Good Friday

The wind has blown itself out it seems looking from the window out into the front garden.  I don't know how cold it is, I have lit the log fire to keep my feet warm and help stop the drafts that come down the chimney and under the doors.

It's good Friday and but what I don't understand is why Easter gets moved so much, why can it be late March one year then late April the next.  I remember being taught about it but still surely the church could come together and pick a date that could be near static like May Day!

I had writers block on Wednesday but Thursday afternoon another chapter raced across the screen, I wonder if I am putting myself under too much pressure.  It would be good to have the second book ready for kindle as I get the first one printed but that is a tight deadline.

I had a lie in this morning, well till 8.30 and my stomach is certainly let me know the bile sat there for too long, I truly wish I could have had my stomach put back in place.  The thought of having chemo is in the back of my mind, to think once it starts working out of the system my bile is going to bring it back up into the stomach and throat before I finally dispose of the stuff.  Not a nice thought really, because of the toxins within the chemicals it will make the bile that much more painful.

I know the last thing I should be thinking of is chemo, I am still in the stable state of meso but it is a worry that stays in my thoughts.

I had my last aromatherapy yesterday for quite a few weeks, my therapist and friend is having her hip replaced today.  I hope it goes well, although she isn't being knocked out.  I don't think I could stand it watching someone breaking a joint in my body and then forcing a ceramic replacement in.  I do hope she manages to drop off to sleep with the help of some sedation.

I read that another person was diagnosed recently and once again told that chemo would only give him 4 months of extra time and wasn't worth doing.  Come on doctors no one knows for sure how long chemo gives any certain person.  If these oncologists took the time to get involved with the charities that understand chemo they might find out that people with meso react differently.  It makes me wonder if we have come any further forward in the last 10 years. 

Our hols aren't far away now, and as much as I can't wait to get into some sun, well hopefully some sun, I just can't be bothered either.  I feel down, just can't seem to pull myself up from whatever it is that is making me feel this way.  My aches and pains aren't any worse, although my 3rd boob has been playing up a little.  But surely this can't be affecting my mental state of mind, I've put up with a lot more pain than I have right now.   I think to add to my list of meso I will add SAD, am sure that's the problem.

Well that's it for me today, I hope you all enjoy Easter and if out searching for those eggs, find them. 

Nice Gesture

Not having a publisher to help push the sales along it was really nice to read an article about my book and Chris Knighton's charity on an American Website.

Please have a look here  to read the comments, pretty nice to when even Chris gave a short interview

What better person could we have as an ambassador than Jan, a true mesothelioma survivor, and indeed it is us at MKMRF who are humbled and honoured to have her on board,” said Chris on naming Jan ambassador.

Read more: http://www.mesotheliomahelp.net/blog/2013/03/mesothelioma-survivor-jan-egerton-pens-book-to-raise-research-funds#ixzz2Oj9Sb4T1

I have a couple of mistakes so spent yesterday trying to correct them only to find that I can't reload the book but have to down load and amend.  I had changed my own copy and reformatted the entire document so all those errors I had found originally I have no record of.  I had nothing to compare it to that would make life easy, re-formatting made the new compare a difficult tool to use instead of an easy one for words.

Enjoy the downfall of snow, after getting the heating back up and running on Monday, being an old property it took till late yesterday to start warming up.  Looks like we are back in for a cold spell but I need to go in the office, would rather hibernate with my log fire!

I'm Cold.....

Of all the times, and as usual when the weather is at it's worst something happens to our heating, this time though its down to us, we didn't check the gas oil!

 

I am freezing, the electric fire I bought for the kitchen because the 2 radiators in there aren't powerful enough to keep the room warm,( in fact one doesn't even heat up!) has died a death.  The electric fire in the lounge is loosing the will to live, the cold air is whistling down the back of it and blowing more cold than warm.

 

We have the coal fire lit in the office, thankfully we had some coal brought down and am I pleased but hubby doesn't understand that once I get cold no matter how many layers I put on I don't warm up.  Changing from one room to the other makes me feel worse.  You have to pee after all!  We only have two rooms with any heating in, the lounge and the office.  I am thinking of packing my things and going to stay at my mam's empty house, although I think I would spend the night in tears if I did.

 

I am dreading going to bed, the wind is whistling through the walls up there!, by you certainly realise how poor insulation is when you have no heating and its windy outside.

 

What makes it worse is hubby is still in a short sleeve shirt walking around, he doesn't feel the cold, to be honest I never use to until I took ill with meso, now its a major issue for me.  It sets my bones aching and my meso seems to come to life.  I guess because I huddle into myself.

 

The dogs have had their runs out, I feel like I have just looked at a computer screen all weekend, the weather hasn't been kind to any of us.  This time last year it was at least 10 degrees warmer, the dogs don't seem to mind it, in fact Bear keeps eating the hard snow that is scattered around the garden.

 

Am working my way through a few typo errors in The DreamWeaver's Choice, to be honest I had forgotten quite a bit of the story so its nice to refresh my memory, especially as I have written quite a lot for the next one.  Some things in the first book obviously carry through into the next one.

 

I understand that Mavis received an award for her work with awareness from the USA organisation ADAO, well done Mrs Nye, spreading the word is important, if we can help stop someone today from being involved with asbestos it could save their life.

 

I was wondering the other day if asbestos that has been disturbed is why it is more dangerous than when our parents worked in it.  People today are being diagnosed a lot sooner and younger, no longer is it a man in his 70's, people as young as 20 are diagnosed, ok only a few, but still it is far too young.  Let us hope that asbestos will be banned in every country and that we don't just send it off to Asia for them to dispose of it and cause a major outbreak there in the future.

 

Well my fingers are frozen so I will call it a night, I hope that where ever you are you have warmth, remember to check your gas oil if you survive on it!

Where do they come from?

I am pleased to say that someone recently has written about cryo-ablation and maybe it's use on mesothelioma.  The article can be found here.

 

The article has been researched by a thoracic nurse who writes for one of the websites that try and find out as much information on mesothelioma treatments.  The website does have a lot of interesting information

 

http://www.mesotheliomahelp.net/

 

I think everyone knows that I am advocate of cryo, it does less damage to the tissue in the lung than RFA, which we can have in the UK, but only only tumours less than 2cm.  I still can't understand the fuss why this can't be used more often.  Maybe we don't have many Interventional Radiologist in this country or is it because it doesn't cure, but lets face it chemo doesn't cure either.  I guess this also brings us back to the argument for Prof Vogl and his treatment too. 

 

I have found that numbers are growing in diagnosis than ever before, if asbestos has been banned for so long then where are all these new cases coming from.  DIY is all I can think.  Our fathers worked in and with asbestos back in the early 50 and 60's, but today you find cases as young as 20 year olds being struck by this cancer, either the dormancy period has altered or the asbestos acts differently when broken by DIY.  I wonder if any of the researchers have thought about that.  When used fresh does it have a different effect to when it has been laid for many years before being disturbed?

 

I have been given a tip off that my book still has a few typo errors, not as professional as I would have wished.  The more you read the same info the less you see the errors.  I have started again to read it myself and have found quite a few.  Obviously I am disappointed but at least I can correct them before it book goes to print.  To be honest I am half way through the second one, and although I haven't sold many at the moment I hope that in time to come both will do well and help the cause for future mesothelioma patients.

 

As holiday time is around the corner, insurance is the buzz word again at the moment, having mesothelioma isn't always easy to get a decent cover at a reasonable rate.  Once Gary and I were quoted £12,000 to insure me, it was cheaper to cancel the holiday last minute, so from then on we only had my luggage and other illness covered and that still costs around £275 per annum.  I have heard that MIA is fairly reasonable, but I guess until you actually start giving out your own details that's when you will get the cost. 

 

Holidays, not long till some sun on the cruise!  Although it's Easter next weekend, I can't believe it.  When I was young I remember we would go on bus trips over Easter then when my eldest brother could drive he would take us out.  I can't remember the weather always been cold like this. 

 

Today is my last aromatherapy for at least  weeks, my therapist is going in for a new hip, I hope the operation goes well and that the hip is a perfect fit.  I know I will miss my treatments, I would advise them to everyone, but I will also miss the chats we usually have.  Now she won't have an excuse to say she hasn't time to read my book!

Under The Weather

Hope this week is better than last, the weather put me off going into the office quite a bit but more so was my damn stomach.  Whether its because I know what is causing it or whether it is just getting worse I don't know.

 

On top of everything else we have both had a bug, the one that makes you rush to the loo!  It isn't much fun feeling crap to start with then having additional low stomach pains too.

 

Although I've was at home most of last week I've scarely been on face book or blogging, I am in one of those I don't know what I want moods.  Stupid really as we have been given such good news I should still be high on it, yet I feel so down.  I guess my stomach problem is to blame for this feeling, if I could just have one morning where I woke up feeling good it would make all the difference.

 

It is annoying as I have no pains from the meso that are getting me down, I would be Normal if it wasn't for this blasted stomach, sorry I am going on and on a bit but I just want to be normal!

 

Reading my fellow bloggers, Ray, Mavis's sweet husband, has had a couple of heart attacks, which came to a shock to us all, Steve had wonderful news and I hope he and Linda are now living the high life, although still recovering from the chemo after effects, Debbie isn't well and holding back chemo and Ray has been quite breathless recently.  We all live and deal with mesothelioma in such different ways, I guess as a small handful of those we represent we show a broad spectrum of what life can be like.

 

Mine at the moment is moan, moan and moan!  I wish I could have the courage to try surgery as I am sure my quality of life would be improved but I am so worried that the meso is pulled into my abdomen that the QoL would be short lived!  I do hope that when we board this ship end of April the movement makes my stomach feel better, who knows all those waves could make the bile exit the correct way instead of trying to come into my throat!

 

I can see why only the brave try to have their own books printed, what a carry on when dealing with printers and getting IBSN numbers.  The one good thing about doing it myself is no agent will be taking a fee at the end of the day so that means more goes to the charity but then printing is an expensive layout when you have your first order of books.  It's not that I know I will sell hundreds so I can't order a mass amount that will make it cheaper, apart from that I need to think of storage!  Obviously the bad thing is no publicity either, which then means less sales.  Its a no win situation.

 

I have spent some of my miserable week working on the second book of the series, trying to keep my mind off the loo.  I hate wasting a day in front of the TV, to me that isn't being alive, but then sitting in front of this damn computer isn't one either.

 

I need to go into the office today, yet looking out at the cold and the wind I wish I could just hibernate for a few more days! 

 

Hope spring arrives soon then summer shortly afterwards.

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.

Honoured

I wrote "The DreamWeaver's Choice" with on thing in mind, it was something I had always wanted to do, I think most people have a good book inside of them, but if I could do one and finish it then the money would go to Chris Knighton and her amazing work at MKMRF.  The tissue bank is what drove me on when I had fears about the characters or would the storyline come together.

 

Mavis asked me why vampires, all I could answer her with is that meso has tried to suck the life out of us and I guess our life of battling is as simple as that.  We want to ensure the good guys always win, so the Tissue bank in this case is the good guys.

 

Another thing about the charity is that every penny raised for MKMRF actually goes to projects, not to paying people to ring for donations, not to keeping some fancy office in London, but to help people like you and me.

 

When I told Chris I had finished the book and would be donating the proceeds, after costs Chris couldn't believe it.  I have since been asked to be an Ambassador for the Charity, I have no idea what this actually entails but if it means writing another book to get some funds in I don't have an issue with that, unless of course the books never sells. 

 

For more information on The Mick Knighton campaign you can find all the information here

http://www.mkmrf.org/ help to keep the tissue bank and various other projects allowed and donate.

 

I would like to thank Chris Knighton again for her faith in me and I hope that I can make a good Ambassador for the Charity.

Todate I have sold 5 books, 3 in the UK and 2 in America, I hope these 5 people enjoy the read and leave some positive comments.

The DreamWeaver's Choice

Today my book was finally loaded on to Amazon, it will probably take a day or two to become available but here is an intro to it.

The DreamWeaver's Choice

I hope you will download it, each sale gives a percentage of the proceeds towards helping mesothelioma via the Mick Knighton Mesothelioma Research Fund.

The book contains horror, commerce, the spirit world, a love story and of course Bear!

Top purchase please follow this link     for UK http://www.amazon.co.uk/dp/B00BNUF448

                                                               for USA http://www.amazon.com/dp/B00BNUF448

Update on Blogs

Once again I have had a quick interview posted on a blog, it's nice when you get invited to do something like this, people who don't have an insight into living with mesothelioma can read about someone who is going through it.  If you want to read it you can find it Here.  I know that I have given free reign to quite a few guest articles and I believe they bring something different to our everyday blogs.

For those who don't blog but want to let others know about the events that have happened while living with mesothelioma Linda Reinstein is putting together a book, together with sharing your stories on line at ADAO.

Speaking of Books, my book cover finally came, the artist David Byrne, (No not that David Byrne!)has done a wonderful job at creating the images and his pencil drawing of our Bear is fabulous.  Funny how I've used our Bear as a central character, hubby told me that I wasn't allowed to make him a bad guy, would I!  So today, with the help of another friend of Liz's, the book should be up on Amazon.  I truly hope it sells a few, more so because part of the proceeds will be going to Mick Knighton MRF then hopefully a big chunk of it if the book sells.  I would like to have a few printed so that I can feel the achievement in my hand.  Writing a fiction and bringing the plots together isn't as easy as I thought so never again will I criticise when writers forget something that was important in that chapter but never mention it again.

 

The sun is actually shining this morning and although I promised my brother I would go into work this morning I think I will instead be taking the dogs with hubby over the fields.  A bit of bonding time required as they only see me at the moment as the treat lady.  Every night I get the paws and the looks so I will either give them a rodeo or a shape or bonio, my knees are all marked from their claws. 

 

So a busy day ahead better get by body into the shower and get those dogs out, trying to follow the instructions on Amazon regarding formatting lost me off so I guess a clear mind will be required for this afternoon.

 

To all the warriors out there at the moment battling health issue's I hope they are resolved quickly and those on chemo, my fingers are crossed and prayers are with you.