Not in the mood

Twice in one day what is going on with me, well I'm having one of those days and if you read my blog you also know this is my release, release from the anxiety meso brings.   Firstly I forgot that chemo changes our bodies, ok you say your chemo was Nov last year so what's the problem,
I burnt when normally my skin wouldn't even notice, it's the first time it has seen sunshine and those precious damaged chemo cells have never had sun on them before.  People and here I mean those around us, think they know how we feel, think because we are inactive, don't have anything wrong, they don't seem to accept that our body is working twice as hard to keep us in inactive, that we are trying our hardest to be normal, but tonight I think I have fallen off that emotional washing line, maybe I haven't changed the sheets for a long time and the line has got tight, tonight it sagged and hit rock bottom.  If I hear bless you one more time I swear I could commit murder!

But I'm on holiday so I should be happy, but holidays can be tiring, especially a cruise plus it's a place of food, walk, food, talk, shower (again) food, drink bed, shower, breakfast and on and on, I feel like a spoilt brat and probably am acting like one but I feel like I don't live my life for me, maybe tomorrow I will feel different but here now at present I feel like I am an imposter, the smile is false, the person inside just wants to shout stop the world I want to get off!

Pain and sunshine

The hot sun has certainly warmed those ribs up and taken quite a lot of the normal meso pain from the highs to the lows on the 1 to 10 scale but the pain in my butt, sorry it is a pain, and down my leg every time I sit in a certain position is driving me to distraction.  I believe the rolling of the boat has helped with the bile as I don't feel so sick on a morning.  Wonder if hubby fancies moving into a canal boat for the rest of my life!

Seriously though I moan about the cold of home and how heat helps and it truly does but the pains still haunt us.  I'm talking about pain more today because catching the few bits I can on Facebook I see Debbie is really suffering and for her through this unpredictable journey of meso, it's a first.

I have suffered pain long before diagnosis and my heart feels heavy for her, there is no golden tablet that takes it all away, it hovers even with a large dose of morphine.  Our life's are just one long round of pain, once it stops in one area it starts in the next, each nerve fighting with the next to generate the most pain and be noticed by the brain to remind us how fragile our body really is.  Pain is the ultimate bug bear of this disease in my eyes.

So another new day of exploring for us, the one thing about cruising sometimes is we dock at industrial style ports and today is one of them, just tried taking a pic but can't on the iPad!  I have been pretty much out of contact, it seems strange not having email everyday or being on Facebook for a couple of hours, technology has taken over my life.  I brought my 2nd book to edit but have I not read much, on a cruise you don't seem to find reading time.  We have made friends with some amazing people which has been wonderful.  We were supposed to have dinner with the Captain last night but were ordered to ditch him so we could all eat again together, today will be our first day alone as our new found friends have booked tours so maybe I might just get some proof reading done.

Good news too, if I haven't already posted, Debbie has also been asked to be an ambassador for Mkmrf, Hopefully this will make the charity more well known in the South of England, again helping bring more funds to keeping the tissue bank open.  

Oh well, it's a hard life for some of us, had better think about showering and having breakfast, how is it you eat much more on holiday than you ever do at home?  Hubby's pot belly has increased another 3 inches and mine, well lets just say when I sit down it flops over.

As a friend recently said to me "we are still breathing" so to all of us, long may that continue!

Sunshine and cool breeze

I feel naughty saying how beautiful it was feeling that heat on my bones yesterday.  We docked at Kusadasi but stayed on board.  The gauntlet of getting through the duty free shopping centre put us off, apparently the vendors chase you all the way, certainly not something hubby enjoys.  But we came for heat more than anything else and yes my bones soaked it up, although my muscle/nerve hasn't improved.

We have intermittent Internet service so have had a hard time downloading Facebook although I have logged in I can't see anything just keeps loading.  To my fellow warrior Mavis I hope she has digested her bad news and put some plan of action into her thoughts.  Being told your meso is back is never easy then wondering what you can do is harder still.  We don't have the choices on treatments that others have.  I know I put back my own treatment when the meso was back in 2010, but again each case is different, hence making mesothelioma the killer cancer.

Well we have just docked after sailing all night, Mykonos looks quite inviting, when I worked on Santorini a friend worked here but that was some 28 years ago (at least) like all islands changes will have occurred.

Better get ready, breakfast then off to discover the island.

News from the med signing off.

The Joys of Packing

I still can't shake this mood of doom or get off my backside and be active.  But today I did pack, early for me as I normally do it the night before.  I'm just afraid that after work tomorrow I will feel like just wanting to sit and stare at the computer screen.

 

I have pushed myself and finished correcting the first draft of the next book, that has also been downloaded to my kindle so I can read it on hols and mark any further errors.  At least my bad memory is good for something as I had forgotten the story and the ending, the last few chapters I was on the end of my seat wondering how it was going to come together!

 

Another worry about my memory is my book is advertised for pre-order on Amazon as a paperback, I can't remember doing that, nor can I get into an account to see how I did it or more importantly, who has pre-ordered it.  I am getting a little worried but hubby keeps brushing it off by saying I am over tired.

 

My leg also is getting worse, thinking I have a trapped nerve in there, I daren't let my imagine take hold, just in case.  Although last night I made myself sleep on my back and didn't place a pillow in between my knees.  I got into this habit when I was so thin that my bony knees rested on each other.  At least my bloods came back ok but I am having a few little ripples of pain in the third boob and right back, I have to hope that my short cycle of alimta works for longer than the last time, 4 months stability isn't long enough for any of us.

 

I actually got out with the dogs in the fields yesterday, the sun shone and the breeze was warm, I couldn't believe it, nor could the dogs both stayed by my side the whole time.  I left hubby with his camera and went for a walk in the woods, spying a couple of deer I tried to keep the dogs quiet but Lexi started singing, (yes she sings) and they heard so I watched them spring away in the distance.  It was good though, we were out about 90 minutes and it filled me with a I need sun and today was just a taste. 

 

I hope the weather will be nice when we arrive on Tuesday and no storms at sea, on Friday I caught up with an old friend.  She owns a spa called Broom Mill Spa about 10 minutes away but I haven't made the effort to go for nearly 3 years.  I was greeted like VIP when I arrived, it was great catching up, the children have grown so much I didn't recognise them as they came to give me a hug.  Both daughters are truly beautiful young ladies.  I got my finger nails and toe nails done as well as waxing those eye brows.  We are both to blame for the absence in seeing each other, she has been busy keeping the Spa busy in this economic down turn together with running around after the children etc, although we both keep meaning to get in touch something called life can get in the way.  I have promised once I get back I will at least see her once a month.  Mind saying that I said that to my two best friends, So far this year I can count on one hand the amount of times we have been together.

 

Hubby told me today he has managed to lose half a stone, I have managed to lose a lb, still I have packed a couple of pair of tight summer trousers, you never know I may still lose a few more so I can wear them!  I hope he can carry on losing it would do him the world of good, like me it is all on his belly!  I should have had it written into our marriage vows, and no fat stomachs!

 

One last word, I hope Mavis gets a good result tomorrow, I know she is worried, as we do, we can only hope her stable inactive continues, and if you are receiving results yourselves, I hope you get the same.

Why Use Lawyers - The American Way

Over the past years us sufferer's have become vigilant over which sites we visit due to our names being used and sold on to lawyer firms, more so in the USA than here in the UK.  Always one for searching information when I can, I noticed how many sites are backed by Lawyers in the States or have large sponsorships paid to them. 

 

The one's that inform you are fine, like Mesotheliomahelp.net say they are backed by a Lawyer Firm, as do many of the larger Meso help sites, but some are sneaky and can get you to give your name and address up front, promising to send you a book on meso.  I came across one only last week.  Even though checking out the website and clicking here and there I couldn't find any affiliation to a lawyer's company.  I filled out the info, to see what would happen, sure enough I was contacted by a lawyer. (I didn't want a book by the way I was researching!)

 

When I was first diagnosed the only sites that had information on Mesothelioma were a couple of Lawyer sites  in the states and they said what they were, although these days this has moved on, from the 4 pages on google back then to the 400 + pages on google today.

 

We do need the large corporates to sponsor some of the sites otherwise a lot of information would be lost out there to many of us, when do we have the time to track everything down on the internet.  But there are so many.   

I asked a friend in the States to write about why Lawyers are important in the states

Lawyers Can help Mesothelioma Patients Get Much Needed Financial Relief

Some doctors estimate that mesothelioma treatment in the United States can cost anywhere from $150,000 to $1 million, depending on the number of doctors’ visits, cost of surgeries and lengthy hospitalizations, chemotherapy and radiation therapy.  Most individuals, even with insurance coverage, cannot afford the high cost of treatment for the disease.  However, for those eligible for compensation from companies responsible for the disease, the payment they receive can help cover some, if not all, of the associated costs.

The hazards of asbestos were first identified in the 1920’s, but for years companies ignored the dangers and subjected millions of workers worldwide to the risk of developing mesothelioma or other asbestos-related diseases. Common occupations with a high incidence of this disease include plumbers, pipefitters, boiler trades, auto mechanics, Navy veterans, merchant mariners, electricians, carpenters and many other trades that used asbestos-containing materials without being warned of its lethal effects.

Managing the associated health care costs for mesothelioma is one of the major concerns of mesothelioma patients. Some patients are forced to end treatments early due to their inability to afford further care.  Others continue to build debt until they are left wondering how they will cover the bills. 

In fact, according to a study conducted by Harvard Medical School, medical bills are responsible for close to 60 per cent of personal bankruptcies in the United States - with 75 percent of those individuals having health insurance.

The tragedy of mesothelioma is that it could have been prevented, and is most often caused due to the negligence or recklessness of companies responsible for ensuring the safety of its workers. Having the companies pay for the workers’ illnesses is one way to hold the companies responsible for their actions.

Asbestos litigation is the longest running mass tort in U.S. history, with the first case filed in 1929. Countless people in the United States have filed lawsuits after being diagnosed with mesothelioma, asbestosis or other asbestos-related diseases.

Many people that do not understand the devastating impact mesothelioma can have on a family believe that mesothelioma lawsuits are frivolous.  What may not be clear, however, is that some companies broke laws, tried to hide information and failed to provide adequate protection to their employees – all while knowing mesothelioma was a real risk to their employees.

In 2011, the New York law firm of Belluck & Fox, LLP, secured separate verdicts in the United States of $32 million and $19 million in cases involving individuals who contracted mesothelioma after being exposed to asbestos.  The companies in the lawsuit were found to have acted with reckless disregard for the safety of others.

Deciding to pursue a claim against the companies that caused your mesothelioma should not be taken lightly. A lawsuit can help a family recover from the financial impact of the disease. However, legal action can be stressful, time-consuming and physically exhausting for a mesothelioma patient.

If you are considering pursuing an asbestos-related case, you will want to retain a law firm that is experienced and successful in the courts when dealing with mesothelioma and other asbestos-related diseases. You will also want attorneys to represent you that have a passion for helping mesothelioma victims and are compassionate toward their clients. No amount of money can bring back a loved one that has died from mesothelioma, but financial compensation can help the families begin to rebuild their lives. 

We may condemn them but without them sponsoring Mesothelioma websites or research foundations we would be short on information and organisations like MARF wouldn't be able to carry out their help to mesothelioma sufferers. 

Who are Belluck & Fox, well they are the lawyers who keep Mesotheliomahelp online.

Lazy Bones

Once over I was a busy girl, never sitting still, always on the go.  What has brought this about you wonder, after all I have just written 2 books, but you see that's it, I am sitting on my bum all the time looking at a computer.  Which I don't class as work.

 

We have the decorators coming in tomorrow (something I would never have done years ago, as I did it all myself) and have I done much in preparation ... No.  I should have had the room emptied, all the skirting boards dusted, the curtains down and washed.  Instead I have left it thinking Gary would.  He told me he had sorted the bedroom, when I looked in everything was still there, he had taken down 2 pictures.  So I have pulled some furniture out, took the curtains down, although haven't washed them.  Thrown the bedding in the washer and I just hope the painters don't paint over the dust!

 

I am also upset because I pulled out the clothes I always use for holidays, you know the white trousers, the cut off's, the shorts.  Over the years I add to the collection if I see something nice.  Last year I had started to put the pounds back on but it didn't bother me if the waist was a little slack.  I have noticed how swollen my stomach has been for quite a few months now so I tried my favourites on.  They are all so tight, three pair of summer trousers don't fit at all, (one beautiful classy pair from last year) my regular cut off jeans I can't even zip.  The rest are well all I can say is I have 10 days to lose this belly. 

 

When I sit at the computer I have a packet of fruit gums by my keyboard, and then when I sit and watch my hour's TV I have another packet, or liquorice.  It's like hand to mouth habit.  My sugar intake has gone through the roof over the last 12 months but recently it has all landed on my stomach.  At first I thought it was good because I was starting to go from pin thin arms (8st 2) back to normal, (9st 7) but I guess I just don't exercise enough to ensure it doesn't sit in the one place after it managed to build the rest of me up, I climbed on the scales and am 9st 13, ok not that heavy but all around my stomach, that must weigh a stone on its own!

 

On top of that I drank a lot last night, not my normal but having felt so low recently and then the clothes thing I let my hair down and ended up with a hangover this morning.  The one that makes you want to lie on the sofa with a blanket over you.  To be totally honest, I have felt down recently and I can't understand why.  I know I have already told you this, but still why am I feeling this low?  I have everything going for me, well if you forget the mesothelioma and the hiatus hernia, but a wonderful husband, the dogs, good friends, work, writing, and inactive disease so why am I feeling this low?

 

I heard from Mr S today, he was diagnosed with me, although in his seventies now, he was only given 3 months to live last October.  I advised him to see J Steele who put him on the 3 chemos, he hasn't had shrinkage but the good news is the meso hasn't grown any further.  He has a large tumour hanging from his aorta and now a new mass on the chest wall.  I am thrilled that JS was able to help.  He is another who has no pain, not even from the original VAT he went through the same day as me.  I wonder if women's bodies respond differently to men's?

 

For all my hard work for healing I was also awarded the Anne English Healing Award, I can't understand how so many voted for me because I only go to one service a week.  I must admit I am thrilled but feel I don't deserve it.

 

The date for my next scan arrived, its in May.  Hubby has done a "Why Have a Scan" routine again, I told him that it's good to keep track of what the meso is doing.  It's because he doesn't want to know and thinks I should do as he says.  He doesn't see it from my point of view, if my friend has decided to grow then I need to know so I can plan what I will do when summer is over.  He seems to think if I know it's going to ruin our summer!  I said back, funny last year I knew how bad it was growing but I made a decision to have summer free of treatments.  I know this is hard on our partners but hey it's not there bodies that feel crap every day.  He gets a grump sometimes if I don't go with the dogs because I think it's too windy.  He is superman, with a fat belly and lots of fat everywhere else that keeps him warm, he doesn't mind a balaclava over his face, I can't bear anything over my face, maybe too many memories of oxygen masks for me.  He doesn't ache when having to walk through the muddy ruts or keep having to stop to catch his breath, blow his nose because over exertion makes it run constantly.  See told you I was having a bad time.  That's another thing, when we were courting he told me to shoot him if he ever had a big fat belly, I reminded him of it once and I got I am what I am back.  Never trust a man.  Why is they stop caring what they look like?  When I would ask him if I was always so thin he would say you are always beautiful in my eyes, what answer is that?  If I ask about my scar he says he doesn't notice it, I bet if I had a great big lump of meso growing out of it he would say the same.

 

Why is living so hard?  I should be jumping around, if this holiday doesn't bring me back up to happy Jan I think I will go mad.  In all the years I've been diagnosed I haven't felt this low, I can't talk to anyone so I am off loading on here.  We need a release and this is mine.  I hope if you are feeling the same you find a way of getting it off your chest and finding your way back up.  I could say a good cry may do me some good but I have nothing to cry about.  I hope my bloods come back and say I am run down, that could then be the reason I feel so low and have the energy of a slug.  Which reminds me I was brushing Bear and one dropped from his coat.  Yak!

 

Well that's me for the night, this miserable person is going to make a cup of tea, without sugar I hasten to add.

No Breeze

Hubby has got himself excited, there is no breeze outside which means I will go for a walk with him and the mutts.  Problem is I can't, I'm waiting in for a young IT lad to come and see if he can fix my problems with uploading the edited book for Kindle! 

 

Typical a nice day out in the woods and I can't go.  As with all youngsters, you ask what time and they shrug their shoulders, time doesn't seem as important when you are young.  Anytime was the shrug or when I get there.

 

I started a new regime of treatment for my bile today, although I am waiting on taking the tablets that have also being prescribed, they are antibiotics and really I don't think I want to start long term on something as dangerous for a hiatus hernia.  The other is a powder you sprinkle on water or juice.  Problem is it's 4 times a day and you can't take tablets after it only 1 hour prior.  This means I will have to become better organised at taking my morphine on a morning and night.  I don't like taking meds unless I really have to.  Wish there was some form of exercise out there that could pull my stomach back out of the chest area!

Hubby took this yesterday of our daffs in the garden, a reminder that spring is really on its way.  For all our sakes let's hope it is around the corner.  I think everyone, not just us meso sufferers, needs to feel that sun on our bones.

 

In October 2011 I was shocked to see how thin I was, getting on the scales I was only 8st 2lb, it took a lot of eating to start keeping weight on, plus I believe the chemo killing my friend meso has helped.  I know I am getting fat as my belly looks like I am 6 months pregnant so last night I climbed on the scales, 9st 13.  A little too heavy now, although right for my height it is all around the middle.   The thought of me in a bikini sunbathing brought a sour taste to my mouth.  I have a week to try and lose half a stone as that all the new summer stuff I bought last year won't fit! I have pulled a few things out for hols and put them in the spare bedroom.  I looked at the trousers but haven't the energy to try them on to ensure they fit.  What am I like, useless I can here you scream at the screen

 

I have to be honest too, the last few weeks I have felt down, maybe down is too strong a word, but I just can't be bothered with anything.  The thought of packing makes me feel ill, I have a lot of work at work to do but can't get motivated, websites need updating but I just can't find the enthusiasm and then proof reading, my eyes get too tired.  I feel bored, maybe that would be a better word, yet I have so much going on I don't know how I can say the word.

 

Its that perpetual circle, get up, take 90 minutes to feel human, get showered, go to work, come home, eat, work on the computer, watch an hours tv go to bed.  I blame the weather but maybe it is me, maybe I am becoming lazy.  The doc thinks I may be anaemic, hopefully this is the case, as I don't like this person I am becoming.  Hopefully this holiday will lift me and I will find Jan underneath again.

 

Enough of my problems, we all have them, just I really don't know how we get through them sometimes.  Adding to everything else I have just been told I have been awarded The Anne English Healing Award from Darlington Spiritualist Church.  This is a lovely honour and one I can't understand being given to me.  Anne was a wonderful healer, having fought cancer herself several times she died of it a couple of years ago.  I think she would be pleased an award was created on her behalf but I know many more healers that I think should have received the honour.

 

Well I guess I had better decided on what to do, probably proof read until my little IT guy arrives.  I would rather write, I have so many stories racing round in side my head when I come out of the shower.  Not enough hours in the day or maybe I just manage them badly.

Calling the Mesothelioma World

Dear All,

I have been requested to ask you all to sign a petition, Please read below and if you can possibly help then do so.  You can also sign here without leaving an address or location.

My name is Susan Vento, and I am writing to you about a cause that is very close to my heart. On October 10^th 2000 my husband, Bruce Vento, passed away. He was serving as a congressman for the state of Minnesota when he was diagnosed with pleural mesothelioma, a very rare cancer that is caused by asbestos exposure and kills 90-95% of its victims.

Recently, asbestos companies have been using their political influence to introduce a new bill. It is called the “Furthering Asbestos Claim Transparency Act” (FACT Act), and it will delay, and in some cases, deny justice and badly needed compensation to people suffering from asbestos-related diseases. You can find more information on the bill here.

Because of your influence and experience in the online cancer community, I am reaching out to you to ask for your help. I am a spokesperson for the Asbestos Cancer Victims’ Rights Campaign (http://cancervictimsrights.org). The ACVRC is a national campaign dedicated to protecting the rights of cancer victims and their families.  I hope that you will join our fight to defeat this unfair legislation. Here are a couple simple steps you can take to make a difference:

 1.    Sign the petition to stop legislation that threatens cancer victims!

Go to http://cancervictimsrights.org/take-action/sign-the-petition// and follow the instructions to sign the petition at the bottom of the page.

 

2.    Spread the word!

Share your thoughts on our cause and the protection of cancer victims’ rights with your blog audience. Place a link to our petition on your blog to allow your readers to sign and showcase their public support – every signature matters!

Thank you in advance for your time. Individuals and families affected by cancer already have enough on their plate. With your help, the ACVRC is committed to fighting legislation that further burdens them. Together we can make a huge impact!

 

Lets hope we can all make a difference, our voices don't get lost anymore as you know Linda from ADAO has done a good job in making congress stand up and listen. 

 

We say we need change and it does take a long time but unless we, the victims and our families, take up the battle then nothing changes.

 

Thank you on behalf of Susan.

Weekend Sunshine

I don't know where the time has gone since last Good Friday and this weekend.  I know we were all disappointed with the weather, I've never known such a cold Easter, but the last March we had when it was this cold I was only two!

 

I spent Easter Weekend literally typing, Easter Monday saw me complete my first draft of book two, I did just over ten thousand words that day and to be honest I was exhausted, both mentally and physically.  I mentioned my legs had been aching and more so my left, I have a feeling I have actually pulled a ham string.  Yesterday hubby made me do some stretches, painful as they were they seemed to have helped. 

 

Wish I could say about the headaches I have been having, not sure whether it's my eyes or not, but they too seem to get tired, more now than ever. 

 

I think I am hitting that age when everything starts to begin to fail, next I'll be wearing tener ladies!

 

Poor Debbie has been struck down by meso pain, doctors find it hard to match pain killers to this pain, and to be honest it is difficult.  Either it can be a stabbing pain or a continuous feeling of someone putting a drill into your insides or a constant ache.  Each of them requiring a different pain relief.  I know I live on morphine, and yes other pains still get through.  When the meso is growing it too can cause its own pain together with nerve damage pain.  It would be wonderful if they brought out a tablet that killed it all, instead we find we have to take a combination of drugs to get on top of it.  As the years have gone on I have never got on top of my pains, some become background that you feel all the time but your brain stops telling you how much they hurt.  Our bodies are amazing and at times I guess we don't appreciate them, until something goes wrong.

 

I know if you read this blog you have probably read everyone else's, but I still would like to thank Linda and the people at ADAO for doing such a wonderful job at the conference.  I wonder why ours aren't as big as those in the states?

 

This has been the first weekend for weeks that I have actually been over the fields with the mutts, it was great yesterday as I watched 5 buzzards flying over the trees, hopefully they will nest close so we can watch them raise their young.  Today a deer stood staring at us for quite a while, although it is wonderful I do wish they would move, if I was a poacher, which have been reported in our area, I would have had a clear shot.  But for being out, no wind, we even had sunshine!

Our hols are coming up and I must start thinking about putting the summer clothes out, I am becoming lazy where movement is concerned.  I just can't seem to pull energy together to do the things I could.  I just seem to lack enthusiasm for things at the moment, but am sure that is down to no sun!

My meso had better stay away from my pericardium this year, I need a long flight in November to catch some warmth to get me through the long winter months!.

To everyone struggling with meso treatments my thoughts are with you, to those of us who are inactive but stable, let us keep it that way.  Special thoughts to Tess at the moment and to Mavis who is waiting those all important scan results.