Sunday, 28 July 2013

Inclement Weather - Like my Meso

I actually stayed in bed till 10 am this morning, another late one for me.  Even better I think hubby has caught up on his sleep, coming down stairs around 11.30.  The rain sounded beautiful last night as it just kept coming, watering the garden and hopefully clearing the air.  Unfortunately, it left the clouds.
My stomach doesn't seem to have gone down any further and is now bruising on the outside, more so the left than the right.  Strange as the needle went from right to left, makes me wonder just how far through my body the needles went.
As hubby took the dogs I settled down to make a few phone calls, I am terrible at ringing people but the door bell rang and my friend Lorraine was stood outside.  It was great that she visited, having been at a family wedding yesterday we talked about that and she showed me the photos.  We didn't mention my current situation, anything but.
Hubby had another nap this afternoon, he is drained - to all carers out there, this is normal for you to feel this way.  The adrenalin is cursing through your veins too when things don't go right for your partner or you feel helpless and unable to do anything.  Problem is though he thinks I am now fit and able to just forget the whole thing, like my stomach will disappear by magic or the water tablets will reduce it all.  I'm not peeing, I don't feel hungry and any weight I am losing at present is due to lack of food rather than loss of fluid.
Another friend rang too, she has finally got back to her normal life after having a hip operation.  It's good that things can go right for people, after all she didn't have a good year last year breaking her ankle then this having her hip replaced.  Life does go on.
I feel at a loss myself, I am full of pent up rage that I can't release, I just don't know how to let it fly!  I wish I was in what Dot wrote recently 'A Dream' and any moment now I will wake up.  My mate Lou has wrote a very good blog yesterday and what she wrote sometimes rings true.  Being another long term survivor sometimes can leave you feeling guilty that you are still alive and others can resent that fact.  I have outlived a few people with different types of cancer, Linda with breast for instance.  Her diagnosis wasn't terminal yet it took her a few years ago. 
We are trying to bring awareness of asbestos and the dangers of what life with mesothelioma can be like yet politics and 'I'm more important than you' syndrome is always out there at the top.  It's like some club where the committee can never get on and always someone trying to be better than another.  Why can't all the organisations work together, keep their own identities but share and work together on projects?
Physically I am also wiped, I forget (so does hubby) that my body is also trying to fight off rogue cells from growing inside my body.  Great from the shoulders up I look so healthy, what a sun tan can do for you!  My stomach is hard, when you have natural fat you can suck it in and fasten trousers without being uncomfortable.  I can't suck in, let alone feel comfortable.  My back is still aching and my meso is doing something different.  Maybe the strain in the right is different to that in the left, I have heard of this happening.
I am feeling sorry for myself, maybe if you are reading this you too are feeling sorry for your own situation.  I know that I have to find the strength to fight another day.  I owe it to me to survive, I have punished my body so much with operations, chemicals, radiation, freezing that to give up now would be unfair.  I look back to my endo - was it really endo that I had, could it have been this terrible cancer then?  I have had so many operations for health it makes me wonder how some one could put themselves through it for vanity.
When I have listened to people complaining about their life, situation and even health I have always shown empathy and tried to help, yet without the support of a few people, those on here and face book, I have never really had that for me.  A friend is a binge drinker, she is carrying excessive weight because of it.  At the moment I am so annoyed at her because she could be healthy, instead she is damaging herself for what, to lock herself up in a bedroom and drink into oblivion, when she comes through the other side she seeks sympathy.  I have watched this for years but now I don't think I can do it anymore. 
I have wasted today, I went out for only an hour this afternoon.  I sat and read this afternoon, I feel guilty about that as I should be correcting my own book to get it finished and hopefully help raise some more money.  Although why bother, the first one has sold 62 books from here and maybe 19 on kindle.  Yet writing is something that I do enjoy and it does take my mind away from what my body is doing. 
I may be asked to do some more interviews for the local papers regarding mesothelioma and what it's like to be dying from a man-made disease.  I hope they do them when I am fat, although the one I did in February 2009 I was fresh out of surgery and I didn't look that ill.  Anyone that passes me would never know about the time bomb I carry inside.
I do feel for the people who love us, they watch us as we suffer from chemo, see the fear in our eyes as we have an adrenalin rush.  They feel helpless and want to call ambulances, where we won't allow them too.  I know that the NHS has improved, my recent visit has shown that.  But once I was rushed in, ok before being diagnosed, and I was left sat in a chair for 6 hours in agony.  Not one person came to see if I was ok.  Things have changed but the fear of being in a hospital bed feeling bad isn't a place I want to be.  Less so when they say they have nothing to help treat you.  I still can't get over my oncologist who said to treat the effects we need to treat the disease but by the way you can't have any treatment. 
I should be filling you with positive thoughts, telling you that you can keep buying time, after all I have managed it - but sometimes at what cost.  I have dragged hubby to the States to have treatment, I wasn't worried but he was.  I didn't look up the dangers - he did.  I wasn't awake enough the last time to understand what could have gone wrong when they pierced a vein in my lung - he knew.  I would fly out tomorrow and have my right growths cryoablated, he would not be happy about it, but as it turns out I can't fly that far.  It still annoys me that they can't see the benefit of it in the UK.  It does less damage than radiotherapy, yes there can be complications like piercing the lung or hitting a vein but then with radiotherapy they can burn the organs.
Tomorrow is Monday, I am going to try and go into the office.  I can't guarantee until I wake up as to how I feel and that is something no one seems to understand.  If I've had a bad night, sweats, pains and bile burning my insides - am I going to jump out of the shower and shout I'm Alive and bounce into work.  Do my brothers not want to see that sometimes it is a struggle.  Then I feel guilty as one of my siblings is in a worse place than I am.  Having MS, having to wear a colostomy bag because of it, having lung problems including asbestosis.  He goes everyday, whether weighed down by unbearable pain or not.  That makes me feel guilty too - many years ago I did the same, I would go regardless but now I just can't summon the motivation or energy.
There I have emptied myself to you, I may sound selfish, uncaring or totally negative but I have to get it out.  If you feel the same, open up word or notebook and get it out.  Whether you're the carer or sufferer, get those feelings out, don't reread what you have written, don't feel guilty about writing those thoughts, it's wasted energy being used inside you.
I hope that tomorrow I will be better, that I will shine with the sun, smile in the breeze.  I am always happy to be alive but that doesn't mean I am always happy with life.
Wishing you luck on your Mesothelioma journey - where ever you are - No One Deserves This unless you are a cold blooded Killer.

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