Monday, 1 May 2017

Melanoma May and Black Awareness.

May is Melanoma Awareness month.

I probably should be super-busy 'raising awareness'- so why does it make me somehow uneasy?

Melanoma is the bane of my life. It killed the man I thought I'd grow old with and several people who had become close friends. And since then- many I got to know and appreciate have died of Melanoma, most of them young. The suffering Melanoma causes is intense, it nearly always comes unexpected- I surely didn't expect to be widowed by the age of 35- and because of its unpredictability and aggressiveness, it can kill very fast.

Melanoma has become my everyday life. I usually start my day with reading, sharing and explaining scientific Melanoma updates. And end it with answering questions on one or the other Melanoma forum. In between, I spend enormous amounts of time learning about anything related to Melanoma and anything that affects Melanoma patients. Honestly, there is no real difference between a day in May and a day not-in-May. 

Melanoma has changed me as a person. This is a hard one to explain. After I lost my husband, family and friends told me 'to get back my normal life'. Apart from the fact that 'normal' was kind of a difficult concept at the time- with my husband, I also buried our plans, our hopes, our future, so where was 'normal' supposed to come from?!- it simply didn't feel right. I had learned a lot in the previous year and now, other Melanoma patients kept asking me for help. Turning away in face of that desperation I only knew too well was simply not an option. 

And it's not about me anyway. Suffering comes in many shapes and forms. But there always seem to be people who are not willing to just surrender to their fate. People who, despite being personally affected, find the time, energy and personal resources to help others. People who helped us when we started the Melanoma Patient Network Europe- although they had no link to Melanoma whatsoever. People from very different fields and walks of life who help us today with their knowledge and expertise, without expecting anything in return. People who through their persistence and hard work make a real difference.

So Melanoma might be the bane of my life but it has also exposed me to people who today make me believe that a better future for us all is possible if we only put our backs into it. If anything, my future is brighter, not darker, than the past.  

So shouldn't I still be happy about a full month of Melanoma awareness? 

I guess my unease stems from the fact that for me, Melanoma is still deeply personal. Even after this time, it is exhausting to pull up those memories and to what purpose? Scaring is a tool of limited effectiveness in education and thankfully, most people diagnosed with an early Stage Melanoma will never go there (but suffer from an enormous psychological burden for fear of recurrence). And just listening to a dreadful story, going 'oh, that's tragic' and then going home un-changed will not change the future one little bit as

Awareness is only as good as it is followed by action, so please do go on all those Melanoma awareness marches and runs- exercise is good after all. But please don't forget to slap on that sunscreen and not only for the Melanoma awareness march- and then afterwards, the real work starts. 

From where I stand, 

We need to fix our beauty ideal. By now, most people are actually aware of the risks of too much sun exposure, let alone tanning beds. As long as we consider a tan as looking 'healthy' and 'beautiful', what do we expect?! 
SPFs in make-up do work- supposedly preventing wrinkles, not Melanoma, mind you....

Protect our kids. It's the sun burns in childhood that come with a high risk of Melanoma later in life, so e.g. making sure schools provide enough shade on playgrounds and appropriate clothing go a long way. 

Suspicious moles need to be treated with- suspicion. The ABCDE rule is widely shared but let's face it, what you pick up are the seriously bad moles- the ones you would have wanted removed long time ago. 
On our forums, we hear over and over again 'I had this mole that somehow looked funny' or 'I just didn't like the look of it'. Depending on life's lottery, the stories then go either 'my physician took it out and it turned out to be an early-stage Melanoma' or 'my physician said it was nothing for x years and now I got mets all over the place'. So I'd like to see more attention to those 'funny' moles-not suspicious by ABCDE yet, but somehow odd- anyone we can diagnose earlier has a a better chance to live.

Prevention does not save patients with advanced Melanoma. Once Melanoma has spread- and there will be always unfortunate ones among us- only drugs can save those lives. In the last few years, we have seen unprecedented progress in Melanoma therapies, turning a desperate disease with a median survival of 6- 9 months into one with real hope for long-term survival provided access to therapies. Unfortunately, our societies were ill-prepared to develop, approve and now pay for these new therapies, costing further lives.

So I'd like to see serious re-thinking how we incentivise innovation so that it delivers the therapies patients need and want and that societies can afford. Not only in May and for Melanoma however, next month there will be another desperate disease...and the months after that, too.

So, to awareness followed by action- and not only in May. 

And a future where we can say 
'Melanoma USED to be a terrible disease'. 


  1. Very powerful Betina. Going back to normal life, is simply not possible for people dealing with diseases that disables and kills us or our beloved ones. That is what people hope, but very difficult to explain them why it changes you. I have changed too, but people don't see it as it is an inner changes. Thanks for sharing your power.