I was totally shocked and saddened by the news that friend Leila Asoko died on 30th November.

A vibrant, intelligent, passionate, articulate, beautiful, ballsy, black woman who came on the abcd retreat in June 2021.  It was after just being allowed out of lockdown and we were all very giddy and excited to be safely with other people and hug.

She was such fun.  Chats prior to attending and I knew I’d have my hands full as 3 of them wanted to go wild swimming, one of them being Leila.  So, another friend Jen who also helps with the retreats decided to take them on Sunday morning to a nearby reservoir.  This photo is priceless.  And really shows the fun, excitement and craziness of Leila.

We all kept in touch of course, like all the retreat members do on our whatsapp groups and when we decided to do our #DarkerPink campaign Leila was a person I thought would get a message across.  I wrote a script purposely for her, being a black woman, who needs to be heard and wanted her to use this platform to get messages out about the lack of support for black women with secondary breast cancer and also due to the fact that there were issues with clinical trials that much research doesn’t include black women.  I had also talked to Leanne Pero and loved the #BlackWomenRising campaign and Leila was so much like Leanne – a strong black women who would stand up for inequalities.

Here is Leila’s video bio and video for #DarkerPink https://metupuk.org.uk/darker-pink/leila-asoko/

At the end of October, she went to see the #DarkerPink campaign installation of the pink figures at The Corn Exchange and shared with the campaign group her photos.  Here are a couple she took and was excited to see her figure with her name on it.  She was proud of the campaign.

She must have made an impression as I went to show my daughter the pink ladies at The Corn Exchange a few weeks ago and one of the security guards saw me taking a photo and talked about Leila and I said her name “you mean Leila” and he said yes, he was articulate about her how she was excited to see them and be photographed and he also took out a piece of paper so he could explain to people what the campaign and installation was all about.  We talked for over 15 minutes, and it really touched me that he was so blown away by it all.  He couldn’t believe these young, vibrant women were actually “dying” and again the injustice of it all. 

So, I hope that Leila wouldn’t mind apart from sharing her memoriam with you all, but also wanting to try to initiate change, as I know she would want me to shout this from the rooftops.  We talked about issues with awareness and feel this is the right place to try to highlight some issues:-

  • Why after primary breast cancer do we have an annual mammogram on the other breast when fact is only *3% of people will develop another primary breast cancer?
  • Why after primary breast cancer are patients still not told about secondary breast cancer when there is ~30% risk of developing it and that can be up to **32 years later?
  • Why after primary breast cancer are patients not given the infographics which is ratified by Greater Manchester Cancer and signposted by NHS England?
  • Why after being told you have secondary breast cancer do you not have a regular brain MRI when there is information saying that this is necessary due to the risk?

* Contralateral breast cancer: incidence according to ductal or lobular phenotype of the primary https://t.co/9SWW9nDHOk

** Risk of Breast Cancer Recurrence Persists up to 32 Years After Diagnosis https://www.cancertherapyadvisor.com/home/cancer-topics/breast-cancer/breast-cancer-risk-recurrence-persists-up-32-years-after-diagnosis/?fbclid=IwAR0wTyenEoXWdtSanfvrkBWGb3TsuSeHY12vhppJRUnVHX780gxwhAa8e4g

NOTE: Patients with Small Cell Lung Cancer get monitored for brain metastasis because it’s so common so why do metastatic breast cancer patients not get monitored?

I think many of us are still in shock that this happened so quickly with Leila.  3 weeks from being told she had leptomeningeal brain metastasis to her dying is tragic, but maybe if she would have been monitored properly, if those at high risk were monitored properly, then she would at least have had more time with her family.  

We miss you Leila.

We won’t forget you my friend x

By MetUpUK Founder, Jo Taylor

www.abcdiagnosis.co.uk

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