Life and the internet

I have been lost without our internet, honest you would have thought my hands had been chopped off.  The Router decided to crash, one minute on the next off until finally it died.  Because of the complex set up I have at home with networks for work and home I couldn't just pop along to whoever and buy one, Monday seemed a long time away from Saturday I can tell you.

I have taken the step and tried to join Face Book.  Well I think I have, but I just can't understand how you find friends.  I don't like the idea of entering my email address in the box and it finds people I know, I think maybe a little dangerous as I could be giving out names that are then sold off for data services... or am I over cautious!

Wasn't the Queen a good sport for doing the opening at the Olympic's.

The loss of our internet hit hubby hard, not having sky (the tree's stop us getting good signals) so he was hoping to watch the coverage stream through the computer.  He wasn't a happy bunny.

I am making plans early this year for the Carers Day held in October, having persuaded hubby to come with one of our friends (who is helping me get my book up and running) and her husband. The men are off to the science museum and while we attend the meeting.  I wish I could get him into one but I have as much hope of that as Bear having pups - none.

At least I haven't done anything stupid for a week, no walking steep hills or climbing flights of stairs more than one storey.  All in all I guess things are ok, what can we say when each day brings something different. 

Sometimes I hear such sad stories about meso that I wish I had never heard of this cancer, let alone have it.  A friend in Oz has a partner who is having to be tube fed because of the meso, having to stay in hospital has contracted pneumonia.  Why is it when someone with meso goes in hospital they nearly always end up with this and I hate to say it but succumb to it?

Another friend of mine has let me know that things aren't going as well on the SS1P, she has a friend on it who hasn't done well and knows of a few others.  Why can't we just find the key to turn it off.  The thought of something hard and brittle developing inside my chest isn't a wonderful thought.

I emailed a friendly doctor of mine last week after my near killing myself expedition, he assured me my heart would be fine but meso has a nasty habit of growing on the structures which makes the pain that much more unbearable. 

I am sure keeping myself so busy with too many projects is keeping me going, I know that if I ever found the time to sit on my backside and have nothing to do despair would surely start creeping into my brain. 

I can see a little blue among the grey out there, typical need to go into the office today.  Hope where you are the sun is shining and meso is a black cloud far away over another planet!

Dealing with Mesothelioma

We all handle the diagnosis and getting on with it so differently, some of us hide, some of us face it like an on coming train, others cry, some have anger issues but it all leads to one path and that is acceptance.  We have to accept that we have been unlucky in the cards that we were dealt. 

At the age where my life should have been everything I wanted, money in the bank, good husband, nice house, career I got the biggest bombshell of my life.  44 and six months to live, thankfully I am still here and things have moved on.  But have they really, is the medical profession any further forward in dotting out the line that says what our meso is going to do next?

I would love to say that Alimta keeps the meso at bay for many years but I can't because we know that it only works on 40% of tumours, what of the 60% if doesn't work on (I think that now includes me) what do we have to help us starve the meso of what it wants.

I do hope that something comes along soon and that it works, I hear that the SS1P is doing well in the States, The Adams here is apparently helping, cryo would be wonderful on a few of my tumours that are causing pain - not going to happen is it!  We don't hear much about the other drugs that have been trialled and left on the wayside.

Do we know when we are ready to give in, some days with the pain I could quite happily say enough but I know I don't want to die, I just don't want pain.

My meso is depressing me as much as the weather, this path of life can be hard but we have to keep moving forward and always hoping tomorrow will bring something good.  Out there is an answer to what makes Mesothelioma tick, a researcher will find it I only hope its in my life time and yours.

Eight years On

Eight years ago today I was sat in James Cook once again in pain and this time he threatened surgery to see what was going on.  Today I thought I was going to end up in hospital again, my own fault though.

I have wanted to take the mutts to Hamsterly Forest for so long that when hubby asked what I wanted for my birthday I said to walk the dogs, how could he refuse.  He had said he had discovered a flat patch on a visit with his camera so off we went, dogs in the back along water and  bowl.  Twenty minutes still in the car driving around lonely single country lanes trying to find the entrance into the woodland that was flat, without any luck.  We finally gave up and took a track into the area.  Parked up and off we walked, we came across a slow bank down and turned this way and that, Lexi was pulling and Bear was plodding along. 

The weather was nice, a breeze but not to bad.  When we decided to turn back I spotted a short cut so said come on we'll go that way, well it was a steep bank up once we were part way in to it.  Hubby said I don't think you can do this, but as normal I ignored him!  Part way up I had to stop and take some Ventolin, I took Bear's leash and had him help pull me up the final part, it was a 45 degree climb.  I couldn't breathe but we were stuck in the middle of no where so I pushed and pushed till we reached the summit.  I collapsed on the ground, my chest was constricted and my heart beating fast.  It caused one of those heart wants to pump and is fighting for oxygen, lungs can't move because I can't breathe scenario's. 

I was waiting for the told you so, but hubby thought need an ambulance.  I stayed prone on the ground while he took off with both dogs, but Bear noticed I wasn't coming and sat down not moving forward.  Gary had to come back to me.  It took a good ten minutes for my chest to settle and my heart to ease.  I watched his worried face and I guess he watched my frightened face.  Never will I do that again.

 I nearly killed myself in the hotel when I did 3 flights of stairs you just don't realise how steep something can be and what damage it can do.  The harder the heart pumps, especially when it is already damaged, the more damage you do.

I didn't suffer from breathlessness until I had my operation, I never knew what it meant not to be able to breath, I should have as my mam had problems after her heart attack.  I was scared and thought this was going to be my last day.  To be honest I hope when I do die it is fast and sudden rather than the painful one that is ahead of us.

I don't want to spend my life wondering whether I can make a small hill or not but from now on I guess I am going to have to think before I act. 

So another year over that I shouldn't have had, how sweet is life!  I think a nice bath and an early night is in order this evening, I know it should be a glass of something but I haven't got the energy - honest.

8 years ago

Before I knew the name Mesothelioma, 8 years ago today I was starting with my usual bad neck, now having a walk in clinic at James Cook I knew when things got worse I could just walk in and see a doctor.  As my birthday looms it was that fateful day that he told me I would require to see the surgeon.  Yes I spent my 44th birthday sat in a waiting room in James Cook.  The XRay was the same as the previous month, fluid filled the pleura space and he told me I would be seeing the surgeon.  I had it drained off again that day, what a lovely birthday present!

At that time I was relieved that at last something would stop the endo or find what else  was making me so ill, this had been going on now for 4 long years, and over that last 7 months I was never without pain, my three monthly cycles had stopped. 

I remember seeing the surgeon on the 29th of July, Dr Owens, a very warm and enthusiastic man but he was direct.  He told me opening up the chest cavity was dangerous and would probably cause me more pain than what I was in!  I thought how can that be you'll cure what ever it is that is going on in there.  After all we were all sure it was endo.  So much has happened to my poor body since then.  The pain from the first surgery was bad, especially when he did a near decortication then, followed by another operation a couple of weeks later.  I still remember that first V.A.T, I was shocked when I was told I had spent nearly 5 hours in surgery, hubby was grey when I first saw him, not that I remembered much. 

You would have thought I would know better after that to then go through the next surgery in 09 to remove the whole thing.  Shame that Dr Owens hadn't done it then but who's to say I would still be here now.

I have deferred my CT Scan till August, and hopefully only get the results in September after we get back from the cruise.  I wish there was something I could take that wasn't toxic to kill this nasty meso, the thought of what I went through in 05 and 07 doesn't make my body\mind feel any better.  I know that there are a few people going through chemo now without any major problems and I truly wish I was one of them.  Seems to me those who have no bad side effects seem to do the best on remission, and I can name quite a few.

Denise is managing to carry out her normal daily life, a friend abroad is doing the same, Chris who went through chemo with me in 05 is still like an ox.  Maybe with being a few years older this time the chemo might have a different effect.

I have read that SS1P is doing so well in the States, I wonder if that trial would start up here?  It doesn't sound as toxin as chemo.  Why can't we just take a pill and be ok, like migraine or blood pressure.

I am terrified of dying, after spending a week enjoying the sun and relaxation it made me realise that life isn't just work, but even if it is it is a life I really do enjoy.  I can't imagine not waking up, but even worse I fear the end.  I know I have a long way to go yet but I am scared, I guess I wouldn't be normal if I wasn't frightened of dying.

A friend in Oz is so low and being so far away it is hard to help, her partner has the meso.  It is true us women are better fighters and don't give up so easily.  Either men give in or won't talk about it, have you noticed?  They feel they aren't being strong if they do open up or bottle it up and keep everyone at arms length.  I feel sorry for wife\partner caring for a man with meso.  I know men don't really want to talk about it, I find it hard having a conversation with my own husband, he doesn't want to talk or face the future.  I'll say are you ok if I answer no he has that look and then doesn't respond.  Maybe that's why I do this blog, it gives me a voice to air my thoughts and babbler on about everything and anything.

Lexi has gone to the vets so I had better sneak into the shower and yes, get ready for work.  Oh the joys of life!

Realisation of Mesothelioma

I have being complaining my side and lower back ache and blaming the bed in Spain. Quite likely it isn't helping but in the fog of my brain this morning I finally opened my ears to listen to what my body was sorry is trying to tell me, the meso is obviously thickening back in that bottom corner of the lung. I feel back to what it was like in 2007 before I had cryo. How I wish Dr Abtin and Prof Suh's treatment could be here. A little freezing of this could take the pain away.

I just wish I could face and do that long haul flight to LA but my lung doesn't take to being over 6,000 feet ,for more than a couple of hours these days, plus the airport in La is the most hostile we have ever had the pleasure to land in. Not forgetting the unfriendly finance department in UCLA! I really don't like pain.

Had a lovely semail from Linda, from the USA, yesterday, as did Debbie, wishing us both well, SOS nice that she still drops a line even though she lost her sister to this dreadful disease.

I have been grateful that I have managed to make my cyber meso circle friends, although like everyone, I wish it wasn't because we had this cancer.

Another friend in Oz is having a terrible time and feels so isolated. Seems palliative care at their hospital gives them the option not to do anything for the patient! If nothing more you would hope palliative would be better helping deal with the day to day problems. Seems no where in the world can handle this disease and yet they still want to use asbestos? I just read a book about fibres of this stuff and was shocked to hear it was used in sound insulation for speakers etc. The fibres of are too large for our bodies to discard and the wrong shape so how can they say that we can still use it, has the fibre structure suddenly changed? How can a natural fibre suddenly alter it's make up because we now know it causes cancer, come on governments grow up and take responsibility, do you want another crisis in another 20 years!

I guess I will have to try and find out who I report to now regarding this kidney area pain, I hope something can be done, unless of course if I start a chemo regime after the cruise in September, I've managed the pains for a few weeks at least, my brain has this way of trying to deal with pain, as I wake up my mind is like a file structure on a computer hard drive, each folder is an area of pain and it is usually hitting delete as my eyes open, unfortunately this folder is being very stubborn and won't go in dusty bin!

Flight home this pm so back home to the dogs and cold weather, have got a bottle for the sun but it just will not go in!

Till tomorrow

Runny Nose

I have noticed that when I do some kind of exertion my nose runs, I noticed this when out walking the dogs but put it down to the cold temperature but here I haven't that excuse. Everyday I carry the bag downstairs and then my nose is running for a good hour. yesterday I did a really stupid thing, armed with our beach bag and four towels I climbed two flights of stairs from the poolside up to our room. By the time I reached the top of the 1st flight I was suffering but kept going. when I reached the room I could hardly breath, my chest thought it was caving in and my heart was pumping so fast. Finding the trusted inhaler I didn't think I had enough wind in my sails to take it. I got caught by hubby, who had left me to go to the shop, he went banana's at me for not taking the lift and said I couldn't be left alone. I tried to tell him that we have to push ourselves occasionally to see if we have declined in health!

The sun is helping the cancer pains but the rock hard beds, only ever found in Spain, are killing my back. It's quite breezy this morning here, I really don't think the weather throughout the world knows what it wants.

Hopefully heat in another hour or two and back to relaxing on the sunbed with kindle in hand and another book read. There's a strange thing too, the fiction book
I'm reading is on about Mesothelioma fibres. I think it's the first time I have ever read its name in something fictional.

Breakfast is calling ..

Heat in the Bones

The sun has shone and the heat has made a difference once again. True to form I jinxed the weather and we had heavy cloud till 4pm today but it is still warm, sorry hot!

What a difference to wake up in the warmth and my bones not hurting, truly wish we could live somewhere where heat and sunshine isn't a problem but then the dogs would suffer.

So far have walked the bay everyday, ok it's flat here but it is still a long walk from our hotel down the pine walk.

Have sat back and started to actually read my creation, I'm now not sure about a couple of the first chapters and am fining spelling mistakes even though I thought I had corrected them all. Overall though I am enjoying reading it and feel quite proud of my achievement.

Hubby was up at 5.40 this morning armed with camera trying to capture some early morning bird pictures as well as the sun rising on the sea, getting quite arty in the family lately. I hope the sunshine I sent on order has arrived giving the UK a break from wind and rain.

Hoping everyone with pain finds some relief with the sun, I'm going to try and enjoy, no etch these days in my memory as pain free.

Sunshine!

I don't believe it the sky is blue and we are in, hang on still England!  This is the normal, we are going away today and we have what we all want here, beautiful blue sky and sun, this means that I will probably take the rain with me on holiday.

I truly hope the sun stays out and gives everyone here a feeling of wellbeing.  I know I am looking forward to feeling that heat on my bones, as well as looking forward to a week of relaxation.

Amanda I will try and send some sun home to you if we have any there.

Lexi already knew we were going before she saw the suitcase come downstairs, the guilt we feel leaving them.  She is singing, sounds like anxiety so we are worried once again that she will chew her self.  Bear is giving the big brown eyes and even gave me a love, which he doesn't do first thing on a morning.  How to tear at the heart strings!

Jan

My Book a fantasy as no mesothelioma allowed

Having spent most of June writing a book and then proof reading it, I found I can download it to my Kindle so I will be taking it on holiday with me. For the first time since letting my fingers fly over the keyboard or my eye's just look for mistakes I am actually going to read it as I would any other book. 

Only one person has read it and is in the process of finding out how to publish it, another friend has just started reading it (had to have something while she is handicapped with her foot in plaster).  If it was about meso then it would be quite easy but I have written something to take my mind off this cancer.  Maybe one day I may write about the last 10 to 12 years of surviving this miserable cancer but do I think the book is worth printing I don't know but don't we all want to leave a little something of us behind when we die.  I guess I do have an ego after all.  One thing I do know if it does go to print and makes some money, research for meso will certainly get some cash.

The week has had it's ups and downs but today as usual I plodded over the fields with Bear and Lexi.  I couldn't believe the height of the grass nor the amount of ferns we now have.  If the field keeps growing like this and we had some sun I would have thought I was in the jungles of Venezuela, not the fields of England.  No wild life today, no Deer hiding in the grass, the birds were even quiet.  Such a disappointment.

We came home and gave Bear and Lexi a blast with the blower, the amount of dead skin Bear has is unreal, but I did notice he is getting a bald patch under his front leg.  Maybe he sweats too much and the hair has stopped growing.  A visit to the vets when we return from holiday I think.  Although no red marks, spots or blemishes I don't think he should be bald there.

My stomach has been playing up badly again with every morning that yak feeling, my ribs are getting tight too but I am still here and hopefully will be this time next year.  Just wish we could wake up and feel great instead of waking up feeling crap.

I tried to join facebook but think I have done it wrong, I thought I could make a page but I don't know what happened to it or my account.  I must have a poor IQ if I can't even get facebook to work for me, what hope to I have in the future as I once again start to update all the works databases with the current software.  I use to believe if it still works don't fix it, but as time goes on with software changes you have to revamp every three to four years, although one database I created back in 2000 is still working.

Five days until we go on holiday, the thought of sun on my bones is driving me forward, shame it will only last a few days.  I can't believe we are already into the 2nd week of July and still no summer sun. 

I wish I could bring some back, especially for Amanda and Ray, a glass of wine in the garden watching the sun go down after a spending hours in the garden is the perfect way to end the day.  I'll keep praying, as my Canadian friend said in an email do we only know how to rain dance in this country?  I guess we don't even have to try, it comes naturally.  Still can't believe there's still a hose pipe ban in parts of England, are they kidding!!

Pains in Heart Feels like Ball & Chain

I know my meso is ATypical and does respond like most but at the moment I feel like I am having a growth period.  The last couple of days my heart has once again felt like a heavy lead ball has been connected to it and is trying to drag it down through my body!

My 3rd boob has also being doing a little more nipping.  I tried to lock both additional pains up in a box so that I could ignore them but no, this morning they were disturbing my sleep again ensuring I felt them.  All I wanted to do yesterday was come home and lie on the sofa but unfortunately I had too much work on.

I was so pleased to know that this year I would be able to attend the to Mick Knighton Memorial Service in Newcastle, only to find that I have my dates mixed up.  I just don't know what my brain cell is doing at the moment! 

Having being offered to be met at the train station from another long time Meso sufferer I was looking forward to a catch up, also with a few other people I haven't seen for a while or those I am in contact with via email.   I noticed this morning I have the day wrong, I thought it was tomorrow and I am sure my friend does too! 

All our staff at work are being hit by a bug at the moment, I swear it's due to human waste being spread on the fields around us.  Some days we can come out of the office and you feel like you are eating the stuff in the air.  So between that and work commitments I can't escape. 

Only a week plus days till I feel the sun again on my body, I had better start getting myself organised as my ironing is still there to do from the last one in May!  Terrible aren't I.

Its raining up here, I hope that the rest of the country see's some blue sky's I doubt we will.

Mesothelioma go away!

I have found that sitting over my desk all day is doing my meso no good.  My left side aches dreadfully and then on Thursday my right side had an old familar feeling, it felt like my rib was stuck to my right lung. 

I have been lapse with blog reading and emails because I decided to write a book, believe it or not it is nothing to do with meso.  Problem is I get so single minded and I had to write every spare moment I had, it felt like nothing else mattered I'm sure if hubby wasn't cooking I would be a skelton still stuck in the chair with my fingers on the keyboard.

Work seems to be same old same old, the house market is still stagnent, the tax man is expecting his P11D's and I forgot all about them.  I have mountains of work stacking up but I just can't get back into it.  My feelings regarding my job haven't come back and quite honestly I don't know why I am still working. 

Our Transport Manager's wife is coming to the end of her chemo yet again, and I pray this time it has worked.  For the last 18 months she has been through one treatment after the other and to be honest I just don't know how she has kept her stamina.  They had planned so much to do when he retires in August but I think their plans went out of the window.  She is so weak at the moment and our weather just isn't helping anyone feel good. 

Hubby took the dogs early one morning last week over the field so he could go out with his camera.  I was just leaving the house when he rang and said one of the Deer was alseep in the field, how he and the dogs hadn't stumbled on top of it was a miracle.  Would I bring his camera on the way to work, so I met him over the fields but spent a good 5 minutes trying to see the Deer.  Finally it raised its head and this is my photo of it peering back at me.  It probably thought what is that stupid woman doing with that thing in her hand.  The grass is so long at the moment that today when we went over the fields I managed to play hide and seek with Bear!  You're right I couldn't find him.

I hope everyone receiving treatment this week doesn't have a rough time on the chemo, Denise is doing well with no side effects and for once isn't that nice to hear.  I also know Debbie hasn't done bad this time round either.  Maybe there is hope that it may not be as bad if I decide to give it a shot myself sometime in the future.

A friend of mine is trying to get me to join facebook, am I one of the only ones still not signed up?  I have no idea how to go about it and have managed this long to avoid it.  I joined twitter but can't remember my password or what email address I used when I set that up, needless to say I haven't used it since!  God help me with facebook and all the security you need to do.  I'll let you know if I manage to actually get signed up.

Wishing you a good week and willing the sun to shine on us.