Jo's Breast Cancer Treatment
Barely 9 months later, our world came crashing down in one phone call – who knew cancer could sit dormant for years? Who knew you can go from cancer ‘free’ to stage 4 incurable breast cancer in bones and liver without any warning? No lumps or obvious signs.
Not us or anyone we know – we thought we were educated in the breast cancer world – we were in fact in the dark the whole time. We know now.
This campaign asks you to both support Jo’s unfunded NHS medical costs and crucially to raise awareness of Metastatic Breast Cancer.
Since her recent diagnosis, with dignity and determination, Jo has again sat in the high-backed chair and undergone her chemotherapy, radiotherapy and hormone treatments in an effort to fight this incurable form of cancer. However, the NHS treatments can only help to a point – a point which Jo and everyone who knows her finds unacceptable. Jo has researched, read and researched some more - there are treatments available which the NHS do not fund for people with mets in more that one place in the body.
For the liver mets there is a treatment which offers Jo great hope - SIRT - Selective Internal Radiation Therapy. SIRT is a way of using radiotherapy to control cancers in the liver that can’t be removed with surgery. It is a type of internal radiotherapy. It is sometimes called radioembolisation.
SIRT is not funded by the NHS and currently costs £35,000 approximately per treatment cycle. In an effort to raise funds in support of the treatment, Jo, her family and friends will be undertaking various fund raising events, including a run and a cycle event from Dingwall to Kilmarnock.
Jo is grateful for every day and is doing everything she can to manage this cruel disease. Of particular importance to Jo, is her wish that anyone with a diagnosis of breast cancer is informed about secondary breast cancer, to know that there are thousands of people living with secondary breast cancer, but the profile needs to be raised and more research is needed. Jo’s fund raising events will contribute a % of any monies raised to support secondary breast cancer research.
My fund is now over £35,000 thanks to all of you wonderful people continuing to support me; to say I am humbled and grateful beyond words feels like a complete understatement and I can never truly thank you.
This year has been a very difficult one full of uncertainty. In January, the hormone treatment that was keeping my cancer under control stopped working and I was told I had progression in my liver. I started another treatment funded by the NHS in March, however following a further scan ten weeks later, I was again informed I had had progression in my liver. My liver function began to deteriorate which again meant the treatment was not working. Following this I commenced oral chemotherapy to try to re-stabilise the cancer, I am currently awaiting an update regarding these results.
To say the last eight months have not been both terrifying and devastating would be a lie. However, I still have options both funded and non-funded and for that I am truly grateful. I continue to research treatments both here and abroad and whilst SIRT remains an option, because of the risks associated with it I continue to research the most non-invasive treatments I can. There is a new drug I can access following my current treatment however this will cost £3,000 a month to fund.
To keep my options open and because of the research I have done we have increased the original target and need to continue to fundraise to allow me to access drugs and treatments which are not funded by the NHS and/or are not available in this country. I therefore appreciate and am truly thankful for your continued support - whether this is by supporting me with fundraising or by holding fundraising events. Any funds raised but not required will be donated to Secondary First, a charity which specifically funds research in to Secondary Breast Cancer (how it spreads, why it spreads and what can be done to prevent this).
Since the previous update in July 2017-
1) Thank you to my friend Carol for raising money through providing complimentary treatments for the day outside of her day job as a beauty therapist.
2) Thank you to the 60 plus people who attended and took part in the Salford 10k with me during September 2017, many of whom were colleagues from Salford Children’s Services – organised and led by my friend, Colin Cooper. Thank you to UKFAST for providing me with an advertising and awareness raising stand.
3) From my Scottish friends who raised over £2000: Thank you so much to Lindsay Ness in Kinglassie who set up a Facebook fundraiser. A huge thank you to Jeanette at Rothesay House Café in Glenrothes for creating the lovely Easter Hamper and the raffle. Thank you to Hazell Ness for her hard work in arranging, filling and running a pop up shop in Fife for two weeks in April and to the helpers, Alison Morrison, Louise Westmorland, Lianne and Lindsay Ness, Leisa Metcalfe, Suzanne McGuinness and Ashley Dee. To everyone who donated to the shop – THANK YOU! Thank you so very much to Kats Mission for their generous £200 donation!
4) Thank you to all those who took part in the Manchester 'Born Survivor' 2018 obstacle course in May 18, group involvement again organised by my friend Colin Cooper and supported by a number of people involved with Team Oldham Seals.
5) Thank you to my friend Michelle Formosa for completing the Pretty Muddy in June 2018.
There are many more fundraising events to come from Aberdeen to Manchester – updates to follow soon! This will include joint fundraising with one of my very close friends, Caroline Watts, who was also recently again diagnosed with breast cancer.
SBC Awareness and Patient Advocacy
Over the past year two years I have continued to raise awareness of Secondary Breast Cancer. I have continued to be involved with Breast Cancer Care and their ‘Secondary not Second Rate’ Campaign.
In October 2017, I attended the Conservative Party Conference as a Patient Advocate for Breast Cancer Care in order to speak to politicians about the inadequacies around the awareness of secondary breast cancer when compared with primary, specifically relating to inadequate data collection. This is crucial to enable and inform adequate treatment, care and support for those living with secondary breast cancer. The current data figures of 36,000 do not appear to have improved in recent years and the current figures therefore are unlikely to be truly reflective of the number of people living with SBC in the UK.
In October 2017, I attended the Houses of Parliament as a patient representative for Breast Cancer Care at the launch of the recommendations from Secondary Not Second Rate – the Case for Change Report.
In February 2018 I again attended the Houses of Parliament and gave a speech to support the findings and APPG launch of the Breast Cancer Now report relating to inadequacies and postcode lottery of care, treatment and support across the UK.. I spoke again of the inadequacies of data collection, awareness raising and support and care for those living with secondary breast cancer. https://www.facebook.com/100002426714202/posts/1637325173025024/
During June 2018 I met with MP Craig Tracey at Westminster to discuss the issues which require additional support and awareness raising such as data collection, changing the language around SBC and much needed crucial support networks.
I have recently become involved with METUP UK which aims to raise awareness and bring global SBC learning and research to the UK.
I will continue to support Breast Cancer Care by being a member of the Secondary Breast Cancer panel as well as the Breast Cancer Clinical Expert Group (CEG) which is a patient advisory group for primary and secondary breast cancer.
Apart from staying alive as long as possible whilst living well, my other main aim is to educate and campaign for awareness of SBC, support for those with SBC and prevent, as much as is in my power, ANYONE ever feeling as isolated, alone and unsupported as I did during the first 10 months of my diagnosis.
I am thankful to have had two wonderful years to spend with my husband, family, friends and cocker spaniel Murphy, I know not everyone in my position is as fortunate and I appreciate every minute of every day.
October is Breast Cancer Awareness month. Only one day in 31 days is dedicated to raising awareness of Secondary Breast Cancer and because I think this is inadequate as SBC deserves as much awareness as primary breast Cancer, I will be running 10k a day for 31 days, part of this in England, part of this in Scotland and part of this in Majorca. People who want to join me to support me are welcome.
A massive THANK YOU to you all!
With love, Jo and Martin xxx
Last month from the 22nd-28th July, my one in a million superstar of a brother -Andrew Bailey -walked a phenomenal 211.50 miles/454,846 steps to raise funds towards my treatment and raise awareness of Secondary Breast Cancer.
With the support of family and friends, including some who walked with Andrew a phenomenal £3,065.00 in total was raised!!!!!! A massive thank you to all of you who sponsored Andy and friends Xx
Secondary Breast Cancer is the type of cancer which is incurable, it spreads from the breast to places including the bones, liver, lungs and brain and those who have Secondary Breast Cancer will die from it. The options to control secondary cancer and prolong life are limited and there is also a lack of funding not only relating to research into how to prevent this but also in terms of supporting people like me to live well with it, physically, emotionally and psychologically.
In the U.K. alone 35,000 people are living with Secondary Breast Cancer but no one talks about it. It kills around 1,000 women a month, a number of whom are under 40 and yet only 5 percent of funds for breast cancer research are spent on Secondary Breast Cancer.
So thank you Andy for doing this with me and helping to raise awareness of something very important xx
SPECIAL THANKS TO-
Gemma Swindlehurst and Neil Swindlehurst for your support, having Andy to stay most of the week, ice baths (on his own)..hot chocolate, tlc....mostly from Gemma.... and apologies he broke your dryer with his walking boots. Thank you Ellie for t-shirt decoration.
Thank you to Mark Howard for the time, support and advice regarding preparation, supplement, nutrition and fitness.
Thank you to those who supported with transport including, Carolyn Sharpe, Luke Greenhalgh, Gemma Swindlehurst and Gaz Mason.
The walkers- including the wonderful -
Norman and Pam Bailey ( Pam Moore), Martin Myatt, Michelle Bailey, Bobby Gorst, Neil and Gemma Swindlehurst, Sally Sharpe, Sarah Moreland, Terri Wolstenholme, Roxie Scott, Jacquie Roskell, Nicola Clark and Chris McGann. With support also from Lucy Sharpe, Zak, Luke, Eva and Derek Greenhalge, Danny Joleys, Ian Bailey, Evette Bailey and Thomas. ....... and the totally amazing, could not live without Murphy Myatt.
Thank you to Faresh Jowharsha for starting the wager which resulted in Andrew having to wear a Liverpool football top...whilst I'm Manchester United and Rangers...... it was very amusing...... x
Thank you Ian Bailey for the customised t-shirts.
Thank you Gemma Swindlehurst for the fun we had during our 20 mile part of the walk.... I feel like I know you better now than some of family!
A great effort from Andy and all his guest walkers.........Jo will be joining Andy on Friday for the final leg!!!!!
Keep pushing on mate.
Love Jo & Martin XXX
Hi Jo Grace wants to sponsor me and said You are really Nice XXXX
Hi Jo, I just donated £5 for Clare from work, but the comment isn't showing. Clare sponsored me for the 10k.
£10 put through in my name for cash donated by a group canoeing the Caledonian canal and back in aid of breast cancer, they heard the story and gave some cash. :)
Hi Jo & Martin, just to let you know that the 3 donations against my name tonight are all sponsorship for the SPFL bike ride and are from: £100 Henretty Family from St Andrews, £30 from Mary & Alan Scott from St Andrews and £65 from the Blackfriars GP Practice and St Andrews District Nurses. thanks to all for their kind donations
Graham sid did the technical issues involve alcohol at all Well done to you all. Xxx
Well Done all of you great to see Jo there keep going our thoughts & prayers are with you both. xx
Never give up hope keep on fighting x we are thinking of you x love Jim, Tracy and girls x
Dear Auntie Jo Jo. We asked Mummy to put in £5 each from our piggy Banks Good luck and we love you xx