I have just read about my meso friend Lou and how she is now only offered trials in Oz. We have come along way in our journeys, Lou I believe a year more than. She too has had surgery and chemo several times and is far from giving up the battle to continue.
What a friend said the other day, if we had diabetes then one cure may suit all but with meso we are all different, even the disease is different in each of us.
In the UK they have never really staged meso because it isn't that simple. Say someone with T1 may have much more pain than someone with T3 but then T3 may die a lot quicker than someone with T4. I remember J Steele telling us at a conference it wasn't worth doing, so if you are diagnosed and given a stage, forget it, it means squat.
What I always advise to anyone diagnosed, newly or not, keep records. Since surgery I actually stopped doing that believing the meso would stay away for years, then last year I was starting to mark a diary up when pain came etc but again scrapped it. After my chat with the lung nurse I know I am going to have to start recording temperatures, pains associated with meso, even down to when my eyes play up.
We all have an idea when things aren't quite right, but we don't always associate it with the meso. If you want to learn if your meso runs in a pattern then keeping a record daily or weekly may help.
We are all a mixed bunch, us meso bloggers, four of us women have it and the wife's of two men blog on their behalf, then Steve in Oz blogs for himself, the only male I believe to do this. We need more bloggers to help those who are just diagnosed. It isn't easy opening yourself up to the public sometimes but it is therapeutic because you get all what's inside your head out. Although many do this on facebook too.
I haven't got lots to write today, the effect of losing friends last week still hangs over my thoughts, my own meso has affected my mood and knowing that maybe I have come to the end of treatments available isn't something to dwell on.
But its Monday, a new week and hopefully a better one, once I see the physio on Thursday maybe my leg\back will improve. Just need to find a way to get rid of the heavy pain now sitting back in my chest. Strange how just a couple of mm's can bring so much pain to a body. I used to ask Debbie often if she had pain and her answer always no, until this year she was pretty much pain free. I hope that is the way for many more but those who do have pain I feel for you, 13 years of meso pain has worn me out and prior with endo for another 14 years. My body just can't take more.
On a bright note the longest day is nearly here, lets hope the weather remembers summer is here too!
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