107. Whirlwinds & Values

Anyone that follows my posts on Facebook or Twitter will no doubt already know that I have spent the last 3 days in Brussels.

I was there for the annual MPNE (Melanoma Patient Network Europe) meeting – a coming together of patient advocates from all over the EU. It isn’t the first time I have met with this lot – although it was really lovely and quite encouraging that just under 50% of the delegates there were new – joining our active & enthusiastic team!

That statement in itself might sound ridiculous….active (??? how when 40% of the patients in our group are stage 4!) and enthusiastic….(??? really you remember it is Melanoma we are talking about – the disease that apparently if you ask anyone training to be doctor to name the diseases they would never want to have & Melanoma is in the top 3!)

The amount of time that many patients stay living as stage 4 is increasing. But the toxic burden of their treatments is too. Melanoma incidences are rising globally & scarily the percentage of these that relate to late stage diagnosis, rather than the “safe zone”, which is Insitu or stage 1 is higher too. We clearly still have a problem. So what right do we have to be enthusiastic?

I think partly there is hope – the number of new drug options that are there.

There is inspiration – shown to us all from advocates who are making a difference & changing problem issues in their own countries.

And there is this overwhelming urge to live. To live well. To laugh in the face of adversity because if everything else “fall’s to shit” as long as we can laugh rather than cry we haven’t been broken by the monster that is Melanoma.

We laughed because we were there to address the fundamental topic of value. What it means to us. How to measure it. How to improve it. The laughter would come from the fact that there just simply isn’t a right or wrong answer. As you can see from this slide, value means different things to different patients. Your answers to the question of what matters most would depend upon whether you had recently had surgery, or treatment, or a scan, or were about to. So many factors. From a surveying perspective, there are too many algorithms.

We looked at Value from everyone’s perspective. There were talks from patients, regulators (the EMA), from Pharma, from physicians, from advocates…it seems that everyone has a reason for why they make the choices & decisions that they make & even more frustratingly…they aren’t all wrong.

So the challenge is to collaborate & find common ground – with enough data – that is good data (without being too onerous to obtain), to agree on the priorities (insert chuckle), and then take action to bring about improvement & change.

Oh its so easy isn’t it!

And yet: in the UK in 2014 there were 15,419 new cases of Melanoma & the incidence of Melanoma is rising faster than any other cancer in the UK.

We are not listening to advice about protecting our skin, we are not seeking or receiving diagnosis quickly enough, our pathway through care & treatment is hampered with inefficiency & sadly for a modern western country, beaurocracy & monetary problems.

It’s a pickle & not one of the eating kind. And so we actually NEED to laugh.

We laughed at me for setting my alarm to the wrong timezone & therefore waking up an hour earlier for breakfast than I needed to…and actually not realising until I had rushed through breakfast!

We laughed at the fantastic game of Melanoma Kahoot we played. We were so proud that our knowledge level was good enough across the entire network that it became really, very competitive….and although there was laughter at the fact we called our country team Brexit, it was mixed with shame. Sadly Brexit is a choice that our government & various people in the UK have made that can & will only have a negative impact upon Melanoma care & treatment in the UK.

We laughed at the fact that we lugged our suitcases up a flight of stairs because it didn’t look as though the escalator was working…only to watch a man in slow motion glide past us…it turns out we should have checked that it was movement activated!

We laughed at catching up with the wonderful friends we have met & made through this network. And the fact we are all returning home now utterly exhausted after a weekend of intense learning & talking – how can something that provides us with such hope & happiness make us so desperate to immerse ourselves even deeper into the world of Melanoma – the world that might kill us.

Like a whirlwind I flew home & straight into the arms of those I love most.

And, like a whirlwind in just over 24 hours I fly out again…this time for work. It’s unfortunate timing…but then Melanoma is unfortunate with it’s timing naturally & I shouldn’t really complain. I enjoy my work & there aren’t that many Cancer patients who are blessed enough to be in that position – I certainly wasn’t a year ago!

I’m reading a book, called When Breath becomes Air & I would highly recommend it to you. In it the author (a now deceased Cancer patient & leading Neurosurgeon) says that one of the early meanings of a patient is “one who endures hardship without complaint”

More reason to laugh…and definitely not complain!