out that whilst My Myeloma is my own, it also belongs to others too, and she got me thinking whether my approach can be selfish? Is sharing selfish? I do not know how people feel about my diagnosis. Is saying I feel down enough? When does sharing personal thoughts become too much?

Do not get me wrong, some of my stoicism remains. Indeed it does. I am getting out and about and smiling after all. I am not constantly wanting to break down and talk about mortality, a stolen life, and infertility, but I want to feel like I am able to should I need to, and people will not run a mile if I do. I do not always want to talk about it either. For most of the time, I absolutely do not want to talk about it. I want to be to be able to say I feel let down, abandoned or jealous, without it being an attack on my character or a reason for people not to see me. I cannot help the thoughts, they do not feel like my own and I beat myself up over it. I want people to understand that and show that understanding to me. I do not need to chin up, it is not sufficient. I need the opportunity to talk. Again, I was talking to my counsellor and I surprised myself by crying whilst recounting a message I received from a friend, which showed some understanding and crucially, patience. I need patience too. In short, I want to be cut a bit of slack.

I fully acknowledge that this whole thing might not necessarily make me a hoot to be around. I get that it could be a chore. I get that I cannot articulate it and at times I may become a passive aggressive female dog. I get that this sounds selfish. I get all of it, but I need the slack. FYI, These fears are just some of the things I think about now. I am aware that this behaviour and talk may drive people away, indeed, I was warned of this fact. I am not going to talk about it over a post work drink, but it goes back to me knowing that I could if I wanted to, and it is from there that the isolation stems. Boom. Insightful.

This is what I need now. I need understanding, patience and slack. I have been assured that this will pass, it may even pass by November, who knows, I’m a strong gal.

The truth is, I am not strong enough to go it alone.

I don’t want everybody to become my counsellor, that would just be awkward. I want an army behind me. I have an army behind me, however, in this post transplant world, I have lost sight of who does what.

EJB x

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4 thoughts on “Share and Care

  1. Terri J says:

    I think counselling is a good idea. You are not emotionally tied to this person so you can say exactly what you are feeling. I know I have been being strong for my daughter & when I am alone just crying & raging at the Lord asking how could you do this . On the other hand I know she has been being strong for me because she doesn’t want me to get upset. I keep telling her I’m here for her, she can say anything she wants & just the other day she let out some of her feelings.
    Although she is in complete remission just yesterday they put her back on the chemo pill Revilmid because it makes the gap of the progression of the disease longer. I was surprised . I thought after transplant success she would be on nothing.
    So you have to think of this disease as always walking behind you, sometimes right behind you & other times lagging way in the distance. One day at a time.
    In awhile you will see that you can plan things a little far in advance. As my daughter said though she is not going to plan on saving a lot of money in her 401k because she doesn’t think she will be here at 70 as the financial specialist suggested.

  2. Justine says:

    I will join your army EJ. He’ll, I’m already in it, limping along, face screwed up with that damn bone pain, swollen on dex, spewing expletives when I drop my morning coffee cup…well lets be honest, my use of the F word was littered throughout my daily conversation yesterday, but I do say it with correct diction & a polite tone. Do I really need Toureetes on top of everything else???? .don’t know if I’m much good in your army but I want to join the ranks in supporting you, laughing, crying & sharing with you. I’m far away in Australia but I do have friends in old London Town that can drop around with a gift bag of compassion & patience. As for me…vent all you like, I appreciate your honesty on all fronts, continue to be real please, because in all honesty, it helps me get through this shit fight…I can’t do it alone either.

    Lots of love from F*%#¥ing Australia!!!!!!
    Justine xx

  3. Kirsti says:

    If you need treatment after your transplant, please ask them to give you Revlimid. It is the best drug available for all. After all, thalidomide did not do anything for you and the doctors are crazy if they want to put you on it again!

  4. I am in the EJ Bones Army… have been for awhile (no medals needed, please) and just want to say that when you have your entire body re-aligned with new (or fresh from the laundry) cells, it does affect you at a very deep level. I have seen this with my SIL and I know, as I know things, that in time the general outlook will improve. But saying that when all you want to do is rant, scream, rave, cry, throw things about or vent in some other way, is not very productive.

    Continue just to be yourself… know that those of us who know WHO you are can allow you to be just that for as long as you need to be there – in that place of Who Am I Just Now? – and really, none of us can make it alone. There is purpose for me in knowing that I am in your army just as there is purpose for you in knowing you have one.

    I leave a reply because I want you to know that there is someone out There listening, and that I see you, get you, and intend the best for you in all ways. But there are people in your life who struggle to know what to say to you because they are uncomfortable and afraid, too. That is their problem, not yours. I urge you to continue on your path of Being Real and set the example for those people who fear reality. You are doing a great job, and with the penchant people have for reality shows, perhaps you have a book in all of this… you are such a very good writer!

    No stiff upper lip, no being brave when you really don’t feel like it, but don’t lose your courage, girl… there are those of us who are cheering you onward.

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