I am in a very good place right now.
I feel fit & healthy…..well ok…less fit than I should because I haven’t been to running club for a week having been side-tracked by other things like family visiting from America and trips to the hospital to get that great CT scan result!
So the fitness element needs work….which is very much planned & shall be discussed in my next blog post!
The healthy…..well again a confession required….we spent the weekend in London celebrating various family birthdays & were out again last night for a farewell family meal with the American visitors…so the eating has been less “healthy” and more naughty…although in my humble opinion “ice cream” is not naughty as much as it is vital and a necessary indulgence!
Putting the recent lackadaisical health and fitness element to one side…I am currently NED (still bragging!)….I don’t feel unwell in any way…although a decent 8 hours sleep wouldn’t go amiss…there are no imminent plans to remove Moles and the next Colonoscopy won’t be for several months – I have a clear window of happy!
There is a magical feeling of calm and I should hold on to that…shouldn’t I..?
And yet yesterday on my way home from work I pulled my car over & shed a tear.
I am a member of a support group for Melanoma patients and their family members…I have mentioned it before…we share our journeys, our fears and advice….we are friends…some of us have met….some haven’t. It truly doesn’t matter. We share something….in our heads….that just can’t be comprehended by others.
I couldn’t possibly come home every day and discuss Melanoma with my family….they need to have days when the word Melanoma isn’t mentioned. They need to still be “normal”. I think I left that place a year ago….I struggle to not mention it. Even when I am given a clear CT scan….even when I know I am fit & healthy and not currently facing anything medical or surgical… I want to find out more about it…I want to know everything about every single drug on the market…what side effects they have…what works…what doesn’t….so that when (if) the monster returns, I am ready, armed with everything possible….prepared.
I am working on projects and plans that I am getting great satisfaction from – that involve Melanoma & my discussing and thinking about Melanoma daily.
But the thinking….the talking….it’s a choice that I am making.
There have been moments of sadness over the last year when I have consciously stepped away from the support group for periods so that I can move away from the grief of others…I haven’t been able to process it at the time.
I was away from the board all weekend – away from the internet completely – spending time with lovely family. No Rollercoasters….but lots of tubes…which the Little People loved!
Yesterday I checked my phone for notifications on my way back from meeting a client…and briefly caught up…..one post in particular caught my attention….it wasn’t the post of a loss…more the acknowledgement of time…slipping away….
The drugs on the market currently to treat Melanoma are improving….the PFS (Progression Free Survival) that these drugs offer us patients is getting better….but not all drugs have the same effects on every patient.
Some patients get great windows of time on 1 particular drug…the drug works for them….and then they realise that the drug is starting to fail. Hopefully this is gradual so that the Oncology team have the chance to wean them onto another drug and for its resistance levels to get high enough to fight the Melanoma before it causes too many problems.
Patients often start on 1 drug….spend a few months or years on that drug and then move onto the next drug…for a few months (hopefully more)….and then another, perhaps mixed in with a bit of radiotherapy to reduce the size of tumours…but there aren’t an endless number of these drugs….and sometimes the drugs just can’t keep up with the power and vicious intent of the monster inside.
And so we share our frustration…quietly pray for miracles….and admire the strength and dignity with which others handle these insurmountable barriers…the clock that ticks faster than time allows…hating the rollercoaster ride of Melanoma for throwing in a lethal twist or loop from which there is no continuation to the journey.
I choose to read…I choose to stay in this world….the surreal perspective…of knowing that someday…possibly….probably…this will be me.
I can hope that when my “time” comes…the drugs are better…they give more time…or take less cruelly…I can hope that….but I don’t “know”.
What I know is that I AM in a good place…and for every single minute that I am in this place…I will fight for Melanoma patients…like my friend….and like me…..and like the people who haven’t even been diagnosed yet.
I took my moment….but I am glad I am in that good place…because I hate this monster.