In October 2017 it was the ABC4 conference and I haven’t posted my blog until now (there’s a reason behind this at the end) – this is a conference specifically for metastatic breast cancer patients.
There were over 1000 attendees and I had applied for a grant as a patient advocate. The organizers who arrange the conference – the European Society of Oncology contacted me to see if I would help to be a social moderator along with two other Oncologists Diogo Costa and Joana Ribeiro who are both Breast Cancer Oncologists living and working at two hospitals in Lisbon.
I arrived on Tuesday 2 days before the start of the conference it gave me some time to look around the city. I had never visited before and it was a beautiful city to visit with great architecture, culture with lots of places to visit and restaurants and bars.
As I arrived I dropped my bag as I could access my room until later in the afternoon. The hotel staff we’re very helpful and told me about places to see and visit and even gave me a mobile phone with an app to visit places. Used it a little bit but found using my google maps more effective for finding places and nearly cafes etc. So I changed into more comfortable clothing (and flip flops) and walked over 10 miles around the sights in the old town. I was able to find everything I wanted which was great. I arrived back late that night changed and went out for dinner on my own in a restaurant a mile or so walk away with a lovely meal but quite strange with a mint sorbet (yes cold) on top of couscous!
All the meals and transport are quite a reasonably priced. I found the taxis great when I needed to get to the conference in the morning and back at night for a 10/15 minute journey around 7 euros – compared to Madrid which seemed to be for a similar time around 25 – 30 euros! The public transport was also good and easy to use. Walking though was my preferred option when I could. One word of warning are the street are all of beautiful mosaic tiles (most with designs on them) and very uneven so flat shoes are best (would be very dangerous in the rain!) definitely no stiletto shoes as they would be a nightmare! A lot of the roads are also cobbled too and it’s quite hilly.
The next day there was a group meeting with the pharmaceutical Novartis that afternoon. The pharmas that attended the conference all seemed to have an event that afternoon so I thought I go along to see what it was all about with the chance of networking too.
Before the meeting I decided to have a wander and also go on the hop on hop off bus so booked with the hotel and then walked to the meeting point and got there just as the bus was leaving so caught it just in time. I had booked a tour and kind of knew it would go around the places I had seen the previous day because I didn’t have more time to visit the other areas that may take longer. So I basically went on a bus tour of all the places I had walked!! Oh well it did give me time to catch up on work and tweets. When it had finished I had a wander up the beautiful green area (all uphill!) who what on google looked like a small cafe and when I arrive it was like a lido! Nice to have a coffee in such a lovely area and had found it completely by chance. Coffee had I walked quickly back to the hotel, got changed and came back the same area as the hotel the Novartis meeting was held at was nearby.
I arrived, signed in and met for lunch with some other people and sat at the table with Karen from Novartis and two other ladies from The Netherlands and her partner. It was really great to chat and I found out that in the Netherlands they kiss 3 times on the cheek so protocol of kissing meeting people was getting a bit confusing – uk once, Spain and other European twice and Netherlands three times… lol!
The session first was about what metastatic breast cancer was and how it’s treated, how they find out how many people are dealing with MBC, treatments and what was available, the ABC Global Alliance and the 10 goals thy are looking to address, why resistance happens, what treatments available for patients. It then went onto organizations who have made impact and progress in their country with patient advocacy and support groups – there were people and patients advocacy groups from all over the world. I sat next to a couple of ladies from Lebanon and then to my right was Janine Guglielmino who was part of the LBBC group in USA. I knew my USA MBC friends had talked about LBBC and it turned out she knew Beth Caldwell, Kelly, April Hines (sadly April died in 2018 since I wrote this blog) and April Knowles so it was good to be able to connect that she knew twitter friends. I tweeted them our picture together to say hi from her. All in all a good meeting and I guess that Novartis are looking how to support patients in many ways, not simply providing drugs for patients but can cover many aspects with these groups.
Dinner was in the hotel and then I walked back to my hotel which was only 15 minutes away. As a woman travelling on her own I felt totally safe out and about on the streets even at night.
The next day I arrived at the conference centre early to meet Corinne the organiser and social media controller with Diogo and Joanna who were both breast cancer Oncologists living and working in Lisbon at two different hospitals. I finally met Dr Kelly Shanahanfrom the USA and METUPorg which Beth Caldwell and Jennie Grimes founded. It was an emotional hugs and lots of tears as we Both knew Beth was dying. I’m just glad she was there so we both could hold onto each other for just a short time as we understood what loosing a huge campaigner means to the community. She will leave a huge hole. It doesn’t get any easier loosing friends and I must say it enforces the message even more how we all have to work together to try to “change the narrative” as Beth has said so many many times.
My role as social media moderator was to provide messages throughout the 3 days for ESOncology social media to provide a message to followers of the #ABCLisbon and share the good work that is going on. It worked really well and between myself, Diogo and Joana I think we did a great job. I had mentioned to get the hashtag recognized with Symplur so they had done this and of course found it useful to be able to provide statistics and see who and what was going on with the impact of social media. It’s good that the hashtag can now be used for any future events.
Meeting Dees @caseofdees from the Netherlands was fab with some of her friends too. We had been following each other on twitter for a while and I attended the Madrid conference without getting to meet her so it was nice to finally meet her in person. A great advocate with primary breast cancer who strongly advocates for metastatic patients. In fact there were many primary patients who were advocates there. I think we need to work on getting more primary patients involved from the UK in these issues as we need their voices. Thank you Dees for all you do! ♥
The first slides on this day was about remission and what this means, new inhibitor drugs like the 3 CDK4/6 that 3 of the pharma are launching. Drug interactions, side effects etc. I met many advocates and people from UK, Ireland, Switzerland, Italy, Germany, Lisbon, Spain, Nigeria, USA, Egypt, Lebanon, Japan, Canada to name but a few. We have one goal – to make a difference for people with this disease. Even then I felt an issue with the UK leaving the EU. Comments made at certain points reiterated this.
In the evening I met Kelly Shannon, her husband Jeff and Amanda DeFibre another mets patient from USA and we went out from the conference to a local restaurant. It was Mexican and very nice. The sat us in the middle of the room on an elevated round table which was a boxing ring. Ironic… the “fight” language was surely not lost on me. Nice meal and company I went back to the hotel and worked, fell asleep, woke again to work and then saw the terrible news that Beth had died.
Here is her husband’s heartfelt and emotional blog memorial here >>> Cult of the perfect Motherhood
Click on the link with the Polar Bear to read her husbands memorial. Please read this heartbreaking post.
Even though expected it is still so hard to loose friends especially when you are so far away from your family. She had sent a message a few day previously to her “trees” and I will treasure her words and love – she loved us all for what we were doing to help. It’s unbelievable how quick this disease at late stage takes over. We’d gone from thinking it would be weeks to days. I just hope she was painfree and had some bourbon and bacon #eatbacon4beth #bourbon4beth #baconandbourbon4beth were just a few of the hashtags that she started us off on so you can see some of the food and drink tributes aswell as so many others under #ForBeth
I cannot begin to imagine how hard this is for J and their two beautiful children. All I can say is that her legacy will live on in everything we do with METUPorg and METUPUKorg and we will keep pushing forward with the campaigning and advocacy for metastatic patients – I’m so sad that she was one of the 113 that die every day in the USA. ?♥
Saturday was a 1/2 day closure of the conference and it was a day when the Oncologists and experts got together to vote and change details on articles written for the standards of care around metastatic breast cancer in Europe. So a large panel of people were at the front on the stage and it was in count down style clock ticking that they voted on wording and including better guidelines. This was very medically orientated so since I was getting a headache I decided to have a wander out of the auditorium and bumped into Rhona Nally a 13 year metastatic breast cancer patient from Ireland. I had seen her and briefly met her after her talk at Novartis and she was feeling the same way so we left for a walk on the river front. We had a good 2 mile walk and chat about various things. She’s a lovely person and had an advocacy group part of the Irish Cancer Society. She’s also an avid exerciser and walker and participates in dragon boat racing. We had a lovey walk and talk on around many issues to do with cancer and being an advocate.
Walk over and back to a patient advocacy conclusion and then it was lunch time. When the lunch time session had finished it was the start of the first ABC Global Alliance meeting. As a supporter I proudly attended for abcdiagnosis and METUPUK The Alliance has been created to support global issues to be addressed and there are 10 goals for the next 10 years. We as a group of around 80 people supporters and members prioritizing which of the 10 Goals they thought should be addressed first and votes decided on:-
1. Doubling median overall survival.
2. Improve quality of life for ABC patients in clinical practice. (Joint 2nd)
2. Improve availability of epidemiology and outcomes data for ABC.
3. Increase availability and access to multidisciplinary care, including palliative, supportive, and psychological assistance for patients, families, and caregivers to ensure patients are receiving the best treatment experience.
This is great as two of the three issues were included that I had strongly wanted to be addressed as a priority.
There was information about collection of data and a new initiative which 40 organizations over 30 countries were involved in. This is great to utilize the global cancer community with patient data and information.
There is a patient registry which patients can enter their own data. And for this to be linked to clinical trials this is due to be launched in November this year and then beta testing done early next year. It will then be rolled out across other countries in the EU.
A group of us went for a meal that night which was nice.
I wasn’t able to attend the next day’s information but I believe they discussed the next process of the Global Alliance and how to move the issues forward. Its funny as one of the UK Breast Cancer charities attended this but they had little input or mention in any tweets or any information.
On my walk home I decided to call into a roof top bar I had googled. It was a fitting end to 5 days and after loosing Beth on the 2nd November 2017, I could finally raise my glass of bourbon and honor her memory. Such a shame she didn’t make the conference like we had all planned we were going to have a big house with us all together and she wanted to get J her huband to cook for us all… but even though it didn’t happen, I know that Beth was with me every day and there wasn’t a day that she wasn’t thought about.
The next day the taxi picked me up and I returned to my family and an emotional but lovely welcome back.
It was what Beth should have been doing. I will miss her MF tweets dearly…
Here is an extract from one of her blogs about us all being trees…
“The only thing that brings me any sense of meaning these days is to think of these fallen trees as nurse logs. Their memories, their lives, their children, their passions, their faces, their senses of humor, their wisdom, their spirits, their beautiful beautiful beautiful spirits are nurturing us, feeding us, giving us strength to go on, to demand change, to bring research to our friends, to fight against death death death so much death. Their falling leaves a hole in the forest canopy, but their souls are bringing new life to our movement and nutrients to keep us growing.
“And someday this forest will cover the world.”
This is written is memory of my friend and co-founder of METUP Beth Caldwell @cultoftheperfectmoms who died on 2nd November 2017.
This is the Fred Hutch cancer centre blog about Beth Caldwell’s Impact on metastatic breast cancer
If you wish to donate to the fund for supporting clinical research for metastatic breast cancer patients then please click on the link below as donations are still being added. Beth believed in Dr Kevin Cheung and his research for metastatic breast cancer.