End of the year summary for 2022

End of the year summary for 2022

Introduction

2022 has been another very busy year as I have continued to work tirelessly to bring about improvements for breast cancer patients, especially secondary/metastatic breast cancer patients like myself.

I have worked at national, regional and local levels, and with many stakeholders to make change happen.

I am thankful that my reach and influence have been recognised through two high profile awards received at the end of 2022. These awards, together with the campaigns I have led and been involved with, have increased awareness of the very serious issues we live with and the need for change. The momentum achieved in 2022 will spur me and abcd on to do even more valuable work in 2023. The following is a summary of 2022 work and achievements.

I have also celebrated some really important milestones with my family. It was Regan’s 18^th and a huge milestone to be able to celebrate that with him as 9 years ago I didn’t think I’d see him leave school let alone finish 6^th form college, complete his A levels and turn 18. He’s now looking for a Degree Apprenticeship. I’ve been supporting my daughter with her last year in school completed her mock exams and now it’s focusing on her GCSE’s. I took her to London for a mum and daughter weekend courtesy of a friend winning a night in a hotel there. Also it’s a pleasure spending and enjoying time with great friends. We’ve had some great holidays in Spain and spent our Christmas and New Year there with my family and with friends who live there.

Involvement for Improvement

I’m a patient representative on the Greater Manchester NHS Breast Pathway Board which directly feeds into improvement plans for the treatment of primary and secondary breast cancer patients across Greater Manchester. The end of treatment summary report now includes my red flag signs and symptoms of secondary breast cancer infographics, and we hope as a result that women will feel empowered to recognize and pursue issues at an early stage that will in effect mean that they are treated quicker and therefore experience better outcomes.
Infographics – they have now been translated into 11 languages and are being used worldwide to help other patients recognize the red flag signs and symptoms of SBC/MBC. I had a breast surgeon contact me the other day from New Zealand who is using them and the website! They are downloadable in pdf format or just share them on social media on #2ndsOnThe2nd highlighted every 2nd of the month.
Greater Manchester Cancer Multi Disciplinary Team reform team we looked at improvements for MDTs
NHS Breast task & finish group which looked at supporting the on-going improvement effort to shorten diagnosis pathways, reduce variation, improve people’s experience of care, and meet the Faster Diagnosis Standard.
2 years into working with a 4 year NIHR research project aiming to inform organisations of Cancer services in the NHS and addressing inequalities in attending different cancer centres.
Working on a project with Salford University which continues the work that Dr Bex Lewis started. The project is called BEX SoMe – Building EXpertise in Social Media for Cancer support
NHS Project over 5 years re Metastatic Spinal Cord Compression and surgery to support this before spinal cord compression happens.
Created videos for pharma industry for awareness of SBC and the work abcd and METUPUK are doing.
Working with the NHS & Use My Data in relation to improvements in data for secondary breast cancer. We have collectively been working on for 9 years! Watch this space.
Abcd had some legailities with protecting the logo aswell as the sbc infographic

In addition check out update I have given in the News letter for METUPUK sign up and you can receive monthly updates https://metupuk.org.uk/help-us/metupuk-newsletter/

Patient Advocacy at Conferences

ESMO Paris 2022
EBCC Barcelona 2022
Greater Manchester Cancer conference 2022
Working with ethnic groups where breast cancer is a taboo subject, for example local Asian womens cancer awareness where screening and awareness messages of breast, bowel and gyne cancers were highlighted for young mums with children.

Campaigns

BCAM #Istandbythe31 campaign in 2022 was taken forward by primary breast cancer patients to show solidarity for SBC/MBC patients. METUPUK did this last year and we had a great response as we did this year.
Secondary Breast Cancer Day 13^th October huge success for METUPUK with the Darker Pink advertisements on social media and on national TV in Ulster and Scotland. https://twitter.com/i/status/1580595136752685056
Novartis Moments That Count Campaign being a strong role model, giving inspiration and hope to other secondary breast cancer patients by showing that patients can live and contribute to society with a SBC/MBC diagnosis and should not be written off. Here is the video https://www.momentsthatcount.co.uk/moments-count-ambassadors

Fund Raising

Our first group fundraising event for abcd! “The 3 Peaks of Saddleworth” we aim to try to deliver this once a year in May so that we can continue to support further retreats. Watch out for this challenge for 2023!
We had many donations and fund raisers this year, achieving over £25,000 and it’s important that we can keep delivering the abcd motivational exercise retreats therefore fundraising is key.

Abcd work

5 retreats delivered with 55 women from England, Scotland, Wales, Northern Ireland and Republic of Ireland, evaluations/ comments
Development of the Nordic Walking group with a few of the members launching their FREE nordic walking for breast cancer patients. 2023 will see all of the instructors be providing free nordic walking across Greater Manchester. A poster is attached and also have a look at this video https://gmwalking.co.uk/nordic-walking-with-after-breast-cancer-diagnosis-abcd/
I have been appointed as Trustee to Cancer Rehab Trust a Charity founded by the fantastic Dr Prof Anna Campbell. I have been interested in the work they are doing and online service they offer. Anna also recognized the work I do with the retreats and breast cancer patients so that was why I was asked if I wanted to join as a trustee.

Winning 2 awards!

The National Lottery chose abcd to give the the “Local Health Hero Award” this is for the amazing abcd retreats that we have been delivering for over 6 years and getting the support from the National Lottery through grant funding that we have applied for. I attended an event in London where I was presented with the award. There were people attending from the Government like Rishi Sunak and Kier Starmer and many other MP’s, top leaders in the NHS, Amanda Pritchard and Cally Palmer and other NHS workers who were there to accept awards for the work they did in the last year. Lots of celebrities attended and it was hosted by Davina McCall. In my speech, I was able to highlight the issues that SBC/MBC patients face.
Women in Marketing with the “Best Leader in Creating Change in Health and Wellness Award” this is for the work with the campaigns and the infographics to raise awareness of secondary/metastatic breast cancer. A very prestigious award and after working in Marketing in my previous career it felt great to receive this accolade.

Research

Started a research study with Prof Nazanin Derakhshan from BRIC about the infographics about FCR – Fear of Cancer Return and we have numerous people who have applied to help. (poster attached)

Health issues

Completed treatment number 143 and 2023 will be 9 years since I was diagnosed with SBC. I’m still on first line treatment (trastuzumab/pertuzumab (Phesgo)) and very thankful to my oncologist Dr Greg Wilson and his team who always support me.
Started physio as after having tests it was shown that I had Long Thoracic Nerve Palsy in my left shoulder which basically means that my shoulder blade “wings” caused from surgery I had back in 2020 after all left side lymph nodes removed in the axilla.
Lymphoedema causing problems in my left arm and breast area. Causing more problems than the cancer currently.
I finally got my driving license back in July 2022 after 2 years and 3 months of not being able to drive due to brain mets and having to wait for 2 years to reapply.

See the METUPUK remembrance piece on the website which acknowledges friends who have died. We won’t forget them…

That’s it for 2022! In 2023 we will have a new News Letter that you can subscribe to so please watch out for information.

Wishing health & happiness.

Jo x

Double click on the photos to see a better image.