Monday, 11 March 2013

Trapped indoors

The weekend was a disaster on all fronts, the weather was persistent in blowing gale force winds up north then the rain and snow all day yesterday.  Needless to say I never made it over the fields with the dogs.

I can't believe that 2 years ago today my mam passed away, the time just seems to go by so quickly in one respect but slow in another.  It seems longer than 2 years since I last saw her but it doesn't seem like 2 years since her funeral.  I was going to go to the cemetery today but the weather has knocked that fully on the head.  I am sure if she is watching from above she will understand.  But in my mind my mam isn't there, she is in the places I go, home, work with the dogs. 
After Thursday's aromatherapy, which for the first time in ages I fell asleep on the couch, I felt totally relaxed so when going to bed I thought I would have one of those wonderful uninterrupted sleeps.  Instead I visited the bathroom at least 4 times before 3 am and then I couldn't keep warm, I again felt like my breath just wasn't getting into my lungs.  This cold during the night can really set our breathing erratic.  I woke hubby as I crept next to his body to get warm, which then caused him to find it hard to sleep again.  I wonder why this happens?
I have noticed that since dropping the morphine by 20mg per day I haven't had any other pain so am deciding on dropping it again, less morphine helps the liver produce less bile.  My pains haven't been as bad, a couple of heavy chest pains but I am sure that is the hernia problem rather than the meso problem, after all I am stable and will remain so for as long as my body can hold back this rotten cancer, in my mind that has to be a couple of years.  I read about people who have had maybe one or two treatments to combat mesothelioma over a period of 4 or 5 years, whereas I have had far too many and not enough remission in between, therefore I have told my body that this time remission will last for years and it had better not let me down.
In the USA a couple of gatherings are happening which bring together specialists from all over their country to help find a cure and discuss trials that are taking place.  In the UK we have one meso care day and one action day.  We don't have full on access to specialists who are willing to talk one to one, maybe Mesothelioma UK could incorporate something like that into the Carers Day in October.  But more so it would be great if we had specialist centres for Meso up and down the country. 
All this carry on over shutting childrens heart surgery down around the country is ridiculous, why should families have to travel more than a 50 mile radius to get the best of care.  I thought in this day and age things were improving but it seems the health service is sliding backwards.  They say it is better to have more facilities at one hospital than have two smaller units, I say they should think about the families and travelling to such facilitis, especially baby units.
For those without Kindle and who would be interested in reading my book and helping charity please have patience, I am looking at getting it printed to sell on the blog and hopefully Chris will also sell them on her site.  I am still in shock that hubby wants me to write a proper book on my journey with meso, not just the short pieces I put on my website.  This may be hard because I would then be writing all the emotion we went through, the struggles of being alone back in 04 without the help we have today and of course, opening up old wounds that we put behind us.  You see I march forwards and try not to look back as much.  I guess I will see how I feel and who knows may put words to screen (not pen to paper). 
It was wonderful news to hear Steve has had further reduction and is now stable, he managed the full course of his chemo and I hear the champagne went down well.  I hope if you are on or having treatment right now you will benefit from the same results.
I am hoping that Nancy will do another article for me shortly, it will be on lawyers and their role in helping mesothelioma victims receive claims and how to stay away from ambulance chasers. 
On that note, have a good week and stay well.

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