Guest Blogger - Rachel

Rachel is a long term survivor and has been blogging for a number of years, she recently contacted me to ask if I could share her insight on her approach on my blog so without further introductions from me I had this posting over to her.

Blogging the Cancer Frights Away

By Rachel Pappas

www.1UpOnCancer.com

When I heard the three dirty words: “You have cancer,” I wasn’t shocked. Two weeks earlier, the radiologist walked into my cubical at the imaging center and threw the “c” word out, while I lay there, staring at the ultrasound screen. Days later my breast surgeon reconfirmed the probable writing on the wall as she stuck me with the biopsy needle.

By the time the official call came, I had myself diagnosed as a gonner—I'd had far too much time to spend on the Internet, and the data floating out there rocked me. Does it help to read for a third or fourth time: “carcinoma associated with poor prognosis”? Do we need to read sterile-sounding clinical-ese that we don't understand beyond that it has freaky vibes? What does it do for us to sweat over five-year survival rates? And FYI if you don't know yet: these numbers are typically based on 10-year-old studies.

I moved past surgery, still frozen with fear. But it started to thaw, slowly, in the chemo suite.

Who would have thought sitting with a bunch of bald ladies, attached to a fluid-filled bag for a few hours, would be my happy time?

But as we shared our boob-related jokes and PBJ sandwiches, I didn’t just see a disease. I saw moms. Teachers. Funny, inquisitive, chatty human beings. We started talking about anything but cancer. Though sometimes the conversation went back to the monster. We talked about what to say to our kids. Where to buy cranial implants (aka wigs). How fricking scared we were when we first got hit with the “You have cancer brick.”

This is why I decided to start blogging. I remembered how blown away I was when I first got on the Internet as a brand newbie. I thought about all the questions my chemo clique ladies had. I thought about the things that mattered to us now, and about the things it helped us to talk about. I was going to create a safe, happy place.

When we first hear we have cancer, we need the positive—we need it right then.

And we need it for the rest of our lives, because life’s never the same again.

Being a 20-plus-year health writer, I had my work cut out for me when I launched my site. But I still had lessons to learn because I needed to know how to only do the positive. I had to figure out how to not overpromise, to be real and informative—but still be comforting, even funny. How do you find this kind of happy fodder EVERY SINGLE WEEK? I mean we’re talking about cancer!

But as I put my feelers out, I found it was out there—tons of it. Stories to tell about cyberspace friendships that it takes an experience like cancer to understand and embrace. Stories on retreats where survivors do zip lines, paint, dance, laugh and cry together. Stories on ways we can care for ourselves moving forward (there’s so much our docs don't tell us.) Other survivors’ mountains, and how they’re taking them on.

Call me selfish, but I blog as much for me as for you and whatever warriors stop by.

I use it to keep me straight. How can I write about what good eating and sleeping does for us … how can I ask people to open up to ideas like guided imagery and wacky sounding concepts like laugh yoga unless I try them myself?

Then there’s the inspiration I get from the others. The ones who are in a hard place, but not giving up, still looking for what will help them beat this monster and or live as fully with cancer as they can.

When I see the flurry of clicks on my articles on end of life care, or managing metastatic disease, it breaks my heart, but it lifts me too. I am reminded, I had cancer, but today I am in a better place than so many. Still, they are searching, connecting, hoping—actually taking the time to thank me—so they are my medicine. All the folks I meet through cyberspace are my lift—no matter their stage or circumstances. We keep on keeping on, together.

Thanks Rachel for that inspiring piece of literature!

I think all of us who blog are hoping it will help some one out there with cancer, even just letting them know you can live a normal life but equally in letting people know you are allowed to feel rock bottom once in a while.

Can't decide what to do

Ok we had snow yesterday, quite a heavy down fall, today we had more, but not as much so I took the opportunity and went with hubby and dogs off to the fields.  We just got part way down when the snow and wind picked up but I wasn't going back, oh no I was out for a walk and walk I was having.

 

Bear thought he could knock me over while we were having our photo taken, believe it or not but it was snowing when this was taken but I guess the woods were sheltering us.

 

Since returning we have finished the Sunday Times Crossword, a feat in itself, and now hubby is up the shed making an Owl Box and I just don't know what to do with myself.  I pulled up the video program but I just can't get into doing any editing of our honeymoon, yes still stuck on those tapes, my computer monitor driver keeps crashing while doing it, so I am getting a tad annoyed with it all.

 

Blogger has developed some sort of problem, God knows what and keeps freezing, I think I have either over worked my black box or the whole cyber space thing is having a bad time!

 

The ironing is waiting for me, I have work for work to do which is spread across part of my desk here at home, my book to sort, although waiting for the cover I could be getting the bookmarks for chapters sorted but I just don't understand the directions on publishing it!  I could do a slide show of the photo's I have taken off the video, I could even go and help hubby cut his wood and screw sides together but I'm just not in the mood.

 

I have another guest blogger writing an article for the blog, she is a long term survivor of breast cancer and has a quirky way of writing and of course doing fact finding on staying ahead of cancer.  Although breast isn't anything like ours I hope you find her story interesting.

 

Debbie is still in hospital with her infection, Tess is getting ready to battle with chemo once again, Steve has finished and still on the body is fighting to feel Normal again, Mavis and I are still inactive stable, well I hope we are!  So why am I in this mood, my meds went in on time (sometimes taking them late can affect my mood) maybe my body is calling for one of those days on the sofa, but to be fair every night from 8pm I am usually sat on the sofa watching whatever is on TV.  The nights are quite boring because I seem to finish on the computer then its just sitting, but maybe today I need that, who knows.

I need some stimulation to get me into gear, maybe a new project but one that doesn't have me sat in front of the computer.  I was asked by someone who has read my book when I'm giving her the next one, heavens am I ready to start with the next one?  Actually I have started it but I can't get back into it!  I have set a wager with a fellow blogger that we will write together as we both want to write books - I need to get into gear to keep up my end of the bargain.  I feel that I have so much going on but then not enough, maybe I am bored I don't know!  Ever feel you start things but never finish them?

As for my meso circle, I have to say all is quiet, that means everyone I know is hopefully doing well and staying stable.  I did hear from Bud the other day, Chrissi has had cryoablation on some of her tumours and I believe is starting some form of chemotherapy.  I hope it works for her as the news it returned so soon after surgery was a big shock.  My thoughts, as always, are with anyone who is fighting this terrible cancer.

On another note, I passed my healing assessment, which means I can practise healing in the SNU churches.  I am so pleased because it was a goal that I had set after surgery. 

Well on that note I guess I should close, I hope you did something enjoyable today and something that you really wanted to do.  Me, I can hear that sofa calling my name.

The problems with a False Diaphragm

My appointment arrived to see the Stomach Specialist Dr V so last night with anticipation we went to see him for the final results and debate about my bile problem.  I had emailed a doctor friend for his opinion too.

 

Our Chest space is known as negative whereas below our diaphragm is known as positive, the job of the diaphragm is keeping the two areas separate as the positive is always looking for weakness in the negative and my diaphragm is weak.  The stomach has pushed up in between the gap of the two sides and a good 2 inches of my stomach now resides in my chest area.

 

Under normal circumstances this would be repaired, its a type of hernia, with another piece of membrane fixed over the weakened area and the stomach gently brought back down to its correct position, but I'm not normal. 

 

To operate he would need to go above the diaphragm to repair it, my meso area.  To pull the stomach back down could result in disturbing the meso cells and spreading it down into the abdomen.  It just isn't my luck is it, Quality of Life is important and this blights mine everyday.

 

My only concern now is if the stomach is higher and in the meso zone then can the meso attack the lining around my stomach anyway?

 

I always remember hoping I didn't lose my diaphragm during surgery and asked John how would I know if it had gone, he told me I would have a tube going down my nose into the stomach.  The first thing I did when I woke up was felt the tube and I cried, why I don't know I knew I didn't want the diaphragm out but I didn't understand why.  Although keeping it wasn't an option or saving it would have been a waste of time as it was covered both sides with mesothelioma.

 

I doubt I am the only person who suffers from this as many have now undergone surgery and surely many have also lost this membrane.  So if you are one of those people and suffer how do you cope?  I have lifted the bed again another 2 inches in the hope that gravity works in my favour but to be honest having all the bile just resting in your stomach isn't pleasant either, but which is the best an even coating from bowel to throat or sitting like a dead weight in the pit of your stomach.

 

On that note I had better pick up my things and get to work, another long day ahead but an appointment with the hairdresser late this afternoon, I must admit I need it, I can hardly see through my fringe!

Guest Writer - Nancy Meredith

Writer Hopes to Make a Difference for Mesothelioma Patients and Their Families

 It is both an honor and a privilege for me to be invited to write a guest blog for Jan Egerton. I have only known Jan for a short time, but her enthusiasm for life and unwavering fight against mesothelioma has inspired me in so many ways.  Personally she has inspired me to live each day to the fullest and not to take anything for granted. Professionally, Jan has helped me sharpen my focus on finding and reporting on important breakthroughs in mesothelioma research.

 A diagnosis of mesothelioma or lung cancer can bring life to a standstill for many families. Nearly 10 years ago, my father was diagnosed with stage IV lung cancer, and in just six short months he had succumbed to the non-forgiving disease. Although my family and I frantically searched for as much information as we could find about lung cancer, we didn’t really know where to turn or what to do next. After he died we were left with a feeling of hopelessness and guilt that maybe we didn’t look in the “right” place for that valuable piece of information that could have extended his life. That same scenario plays out frequently for mesothelioma patients and their families.

 There are virtually hundreds of thousands of websites that offer information to the public about mesothelioma, but finding a website with clear, accurate and timely information is the key to ensuring patients and their families get information that can make a difference in their care. In my position as a writer for MesotheliomaHelp.net, I am able to use my energy and passion for writing to bring the most current and pertinent mesothelioma information to patients and their families in one location. My goal is to provide the critical information to families battling mesothelioma needed to empower them to work with a medical team that will allow them to proactively participate in making the decisions for their care.

 The Mesothelioma Cancer Resources Blog is updated daily with timely information related to mesothelioma clinical trials, the latest research and treatment news, human interest stories about and from patients and their families battling the disease, federal regulations, policies and laws on asbestos and mesothelioma as well as other pertinent topics. I believe it is important to keep the information fresh, and reporting every day about mesothelioma ensures that I am constantly scanning all sources for breakthroughs in the field.

 Ricki Lewis, PhD, geneticist and author of “The Forever Fix: Gene Therapy and the Boy Who Saved It,” has proven to be an invaluable resource for me as I report on gene therapy. Ricki has not only written guest articles detailing the intricacies of gene therapy, but she has guided me to relevant topics, and educated me about the background and future of genetics in cancer therapy. Her support ensures that our readers get accurate, factual information.

 Most recently, I have had the pleasure of working with Jennifer Gelsick as she shares the ups and downs her family has faced as her father, Don Smitley, battles mesothelioma. Jennifer has led our readers through her father’s initial diagnosis of mesothelioma, through his surgery and treatments, and to his new life as he fights to keep the mesothelioma from coming back.  Jennifer continues to provide critical hints and tips to families on topics ranging from traveling for treatment to adjusting to life after treatment. Her stories can be found in our “Faces of Mesothelioma” section of the website.

 Jan has allowed me to bring her struggles of mesothelioma to our readers as well. Since her diagnosis over a decade ago, Jan has remained steadfast in her resolve. During that time she has built a network of others dedicated to the same result – finding a cure for this “nasty cancer.” Jan’s advocacy and support has given many people in England and the United States a place to turn when looking for the real-life struggles a mesothelioma patient faces every day.

 The latest addition to the blog is the Nurse’s Corner. Lisa Hyde-Barrett has been a thoracic surgery nurse for nearly 25 years, and she has had the privilege of caring for countless mesothelioma patients over the years. Lisa will offer medical information to the readers.

Like Jan, Jennifer and others, I hope in some way I can make a difference in the mesothelioma community. I also hope that I am the one who breaks the news when a cure is found.

 About Nancy Meredith:

 Nancy is a former IT professional who now dedicates her time to writing about mesothelioma. When she isn’t writing, she is running or biking for fun or to help raise funds for cancer research. Nancy lives in Wake Forest, North Carolina with her husband and their dachshund, Scooter.

Simple life

I truly live a simple life, the only things I truly plan now are holidays and have even put the boundaries out on those from 6 weeks in advance to 5 months.  I remember last February for some reason I thought Christmas 12 would be my last and as the year progressed I was sure it would be, what with the chemo having a reaction which meant I wasn't allowed any more.  Yet my miracle happened and that first infusion did more damage than those previously endured years earlier.

 

So my simply life is work, dogs, husband and holidays, although I shouldn't class work as simple over the years it has stressed me out.  The houses under development and the changes I made to the internals to make them more attractive to the buyer.  The market crashing and sales standing still, the cold winters I spent up on site.  In fact this is the first winter for a few that I wasn't having to go to site and ensure all was going as I expected.  But I always find projects to do, if not the houses then large changes to our databases that take weeks of planning and writing, I have found I need these things to keep my mind active and away from Mesothelioma.

 

I opened up a program for the housing that I haven't used for several months and I just couldn't remember how to use the thing.  The other day I had to go into the back ground programming of one database but could I for the life of me understand what I had written or indeed how to repair the error message someone was receiving.  So keeping my brain working is good on the one hand but my brain isn't working as well as it did, say even a year ago.

 

I have had a couple of people doing guest articles for me, I have found them interesting how they arrived at working for Websites that are there to help us with this terrible disease.  I have become friends with those who have published and I have at least one more to do.  Nancy is a writer for another website on Mesothelioma, she actually writes the blogs and checks out the latest trial information then turns it into something we can understand.  We were emailing the other day and it struck me how even though she has a 'normal' life, it isn't that much different to mine.  I keep saying the only thing wrong with me is Mesothelioma, (and Bile) but I don't ail with everyday problems most people have.  How often do we catch colds - Stomach bugs etc?  I think our immune system is fighting really well, it keeps us pretty much safe from many of the bugs that float around.

 

I have taken the opportunity of working at home most of this month and quite a lot of last, for the first time in years I am half way through my Audit for year end, I am hoping that we will have good weather this year and I will take more time out of work completely and spend it with hubby and the dogs in the garden or walking some beaches somewhere.  I also must start using my fantastic Nikon D3 camera more and do what I wanted to do, catch wild life at their best or worst as the case may be.

 

I would love to go back on a Safari but I know this would be out of the question, the long haul flight for a starter isn't advisable, but if you ever get the chance to do one, do it.  The best 3 days you will ever have sitting watching all types of animals in their natural habitat.  I guess my camera will just have to snap the dogs in the near future.

 

I am sitting here with the sun shining through the glass and although the morning started with its usual dread I feel uplifted.  The sky is a perfect blue, the birds are chirping away and I have the house to myself, for a while anyway.  I hope the sun finds your bones to wash across and give you a lift.

 

Special thoughts to Debbie and Tess, both of whom are having a rough time at the moment.  Debbie is in hospital with a chest infection, her start date for chemo has been put back and Tess will be commencing hers soon.  I hope the sun helps lift their spirit today too.

Guest Article - Linda Reinstein ADAO

For those of you who follow Linda you will know the work she does for the Mesothelioma Community world wide, indeed she came to the UK for the 1st IAPT Conference which was in support of Derbyshire Mesothelioma Group. 

In turning the tables myself and another Mesothelioma Sufferer, Janelle, managed to get Linda to write something about herself.

 

Turning Anger into Action

An important part of the Asbestos Disease Awareness Organization’s (ADAO) mission is to be the Voice of the Victims of asbestos disease. Our Share Your Story campaign is near and dear to my heart. So when Janelle Bedel and Jan Egerton invited me to share my story with them, I couldn’t say “no” and yet, I am a little uncomfortable being the spotlight. But when both Jan’s explained that they wanted to inspire and empower other cancer patients, I was all in.

At ADAO I talk openly about my husband’s death from mesothelioma, but I rarely mention that I am a cancer survivor myself. I am one of the “lucky” ones. I had melanoma in 2006, which was treated with surgery, and I have not had a recurrence. To speak of cancer and empowerment in the same sentence is hard to wrap my brain around because nothing can make you feel so powerless as cancer does. I was terrified. Was my daughter Emily going to become an orphan at 13?

But, as Eleanor Roosevelt said “A woman is like a tea bag – you never know how strong she is until she gets in hot water.”

The power I found came from my commitment to ADAO, to a bigger cause. Here was a cancer that could be prevented. Here was a cancer that could be completely eliminated if we made people aware of the danger of asbestos and showed them how to protect themselves. The cause of many cancers will always remain a mystery, but not mesothelioma. I had to continue the fight to save lives.

My inspiration came from the brave Mesothelioma Warriors all around me. People like Janelle. People like my husband Alan. Throughout their illnesses, when others would have taken to their beds, they fought for a better world -- a world free from lethal asbestos.

 “Mes•o•the•li•o•ma: Can’t Pronounce It, Can’t Cure It”

I want to share a bit about the personal side of my journey with Alan. Not for sympathy, but so you can better understand the motivation behind ADAO and our work.

In 2003, our daughter was just 10 when Alan was diagnosed with mesothelioma. I had never heard of the word, couldn’t pronounce it, and then learned there was no cure.  I felt alone, isolated, and paralyzed as I began this journey with Alan and he chose to undergo an Extra-Pleural Pneumonectomy (EPP) -- a surgical procedure that removed his left lung, pericardium, and replaced his diaphragm -- in hopes of having more time with his family.

Is it my maternal instinct, optimism, or anger that fuels social action?  Maybe it’s all three.  As a mother, what could be more horrific than burying your husband?  

“The Inconvenient Truth: Asbestos Kills”

Fueled by my intense grief and anger about Alan’s mesothelioma diagnosis and that asbestos had not been banned in the USA – I knew I had to turn my anger into action – so I co-founded ADAO.

In 2006, Alan lost his fierce battle with mesothelioma.

Since establishing ADAO in 2004, we have exponentially grown and become the largest asbestos victims’ organization in the United States dedicated to education, advocacy, and community to prevent asbestos-caused diseases. 

 “Together, Change is Possible.”

When I testify and speak on Capitol Hill, I often repeat this hard, but truthful line: “For every life lost to asbestos, a shattered family is left behind.”

The technical revolution has changed our world forever. Social networking platforms such as Facebook allowed us to instantaneously connect, share, and comfort each other. Patients, families, and friends from around the world are able to share hope, strength, and resources. No one needs to be as alone as we were. Sharing our stories has enabled asbestos victims to unite around the world and embrace solidarity to prevent exposure, raise awareness and build a support community.

Our stories are shared and remember. Our lives are effortlessly connected. Our voices are heard.  As Margaret Mead said, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

You can follow Linda by this link

Without the dedication of people like Linda the dangers of Asbestos would still be ignored all over the world.

Thank you Linda for opening the door and letting me publish your thoughts.

What a Life

Due to the cold and the snow I have mainly worked at home this week, today will be no expection.  Actually I have achieved quite a lot and year end for one company is well on the way.  The only day I had to go out, believe it or not, was Wednesday when it was snowing and blustering like a proper December's winter day.

Occasionally, and I do mean occasionally, I have written on another blog Spiritually Jan as well as here, about healing and my thoughts regarding life after death.  On and off throughout my life I have attended the local spiritualist Church, I hadn't been for quite a lot of years when in 08, with nothing looking bright for me, hubby said (who isn't a believer in anything) why not go back and have healing.  So in 08 I returned to the Spiritualist Church and started having healing.  I try and go once a week, sometimes I will miss but throughout the last 5 years I have attended regularly.  After my successful operation I also decided to try my hand at becoming a channel for healing and on Wednesday I finally sat my assessment to represent the SNU as a healer. 

 

I can't say whether it has had a helping hand in keeping me alive because we can't live two lives at the same time, ie me without healing, vs me with healing, likewise with the treatments we have had, we never know for sure what has helped or what hasn't if we try two things together.

 

For those who would like to know more about healing it's a really simple process, you don't have to believe in anything, be nosey and have a visit and experience it for yourself.  Find your local Spiritualist church and look up the Healing Service.  You don't pay but a donation would be nice, even just 25p is welcome.  The aim is that your own spirit is helped to work from the inside out while medicine works from the outside in.  A Healer (Channel for the energy) places their hands on your shoulders or back and for 5 to 10 minutes you feel this wonderful heat pass into your body, its like having a little hot water bottle.  Sometimes you get cold coming through, usually I get cold and I hate the cold!

 

Hubby has got up and took off early this morning with his photography friend, looking for some rare bird that has flown in by accident, heaven at last the house to myself for 8 hours.  This project I have started for our life together is going to take some work, but I get bored of doing the same thing so hence in between scanning I start doing slideshows only to find I have to alter them again because I've come across a photo out of sync  -  then there's the learning how to use a new program, all the bits that make things work together and turn it from a boring picture show to something entertaining, finding music to match blar blar! - I'm starting to wish I hadn't started. 

 

Then yesterday I was drawing our house on the design program, he said "If you think you are changing something - think again" Oh he knows me too well!

 

Yesterday many of us sent Valentines to Mavis's Hubby, he is so sweet so I bet he was overcome when quite a lot of cards were handed to him - I hope Mavis put a stern face on when handing them over as if to say "Ray what have you been up to".  I received a beautiful display of Roses and Lily's, it was our 18th Valentines together.  We had Champagne with Salmon, no wonder my heads a little fuzzy this morning.

 

On that note I had better do some work and hope you all have a good day.

Guest Writer - Ben Leer

On the internet today there are so many sites to choose from to discover information on Mesothelioma.  Over the last couple of weeks I have swapped doing my blog and asked people who work for these organisations to write and tell us why they think their work is important and their goal in helping us.  Today is Ben Leer's story, he works for Asbestos.Com, who have just revamped their website, I think its the first time in over 5 years, I must say I like the new format, easier to find what you are looking for.

Fighting the Good Fight

Nowadays, most people hear about asbestos and mesothelioma from TV commercials. Some of us might even know someone that has been exposed to asbestos or someone diagnosed with mesothelioma cancer. But few truly understand the dangers and that there is a much larger picture that spans back decades that can easily be forgotten or ignored.

When you begin to look into the history of asbestos you find out how it was used in everyday life. At first it seemed like it was a miracle material. Used to fireproof homes and equipment among other products, but then it became misused. It took years but at some point there was a consensus that asbestos was harmful.

 

Yet companies did not stop making products that contained asbestos, and it was mostly at the workers expense. Many times it was even at the workers families’ expense through second-hand exposure.

When you grow up you learn core values. These values shape how you make decisions down the road. They shape how you conduct yourself in conversation and business. So, what were those companies thinking? Where were their values? When did they find out? Why didn’t they stop?

It turned out to be a numbers game. Profits compared to losses. The companies ended up running people, instead of people running the companies.

 

When I came to the Mesothelioma Center at Asbestos.com their goal was clear. It was our job to provide the best resources for those affected by mesothelioma cancer. Whether someone needed information on treatment, help with finding a doctor or a community to connect with. We are able to help a large range of people diagnosed with mesothelioma.

By far one of my favorite moments was finding Jan’s Journey. It was a touching blog. I spent some time reading it and I knew I had to share what she had to say. That is where the Wall of Hope began. We made an initiative to hear what the community had to say to inspire each other.

Our community kept growing and more people come to us for help with mesothelioma, especially veterans. They have been hit hard by the destruction of asbestos. Unfortunately, every single branch of the military used it so their exposure rates have been high. We are proud to help those who fought for our great nation.

Many people come to us, not just veterans, because they need answers. There is no stone left unturned in our journey to get those answers for them.

There was a great injustice done by the companies that lied and we wanted to bring honesty to those who have been deceived. At the Mesothelioma Center we can help those affected by mesothelioma and give them the help they need, and the care they deserve.

Thanks Ben, the Wall of Hope is important to everyone.  If you have a story that could help someone else please submit it, because Mesothelioma doesn't seem to be textbook the more stories out there the more likely yours could help one person.

Good News but still pains

After the good news on Monday afternoon it didn't sit right until on Friday when I finally saw my GP and read the results of the Scan.  Nothing was amiss the Mesothelioma has gone into hiding and for the first time in 3 years come April I am at Stable Inactive Disease, my GP hugged me as I walked into his office then asked what were my plans!

 

I told him about the rotten pains I am still having and now have that horrible pain under my left armpit, we all have decided it must be with the meso shrinking and the nerves are recovering, knitting back together, which I believe is extremely painful. 

 

On Monday night though I had a case of the Winds, and I mean Winds, I could out do Gary and Lexi together.  When we went to bed I still letting off (can't think of a polite way to write this so drop a few lines if you don't want to read), he said I hope you don't blow me out of the window, well I was rolling with laughter, the tears were streaming down my face and my chest hurt from it.  Every time I stopped laughing the wind outside made the blinds rattle and it set me off again.  It was some 20 minutes in total that I laughed, so at first I put this down to my side being worse!

 

Saturday the weather was calm and for the first time in weeks I ventured out with the dogs, Bear was over the moon that I was out walking and I even got a lick to prove it.  Bear hardly ever gives kisses so it was a special moment and most unexpected.

 

On Wednesday a Question and Answer article was posted on Mesothelioma Cancer Awareness Site, at the time of posting I was dreading bad news.  I still can't believe it you know, I am thinking or rather hoping if its stable and has reduced in area's upto 75% it may stay dormant for a couple of years, this is my biggest hope. 

 

My project is still going, I am finding it amusing watching some of the old footage of us but two of the old tapes will not work, and I figure they are important ones.  I have box loads of the modern tapes of us on safari in South Africa from 1999 and 2000, each day I just held the camcorder to my eye all the time and probably missed so much.  I really don't fancy going through it all but I have started so I guess I will finish.  Strange though because we don't seem to have taken many pictures of us either, and hardly any together.  I haven't used the camcorder since 2006 apart from Xmas and haven't a clue where those tapes are and then Gary bought me a new camcorder Christmas before last.  Used once this Xmas day!

 

Digital camera's now have video recorders built in too which again I very rarely use, in future I am going to start taking more photo's of us and less of the dogs!   The programs to create things are so clever and unless you have hours and hours to practice and make dynamic slideshows you end up feeling you have offered up something boring.  They can produce your slideshow into marvellous show but if you want them in order they don't seem to follow the timelines.  So mine are, of course, the boring slideshows!

 

I'm pleased too that Lou in Australia has picked back up the blogging routine, she has had Mesothelioma for such a long time but has an amazing sense of humour, she puts me to shame.  I do hope you click on her link and start following her thoughts on life with Meso.

 

Well I think that's it from me, I hope that my Stable InActive can give you hope and you get the same results too if you are going through Treatment.  My low dose has done me well so maybe there is something in overdoing poison can sometimes be overkill.

 

On the net

It is nice to have guest articles on your own blog and equally as nice to answer questions for others on the larger, corporate blogsites.

This week I was asked by Claire Brewer of The Mesothelioma Cancer Awareness Centre to answer some questions on my mesothelioma so without rabbiting on here is the page.

Also you will find other stories, much more interesting than mine and further help that may give you an answer you are looking for.

http://www.mesothelioma.com/blog/authors/warrior/stories-of-survival-jan-egerton.htm


It doesn't seem that long either since I did a piece for Mesothelioma help either, and again a lot of good articles to read.

http://www.mesotheliomahelp.net/blog

When I was starting out there were no sites like these.  We had Cancer BackUp but mesothelioma wasn't even a topic.  It's good to see several wonderful sites that can help you.

I have listed 4 others, all of which I try and read once a week.

Asbestos Disease Awareness Organisation,  Linda dedicated this site after loosing her husband to mesothelioma and took up arms to ensure Asbestos is banned.

http://www.asbestosdiseaseawareness.org/

and

http://www.asbestos.com/mesothelioma/

Many have survivors or caregivers stories which may help you. They are always on the look out for new information and especially stories from you the Mesothelioma sufferer or Carer.

By sharing we are each helping one another through this terrible journey of cancer and hopefully one day we will bring about a cure because of it.

All the above are American websites, please remember our own like

Mesothelioma UK and Mick Knighton Mesothelioma Research
http://www.mesothelioma.uk.com/

http://www.mkmrf.org/

Good Reading everyone.

Miracle for Me!

Nothing can put a blot on my landscape today, even the snow that fell all night and has brought that northeasterly wind with it.  Why?  Yesterday I had such surprising and wonderful news, in fact I am still in shock.  My scan was taken last Tuesday, my new pains had already become a part of my life, and I was expecting

     "the meso has become aggressive, chemotherapy was probably a bad idea, the growth
      pattern is everywhere"

instead a shocked oncologist said

     "I can't believe it you have shrinkage and reduction and I mean not just one little bit but
      everywhere"

He now has decided that any further treatment will be discussed with J Steele at St Barts and my oncologist is willing to take a further interest in keeping me going.  Maybe another low dose of Alimta as maintenance or maybe a blast of them both, with careful consideration, at a later date.  If that does happen mind, I will ask to be treated at James Cook, forget keeping the local ward open, the area and atmosphere will never change there.

 

So we were blown away, he can't explain the new pains, or the fact I have had to increase the morphine, hubby believes its because the pressure from the nerves has been released and not used to having so much weight lifted from them.

One thing I did notice, but can't say anything to hubby, is that he said the last scan showed growth everywhere, yet last time he said it was slow growing and only in certain places.  No wonder we get lost off on what to believe or not.  I will request a copy of the scan and for once instead of sending it for others to read,  hang it on the wall like a BAFTA award.

Seriously though, I think I may ask a radiologist to go through it with me, I met one when I was having my insides looked at so maybe it might be worth asking.

We, of course, were going to celebrate with a bottle of champers but by the time we had tea, ok we got a take away, I was full and tired and hubby looked ready for bed.  I don't get anxious about the results but he does, his adrenalin must have been pumping like shell oil, through his veins, so he was totally wrecked and ready to collapse.  We had a glass of wine instead but still clinked glasses and are looking to a bright future.

No more discussions about the scan now with him until the next one is due, I did say he was getting better but the door to discussing mesothelioma has been truly slammed shut again.

The workforce are all suffering with various bugs, yesterday I worked from home because the wind and rain put me off stepping over the threshold, today I was ordered to work from home in case I pick anything up.  So I have the log fire burning, my feet are toast and the birds are pecking at the food on the windowsill, I doubt I will get much work done!

On that happy note I will leave you with the picture of this morning from our front door

Keep warm and bug free .....

Memories ...

After a slow start and posting Claire's article (below) I took Mavis' advice and spent some time doing something different.  I am in the middle of starting to look back through our time together and decided to try and copy the old (and I mean old) video tapes onto DVD's.  The Camcorder doesn't link to the computer so I hooked it up to a video recorder which I connected to the TV.  I then connected a DVD recorder\HDD player to the video and set play and record. 

 

We had so much laughter reliving our honeymoon.  The rivers we had swam in that were infested with all sorts, the lovely couple from Holland we met and spent 6 wonderful days in their company.  We had forgotten more than we could remember.  Needless to say the first DVD didn't record so I changed the plugs around and connected the recorder to both the TV and Video.  We sat back and laughed as the second tape played, so many good times unravelling in front of us and the interviews we did to each other about our honeymoon were so funny. 

 

On one tape, (believe it or not I didn't even write on the covers to say which day or where!) our last day we were sat in the bar from 2 pm to 7pm, gosh I was surprised how much I used to drink, there again it was our holidays! 

 

Even after thinking I had mastered what cables went where the second tape didn't record either, well that's not true they have written to the disk, just neither will play on the computer or the dvd player arhhhhh.  Frustration is not a word I wanted to use today.  I had already gone to Tesco this morning to buy to memory sticks for my new camcorder as I thought I would do the same as last time, input the TV onto the camcorder.....but no sony have changed the way the camcorders work.  I didn't buy any of the new modern tapes for my older camcorder, which does work by hooking it to the TV and playing the video.  So I have 8 large tapes that I can't record and I am frustrated.

Although a slow start this morning I have decided to try staying at the higher intake of morphine, lifting it by 30 each time to 170 mg for morning and night, I must admit I do feel better today but then it could just be a session and I am masking it!  I never know which way to play this meso game, and as we all know, we never win.

The dogs didn't get out to the woods today, Lexi has finally stopped giving off the 'make babies' scent and Bear isn't as interested, at least the Elvis hips have stopped.  Now he is overtired.  He wandered up to me and gave me those big eyes, I gave him one of those scratches under his chin and he seemed to appreciate it.   I fear he is feeling a little unloved!

So my day has been good but not productive, the pain has been in the background, which has been a blessing, (all those prayers that have gone out for me have worked) and Sunday dinner is resting nicely inside my tummy.  I hope you all have had an equally enjoyable day.

Just wish I wasn't at work tomorrow, I guess this reliving the tapes will become a Sunday job.

Guest Article - Claire Brewer

Over the years I have done interviews for web pages on Mesothelioma, so this time I turned it around.  I had Savannah write about her interest in mesothelioma and her work at the Pacific now its the turn of Claire who works for Mesothelioma Care Alliance.

Hi all! My name is Claire, and I am an educational outreach coordinator for the Mesothelioma Cancer Alliance.  After having lost my grandmother to lung cancer, I was excited to join this organization and help others affected by cancer in some way.  Shortly after I began, I unfortunately experienced watching my Aunt lose a best friend to peritoneal mesothelioma.  It was then I truly understood how devastating this cancer can be.

Through this position, I have had the pleasure of meeting a variety of amazing cancer survivors, patients, and advocates. If there is one thing that has truly blown me away during my involvement with the MCA, it is without a doubt the community of Meso Warriors that exists.  Their dedication to helping each other get through tough times, raise money and awareness, and take a stand is amazing – even on different continents!

I am proud to be a part of the MCA because of the information and resources that it provides people faced with this horrible disease.

The MCA Blog – Here you can find a wealth of information on all things mesothelioma.  Read the personal journey of 7-year survivor Heather Von St. James and her husband Cameron, the newest treatment and research knowledge from thoracic oncologist Dr. Jack West, and breaking environmental and public policy investigations from Pulitzer-prize winner Gary Cohn.

The Facebook community – Here we are proud to offer a page where anyone affected by mesothelioma or cancer can come to connect with others facing similar situations.  We feature an Advocate of the Month each month, which is an active member of our community sharing their story and lending support to others. 

On the site, you can find important information such as available clinical trials, the best cancer centers, and what products can contain asbestos. We also offer all related information via Twitter. 

I encourage anyone who is interested to check out these resources, and join our community.  Together, we can make a difference.

I hope to feature more from the world of those who work to bring awareness of abestos and their involved in the near future.

A week of Meso

Sunday started badly, having had restless nights I didn't get out at all as the weather was terrible.  Hubby came back shortly after leaving with dogs in tow, to say that a little fawn had ran into a fence in front of him and he had stayed for a while then moved it to cover.  So the day began, him feeling guilty that if he had travelled down the lane 3 seconds later the fawn would have been long gone.  As it turned out we ended up housing the fawn at my brothers place and my nephew spent the day going back and forth to check on him. 

 

I had spent most of the day scanning photo's, I want to ensure this project of our life together is done before I die.  At 3 pm the scan died an overused death, (it hasn't been turned on for some three years then to work all day Saturday and most of Sunday what did I expect).  At 3 we went to buy a new scanner and called in on the fawn, I sat and stroked it and talked to it and prayed it would come through.  The vets thought it was concussed. 

Hubby carrying Fawn to Safety

We saw this fawn when it was just born in the fields with its mum
 

Unfortunately between 6 am and 9 am the fawn lost its battle, when we went to bury it blood was leaking from its head, obviously it had been involved in an accident earlier, hence why it didn't jump the fence when it heard the landrover.  My heart sank and so did everyone else's.

 

The weather took its toll on me being out in it and on Monday I felt like death warmed up.  Another night of insomina didn't help either.  I went into work for a while then came home, Tuesday I went for my scan, good job I checked my letter as I thought it was Thursday!  I didn't rehydrate with water enough and then for some unknown reason I decided to have a glass of wine, which led to more than 2.  I went to bed typsy and hoped I would sleep the night but at 2am I had woke up, my heart was racing and I couldn't get my breathe, I felt like there was no oxygen getting into my lungs.  This is a terrible feeling, for those who haven't experienced it.  How I wished I had kept onto mam's oxygen machine then.  I tried to settle but to no avail.  Hubby woke and I could see the worry etched into his eyes.  It didn't help matters when we took my temp, back to a meso temperature of 35.7, this is a session of the meso growing inside my body.  By 4 I fell asleep and he let me lie in till 9.  I was suppose to attend the funeral of a very dear lady who has fought with lung disease for many years and who is highly thought of in the circles of spiritualism.  Needless to say I didn't get, which then brought on a guilt trip.

Wednesday I slept and although new pains had now developed around the lower left ribs and I feel like my steel cage around my ribs has changed to total iron with the aid of a few screws being tightened, I went into work.  Year end is a busy time for me but I couldn't concentrate and felt weak.  This morning I don't feel much better, my heart is heavy, my left side aches and for once I am feeling very very sorry for myself.  I know the results will show small growth, so why does small growth have to make so much damn pain!

Hubby has booked 3 holidays for us, we never booked anything more than 8 weeks in advance over the last 8 years then last year we booked one at Christmas for Sept 12, I just hope I will be around in August to enjoy them all.... yes I know its silly and August is only 6 months away but within the meso world we know how fast this cancer can go from standing still to damn right aggressive.

Even my right side is hurting more than normal and a few pea's (the princess and the pea story) I can feel in bed are more than they were this time 6 months ago. 

I feel that I am lost in an ocean of uncertainty, I know that the oncologist will have nothing to offer, not even hope that there is something we can try.  I am all for giving chemo another shot, even though my brain is telling me if I hadn't had it maybe the meso wouldn't be so active now - Stupid I know because I took the chemo because the meso was too active!

I know that many are in the same position but at least surgery may still be an option if they have had too much chemo, me I have had it all really and what do I expect a miracle to pop its head up and say I'm here try me.  A little like Alice in Wonderland, wish I could find that magic potion. 

Well, sorry to depress you but I need it out of my head and the only place my hubby doesn't see is here.

I glanced at a report today that said those who had the EPP instead of decortication had longer odds, so why in the Uk do we do mainly decortication.  I was scheduled for the EPP but came out with my lung, at the time I was overjoyed, maybe now I should have asked why leave the object that has all the cancer cells?  I have to add there though that surgery only guaranteed 2 years and if I got 4 I was lucky.  I guess I get jealous when I read others have done so well and are hitting some 5 to 8 years after surgery and here I only had 1 year before those cells started again.  I guess I am just unlucky, but I should then think how lucky I am because I am still here.  This disease tears you apart time and time again.

Wish I could put my thoughts along with my meso and send it all to hell ........