This is not one for the positive thinking movement.
I guess a single reply to an old friend on Facebook sums up the current situation .
Not every day is a good one - let's not pretend...
In response to post about a rather alarming capillary bleed in my left eye caused by consistently high BP ...
" No. Just very high BP. I should, apprantly, lead a less stressful life and take charge of my life. Wow! Was all I could come up with in way of a witty response. Still awaiting the 'to-treat-or-not-to-treat' confirmation & reasoning. One team = chemo, another team = radio in the AM and then [after a MDT? Meeting] no treatment neefed in the PM. Both have same data. Neither has looked at the full bone marrow results yet. As I type the GP calls again. They are just as confused as I although doing sterling work on my behalf, for which I am incredbly grateful. Letters are being written, meetings arranged. Oops, this doesn't breach the Münchausen-esque positive at all times policy of social media does it."
10 weeks of this has eroded to the core.
I have not slept with any consistency for a week or more. Which cannot be helping matters. I have upset & frightened someone I care for above all others, probably severing our final connection in the process. My organisational systems are crumbling. Action is needed. But what?
As for the exercise & healthy eating... well, despite a detailed 13 week plan, it has all yet to start. Last night I just glided to a standstill, climbed off the bike and brooded, grumpily.
A loss of job, the ending of a relationship in all practical purposes, yet another relocation, the inability to even apply for a post dye to the uncertainty, and a unforgiving and draining carers role have all combined to rather overwhelm at the moment. Add to this the frustrating variation in energy levels and lethargy and....
No, I haven't called the charity helplines. No, there is no one to join me in the clinical meetings during which the information is simply impossible to simultaneously listen to, discuss, question, & record. I am probably very much mistaken about a few key facts?
Such a relentless sense of the unknown, constant anecdotes from people who know know people who have overcome all with apparent ease and sans all assistance, and medical contradictions are proving deeply frustrating.
I just want to know what I need to do and prepare for next.