Kind of new to all of this (in so many ways), so not sure if this is the appropriate place to post an introduction. My apologies if that's not the case..
My name is Rhys. Although born and raised in the Welsh Valleys, I spent most of my adult life in east Asia before moving to Manchester in 2012. In July 2015 I went to Manchester Royal Infirmary with achy legs; over the next two weeks my diagnosis quickly escalated from severe DVT and stint on Warfarin to incurable / inoperable [I don't know what the difference is any more] Stage 4 Adenocarcinoma with secondary sites in my pleura and rib cage. Surprise doesn't describe it. It really felt like a joke. The cause is totally unknown. The "right" suspect genes are mutated, but in the wrong way. I am only 36 and don't spend my days stripping asbestos.
I was given an initial untreated prognosis of 18 months. I was quickly transferred to The Christie as an outpatient and put on a tri-weekly chemo scheme of Permexetred and Carboplatin, which I have just finished the initial six belts of, whilst continuing to have to inject anti-coagulant twice daily at home in order to prevent DVT or a PE finishing me off q lot quicker.
On the upside, chemo has gone much better than expected. Chemo that was only supposed to "arrest" growth (which seems weird, given that I was obviously not having CT-scans pre-diagnosis and have yet to have any sort of biopsy/histology) has in fact resulted in a significant shrinkage of both my primary and secondary tumours; side effects have been no more unpleasant than a case of the flu [apart from the accursed steroids, their sleep disruption and assault on my sense of taste] and I remain, blood clotting issues aside, pretty much asymptomatic.
And yet I am still in Hell. I understand that my carbo-permexetred must finish now, as it's too "toxic", despite it's positive results. I may, if I am lucky, be put on to something The Christie is calling a "Maintenance" regime of just the Permexetred, to try to keep me stable.
I realise that I am going to die, relatively soon and am fairly reconciled [slash-resigned-slash-head in the sand] about it. That's not the thing that keeps me up all night. I know pain can be moderated, that I might just drop senselessly tomorrow from another clot in the torso. Perhaps it is the fear of absolutely everything else that keeping me awake at night.
I've been writing for my friends and family on Facebook/GoFundMe [I am far from affluent enough at this age to be unemployed], and they have all remarked on how "positive", "brave", etc I am. Of course, as I am sure you guys may understand, that's because I've only been able to write on the days in which I feel upbeat
Maybe I just know I can't do this on my own.