Survival Stories and Great Sadness

I received an email from a young man I have had the pleasure of being in touch with for a number of years.  He has been fighting on behalf of his mam since her diagnosis, researching everything and even travelling around the world to get her medication to fight her Mesothelioma.

 

It is with great sadness that his mam has lost the battle, it would have been her 65th birthday shortly.  I am sure that everyone in the meso circle will send thoughts out for Mrs Szymanski and her devoted son and family.

I hope you can watch over your family from afar and always keep them close in your heart

R.I.P

Ben sent this link and it does remind us we are lucky

http://www.asbestos.com/blog/2012/02/07/key-tips-survivor-insight-series-recently-diagnosed/

I wish the magic pill was on the horizon and all our worries would be over.

Eight Wonderful Years Gone - hope Eight more to Go

My friend  has stayed with me since I was a child
I didn't know it then as it slept quietly inside.
Once awake it never sleeps
No matter what I do
Taunting me with false hope
it still stays consuming my life

It isn't only just my friend
it has attached itself to so many others
ruining once charmed and happy homes,
destroying relationships, bringing tears
striking fear into our very souls.

It has created some thing it didn't expect
a unity of many, an army of warriors.
It's once fickle friendship is not mine alone
many it has befriended, I now know

It didn't introduce us how a friend would do
It didn't want to be named
concealed deep within
Once known, its name can never be forgotten
Nor will those it cast it's eye upon and claimed

Our mutual friendships have developed
We all share the need of Hope
Some comrades have fallen
Our Friend claiming them for its own.

Beware my unwanted friend
United we stand until you fall
That day will bring such Joy
Your days of friendship will come to an end
Until then Meso, take the hint
and go to H***.

I didn't know what to right today, it isn't a great day, we are all terminal from the day we are born but we expect to expire from our life with a nice heart attack around 85, our feet up in front of the fire, or passing in a nice deep sleep.  When you are told your day's are numbered and in 04 days were really numbered, the stats gave you less than a year, many less than 3 months.  This wasn't a cancer they expected to find in people under 70, it had been around for a long time but in the civilised world it seemed to strike the elder first, how easy to put it under COPD.  Then the age started to get younger, no longer was it a man starting his job and the meso coming to life 40 years later, it was on overalls that affected his children from the day they were born.

 

When my dad left Bakerlite, where he use to walk through asbestos regularly, he started up a garage.  Brake shoes and the like, we spent our summer holidays playing at the garage, I was six when he left Bakerlite did I get it from his overalls then or from when we were kids in the garage.  Either way asbestos should never have been there.  Nothing that can't be killed should ever be released on the world.  Nature has the right to destroy us and by its choice only not by us taking nature into our own hands.

 

On a light and nice note, I wanted to get a nice pic of Lexi and Bear coming down the ramp from their walk, so I laid on the floor at the bottom of the ramp, camera in focus.  Bear saw me lying on the ground and before hubby had the ramp in position he jumped over the top, thankfully hubby was able to catch him and break what could have been a nasty fall.  I didn't give it a thought that the dog might think I was ill!  My camera, well it went flying along with the ramp and I didn't get a shot of the dogs just drool covering my hair!

 

I hope you have a good Bank Holiday and to all those on treatment, I truly hope the side effects aren't making you too ill.

 

I hope I'm still here to say Its Nine years and then 10.  If they had opened me up in 2002 I often wonder if I would still be here, Alimta wasn't freely available then so probably I was lucky they didn't discover my meso then and I had two blissful but extremely painful years of being ignorant of the fact.

I Missed Out

While I was hard at it, well not quite, I was still waking myself up on those slow mornings that have become normal, hubby left the house and went armed with camera to try and catch the Kingfisher that has been seen in the low bird sanctuary.

He came back not only with some 160 pictures of the bird but a couple of this young fox.

How jealous was I that I hadn't been there to see it. 

Tomorrow could be an emotional day, it would have been mam's 85th birthday and its 8 years since Dr G told me I had terminal cancer.  At least it was a nice summer that year!  Although I missed most of it having surgery on the 5th, being ill and then surgery again on the 31st.  I do remember sitting in the garden in September though.

Bored of myself

Another week has flown past, I can't believe I have done so many hours this week, it will be the same again next week and perhaps the week after.  I am so looking forward to going on holiday in September just so we get some sunshine that doesn't turn to rain.

How can such a small island as this have so many different weather patterns.  South is hot and sunny, North wet and clammy, Scotland wet and cold.  We aren't that big so why such various weather patterns is beyond me

I got up with our Lexi at 5 this morning to let her go out, I climbed back into bed half awake but found I was quite breathless.  At 6 our Bear came up and shoved his snout into my face, so once again I went down and let him out.  Climbed the stairs, back in bed and once again breathless.  Of course I have told myself I am smoking too much and that I need to cut them down but I know they aren't helping but it isn't the smoking its the meso. 

I do hope it is slow growing on this next scan, but whether you have large amounts or thickening that isn't very thick or singular tumours that measure some 2 to 3 cm's its what nerves  they can push on that makes them painful.  For breathlessness I'm not sure, my right lung, as far as I know, only has 3 small tumours, I can only hope they haven't grown or is this the reason for the breathlessness.

Why is it us women need friends, yet men can manage not to bother as much.  I have had two friends for 36 years but recently (well over the last 2 years) I think I finally realised that they aren't the friends I truly thought they were.  This is probably why I can't give up work, it is the only form of socialising I have and one that I would truly miss and maybe the friends I have at work are probably better friends than those I class as my friends.  I have plenty of acquaintances but nothing beats that true friendship you form where you can discuss anything and everything.  I am probably one of the worst for visiting, or have been over the last few years.  My friend Joyce broke her foot and I have only been once to visit!  I keep trying to do stuff but work comes first, then when I get in I'm tired then its another day.  Our lives seem to go

Up - Shower - Work - Lunch - Work - Dinner - Computer - TV 9pm - Bed 10 pm.  This is my Monday to Friday Schedule apart from Wednesday when I go to healing.

Weekends its Up - Shower - either work or walk dogs - Computer - Dinner - Bed!

I need to get a life before this precious life of mine goes.  I remember wanting to work till I was well past retirement age, I don't want to do that now but if I do give up work I can see me doing nothing apart from sitting in front of a computer all day and doing nothing else.  Not healthy for me, and a lifestyle that can lead to boredom and depression.  Hubby and I said when summer comes we'll do this and that because the weather is better.  Summer is here but still we have done nothing different.  The walks have been pleasant because the weather has been warmer and not too windy but apart from that my life has been no different to that of last year or the year before. 

Why do we fight to stay alive, put ourselves through countless treatments that nearly kill us?  I know its love for our partners and family but sometimes does our existence really mean that much.  Sometimes when I am in the realms of pain I ask myself this and even though my life is as above Yes I would fight tooth and nail to still be here.

I often wonder would it have been different if I hadn't been ill for all these years and I honestly can't answer whether it would be or not.  If anything I would probably work more hours and still do nothing about visiting and socialising with friends. 

 On that note I truly hope you are doing something much more exciting than I.

Inside Out BBC Prog

The BBC and the meso world needs you.

If anyone glancing at my blog lives between York and Berwick including Cumbria then you must get involved with a documentary on Meso.

david.morrison@bbc.co.uk is looking for you to take part in an interview to discuss your feelings about asbestos still being available and the laws which are changing regarding pursuing claims with legal aid.

Lets get some voices out there, Chris Knighton will be proud of us Northerns for coming forward and doing our bit.

If he can't get enough people then the story won't go ahead and meso once again looses out on the plublicity needed.

Wedding Anniversary

16 years ago today we had temperatures up North of 26 degrees, the summer really was nice, the gardens were beautiful and the church was over hot.  We had to repeat our wedding vows because we missed our surnames out and the wedding was stopped by the registrar so we had to begin again.  The nerves of the poor minister after that were terrible, he kept dropping his notes and was pouring with sweat. 

That day seems like yesterday, it was so hot, the weather summers were once made of, in fact I think that is the last proper summer I can remember.

Neither of us thought I would still be here today but thankfully I am, if I hadn't been married to hubby would I have put myself through the same tough treatments - I just don't know.  Does it come down to who we are with at the time as to whether we hide our heads or get down to a fight. 

Hubby is off to see the docs today about his stomach, I do hope today they decide to send him for some tests.  I am hoping they say you have to cut down on the Bacardi and cokes, maybe his stomach might shrink!

Well have to shower and get to work.  Hopefully will be writing this time next year and celebrating another anniversary.

Sunshine Lovely Sunshine

Hubby decided to surprise me and have the carpets cleaned to make the house smell sweeter and remove most of Bear's drool.  Lets face it he makes plenty!

The sun came out around lunchtime but of all the days I was working all day.  I managed to work late as well, so I was a little upset that for the first time in weeks and I mean weeks the North East of England was having a proper summers day.

Nevertheless, the dogs knew that I was thinking of a wonderful walk over the fields, as when I came in the dogs were both jumping up and down, Bear dragging my hand pulling me to the utility room to get my walking boots on.  Honest you can't keep anything from the dogs!

Poor Bear didn't manage to catch any pheasants but certainly enjoyed himself, wish I could say that Lexi was getting some hearing back but still shows to be as deaf as a post. 

Healing tomorrow, I can't believe how fast the week has gone by but I must admit I am looking forward to having healing.  Really need some of the heat on a couple of my pains.  At least on Monday my heart seemed to settle back down, through another one of those new style sessions.

My doctors are requesting my scan for end of the month, I know its a scan and I know it might say things have grown.  Maybe and hopefully it will be pretty much the same as the last one but it is hard to size the tumours and thickening.  As usual we never lie in the exact same position nor does the machine start from the same starting point.  What could be measured as 11mm last time could show just a small growth depending where the cut of the shot is or a lot.  We say to ourselves I know it isn't going to be stable and it could only be a small growth but even a small growth sets your mind into a whirl, no matter how strong we are.  Just hope my news isn't as bad as Chris had this week.

My heart and thoughts go out to him and Cath this week.  Even if you don't believe please send a healing thought to him.

Fingers crossed the sun still shines.  Stay safe and well all.

New or old Growth Meso

These last few days have been an annoyance with pain.  I am sure that ever since my overdoing it on my birthday walk my friend, meso, has jump started into a new growing wave.  The structure that holds my heart in place feels like a ton weight that is pulling south with every movement.  A new pain has developed on the left just on the last rib and a couple in the right lung, especially one around the shoulder blade.

Whether this is another quick spurt that will settle once my body gets use to them being there I don't know but I hope so, I really can do without it.  I keep telling myself I will hold back, I guess in my mind, as in the minds of other meso sufferers, I am waiting for that magic pill that will take the meso away and it never come back.

I was reading about other sufferers and seeing that some have managed 4 years meso free after treatments and more so surgery I feel robbed.  All the treatments and surgeries I have endured and my meso always seems to rear its ugly head, one year after the last surgery just isn't fair. 

Funny though because my whole body is feeling the effects, my joints ache, my legs feel heavy and I just can't be bothered.  Will I feel better in less than a months time, I hope so, because we are going on our cruise and hopefully the sunshine will give some peace to the pain that is currently controlling my life and my attitude.

Lifting the morphine for these pains won't work, it isn't acute its more wearing, a slow toothache apart from the heart area and my that hurts but not acute.  I have always been told that meso pain is the worst there is, but just how much worse can it get? 

I was watching the amazing Mr Benjamin last night on tv and I cried, I felt all this emotion that has sat inside for so long rise to the surface.  I missed my mam and felt guilty that I wasn't at her bedside when she died and for the first time that I can remember I started to worry about actually dying, will it be fast, slow, painful?  Terrible thoughts were racing through my head that by the time I went to bed I had put myself into a state, one which I can never discuss with hubby.  I ended up taking a temazapam just to help me relax otherwise my mind was going to be on that ever turning wheel.  I had hoped when I woke up this morning the pain in my heart would have lifted but no its still there.

I do envy those who have no pain, honestly if you are reading this with meso and are pain free you really have no idea, under the circumstances, how lucky you are.  How much pain can the body endure in one lifetime?  Between this and endo I have been in pain since 1988!

Sorry I am feeling sorry for myself big time, I need a good shake.  I know that many of us with Meso go through days, weeks and some even months in this state, but it doesn't make it any easier does it. 

I really want to take the mutts for a walk today but the thought of tramping through the high grass and making my aching heart work harder isn't appealing, but being stuck in the house sitting in front of a computer screen isn't the answer either.

I have joined fb and have learnt so much from postings but regret it because I am finding I can be on there for too long.  I need self control back.

I know I can't face another Nothing Day today but at the moment my body is telling me that's what is going to happen.  I hope no one else is having one today!

Meso - How?

We all wonder why we were struck down with this damn cancer, we hear of people making snowballs with the stuff, my father in law was one, and yet (fingers tightly crossed) they didn't breathe in that one atom that would change their old age (well you know what I mean) elder years then forever.

Today I am planning on working all day but I can't get this feeling of I can't be bothered out of my system!  I don't know what is happening to the work alcoholic person I was, is it the morphine, is the the cancer or is it getting on in years!  I truly hope its the latter and what I am feeling is pretty normal when you get older. 

Speaking of morphine I was taking my tablets the other morning when a friend was here and she told me I don't take enough fluid with them, just a sip and down they go.  She mentioned this could be what is causing my terrible stomach on a morning.  Maybe, so I have tried drinking more water with them on a night, ok its 3 sips but maybe its too late and the damage is done if it has been the meds eroding my insides.  I will monitor my progress with the volume taken.

I also stepped onto the scales last night and saw I have dropped 2 lbs, not a lot in the scheme of things but I really can't afford to lose weight.  I am now 9.7, probably about right but if the weight starts to drop and I end up like that twig stick I was last year I will be upset. 

On a brighter note hubby took a much better photo of the Deer on Sunday, it does annoy me that she stood still for so long, if we had been poachers she would be dead.  Why do people have to come and kill such beautiful graceful animals and nearly always for the fun of it.

Had better make a move, shower and work are both calling

8 years today

Its hard to forget the day that your life takes a new direction.  Today 8 years ago I went into surgery, I remember having to repack my little bag because I would wake up in a different ward, I hadn't asked anything important like "what will happen afterwards".  I was just looking forward to the surgeon finding the reason why my body was putting me through so much pain from a 3 monthly basis for 3 years to a daily one.  The whole of 2004 I had spent in pain, granted I was still going to work but seemed to spend at least one day a month at James Cook having fluid withdrawn or X Rays taken or having to come home from work because the pain was too bad.  Painkillers I think I had were tramadol but I refused to take them because they made me feel lousy.  How did I do it back then?

The trolley arrived for me at 8 am I was first down, expecting only to be quick surgery I ended up having 4 hours on the table.  I didn't wake up till much later with a pipe in my bag and drains in my side.  All I remember from that first waking was throwing hot chocolate over myself and knocking the drain out of my back which resulted in blood spurting out and covering the bed.  The threat of returning to surgery hanging over my head.  Gary was sat by my side and kept calling my name.  My BP had plummeted, not getting above 70/50 for the first few hours and they didn't want me falling asleep.  

It took 3 weeks before they broke the news to me, by then I had spent time back in hospital because I was filling with fluid.

Yet here I am still here and thankful, as today off we went over the fields again, Bear and Lexi both kept leaving us to wander between the long grass.  As Lexi has gone suddenly deaf we need to be eagle eyed in case she spys something that she might want to chase and ended up tripping and falling in a hole.  We were leaving the woods when I spied a Deer, she was stood perfectly still watching us and the dogs. 

We stood for a good five minutes, Gary and I watching her and her watching us, the dogs sitting in front of us looking forward, when the wind changed direction we thought we had better move, Bear's head lifted and he started sniffing turning to her direction. The Wrens were extremely noisy today as well, I even managed to grab a picture of one, which isn't brilliant because Wren's don't stay in one position long enough for the camera to click.  I don't know about where you are but the flies up here are terrible.  I can't remember so many attacking us in the fields as they are at the moment.

Who's watching who?

I created a page on Facebook called Jan's Meso, it is similar to my journey of treatment, hopefully if someone falls on it they will realise that we can survive longer than the year we all seem to be told we only have.  Maybe some of these oncologists should start reading blogs like Amanda's, Debbie's, Mavis' and Linda's.  Speaking of facebook I have lost hours on it, it is like an addiction.

I noticed yesterday and today after walking I have a new pain, it eases after a few hours but it is in my back, just at the bottom of my lung.  To press the area is tender.  I am still holding to waiting till the end of this month for a CT but if I want to go the the Carers Day in October I don't want to be starting any treatment until after that.  One good thing today though I didn't need to use the inhaler I think it had something to do with the warmth.

What a thunderstorm last night we had, then today we had a blue sky till 2 then the clouds rolled in, thunder in the background but so far only one shower. 

The only good thing I can remember about the summer of 2004 was that it was extremely hot, when I was allowed to walk after surgery I went outside and the sunshine was glorious.  It stayed with us till September, shame my summer had been spoilt by illness and bad news, but if anyone asks I remember that as our last hottest summer!

Keep strong everyone, I know it takes a lot of effort but just to feel the sun on your cheek or a breeze ruffle your hair it makes life that little bit more special.

For John and Rossana

I have just heard that my friend has lost her partner to Mesothelioma early this morning.  There is not a lot we can say at times like this, even though I have never met either of them I find I embrace people into my heart that I meet through this wonderful world of cyber friendship.

John hadn't been diagnosed that long, unfortunately by the time he was it was too late for treatment because he was so weak. 

All I can ask at the moment is that we all send a thought of love to Rossana to help her through her grief.

To those of you on facebook, if I have shown something that shouldn't be or haven't got the privacy issues sorted out correctly please let me know. For someone who was once a techno babe I have certainly gone down hill fast!

Out in the fields

The sun may not be shining and yes I'm still wearing a heavy jacket, my excuse is so that the Deer can see me, in the height of this grass both dogs need to see me easily.  Lexi is currently stone deaf so hoping her trip to the vets about her ear will result in them syringing hers clean.  Do they do that to dogs?