Back in March this year I attended a Melanoma Networking conference in Brussels. It was a first for me, it was emotional, educational and most of all inspiring. It was that event that has driven my passion since – my commitment to, and enthusiasm for change.
I joined a team of people called Advocates.
Sounds fancy…but actually if you break it down to its definition an advocate in simply a person that uses their voice – spoken or written to promote and support a cause. In this case the cause is Melanoma. Improving chances of survival by raising awareness, working to change ineffective systems and improving the outcomes by sharing information and scientific – proven – research.
One thing that came out of Brussels was a need to provide actual help & support to the advocates that were looking to do more than just Talk & Write……..projects…activities….events. I applied to attend the event in Sweden with a fair bit of trepidation if I am honest…..3 days away from The Little People….I know from my professional hat about project management – but it was the people that I knew / hoped that would be there that I actually wanted to connect with. Would I get anything from it other than just a good feeling? How would it actually help me to organise a project that is probably bigger than anything I have organised before? (No I am not giving you any more details yet you nosey people!)
So I applied….was accepted….and then I flew.
Figuratively….the plane flew…I sat shrouded in a mist of the overload of perfume samples I had applied to every inch of skin whilst passing 1 hour in duty free!
My confused & headily fragrant self, arrived, along with other delegates…not a word of Swedish between us…the sombre looking Taxi driver messed up the signage so a good 15 minutes passed in the Airport foyer with that “oh crap” gut wrench until Giovanni an Italian delegate found the Taxi driver, corrected his signage issue & resolved the problem all with very Italian hand gesturing!
Our weekend began with utter inspiration from Jan Greißler director of Eupati, and in this instance more importantly, a patient of a rare Cancer – Chronic myeloid leukemia – a cancer with great similarities to Melanoma – no cure, limited drug options, a lottery of care and very little hope. Jan campaigned & still does, and he led a movement of change. The battle is not won, but an ongoing fight – but the prognosis for a CML patient is entirely different now than it was 5 years ago because of the projects he has been involved with.
We had all come along with our own “projects” in mind…so we needed guidance on what made a project viable and how to make it a success, how to obtain funding in the extremely complicated world of Melanoma advocacy. If you are lucky enough to obtain funding of any kind for a project you don’t just have responsibility to the sponsor to not waste that money…there is an ethical and moral pressure not to screw up. The funds are not limitless and if money is diverted to unsuccessful projects time & again that pot gets smaller…the willingness to invest gets dented and the impression of a Melanoma Advocate gets labelled.
The mantle of responsibility to show us best practise and tricks with managing projects successfully fell to Bob Philips. He has years of experience with Blue chip companies and has seen projects of all sizes and types succeed and unfortunately fail…. we had a week’s programme condensed into 1 ½ days and he showed us our failings.
Brutally!
We were “tricked” into a theoretical project and step by step we were broken….and as we discovered all of the things we would have done wrong we learnt how we could do them right…and individually we all sat there applying the lessons to our own projects. It was intense. It was hysterically funny and amazingly exhausting given we spent most of the time sitting on our bottoms.
I didn’t think I would get anything direct from that element of the weekend….I knew I wanted to meet Bob Philips and get time to talk to him about my idea (which I did)…I wanted to know about how to apply for funding (tick)…I wanted to talk to a specific people attending who had done similar projects…for hints (tick)……but arrogantly I thought I knew all I needed to know about project management. I thought it was all common sense. I gained so much more…..I actually think I can do this now!
The reason the 26 of us from 14 countries were brought together was to share our ideas, provide guidance and support, to share tools, contacts, systems and procedures. It was quite an honour to be selected. I had so much wonderful feedback about this blog which was truly fantastic….when the day finally came to an end each night I would go back to my room and dance a happy dance before I called home. I don’t think of what I do as being “great”…it is what I am doing because I need to…a fire in my soul I can’t and won’t put out….but it felt really very special to have that encouragement from those people who like me are working towards the same goal.
Raising voices loud & organising events across Europe is all very well & good – yet these projects need purpose, definition and continuity in order to optimise their effectiveness. Melanoma isn’t going to be cured in the next 5 years…..but it is going to be become less rare….and it is going to become a significant public issue. The projects we start now can lead the way towards making the road for future patients less bumpy….less like rollercoaster rides!
I would call home…and the conversation on the phone was very stilted. It was a struggle…not because they didn’t want to hear….but because the Wi-fi signal was so intermittent! We resorted to saying “over” after we had spoken in order to let the other end know they could speak….The Little People thought it was hysterical!
The Wi-Fi wasn’t dreadful because we were in the back of beyond…the hotel and conference complex was stunning and enormous so the issue was more to do with the range. It didn’t snow which I was somewhat disappointed about…but I managed to walk to the lake…which quite frankly was a necessity…..not just to obtain fresh air and brain clearance for sanity…but because the food was so fantastic…so delicious….so bountiful that I could feel my waistline expanding despite trying to choose fruit over biscuits or huge slabs of chocolate torte at each coffee break.
The food was memorable…a true highlight…but it was, in my twisted mind “free”.
You see I have my 4th Colonoscopy tomorrow.
So today I am taking a plethora of toxic system cleansing drugs and the wonderful food is fast becoming a distant memory!
Thankfully the memory of this weekend – and the benefits I take from it are indelible. I feel blessed to have gone, to have had the opportunity. I am fortunate to have such a network around me…a group of amazing and unique advocates who are all as passionate and determined to fight Melanoma as I am!