Time for compromise?

I’m sorry but tonight I feel like I want to have a bit of a rant and a whinge. I’m tired, I’m angry and generally fed up! I’m angry how this disease is taking over my body again. I’m angry that it means I’m having to make compromises I don’t want to make.

My blood results are getting steadily worse. For those who understand the numbers: hb 93, platelets 22, neuts 0.7. So my red blood cells are getting to the point I will shortly become dependent on blood transfusions. The reasons for the counts dropping are not certain. The chemotherapy will definitely be making my counts drop, but also it is likely the disease will be effecting them too. I’m having a bone marrow biopsy on Monday which will help to establish if the current treatment is doing its job.

In the meantime my physical symptoms are getting worse. I’m getting tired…. the real word is fatigue….But it still doesn’t explain it properly. Just a real heaviness in my body and also a kind of brain fog, like its difficult to focus and concentrate on things properly. I’m getting daily headaches. I’m getting out of breath doing stupid things like going up the stairs (weirdly I’m still fine if its steady cardio, but if I suddenly do something my body doesn’t seem to be expecting then I struggle). I’m getting dizzy as my blood pressure is low. My digestive system is all messed up, blah blah blah

I’ve got to the point where I need to recognise I need to stop doing everything I’m doing, but I don’t want to! I work 4 days a week at “the day job”, but my real passion lies in the fitness industry where i teach a couple of fitness classes a week. On top of this i’m juggling hospital, visiting family, trips out with friends, etc, etc. And its all getting too much but how do you choose what to give up?

I want to be able to put my effort into work, so i can show my new employer that I am a good worker and go up the career ladder. (More importantly I need my job to pay for my mortgage!) I want to keep my passion for fitness going and strive to get stronger and fitter. I want to be able to go to social events, be able to enjoy them and be the social butterfly i used to be! And I want to do all of this…. like most other “normal” people. It seems most people take for granted the fact they are able to do a full days work, and then still feel energetic enough to go out to the pub/cinema, etc that evening.

And I know “But you (I’m) are doing so well for someone with cancer”…. Do you know how many people have told me something similar to this over the last few months. Like I should be grateful that I don’t have to give everything up, that I only have to make a few compromises and listen to my body. Well I don’t bloody want to listen to my body. I want to keep doing all of the things that I enjoy. I don’t want to bloody compromise…….

Rant over….

P.S. I know people mean well. And I know there is no right thing to say in these situations. And I’m not angry at the people that say these things, cos what else do you say? I’m just angry about the situation!!

7 thoughts on “Time for compromise?

  1. Sarah Reakes

    Dear Emma I totally get how you’re feeling & as you say whatever anyone says it’s you going through this ordeal & having to come to terms with the reality of it.

    It’s good to let out the anger & you are entitled to feel this way as life can feel so bloody unfair especially as you had started to get your life back & felt normality again. You’ve been through so much & shown amazing courage & fortitude for someone so young & you’re a real fighter not only for your own health but for the sake of others.

    I think in order for you to allow your body to heal from this recent set back you do need to slow down & make the compromises you are talking about & I absolutely get that’s so hard for you to do having fought so hard to get where you are.

    I think about you daily ever since you announced that you had relapsed & truly I’m willing you on to beat this bloody awful disease & I can tell that you have an amazing circle of supporters thinking the same way.

    All us ‘survivors’ struggle with day to day issues & symptoms & I think we do truly understand how you’re feeling right now. Every check up & set of blood tests sets off the anxiety that we try to suppress. It never goes away & we’re all living on the edge. I have my three monthly check up next Tuesday & I know it’s praying on my mind especially as I’ve been feeling rubbish lately.

    You’re allowed wobbles, indeed you have to have them, as a safety valve to keep going. I do get that it gets more & more exhausting trying to fight it but you have a great zest for life & you need to hang onto that.

    I’m thinking & praying for you!

    Love Sarah xx

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  2. Diana Lockyer

    I am so sorry to hear that your bloods are decreasing Emma. It is natural to feel cross and frustrated when you want to be able to get on with an active life. I have similar feelings about fatigue. I try to do every day things and then realise its been too much and I hve to rest. Hate it! As you say, there is not much anyone can say to make you feel better. You are a really courageous, intelligent, young woman who has certainly inspired me and my husband Pete. We were so impressed by a talk you gave us some years ago at the MDS Support Group. It was before your second transplant. You were so knowledgeable about the disease and positive about the future. Lots of love, thoughts and hugs xxx

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  3. Emma, I just want you to know that I am thinking of you. I’m at the start of this journey and have been so inspired by your courage and positivity so far. But you are human and you are bound to feel pissed off and defeated at times – but remember you are strong and resilient and you have made a difference to others and you will do so again. Have you investigated any kind of experimental gene therapy? I don’t know what’s on the horizon for MDS but perhaps there is something in the US that is worth researching? Worry about the practicalities later. In the meantime keep up your yoga and think “bite sized “ for everything else….Hugs xx

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  4. Kelly Cumming

    Thanks for sharing… what you wrote is exactly how I am feeling. Its hard to explain to people how tired you actually ate when you look normal. I often get the impression people think that I’m just lazy, or I don’t want to socialize. .. or “maybe I’m just not eating the right food” or ” I should eat more”. At the moment, I really have to choose between exercise, work or socializing and obviously work comes first.. then a bit of exercise is a push.. socialising just does not happen.. I want to do so much and I just can’t..

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