MRI Jitters

It isn't often I get the jitters about going for scans etc, but it was an MRI scan that showed up my original mesothelioma, not that they knew it was that then.  Just my chest lit up like Blackpool illuminations with white spots everywhere.  But it was still another year and some before anyone really looked at it.  I guess because I had it done privately no one thought of checking it further than to see if I had fluid, which I did.  The scan was never looked at again until the surgeon had a peep and knew something was in there.  But hey that was some 10 years ago and this one is different right?  This one is to see why my back etc is causing so much trouble.

 

I came home from work crippled again yesterday, only sitting in my chair for 30 minutes at a time, I don't know whether its the position or not.  Having just got up I have been flat all night and my back seems a little better, hope it stays that way today.

 

I did go and lie in the sun, although I spent most of the time asleep, the additional morphine is making me tired, so last night I knocked the additional 30 on the head and will try a extra nerve tablet today.

 

Bear was a tinker yesterday and stole my tea, he was eyeing it cup up for ages on the little table so I had to give in.

I don't know about everyone else but the swallows around our garden have been flocking in dozens but they are so hard to actually catch on film as they don't stay still for long.  Hubby had his camera out all day and finally managed to snap one just before it took flight again.

Such beautiful colours you would never think they had blue wings when you see them darting here and there.

 

Mavis has being asked to round us all up and fill out this questionnaire on behalf of BLF for patients and carers alike to say what kind of treatment they would like to see.  It is short but please fill it in.

http://www.blf.org.uk/News/Detail/New-national-lung-cancer-survey-launched

 

I am so happy to read that my fellow bloggers are all doing well at the moment, Steve has been given the "Stable" news, Tess has gone for no 5, therefore must be having good results, Mavis is holding her own on the new treatment, Debbie is improving day by day.  I haven't heard from Amanda for a week or so, so I am hoping her and Ray are doing well.  One of the sad stories throughout face book is that of Janelle Bedel, her journey is coming to the closing chapters. 

 

It is heartbreaking when a person so young is diagnosed with this cancer, it is heartbreaking when anyone is, but especially more so when its a young mam.  Janelle has earned the title of Wonder Woman, I just wish a treatment to prevent death was here and available now. 

 

Excited to say the sun is out again, I hope for everyone else it brings the best out in you and you have a wonderful day.

I have also posted an article for mesotheliomahelp.net which you can find here:
http://www.mesotheliomahelp.net/blog/2013/06/mesothelioma-survivor-weighs-in-on-being-her-own-advocate

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!

Runny Nose

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

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

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

Breakfast is calling ..

Heat in the Bones

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

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

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

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

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

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

Sunshine!

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

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

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

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

Jan

Meso in the English Sun

This week has been one of the worst in my life, and for once it has nothing to do with mesothelioma.  I must admit though that my pain hasn't been that bad for UK. 

The pain suffered after the flight to Majorca wasn't as bad on the return home but Tuesday was my worst day for pain in my back.  I have noticed that my kidney area is starting to stiffen up more than before.  As you all know I love the sun, it makes the aches ease and usually removes all the pain, but due to circumstances this week I have decided that stress can also cause alot of the pain.  Last night after spending the afternoon in the garden I ended up taking a muscle relaxant to ensure I didn't wake up all stuck together.  Sometimes I wonder if I still have endo as well, which could explain some of the feeling like I am stuck together feeling.

Since Wednesday afternoon I have been home in the garden,  I can't remember a day that I have never  turned on the computer and done work, linking in and sorting this or that out.  I decided enough was enough and walked but it isn't that easy when the company you work for is owned by your own brothers. 

I certainly chose the right week in terms of the weather as you can see me and Bear have enjoyed spending this time together, and he has certainly enjoyed the extra treats that have been on the table by the sunbeds!

Trying to load his and Lexi's photo's but it just isn't working tonight and the system seems to be stalling.  Never mind you will have to put up with me and bear together.  I looked at this shot and can't believe how much weight I have managed to put on.  This time last year I looked like a skeleton, I didn't have any arms, just pins and my belly was non-existent.  Well I guess the weight is good for me just wish it didn't mainly sit in the one place us women hate... our stomachs!

By using Factor 50 on scars and radiated area's I have so many different shades of suntan, I know I am getting on and really should wear a full bathing suit but my mind still thinks I am young (well some days anyway).

With the light nights and spending so long outside I have just realised how late it is, usually I would be in my chair by now fighting to keep my eyes open and at the same time dreading going to bed knowing I will wake up with pain in the morning.  It is amazing how the sun can change your routine.  Speaking of routine, Lexi has come into season again, I always remember our dogs having less as they got older so I think it must be something to do with having a boy around that has changed her clock.  By the end of this week she will be rubbing up against him and giving him the come on, he will again stop eating and follow her everywhere panting and breathing heavily.  I hate this period for him and thought of moving to my parents house for the 4 day period, only trouble is if I go their I start crying! 

Still a lot to think about and if the sun stays out tomorrow I may find myself in the garden, decisions we have to make.