Being Founder of two organizations I split my time between working with both. The work I do supports breast cancer patients and is complimentary for both organizations.
2023 has been another very busy year with continued the never-ending work to address urgency and improvements for all breast cancer patients, and the focus on secondary/metastatic breast cancer patients via METUPUK because of the lack of focus we continue to see.
I work at national, regional, and local levels, and with many stakeholders to help make change happen.
This is a summary of various work and achievements.
I celebrated an important milestone with my family as our daughter Faron finished secondary school and went to her prom. Nine and a half years ago I didn’t think that I would see my daughter finish primary school let alone secondary school so seeing her off to 6th form college was a special moment.
We’ve had our usual great holidays in Spain and have spent the Christmas holidays here and about to see New Year with my family (well our son is back home with his friends) and with friends here who live in Spain.
The abcd 3 Peaks of Saddleworth Challenge was another success but very hot weather. We had great support with people fundraising for further retreats. Watch out for this challenge for 2024 that you can support by sponsoring one of us. Sadly one of my friends and supporters Sara died on the 1st December after diagnosed with MBC. Shockingly she died in the space of 4 days. This Christmas and today on New Years Eve I’m thinking of her and her family.
Grants and fund raising this year achieved over £15,000 and it’s important that we can keep delivering the abcd retreats as they are so beneficial to the breast cancer community.
Another 5 motivational exercise retreats delivered for 55 women from England, Scotland, Wales, Northern Ireland and Republic of Ireland. New dates for the 2024 retreats will be on the website in the next few weeks if you want to pre-register your interest so that you get an email when the dates are out then please go to the link here ABCD Retreat – booking page (abcdiagnosis.co.uk)
Nordic walking with abcd is getting more established. Another 2 instructors are trained for the FREE groups in Greater Manchester. If you want to find out about them then see the link here Facebook page for Nordic Walking with abcd. If you google GM Walking and “Nordic walking with after breast cancer diagnosis” you find a video of me and why you should do Nordic walking
The research study with Prof Nazanin Derakhshan from BRIC and using the infographics to help with FCR – Fear of Cancer Return has been written and submitted to a research journal.
Still working with various organizations like NIHR research project addressing inequalities in care, Salford University and the BEX SoMe project hopefully to resume in 2024, OncoEng and the Metastatic Spinal Cord Compression and surgery project.
Attended the Gilead awards in Madrid which was also had conference sessions for organizations with support for various issues and then attended the ABC (advanced breast cancer) Global Alliance conference in Portugal.
Hoping Abcd will resume control of the facebook page (!) after someone else seems to have taken over the page since September. Been addressing this with Facebook since then but a very annoying process.
I have a new abcd website which will be launched soon!
I was nominated for The Dianne Oxberry – Special Impact Award by Greater Manchester Cancer, and even though I didn’t win the award I am thankful for the recognition by GMC to nominate me and METUPUK colleagues to support this nomination.
I will continue the involvement with the Greater Manchester Breast Pathway Board.
GMCancer supported METUPUK with our first METUPUK patient led metastatic breast cancer conference. I had a meeting with Andy Burnham and asked if he would support a Taskforce and we additionally created a conference produced with the GMCAlliance.
Infographics – Tassia Haines our MEUPUK advocate in Wales helped to get them embedded across Wales. We will now look to get them in Northern Ireland and Scotland. We share them on every 2nd of the month for awareness called #2ndsOnThe2nd
METUPUK also had a Wales patient led metastatic breast cancer conference.
I’ve been involved in the Novartis #Momentsthatcount for the second year. I’ve attended panel sessions and created more awareness of MBC and the work abcd and METUPUK are doing with those and other pharma.
METUPUK are part of the NAoMe audit – the National Audit Of Metastatic Breast Cancer giving us a seat at the table so that we are given a voice regarding MBC data collection in the NHS.
Check out updates in the METUPUK Newsletter – sign up and you can receive monthly updates – go to the link on the website www.metupuk.org.uk
Health issues
Completed treatment number 158 and 2024 will be 10 years since I was diagnosed with MBC. I had to change treatment earlier this year and it’s been a challenge with the toxicity of the drug, side effects and illness with but a dose reduction has helped and feeling much better now.
Lymphoedema still causing problems in my left arm and breast area. I’m hoping to see a lymphoedema specialist early in the year.
I had to renew my driving license again in July and thankfully it was accepted.
And lastly please have a look at the METUPUK remembrance video that’s posted on their social media.
We won’t forget them…
Wishing you a peaceful New Year.
Jo x
