Nancy gives us her insight into Mesothelioma

I do like now and again to ask another to write for the blog and thought it was about time that Nancy gave us an insight into why she writes about this subject and if anything, what she has discovered over the years.

Writer Turns to Mesothelioma Community for Articles and Inspiration

Nancy Meredith is a writer for MesotheliomaHelp.org. She has been writing a blog a day about mesothelioma for close to five years. Her topics include information about gene therapy, breakthroughs in chemotherapy treatment, clinical trials, helpful hints for dealing with mesothelioma, as well as profiling mesothelioma warriors. I have written guest blogs for Nancy, and today she is writing one for me talking about how she finds topics to write about and how the mesothelioma community has inspired her.

I have been writing about mesothelioma for five years, and I can honestly say I never tire of digging deep into the stories and news about this “nasty cancer.”  But unlike Jan who can write a complete novel about vampires in just three weeks, I often struggle for days to complete just one article about the latest mesothelioma breakthrough.

I believe it is critical to ensure that the information I present, whether it be about a clinical trial, a fundraising event, or the struggles a patient is facing, is from a reliable source or sources, could change the future of mesothelioma treatment and offers hope to those in the mesothelioma community.

There is never a shortage of information about mesothelioma, but weeding through it and finding legitimate stories is important. I am especially careful now after reading about the spoof that was done by Science magazine reporting on a cancer drug that was ready for testing in patients. (There was no such drug, and ultimately they suggested peer-reviewed journals as the best resource for accurate, scientific news.)

Although many people have asked me how I can find something to write about every day, Jan is one person who knows the answer: “Until there is a cure for mesothelioma,” she says, “there will always be news and stories of both hope and despair.”

Finding my topic of the day is not always easy. I search through newsfeeds, and spend hours poring over medical journals, hospital websites, health and government websites, and I reach out to experts in the field. I watch YouTube videos, read online forums and follow and “like” all things cancer related. Ultimately though, I have found that reporting on what life is reallylike for mesothelioma patients and their families makes the best articles.

Since I have reached out to the mesothelioma community, beginning with Jan, the stories I have been told have been uplifting, inspirational, and in short, extraordinary. While ‘researching’ these warriors, I am slowly pulled into their lives, and through my articles I try to convey the depth of their strength and resolve in a time of adversity. Each person and journey with mesothelioma is unique, and I try to find that one distinction among the patient that sets them apart – and keeps them fighting.

Don had his music, Mavis has her humor and love of camping, Billy focuses on his gardening, Lou has her grandchildren, great-grandchildren and her fight to ban asbestos, and Jan tells vampire stories and lays it all on the line to educate the public about the reality of mesothelioma. Mesothelioma does not define them, and it is their love of life that keeps them fighting for another day.

Each time I write an article, I have a goal to make a difference in someone’s life. I’m not sure if I’ve achieved that for any of my readers, but each time I write about another mesothelioma patient, the differences they make in my life are endless. Mostly, I have learned that no matter how overwhelming life's challenges and problems can be, we should all take the time to enjoy every precious moment.

About Nancy Meredith:

Nancy is a former IT professional who now dedicates her time to writing about mesothelioma. When she isn’t writing, she can be found teaching Insanity, a high-intensity exercise class, or running through the neighborhood. Nancy lives in Wake Forest, North Carolina with her husband and their dachshund, Scooter.



Nancy and Scooter Chilling out

 

As for the rest of the news, after having such a wonderful day Wednesday I thought all was well, I had showered, walked around the house several times and even gone onto my office computer.  Come to 10 pm and boy was I tired when this damn awful pain started in the centre chest.  I took 60 severdol and drained.  I left the drain in far too long as nothing was coming out but my insides were full.  It hadn't helped I hadn't emptied my bowels either.  By midnight we climbed wearily into bed but that damn clock came to 4.30 and bing I was awake.  My ear has pressure points on it, which at first woke me, then I needed to pee!  We kept the lights off as I slowly made my way to the toilet and then slowly back.  Gary was sure I would go straight back to sleep, so was I.  But no, I actually got into bed and put my good lung down, it took a lot of courage as my chest was painful and I felt full of fluid.  I did drop off, the next time I woke up I believe it was 7.00am and Gary said "please can't we lie in"  I wish, I thought.  I stayed till 7.30 but the pain was getting worse, plus all those toilet tablets were starting to work. 

 

I just managed to reach the bathroom this morning and boy was I emptied but unfortunately stomach ache followed due to the tablets, but I had nothing left inside of me to give.  An hour at least I sat with a hot water bottle.  Boy was my behind getting sore off that toilet seat.  I finally got up but the pain in my chest was getting worse.  We did what we were told and I rang the District Nurse.  They arrived rather quickly and gave me a 30 mg morphine injection.  It did take time to work but boy was I relieved, although since I had the injection I have been swaying between this world and dream world, my tablets never do that!

 

I am told that oramorph is good, the only problem is I take high doses of MST, 230 mg twice a day, which means as a one off hit I would need to drink 60 ml of the stuff, a large mouthful and not one that I would like to do. 

 

That's my news, I have gone 2 steps forward only to be knocked back by one, but at least I can still see the future.  My meeting tomorrow with the oncologist so I have my fingers crossed that radiotherapy will be offered to kill this sucker on my bronchial then maybe 4.30 will just become another time on the clock.

 

Good luck to Steve and Linda in Oxford who are due to see theirs, only problem they have, which is a big problem, water!  They are locked in by water, I just hope it ebbs away enough for them to escape and go and listen to the options on offer.

 

Lou in Australia has had good news, so good to get this as it lifts everyone.  No problems and 3 months of doing what she wants.  She has been asked by Pakistan to video link a conference they are holding banning the use of asbestos.  Well done Lou on being recognised as a voice of the meso warriors.

 

Thoughts to all out there, we have lost a few warriors again already and the year has just started, more new names are appearing in the community, this means more new people are being diagnosed!  When will we be rid of this disease, money and research is the key.

 

The Meso Bill was passed yesterday, I am not even going to go into it as I was disappointed, Mavis has done a full report on it on her blog, which you can read here.

 

 

 

 



  



Is it a Dream

Yesterday the sun shone, albeit through some clouds occasionally, but up here the temperature was nice, although hot for the dogs.  I went into work and forgot all my problems, once my mind was on the job I was just any other person. 

I was sent a fab supporters shirt from Nancy who also writes for Mesotheliomahelp.  In fact that is how we have become friends.  Each time I have worn it I have meant to take a photo but yesterday as I left the house hubby caught me.  So to prove I am supporting the Bulls, here it is Nancy.

It also helps cover my stomach although it makes a nice bump where Bulls go round!

I actually felt healthier yesterday than I have in days but this morning that seems so short lived.  I was up a couple of times with Bear, the heat is just killing him.  I tried yesterday to clip his fur back, even shave some off, will he lie there and let me - No!  I must have taken a bag full of fur out of him again though.  He decided he is now sleeping upstairs, I think he senses something is wrong with me, but our bedroom is hot in the summer, with two fans pointed at him all night he was still up and down.  At 4 he came up to me and shoved that big wet nose in my face, so I came down and let him out.  He did his business then decided he wanted to stay out, the sky was beautiful, a new moon was bright even though dawn was breaking.  So I left him out, leaving the front door open and the vestibule door closed.  At 6 I heard him pounding at the door to be back inside the house.  So I got up, he came in and went into the shower room.  He was getting too warm from the sun that was now truly up.

 

I didn't wake again until 11.00, my body hurt which made getting up just as bad as staying in bed.  It has taken an hour to pull round.  The weather outside is making me feel cold.  I had hoped to maybe read in the sun and rest as I have the energy of a snail but I can't see that happening. 

 

Something I should do is go shopping, we go on hols again in a few short weeks but nothing I own is going to fit around this stomach of mine and it isn't going down any.  Maybe the water tablets are holding back any new fluid but they aren't working on the bump I have in front of me.  But I just haven't the energy or the enthusiasm to do that.  I am becoming a miserable lazy person.

 

I still have mam's house to clear too, I am renting it out shortly and still haven't gone through her things.  I wish I could be ruthless and get rid of it all but I can't, yet what is the point of holding on to stuff?

 

I am making arrangements with Mesothelioma specialists for September.  Maybe I am being a bit stupid here as we all know how fast meso can change and I am looking at some 7 to 8 weeks before I actually see someone.  Yet I don't want bad news before we go on holiday.  It would spoil it if they said to me there is nothing left for me but to accept palliative care.  How would that make the holiday feel, the last one we will ever have together.  I am worried that this will be last we will have so I don't really want that confirming.  I have seen how fast this cancer can change from hanging in to outright killer.  It will be on my head if I have made the wrong decision about holding off.  I don't know how fast they will turn treatment round either and is arranging to see three different people all in the same field wrong.  How will I choose who to go with - I have no one to discuss the options with only hubby and me.  He is where I wish I had some help, at least we can air things on here or face book but deciding on what route to take to keep you alive is not the easiest.  Usually you have guidance.

 

Maybe an afternoon on the sofa isn't such a bad idea after all.  People who are healthy have days where they are sofa slobs but then I keep wanting to make the most of my time.  Lately, and I really mean this last year, I haven't been doing that.  I have wanted a hot summer at home so we can go places and visit them together.  So far all I have done is be ill and sit in the back garden!

 

I hope you are keeping up with my warrior blogs, at least at this time they are all positive which makes me feel better.

 

The sofa is calling, I hope where you are the wind isn't as wild and the heat isn't unbearable.

Meso -An Unfair Cancer

I have just read about my meso friend Lou and how she is now only offered trials in Oz.  We have come along way in our journeys, Lou I believe a year more than.  She too has had surgery and chemo several times and is far from giving up the battle to continue. 

 

What a friend said the other day, if we had diabetes then one cure may suit all but with meso we are all different, even the disease is different in each of us.

 

In the UK they have never really staged meso because it isn't that simple.  Say someone with T1 may have much more pain than someone with T3 but then T3 may die a lot quicker than someone with T4.  I remember J Steele telling us at a conference it wasn't worth doing, so if you are diagnosed and given a stage, forget it, it means squat.

 

What I always advise to anyone diagnosed, newly or not, keep records.  Since surgery I actually stopped doing that believing the meso would stay away for years, then last year I was starting to mark a diary up when pain came etc but again scrapped it.  After my chat with the lung nurse I know I am going to have to start recording temperatures, pains associated with meso, even down to when my eyes play up.

 

We all have an idea when things aren't quite right, but we don't always associate it with the meso.  If you want to learn if your meso runs in a pattern then keeping a record daily or weekly may help.

 

We are all a mixed bunch, us meso bloggers, four of us women have it and the wife's of two men blog on their behalf, then Steve in Oz blogs for himself, the only male I believe to do this.  We need  more bloggers to help those who are just diagnosed.  It isn't easy opening yourself up to the public sometimes but it is therapeutic because you get all what's inside your head out.  Although many do this on facebook too.

 

I haven't got lots to write today, the effect of losing friends last week still hangs over my thoughts, my own meso has affected my mood and knowing that maybe I have come to the end of treatments available isn't something to dwell on.

 

But its Monday, a new week and hopefully a better one, once I see the physio on Thursday maybe my leg\back will improve.  Just need to find a way to get rid of the heavy pain now sitting back in my chest.  Strange how just a couple of mm's can bring so much pain to a body.  I used to ask Debbie often if she had pain and her answer always no, until this year she was pretty much pain free.  I hope that is the way for many more but those who do have pain I feel for you, 13 years of meso pain has worn me out and prior with endo for another 14 years.  My body just can't take more.

 

On a bright note the longest day is nearly here, lets hope the weather remembers summer is here too!