Having been wondering what is going on with my chest and heart I was looking forward to the appointment with my specialist. Here I would gain understanding to what was happening and glean any advice forward. The only thing I gleaned is that we are still really out on our own. I waited some 3 hours to see him for a 10 minute mumbled meeting he had pretty much with himself.
I had sort of hoped that our Doc's were there to guide us through whatever choices we have to make or tell us what is or isn't working. The only thing I got out of the meeting was his concern I have too many scans. If I hadn't have been taken in to hospital I wouldn't have had too many scans, and as I pointed out, with meso having the reputation it has you would be mad not to get it checked every 3 months.
I am sure I have been on this soap box before, why let a surgeon work all those hours to fight for our life, remove the bloody cancer and then our chest doc's just let it come back! I have no idea whether I am still taking steroids, who is looking at this pressure in my heart, and to cap it all how my own Doc tells me I have a nodule growing and this doc says nothing.
I hate to do it but I need a doc who is prepared to give those 10 minutes to me, to be bothered if my scan shows a growth or not. When I carry out my job I give it my full attention, why should doc's overlook the care of their patients any different? I know they aren't allotted a decent time with a patient (15 minutes), you bring in a new case that takes an hour, then they are 45 minutes late on the first appointments. They have a voice, shout up! Tell your bosses you are over submitted, but please don't take it away from the care and advice us meso people need.
I have no idea what is going on, if Dr Abtin says I have a growth I will just go, he isn't charging for looking at my scans, hasn't made a penny out of me and at least can be bothered to look and ask and advise. Funny we all say we would hate the USA way of medicine but at least they give you something to work with.
I really wanted to stay within the realms of the care team that I am suppose to have, I was excited to have a team so I could refrain from worrying and enjoy my time .. well that's gone, I haven't stopped worrying and really would I really trust again? Without trust between doc and patient you haven't really got much have you?
What I find the strangest is that the surgeons seem to take more care and proactive action than the medical side who assess and decide your future. Debbie and I have pretty much taken our own care into our hands and hence I feel that is why we are still here today. Yes we need the Doctors but if they are unwilling to advise or point a way forward then you have to take control, it is your life anyway. As for me, I just wanted a break from it all, so back in the saddle to see what's going on and hopefully survive another round of what is coming my way.
Prays and thoughts to Hilary and her family for Friday at 12.30.