Jumat, 20 September 2013

A sunny morning

Yesterday morning I woke up soaked with sweat and felt a little out of sorts, the rain was lashing down and the sky was grey so it was a good day to work from home.
I only ever updated the blog once or twice a week but during the course of these changes in my body it seems the blog is getting more and more updates than ever before.  Maybe my last journals of  my life that for not other reason I want to share.
Joyce came over about 2.15 and I had an aromatherapy massage, I just had my legs and shoulders done, the worry of the last time close in my mind.  I don't want that bile back.  Luckily it hasn't come, not sure whether drinking so much milk is helping.  A glass or two while I watch tv from 8 till 10 then I take a small glass to bed with me.  I do wake up with a very mouth, I think this is due to the water tablets, and milk doesn't quench it but then it has worked so far with the bile.
I did have the sweats quite a lot during the day, but I have to say they weren't the dead rabbit smelling ones.  I think my cancer has changed again.  In the early days the cancer growth seemed to run in a pattern, every 12 weeks I would take ill for 23 days, then just before I was diagnosed I was ill all the time.  Surgery and treatment stopped this happening until it started again sometime in 06 when it became every 10 weeks, but the pain would only last a couple of days at most.   Treatment again stopped this.  After surgery in 09 I didn't have any problems until 2011 and they came back, every 10\12 weeks I would be having the adrenalin rush (fight or flight syndrome) but since July when I had 2 together I believe the cancer has changed and gone into a constant growing spurt.  Hence the stomach not staying down, my right lung hurting.   Last year I thought both Lexi and I would die in 2013, maybe its the 13 that made me feel this way.  We hear that saying mind over matter, I just hope my thoughts of not surviving 2013 didn't set the cancer off!

Anyway my massage was wonderful, then I made my oddball lasagne for tea then went back to doing some work for work. 

The sun was shining this morning at 7 but now at 9 we have grey skies again.  In summer when its sunny the sounds outside sound so different to when it shines in autumn and winter.  I wonder why that is?  I am going to go into the office this morning and get some other work done.  I always find I need a different file to what I have when I'm working here, or I've left something at work that I needed.  I sent Gary into work to pick up a load of files for me yesterday and yes I still left something off the list!
Linda Reinstein spoke at the Washington Senate yesterday on behalf of mesothelioma victims in the USA, regquesting the ban of asbestos.  Please see Mavis's blog or visit ADAO for the report.  We need the use of this rotten material fully banned in this country.  I bet there are things that still come in which have asbestos.  I heard about drywalling tape having asbestos in it if it is made in China.  So DIY fans beware.
My stomach has slightly grown which is becoming a worry.  If Prof Fennell sees me with a 9 month lump out front will he too turn me away?  I have to hope it stays down enough that I don't look near end of life.  Then I have no idea what to do, do I go and get a drain or see if treatment works, that's if he gives me some.
I spoke to a person who has tried the herpes virus in Sheffield, yesterday.  Details here:
He had one dose put into his drain, it seems his own immune system wiped the virus out before it could do anything.  He didn't feel any different and the cancer hasn't done anything different.  Such a shame but that is only one person.  He doesn't talk a lot and getting answers out of him was quite difficult.  He had good results on his first chemo and I found out yesterday he is under the same oncologist I went to in 2011 and am still with.  I also found out that he has never been offered a rechallenge of Alimta\Carbo even though it worked well in 2009 for him.  Makes me wonder if the onco only wants us to go on trials rather than treat with known treatments.  He explained about his chest drain too, how when he takes too much fluid he gets a terrible ache in his chest, like the drain is bashing against his lung.  Pretty much the feeling I had when the drain was in my stomach and bringing nothing out.
So that's my news, I am going to go in the office for a couple of hours this am then Liz is coming over to get the rest of book 2 finished, hopefully.  It means another re-read to ensure no more errors then that will be ready to publish.  I can't wait to get this one done, it is a much better book than the first, more to do with the spirit world. 
I hope the rest of our community will enjoy the change again and have some sun in their part of the country or world.  Keep brave my meso friends and carers, this cancer takes everything from us.

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