Always expecting the worst

I have realised lately that I approach test results in a funny way. I think I literally always anticipate the worst case scenario prior to a doctor giving me the results, even though I have no reason to (i.e. no adverse symptoms). I think it is natural to try and prepare yourself for the worst news, but I have recently found I almost don’t believe the good news when I receive it. And I also don’t seem to feel any relief when told it is good news, which I find the weirdest part!! I almost start to think that the test might not of had a good enough sample, etc etc. This can’t be healthy thoughts!!

Does anyone else get anything like this?

I think it is a case of believing that I’m only going to be well for so long and then something will come and get me. I know the answer is simple ; “Live in the moment”. Enjoy the good spell now, who knows what the future holds. But indeed what does my future hold??? How can I plan ahead when I am constantly expecting bad news and also don’t know how long the GVHD, etc will last. Can I book a holiday in September? Will I be well enough to go? Can I go to a friends wedding in South Africa next year? Can I commit to a mortgage? Can I feel comfortable commit to a relationship?? Or even will I feel well enough at the weekend to go out for a walk with friends?  All very difficult when I’m struggling to see a future.

Anyway… test results have all been pretty positive of late!

Blood results – All good! No real change, all counts in the normal range.

Bone marrow results – Looking good and healthy. My cellularity is between 70-80%, showing good numbers of red cell/white cell/platelet precursors overall and no excess of blasts (immature rubbbish cells – indicative of my MDS).

Chimerism – I can’t remember the stats on this but I know that one of the blood types is showing to still be mostly my old donor, rather than my new donor (very confusing!!). But in order to help my GVHD and hopefully the chimerism, etc I have been put on a stronger dose of my immune suppressants.

Smear test – All good! Some low grade dyskaryosis (mild cell changes) but no hpv virus evident. So I don’t get to be felt up by a nurse for another year!

 

3 thoughts on “Always expecting the worst

  1. Sarah Reakes

    Hi Emma,

    I totally understand what you mean regarding hoping for the best but always fearing the worst. I really think this is absolutely natural and our way of preparing ourselves. Once you have experienced receiving a terminal diagnosis as we have for which we have received treatment that we are told only has a 50/50 chance of success, it is the only way to be. But is is bloody hard to live with and yes, it is a day at a time for all of us. On the plus side, we are being treated with amazing new treatments that gives us real hope for the future, and nowadays so many people are facing uncertainty with their health or living with managed conditions, that living for the moment is important but you are very young and you must allow yourself to plan once you feel ready to do so, but for now, give your body time to get over what has been a really major procedure to go through (and you have now done it twice!).

    When I had my diagnosis in November 2014 that my MDS had unexpectedly transformed to AML, I didn’t believe them especially as they had been equally taken by surprise, and so I asked for a second Bone Marrow Biopsy just to make sure they had got it right, and they had! I think because your first SCT did not work out, you are bound to feel apprehensive but there’s no reason to believe that this will go the same way. I know it is hard trying to be positive all the time, especially when there is so much sadness around us.

    Try and keep strong and positive; you really are doing amazingly well and a shining example to us all, but you are allowed to have doubts and uncertainties from time to time.

    Take Care.

    Love Sarah xx

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  2. Sarah carroll

    Hi Emma,
    My instinct is to tell you that if you dream it, then do it. In other words, book that holiday, plan for your friend’s wedding in S.A. and be open to falling in love. And why? Because you deserve it. If you think of it like this perhaps – what advice would you give to someone else thinking in this way? I recently read a little mantra that made me stop and think:
    Yesterday is history
    Tomorrow is a mystery
    Today is a gift
    Well, by saying yes TODAY to what makes you happy, then you have even more to look forward to as the gift of each new day comes.
    I can’t begin to tell you Emma how your blog has helped me personally, in dealing with some family & friends curve balls let’s just say. And you’ve opened my mind and helped me to look more positively towards certain situations. You deserve to have all of your dreams and wishes fulfilled, so keep dreaming and keep wishing (or start dreaming and start wishing).

    Lots of love,
    Sarah xxxx

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  3. HI Emma,

    Psychologists call this ‘catastrophising’, this is when you expect the worst case scenario even if there is no good reason for it. You’re absolutely right about living in the present being the solution. The thing is you are far more aware of your own mortality than most people who are ‘well’ but the truth is no one really knows what’s round the corner so do what makes you feel good and live every moment without thinking too far ahead. Meditation will help.

    Love,
    Kath.

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