Former IT & data geek, now @metupukorg Patient Advocate, trying to navigate living while dying #inflammatoryBreastCancer

Joined December 2011
225 Photos and videos
Kat Southwell (nee Lee) retweeted
It is with enormous sadness that Jo Taylor, an amazing wife and mum passed away peacefully, surrounded by her family at 8:18am on Monday 3rd of November. Please allow her family some privacy to grieve together. #IAmThe31 #BusyLivingWithMets #SecondaryBreastCancer #MetastaticBreastCancer #DarkerPink #DyingForACure
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Me, need to get a refund from @Argos_Online . Help link virtual bot which was no help. Use their X help site DMs “hi welcome to our virtual assistant” (the same useless FAQ pointer as before) Also the typo on the virtual bot made me chuckle. AI isn’t taking us over quite yet.
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Kat Southwell (nee Lee) retweeted
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Kat Southwell (nee Lee) retweeted
30 Dec 2024
On behalf of all the Trustees, volunteers and supporters of METUPUK, we would like to offer our heartfelt congratulations to our Founder, Jo Taylor, for being awarded the British Empire Medal in The King's New Year Honours List 2025. A much deserved recognition for years of work in improving outcomes and quality of life for patients with breast cancer. Jo was diagnosed with breast cancer in 2007 at the age of 38, months after giving birth to her second child. After diagnosis, Jo was shocked by the lack of information on reconstructive surgical options for patients with breast cancer. To address this gap, she created the website After Breast Cancer Diagnosis (ABCD). Jo later added information on diet and exercise and set up residential Exercise Retreats for patients with a diagnosis of primary or metastatic (secondary) breast cancer. When Jo was diagnosed with metastatic breast cancer (MBC) in 2014 she once again became aware of lack of information being provided to patients. Although 30% of patients develop MBC, sometimes years after primary breast cancer, women were not being informed about what to look out for. Jo designed a Red Flag Infographic aimed at patients with a history of primary breast cancer to show the signs and symptoms of MBC. These Infographics are now signposted throughout the NHS. In 2016, Jo founded METUPUK after connecting with patient advocates in the USA. At first it was a loose coalition of likeminded patients campaigning for improvements in outcomes. In 2021 METUPUK became a registered charity, the only UK charity solely dedicated to patient advocacy for MBC. The four main areas of focus are increasing awareness of the signs and symptoms of metastatic breast cancer, increasing access to innovative treatments, improving information and access to clinical trials and improvements in data collection. We are very lucky to have Jo as our Founder and Chair of Trustees. Thank you for all your hard work.
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Perfect in every way #gavinandstaceythefinale
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Please @LloydsBank bring back the old app. It was the best. Now it looks like Times New Roman has had a party and stayed.
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I don’t think many people realise this. We are going backwards in cancer and yet have some of the brightest minds in the world!
It’s #WorldCancerDay 2024 & 🏴󠁧󠁢󠁥󠁮󠁧󠁿 doesn’t have a National Cancer Plan. This not for want of a vision ⬇️ @AggarwalOnc @cam_colorectal @AnnaKirby17 @QUBCancerProf @sar_quinlan @cancermedic @tomroques @BreastDocUK @fmw22 @prof_price @SullivanProf @TheLancetOncol @RCRadiologists
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Kat Southwell (nee Lee) retweeted
18 Jan 2024
✨ Which COSD data items are important for the NAoMe? We've compiled a list of "Key Data Items" which highlights COSD data items to make sure are being completed for all patients with metastatic #breastcancer. Access here: bit.ly/3tOU9Wk @useMYdata @NHSEngland
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My 100% track record of crap flowers from @waitrose continues. Went back to using them after a trashed parcel of bulbs several years ago. Ordered for a very close family friend and look how they have arrived!! We chose specifically so that it would be easy for her to enjoy 🤬
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Kat Southwell (nee Lee) retweeted
15 Dec 2023
Winner of Celebrity #Mastermind is @TerryChristian! 🏆 Fantastic that he beat all the other celebrities & very kindly supports #METUPUK as his chosen charity & thankful of his ongoing support Congratulations Terry! You're always our winner! @CliveMyrieBBC @mastermindquiz
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If @philippahether had been alive today she would have totally approved of the first recipient @MsZoeBarber to the award named in Philippa’s honour ❤️💔
Well deserved award for outstanding contribution! ⁦@MsZoeBarber⁩ ⁦@METUPUKorg⁩ ⁦@macmillancancer
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The amazing Zoe Barber - in all my years in MBC I’ve never heard someone get it so right in what they are saying 👏👏👏#mbcwales
23 Oct 2023
We are back from lunch and honoured to have @MsZoeBarber from @CwmTafMorgannwg University Health Board Trust presenting her work on Mapping the Metastatic Breast Cancer Pathway for Wales. #MBCWales
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Professor Tom Crosby, OBE, Consultant @VelindreCC & Medical Director for @WalesCancerNet asking Eluned Morgan for support from Government to deliver the changes needed to support cancer in wales.
23 Oct 2023
Next up, we are delighted to welcome @Eluned_Morgan MS who is the Minister for Health and Social Services. @TassiaHaines has been working with members of @SeneddWales to raise the profile of MBC in parliament. #MBCWales
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Anything that starts with “at least…” which actually applies to so many scenarios in life
15 Sep 2023
Seagen are listening to the #MetastaticBreastCancer community & have heard some well-meaning comments might be difficult to hear To further understand the experience of people with #MBC please complete the survey in the link buff.ly/3qVWlda #FightingPlatitudesOfMBC
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Kat Southwell (nee Lee) retweeted
24 Jul 2023
We're run by volunteers, most living with #metastaticbreastcancer & we rely on efforts & collaboration of individuals like you. We're behind some monumental changes over the UK. Exciting developments are happening. Will you be a part of it in Wales? ---> join-us@metupuk.org.uk
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Kat Southwell (nee Lee) retweeted
Pain can be a major barrier to everyday activities in women w/ breast cancer dx. New study by BRiC investigates pain experience for better pain management strategies 👇🙏Please participate and RT @abcdiagnosis #breastcancer @METUPUKorg #metastaticbreastcancer #PainManagement
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Kat Southwell (nee Lee) retweeted
In case you were on a different planet and missed the big news, we have now had 11 days in a row setting new all-time modern global temperature records, peaking at 17.233°C on July 6, quite possibly the hottest 11 days globally in the last 100,000 years. washingtonpost.com/weather/2…
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Thank you so much for choosing to support @metupuk Mary is woven into so much of what we do daily and who we are 💔
Hello all! Recently @ellierosehuckle lost her mum, after a long battle with cancer. In her memory, @whatnikididnext & @AdrianLong3 have set up a Justgiving appeal in support of Mary's chosen charity, @METUPUKorg justgiving.com/fundraising/m… If you can? Please contribute / RT 🙏🏽
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Hot footing from our @metupuk Metastatic Breast Cancer conference in Manchester last week with @GM_Cancer we are now showcasing our MBC clinical trial dashboard at the British Breast Cancer Group’s annual meeting in Brighton. Very honoured that we are allowed to attend.
Great to see ⁦@METUPUKorg⁩ spreading their really important empowering information for those with breast cancer ⁦@abcdiagnosis
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In the back of the room at the #britishbreastgroup annual conference in Brighton @kittyfairhurst presenting on RESTORE feels like the 1st time since my diagnosis in 2018 that I’ve heard a positive acknowledgment of symmetry surgery as an option 🙌 @FlatFriends_UK @METUPUKorg
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Maybe in the future, women like me won’t have to sell a house to pay for symmetry surgery privately.
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