106. Brain Games

Those of you who have kept up with the Rollercoaster Facebook page will know that things have been quite sad in the Melanoma community over the last week or so.

It sounds ridiculous – but deaths come in waves. There isn’t normally an explained logic to it – apart from the January wave. That is completely understandable & many oncologists & nurses are well aware of its existence.

A patient that is incredibly poorly from late November onwards – no matter what type of cancer – tries desperately to stay around for Christmas. This is partly to get that extra time with their loved ones who come together from far & wide for the holiday season, but also because they don’t want to inflict misery & despair upon those they love over such a normally happy time.

So often they find some inner strength and battle on….they fight the monster & celebrate that one last Christmas ….and then exhausted the monster wins. Not always immediately – but soon. January is often a time of sadness. In the time I have had Melanoma I have seen 3 Christmases followed by very sad months on the social media support forums – we have come to expect it.

There were sadly many of the expected losses to our group….people who unfortunately we were expecting to lose some time soon. It’s inevitable sometimes…you can tell from the wording in a post, read between the lines, and no words of comfort hurt more than…make every minute count.

This January there were some unexpected and very sad moments.

One from a lady who had turned a corner in her treatment & was looking forward to not only putting her dancing shoes back on, but also to returning to work the following week having been given the all clear to do so….

Another from a lady who was the same age as me, I had met her at last years conference. She was in very good health generally, but was concerned about having memory loss and despite raising her concerns to her oncology team, passed away less than 10 days later. This one stung. Not just because of her age…..Not just because many amongst our group didn’t really think (from the information she shared with us) that her medical team had acted upon her worries quickly or efficiently enough. No…this one broke me because she left behind a husband who loved her dearly…and a son…the same age as my own.

So understandably, having had a blue month, I was really very, very shaken….knowing that I sit in this weird Limbo land – having to be unbelievably vigilant…watching and waiting & worrying (and never letting it show because I need to live a normal life & not let the monster overtake me). What this lovely lady died from were Brain Mets (Metastasis) – where the cancer had progressed into her brain.

Brain mets in general are not seen as a good thing…..obviously! But even more so because they are particularly hard to treat. I must add – Not impossible – I do know of many Melanoma patients that have had Brain Mets, and received direct radiation to them, or a drug that is designed to reduce their size – and it has worked.

But there are these funny rules….and these rules don’t seem to be cut & dry. They differ from where the patient is being treated, and who they are being treated by.

In general radiation isn’t offered to patients with more than 3-5 mets in their brain…or brain mets that are larger than 1cm in size. Again I say in general – because as you can imagine this has been a topic of significant discussion amongst us patients & there does seem to be discrepancy with who gets what treatment for these pesky buggers.

So…I am a Stage 2c patient – I am in that unusual place called “watch & wait”….the longer I live without progression the better…and yet I need to be extremely aware that my mitotic rate was extremely high, so if this monster does return it could come back very quickly & very aggressively.

I know it sounds stupid, but I have found a way to live with this uncertainty. I concentrate on a job I very much enjoy & organising the next Melanoma Patient Conference. I have family & friends for distraction & support…I am normally very optimistic…this doesn’t affect me outwardly.

But then one afternoon…only just a few days after the friend mentioned above died I received a message from a very good friend asking if I had seen a particular post online.

I flew online, read the post & can only be extremely grateful that my precious little people were distracted in another room because I completely broke down.

Another friend had discovered they had Brain mets after having a seizure in the bath (thank goodness for the instincts of their 17 year old son who totally saved their life…)…he was very well before then. This friend has since had a scan, multiple mets – too many for radiation treatment and one of these mets is 19mm in size!

How can these brain mets be so undetected? Why when we get our annual CT scans do they not scan our brains when these monsters can create such havoc north of our neckline? Why does it take a fit, or a patients worry for us to know that we are in trouble?

I was & am, very troubled by this.

I know there are reasons for not scanning the brain…but there must be a better way to know what is going on inside us.

There was a post from a study announced just today (click link) that said patients who are Stage 2 need to be aware of symptoms in order to ensure survival.

But when the monster that is Melanoma can go so silent…and multiply with such brutal efficiency we truly need to know exactly what symptoms we need to look for & have much quicker paths to investigate any worries that come up. It’s like a game of Cat & Mouse…a brain game with very lethal consequences.