#NotSecondRate

On the 24^th October I attended the Breast Cancer Care (BCC) Parliamentary reception at the House of Commons where the focus of discussion was increasing the support for people living with secondary breast cancer (SBC).

I was cordially invited to attend due to my involvement in BCC’s secondary breast cancer panel. My role in all of this will be to give feedback on my experiences so services can be developed . I like the idea of that and can’t wait to get started with it all!

I was reassured to hear at the event that there are politicians and professionals in the medical field behind BCC in their mission for change through their Secondary, Not Second Rate campaign.

UK cancer strategies fall short when it comes to supporting those living with secondary cancers, where most of the focus is on those recovering from primary cancers.

We are living much longer with SBC, however treatments and side effects make life complicated and so HUUUURRRAH for  Breast Cancer Care  and their work to help women like me to navigate the SBC world guided and informed.

The agenda of course fits in nicely with my own mission to improve the local support in Northamptonshire through The Living With Living Well project, so I was in my absolute element at the event.

It was my first time in the House of Commons. The building was not as intimidating as I thought it would be once I got though security. There was a magnificent Hogwarts feel about the setting and I wandered  through like a complete tourist along the corridors and halls, fascinated by its history.  

I arrived at the reception with Vicky , who I met in the queue and I felt a little awkward at the start with the whole ‘mingling’ thing , so I was pleased to see Ruth Fox my secondary breast cancer nurse  specialist there. Ruth was there to give a presentation about the work at Northampton General Hospital.

I hadn’t realised how lucky I am to have the support of a SBC nurse specialist. It seems only one third of hospital trusts provide this. Ruth has been so important for me in bridging the communications with my oncology team, being the friendly face of the medical world and providing me with continuity of care.

The #NotSecondRate campaign is seeking to ensure  every person with SBC has access to a nurse specialist like Ruth.  I don't think I fully appreciated until that day the full extent of the issue and it has stoked up that fire in my belly and I'm getting right behind this campaign.

It also happened to be the 5th anniversary of my primary diagnosis. This date always inspires some 
reflection on a life very much changed especially since my own secondary breast cancer diagnosis last April.

Each year serves as a bench mark. This time last year I was well into the throes of a 6 month docetaxel chemo regime, feeling like a zombie, and clinging on to dear hope, through the only comfort I could find and the only certainty in my life at that time, in the pending birth of my first grandchild.

Well, this year, I'm not doing ‘too bad’ actually and I’m looking forward celebrating Jonah’s first birthday on 30^th October with piñatas, pass the parcel and yummy cake.

It sounds a little dramatic, when I recall ‘out loud’ how I felt back then, and whilst my mind set has adjusted, the feeling of dread that I experienced was like no other. Those ‘cancer storms’ do creep back in ‘now and gain’ but today I can pat myself on the back and thank all my cheerleaders for getting me through the year!

My Friend Bernie came along to London with me and we both marked the anniversaries of our breast cancer diagnosis' with some champers at the Shard overlooking the sites of London. We chatted about the new and ever evolving versions of ourselves and decided we have a lot to be thankful for.

Metastatic Breast Cancer Day !!!!!!!!!

Some 'filtered' ramblings about metastatic breast cancer awareness day! 

It’s breast cancer awareness month, there’s  an explosion of pink all around us and what a great platform to provoke discussions, encourage women and men to check themselves and a fabulous opportunity to fundraise for research and services ! 

However, I’m ‘curious’ to discover that ‘someone’ seems to have designated just ONE day in all of the 31 days of October, to METASTATIC breast cancer. 

Medical advances mean that women are living much longer with INCURABLE breast cancer and there is a significant gap in services to support  the many women ‘living with’ SECONDARY breast cancer! 

This is the more ‘uncomfortable’ and ‘devastating’, less 'pink side' of breast cancer awareness. Never the less it is a very real aspect of the disease and as such, is as worthy of the full 31 awareness raising days of October, as the preventing it and beating it emphasis. 

I happened upon ‘Pinkoala’ a Facebook page belonging to Linda Garland, an illustrator and a breast cancer ‘survivor’. She is  illustrating and offering reflections and truths every day, all throughout October to raise awareness of all things breast cancer. 

I have found that Linda's illustrations and reflections convey the serious aspects of the disease in such an engaging manner. She injects some much needed humour into affairs and  she offers a fabulous opportunity for those seeking awareness to understand the realities in 'human terms'. 

I invite you to check out her daily posts.

Macmillan Press Release

With Living With Living Well project officially starting on 11th October, It has been exciting to work with Macmillan on this press release in time for breast cancer awareness month. 

Macmillan funds project to support women living with 
                           incurable breast cancer

Local charity Breast Friends Northampton (BFN) has received a support grant from Macmillan Cancer Support totaling £12,740 to deliver the ‘Living With Living Well’ (LWLW) pilot, a pioneering well-being programme for women living with incurable secondary breast cancer (SBC) in Northamptonshire. 

LWLW will use the funding to deliver eight well-being programmes over a 12-month period, with the intention of shaping services for women with SBC in the future. The support grant, which is the largest given by Macmillan in the area, aims to directly benefit over 70 women living with SBC and their relatives, by improving their quality of life and building a community where they can get support and share their experiences. 

Jo Meftah and Leanne Byrne are both living with secondary breast cancer and have joined the LWLW programme this year. Secondary breast cancer happens when cancer cells spread from the cancer in the breast to other parts of the body, most commonly the bones, brain, lung, or liver. It is usually treatable, but not curable, some women might experience a range of side-effects from living with secondary breast cancer and its treatment. ¹

Jo, 53, from Northampton was diagnosed with SBC in 2012, she said: “When I was diagnosed, each day in my mind was a step closer to death, six years later, with nine grandchildren, four born after diagnosis, I’m still very much here. I’m so very thankful for every minute but it is not easy living under this cloud, there have been some very dark days. LWLW is such a vital support which has long been missing. Hopefully from today, ladies like myself will be given the opportunity not just to live with cancer but to live well with it and thrive by getting a much fuller support network, not only medically but physically and mindfully.”

Leanne 31, from Wellingborough was diagnosed with SBC in 2017, she said: It was a huge shock knowing that the cancer would never go away. My first thought was that I was going to die, and soon. I was told by others with little understanding that I may not be able to do things due to my diagnosis. But you can live with cancer, and continue to do the things that you want to do. Twelve months on and alongside the treatment that is currently keeping the cancer at bay, I am studying for a professional qualification in social work.”

Leanne added: “This is what attracted me to the Living With Living Well programme. A group of ladies living with a secondary diagnosis, wanting to reclaim who they are and to be the best version of themselves, with help and support from each other. LWLW will enable us all to believe in ourselves again, and to reclaim, improve and maintain our wellbeing. To be able to share this experience with others in a similar situation, who know what it is like to live with secondary cancer, is invaluable.”

LWLW identified that there was a lack of support for women with SBC, and that their needs are very different to those with curable breast cancer. The LWLW project will comprise of eight six-week programmes that will be delivered by trained professionals from a lifestyle coaching company to empower women with SBC to ‘reclaim, improve and maintain’ their emotional and physical well-being. The sessions will focus on things like nutrition, movement relating to specific treatment, symptoms and side-effects, improving mind-set to manage life with incurable cancer. The grant will also fund ‘Theraplay,’ which is designed to help families manage difficult conversations and strengthen parent-child relationships through cancer treatment. 

Suzanne Wright, Living With Living Well Project Creator and Lead, who is living with a diagnosis of SBC herself, said: ““I was inspired to create the LWLW project following my own experiences of using a lifestyle coach from January 2018 to recover from chemotherapy treatment and work through emotional and physical struggles. This was a significant financial burden due to the hidden costs of cancer, however I was desperate. I had fallen into a black hole and felt physical and emotionally broken.

My aim has always been to live a fulfilled life; however, my life has been made somewhat ‘complicated’ by the physical and emotional symptoms of a lifetime of cancer treatments and the demands and anxieties associated with hospital appointments. 

When I began to feel the benefits of the coaching on my mind and body throught-out day to day life, I was determined to empower other women like me be the best versions of themselves and this is how LWLW began. You can get in touch with us by emailing hello@livingwithlivingwell.co.uk or visiting our Facebook page @LivingwithSBC.”