It’s been one of those weeks….where almost every day something has happened that I thought…oh I must share that with you…and then I ran out of time….and then it came to the weekend & I did something quite unusual.

I seem to live, breathe, eat, sleep, think, talk, & dream Melanoma.

I don’t always mean in a bad, frightening way – although I will be honest that every now & then I still get flashes of anxiety & panic – a bit like lightning bolts only I don’t always see a storm around me to explain why. There isn’t always a reason…or doesn’t seem to be & that can make it all the more unsettling…to suddenly feel your breathe get taken away in fear & unable to explain why it happened without sounding like a lunatic!

Every single day I have been having conversations about Melanoma.

Bizarrely for most of them, my defence mechanism has been to take myself “out of the equation” as a patient.

My life seems to be taking this turn….changing & I am not necessarily in control of its direction…only that I know it is right. Things happen & I know they are happening for a reason….no not in like a hippy dippy chanting humming sort of way, & no I haven’t started smoking anything funky.

For example…I did that immunotherapy course online a month or so back. Part of the course involved online research into sub topics and potential uses for immunotherapy…this led into discussions over things like genetics & genetic mutations & how they impact upon successful targeted therapy. The concept & relevance of genetics with Melanoma has been something of interest to me for a while – partly because of the link between the the Braf positive genetic mutation in my Melanoma that is also present in the Colon lesions I have had.

So it came as no surprise to anyone close to me that I applied for & have been offered a position as Consumer member for an executive working group within the NCRI (The National Cancer Research Institute),  that will look directly at Clinical trials, research into pathology & genetics of Cancer and work towards a more joined up plan of action.

I get drawn to things that I would never have even looked at or thought about before Melanoma….and yet they seem the most natural thing in the world.

The flip side is I disconnect…just that little bit more than I should.

I had my 6 monthly Skin check up this week with The Surgeon (aka Mr Oliver Cassell). I was up at the crack of dawn as per usual to prepare myself & apply my “ Warpaint”…he asked if I was worried about anything or was aware of any changes….I pointed out a series of Moles I wanted him to look at & then realised as we spoke that I hadn’t been filled with pre-appointment anxiety as I might have previously been.

Is it that I was just focussed on the other things I needed to talk to The Surgeon about….the conference, his presentation, patient numbers..etc…..or is it that I have adjusted to the fact that it has been almost a year since I had a single operation / mole removal or medical procedure of any kind? Am I getting complacent with my “good health” that I risk being blissfully ignorant of a potential problem?

Either way when he then announced I was now to be released from 6 monthly appointments and moved to annual check ups, I sort of did a double take.

Has it really been almost 3 years already!

There was this point that I / we didn’t think that 3 years without progression was even possible….not to mention those really dark moments at the start of my rollercoaster when I couldn’t even imagine watching my little people grow up….

I should be bouncing with joy…and I am…..but there is this other side which is suddenly anxious again. Can I really cope without a check-up in a year…do I trust myself & my own eye enough….The Mr has voiced the need for some sort of physical / visual reassurance…and soon we will get that sorted…a more accurate way that I can record all of my moles & how they change – to take the anxiety away.

I know I can reach out to the team in Oxford if I have any concerns…but it feels a bit like I need to learn to swim again. Just as I have established a pattern, I won’t get scans anymore, (I understand why) and I won’t get visual skin / lymph checks as frequently as I have been comfortable with…again I understand why…logic isn’t a factor here….its that age old “melanoia”…the fear of the unknown.

Can I really just sit back & wait?

So I had things I wanted to share…I should have been less antsy….but I felt out of sorts.

I had stopped feeling like a patient & been focussed almost entirely on the conference…which has become my evening ritual 7 nights a week….and then I suddenly felt all patient like again. I looked at my family…my world…and realised they are living this too….and we are all running at my pace …in my juggling act…and it feels a little disjointed. Not everything in their world needs to be Melanoma.

Granted we haven’t exactly discussed “Melanoma” with the little people yet, but they know some stuff & they know I am organising the conference.

But they didn’t choose this….not that I did either, but I have chosen the conference & everything else that comes with it.

I sometimes get so wrapped up in this that I don’t spend enough time concentrating on the things that matter the most…So I stepped away…for the whole weekend.

I am back to reality now…juggling…but I feel just that little bit more re—centred….