Saturday, 12 January 2013

Life and Mesothelioma

This week has been long and hard, I know a lot of the mesothelioma community has been knocked by the death of Cher, although never meeting her face to face, I and many others felt like we knew her so well.
I have been honoured by Nancy from Mesothelioma Help, she has picked through my blogs and wrote another article about my life.  The link below takes you there but you can read about other people on her blog as well as news on treatments:
It has been a long week at work, can't believe I have only been back 5 days, it feels like months since Christmas was here.  By Tuesday night I was flagging so Wednesday I worked from home.  Bad really as I spend more time in front of the computer than I do when in the Office.  Thursday I had two appointments on the evening, one with Prof Murphy, a wonderful Heart man, he has such beautiful bedside manners and is perfect for his line of work, and Dr Vis, my gastro man.  As it turned out we were early and saw Dr Vis first.  He showed me the photo's of my throat down to my bile duct, in beautiful technicolor I could see a sea of yellow and orange, the bile that is gathering inside me, which during the night backflows from the bowel upto the throat.  No wonder I feel so ill on a morning.  Normally this would incur an operation to repair what he called the set of double doors in the duct, but due to mesothelioma and my false diaphragm surgery would need to be considered carefully.  I had to have a Barium meal to make sure food doesn't stick on the way down, unfortunately for me, Friday morning I had one, yes the bread stuck! I have a new regime of tablets to take - I hope they work as I will probably not be able to have the operation.  Quality of life just doesn't seem to go in my favour.
On a good note my heart hasn't changed since the last test, this means the fluid hasn't restricted any movement of the muscle.  Due to having the small amount of chemotherapy though he can't tell me anything about changes in the fluid, we will have to wait until I have 2 scans done so he can compare.  But, and there's always a but, long haul and medium haul flights are out at the moment.  If fluid isn't stable it can expand and cause a multitude of problems.  No Dubai or Bahama's for me at the moment.  My heart is pumping well, no signs of angina (which runs in the family), BP and heart rate were both good.  At least something is going well for me!
I was reading Debbie's blog and she is quite down at the moment, Linda & Steve have also commented on the thin veil of sanity we live under, a good read if you haven't as yet.  Fortunately for us our blogging is our release for our feelings, sometimes this can be unfortunate for those who read it!  But it is true when people always say "You do look well" do they want us to be grey, have tumours spouting out of our heads, stomachs, backs?  I sometimes feel like a fraud when people keep going on like that and feel the need to pull my top up and show my scars!  Mesothelioma has aged my by 5 years, my mouth now turns down instead of up, pain brings lines that we shouldn't have, and take the sparkle from our eyes.

On that note I must get in the shower, I have to head into work this morning so I will be missing facebook out.  This is my second attempt at writing the blog, the computer just lost everything I have written.  I do hope the weather brightens this afternoon as I would love to go over the fields with the mutts, feeling a little jealous as Bear is becoming more Daddy's boy than Mammy's, why, because he takes him out everyday!  Dogs can be fickle at times....
At least we are looking at holidays towards the end of April onwards, I just hope the med is warm then, I can't remember but it doesn't really matter as the weather is changing world wide.  When Greece was once hot in April and October it is now wet, Dubai had more rain in January than ever before and England, well what can we say!
On that note, time for a cig, mouthful of coffee and shower, I'll not get much done by the time I turn up that's for sure.
To everyone stay strong, easier said than done, don't let others get you down with stupid remarks and remember you are never alone with meso, as long as we can move we are alive.  Yes, we all get those dark thoughts but its Saturday and although my chest pain is annoying this morning I refuse to acknowledge it, hope you can do the same.

No comments: