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Emma's five ways to improve cancer services

 

Emma shares her five strategies for improving cancer services, from fixing the horrific waiting rooms, to creating a post-cancer MOT. 

EmmaMy Experience of Diagnosis

I’ve always been a bit of a fighter: battling for the underdog; shouting out if I saw injustice. I’d just managed to get my special needs son into a great school after a battle with a particularly unhelpful SENA officer at the County Council.

So when I had a lump near my armpit causing some discomfort, I joked that maybe one battle had finished as another one was about to start. Fate’s a bugger isn’t it?!

When my GP (who was great) referred me to the breast care unit, I was sent leaflets about what to expect. But nothing prepared me for them wanting to take core biopsies from that lump as well as another they had found in my other boob. I was only 36, relatively fit and a busy mum.

I struggled with just a week’s waiting time, we were due on holiday the following Monday...how would I make the appointment? I rang the unit and a nurse confidently told me the results were clear and consistent with fibroadenomas- go on holiday and the consultant will ring you around your appointment time. What a relief!

She explained the advice was to leave the fibroadenomas and they may clear up on their own with time. As one of the lumps hurt, I asked if she would remove it anyway.

A few weeks later, the lump was removed via a wide local excision - no clear margins were sought as it wasn’t considered to be cancer.

It took around 6 weeks to get the results. All of this time I believed I was cancer free. But when I finally entered the consultant’s room, there was a breast care nurse there too. I had attended on my own, in fact I was in running gear ready to run round Bradgate Park after the appointment - so confident was I that this was just a formality.

My world collapsed when the surgeon told me they had found grade 3 cancer in the fibroadenoma. It had caught them all by surprise. I felt like I had been positive and then been slapped back down by shock along the way. The impact of waiting for this diagnosis for four months on my mental health was profound.

What could have helped?

  1. Never make assumptions

 Professionals shouldn’t make assumptions based on generalisations or stereotypes. If there is even the tiniest bit of doubt on a test result, clinicians should treat what they are removing as though it is cancer. I had to have an extra operation as I wasn’t given clear margins to begin with. Assumptions were made because I was youngish, fit and apparently healthy...assumptions that could have killed me.

  1.  No more horrific waiting rooms

The waiting room in the hospital was a horrific place, no matter what stage in the process you’re at.

Every time I’m there I just want to hold their hand or hug them. People would benefit from discreet screening so people aren’t all on show in one big room. There should be helpers that you can approach if you feel anxious or you’ve come alone and instant access to counselling services. 

  1. Immediate mental health support

 The biggest issue is that the NHS relies on charities to pick up the counselling and mental health support.

On diagnosis support needs to be in place immediately. A breast care nurse or volunteer needs to sit down with the patient and guide them through the next steps - not just give them leaflets but sit and actually listen to their concerns / fears. Referrals must be made then and there.

The NHS mental health system in Leicestershire is dire. I slipped through the net time & time again. Even when I ended up in a mental health unit I was told that a CBT appointment had an 18 month wait. Let’s Talk, my local mental health service, wouldn’t touch me after I had been in the unit; ‘too high risk,’ they said.

  1. The NHS needs more staff!

And most fundamental of all, the NHS needs more staff! There are simply not enough nurses, even on the chemo suites. They are overworked and tired. 

  1. Create a post cancer MOT

There needs to be a full body MOT after your last treatment to determine what has possibly been affected. Personally, I have a constant headache, made worse if I wear my glasses, but no one has any idea what it could be. I didn’t have this pre-chemo. I also don’t know if I’m menopausal.

Whilst I will always be eternally grateful for the treatment, there is little in the way of support for any life long changes it can have. I have had no follow up from oncology a year post chemo - I have had to chase them.

Emma is 38, a mum, and a Sport Development Officer at Harborough District Council. She started getting active in 2012 training for a Cancer Research Shine night walking marathon after a friend’s breast cancer diagnosis.

Fast forward to now, she's set up my own running group @emotiverunning, completed the London marathon, and various triathlons. Them she faced her own breast cancer diagnosis in 2019 and subsequent journey through the mental health system. 2020 was to be the year of piecing everything back together. Despite COVID it has certainly been a better year! 

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Discussion

Jill dixon (not verified)

I agree that a full mot should be given after treatment ended as every ache and pain I feel after treatment for triple negative breast cancer stage 3 makes me feel like the cancer still in me but moved to somewhere else its just as scary as first been diagnosed

Vicki (not verified)

2 years ago I was diagnosed with breast cancer. 2 years I have begged time and time again for help for my mental health. I have been passed from pillar to post. Or ignored. And only just had a formal mental health assessment! And been told 2 to 3 year waiting list for help with PTSD. I have been lucky and had some support via hospital physcolagist team which I do appreciate. But my life fell apart and twice sucide was inches away.