Sunday, 26 February 2012

Weekend Walk in the Wind

It was a great Saturday and Sunday out with the dogs.  Although hubby had to drive down the field for me as the wind by the gate was too strong and I really needed to get some fresh air into my lungs.  Although it was quite windy over the woods I took my camera and got a few shots of the dogs doing what dogs do, sniffing every patch of grass where either a Rabbit, Deer or Fox has walked over.

The trial I was going to see about on Friday was pulled as a person on it had terrible skin problems (something like his skin was falling off).  I thought I was just going to authorise them to get a sample of my tumour and talk about what they have on offer - not to actually sign the dotted line, guess I was saved from making that decision.

It was great too seeing Chris Knighton on the regional news along with two other meso sufferers that I know, Peter by email only and Chris who went through Chemo with me back in 04.  They both seem to be doing so well, although Chris has always been in a far better situation than me with this cancer.  Good to see that the alimta did do its job there.

My scan is looming, and hopefully by Friday I will have the results - that's if they go to the Doc's.  I'm not sure now where they will go.  I have a feeling I should be ok on most of the growth apart from where my third boob resides.  Have had some tingling and nipping movements going on in that region, although saying that my iron box in the left side feels a little more solid than normal.  Yet it doesn't necessarily mean bad news, it could just be a muscle or nerve has touched the damn cancer and is sending peculiar messages to the brain.  I am noticing this time round that I do get short of breath, something I never really experienced before apart from when I had pleurisy, and I must admit I don't like it very much - uhm maybe I should rethink the what the results will say.

I was just telling Lisa today that it was April 10 when Dr Abtin said he saw growth on my left lung, it took till December 10 before that was recognised on the scan results here.  It will be a year soon since I went back to LA for cyroablation and if things continue in this pattern I just don't see a problem for a while apart from being uncomfortable in bed and waking up and of course the burning and nipping and not forgetting breathlessness.  Mind the latter may also have something to do with me being sat in front of this damn machine and smoking everytime something went wrong on the website that I am doing!  Why did I ever let someone give me a drag of a cig - even worse why was I so weaked willed to accept it! 

Guess that's it for today, I hope that however you are experiencing meso be it you or a family member I hope remission is on your side.

Tuesday, 21 February 2012

Stats for Mesothelioma

I was taken aback when the Sunday Sun rang to ask what I thought about the release of the National Statistics releasing figures naming the hot spots of asbestos related diseases and the numbers involved.  I wasn't surprised that the numbers are rising infact I think I said many years ago that we weren't even near the tip of the ice burg and many more would suffer the same fate as myself and others.  I remember back in 04 they said that meso would reach its pinnacle around 2015 and then fall, some short sightedness on their part I believe.  The Sun also wanted to know what I thought about the support we were given having such a terrible cancer, I asked what support was she on about because if there hadn't been Mick Knighton MRF or June Hancock there would be hardly any support at all.  We keep being told that we have this and that but show me where?

As for the photo, its prior my eyes and it was taken 6 weeks after surgery in 2009 when I did my TV interviews.  The Sun also interviewed me and obviously kept a few photo's.  If I still looked as good (although I am sure the photo was airbrushed heavily) I wouldn't have had my eye's lifted.  But thanks for the comments friends, yes I do have blue eyes!

I was watching Upstairs Downstairs the other night and didn't realise that gas masks actually had asbestos inside them.  I wonder if that is why so many of our parents have COPD and many lung disorders in older life.  My mother was born in 1926 and most of her friends all had COPD, could this be the reason, it certainly is food for thought.

I managed to get over the fields on Saturday with the mutts but the wind kept taking my breath away, Sunday the wind was worse so I stayed home and worked on the website.  Dreamweaver is still winning the war but I won't give up! 

The trial nurse from Bobby Robson Cancer Centre rang yesterday so I am going up to see them on Friday.  They would like permission to sample my tissue for proteins which I think is a good idea.  Lisa in the States has sent her hubby's tissue to a place where they test to see which chemo works on the cancer, I don't think we have that resource here yet although I do know that MKMRF is sponsoring a tissue bank.

Funny thing though, yesterday in the shower (where I tend to do my thinking) I decided that I would do nothing at the moment, the meso has been back 2 years this April (by the CT Scan) and if it stays slow then I should just keep doing what I am doing.  I know it is affecting me in shortness of breath - I can't chase Bear around or kick the football for Lexi but I don't need to run a 100metres so why try.  I have gained weight, I still am pained in certain areas and feel like I have an iron cage around my left side but what's new its been there forever and you do get use to it.

Debbie is off to LA to receive an award for her work with spreading the word of meso, I hope she gets to see some sights, not like me and hubby UCLA was pretty much all we saw when out there.  But its good to hear that she is renowned for her work.

I do promise to load a photo of before and after of the eyes, I will say the best thing though is my eye's not getting tired early afternoon, the downside of course is that I carry on working on the computer.

I think overall this has been a good month for me, so far no fight or flight sessions, no Nothingness days and seeing the start of the spring flowers pushing through certainly lifts the spirit.

Guess that about covers everything from up north, to all in treatment my thoughts are with you because none of it is easy.

Thursday, 16 February 2012

Life itself

I know that we have been given a rotten stack of cards but the last couple of days 3 people I know have experienced unexplained deaths.  They didn't have meso just normal people you know that one day are alive, go to bed and don't get up.  Someone said to me considering you were suppose to die quite a while a go it just shows you never know whats around the corner or when your number is up.  Its quite true really, the only difference is these 3 didn't have to worry about dying or fighting to stay alive as far as they knew everything was fine and dandy in the garden of health.  Knowing what's a head is a lot worse than not knowing because we are preparing to fight it all the time, and that takes energy even if we don't realise it..

I read that 2 Italians were awarded 16 years each for negligence with asbestos.  One of the guys is 90, does locking up an old man of 90 really do any good.  Don't get me wrong if the use of asbestos and its dangers were known by him and his fellow shareholder then they do need ousting and they should compensate those they inflicted this disease on, but we don't know the full facts of when they were running the business, was it pre or pro 1965?  The article wasn't explicit enough so I am holding judgement on the case for the moment.

In the early years of this cancer hubby took me off to Dubai for Valentines and had planned to do the same this year (so he tell's me), but alas with no dogsitters and Lexi not too well he went for the normal and had flowers delivered. 

Our first Valentine I sent him an orchard so this year I sent him an orchard plant.  Who say's romance dies as you get older.

I truly hope we manage to get back to Dubai or somewhere like Barbados to celebrate next year's Valentine's Day.

I hope you managed to make the most of the day where ever you were or however old you are.

Monday, 13 February 2012

Am I or Aren't I

I can't believe this time last week we had a garden full of snow and this weekend it was just bitter cold and icy.  I have had a strange week too, after feeling utterly down over my aged looks (vanity I know) then releasing how much more the camera brings up than the naked eye (I felt a tiny bit better) and seeing that my eyes know longer want to close at 1pm or there abouts I felt mentally lifted.

The body front, unfortunately, isn't as healthy as my mental state.  I have had more aching in the left and fire balls occurring this week.  I know that my 3rd boob solid lump has faded but I think that is more due to the fact I have weight back now in that area and have what I would say is a reasonably chest instead of two thin bits of skin falling forward when I lent over - too much for the imagine to deal with I know.  But the lump has hidden back within the fat of the boob for want of a better description.

Sunday, 5 February 2012

Snow, snow, snow

Just a quick note to say I hope you all enjoyed the snowfall as much as our family did today.  The sun was shining, no breeze and an altogether great afternoon.  Unfortunately I think I snapped off some 450 photos, which I have had to trawl through and delete the duffs. 

We also took the opportunity of blasting both the dogs fur ....   as you can see Lexi really doesn't like the experience and stuck her tongue out as I snapped away.

Hope everyone managed to have some fresh air today, it always helps when the sunshines.

Saturday, 4 February 2012

Old Symptoms

I have had so much going on that it took me so time to realise that I am reliving some of my symptons before diagnosis days.  The pattern of a stiff neck, insomnia and nightime sweats.  I was sitting yesterday infront of the wood fire massaging my neck and it clicked into place.  I didn't need to get my old diaries out as I knew as soon as the penny dropped.  Obviously, I can't produce fluid as I have no pleura for the meso to annoy but the rest are in place.  Over the last year I have had a few of these and if I had written them down I guess it would coincide with the growth of the meso.  I hope I am wrong but I think my meso is doing what it use to do, have growth spouts every 3 months.

Since having surgery on my eyelids I have had hubby take a daily photo of my face.  When I went to look at the photo's of myself, and I was shocked.  When did I grow so old and so haggard.  I have no weight at all in my face,  lips are drawn no weight in my cheeks and honestly if I met me I would think what a miserable old cow.  Having gained weight on my body how do I put it back on the face?  I remember my hairdresser, Tarn, telling me he had fillers - think I should ask what they are.  I certainly wouldn't want to wake up next to my face every morning, so God knows how hubby does!

Yesterday I had the house to myself and sat infront of the damn computer all day.  I was trying to work out this new program Dreamweaver that I have for web design.  Honest I even have the dummies book and I think I must be a dummy.  After 6 hours I still haven't achieved anything - they say technology is getting easier so I guess I must be getting dumber.  I originally wrote the websites in Frontpage (sounds like I do it a lot but it was just jansjourney and the windlestonehomes one) but Frontpage doesn't work anymore, half the functions don't load up on web browsers - technology improves and old and tried systems no longer do.  I had planned on a little relaxation, catch up on a film or two, maybe change a few things around in the kitchen, you know women at home things, instead the day flew by and in what I class as limited time, the day had gone.  Maybe I should rethink what I want to do with my life rather than let things I don't understand use that precious time up.

I have no idea what my plans are today, I only know I will not be sat in front of the machine all day, whatever you are doing, as Linda would say "Do something Positive".

Thursday, 2 February 2012

Round One!

What a snip yesterday, after worrying that I was having a general all turned out ok.  Just a little sedation, which I don't think worked, and a few jabs in the eye area and off he went snipping and stitching away.  Dr Boyce talked all the way through while doing the procedure, asking questions about this and that.  I kept my eyes shut and thought I hope I don't move my eyebrows much while answering otherwise I'll have a few zig zaps around the eyes.

My pre-assessment was carried out by a student, which thinking about it is really rather stupid, she didn't know anything about the procedure, the drugs, past history, didn't understand the word mesothelioma, let alone spell it.  She was a sweet girl but I think pre-assessment is an important part of any operation and they really should have a better understanding of the questions before been let loose without supervision.  Same with my discharge, it was a nurse who didn't speak the best english and her follow up of applying the creams etc was totally different to what Dr Boyce had said on leaving me in the Recovery room. 

No matter, I got home in one piece, hubby can't look at me, he and I both have a fear of eyes.  I can't find any sunglasses to wear which aren't overdark so you can imagine the scene in our house, he either sits behind me or I behind him!

The pain wasn't the worst I have ever experienced but my cuts were burning by the time I got home, the paracetamol didn't touch so I just took an extra severdol, went to bed and this morning they are ok.

Unfortunately I am stopping at home today and annoying hubby!  At least I have managed to get a project done and I think TV is the order for this afternoon.

Time for a coffee and ponder on the good things of life.

Wednesday, 1 February 2012


Having heard how Harry is doing so well brought back memories of my own operation and how I thought I had done well leaving hospital after only 11 days.  Strange though because back in 04 when I went in for the VAT, which was intended to be a quick look inside to see what was happening I ended up having a 5 hour operation and tumours removed then.  Although the pain on waking wasn't anywhere as bad as the full on operation, I was bleeding internally and the fear was I would need more surgery during the night.  In some respects I guess I have had a decortication carried out twice!  It wasn't until I was talking about Harry that I thought about this, so if things go as well for him as they did for me with pain after my first partial decortication then he will do well.