Thursday, 30 May 2013

Another Day of Back Manipulation

What a week we are having from hot weather to brutally cold days then muggy nights.
Today was my visit by to the physiotherapist, I asked him to be gentle with me as it seems this nerve problem is doing all kinds of weird and unwonderful things.  Who could believe that even passing water could become so painful, no stinging but a dull pain in the muscles.
He reiterated that the damage will take months to correct and that the brain is trying to deal with the different signals, hence the pain travels to different places.  Please I begged, I just want to be normal!  To think this all started with some strange spasm in my left leg when I lifted it a certain height or went to sit or cross or my legs.
Ever since surgery I have stayed away from massages on my back, allowing only along my shoulders even though I would love a great back rub.  Now I wonder if I had allowed a back massage would I be having all this trouble now?  Although by the time he has pressed on my poor left side, where all my thickening resides I wonder if I am doing more damage than good.
We take so much for granted, I just seem to go from one pain event to another, maybe if I turn my thoughts around and say give me more pain it might just disappear!  Now that would be nice.
Many meso warriors around the world are facing rounds of chemotherapy or trials for new drugs, it is frightening now to think how many people actually have this terrible cancer and yet we are no further forward than we were 8 years ago with a different chemotherapy treatment.  If asbestos is a natural fibre then somewhere near its mining area most be something that can destroy it.  I wish there was a dog leaf we could eat that killed the tumours that develop in our bodies.
I am also still upset at the fact I am still waiting for my results, by the time I get them it will be 2 months to the next scan, (if that is actually done on time) not much time for celebrating all is ok, then today I received another letter with a different appointment date for my oncologist.  I'm not sure whether the one in early June has been cancelled and the one end of June is now replacing it which will make it nearly 9 weeks after the scan.  Another job tomorrow to ring and see what is going on.
Lexi came through her surgery, thankfully.  Although we were worried as when we rang at 1 pm she was still under her blanket and not moving much.  They found two tumours and removed both together with a small lump removed from her rear right ankle and one from the top of her left rear paw.  Then they looked at her pile and removed that, only to end up having to stitch inside her anus as the pile was much deeper than anticipated.  The poor dog is not a happy girl, she looks at hubby adoringly and gives me daggers.  Maybe because I'm the one that gives her the nasty tasting meds!
That's it from here, hope we all live to fight another year, we are driven by the will to live and long may that continue.

Sunday, 26 May 2013

Heat and Blue Skies

Yesterday morning we woke to sunshine flooding the bedroom, although outside was still a little cool, but Yes I thought, Sunshine.
I had overslept so my body ached badly, especially my back and leg, together with my normal torso feeling of the body being compacted.  But a couple of coffee's later and of course checking what is happening in the world I was ready to face the day.
Hubby was sat outside, he came in with the papers but a look on his face that told me something was wrong, Lexi has another growth.  We both had a quick shower then straight to the vets, yes it will probably be cancerous, the last one was.  The only worry is it could have spread to her lungs, she is panting a lot but then she is nearly 12 but nevertheless the lump will be removed.  We had also found a small nodule on the back of her foot, we didn't think this serious but our vet told us these were things that caused dogs to lose a leg.  He will take a biopsy of this one too.  One bit of good news the pile that is giving her grief may be able to be removed, so at least she will get some benefit from the operation.
We came home and took them both over the woods, the sun was warmish, not too hot for Lexi.  Both her and I are like little old women, in the case of Lexi I guess she is.  We both took the walk slowly around the field and through the woods.  The grass is really growing now but was quite wet, the ponds still flooded so heavy boots required to keep my toes dry. 

We headed home for lunch then an afternoon in the garden, hubby cutting he lawn, me proof reading The Vial.  This is the time I wish I had an editor or agent, as I have two other books I have started, one another in the series of Bear Boy and another about my own journey through life and meso.  Not sure whether I would publish the latter though.

As we sat in the heat of the afternoon sun we had an ice pop each, Bear sat in front of me the entire time so I had to share.
I love Ice Lollies!
But cold on his stomach isn't a good mixture, so after eating half my ice pop he consequently threw up, thankfully not over me.

Hubby brought out some crisps, again he begged, drooling like it was going out of fashion for a Newfoundland.  My clean clothes are in the wash!
More Please!
If he could have put his nose in the bag he would have done.

Well it looks like nice weather again today.  Why is it though when its hot I feel like I should be doing house work or sorting drawers out, I think when I was living at home sunny days always made for more housework or a good clean out.
I was supposed to be in the Sunday Sun today regarding the release of The DreamWeaver's Choice and why the Tissue bank is so important and of course MKMRF.  I have done two interviews for this paper previously.  As the paper man hasn't been as yet I don't know whether it has been included.
Well that's all from the Sunny North East of England, no doubt we will be a couple of degrees cooler than those down South but at least for once we have some sun!

Wednesday, 22 May 2013

Poor hubby

Having a rotten time with my leg\back\heal\shoulders and head I feel so bad for hubby, he started with a raging sore throat over the weekend finally going to the doctors on Tuesday to get a strong dose of antibiotics.
He looks so sad, unable to swallow and drink, but why is it men seem to look more sad and unable to do things than us women.  I hate the fact he has had to run after me while I couldn't walk but I don't think my demure (for want of a better word) was as sad or is as sad as his.
Men are certainly wired differently to us, hence why men deal with mesothelioma so differently than the growing number of women who have it.
I have managed to go to work this week, although yesterday I could have stayed home.  I went to the physio on Monday and I swear what the one on Thursday put right she has put wrong again, I just want this whole problem to go away but it does seem two steps forward and one step back. 
One good thing about hubby being ill he won't move from in front of the TV so he waited patiently for the article on Mesothelioma being discussed in the House of Commons, after some two hours it was brought up for less than 3 seconds, only to be passed to the House of Lords.  Well I am pleased he watched it and not I!
It seems the government are looking to put compensation in place for those who haven't an company they can seek compensation from.  I was hoping the debate was going to be on spending more money for much needed research.
I have heard from a gentleman in Germany who is looking at the following treatment for a family member,  although another USA product it seems like the trials will go international.

I am not sure whether this is something that is being developed in Wales under a different pharmaceutical company.
Guess that's all from me today, another day in the office but my do I wish I could put my feet up.  At least I can walk again.


Saturday, 18 May 2013

Is it winter already?

Last night I did something I haven't done for a long time, drank and drank again.  It started with making my Maltese style lasagne, it had red wine in, so with dinner I asked hubby did he want something to drink he said Bacardi and Coke so I thought why not, I'll join him.  That was at 7 pm, we went to bed at 1.15, I haven't been that late up for so many years I can't even remember.  I've been worried about hubby recently, feeling that something was going on with him and he isn't talking about it.  Last night we talked, boy did we talk.
I said some time back he didn't want me to have the latest scan and to wait to have my scans till after the summer months but I didn't want to.  He feels that if I know there is growth it will spoil my holidays whereas I told him I need a time marker, if it is growing we can monitor it's rate of growth much easier than just waiting till September and finding out it has grown and to what extent.  Not that I believe the mesothelioma is going to grow. 
Having had mixed meso in 04 I have been extremely lucky and to be honest if the meso does return I would rather monitor it again like I did last year and hold back on treatment till after Summer, but we need to know the rate of growth, so scans are important. 
It's back to the what if's again, if the meso was to grow do and if we leave the meso to grow for too long will chemo be as affective or if we dive straight in for treatment are we using up all our options.  This cancer hasn't any choices in the chemo regime and our bodies become used to the poison, results each time being less than the first time the chemical was introduced to the system.
I think we came to that understanding again of enough talked about for the time being on mesothelioma, lets enjoy the summer and worry about meso in Autumn.  Easier said than done because I know both of us think of it everyday or deal with something related to it. 
The other problem about drinking last night is all the good work of keeping my foot in the right position, Achilles heel pain had gone by last night, I have undone some of the work!  My bum and thigh are tender together with my back.  I was thinking of cancelling the Monday appointment with the physio and wait to see the Doctor's physio on Thursday, now am not so sure, although he seems to have done the best treatment but then it could be the use of both that has worked so well! 
We were due to go to a point to point today but having a bad foot I had to turn the tickets down, so glad I did, looking at the rain still coming down.  The BBC certainly got the forecast right last night, it did start at 11 and is still pouring down now.  Wonder what I can do today, I imagine both of us will be on that sofa at some point catching up on sleep!

Wednesday, 15 May 2013

Pains and more pains

I feel like a little spoilt brat at the moment because I am going to whinge about pain, my leg has got no better and now what feels like my Achilles heel is injured, which because of the way I am having to walk is making my leg hurt even more, now not only the top of my thigh but my bum, back, shin and of course the heel itself are either throbbing or aching or feel like I have a Chinese burn going on inside.
I really just can't stand any more pain, my ribs on the left feel inflamed, Monday I felt like I was coming down with cold and felt miserable, taking night nurse and diazepam because my body was going into overdrive.  How do people cope, I just don't know anymore.  I know I am fed up of pain, one seems to fade into the background as another appears, its a long road that never ends.
At present my chest feels like it has been in a vice on the left side, on a morning that takes a good hour before I feel like I have room to sit straight, but then it aches.  I don't want to start taking more morphine I just want to understand why pain is increasing, after all my last scan said I was inactive, ok haven't results for this, but am hoping for the same.
Maybe if it was a one off that we do go through, everyone has aches and pains sometimes in their lives, but I just feel I have been dealt the must unluckiest hand given.  I know that sounds self pitying but today that's how I feel.  I feel bad for hubby too, he sits there and can't do anything, I feel like he is having to become a servant for my needs and that isn't right.
Even my bum cheek hurts now, and as always its the left, my fear's are growing, I had the worst nightmare last night, probably brought on by my fear that is racing round my head, what if the meso has got to my spine?  If it is resting on a nerve in my back maybe I can get a nerve block for it but what if it isn't.  I have considered it not being connected but then why my left and why where the bottom of lung is where all the nerves are gathered in one big block. 
I so want to be pain free, to live and not be sat here feeling so sorry for myself.  What makes it worse is I know many meso warriors are going through much worse but even that thought isn't stopping me feeling like this.  Dear God please take the pain away.  Even sitting is painful.
Just had to get this off my chest because my mind is buzzing with meso.  Somewhere inside I know that a spot of nerve pain can be caused by no other reason than a stretch but its been weeks since it started, 4 physio appointments later and I am worse.
So my mood is that of the weather, grey and miserable.

Monday, 13 May 2013

Problems with life

Life with mesothelioma is never an easy road to travel.  The community of meso warriors are all involved in one form of treatment or another.  Decisions to be made on surgery or chemotherapy, then those who are doing well and haven't had treatment for years against those who just can't get the meso into a status of inactive.  The one thing all of us have in common is that we just don't know what is going to happen next.
A friend of mine went through surgery a year ago, although she too had a rough journey, her lung didn't want to stick back to the ribs either and spent quite a long time in hospital with a tube in, (thankfully I came home with mine), but she is having problems with her breathing.  The CT Scan isn't showing anything unusual but she feels herself that something is wrong.  Her weight has dropped, which I told her would be expected.  The weight loss doesn't seem to happen at the time of surgery but quite a few months to a year later, those lbs start falling.  This is caused by trauma to the body, it takes the body a while before it picks up on this, the brain deals with the surgery first, then the pain etc but sometime along the line our body then goes "hey something happened to me" and hence we have weight loss.  Had better write here this is my opinion only and gathered by only a few people I know who have had surgery including myself.  But I am worried about her, and asked her to ask for a second opinion.  CT Scan's can only show growth if it is over 3mm or the cut has happened in the right place, (the time the CT Scan takes it's snapshot).  It only takes 1mm of meso to make us uncomfortable, I should know as I felt mine return in the beginning of 2010 and then my USA radiologist noticed it in the April, it was a lot bigger in the December when my UK radiologist mentioned it.
Then you hear of other friends who are trying different treatments or have catheters in place to drain the fluid that gathers in the pleura space.  Mesothelioma makes pockets and it can be quite difficult for the catheters to do their work as the fluid can't drain the individual pockets.  This in turn makes breathing hard again. 
Many are currently going through chemo, the loss of hair sometimes can be distressing, my hair is fine and so when I brushed my hair or ran my hand through it and had loads of hair drop out it worried me, on our treatment we don't go bald but shed quite a lot.
Then the worry of if the chemotherapy will actually work, we know that Alimta (Pemetrexed) doesn't work for everyone.  One of the Warriors will be using a different chemo this time (4th line) and I for on am eager to see if it works.  Although my other friend has just finished his 4th line with a 3 chemical infusion and so far is inactive but didn't get the shrinkage which we all hope for.
I guess I am slightly worried, my scan was last Tuesday and although my oncologist is away I am hoping my gp will give me the results.  I have had some changes, I have to hope this is something to do with age and not the meso.  My worry is still this leg, what if the meso has grown and is now resting on another nerve?  Also a few new tighter pains in those left ribs, but that could be to do with my fat belly, see we all live in hope when we have this cancer.
It's Monday already and I have a busy week ahead, having been out of the office for nearly 3 weeks, I did get in a couple of half days so tonight I will probably come home and crash on the sofa.  I am having trouble with my eyes at the moment, they get tired looking at the screen but if I put on glasses I can't see as they are for distance, I guess I need an appointment, will be quite hard I guess to match my eyes as I don't need anything to read things on my desk or in my hand only the screen.
Have a good week everyone, don't forget to drop in on my warrior friends blogs and catch what they are up to.

Saturday, 11 May 2013

Out in Paperback The DreamWeaver's Choice

My book has arrived, all nice and printed and ready to for sale.  After a few problems on paypal I have it up for sale but heavens knows what has happened on Amazon.
I set it up (I think) when young Jack came to help do some changes, but can I remember about it - no, so trying to get back into Amazon on the paperback is impossible.  Also a friend in the States tried to buy it, they accepted the order a month ago but never sent details onwards.  This has been quite a concern so today, if I can get my brain to work, I am going back in and deleting to start again for the Paperback.
Liz, my good friend and proof reader, has taken away some 38 books to sell, Chris Knighton will be receiving 250 to start with for the MKMRF to sell at the up and coming events which leaves me the rest to hope people will buy.
Many are still old fashioned and like to have a book in front of them rather than the kindle version, although the Kindle Version will ultimately make more cash for the fund as there are no p&p costs associated with it.
If you don't like vampires, then think of the characters as assassins for the government or treat the book as a spy thriller, come on please get behind me on this and lets get funds in for the charity.

On a sad note have just heard my best friend lost one of her german shepherds during the night, today will be hard for her and her hubby, our dogs are family.  I dread the day when we lose our Lexi, it was 4 years this month since we lost our Tyke and the pain is still in our hearts.

Thursday, 9 May 2013

The British Sun Pipped Out

Home is where the heart is, in our case as well our beautiful dogs, but the sun has gone away again.  The beautiful heat and sun on holiday made my back feel much better, I didn't seem to wake up with as many pains in the ribs, only my leg!  We came home to sunshine and I thought yeah I can enjoy the feeling, but alas the sun is out till 10 then rain up here in the North of England.
We have guests who are ex pats from Australia and currently live in Asia, they have come to see us after meeting us last September and are having a relax.  There we were planning trips here and there and they just want to relax and play with the dogs. 
Today my book is being delivered here from the printers, I can't wait.  I have received an unbounded copy just to set my mind at rest the printing on the pages didn't miss out my first sentences.  I am pleased they are arriving and hope that I can meet up with Chris Knighton to give her quite a few to sell at her forthcoming events. 
I was going to cancel my physio with having guests but as we aren't doing much running around I may as well keep hold of the appointment and see if they can do anything else. 
I went for my scan on Tuesday, I was so pleased Jean was again the nurse in charge of the needle.  I had my elma cream on and off she went.  She told me the vein in my left arm is starting to move and become hard, probably due to the last chemo and the amount of times it has been used over the years.  I thought she was going to have to start probing to get the tip in but she told me after she had got it.  I didn't think veins could move the moment the needle went through the skin, you learn something everyday.  She is a wonderful lady who is now reducing her hours, I just hope that she is on when I need my next scan, I never have a problem with needles in this department, but there again she has administered about 95% of them over the years.  She lost her husband a couple of years ago, just as they were planning retirements, why does life do that?
It's 8 years since my Dad died today, I still remember the call at 7.30, I hadn't been that long since my last chemo treatment and I remember I hadn't really got dressed, just pulled on some joggers as my brother came to get me.  I think I was in shock, I had seen him only the day before but something told me then that I may not see him again, one of those 6th sense feelings.  I wanted to go back and see him but hubby told me I was being emotional due to the chemo, how wrong he was and how right I was.  I think he had given up, he died of a massive stroke, he was far to young at 74.  I am sure he felt guilty for my illness and that brought about his own demise.  Guilt eats us up and I wish I could lose this negative feeling.
It seems quite a few warriors are going through a hard time at the moment, Tess, Mavis and Debbie are on or starting another round of chemo, I am pleased to say Ray and Steve are at the moment doing well, I hope that I too will get a good result even though I fear I have a little growth, as long as it remains slow growing then it isn't too much of a worry as yet.  I have received some good news from a friend in the states, she has been receiving a new treatment at Sloan Kettering and is still stable, hopefully this drug will come into its own and maybe be the one that turns meso from a terminal to a chronicle disease.  My other friend's husband is having a lot of fluid around the lung.  Back in 04 after my surgery I had fluid, but they couldn't drain it as the fluid had gathered in pockets, now from this friend, I understand those pockets are fissures created by the meso.  It is frightening when you can't get fluid out, quite a few people I know tap fluid on a daily basis.  This to me is a brave thing, how they can have an alien tap fitted to them scares me.  My body can't stand cannula's inside my veins so imagine having a tap constantly attached.
On such a note I guess I will close for today but post a picture to remind me of the lovely weather we left behind together with the new friends we met on the cruise.
Don't I look healthy, I did look funny in the bikini where I had remembered to cover some of the radiation patches and not others and also burnt.  My skin has changed again due to the recent chemo, so if you are out sunbathing remember to use factor 50 on scars and radiation patches, 30 and 20 on the rest of you.  Don't miss any parts of the skin otherwise you will end up multi-coloured!
Maybe I am getting a little to old to wear such clothes!

Saturday, 4 May 2013

Home Again

Why is it the days seem to roll into one when you are coming to the end of your holidays and what you did on day one you can't remember.  The holiday is truly over and this morning I will call in to work to try and catch up before Monday morning's onslaught of everyone needing a piece of me.
I have to say I have enjoyed the time away, ok a few ups and downs, my leg being the most annoying and hopefully when I see the physio on Thursday I may get some relief as the massages didn't really do it.
The internet access drove me to distraction along with only having the Ipad to work with, how many of you can use this for typing and emailing I just don't know, I found it hard going most of the time.  I wish I could say to Amanda I have brought the sunshine back for you in a big bottle but unfortunately it never seems to reach us, as we flew through the blue sky's yesterday across from Italy I thought hey it may be nice and sunny in good old blighty but as we crossed the white cliffs banks of cloud approached us.  In fact our decent was through heavy thick cloud that whipped the plane or way and another.
I read a couple of good articles on living after cancer and one on MKMRF.  Living with mesothelioma certainly has it's ups and downs, this pain in my leg and butt cheek for instance, I am worrying, hopefully needlessly, that it is a bit of growth on the bottom left of my lung which is now pressing on a nerve instead of me perhaps doing something like sitting the wrong way and pulling a muscle.
The last day of our cruise was in Sorrento, but you know I just couldn't be bothered to get off the ship and visit, yes it looked lovely from out in the water and I should have made the effort but I needed a day of relaxation.  I felt guilty for not visiting but I am sure we will get there again.  We spent a cold night up on deck having dinner with people who were strangers 10 day ago but became friends over the course of the holiday.  Because of the internet I am sure we will be in touch, not like the olden days where you just could never be in touch so easily.
Two of the party we befriended have a large Doctor's practise in Pittsburgh, they told me they hadn't had a case of meso for ten years.  Pittsburgh was a notorious hot spot for this disease and now they have a total decline so how come the rest of the world is still on an upward rating.
The dog's were certainly pleased to see us, we dropped the bags off and took them straight out for a walk, I haven't seen both tails go so much from left to right for ages.  Bear ran around the fields sniffing who had been around his property over the last week, boy did he have fun, whereas Lexi stayed by our sides.
Well that's it for now, have a busy night tonight, a 65th birthday party to attend, just hope I don't over do myself today and find I'm tired!
Time for me to catch up on everyone's blogs and see what's being happening while I've been away.  I truly hope that Amanda and Ray have finally found themselves out and about enjoying themselves.