This one’s about Me!

Usually my blog is for Duchenne and the life it leads us to, but life changes and I still need to write….

I am not sure how to describe the last 4 months. “Cancer whirlwind?”

Feeling like I should have been dealt all my cards already with William’s diagnosis 5 years ago, to then be dealt the blow of cancer is crushing.

I could ask ‘why me?’ & I do wonder what is really going on out there to deserve this life.

As if we haven’t had enough of recent years being truly wrecked; not being able to give ourselves and our kids life experiences due to Covid. Just when I was starting to plan some holidays abroad, get William to the sunshine and going down water slides while he can still walk….the big C hits.

It takes up our whole summer school holidays, it takes over my mind…..

Out of nowhere.
No history.
Just like Duchenne.
Just my fucking body playing very nasty jokes on me.
Well, it’s not funny.

I HAVE HAD ENOUGH. I am so angry. I am so fed up. I am just so over it all and I want my life back.

I am fed up of being strong, being that ‘smiley’ mum. Keeping that level head. Because behind the surface is a very very angry woman who hates a LOT of what is going on around her right now.

I am fed up of lack of sleep since surgery. Fed up of sheer anxiety and nightmares every, single, night since diagnosis.
What next? Has it spread? When will it return? Will the next scan be OK? Do I need chemo? How will I react to hormone therapy after I get the all clear?

I not only have cancer to think about; I have Duchenne, and this is becoming more and more worrying. More evident. More declining. More worries of the future. More stress.

I need to be around for my boy. To be his voice, to be his rock.

I need to be here for my wonderful daughter to watch her grow into the most beautful soul searching human being I know she will be.

I need a break, a very, very big break.


2 thoughts on “This one’s about Me!

  1. Dear Jo – there are no answers to WHY me. Why not me you could say. I’ve been in some incredibly dark places from being on life support, finding myself paralysed and told I would never walk again to then be told I had 6 months to live – still here 10 years later. Then there are other issues that have impacted my family for the last 25 years and continue to do so. But I suspect your main concern is for your children and my heart goes out to you in that respect.
    Somehow we find the strength to carry on because we have to. Inside we have changed and nobody really knows how we feel. I used to think others weren’t suffering and had charmed lives but that’s not true. You have great support around you – you find out who your real friends are.
    However hard it is Jo – keep being strong – keep being you.
    Much love


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