Prior to Melanoma I had never even heard of “ECCO”…but then in fairness,I had never heard of Melanoma!
ECCO is a huge conference for European Oncologists & those connected to the field….when I say huge I mean roughly 20,000 people attend. And these are not just “people”…they are the experts, decision makers, and influencers. So understandably I was pretty humbled when it was suggested that I applied to attend & even more so when not only was the permission slip given but I was awarded a grant as a patient advocate!
1000 Euros for travel & accommodation….amazing I thought…but hang on a second…the flights are roughly 350 of that. With the event starting on the Friday & finishing on the Tuesday, even at the discounted conference rate at their selected hotel (130 per night) that grant was looking a bit stretched….
Given I was attending with my colleagues & friends from the Melanoma Patient Network Europe we decided to share our grants & make life simpler….Air B&B….which was just perfect (if you take the lack of mirror in the apartment out of the equation).
We would navigate the delights of getting to & from Messe Platz conference centre to our base, which was almost immediately next to the amazing HundertwasserHaus, via the tram or Ubahn. Thankfully one of the ladies sharing with me Gilliosa had been to Vienna before & took on the role of mother hen…guiding us…almost always perfectly in the right direction!
I have been to conferences before…but never anything like this…not at this scale & certainly nothing quite so advanced….and by advanced what I mean is that apart from a few faux pas, I pretty much needed to leave the “blonde ditz” back at home!
I am not medically trained….since diagnosis I have learnt a fair amount about Melanoma…but not the science, nothing more than the fundamentals & if I am honest I was pretty darn scared before setting off….I thought I would be out of my depth…and I thought that as a patient nobody would really want me there anyway…what do I currently bring to the table?
Granted I have a rather large project coming up that I am “about” to announce, & yes I write a blog, & yes there were those journalists that the wanted to talk to me. In a *blush* delightful twist the European School of Oncology suggested that they talk to me. They wanted to get a patient perspective on how the media, patients and oncologists can work together to improve patient care….so that was exiting….but despite that I felt small fry.
& I am….But I was really surprised with how much I picked up…..& I will tell you about some of the key things that I have taken home from the conference soon. Perhaps even tomorrow.
But before I dazzle you with science and my astounding (scoff) newfound knowledge of biomarkers, immunotherapy, pathway inhibitors etc… I shall share a few giggles, just so that you can comprehend that not only is my Braf+ mutation genetically & intrinsically “me”…likewise clutz, ditz & numpty, which may not be scientific terminology, are sadly *sigh* also quite ingrained into my persona….
I packed sensibly…I thought…I squeezed a selection of non-crease day dresses into my cabin sized suitcase along with the necessary hair straighteners (can’t be looking like a frizzball in front of all these #cancer experts & idols!)
I packed so well in fact, that I had decided early on that I would take just the 2 pairs of footwear…one that I would wear to arrive in & the other that could go in the cabin bag. With one being black & the other beige I would have completely covered my requirement’s & felt smug.
Ah…..but the thing I didn’t allow for was…practicality. #numpty
The conference venue itself is HUGE – the best part of ½ mile end to end….and in true logic (as all event planners are renowned for) there can be 1 seminar in Hall A from 8-8.45am and another in Hall C from 9 – 10.30am. You have 15 minutes to run from A to C, (and next door to each other they are not) in order to get a decent seat somewhere near the front so that not only can you hear the speaker, but you can also get a photo of the slides they are showing.
*Sidetrack – Taking photos and notes simultaneously is invaluable for a conference newbie and non-medically trained person like me. I can go back through the slides, google words & phrases I need to clarify & hopefully, in time, get a better & deeper understanding of my disease.
Then there is the walking to the tram in the morning before the day starts…the standing around…and the walking in the evening.
We walked in the evening to get the opportunity to see some of Vienna – we were leaving the conference venue at about 7pm most evenings…hungry…but there aren’t really any places to eat nearby…so it is back on the underground (walking/stairs) and into the town centre to find non-pricey restaurants.
*Sidetrack – Restaurants can’t cost too much because our “grants” don’t cover food & us advocates are doing this as volunteers…some amongst our group are even having to pay enourmous medical bills in their own countries = money doesn’t grow on trees.
Vienna is stunning….and whilst I need to go back at some point so that I can see more of it in the daytime, we saw a considerable amount of the city…on foot….with me in my “practically packed” footwear….5 inch heels. #ditz
On Saturday night the museums in Vienna were free for delegates to visit…until 10pm. We had been fortunate enough to leave the conference centre at 6.30pm so had time to get food first…please note I was virtually torturing my friend Violetta with the prospect of a museum visit because like me, she was in heels & would quite happily have missed the museums in preference of sleep.
But I was adamant…it’s a gift…we should take advantage!
So..1 hours walking to find a suitable restaurant & then somehow it was 9pm by the time we left…and we had to zoom by tram & Ubahn to the Belvedere, to at the very least pop in & see “The Kiss”…but we arrived at 9.40…..& they didn’t let us in….we had taken too long walking (in heels) and had to satisfy ourselves with photos of the amazing building from the outside! #numpty
Feet hurting was a theme….so was tiredness & aches but one of the greatest things for me was missing the Little People…5 days is a long time & I was suffering major withdrawal symptoms….It didn’t matter how tired I was despite getting back home at 1.30am on Wednesday morning…I wanted to be the one to wake up & take them to school.
Whilst I looked somewhat zombie like I was over the moon to see them….my head was fried & I wasn’t concentrating….I leant down to kiss them right by the school doorway…BOOM!!!
The door was swung open by the enthusiastic headmaster….BOOM…straight into the side of my head *stars & spinning*….#ditz
It’s been an honour to attend ECCO…I have learnt a few practical lessons about attending huge conferences…and an enourmous amount about #Melanoma & #Cancer in general.
I’ll catch up with sleep…..work & the Little people & then I’ll start to fill you in.