A few weeks ago I went to my first melanoma support group meeting.
Attending a support group meeting is something I never thought I would do. It is something that I was scared of.
I was scared that I would potentially be faced by what would be my future. I was worried that we would be sitting around in a circle discussing our treatment and our feelings. I was worried that I would begin to compare my journey with others. I was worried that I would be bombarded with suggestions of crazy diets that will cure my cancer or distant lands that promise remission. And, I was worried that the green-eyed monster that has appeared in the last few months would thrive.
I am not against meeting other people with melanoma or sharing my story (or you wouldn’t be reading this right now). But I have wanted to stay in control. I have not wanted to open myself up to questioning the path I am on. I haven’t wanted to hear about people’s success stories so that I can protect myself from being too hopeful. I didn’t want enter into a space where I may leave feeling that I am not fighting hard enough to survive cancer.
In the last few months, the trial treatment that I am receiving has been in the media, and many have labelled it the ‘wonder drug’. Don’t get me wrong, this is fantastic and I am so happy that I am on this treatment. However, this is where the irrational green-eyed monster appears.
I was lucky (as lucky as you can be with rapidly growing lesions) to be able to jump onto a drug trial when my first treatment failed. Since starting the treatment in February I have been responding and the majority of my metastases are shrinking. However, this was all in doubt almost three months ago when we found a mass in my brain. This put a huge spanner in the works. My motto has always been ‘as long as the cancer has not spread to my brain, we have options’. I was well aware that the presence of metastases in my brain would mean that I would be kicked off this trial and leave me ineligible for most other trials available to me. This was not the news I was after.
Fast-forward a week after I had this scan showing the brain mass as well as an MRI to confirm if it was indeed the melanoma that had found its way into the brain, my scans were still inconclusive and to this day remain that way. This meaning that I can remain on the trial.
During this time, the trial drug I am receiving was released on compassionate grounds to 125 people in Australia. Thus meaning that these patients, who were not on the trial, can receive the treatment before it is officially released on the Pharmaceutical Benefits Scheme. These patients do not have to jump through hoops to make sure that they don’t get kicked off the treatment. They can have brain metastasis and still be eligible for the treatment. And gee I am jealous! A jealousy that comes with such guilt - here I am feeling jealousy towards people, who like me, are faced with a very short future.
But the reality is that I was never eligible for receiving this drug on compassionate grounds. But that doesn’t stop my completely irrational jealousy from taking over. These 125 people missed out on the drug trial. For some of them, they have been battling the last 6 months on treatments that don’t work hoping that this drug would be released before it was too late for them. I shouldn’t be jealous. I should realise how lucky I am, because the reality is that I wouldn’t be here today if I wasn’t part of the trial. The reality is that there is nothing rational about this horrible disease.
The wonderful people from my first support group meeting (and the handsome man on the far right is my dad)
This brings me to attending my first support group meeting. And where, to some extent, I realised I wasn’t alone in my feelings.
My first meeting was at the Melanoma Institute Australia (MIA) in Sydney as I had spent the day visiting some of the staff members. Jay Allen, a Stage 3 Melanoma survivor, who runs the meetings, had invited me to share my story. I had mentioned to Jay that I had fears about attending support group meetings, but he assured me that all would be fine. He told me a little about how the meetings run and that there is a broad range of people that attend the meetings – survivors, family that have lost love ones to melanoma, and people at various stages of their melanoma fight.
And so the meeting began. After introductions, I was asked to share my journey with melanoma and what my hopes were for the blog I had launched a few weeks prior. I was so proud of myself, I had spent the whole day at MIA without crying, and ‘bam’ a few minutes into talking to the group the tears started flowing. I was that person that I had feared.
It was after I finished speaking that I quickly learnt that quite a few people in the room were either on the same drug trial, had just been notified that they had been considered for compassionate access, and for two very special guests, their loved one had passed away having hoped that they would be granted access to this drug.
This lead to a highly emotional meeting for everybody involved.
We all were at different points in our experience with this 'wonder drug'. Here I was upset because a silly little lump in my head could remove me from the treatment that is keeping me alive. There was a fellow Queenslander who moved to Sydney just so he can access the trial drug, putting his retirement on hold. Another lady was crying with joy because she had just been notified, after a long struggle of failed treatment, that she was one of the 125 people that will have compassionate access to the drug. And there were tears of sadness for the young man who passed away before he could receive the drug.
It is amazing that one drug could bring a group of strangers together. It is amazing that so much joy, and sorrow, was shared by complete strangers. It is amazing that one drug can bring so much hope to a group of people. And, it is amazing to know that other people have little green-eyed monsters that lurk deep, wishing that they or their loved one could get their hands on this ‘wonder drug’.
I left being happy for those of us on the trial and those that are the lucky few that have been given compassionate access to the drug. And, I left feeling great sorrow for the many people that will miss out on receiving this drug.
But most importantly, I left the meeting not feeling guilty about my irrational jealousy. We are, after all, on the same journey. A journey where we all wish for a bright and happy ‘however long’.
I want to say a big thank you to Jay, and the rest of the team, for making my first support group meeting a positive experience! Jay has dedicated his life to raising the public profile of melanoma, as well as raising much-needed funds for melanoma research. But, more importantly, Jay is a friend and a support for so many melanoma fighters. Jay and a fellow melanoma survivor, Andrew, embark on what will be a very cold 900km walk from Sydney to Melbourne on 11 July to raise money for MIA. I have included a link to Jay and Andrew’s Facebook page – please follow their trip, leave a message of support, or even donate!