2017 – it’s been a busy year…

I was disappointed in another charity who seems to think There is no i in TEAM

METUPUK wrote to all MPs who are Breast Cancer Ambassadors to get them to overturn the decision not to fund Kadcyla and to take a look at the process of drug approval – FYI to date we haven’t had ANY reply via email or letter and the email was sent to 216 people on their list – disappointing.  I saw my own local MP at the Maggies opening as she advised that they were all busy with the party campaign and she would get back to me. Thankfully though Kadcyla WAS approved so that was a huge relief for secondary breast cancer patients A plea to the breast cancer Ambassadors re Kadcyla & other drugs

I also spoke at a conference at the Patterson Institute which had a catastrophic fire in April and I saw this fire first hand after needing to go to the Christie for bloods The Patterson Institute Drug Discovery Unit Visit

I spoke at the Pink Ribbon conference Pink Ribbon Breast Cancer Drugs Funding & Trials – London

And this was the update up to this month The gift that keeps on giving

The additional sternum surgery Grabbing life with both hands

Sternum – the surgery back in May was a success and it’s much better as I don’t feel the pressure and feeling sick all the time but I still have lots of tightness in my neck area and feel its stopping me expanding my chest so maybe this is why I can’t run like I use to.  Need answers to some questions in 2018.

I spoke at a CRUK research conference at the Manchester Cancer Research Centre with researchers, clinician and Sir Harpel Kumar CEO of CRUK.

I blogged about the opening of Maggies Oldham as I am on the fundraising team Lucy and Maggie’s

Then the end of June was Glastonbury 2017 which was an amazing opportunity and experience with my family and one of the hottest on record!! NO MUD! (Lots of dust lol!) and a splash of some great music…

The month started with our fund raising walk up Snowden and the day after our children completed their 1st Triathlon again fund raising.

I went to see James in concert with one of my best friends Josie.

I was asked by CRUK to start their Heaton Park charity run off but sadly had to decline as it was the Manchester to Blackpool 62 mile charity bike ride that morning and I was taking part!

I traveled to Thailand alone but met with 16 others for my best friends 50th belated birthday – Julia – and I had a week of sun, fun and laughter with my bestie and 2 other friends of hers and extended families. It was amazing and we are hoping to try to do something every year, my health depending.

We were holidaying in Murcia yet again with my little family and met some friends over there, some from Diggle, some who live there who we had met 2 years ago.

ESMO17 happened and I still haven’t finished my blog about the event and being lost in Madrid… I will get this finished for the New Year!

It was Breast Cancer Awareness Month and we did the #BreastCancerRealityCheck  4 of us 2 from USA Wendy Dennis and Annie Dennison and 2 from UK Julia Bradford and myself started this last year to change how pink October really is – its not pink, and it’s not fluffy…  Read the blog here>>>Another One with the Cancer

After last years great statistics of reaching 200,000 people with this campaign we had hopes of reaching a few more.  It exceeded our wildest dreams with a huge social reach of just over 10 MILLION people!  How amazing is that?  Hope you are able to join the campaign this year and make it another with social media exceeding our expectations.

I attended the Conservative party conference on the Breast Cancer Care exhibitor stand and was involved in helping them create a better exhibition about Secondary Breast Cancer as two humps in the road (showing the ups and downs of the disease) wasn’t really appropriate… bonus was I met a new friend Jo who is also hopefully going to do some advocacy work with METUPUK.

I advocated for better information in the blog Secondary breast cancer infographic #SBCinfographic

I also showed how advocacy helps with data and statistic and how to push issues forward to get them addressed in If you want something done, well do it yourself…

I went to Paris with Just Treatment for a meeting with other people from France, Spain, Italy and USA about drug pricing and the differences in each country and what we can do about it.

ABC4 – Advanced Breast Cancer 4 in Portugal (another blog to follow in the new year!) was and interesting conference and again met many lovely friends.  Sadly my lovely friend and founder of METUPorg in the USA Beth Caldwell should have been attending this and we had all talked of sharing a house together.  She died on the 2nd November 2017 whilst we were there.  I still can’t believe this has happened.  I’m heartbroken for her husband J and their two young children and her family and friends.  It just makes me more determined to make a difference for secondary breast cancer patients.  Some people retreat from everything when people die – I feel like I do the complete opposite and I grow even more with a voice and with power and more resolve than before.  We need more patients to advocate and campaign.  We need resilience.  We need to stop these deaths.

Let’s hope we don’t have a messy situation in 2018 like I found in November

Apologies arrived from the above blog in October

The new MCRC Director Professor Rob Bristow called a “town hall meeting” for breast cancer researchers, scientists, clinicians and patients and asked what we all wanted to focus on.  Looking forward to hearing the next steps to push this forward.

I was invited to participate in WOW – World of Women festival in Bradford – in a group discussion all about breasts.

I attended Britain Against Cancer and was on the “expert panel” to discuss issues around the progress of the England Cancer Strategy: Delivering outcomes by 2020? – it looks doubtful… too many reports, not enough action.

Sinus – Over 10 months now I’ve had a constant problem which started with a virus and what seemed like an infection.  3 lots of antibiotics and now waiting for the results of a sinus MRI I eventually had mid December.

A great finish to the year was a 3 day trip to Dublin with my husbands company for Christmas.  We arrived on the Friday night and met up with 3 twitter friends, Marie Ennis O’Connor, Dr Robert O’Connor (not related!) and Eileen O’Sullivan – we had a lovely night chatting and then Jeff and myself spent the next two days sightseeing and a lovely meal on the Saturday night with his colleagues.

ABCD – I have applied to be a CIC – Community Interest Company – so to open up the ability to apply for grants.  I had applied for a huge 4 year £150,000 grant earlier this year for the #abcdretreat which unfortunately I didn’t receive.

 

So that was the end to what was a very, very busy year!

Sadly my Auntie died in November – she had dementia but after being admitted to hosptial with an infection and sepsis she never really recovered and her dementia sadly progressed quickly and died not long after. But in context and even though very upsetting, at age 86 we were thankful she had a full and great life.  I wrote and read her euology at the funeral and I hope I did her proud.

Inbetween all this (throw in family life and 2 children) I’ve had various meetings and events with patient involvement, steering groups, advocacy, campaigning and activism.  Hoping to step this up in 2018 with the aid of METUPUK and the wonderful people helping with this group.  We have only worked together for a couple of months but we are addressing the objectives and are very focused.

I have also continued to have treatment for secondary breast cancer.  I’ve just finished number 65 treatment which is every 3 weeks and I’ve been doing this for nearly 4 years.   I have a good quality of life and whilst I can, I will continue to advocate for secondary breast cancer patients.

What do I want from 2018? To still be here for one…

I’m going to keep exercising and will try to get out every day, hoping to step up the running more in 2018.  I’m hoping NOT to have chemo in 2018, and I wish for better drugs for SBC, better research for SBC and better survival and better quality of life for secondary patients.

I can’t bear to see another death from this awful disease.