Wednesday, 1 June 2011

Do we help - I hope we do

I had a lovely email the other day from a lady who's husband is on this journey.  There are quite of few of us writing blogs about how we cope.  I remember when I started out with meso and you did a search on it you were lucky if 3 pages came up and all but 3 were solicitors (usually American) on about claims.  Now there are hundreds of pages, still alot of solicitors but much more with information on the cancer, how it works and what it can do.  There are also lots of references to stats saying we only have so long to live etc.  Yet there are quite a lot of us out there still holding on, but most importantly there are real stories about real people and I truly believe they help.  If only one piece of information reaches one person where its needed then sharing your thoughts and info is wonderful.

When I was younger and felt a little low, you know fell out with boyfriend, didn't like the boss etc, I use to write it down and get it out of my system then tear it into little pieces.  For me the blog has become something like that.  Maybe I share too much and then other times I don't share at all.  Over the last few weeks I have wanted to hide my head in the sand and wish I was some one else or some place else, we all need an escape to something other than meso and boy do I need one from myself badly. 

I honestly believe that the gaberpentine have a lot to do with how I feel but I also remember the night before cryo in LA and I told my body that this would be the last time I would inflict more damage to it.  How it keeps bouncing back is beyond me.  My mind already had the seed of defeat and I do think these tablets are helping to feed that seed. 

I went to healing today, all morning my side felt like it was burning, especially between two ribs and every so often I kept getting a jolting pain through it.  While I sat through the healing I realised the jolting had stopped and 30 minutes later the burning had ceased.  Was it healing or could it be simply the pain had burnt itself out.  I have to be honest I am dreading the forthcoming scan, after having surgery I honestly thought it would be years before I needed to worry about the meso and all I did during those 24 months was moan about pain, but pain is wearing.  Now there is nothing really out there that can remove the whole lot, you seem to think of surgery as being the final hit to the disease but that dream fell apart and I am left to pick up the pieces.  My family and friends don't seem to understand anything apart from wanting to push you on into some other kind of treatment.  Whether it be right or wrong they want you on a treadmill .. this is where you have to be careful, jumping in too fast can be as bad as jumping in too late. 

I have pushed my body to the limits, thinking that it can get better in days rather than weeks but if we aren't strong we can't fight and by not giving my poor body time to regenerate its energy I am wasting more energy by doing something other than recovering.  All just to be normal.  No more was my cry in LA but I also don't want to lose the battle either.  I wish I could straighten my brain out but I am so exhausted I can't think in a rational way.  Hence I think the tablets aren't helping.  I am so tired but sleeping isn't making me feel refreshed. 

Before I sound like a long playing moaning record I will go, always hoping tomorrow will be better and brighter, just one day of feeling good would be so welcome. 

This is where I hope you are feeling good, pain free and worry free - long may it continue, so if you are that lucky thank your body and make it feel special. 

To Alan and Heather willing every bit of luck going for you both.

An exhausted, overtired and overwrought Jan

No comments: