Saturday, 29 September 2012

Depressing Read my Meso circle

Where would I be without my meso circle? You have been there for so many years, long before I actually started to blog and I do appreciate the friendships we have made, the emails we share.  Even though I have never met many of you I feel that we have all been together fighting this battle together.  We pick each other up at times of need, show empathy when required and make each other laugh with the odd joke or comment on normal life.
Part of me wishes I had started the blog a long time before, but I wasn't sure how to create one, but there again through chemo I think I may have wrote comments that would turn everyone against even trying it.  Hubby and I were discussing chemo last night and how I will feel during it.  He said if I had wrote about it then maybe I would stay well away from it, which made me say something like "When I'm gone you can always read my blog if you want to remember something" didn't that sound cold and heartless.
I have to admit that I am actually terrified this time round, I know that before the operation in 09 I thought my time was here and that I was facing my last few months of life, but I still had the option of surgery and I don't think I felt as desperate as I do now.  Three years later that thought is always in my thoughts.  During the years of 04 to 09 I knew I had the option of surgery in the background, now that the operation is no longer an option - been there done that - its back to chemo or trial.  Then its the - what if the trial doesn't work will I be well enough for chemo - if I do chemo first what if it doesn't work and I have nothing left.  I know that many go through these same thoughts.  My friend Danny tried chemo again but it didn't work and he died, bravely I may add, he took it on the chin and ensured he made the last few months of his life memorable.  I don't think I can do that, I haven't that courage inside.  I am truly scared of dying, the pain that will make each day worse, the fear of being stuck in a nightmare once they decide I need a driver pumping me full of morphine so that my eyes can't open.  I hold these fears to myself, having only ever shared them on this blog.  I know that only a few will read them, strangers to my life in many ways, but its my one place of total release.  I can write this so easily because I know that those close never read this, so they don't know the thoughts that race through my mind. 
Hubby can feel the change in my demure, he says since the scan I seem down and I always talk about it. I told him its usually the only time we do talk about it.  The period of getting the results makes us talk about it, this lasts a few weeks then it is never normally mentioned until the next results.  This time is different, the meso is more aggressive than it has been over the last 2 years, not that I have the size of one of Mavis's tumours sitting in my chest, but its the heart area again that scares me so much.  That's another thing this time, usually they quote the sizes of the singular tumours that have grown, none this time, just multiple scattered pleural nodules and axillary lymph nodes.  I wonder if my 3rd boob has grown any further than its 7cm x 7cm or how much closer it has broke upto the underlying skin of my chest. 
I need an escape from my mind, a place where mesothelioma doesn't exist.  I use to read the macmillan sites, once they finally got a section for meso, but they made me depressed.  I haven't been on the site for a year or so.  Now I've joined face book and some days that makes me feel the same.  Yet here I am writing my heart out and bringing sadness to my blog.
I know that if I do Chemo I won't be going anywhere, I'll end up with weight loss, my stomach lining destroyed, my water works won't be normal again for a good 6 months, maybe it might be different this time.  Why is it some can just go through chemo so easily, by day 4 I haven't a stomach - food and water are like acid the minute they leave my mouth and travel the distance of my throat to the intestines, three days of pure agony, then the slow climb back to stability - but I will do it, I have to do it as I don't want to die, I'm not ready to die, I'm too young to die!  How do we prepare ourselves for death.  It could be years without doing anything if it was just in my lung, my left lung is shot anyway but the heart, why did it have to come back there!  Why can't they go in and slice it off, peel it like an orange .... I know they can't but it doesn't stop my brain from yelling this out every minute of every hour.
Will the trial work?  Will I even get on the trial?  Should I do Chemo instead of the Trial?
I need direction but hubby has reiterated the fact that whatever I do I will blame myself for not doing the right thing but then every decision I have made so far as kept me alive, each choice since 07 has been mine.  I toyed with the idea that I did the surgery too early, on reading the doctors notes back I did it at the right time, any later and I would have been ruled out as it would have been through the chest wall.  I have deferred this scan because I wanted one last good summer with hubby, I knew it was getting bad but I wanted to keep it out of my mind, I had wrote before that my heart was heavy and I feared it was there, April 11 it was showing its ugly head near the heart, it was just a matter of time.  So here I am feeling sorry for myself, not an attitude I wish to have for long.  I get sick and tired of hearing be positive, you've done so well, you have had so long.  I know a guy who was diagnosed the same time as me, he is ill now, but over the same length of time has had only 3 sets of treatments me, I have loads to last the same length of time, have I had Quality - I'm not sure at times but I did have life. 
No one has the same disease, it is different in each and every one of us and that's what you have to remember my meso friends.... some can have chemo and it doesn't affect them but stops the meso, other have a terrible time and no remission, some have both.  Some have meso that is a sheet, others a little thickening, others a couple of over large tumours.  Some have mixed strains, it doesn't matter we are all different, hence the problems the medical buffins have to fix us. 
Tomorrow is another day, thanks for letting me get this out, hopefully my brain will stop yelling meso at me and let me get back to having a life, just wish it was without pain.  They say we can get you on top of the pain but at what cost, zombie Jan isn't who I want to be, so I live with the pain. 
Today I went with the dogs and hubby over the fields, the wind was so bad I had to turn around and wait in the car, Bear didn't know which way to go - follow me or hubby.  In the end he followed hubby but kept stopping and looking for me.  It doesn't just affect me or you it affects everyone in some way.  I sat in the car and wondered will I get to be here next summer and hopefully be able to go out everyday with the dogs, it didn't happen this year - we didn't have a summer!
On that cheerful note to end such a terrible posting I bid you a good day and hope and pray that none of you are feeling this way or facing this at the moment.  If you are please feel free to let it out on an email to me, somehow it always takes your own worries away when you worry about someone else.

1 comment:

amanda said...

hi Jan,

sorry to hear the latest news and know how hard all these decisions are to even think about, let alone have to make.

The more I know about meso, the more I think there aren't any right or wrong decisions, all anyone can do is make the best decision for them, with as much info and as much hope as possible.
wishing you all the best for your talk at the weekend