Tuesday, 29 January 2013

Guest Articles - Pacific Meso Centre

Over the years I have had a couple of people post articles on my blog.  This  is the first of hopefully 3.  I hope what you read will be able to help you if you live in the USA.

My name is Savannah Cline, RN, BSN. I am the medical liaison for Pacific Meso Center at Pacific Heart, Lung & Blood Institute (PHLBI) at the Pacific Meso Center (PMC) which is located in Los Angeles, California.  Prior to working at PMC, I worked as a Registered Nurse at Children’s Hospital Los Angeles on the Cardiothoracic Intensive Care unit.  You can find my full bio at www.pacificmesocenter.org 

My role at PMC is to serve as an indispensable resource for mesothelioma patients, as well as their families and friends who are searching for information and a better understanding of mesothelioma as a disease.  I provide education regarding the most current treatment options, risk factors, symptoms, diagnostic testing, screening, available patient and family support, clinical trials as well as possible future therapies and advances surrounding mesothelioma.  Check out my weekly webinars covering topics such as what to do when you’ve first been diagnosed, how to find the right doctor, knowing the warning signs for mesothelioma, etc. I will also be putting together a series of “Meet the Experts” that will cover cryoablation, sarcomatoid treatment, understanding your pathology, etc.  One of the best aspects of my job is that I have direct access to our scientific and medical advisory board, which provides me with the latest information on clinical trials and up-to-date treatments.

Our scientific advisor, Dr. Robert B. Cameron is one of the leading experts in North America on the treatment of pleural mesothelioma.  Dr. Cameron has treated hundreds of mesothelioma patients over the last 25 years.  He is the innovator of the lung-sparing Pleurectomy/Decortication surgical procedure for mesothelioma and believes in saving the lung, removing as much of the visible tumor that he can see and treating the patient as though they have a chronic disease.   
PMC at PHLBI was founded in 2002 as a 501(c)(3) non-profit research institute, focused on finding better treatments for sufferers of malignant pleural mesothelioma, which is an asbestos-related cancer affecting the lining of the chest – the pleura. 
PMC’s mission is to better serve a growing number of mesothelioma victims by supporting the first-of-its-kind in the nation research lab which provides laboratory-to-the-bedside research that improve mesothelioma victims’ lives and longevity, particularly for those that approach malignant pleural mesothelioma (MPM) as a chronic, treatable disease.

We currently support 2 research labs.  The Punch Worthington Lab. at UCLA and PMCs laboratory at 10780 Santa Monica Boulevard, near UCLA.  Our team of scientists are dedicated to advancing the treatment of lung-sparing therapies for malignant pleural mesothelioma.

At PMC, we are able to offer numerous resources to patients, family members and friends.  Some of our resources include: The First Meso Connection Program, Mesothelioma: A Patient’s Roadmap, educational materials, and patient information packages to help navigate this journey.   In addition to these resources, we are able to help those patients from out of town find suitable accommodations close to UCLA and help with travel arrangements.  In some instances we are able to find free accommodations for those suffering financial hardships. 

We are in the process of developing online support groups for mesothelioma patients, survivors, caregivers, family members and friends.  For those who are interesting in participating, please contact me for further information.
I am very excited to be part of this great institute and to furthering our research so that we can make a difference in the lives of those suffering with this dreadful disease. I realize it can be devastating to be diagnosed with mesothelioma and I am here to help as much as I can. Feel free to contact me at any time by email at scline@phlbi.org or phone 310-474-8223.

Pacific Meso have issued an invitation to everyone for:

Official Opening of our New Laboratory
Wednesday, February 13, 2013
Open House from 1:00 p.m. - 7:00 p.m.

Please join us for guided tours of our new lab. Come and meet our scientists and hear about their innovative research on mesothelioma. Food and refreshments will be served.

current logo
Underground or street parking
10780 Santa Monica Boulevard, Suite 101
Los Angeles, CA 90025
(If you have already RSVP'd please disregard this invitation)
About Us
The Pacific Meso Center at PHLBI is a 501(c)(3) non-profit research institute focused on finding better treatments for sufferers of malignant pleural mesothelioma. www.pacificmesocenter.org
Free Phone: 1-888-996 (MESO) 6376

Sunday, 27 January 2013

Insomnia again!

It is distressing when all you want to do is sleep, it's only midnight but to me it's already 2 hours into my normal sleep pattern.  I hate not being able to drift into that comfort zone called 'out for the count', the dogs are snoring, hubby's snoring, my eyes are tired but my brain is alive so here I am again up but thankfully without pain.

I am wondering if the last week was a session, I have been left with that dull ache back in my left armpit, the best description of its location, or is it because I have gone back to 2 omperazole at 9 pm instead of 1 at 6 and metrocloprimde for bed, which ever way I am pleased the pain has subsided.

I am getting myself lost off with this project of creating our life together, each program wants to keep importing files so I am ending up with folders and more photos.  Adjusting some in Lightroom to find they don't change them on the hard drive but only virtual, elements keeps importing and creating folders and God knows which one to use to make a slideshow to then mix with the video?  Honest, writing my book was easier!  But I am one of those people that has to have it right too, so I will keep going over and over the same part until its near perfect then think Oh I can change that, it could go on forever, but forever I don't have.

I came across some pics of when I was in my late teens and early twenties, I always classed myself as an ugly duckling, my mother always told me I was and my brothers agreed.  I have never had any confidence or self esteem, I spoke quietly too so people tended to ignore me when I was younger. in fact I guess you could say it's still the same today. Looking back at these pictures,  which have been boxed away for some 20 years I was shocked how I looked.... Not the ugly duckling I perceived myself to be.  Too late now though I can't go back in time and tell myself I can be confident.  I wonder what would have been different if I had realised I should have been confident?  Hopefully I would have still married hubby but I guess there would be no escaping having meso, that seed was planted to early in my childhood.

It is pouring down and blowing a storm here, Bear has decided because I am up he should be allowed to go back out and sit in the rain, well he hasn't got a cat in hells chance, although my knee is getting some damage with his paws instead of the door.

Well guess I should try and get my head down again, the hot chocolate is finished the room is cooling down and I don't want a chill.

I know that part of the reason for not sleeping is because I have spent most, sorry, all day on importing and trying to put this project together.  Foolishly I have started with our wedding, it may be better to work backwards instead, but then what's interesting in cataloging the last 8 years of hospitals and surgeries, chemotherapy and everything else that goes with cancer!  I want to leave happy memories for the times that he may need to remember me.

On that note I think I should go, otherwise tears may start to well and I can't have that, there's plenty of time ahead to get weepy.

Good night to my time zone, good morning to yours....

For some reason iPad works differently when blogging, have been taken into an old post back in march 09, 8 weeks after my major operation, if you have gone through surgery it would be interesting to see if you felt the same or if you're going for it have a glance over it. (That's if you're interested!)


Thursday, 24 January 2013

Silly o'clock

Here I am at 2.30 in the morning sitting downstairs in the still of the night instead of being cosily under the covers in bed.  Why is it that the worst pains always seem to get you through the night or is it that we haven't anything on our minds so it butts in like an unwanted memory that just won't go away?

Before bed I took additional morphine in the hope that I would get an uninterrupted sleep but at 1.30, I guess the moment I turned over, my pericadium pain pounced on me or should I say woke me from a deep sleep.  Lying there in the dark does nothing for us when our minds start, it's those questions:

   Will I still be here next year?
   Is it growing or just my body getting sensitive
   Is the morphine becoming a normal commodity that I need more to reach the same level of pain

I know the answer in my own head, the fluid has returned, but do I truly want to voice this, if I do does it make it true?

Each day we hear bad news and very rarely do we hear the good, the I'm stable or shrinkage achieved, why can't I have had that news, why did the body have to have a chemo's fallout, what have I ever done to make 2 rechallengers not be successful?

Hope the cocoa works as I really need some sleep, maybe another 20 mil of morphine might ease the pain but I really hate having to take extra, that would bring it up to 60 in less than 5 hours, I know I have done more than this in an hour prior surgery but I was meso'ed up then.

Time to close down and hopefully my brain will follow suit for the night.

Sunday, 20 January 2013

Staying Warm

We should get use to the cold, but normally in the UK its wet damp cold not freezing air cold.  Again after spending most of the day inside I was tempted out to see hubby's masterpiece.  Yes another snowman!
Just as I came out the wind seemed to pick up speed again and the snow started dropping.  My lungs hated it, although I did stay out a little longer yesterday, enough time to throw a few snowballs for Lexi and Bear.  I felt like Scott from the Antarctic in hubby's coat.   I could hardly see anything in front of me without tipping my head some 90 degree's backwards.  My upper body was so warm but my legs were freezing, not to mention the only bit of my face.
I have finally installed the electric blanket onto the bed, having spent ages deciding which one, as he's hot and I'm cold, I went for one which said it had individual timers.  Yeah right, one of the most expensive turns out to probably be the worst.  I thought you set a time for it to come on, but no, its 1 hr or 9 hours on time!  Which means you still have to do the stairs to turn it on before bedtime!  The programs, different temperatures but it doesn't state them.  A little annoyed but it will have to do.  Although it is suppose to be a mattress protector type too I have ended up putting my mattress topper over it, I could feel the small cables digging in.  It still worked, last night I set the temp to no 4 for an hour hoping the bed would be toasty (my side) but it was just warm so I had to put it on no 6 while I waited for hubby to come up.  I would never sleep with a blanket turned on though.

Hubby was late coming up because Bear decided to throw up just as I came up (Thank God I missed that), he had been eating snow outside which obviously upset his tummy.  What is it with dogs and eating snow!

Have also been naughty these last few nights, have found a nice little white wine that I like and have quite happily drank a few glasses each evening, not a habit I hope I form, but it has been nice instead of drinking tea every hour.  I have also reduced my stomach tablets, they are making me constantly hungry, especially during the night.  Will have to monitor this as depending on how I cope with them depends partly on what will happen.  They are still giving an added extra to my already installed headaches.  Gosh it must be great to be healthy, something that I really envy.

We watched Trevor MacDonald and the Death Sentence Prison last night, these people killed others and say how hard it is to live with a death sentence over their heads, they should try living with cancer that is terminal.  Ok they are locked up 23 hours of the day but some people with terminal cancer and stuck in beds for months on end, can't eat, can't get comfortable etc.... These guys have TV's, can move around, don't suffer with pain, most not even guilt for what they have done!  Sorry, just venting at the injustice of it all.

For those not on facebook, the numbers of mesothelioma seem to keep rising, everyday at least two or three people are connecting to the groups for support, we are also losing people on a daily basis too, what is taking so long in finding something to keep us alive.

I am worried again that the chemo may have upset my meso and set it off from being slow to fast, new pains crept across my back last night, more so in the right, I hope and pray those 3 tumours don't grow in their.

On that cheery note I will end the blog, the snow looks pretty, the birds are pecking at the food but the wind is up and I for one will be sat in doors today.  Hubby on the other hand has the pleasure of taking the mutts over the fields, I must admit rather him than me on a day like this.

To my meso friends stay warm, keep away from the bugs and don't breath in this cold air.

Friday, 18 January 2013

Hard going

Having worked at home for 2 days to stay warm, I was bribed by hubby to at least get some fresh air.  I really didn't want to leave the comfort of my office with the logs spitting and crackling, the warmth reaching my feet and keeping them toasty!

When Bear saw hubby in his outside coat he went crazy, bouncing up and down, he didn't even check to see if his mam was coming too, feeling unloved by my big boy at the moment.  I pulled on my boots and off we all went into the garden.  I stayed out long enough to have a couple of photos taken and throw some snow at the dogs.  Although my body was toast my breathing was hardwork.  The air took the hairs off the back of my throat.  I think outside would be like being in the artic although it is 20 degree's warmer.  The snow in this weather doesn't stick to Bear's coat like the wetter warmer weather snow does, at least that's one bonus.

Hubby went to get the camcorder to video the dogs only to find, yes, this battery was flat too, not having a lot of luck with the batteries lately.  Yesterday he rang from the fields to say he had left the battery for his camera charging and forgot to check! 

Still having problems with loading photo's having to use g+ to load the photos into cyber space, I do hope they fix this problem, as I keep loading photo's and then they disappear!
I wish me and technology could get on a little better. 
On a different note the girl who is designing the cover for my fiction novel is about to finally start it and the proof reading is finally complete, I have a few errors to correct and then hopefully will get it loaded on to Kindle.  My hope is that I can raise some money for MKMRF and Mesothelioma UK, both charities support and do so much for mesothelioma.  I know that to keep the tissue bank open MKMRF will need a lot more cash over the next few years, so if you like vampires, ghosts and Bear I hope you will order the book.  Nothing like a little self publicity!

Hope you are all safe and warm, in the home you want to be in not stuck in a motel somewhere, and if you missed your flight to warmer climates I hope you get there tomorrow.

Wednesday, 16 January 2013

Cold Weather Dog's Delight

After major surgery in 2009 I wrote my first blog about it, for those who never read my blog then here is the link


Sometimes it nice for us to go back and read what we wrote, remind ourselves of the fight and the struggle we have gone through to still be here today.
Unless you have chest problems you can never understand what it is like to be unable to breathe in the cold.  I remember my mam saying "I can't get my breath" but not understanding what she meant as she was there telling me and showing signs of breathing.  I certainly understand this sentence now, especially in this cold weather, although the crisp cold is a lot better than the damp cold, don't know why, but it is.
The change in room temperature can affect our chests, stepping outside into 0 degree's from our nice warm homes is a pure nightmare.  Scarf's kept close to our mouths and nose's we look like we are out to rob some one.
On a bright note it was a fab day for some photography, not that I went, oh no I had planned to work from home this morning to discover I had arranged a meeting at 10am in the office... not a happy bunny after I had lit the fire and was looking forward to the heat toasting my feet under the desk.  So as I headed to work hubby and dogs headed for the fields.
Lexi is confused, a rabbit saw the dogs and took off ahead of them, disappearing down its hole, it popped its head up once then disappeared altogether.  Lexi was left wondering where it had gone.

They both decided a time for rest was needed, hubby said they had a good play fight in the snow, wish I had been there to see them, sorry the snow has blown out a bit trying to focus between black and white is quite hard.

My favourite of today is this, the tree looks like something from a fairytale book, it isn't, its real.  I was surprised how many prints were on the ground, so many animals must have been trying to find food or taking cover in the woods from the snow.

It does look beautiful though, everything so white and the sky so blue, we never get such blue skies in the summer.

As for me, well I spent the afternoon at home, I did bring a file of work home to do but the fire was still flickering a little, so I decided to have a quick tidy out of some of my paperwork at home.  Instead of throwing things on the fire I kept reading bits of the information I had kept to do with mesothelioma.  You would be surprised but some of my research goes back to 2004, when to be honest not a lot was published on mesothelioma.  I even found the first Cancer Backup book I was given on Meso, it covered pleura and pertioneal but no mention of pericardium, they didn't seem to think it affected the heart area at that time, probably why I had such a tough time getting the oncologist to realise it was the mesothelioma that caused my heart attack like pains.
I found research information on Velcade, Prof Fennel was running a trial in Belfast for it, information on Prof Vogl from 2007 or 8, information on Vitamin C, even then they were sure that the use of Vit C was a good cancer fighter, Mistletoe was also the no 1 alternative treatment then.  Another article on alternative treatment that had to do with herbs.  Information on a trial drugs that I have never heard of since.  Maybe it would be a good project to find out whatever happened to the drugs that fell by the roadside.  First though, I must file these papers into some sort of organised order, I ended up bundling them all back into the 3 lever arch files and a couple of folders.  The clock ticked by faster than I could read.  I also found a really old Mesothelioma UK newsletter, and Chris Knightons first ever published article in the Northern Echo.  Nostalgia!
Tea is nearly cooked, the dogs have had braising steak and gravy, we had cooked them lamb chops as well but I think the beef was enough, we are having chicken rolled in various breadcrumbs, hope they are nicer than the curried parsnip soup I had for lunch - curried tasting water the colour of parsnips - pleased I had some fresh bread on the side, the soup went down the sink after 4 spoonfuls.
If you are going out in the cold please remember your scarf, ventoline and plenty of warm clothes, tissues and don't be out too long, a chest infection in this weather is certainly not want we could do with.
I hope you are enjoying the snow, even through the window and don't forget to put some seed out for the birds.

Monday, 14 January 2013

4 Years On from Surgery

The snow arrived late last night, Bear was the give away, bashing on the patio door to be in, his coat covered in white flakes.  The weekend flew by but not in the way that I expected.  Saturday I spent a good 3 hours grooming my baby Bear.  It isn't an easy job when he only allows you to do ten minutes at a time and the minute you find a tatter in his hair he's up and off.  Chasing him around the room gets tiring!
Sunday the sun was out and I was sure it would be a good day for a nice walk over the fields, how wrong could I have been.  The moment I stepped out of the car I started to cough, the air must have aggrevated my warm lungs.  As we walked across the first field I had to take some ventoline, which I hate doing, just to catch my breath.  I think the dogs took a huff as we only got part way down the second field and common sense made me turn around and head back to the safety of the car.  Although the walk back was as cold, with my scarf held close to my mouth and my head down I managed to get back without further coughing.  I was disappointed though as the sky was blue!  I hate having things close to my face, maybe it's a fear of not being able to breath that makes me feel this way.
The afternoon passed annoyingly.  We have all these super duper programs for digital cameras, lightroom, CS5 but could I do what I wanted and start a new project.  I want to create a slide show of our time together plus a scrap book that can be played on the TV, I guess like an ebook that retailers use these days.  Three hours of frustration, yes you can make a slideshow in lightroom but it sorted the pictures its way and not the way I wanted them.  Then in CS5 it does it in MB, but you can't add blank tiles to create text!  So I decided to download Photoshop 11, oh no more problems, 64 bit and the screen was non to helpful.  You need this but alternative download is this, which one??  As it happened I choose the wrong one, 3 hours later and its still downloading, so I binned it and started again.
It was only this morning when I realised the date that I thought wow my rebirth from meso is tomorrow, 4 years on.  I am grateful to this extra time and only regret the meso came back and I just can't get rid of it.  During the night the pain in my bottom left ribs was disturbing my sleep, I woke up and tentively touched them, they were sore as was the muscle to my abdomen, I hope this isn't a sign of something sinister going on.  The heart pain is becoming a normal pain, ie its there all the time but my brain is getting used to dealing with it.  My boob has decided to do that nipping sensation again, so I fear it may be back on the growth pattern again.  But, and its a nice but, I am still hear to moan about them!
I bet most of you think all I do is moan, but honest I don't, I just let it all out on here and occasionally with others.  The release sometimes of getting it off your chest is good, we have enough going on in our lives and to bear all we feel inside doesn't do us any good.
Is anybody else having problems with blogger, it keeps loosing your post part way through and you can't load photo's.  Technology is driving me nuts at the moment!
I am hoping to go to the Bond Night in Derby to see Mavis receive her award.  Hubby is, of course, not interested in going, I have tried to tell him it isn't a cancer night, it's an industry night which just happens to be awarding those who have spread awareness about mesothelioma.  I wasn't intending on going when I heard about it last year as I assumed, wrongly!, that I would still be on chemotherapy.  See you should never count your eggs as my mother would say.  I have to get my backside in gear if I want to go, but also need to find out who will go with me. 
Life always brings some problems with it.  I also realised today that its 13 years since I miscarried.  I am a strange person in many ways because as things happen I tend to get over them and move on, except with meso because it just won't go.  But every now and again the loss of a child, even though I didn't bear her, hits you hard in the heart.  She would have been 13 this summer, the start of the teens.  I try not to play out the if's and but's, how different our lives would have been had a child been involved.  As hubby reminds me occasionally, it would have been awful for a young child to witness some of the sessions I went through prior surgery.  It shows how strong several of our Meso friends are, Debbie has brought up her son, Heather was a new mum.  But we are human and in many ways we tackle what we have and just step into it, deal with it and move on. 
I can hear the pressure cooker releasing steam, dinner will be served in a few moments so I guess its time to log off. 
I hope we can all step into whatever is going on with our lives and deal with it, it would be nice though if we were all stepping into happiness right now, I certainly wouldn't want to deal with it I would want to wallow in it for a long long time - stay well.

Saturday, 12 January 2013

Life and Mesothelioma

This week has been long and hard, I know a lot of the mesothelioma community has been knocked by the death of Cher, although never meeting her face to face, I and many others felt like we knew her so well.
I have been honoured by Nancy from Mesothelioma Help, she has picked through my blogs and wrote another article about my life.  The link below takes you there but you can read about other people on her blog as well as news on treatments:
It has been a long week at work, can't believe I have only been back 5 days, it feels like months since Christmas was here.  By Tuesday night I was flagging so Wednesday I worked from home.  Bad really as I spend more time in front of the computer than I do when in the Office.  Thursday I had two appointments on the evening, one with Prof Murphy, a wonderful Heart man, he has such beautiful bedside manners and is perfect for his line of work, and Dr Vis, my gastro man.  As it turned out we were early and saw Dr Vis first.  He showed me the photo's of my throat down to my bile duct, in beautiful technicolor I could see a sea of yellow and orange, the bile that is gathering inside me, which during the night backflows from the bowel upto the throat.  No wonder I feel so ill on a morning.  Normally this would incur an operation to repair what he called the set of double doors in the duct, but due to mesothelioma and my false diaphragm surgery would need to be considered carefully.  I had to have a Barium meal to make sure food doesn't stick on the way down, unfortunately for me, Friday morning I had one, yes the bread stuck! I have a new regime of tablets to take - I hope they work as I will probably not be able to have the operation.  Quality of life just doesn't seem to go in my favour.
On a good note my heart hasn't changed since the last test, this means the fluid hasn't restricted any movement of the muscle.  Due to having the small amount of chemotherapy though he can't tell me anything about changes in the fluid, we will have to wait until I have 2 scans done so he can compare.  But, and there's always a but, long haul and medium haul flights are out at the moment.  If fluid isn't stable it can expand and cause a multitude of problems.  No Dubai or Bahama's for me at the moment.  My heart is pumping well, no signs of angina (which runs in the family), BP and heart rate were both good.  At least something is going well for me!
I was reading Debbie's blog and she is quite down at the moment, Linda & Steve have also commented on the thin veil of sanity we live under, a good read if you haven't as yet.  Fortunately for us our blogging is our release for our feelings, sometimes this can be unfortunate for those who read it!  But it is true when people always say "You do look well" do they want us to be grey, have tumours spouting out of our heads, stomachs, backs?  I sometimes feel like a fraud when people keep going on like that and feel the need to pull my top up and show my scars!  Mesothelioma has aged my by 5 years, my mouth now turns down instead of up, pain brings lines that we shouldn't have, and take the sparkle from our eyes.

On that note I must get in the shower, I have to head into work this morning so I will be missing facebook out.  This is my second attempt at writing the blog, the computer just lost everything I have written.  I do hope the weather brightens this afternoon as I would love to go over the fields with the mutts, feeling a little jealous as Bear is becoming more Daddy's boy than Mammy's, why, because he takes him out everyday!  Dogs can be fickle at times....
At least we are looking at holidays towards the end of April onwards, I just hope the med is warm then, I can't remember but it doesn't really matter as the weather is changing world wide.  When Greece was once hot in April and October it is now wet, Dubai had more rain in January than ever before and England, well what can we say!
On that note, time for a cig, mouthful of coffee and shower, I'll not get much done by the time I turn up that's for sure.
To everyone stay strong, easier said than done, don't let others get you down with stupid remarks and remember you are never alone with meso, as long as we can move we are alive.  Yes, we all get those dark thoughts but its Saturday and although my chest pain is annoying this morning I refuse to acknowledge it, hope you can do the same.

Monday, 7 January 2013


Many years ago I was contacted by a lovely lady in Australia called Cher, she was looking for new treatments for her mesothelioma but we became email friends and kept in touch regularly.  The first Christmas a beautiful painting arrived in the post, Cher had painted it as a symbol of hope for Mesothelioma.

Just before Christmas Cher and her husband renewed their wedding vows, the wedding photos were beautiful and the day a wonderful celebration.

Cher could no longer take the conventional treatments and before Christmas announced she would be living on will power alone, I didn't take it that the mesothelioma had become aggressive, just that she was like me, unable to tolerate anything but had a long way to go.

News came through yesterday that Cher was reaching the end of her journey and last night she passed away. 

At times like this I have to believe there is something more to life on earth, I feel for Cher's devoted husband and her family.

Rest In Peace Cher - an Angel in the making.

Sunday, 6 January 2013

Sunday Fresh Air Sunday

Waking up with a thick head and a heavy chest I thought I would end up with a nothing day, but I managed to make myself go out with hubby and the mutts and thoroughly enjoyed the fresh air.  It was cold but a dry cold, if that makes sense, and free from a strong breeze.  I did manage to lose the lens cap from one of the new camera's I bought hubby for Christmas though - Oh dear bad books!

I also heard some sad news today that knocked the stuffing out of me, a friend within my meso circle isn't well at all and it makes you realise how useless we all are when it comes down to it.  We can share our feelings or our anger but we can't do anything about the way our journey with meso takes us when all else has failed.  I only hope that if the battle is at an end it is without pain and suffering.

Another friend, however, has been in the UK for the festive season, coming over from Dubai they were all frozen.  In fact I am sure that they forgot how cold the UK can be.  I remember when I lived in the States how I looked at home through rose coloured glasses.  I would say what beautiful green countryside and sunny skies we had - see rose coloured glasses, we have the lush green but not sure about the sunny skies.

I spent most of the afternoon trying to work a problem out in Access, after reading a book on programming I thought I could solve an old problem, not a chance and all I got for my efforts was my headache hurt even more.  Hedex just hasn't lifted it, I even took two before I got up and had another hour's sleep.  I just hope it goes by in the morning as I don't fancy the thought of my first day back with a headache from hell that kills every time I move my head.

I had some lovely photo's to load today of the dogs but for some reason blogger isn't allowing them to upload?  I thought it would be nice to have an uplift looking at the dogs.
Yesterday I noticed Lexi was tilting her ear again, although now totally deaf, she still needs them cleaning but will she let you.  Every two weeks its a nightmare trying to get the juice in then the next night with cotton wool to clean them.  I even used Q tips today, what a load of wax came out but I had to chase her around the kitchen several times!  She wants you to clean them because she shoves her head into you but at the same time fights like a cat when you do.  It has become the same with brushing her, once over it was a joy as she would just lie there, now she moves everytime you empty the brush!  At least it is good exercise.  Speaking of which I think I will need to start doing some shortly, putting my weight back on has led to a couple of places where it has landed, mainly the tummy and also my legs, they look like tree trunks when I look down.  Its a few years ago since I went to pilates and then I had to stop because I was causing a lot of pain in my side, I don't think I can do sit ups either - maybe its time to drop the sweet content of my diet and see what happens.

On that note I will leave tonights blog, I hope that those who are waiting results get the Stable or Shrinkage word and those of us who are in no man's land stay there without further growth.  I am praying 2013 finds that something special that can create a terminal into a chronic illness.

Friday, 4 January 2013

Reading Good News

I am so elated for the news of Steve's treatment (Doing Something Positive) a shrinkage which will also bring about remission.  It is always wonderful to find out someone is doing well and that we can survive with this rotten, no terrible cancer.

As I am back to pre-chemo aches I am obviously so annoyed that my system was unable to deal with the 3rd line of carbo and premetrexed (Alimta) and I know the 1.5 measure I got did do something, but would it have lasted or would the results of the 07/08 still occurred, only 4 months remission?  I have to hope the meso hasn't reacted badly and decides to start sprinting in growth rather than taking a slow walk.
We don't realise how lucky we are when we lose a couple of pains but we remember them the minute they come back.  This is now a week since the heart region one has returned and stayed (infact it could be longer), and it is getting me slightly down.  I guess because it's a reminder that I didn't succeed in remission, although I do believe for those short 6 weeks I did get some changes, the fluid obviously drained away somewhere. 

We are still dealing with the unknown in many respects and lets face it many of our oncologists aren't really that interested in the in's and out's of mesothelioma because they will come across very few of us.  There aren't many with a passion for this terrible cancer.

My blog has been a journey of the pain and suffering that I have gone through, the highs of remission, the lows of facing death.  I have written it as honest as I can and I probably will continue in this manner through 2013.  It's my record to remind me of what I have achieved as well as what I have endured and to help me look back as life has past me by.  Hopefully for those who have followed the blog it has helped you understand that we can live past the 1 year as previously quoted and that although we may be with pain we still have life.   I have tried to enjoy each and every day, sometimes worrying that I don't do enough to make the most of life, but I have come to realise that even without a death sentence many people don't do anything special, life is normal.  We get up, go to work, come home, watch tv and go to bed.  Our changes are weekends and holidays, I am living a normal life.  I have vowed to do more this year, mainly because I am worried that it could be my last best year unless some miracle is around the corner.

Once the dust has settled and my normal life resumes (work etc) I will contact Hull and see about the ADAM's trial, but again should I hold back a bit or do it sooner?  These are the only decisions that drive us crazy living with meso.  Hubby asked why do I want to jump on the wagon again so soon, why not put meso to the back of my thoughts?  He thinks that prior to my scan results of last September I was in a happy place with meso, how wrong was he, he never reads my blog and until September we never really talked about meso. 

Which reminds me no date for the scan that was promised, shame they hadn't done it when he first said, after number two as it would have shown something good (in my mind anyway).  By the time the scan is scheduled I guess I will be back where I started pre chemo.

So today is my last on holiday, yesterday we took the decorations down, today I am going to visit a friend and hopefully get my draft book back all proof read so I can make the alterations and get the thing finally published.  I hope I find the time to write another fiction\fantasy book but I go through phases and I think my writing phase, like my house designing, has gone on the back burner.  My next project is to sort out a book of our lives for hubby, but will need to do that in secret! 
To brighten the day Woody called this morning to find some food, I love my desk by the window as I get to watch the birds, wish he would be brave to come up to the window sill thought .. maybe one day he will.

Wednesday, 2 January 2013

A New Year

Normally I am always looking back and worried that I did the wrong thing about treatments, did I have this too early or too late, and today seems no different.  I am worried about the chemo I had in November and my two doses being enough before I went into body melt down and the fact that old pains are back as well as a couple of new ones but I refuse to keep these in my mind.
2013 has to be a year to look forward, I can't go back... I wish I could and I am sure I am not alone in this sentiment at times.  Choosing what to do and when is not an issue we should take lightly and as I wait for the appointment for a scan, which I still haven't had since chemo, I am left a little worried as to what it will say.  Has the 2 doses awoken the meso's wrath or did it ease its growth speed, even if the pains are back.  Maybe fluid was dispersed and is gradually building up again .. these are questions though we never get answers too.
I stepped out for my first walk of the year yesterday and boy was it cold and windy, we ended up driving part way into the first field as the wind was too strong for me to breathe.  At least I got out and made the effort, of which I intend to do more of this year.
Although I don't want to just be out dog walking, I want to go out and about and visit places I haven't seen in years.  Another good thing about yesterday was that I saw a few deer, always a good sign that the poachers haven't been out recently.
We saw 5 in all, 2 Mother's with their young ones, what a relief it is to see them.  They watched us cross through the woods before taking off and jumping the fences.
I found myself in tears as well on New Year's Day, there I was in the shower and thinking of all the people who have died last year of meso and then suddenly our little Jagar was in my mind's eye.  Probably because we have been looking at old photo's but boy did I sob.  Probably a mixture of what everyone with or associated with this cancer is going through.  Not to mention my own fears of what will I do next. 
I am hoping we will get away on some cruises but I need to get hubby sat down and focused on the brochures.  We both should stop the cigs and everytime I think of them I have a near panic attack at the thought of not smoking ... I have created an addiction to them and the more I think about not having one the more I find I want one!  A vicious circle has evolved.
Due to the windy weather we have endured I have been working through an exercise book on creating databases in VBA (for something to do and hopefully learn a trick or two).  I should have done this years ago when I started writing them, but as I have worked through it the code doesn't always work!  So frustrating but it has helped to keep my little brain cells ticking over.  I always want to run before I can walk on any project I take to hand so in some ways it has been good to start from the beginning and see where I go wrong and end up writing a long winded procedure instead of something short and sweet!
So we would normally be back at work today but we are staying off till Monday, having had days off doing nothing I don't really fancy having to hurry on a morning and go to work, ok I take over an hour to get ready on a workday morning, but over these hols I have sat in my dressing gown till 11 am! 
We haven't really been out so today I am dragging him in doors to the shops, we don't need anything but it isn't nice weather and I think its about time we escaped the house and dogs!
So here's to still being here this time next year and may we all find a path through the treatments that enables us to still be around in another 12 months.
I would like to say a Thank You to everyone that has supported me through 2012, you help to keep me battling on and also help ensure I write what I feel.
We had a sad year with so many losing the battle to mesothelioma, I hope and pray that 2013 we have fewer losses and less people being diagnosed.  Having your life be given a death sentence is so unfair.