Joanne's Story

About Joanne

I’m nothing special; I’m just the very proud parent of an amazingly strong young woman called Emily, who lost her life to Brain Cancer.

I walked by Emily’s side every day throughout her 3 year battle with this horrendous disease – as a parent, I shouldn’t have had to watch my daughter go through the pain of treatment, let alone suffer the mental torture of knowing she was terminally ill.

Emily had to endure people’s ignorance and judgement on the way this disease took over her appearance and personality. Emily just wanted to live what life she had left, with a smile on her face and love in her heart.

It’s extremely sad and quite heart-breaking to think how someone else’s ignorance and cruelty can break such a strong spirit.

So I find myself and the best friend anyone could wish for, (Claire) going on a journey of education and recognition of hidden diseases and the effects it has on the individuals living with it.

We don’t have all the answers, I don’t think anyone will ever have them, but what we do have is experience of being unduly judged and treated with such ignorance and contempt. Our ethos is to embrace life no matter how different it may look.

From early diagnosis right up to literally weeks before Emily passed away, she was subject to uneducated judgement and plain cruelty.

Cruel behaviour

Early diagnosis Emily was put on steroids and subsequently put on a lot of weight. She wanted to cheer herself up so went to a local designer boutique and was treated appallingly.

They didn’t recognise her as a loyal customer, in fact while trying clothes on in the changing room she was subjected to ridicule by the staff. Quite obviously talking at a level that was aimed at us they said ‘really, REALLY why would you bother‘.

I was furious but Emily grabbed my hand and said, mum, they don’t know. Emily bought the trousers even though they clearly didn’t fit and we headed back to the car, the same car she wasn’t allowed to drive anymore, and through tears streaming down her beautiful face she told me she wanted to end her life.

I can’t even put into words how that moment made me feel, there are no words.

Next, not long before Emily passed away we were in a local charity shop when Emily needed the toilet. The thing people don’t understand is when you’re on daily chemo you need to access facilities quite quickly. Well she was point blankly refused access and even after showing the staff her chemo card, they remained firm – no. We were directed to the nearest pub but unfortunately didn’t make it in time.

As a result, Emily never went back to doing her favourite and much-loved pastime; shopping in charity shops.

Even experts get it wrong

Lastly and possibly the most disturbing experience, wasn’t just experienced by Emily but also by us – her struggling, grieving and loving family who were literally, just about hanging-on.

Emily was in a place of safety with loving and beautiful people who cared for Emily so amazingly, we couldn’t ask for anything more.

Except on one occasion;

Emily was subjected to an outburst of cruelty and degradation from someone who should have shown her care and compassion. We witnessed this and because we were so shocked, we didn’t really have time to register and react appropriately.

All I will say is this one single action changed us as a family and just made us stop and realise that even people who have good in there hearts, had the best training and preparation for such a difficult situation, can also get it wrong.

“Let’s change the journey our loved ones take as we try as hard as we can to cure them – we are but human…”

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