Quality of Life

A lot happens to us as we travel through this journey.  In my case I have had more pains and related problems, ie this stomach problem of bile together with the new ascities that came at me from a blind corner.

 

They tell us that they will do everything to ensure we have a decent quality of life.  Is that just to handle the mesothelioma or everything else?  Because please this bile problem has been bugging me for years!  It was part of the reason I don't particularly fancy chemo again because I know it will make the situation totally unbearable.  I think my Australian fighter and friend, Lou, is having the same kind of trouble.

 

I know you are sick of hearing me wittering about it, but I can't help it.  I have seen three GI guys, the last actually telling me what the problem is, but no one will fix it.  If the guy back in, I think 2010 had done something, when my meso was under control, instead of saying it was either a ulcer or cancer, I would be in a better place right now.  The noxious stuff burns other organs in time, my poor insides have had enough from the meso without this, and boy has it come back with a passion.

 

It also brings me to another point.  No one but the sufferer or the carer actually does see what is going on inside a home.  We, as sufferers, try to put the good olde brave face on when company arrives.  Seriously who wants to come and visit someone who is moaning about pain etc.  I am always saying to my friends Yes I will get out and do this and do that, I know that on most things it can't happen.  I can't plan whether a week next Thursday I would feel up to a shopping trip, but I say it anyway to be normal.  The carer on the other hand, hubby in my case, is quietly telling them not to make arrangements because no doubt I will fall short and let them down.  My friends probably think it is him being over protective, but it isn't.  He sees far more than anyone else, he understands that I want to be normal and do these things but he also knows that I know I can't.

 

I had a sad phone conversation with a friend who has mesothelioma.  She is in her early seventies, a fit lady as well, who was considering surgery to remove the meso from her left lung.  Unfortunately, now she has made her mind up to go through with it, the meso has surfaced in her right lung.  Surgery has been withdrawn from the options she had.  Alimta didn't work and I believe she is trying a different treatment.  I hope all goes well, she was very bright in her outlook considering the blow she had just received.

 

Another friend who has had surgery is struggling in two different ways.  One, breathlessness, her breathing is getting shallower each time I talk with her.  I have asked her several times what her specialist says and she tells me he says all is well.  I don't believe it, also she has lost a lot of weight, in fact she would be classed as starved from her body weight.  I do worry about her but I can't tell her what to do.

 

Tomorrow is my late Mam's birthday and also the anniversary of the day I was told I had terminal cancer.  Maybe some reflection there then in the morning.

 

The weather seems slightly warmer outside today, Bear has managed to get wet eczema on the back of his head, we have had to cut a whole circle out, he actually looks like a monk!  Typical though, as we will be away soon.  On top of that it seems Lexi may be coming into season.  Boy is our Lauri going to have fun dog sitting this time round.

 

To those on the outside who aren't carer's for sufferers, but friends of either party, take a few moments to wonder how you would cope if it was your loved one in this situation.  Once over I would have thought going out everywhere and doing everything I ever wanted would be the way to go, but meso isn't like a normal cancer.  It has so many restrictions going on inside, and on the outside, well we just look so healthy.

 

To the meso community, happy Bank Holiday Sunday, I hope those in pain are finding relief somehow, those on treatment are coping with the rotten side effects and those in remission, well enjoy it to the full. 

 

Me, well I'm off to pack, I fear this may be my last holiday and that frightens me, its a long time to next April when the weather would make the med a place to visit again.   

Dogs Day

I managed to sit in the garden most of the day, although the sky was more cloudy than blue but I didn't get to walk the dogs.  It was too clammy for Bear to be racing around chasing pheasants or sniffing out whatever has been around.

 

As hubby cut the grass and weeded the veg patch I sat and read another Scott Mariani book, how Bob Hope manages to tackle every armed man and come out of it unscathed is beyond me.

 

Chris called up for a coffee and a chat just as the rain started, although it only spitted a little.

 

My stomach hasn't gone down any further nor have I spent time at the toilet, slightly worried that the water tablets are doing nothing.  I am back to not being hungry, hubby made a salad for tea but I only managed a little ham, a piece of lettuce, some apple, two grapes and part of an avocado.  Not enough for a growing woman like me, Ha!  In fact Bear, who sits by the table and watches every mouthful I eat with envy, decided he wanted to try what was left.  Salad and dogs usually don't go but he enjoyed the avocado and a grape.  Usually if he doesn't like something the moment he puts it in his mouth he drops it out, so I was surprised he ate them and wanted more.

 

Lexi got a little excited outside and wanted to play, three runs for her Frisbee and she's done, but Bear joined in too.  He wanted to play football - they are really like kids aren't they. 

 

I rang to see how Chris Shippen is doing, I am pleased to say she is home but she isn't eating and has no energy for anything.  Her grandchild is to be delivered on Tuesday and I pray that Chris will be up and feeling better to be with her daughter and hold her hand. 

 

To everyone with Mesothelioma and for those who take good care of us I hope you enjoy the rest of the weekend.  If you live up north there is always Sunderland Air Show to visit. Me, well I'll be in the garden again tomorrow if the weather is ok.

A New Day

After the terrible start to yesterday I finally got out and sat in the warmth but under the clouds!  My GP arrived at 1 to check on me and my tummy.  I would be lost without him as he does more than most doctors I know.

It took a while to get comfortable and I was pleased that Bear finally stopped wanting to be by my side and disappeared into the brick shed in the garden.  He loves it there as the floor is concrete and the building doesn't get any sun. 

 

I have heard from Mary in the USA, she has contacted Prof Fennel and he has a couple of options for me to think about, so once the stomach is down I hope to revisit him and maybe get something that will push me forward and keep me alive for a good few years to come.

 

A lot of people have left words of support and comfort over the last couple of days, it does make a difference when you know someone else is going through the same but can take the time to wish you well or pass any information they may have.  Most of my fellow bloggers are doing well at the moment and I hope they all continue to do so.  Good news lifts us all and reminds us that we can keep going.  Lou has an important meeting on Monday and I pray they offer her something useful too.

 

My darkest thoughts came to the forefront of my mind yesterday.  I was frightened and thought if this is what life had to offer I didn't want to be apart of it.  Today I am back on the ladder climbing up.

 

I can't believe my stomach looks like this though, Bear was pushing through my legs when hubby took the picture.

I feel for all those mothers to be in this heat carrying such a weight.

 

I have lost 4 lbs in total, but the stomach hasn't shrunk any since leaving hospital.  I do need it to go further down so I can at least fit in to my trousers.  I know you can buy bigger sizes but then they will hang on my bum and legs.

 

I didn't sweat last night but I did go to the bathroom a couple of times during the night.  Come on fluid get sucked out of the body and back into the blood stream so I can pass you out through my bladder!

 

I have heard that many people have problems with stomachs like this and have to have them drained regularly.  I would hate to think I had to go through that pain every other week.  Although my GP was shocked they didn't insert the drain under Ultra Scan guidance instead of just marking the spot.

 

Mavis is currently on a chemotherapy called Gemcitabine, this has been used as standard in Australia for approx. 18 years with good results so I can't understand why we can't use it here as a back up for those who have had Almita twice.  Although my problem is the platins they use as agents.  I wonder why they couldn't mix Almita and Gemcitabine together?

 

To be honest, I just want the stomach to go, I can cope with the meso growing at a slow rate but I can't cope with this.  It is putting so much pressure on my ribs, chest and back.  I have lifted the MST to 160 morning and night, maybe why I woke up without as much pain.

 

On that note I am off in the shower, there is a slight breeze picking up outside and I really would like to go with the dogs. 

 

Hope everyone else is having a good start to the day, I feel for those on chemo at the moment and those who are in hospices.  We forget what our partners go through sometimes maybe one day we should have a carers day, like a mother's day, to say thank you for being there.

Changes

We all go through changes when dealing with Mesothelioma.  Firstly, the diagnosis and the hope that we can outlive the prediction they give us, secondly, taking on board the treatment and dealing with it, our families watching helplessly as we struggle through side effects, recovery from surgery etc.  Then lastly, we die.  Our families have to pick their lives up and continue on forward.  The pain and sorrow we don't know as we have gone.

 

Many who lost partners\fathers\children have ran the campaigns to get awareness out there and I have always taken my hat off to them.  This must be the hardest thing they do, they have lost the one they love yet are ready to battle for those who are fighting a cancer that doesn't back down.  Each and every day they are still reminded of what has taken their loved ones away from the family home.

 

Within face book the community takes a blow every week, someone who is known dies, the morale of those fighting and those caring have a knock back but what about those who have been doing group support for years, it has to take its toll.  These losses lay heavy with them too.  They may have never met the person who has died but they may have left a note of support, encouragement or answered a query.

 

Jan Weston is withdrawing from this world of face book.  Jan Weston along with Debbie helped the community spread, many others drop out from the community because of the reminder of what they had and what they lost and still asbestos is being used world wide.  We may be getting mines closed but still the stuff is imported and used.  What is an epidemic in the Western World will become one in Asia, India, China and many more countries.  The mean age of meso is 69, it is coming down but when will they take more notice.  Janelle was only 37 when she died last week.  I thought I was too young but this brave young mother was robbed of such a precious life and leaves behind a young family.  I can't believe the age is still so high, I know more people under 60 with meso than over, would the government or any agency fiddle the figures.  If the cancer struck more under 40 would they then release more resources into finding a cure?

 

At times it feels there is no way forward to battle this cancer.  Immune therapy is being branded the next big thing, but to those who don't know a clinic in the Bahamas has been doing this for years and with good results.  My problem of trying this is flying and then fear that I may do something that goes wrong, yet it could be the answer to my and many others who are facing the Evidence Free Zone of our treatments.

 

I must admit today my back has improved, I think the initial day of treatment and one after are the worst.  I haven't done much today, I have been awfully tired, not sure whether its the added meds for my back or the champex tablets for the smoking.  Yes I am trying again, I already think I will fail but only on day 4 of the tablets.  Its the problem of my hands, I have found my knitting needles and no doubt will become one of these square knitters.  This is where I miss my mam, I would knit sweaters and she would help on the bits I could never get right.  Many nights mam and I sat on the sofa, both of us clicking away with our needles!

 

Bear yesterday chased a fox, but I missed it!  The weather isn't in our favour at the moment, the wind has been really strong, especially in exposed places.  The sky is heavy with rain, so at least the veg patch will be watered plenty!  Lets hope the sun returns and we all get some heat into our poor bones. 

 

My meso is playing up a little bit at the moment, my vision is doing what it does when meso has a little poke out.  I am back squinting at the computer screen and my finger nails are peeling again.  I hope it doesn't last long and my eyes return to normal.  Strange how our bodies react to growth, although I guess the little army that protects our organs has to lose some soldiers to go fight the growth.  Just a shame they lose every time.

 

Another strange thing happened to me, one of the Healers from church emailed me with the name of a book called The Healing Code.  Apparently you do a routine of prays to God and you are healed.  I am always on don't believe alert for books that promise miracles but this healer is in her late 70's and fitter than most 50 year olds I know, she also doesn't usually fall for this kind of thing.  Maybe I will buy it and read what it says.  After all what is 15 minutes a day?

 

On that note I will finish the blog for today.  I hope that if you are reading this you are still in remission and the threat of meso is in the back of your minds and that of your carers.  Lets make Summer 2013 the best we have ever had.

 

Saturday Again

Well the sun was shining at 6 am but by 10 the clouds have come across and rain looks heavy on the horizon.

 

My GP and lung nurse both phoned with the MRI results, thankfully, and I mean thankfully, the meso isn't affecting my back.  I have a protruding disc between EL4 & 5 which has trapped my nerve root.  I have no idea whether they can manipulate this back in but I hope so.  I don't particularly want to spend the rest of my days in agony with this as well as the blasted meso.

 

Can't help but write that I am feeling rock bottom, with the loss of both Debbie and Helen this brings it home to us that we won't last till our old age but will be taken long before we are due.  It isn't fair that I won't get to claim my pension or become one of those old relatives you want to lock up in a cupboard. 

 

Our beautiful Meso Warrior Lou is also facing up to trying new treatments, a risky one too, having had everything on offer her meso just doesn't know when to quit either and on Monday is going to see about a new radical treatment.  I hope the information is good but more so the risks aren't too big endangering her life.

 

I would like to have attended both funerals of my friends but getting to Plymouth is out of the question at the moment, a long trip when sitting for an hour is all I can do, but I had hoped to hop onto a train to Runcorn for Helen's, under instructions from Barry I am to stay at home and get better for my holiday.  I guess Helen would have said the same.

 

Time I moved my body and went with hubby and mutts across the woods, hopefully moving my body will get my leg working properly and I may improve in mood!

 

I hope you have a good weekend, wherever you are.

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.

Can't decide what to do

Ok we had snow yesterday, quite a heavy down fall, today we had more, but not as much so I took the opportunity and went with hubby and dogs off to the fields.  We just got part way down when the snow and wind picked up but I wasn't going back, oh no I was out for a walk and walk I was having.

 

Bear thought he could knock me over while we were having our photo taken, believe it or not but it was snowing when this was taken but I guess the woods were sheltering us.

 

Since returning we have finished the Sunday Times Crossword, a feat in itself, and now hubby is up the shed making an Owl Box and I just don't know what to do with myself.  I pulled up the video program but I just can't get into doing any editing of our honeymoon, yes still stuck on those tapes, my computer monitor driver keeps crashing while doing it, so I am getting a tad annoyed with it all.

 

Blogger has developed some sort of problem, God knows what and keeps freezing, I think I have either over worked my black box or the whole cyber space thing is having a bad time!

 

The ironing is waiting for me, I have work for work to do which is spread across part of my desk here at home, my book to sort, although waiting for the cover I could be getting the bookmarks for chapters sorted but I just don't understand the directions on publishing it!  I could do a slide show of the photo's I have taken off the video, I could even go and help hubby cut his wood and screw sides together but I'm just not in the mood.

 

I have another guest blogger writing an article for the blog, she is a long term survivor of breast cancer and has a quirky way of writing and of course doing fact finding on staying ahead of cancer.  Although breast isn't anything like ours I hope you find her story interesting.

 

Debbie is still in hospital with her infection, Tess is getting ready to battle with chemo once again, Steve has finished and still on the body is fighting to feel Normal again, Mavis and I are still inactive stable, well I hope we are!  So why am I in this mood, my meds went in on time (sometimes taking them late can affect my mood) maybe my body is calling for one of those days on the sofa, but to be fair every night from 8pm I am usually sat on the sofa watching whatever is on TV.  The nights are quite boring because I seem to finish on the computer then its just sitting, but maybe today I need that, who knows.

I need some stimulation to get me into gear, maybe a new project but one that doesn't have me sat in front of the computer.  I was asked by someone who has read my book when I'm giving her the next one, heavens am I ready to start with the next one?  Actually I have started it but I can't get back into it!  I have set a wager with a fellow blogger that we will write together as we both want to write books - I need to get into gear to keep up my end of the bargain.  I feel that I have so much going on but then not enough, maybe I am bored I don't know!  Ever feel you start things but never finish them?

As for my meso circle, I have to say all is quiet, that means everyone I know is hopefully doing well and staying stable.  I did hear from Bud the other day, Chrissi has had cryoablation on some of her tumours and I believe is starting some form of chemotherapy.  I hope it works for her as the news it returned so soon after surgery was a big shock.  My thoughts, as always, are with anyone who is fighting this terrible cancer.

On another note, I passed my healing assessment, which means I can practise healing in the SNU churches.  I am so pleased because it was a goal that I had set after surgery. 

Well on that note I guess I should close, I hope you did something enjoyable today and something that you really wanted to do.  Me, I can hear that sofa calling my name.

Simple life

I truly live a simple life, the only things I truly plan now are holidays and have even put the boundaries out on those from 6 weeks in advance to 5 months.  I remember last February for some reason I thought Christmas 12 would be my last and as the year progressed I was sure it would be, what with the chemo having a reaction which meant I wasn't allowed any more.  Yet my miracle happened and that first infusion did more damage than those previously endured years earlier.

 

So my simply life is work, dogs, husband and holidays, although I shouldn't class work as simple over the years it has stressed me out.  The houses under development and the changes I made to the internals to make them more attractive to the buyer.  The market crashing and sales standing still, the cold winters I spent up on site.  In fact this is the first winter for a few that I wasn't having to go to site and ensure all was going as I expected.  But I always find projects to do, if not the houses then large changes to our databases that take weeks of planning and writing, I have found I need these things to keep my mind active and away from Mesothelioma.

 

I opened up a program for the housing that I haven't used for several months and I just couldn't remember how to use the thing.  The other day I had to go into the back ground programming of one database but could I for the life of me understand what I had written or indeed how to repair the error message someone was receiving.  So keeping my brain working is good on the one hand but my brain isn't working as well as it did, say even a year ago.

 

I have had a couple of people doing guest articles for me, I have found them interesting how they arrived at working for Websites that are there to help us with this terrible disease.  I have become friends with those who have published and I have at least one more to do.  Nancy is a writer for another website on Mesothelioma, she actually writes the blogs and checks out the latest trial information then turns it into something we can understand.  We were emailing the other day and it struck me how even though she has a 'normal' life, it isn't that much different to mine.  I keep saying the only thing wrong with me is Mesothelioma, (and Bile) but I don't ail with everyday problems most people have.  How often do we catch colds - Stomach bugs etc?  I think our immune system is fighting really well, it keeps us pretty much safe from many of the bugs that float around.

 

I have taken the opportunity of working at home most of this month and quite a lot of last, for the first time in years I am half way through my Audit for year end, I am hoping that we will have good weather this year and I will take more time out of work completely and spend it with hubby and the dogs in the garden or walking some beaches somewhere.  I also must start using my fantastic Nikon D3 camera more and do what I wanted to do, catch wild life at their best or worst as the case may be.

 

I would love to go back on a Safari but I know this would be out of the question, the long haul flight for a starter isn't advisable, but if you ever get the chance to do one, do it.  The best 3 days you will ever have sitting watching all types of animals in their natural habitat.  I guess my camera will just have to snap the dogs in the near future.

 

I am sitting here with the sun shining through the glass and although the morning started with its usual dread I feel uplifted.  The sky is a perfect blue, the birds are chirping away and I have the house to myself, for a while anyway.  I hope the sun finds your bones to wash across and give you a lift.

 

Special thoughts to Debbie and Tess, both of whom are having a rough time at the moment.  Debbie is in hospital with a chest infection, her start date for chemo has been put back and Tess will be commencing hers soon.  I hope the sun helps lift their spirit today too.

Memories ...

After a slow start and posting Claire's article (below) I took Mavis' advice and spent some time doing something different.  I am in the middle of starting to look back through our time together and decided to try and copy the old (and I mean old) video tapes onto DVD's.  The Camcorder doesn't link to the computer so I hooked it up to a video recorder which I connected to the TV.  I then connected a DVD recorder\HDD player to the video and set play and record. 

 

We had so much laughter reliving our honeymoon.  The rivers we had swam in that were infested with all sorts, the lovely couple from Holland we met and spent 6 wonderful days in their company.  We had forgotten more than we could remember.  Needless to say the first DVD didn't record so I changed the plugs around and connected the recorder to both the TV and Video.  We sat back and laughed as the second tape played, so many good times unravelling in front of us and the interviews we did to each other about our honeymoon were so funny. 

 

On one tape, (believe it or not I didn't even write on the covers to say which day or where!) our last day we were sat in the bar from 2 pm to 7pm, gosh I was surprised how much I used to drink, there again it was our holidays! 

 

Even after thinking I had mastered what cables went where the second tape didn't record either, well that's not true they have written to the disk, just neither will play on the computer or the dvd player arhhhhh.  Frustration is not a word I wanted to use today.  I had already gone to Tesco this morning to buy to memory sticks for my new camcorder as I thought I would do the same as last time, input the TV onto the camcorder.....but no sony have changed the way the camcorders work.  I didn't buy any of the new modern tapes for my older camcorder, which does work by hooking it to the TV and playing the video.  So I have 8 large tapes that I can't record and I am frustrated.

Although a slow start this morning I have decided to try staying at the higher intake of morphine, lifting it by 30 each time to 170 mg for morning and night, I must admit I do feel better today but then it could just be a session and I am masking it!  I never know which way to play this meso game, and as we all know, we never win.

The dogs didn't get out to the woods today, Lexi has finally stopped giving off the 'make babies' scent and Bear isn't as interested, at least the Elvis hips have stopped.  Now he is overtired.  He wandered up to me and gave me those big eyes, I gave him one of those scratches under his chin and he seemed to appreciate it.   I fear he is feeling a little unloved!

So my day has been good but not productive, the pain has been in the background, which has been a blessing, (all those prayers that have gone out for me have worked) and Sunday dinner is resting nicely inside my tummy.  I hope you all have had an equally enjoyable day.

Just wish I wasn't at work tomorrow, I guess this reliving the tapes will become a Sunday job.

Hard going

Having worked at home for 2 days to stay warm, I was bribed by hubby to at least get some fresh air.  I really didn't want to leave the comfort of my office with the logs spitting and crackling, the warmth reaching my feet and keeping them toasty!

When Bear saw hubby in his outside coat he went crazy, bouncing up and down, he didn't even check to see if his mam was coming too, feeling unloved by my big boy at the moment.  I pulled on my boots and off we all went into the garden.  I stayed out long enough to have a couple of photos taken and throw some snow at the dogs.  Although my body was toast my breathing was hardwork.  The air took the hairs off the back of my throat.  I think outside would be like being in the artic although it is 20 degree's warmer.  The snow in this weather doesn't stick to Bear's coat like the wetter warmer weather snow does, at least that's one bonus.

Hubby went to get the camcorder to video the dogs only to find, yes, this battery was flat too, not having a lot of luck with the batteries lately.  Yesterday he rang from the fields to say he had left the battery for his camera charging and forgot to check! 

Still having problems with loading photo's having to use g+ to load the photos into cyber space, I do hope they fix this problem, as I keep loading photo's and then they disappear!

 

I wish me and technology could get on a little better. 

 

On a different note the girl who is designing the cover for my fiction novel is about to finally start it and the proof reading is finally complete, I have a few errors to correct and then hopefully will get it loaded on to Kindle.  My hope is that I can raise some money for MKMRF and Mesothelioma UK, both charities support and do so much for mesothelioma.  I know that to keep the tissue bank open MKMRF will need a lot more cash over the next few years, so if you like vampires, ghosts and Bear I hope you will order the book.  Nothing like a little self publicity!

Hope you are all safe and warm, in the home you want to be in not stuck in a motel somewhere, and if you missed your flight to warmer climates I hope you get there tomorrow.

Celebrations

It must be great to live among all the activities in a city, watching the Queen on TV floating done the Thames it makes you realise how isolated sometimes living the in countryside is.  When the weather is bad there is always something still to do in town, whereas if you live in no where places you need to travel quite a distance to visit the Theatre, the Cinema, Art Galleries etc.  Even popping out for a nice romantic meal means driving quite a few miles.

I ended up having an a long week again at work, finishing around the 6pm mark on an evening, I am so pleased the weather wasn't hot otherwise I would have been annoyed to have spent the full week stuck inside missing out on the sun therapy my body craves.

It is hard to explain pain and how wearing it is.  I know I have said many times but before I was finally diagnosed and suffered what I didn't realise was pleurisy for all those years I was terrified of getting into my 60's and 70's having to cope with the pain every 3 months.  Hubby has a touch of arthritis in his toe and when it sets off he has a small sample of what I go through every day.  The biggest difference is he can take an anti-inflammatory and his pain goes, I have to take morphine and hope it goes!

I haven't heard much from my meso circle over the last few weeks and can only hope that all are well, I haven't managed to email many myself and apologise for being lapse in communicating.

My next big decision is whether we still do our cruise in September, this will be my big holiday before I start chemo, not that I have agreed any dates with an oncologist or trial Prof.  I haven't the faintest idea of what I am really doing but know that after the cruise I will be ready to put my body back through whatever it takes to be well again.  I quite like the thought of the trials where they only last a number of weeks instead of taking treatment forever and a day like a Phase I.  Although the other side of me is thinking maybe just take the golden standard again but only do 3 cycles of it instead of the normal 5 or 6, but even 3 can take it out of you.  But then there is the other question, will I be able to have the chemo! Then the fear is what if the golden standard doesn't work then what, and those are the avenues of thought I really don't want to go down.

I would really like to do the cruise, my only true worry is that once we get on board the ship I just can't be bothered to do anything, sometimes when you aren't fit you do have days where you have nothing to give and the effort of trying is too much to ask, you hate yourself for feeling this way but can't do anything about it!

My office window at home looks out onto the front garden and recently I noticed a Song Thrush as a regular visitor.  By chance on Friday I noticed that we had 2 of them and they kept darting into the corner of the garden.  I grab my camera and had to take a shot through the glass, not realising at first that they were feeding a young chick.  Unfortunately the chick ate behind the leaf!  We were going to clean this corner of the garden last weekend, so pleased we didn't.  There's also a little sparrow sitting with dinner in its mouth as well.  I do love it when you see nature at its best.  Which reminds me I haven't managed to see the Deer and her calf, today we went to the fields but no sign of either.

I think I shocked hubby because the sky was grey and the breeze here was strong and I said right I'll have a shower (lazy morning in my dressing gown till 10 am) then we'll go for a wander.  Funny how Lexi knew what I meant because as soon as I came back down stairs she was leading me into the utility room to get my boots, hat and gloves (dog ones) and started singing (German Shepherds do this when they are excited).  Bear and her seem to enjoy the walk more when I go with them than when they just go with hubby

Well that's all for tonight, I am due a flat out on the sofa, its already 8.15 and I have no idea where the evening has gone.

Till I write again I do hope that everyone with this miserable cancer is having a good weekend, that those who care and love us have some time off from worrying and mostly that our miserable meso stops dead and stays that way.