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 really like 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.

Wednesday Morning

I didn't feel awfully tired mentally last night so stayed up till 11 and watched my recorded The Returned.  What a disappointment in fact what was it all about!  Spending 6 hours watching sub titles and to be no wiser than I was when I started watching it.

 

I am debating on healing today.  Wednesday is our healing service day and I certainly could do with some hands on.  I know that the ladies have been sending me absent healing, but to feel those hands warm your back, sides or shoulders up, well that's a different thing all together.

 

I went into work yesterday for a few hours, but sitting at my desk is still affecting my back, whether it's because I keep lifting files up with my left hand I don't know.  Also my tummy did feel a little better yesterday but by last night seemed to harden again.

 

This morning I have woke up with a pain under my right arm, when I breath it hurts more.  I can't do anymore than I am doing at the moment.  I have set the balls in motion, hopefully a visit to Prof Fennell will give me a course of action.  I have wrote to J Steele and Peter at St Barts but one has just returned from holiday and the other is going.  It may be a while before they catch up with paperwork too.

 

I helped hubby in the garden yesterday afternoon, well I did a little of help, I cut back a couple of branches on a plant that has overtook the garden gate!  Then I helped pick up the branches and leaves he had cut away from the trees that have shot up.  They needed chopping as light in our office is weak, looking out all I could see was green.

I really don't know what I feel at the moment.  I have lifted my slow release morphine by 60mg a day yet I can still feel pain.  This new pain under my arm for instance, what is that all about?  I do want to live, I want to stay around as long as possible.  I read on fb a lady said she told her team she wanted 10 years.  It reminded me back to my first oncologist.  I asked how many years after chemo, she said maybe 5, I said 15 would be better, she said I think 5 so I went for 10 as normal and 5 fighting.  As it turns out I've fought this cancer nearly every year I've had it.  Remission has played a cruel game with me but then again I am thankful that I am still here.  But then I am frightened of being in so much pain that nothing can control it other than being knocked asleep until my last breath.  Then that will not be a life I want to live. 

 

I am scared of starting chemo again, especially after such a severe reaction in November, but if I don't then I certainly can't treat the symptoms that are starting to show.  The ascites being a new one, the right lung now coming out of dormancy and bringing with it pain in the right shoulder and back then the fluid.

 

There again, maybe a trial will stop all these things, but when you are in this predicament you want something tried and tested to stop everything so you can stay alive and be with those you love.  Yet to get there we need to take a poison that makes us feel so unwell while on it and a while to get over. 

 

So I had better move, if I still feel so uncomfortable after a shower not sure whether I will go into the office, but then it's another month end.  Don't these weeks just fly past, even more so when the sun shines.

 

My heart goes out to many of the meso community at the moment, so many new faces are appearing and so many of the regulars are back facing treatments.  Please God, let us find something to knock this cancer back.

 

 

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!

Trapped indoors

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

I can't believe that 2 years ago today my mam passed away, the time just seems to go by so quickly in one respect but slow in another.  It seems longer than 2 years since I last saw her but it doesn't seem like 2 years since her funeral.  I was going to go to the cemetery today but the weather has knocked that fully on the head.  I am sure if she is watching from above she will understand.  But in my mind my mam isn't there, she is in the places I go, home, work with the dogs. 
 

After Thursday's aromatherapy, which for the first time in ages I fell asleep on the couch, I felt totally relaxed so when going to bed I thought I would have one of those wonderful uninterrupted sleeps.  Instead I visited the bathroom at least 4 times before 3 am and then I couldn't keep warm, I again felt like my breath just wasn't getting into my lungs.  This cold during the night can really set our breathing erratic.  I woke hubby as I crept next to his body to get warm, which then caused him to find it hard to sleep again.  I wonder why this happens?

 

I have noticed that since dropping the morphine by 20mg per day I haven't had any other pain so am deciding on dropping it again, less morphine helps the liver produce less bile.  My pains haven't been as bad, a couple of heavy chest pains but I am sure that is the hernia problem rather than the meso problem, after all I am stable and will remain so for as long as my body can hold back this rotten cancer, in my mind that has to be a couple of years.  I read about people who have had maybe one or two treatments to combat mesothelioma over a period of 4 or 5 years, whereas I have had far too many and not enough remission in between, therefore I have told my body that this time remission will last for years and it had better not let me down.

 

In the USA a couple of gatherings are happening which bring together specialists from all over their country to help find a cure and discuss trials that are taking place.  In the UK we have one meso care day and one action day.  We don't have full on access to specialists who are willing to talk one to one, maybe Mesothelioma UK could incorporate something like that into the Carers Day in October.  But more so it would be great if we had specialist centres for Meso up and down the country. 

 

All this carry on over shutting childrens heart surgery down around the country is ridiculous, why should families have to travel more than a 50 mile radius to get the best of care.  I thought in this day and age things were improving but it seems the health service is sliding backwards.  They say it is better to have more facilities at one hospital than have two smaller units, I say they should think about the families and travelling to such facilitis, especially baby units.

 

For those without Kindle and who would be interested in reading my book and helping charity please have patience, I am looking at getting it printed to sell on the blog and hopefully Chris will also sell them on her site.  I am still in shock that hubby wants me to write a proper book on my journey with meso, not just the short pieces I put on my website.  This may be hard because I would then be writing all the emotion we went through, the struggles of being alone back in 04 without the help we have today and of course, opening up old wounds that we put behind us.  You see I march forwards and try not to look back as much.  I guess I will see how I feel and who knows may put words to screen (not pen to paper). 

 

It was wonderful news to hear Steve has had further reduction and is now stable, he managed the full course of his chemo and I hear the champagne went down well.  I hope if you are on or having treatment right now you will benefit from the same results.

 

I am hoping that Nancy will do another article for me shortly, it will be on lawyers and their role in helping mesothelioma victims receive claims and how to stay away from ambulance chasers. 

 

On that note, have a good week and stay well.

Update on Blogs

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

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

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

 

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

 

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

 

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

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.

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.

Weekend Gone

Its been an interesting week where blogs and postings have been made.  Linda wrote a good one about the new support group that has been set up, sounds very interesting and hopefully it will carry on to be the same.  Amanda has written more on new trials, Mavis has been doing a few talks with Doctors and Specialists and Debbie is in the waiting for Scan mode.  On Face Book someone wrote they had been cured from Mesothelioma, sorry and all but I don't believe there is a cure and no one should post such an outrageous statement, it also coincided with the release of a book she has published, which left me feeling a tad suspicious of her reasons.

 

On the home front I have had a week of up and down, feeling healthy one minute and totally wrecked and in pain the next.  The flash headaches and concentration being one of the worst to deal with but those terrible mornings have returned.  Not only with my stomach feeling much worse but everywhere where my cancer resides has hurt too.  Hubby's suggestion take morphine, I on the other hand am trying to keep my kidney from having to work overtime and won't touch it.  Take yesterday, I felt dreadful when I got up, pulled round with coffee and computer then went into work for an hour.  I came home feeling the same but instead of sitting down and relaxing I baked.  I can't let this mesothelioma or treatment take control of my life again.

 

Today the air was still, no mist but a good ground frost so after I took 2 hours to pull round and get my aching bones moving we took the dogs over the woods.  Any form of exertion makes my nose run, I wonder if this happens to anyone else?  It even happens when I'm baking, having forever to keep blowing my nose!

 

Bear didn't find any pheasants to chase but the scenery around the woods today was beautiful, the rich greens of the grass, the browns and reds of the trees.  We have set up a few bird feeding places among some of the trees, seems a squirrel had a hard time trying to get into the nuts and pulled the feeder off the tree, unfortunately the top stayed insitu so he gave up, leaving his scratch marks all over the lid.

Bear gives me the hump if I haven't been on a walk with him so no doubt after today I will be back in the good books, fingers crossed. 

 

I have made an appointment with my GP for in the morning, I hopefully can discuss my thoughts and anxieties about the chemo lounge and the fact that I can't lie about using elma cream.  If I am to go private I need to get this set up in 3 days as I don't want to delay the chemo for a week, not while I am still in pain and believe the poison is truly doing its job and killing all those nasty meso cells as they divide trying to make more nasty meso.  If I was right and when I had the last one my body was starting a session of growth then I hit it where it hurt, unless, and I really shouldn't air this, it has the opposite effect and the meso gained strength from the chemo.  It is hard, my oncologist is fighting to save the NHS and on Monday afternoon I will be seeing him about the next dose, I will also raise my concerns with him too. 

 

I do want to bring about change, change to the lounges we have, after all Bishop has plenty of spare room, it keeps closing wards or moving them around.  The other problem is if I do complain will it make things worse, as I believe when you say something negative about a hospital or staff they all turn against you.

 

If I do go private again and require more treatment further down the line I doubt I will have to fight for it like I did for this 3rd line of chemotherapy.  Decisions, why can't our lives be made easier when we have this to deal with instead of being made so difficult.

 

Our Lexi has been naughty again and peed in the lounge last night, not that we knew until Gary stepped onto it.  Bear came upstairs at 7 to get me up because Lexi was crying to go out, as soon as I opened the front door she was out on the garden so I never gave it a thought she would have done anything in the house either.  No I didn't stay up I climbed back upstairs and went back to bed, although I had to take a puff of ventolene because the cold air and the stairs had knocked the air out of me.  Yesterday Bear got hubby up at 6 because Lexi wanted to go out then.  I hope this isn't a sign of things to come with Lexi, after all she has been on those tablets a long time and they can cause problems to her organs. 

 

I wish Chris good luck, he was told several months ago he only had 3 months to live and to put his things in order.  I told him to go and see J Steele, surely there could be something, so tomorrow he starts on IPM or IMP, memory isn't working.  The only problem is he has to travel to London, stay for 2 nights, one the night before and one the day of chemo, then come home to travel again in 2 weeks for another drug, then back again the week later to have the first two again.  Its a lot of travelling when you are on treatment and feeling ill, I hope the treatment works for him and he doesn't suffer to badly.  This is what I mean about trials or other combinations, why we can't have satellite hospitals that will administer the drugs on behalf of the main trial centre or a different oncologist is beyond me.  They want people on trials but getting to them isn't that easy, especially if you are ill.  Mavis and Tess went through this when on a trial earlier this year.

 

It's Denise's funeral on Friday at Yeovil Crem if anyone would like to attend, although no wearing black, its a celebration of her life.  My thoughts will be with the family, unfortunately I will be into Day one of Chemo.

 

I guess that's it for today, I truly hope many of you are staying in that Stable bracket and for those who are on treatment along with me, lets hope we tolerate it a little better this next time round, I know Steve is in tomorrow for no 3 so my fingers will be crossed for him.

Still no warmth

It's now Tuesday and our boiler has been out 4 days.  It is also the 1st of May and generally we should all be out dancing round the May Pole (well maybe not me)  and celebrating the months to come as well as the months passed.  Keeping up with my fellow mesothelionian blogs and emails brings home the fact that we are all a mixed bunch going through various degrees of this cancer.

I have new friends just starting out on this journey, having to introduce the poison of chemotherapy to their healthy as well as ill cells, then those recovering slowly from surgery with pain and those recovering from surgery still having mesothelioma. Those who have finished treatments and back in remission and those not so lucky.  I don't know why this has happened to us all, such a mixed and varied group of people from one end of the world to another.  We get so wrapped up in our illness that many forget what our partners are going through too.

True, they aren't having the pain and the treatments, but they share with the worry and the death sentence that hangs over our family life.

Today I am voting 1st May as our Partners and Family Day, let us raise our glasses to them, for being there through this, for the support and comfort.  They have the same fears as we do but feel helpless because they are unable to take the pain away or kill the cells that grow in our body.

It is true people who you meet with always ask after the one with meso but never ask after the one who is giving support.  Are they not as important too? 

I have said so many times that I worry about hubby and what will he do when I am gone, that scares me more than death itself, many of my meso friends have said the same and I think it is important that we let our partners know how much we worry about them and care for them.

On a totally different note...

We have had a new friend in the garden the last 5 or 6 days, a racing pigeon that has got lost.  We have tried to catch him\her to return her\him but it is not interested.  It waits every morning to be fed on the windowsill and has made friends with a wild pigeon.  This morning it was wings at dawn, they decided to battle each other with wings clattering against each other.   Part of me hopes the owner doesn't arrive to take it away as these two certainly have something going. The only problem is that they are chasing the young cold tit's and blue tit's off, why can't they learn to share!

On that note must get a move on work is calling and I have a busy day, end of month and all that.  I hope whatever you are doing today is something that you want to do rather than something that you must.