Monday, 27 June 2011

Meso Action Day

What a beautiful two days we have had UP North, I actually managed to spend some time in the garden, yesterday just reading info on the new Chief Architect x3 program (wish I understood more about CAD) while hubby did this and that.  I did have a go on pushing the lawn mower but he only let me do 6 runs, I think he thinks I can't cut grass, its only a machine you push up and down for God sake! 

I did have fun getting the blaster out and giving Bear and Lexi a good air clean, although Bear just wanted the thing in his mouth again.  I was amazed at the dandruff in our Lexi's coat.  Both hubby and I burnt though, we had cloud cover on and off must of the afternoon so didn't think about sun lotion .. oh well.

Had a couple of hours out this afternoon, sweeping the paths and giving a bit of a tidy up, I had planned to read another 5 chapters of this guide but felt guilty just sitting.  I hope this weather stays, the lovely warmth on the bones brings the best out in me, but then again I am a cold bod ..  Hubby is suffering with the heat.

Did you realise it is Action Day this weekend, since it was changed from February I don't seem to notice it coming up.  I haven't really heard anything about what is organised this year either.  I did receive a copy of the mesothelioma news today but it didn't have much info in regarding events around the country.

I did mention the ADAMs trial, I would have expected more than 13 on it.  The only thing about trials is the fact you could end up taking nothing and hence wasting precious time having other treatments.  I still don't understand why people who don't want to follow a treatment regime can't be used as the "without".  I know a couple of people who don't want to do anything about treatments yet and these would be great candidates to mark and match against those who are willing to give new drugs a go.

On Saturday I had a pain back in my heart region that resembled the ones I had before surgery, the additional morphine took it away but I am hoping it isn't my friend back in the pericardium.  I don't know whether the meso can grow on a false membrane and must remember to ask John Edwards.  Other than the usual I have felt lifted, probably because of the sun.  Stupid really that a little sunshine and heat can make all the difference to how you feel.

My thoughts are with Alan and Heather at this time, if you do pray can you please ask for them too. 

Back to my next 5 chapters, if anyone works with Chief Architect can you please give me some pointers on layouts and default sets and sets that just keep appearing on the drop down box!!!!!  I am sure that as I have grown older I understand manuals even less.

Hope the sun stays shining for us all and the heat is beneficial to you all.

Saturday, 25 June 2011

Weekend of Meso

I did it again, I overslept .. another morning spent with extra pain, why couldn't I just get up at 8 instead of 9.30, it's amazing how an extra 90 minutes can inflict more pain on those sensitive areas.

No word of my scan, although my GP has chased this up and the request is sitting in the hospital department waiting for a date.  At least I will get an appointment relatively soon, but then that leads to the next stage of what will I do.  Yes I have my plan, get my stomach/gut/gullet sorted and see what is causing so much aggro then if the chemo won't cause any more problems to it then I guess that's what I will do.  I still keep referring back to the Adam's trial, which I would like to do but under the criteria I don't think I would be allowed.

My vanity is also coming into focus at the moment, my hooded eyes could be the source of why my eyes want to close around 3 every day so I am going to enquire about having some of the surplus (loads of it) skin removed.  At least this is easy surgery and the benefit will be both visible and beneficial.  I honestly wish at times I could turn the clock back, but would I do anything different about the treatments .. the only one I would by pass would be the gall bladder.

Have started noting more changes in some of the pains, under my armpit is feeling different and my bottom rib seems to feel like its sticking to my stomach.  The iron bar box is expanding further around my chest and my heart area is heavier.  I feel slightly swollen under my ribs, I hope the bottom part of my lung isn't doing anything naughty and entertaining its mate meso!  I am also going to ask about a different nerve pain, I fear hubby is starting to have concerns over whether or not I could commit murder and him being the main victim.  I hate taking tablets to start with as your body wasn't meant to have additional stuff added to its make up, and lets face it the brain is a very unique and in some ways uncharted ground.  Giving mixed signals vi way of a pill doesn't necessary mean it will give the right signal for what it is intended to do.  I know I'm a whinging b*****d normally so add a tablet that makes you swing from bad to worse isn't a good idea.  These tablet inserts always bring a smile, you may become depressed, could bring on suicide etc ..  Not what you really want to read is it!

We have had the dogs out over the fields today, first time in quite a while for me.  It was great as the grass was higher than both Bear and Lexi, which meant neither of them wanted to wander far from us as we made the pathway through!  Because of Bear's neck as soon as I came in I blasted him to remove any pollen or small insects.  What a joy that is fighting with Bear to stop him putting the nozzle in his mouth.  I am sure the power of the thing would blow his insides out!

I hope that if I need to go on chemo the chemo does its job and maybe I could actually feel healthier.  After buying all those new jeans, none will fit as I have managed to gain weight - so a word of advice buy something that doesn't fit when you go shopping as you will either grow into it or down to it!

Have invested in a more powerful house designer program so had better get back to the who to do manual and start reading.  Only hope before I die I actually get to build some of the house designs I have created.

Another weekend with meso on the brain, variable weather and boredom rolled into one.

Tuesday, 21 June 2011

Plan for Mesothelioma

Waking this morning was painful, I hadn't been up and down all night with Bear and it showed. My body ached and hubby had let me sleep till 8.30, considering I had climbed into bed at 9 the night before, I wasn't surprised that I hurt.  I decided I didn't want to clash and go to work so did what I never do, took the day off.

I had a meeting today with my Macmillan nurse, I haven't seen her for nearly 2 years and it felt good to unload everything I had bottled up.  I think I battered her head in as much as I have battered my own in over the last few months.  Part of me still thinks its the tablets but then maybe they have just opened up some doors in my slow brain and let the flood gates open.

After she left hubby asked what do you want I said I don't know I'm just chasing circles.  He gave me a sheet of paper and told me to write down what I want to do.  The Plan evolved and goes something like this:

Get a doc to put a camera into my gut and see what the hell is going on in their, if its the meso then so be it, but it has been going on for a long time so I think its damage from the chemo or losing the Gall Bladder.  Maybe it just needs something little doing but will give me a lot of relief.  The amount of tablets I have tried and got nowhere is annoying.

Get the doc to organise regular blood tests to keep an eye on my other organs.  I have pain around my left kidney so bloods would show if something was wrong or monitor me for anything that could go wrong.

Keep a 3 monthly schedule for ct scans - keeping an eye on the right lung as well.

Arrange to see the Heart Doctor once every 6 months to keep an eye on this enlarged and twisted heart.  Having alot of pain in that area - probably is the meso - but will keep me happy.

See a pain management specialist again - discuss other options that don't cause personality changes!

You see what's the point of fighting the meso if say my heart decides to stop playing, heart problems run in mam's side of the family.  Stomach needs sorting before I or in case I do go back on the chemo.  The one thing that puts me off the chemo is the problems it caused my internals.  I want to be as fit and healthy as possible before I take anything that will knock me over.

Work - work is the hard one, do I quit or do I stay.  Without work what will I get up for, if I'm not feeling great I will waste the day away and doss around the house.  But working too much is making me tired and leaving me running on empty

Bear, my little baby, is back to normal.  He is now letting me scratch under his chin, he has taken some of the tops off the scabs himself and spent most of today asleep in the downstairs shower.  I keep going in and trying to wake him up but he doesn't stir, even if I tickle his paws - which he hates!  His blaster arrived today so we had fun.  He tried to put the end in his mouth, so it was a fight trying to keep it on his fur only.  He didn't have any dandruff fly off him but did enjoy his hair been blown.  Tried to trim the remaining fur around his chest but I failed miserably with that one.  He is still demanding attention when awake though, right now he is calling out wanting his stomach tickled.

On that note I will sign off.  I feel happier that I have unloaded and a plan will be put into motion, Bear is happy and hubby will get a good nights sleep.  Fingers crossed that Debbie and Cher's treatments went well today and to everyone else who is undergoing treatment.

Monday, 20 June 2011

Bear Asleep

After another early dawn with Bear I was both over the moon and annoyed to find him crashed out at lunchtime in his favourite place (the downstairs shower), snoring his head off making up for all the lost sleep. 

Yesterday we finally had breakthrough and I was able to groom most of his body, the minute I moved to his shoulders he took off leaving me holding the comb.  We also decided to go tablet free yesterday apart from his antibiotics, I am sure that the tramadol didn't do him any good at all apart from putting him in more distress.  Everyone I know who has taken them have all experienced dizziness or feeling strange.  He has also managed to scratch his chin with his paw and made quite a few scabs bleed but at least the majority of the green puss ones have gone.

I must admit with running on empty I have felt a lot better, my mood isn't so hot - rather on the if I had something in my hand I could throw it at you phase but physically I don't feel so achy and tight.  Maybe because I haven't been able to lie down and sleep for longer than 120 minutes my body hasn't frozen into one position.  I am looking forward to collapsing tonight though, I said this last night but ended up getting up and down with Bear.  Hubby will have to be on duty and do the its ok Bear routine and stroke his fevered brow, walk him round the house and run round the garden between 1 and 3am trying to get him back in the house.

Have arranged to see my macmillan nurse tomorrow.  I phoned her last week as I want to have a open honest talk about how I feel and what chances I feel I have.  If I did this with hubby or the girls I would need to take their feelings into consideration, whereas with a stranger who has no involvement one way or the other, it won't matter what I say.

I truly feel like quitting work and tonight I was so close to just walking away from it all.  Maybe I do truly feel this is what I want to do or am I just so tired that I can't think straight.

Oh well better go, Bear is threatening to rub his bloody chin all down the sofa.  Pleased to see him back to his naughty self again.

Hope Debbie and Cher had a smooth day of treatment in Germany, put them on your thoughts for the day list.

Saturday, 18 June 2011

Poor Bear!

What a week, with Lexi finally getting better we thought maybe we might just manage to organise a long weekend and get away from it all.  Our hopes were dashed as on Monday night I thought Bear's chest was a little damp.  I put it down to being under the hose pipe again (his favourite hobby in the occasional sunny weather).  Tuesday night he paced and I realised he had another hot spot, no sleep for me as I was up and down with him all night.  He just couldn't bear being left on his own.

We got him into the Vets on Wednesday am and they shaved the poor mite, what a mess, he had green gunck and blood mixed in with sticky hair and sores.  Of course it was antibiotics and pain killers, but still he wouldn't sleep.  He will not put his head on the floor, and because he drools we are constantly wiping is mouth (nothing new about that over the last 18 months) but now if he sees you with the towel he takes off.
Neither hubby or I have had much sleep and we are on our knees so I honestly don't know how Bear is still awake.  The poor thing hasn't slept since Monday night apart from the occasional 1 to 2 hours.

I think its bad having meso, I know from experience that there is nothing worse than wanting to tear your skin off with itching ....  Guess I am going to have to learn how to use those trimmers after all.

I got a lovely email this morning with a link to youtube about a young boy in Korea who hadn't had a life and entered a talent show.  When he sang my eyes filled with tears and my skin tingled.  Hope and chasing your dream can happen.

Bear is yelping for attention so had better go.  No doubt I will do my normal blog tomorrow, at least with all that has gone on I haven't had much time this week to feel sorry for myself, have been to tired to think!

Sunday, 12 June 2011

Busy Week and Meso blues

I never thought that nothing day was going to come to an end but Monday morning I was up and out to work for a meeting on site.  I decided that I have been looking at the housing project as a hobby instead of part of a proper job - hence the guilt at getting nothing else accomplished between 9 and 5.

Monday morning was a nightmare though, Lexi had bled from her holey bum and it didn't want to stop.  The vets shaved her and decided it was best to try and let it scab over.  Hubby moved the spare bed downstairs and slept with her, otherwise she would have attempted the stairs and stretched the skin apart causing it to reopen.  What a bunch of softies we are in our house, but our Dogs are children to us.  Normally the both of us would have slept downstairs but things have changed since we last needed to. We have now started her on another course of tablets, regardless of cost I hope they do the job.

I couldn't bare looking in her eyes, they looked so pained and sad, thankfully by Wednesday she was bouncing back - she is on tremadol for the pain and I felt guilty giving her those, as from experience I would loose a day or two when I took them.  How do we explain to our pets what is happening to them.  She knows the routine of getting the cream rubbed on, overhead lights go on, she jumps onto the corner part of the sofa, cream applied, biscuit given.  Sometimes when its tender she tries to put her bum further into the corner, but overall she does really well with the nightly treatment.  The new tablets are like rockets so she is having an extra treat, tablets wrapped in black pudding!  We tried milky ways for a couple of nights, but chocolate isn't good for dogs ...

I took half a temazapam on Sunday night to help ease my muscles and have continued every night this week.  They have seemed to help as my side doesn't feel like a stiff mass on a morning.  Just wish I could get my insides to feel the same.  It scares me the thought of chemo again, if my internals open up like boiled tomatoes will I bring on even more long term damage?

Seems like a few of us are feeling the meso blues at the moment.  You find yourself pondering about life, is the pain worth all the effort, are the treatments just forestalling what is to come.  I think we have all been in that mindset at sometime or another during this journey.

I haven't had word on my scan date yet, neither have I heard back from my oncologist to say what his recommendations would be if I need to proceed with treatment.  I was hoping for some feed back on the research I gave him.  I keep thinking about getting back in touch with the McMillan nurse but I'm not sure what she could do for me. 

My busy week of working 5 full days and Saturday morning caught up yesterday and I crashed on the sofa.  I brought home loads of paperwork to do but that went out of the window.  Today the sun shone for all of 30 minutes, I got a little excited at 9 thinking I could read a book in the garden .. oh well.  If  I could just summon up the energy to do something different I am sure hubby would be over the moon.  Instead I sat for 5 hours at the computer reorganising bathroom walls in the next housing project.  The houses are built, not complete.  One style I have already altered to accommodate a dining area, in this other style I am trying to create a bigger bathroom and ensuite.  It is so time consuming and harder than starting from scratch.  At least tomorrow I will know which decision we will go with then I can start thinking about the kitchens to go in. 

Here's to another week, and hopefully no nothing days at the end of it, would be nice to plan something other than catching up with resting on Saturday or Sunday.

Just before I log of War and Peace, I had a new pain this week.  It reminded me of the days when the heart attack sessions use to happen, please someone tell me that the meso can't grow on the false membrane that is wrapped around my heart.

Sweet Monday tomorrow


Sunday, 5 June 2011

Nothing Day

Do you ever wake up and know that today is going to be a nothing day.  I nipped to the loo about 7am stepping over Bear who was snoring his head off and laid so I had to play twister to reach the loo.  He didn't wake and I thought Great don't have to do the stairs and let him out.  I should have stayed up because I know I would have felt better but no I went back to bed.  Hubby climbed out about 8.30 and I was aching badly then but I persisted in having a lie in.  At 9.30 I decided the steel bar in my left side wasn't going to ease and if I straightened my body out the shock waves would certainly be unbearable... so I knew a nothing day was ahead.  Strange on how a nothing day your legs even ache, even my cheek bones ache.

The sunshine of Friday and that wonderful feeling of being alive died with Saturday morning and the grey clouds.  Such plans for the weekend dashed by the colour of the sky and the strength of the breeze.  Do people who don't suffer cancer ever feel this way.  Maybe they do but I can't ever remember having nothing days before.  Gosh what was life before mesothelioma, before pain.

On a nothing day I just can't be bothered, the energy even to converse with another is too much, you don't want others to know your having a nothing day, you keep everyone at arms length - thankfully hubby knows the pattern of my nothing day.  An old movie on the TV, let me laze on the sofa, fill me with tea and coffee and try and tempt me to eat.  I want to eat and chat but I can't, my nothing day is consuming me.

If I have overdone things for a while, maybe two weeks of none stop activity  then a nothing day happens.  You feel it will be the same tomorrow, but you know it won't, just today will be that nothing day and usually tomorrow I'll be fine again.  My worry is that maybe the nothing day will start becoming every day and then what will I do?

I can't even tempt myself to do any computer work, even writing the blog is a struggle, I will hate loosing this day, feeling it a waste of a day in my life, but there's nothing I can do as I am bound to this nothing day.  I want this day to end, to find myself retiring to bed and waking up tomorrow, but the clock is clicking slowly today, I want to do something but can't summon up the energy to do it.  I'm frustrated at the lack of drive I seem to have but I can't bring the frustration to a head to force me to take action.  It's like a merry go round that I just can't get off.  It's like a bad hangover but without the fun of the night before.  So difficult to put into words is my nothing day.  

I'll close this blog on a nothing day and hope its a long time before the next one consumes my day.

Wednesday, 1 June 2011

Do we help - I hope we do

I had a lovely email the other day from a lady who's husband is on this journey.  There are quite of few of us writing blogs about how we cope.  I remember when I started out with meso and you did a search on it you were lucky if 3 pages came up and all but 3 were solicitors (usually American) on about claims.  Now there are hundreds of pages, still alot of solicitors but much more with information on the cancer, how it works and what it can do.  There are also lots of references to stats saying we only have so long to live etc.  Yet there are quite a lot of us out there still holding on, but most importantly there are real stories about real people and I truly believe they help.  If only one piece of information reaches one person where its needed then sharing your thoughts and info is wonderful.

When I was younger and felt a little low, you know fell out with boyfriend, didn't like the boss etc, I use to write it down and get it out of my system then tear it into little pieces.  For me the blog has become something like that.  Maybe I share too much and then other times I don't share at all.  Over the last few weeks I have wanted to hide my head in the sand and wish I was some one else or some place else, we all need an escape to something other than meso and boy do I need one from myself badly. 

I honestly believe that the gaberpentine have a lot to do with how I feel but I also remember the night before cryo in LA and I told my body that this would be the last time I would inflict more damage to it.  How it keeps bouncing back is beyond me.  My mind already had the seed of defeat and I do think these tablets are helping to feed that seed. 

I went to healing today, all morning my side felt like it was burning, especially between two ribs and every so often I kept getting a jolting pain through it.  While I sat through the healing I realised the jolting had stopped and 30 minutes later the burning had ceased.  Was it healing or could it be simply the pain had burnt itself out.  I have to be honest I am dreading the forthcoming scan, after having surgery I honestly thought it would be years before I needed to worry about the meso and all I did during those 24 months was moan about pain, but pain is wearing.  Now there is nothing really out there that can remove the whole lot, you seem to think of surgery as being the final hit to the disease but that dream fell apart and I am left to pick up the pieces.  My family and friends don't seem to understand anything apart from wanting to push you on into some other kind of treatment.  Whether it be right or wrong they want you on a treadmill .. this is where you have to be careful, jumping in too fast can be as bad as jumping in too late. 

I have pushed my body to the limits, thinking that it can get better in days rather than weeks but if we aren't strong we can't fight and by not giving my poor body time to regenerate its energy I am wasting more energy by doing something other than recovering.  All just to be normal.  No more was my cry in LA but I also don't want to lose the battle either.  I wish I could straighten my brain out but I am so exhausted I can't think in a rational way.  Hence I think the tablets aren't helping.  I am so tired but sleeping isn't making me feel refreshed. 

Before I sound like a long playing moaning record I will go, always hoping tomorrow will be better and brighter, just one day of feeling good would be so welcome. 

This is where I hope you are feeling good, pain free and worry free - long may it continue, so if you are that lucky thank your body and make it feel special. 

To Alan and Heather willing every bit of luck going for you both.

An exhausted, overtired and overwrought Jan