Punctuation is an art it seems. It can change the whole meaning and concept of the piece you are trying to explain. I’ll give you an example
“A woman, without her man, is nothing.”
“A woman: without her, man is nothing.”
If you get it wrong the whole meaning of what’s being said can change. If you bring together, over 100 participants, from 20 different countries, it could be a recipe for huge misunderstanding, or equally an opportunity for great learning.
Luckily, for european melanoma patients, we have an organisation called MPNE that guides all us disparate, and desperate, together, once a year for an amazing conference, in Brussels. Where, despite our differences we manage to come together in unity to learn from each other. There has been a lot of talk of divisions within europe, but I witnessed friendship, sharing, bonding, exchange of ideas, information that I have rarely witnessed elsewhere as a patient.
This was my third year to attend. Pretty remarkable considering I am a stage 4 patient. I’m also now a member of the Melanoma Patient Network Europe (MPNE) faculty, because of this I had some extra duties this year. I was and always will be happy, proud to help.
On friday, we began with a quickstart session for newcomers. It can be daunting to arrive at your first conference and not know how the structure operates. This session gives the new attendees an opportunity to find their feet, and understand just what patient advocacy is. This year Kari Anne from Norway, who is at presently studying the Eupati education program, and Fredrik from Sweden were the co-chairs of the session.
After this followed a session called Einstein Melanoma. This was an explanatory session where Luc from Melanoompunt Belgium, directed some of the most commonly asked questions, about melanoma biology, to Bettina Ryll PHD founder of MPNE. Bettina explained differences in disease staging, and in mutational differences along with other topics which were all expanded on further in some following sessions, that afternoon.
For our friends in the Ocular Melanoma community, there was a complete program of sessions all weekend that specifically dealt with the issues arising from this rare but difficult to treat disease, but I’m glad to say they were intermingling with the main proceedings as well. They are so passionate about finding solutions to these treatment problems, there is always something interesting to learn from hanging out with them.
There was plenty to choose from once the parallel sessions started. There were discussions on liquid biopsies: What promise they hold for melanoma patients, with Thomas Schlange, of CANCERID. An introduction, to the 8th edition of the AJCC: The new melanoma staging system. Which has been confusing medics and patients since it’s introduction.
After coffee, the Know Your Drugs: A crash course or re-fresher on how we get our drugs, what they are, how they work, and for whom they work. Also on offer was Pharmacogenomics with Tomas Kirchoff of the Perlmutter Cancer Centre New York, who had travelled especially to attend our conference, I would love to have attended, but at this point I was helping to run the first of two sessions, I had scheduled that evening.
It was aptly called: Its Ok, nobody else here knows what a P-value is either and was hosted by Darren Daly of University College Cork a statistician by trade, for his sins. Somehow he manages to related stats in a very user-friendly way, and it was to most of our surprise, by the end we did know what a P-value is.
We had a quick turnaround for the next session, and the room began to fill up fast. I was also co-chairing this next session called Coping with Melanoma with Luc Vautmans, I met Luc at the very first MPNE conference I attended in 2016, and I was glad I had someone I know well, and have a good rapport with, beside me for what could have been a tricky item to cover. We knew, perhaps this session would, stir up, quiet a bit of emotion. We invited the participants to write down the feelings they had regarding their diagnosis we made a wall of post-its that varied in outlooks intensely. The patients ranged in stage from 1-4 and we also had family members present. We started with the understanding that your stage was irrelevant when it came to coping, if a patient has anxiety it is the same physical & mental reactions it creates. We each chose some of the reactions to discuss, and then threw it open to the participants, to see if it was a common, but also to discuss some of the ways we find to cope with these, on a daily basis.
The emotions logged ranged from anger, frustration, fear, hurt, disappointment, withdrawal, destructive behaviour to ones of genuine hope, love, gratitude, calmness, and looking forward. Some of the coping mechanisms patients, found helpful, were, writing a diary/ blog, therapy, talking openly, humour, making time for things you enjoy, and giving back to others or connecting on patient forums.
We all felt a little lighter mentally afterwards, we had lovely feedback on the session. How it had helped, just to write down and speak out loud in a safe environment what we were all feeling. Finding ways to express feelings, whilst undergoing or moving on from treatment is vitally important for mental wellbeing. I was especially moved by the openness Luc displayed as he said “nobody expects a guy like him to struggle”, I think it really struck a chord with the men in the room, that it’s ok to ask for help, you don’t always have to be the so-called brave warrior, this is cancer after all, and it’s a big deal, to deal with.
I spoke about my own struggles with anxiety. How I didn’t like being offered a tablet that was for depression to “fix it,” when I didn’t feel depressed, I felt anxious. There is a distinct difference. I knew there had to be other ways, to deal with it. I am still working on it, I work on it everyday, because it will remain an ongoing problem for me, however well I might look like I’m coping, on the outside, underneath, at times, it can be a very different story.
We also discussed the impact on family, and how difficult it can be to live with someone, living with melanoma. Their lives have changed, and I would be the first to admit, there are many times, I’d find it difficult, to live with someone like me, since I got cancer.
Another point was families lives are carrying on, whilst we often felt detached from it, in our own bubble. Spending time together as a group of patients can be very therapeutic, there is an instant connection, you don’t have to explain, they know and get what it’s like for you. This can be frustrating for patients when socialising or spending time with those outside the bubble. Again the perception, you look Ok, therefore, you must be Ok, is often just an illusion. The conversation about the workshop continued long after it ended. It was good to know that we had started something so positive.
On Saturday St Patrick’s day I woke up, refreshed and ready to go. It’s my third year in a row spending the day in Belgium, at the MPNE conference and despite the intensity of the program we always manage to have a little fun too.
It was again a busy day ahead. In the morning Bettina explained in her presentation, why, Science matters for patients taking us through how to read a scientific paper. Next a presentation from European Society Medical Oncology (ESMO) on: Magnitude of Clinical Benefit Scale, MCBS by Elisabeth de Vries. This scale was developed as a way of comparing often very differing treatments, from a clinical effectiveness, toxicity, quality of life, reproducible, but does not, consider the cost of the treatment so it is a useful scale to understand for advocates/patients. We broke into groups and each group read a published paper on a clinical trial and graded it according to the scale. It was an enjoyable exercise, my group worked together well, and got the grading right.
In the afternoon, we had a very interesting presentation by Pitor Rutkowski from Warsaw, on the new frontier in melanoma. At the moment, this is treatment of Stage 3 patients, and possibly Stage 2 with drug therapy, not just surgery. There are many unanswered questions remaining about using treatment, in this set of patients. The huge progress that has been made was given plenty of time for discussion, with really good questions coming from the audience.
After this was Jens Kongso, Copenhagen on the tricky business of conducting good qualitative research. As patient organisations it is important that research conducted is validated by the accepted tools of measurement if we want it to be accepted by researchers, HTA, and ultimately the people who will make the decisions on what drugs should be reimbursed. It is hard to measure what quality of life effectively is, and there is alway much debate on which is the best way. Its difficult, to measure and quantify a patients feelings, reactions, and what one feels might be an entirely different experience for another. How do you turn that into a number to be added to a calculation formula, as the title of the session said “tricky.”
I must admit at this point I did sneak away for a couple of hours, to watch my country, Ireland, play a very historic game of rugby on St Patrick’s day, our national holiday, beating England on their home ground. Icing on the cake!!
Later that evening before dinner, we had our poster presentations. These were of the usual high standard, we have come to see at MPNE, I presented mine on the benefits and risks of online support forums. We also had our traditional speed-dating session! No not that kind but a chance for new participants to pick the brains of us older dinosaurs, in the fast-moving, chair swapping format, of speed-dating. Tom as usual was the master of the bell, and kept things moving smoothly, in spite of our efforts to delay.
At dinner our resident master of ceremonies, (and no one could do it better), the suave Mr Roald Nystad Eupati Fellow, from Norway, provided the entertaining speech we have all grown to love as another tradition at the conference. Much to my surprise he announced, my poster had in fact been voted by the other participants to come third, with stiff competition from second place Melanoma Uk, and winners Stichting Melanoom Ocular group.
Then suddenly someone had the cheek to attempt to upstage Roald. Crawling across the floor to greet him, was our youngest participant by far, at the conference. We all fell in love instantly with the little lady, who was so good all week-end and ended up being the most cuddled baby ever, we have much, high hopes, she will become a scientist not a princess in the future 🙂
Sunday morning, now not feeling so refreshed, we had our advocacy day to bring the conference to a close. This is when advocates from different countries, get to speak to the conference participants, about projects that are happening in their own countries. I had been asked to talk about the recent Patient Education Program, I’d just graduated from facilitated by IPPOSI. Despite attempting to electrocute myself with the microphone, it went quiet well. There was an interactive game of Kahoot to test the newly gained knowledge from the weekend of the participants, this is always lots of fun, as Gilly includes some hilarious answer options, in the multiple choice questions.
By far one of my favourite workshops to participate in all weekend was organised by Kacie King, Melanoompunt, and Dr Gil Morgan @weoncologists, it was called: Have a Margarita with your Oncologist, we actually all did have one, but I must stress they were nonalcoholic this was early morning!! The idea for the workshop was to give patients an opportunity to ask questions you might not get the time, or just be embarrassed to ask or curiosity about your oncologist. He was a brave guy, we had submitted questions online during the previous week, but he also took many from the patients in the room. He spoke very emotionally and eloquently about the privilege he feels, to be in the position of helping patients, something my own oncologist has, I’m glad to say, also said to me, on occasion. He recounted the difficulties faced by staff when a patient dies. The need for good psychosocial support not just for the patients but for the oncologist too. He told us a little about his personal life and what drives him to do best for his patients. He gave advice on tackling communication problems not only with the tricky oncologist but with the tricky patient. It’s a two-way street, there needs to be understanding, empathy, manners, patience, like all good relationships.
As the time came to say goodbye, I got the gut wrenching feeling I always encounter, when I leave all these special people. Strong bonds, form when you’re thrown into this pit of melanoma, they alleviate some of the pain, they pick you up, make your life feel worth something, still. It doesn’t matter if you drive a fiat panda or a BMW in your outside world, we are at the same place, same space, none of that is important, what is important is the genuine affection, we feel for each other, as we try to get through this messy situation ………. we are friends, we are a family, we are pausing, listing what we need from each other to cope, punctuating this dam disease…….together!!
Ps. regardless of what I said at the beginning I still seem to waffle on and forget my commas and write long blobs of blogs with badly divided paragraphs and inappropriately placed hyphens…. but hey!!.. Ireland won the Rugby so who really cares…….