New Thoughts

For the first time since I can really remember I really do not want to go back to work.  Normally I would be chumping at the bit to get back to work after a week off, even when I was recovering from surgery I just wanted to be out of the house and back at work.  Yet the thought of returning to work is not on my Want To Do List. 

I have enjoyed been in the house, maybe because it hasn't been an enforced one I don't know, but I wonder whether it would last if I did pack in altogether. 

My stomach is still playing up and for the first time in a couple of weeks so is my 3rd Boob, its nipping but I am going to ignore it.  I am going to stick with what I have pledged myself, not living from scan to scan, but enjoying the time and try not to worry or jump the gun on any news about them.  Although for the past week I haven't had any discomfort to remind me I have meso until this morning.

Hubby and I spent hours yesterday trying to understand Lightroom 3, 2 manuals later and I think I am non the wiser, there again I have never been one that reads the manuals, I usually just load a program and play with it, that's probably why it takes me years to work out the easy routes on things!

Stay at home with us

The wind is blowing so bad outside, even the birds are struggling holding up, we had planned to go shopping today but I am bowing out, not only could I not walk in this but breathing would be difficult.  Just have to find something else to do.  Although the dogs are sick of photo lens's being in the faces every five minutes!

Today I think I will try out photoshop, I have never used it before so this should be fun, although I can't really take the fine lines out of Lexi's face! 

One last day of freedom so I plan on making the most of it. 

Happy New Year

I hope that the new year brings new hope and new treatments for us, what a wonderful start to the New Year if a Miracle Drug was released and didn't just help 40% of us but 100% without having side effects, surgery or sitting in hospital waiting rooms for ever and a day. 

I must admit I have enjoyed not going to work and spending time at home, although most of my time has been trying to get an Ipad 2 to work correctly (I'm sure its faulty),  practising with my Camera (the dogs are fed up with a great big lens being shoved in their faces) and of course drinking lots of Tea. 

I have heard from a guy in Poland that is looking at a trial in Finland see the link below

http://www.docrates.fi/en/docrates-cancer-treatment/oncolytic-viral-therapy

It is a virus therapy and the above link will take you to the address to enrol.  I take my hat off to this gentleman, it's his mam that has the meso and he flew to China to get drugs to help her. 

Another meso friend is off to the Bahamas to take her husband for Immune therapy treatment, seems quite a few of you are on the move.  I have also heard from someone else who has been stable for 3 years since diagnose and is only now having to look for treatment.  This makes me wonder whether we do get on the treadmill too early.  The problem with meso is that it doesn't follow those patterns of other cancers and doing right or wrong doesn't come into the equation on when to do treatment or wait.

I have certainly enjoyed spending time with hubby but I have to admit I haven't been across the door step.  This morning Lexi licked my face at 6am, she wanted me to come downstairs and feed her biscuits, it didn't occur to her that she had biscuits in her dog bowl! 

I nearly put myself through cold turkey with regard to the pregablin, because of the 7 day rule I couldn't order my tabs on line, then I remembered on Thursday ordered them and then I forgot to collect them yesterday.  Thankfully the chemist was open this morning otherwise hubby may have had to hide the knives again. 

I wish you well for 2012 and say goodbye to 2011. 

Dishes All Done

Christmas Day 2011, would I have dreamed I would still be here back in 2008.  I am still unsure whether the operation was too early and if delayed,  would it have brought more time this side or was it too late hence its return.  Wish we had a crystal ball sometimes.

Last night I had a strange dream, I was talking to myself in the mirror and I was saying 'it wouldn't have made any difference' so it is obviously on my mind when I don't even think it is!

I hardly ever go back and read what I have written but I was checking out my thoughts in 2008 at Christmas, I wonder if I had started it back in 04 what would I have written then.  I believe the blogs have been a way of helping me through these days of happiness and torment.  We live 3 monthly always waiting for the next scan date, the next scan results, the next line of treatment.  We can never let go of the 3 monthly cycle that we have become apart of. 

I seem to live in hindsight and always seem to wish I had done this or that.  Since October my stomach has been fine, but 21st December I woke up with that horrible feeling, so once again back on the sulfcrate or whatever its called.  I have got use to not waking up with it that I have forgotten how good it feels, until it has come back.  Its the same with the meso, you forget how good life is when you are in remission - probably because we are always worrying that in 3 months we will be told its back!

Come what may I aim to enjoy this next year, I have so much I want to accomplish - new designs for a small housing development is the main one (that's if I can sell the ones we have built!), learn how to use my D3s camera and take mountains of photo's of the dogs and whatever else I can catch. 

I take my hat off to those on trials at the moment, Tess Gulley seems to be doing ok and maybe this drug just might be the answer to our prayers.  In the meantime I was told that it would be unlikely for any hospital to allow a non UK registered Doc to work in any of our hospitals.  No wonder we never get far in advancements!

On that note I am off to enjoy my day, lunch out with old friends (in both ways!)

Merry Christmas 2011 - My 8th since diagnosed with Mesothelioma

While I visited the blogs this morning, hubby took the dogs over the field and then it was time to start what hubby has looked forward to all month ...  baking day.

Our neighbour arrived just before we got started to exchange gifts, then in the mist of making the sweet pastry we had another visitor.  Every Christmas Eve Mark arrives with a beautiful bunch of flowers, he has done this since I was diagnosed.  As we stood and chatted I mixed one of the pastries and hubby measured out quantities for the inside.  I think Mark was amazed as his wife never lets him in the kitchen and to see both of us baking together was quite an eye opener.   We baked non stop for 6 hours and looking at what we achieved I wonder where all the time went!

The rich sweet pastry was a nightmare but well worth doing, I can't wait to eat the sweet things but I had to make do with licking the spoons clean and wait until the family arrive tomorrow to get tucked in.  Of course the dogs weren't far away hoping for something to fall their way.

Bear, who can't stand the heat refused to leave the kitchen, thankfully he sat on the flooring that hasn't underfloor heating but he was still getting the heat from both ovens going!

Only two last jobs left, one - put the presents under the tree for the dogs and two - remember to put the Turkey in .. hope I remember!

For my 50th hubby bought a bottle of Krug Clas d'Ambonney 1995, we decided tonight we would celebrate all our hard work and open it.

So as I absorb the bubbles I wish you all a MERRY CHRISTMAS and I hope we will all be around next year to celebrate another.

Christmas Spirit

The Christmas elves out delivering their gifts

I was just looking at some old photo's to start a new blog for those photos that never get aired and the door bell rang, no wonder Bear was doing a weird bark - seeing these two under the lights at the gate would make any dog wary.  They will certainly have helped the shoppers at Tesco's get in the mood as they went shopping like this.

I want to thank Liz at Mesothelioma UK for assistance in tracking down a Doc to give a review of my seeding.  I am trying to find a hospital that may be interested in looking at cryo-ablation and allowing Dr Abtin to demonstrate his technique.  I strongly believe cryo to be a good way of reducing pain where those nodules stick in your back or rest on a few nerves but also for de-bulking. 

The problem with our doc's are that if it doesn't give a cure its not worth looking at, but lets face it, chemo isn't a cure, radiotherapy isn't a cure, yet we go down that route.  Surgery is hard but still not a cure, please let us give cryo a chance over here and prove it can add value to our quality of life. To be honest the cryo doesn't make you as tired as radiotherapy, yet radiotherapy will be used in severe cases for palliative care.

Those of us who are still alive after more than 3 years have a hard time trying to get Doctors to look at us as other than lucky.  We are stuck between a rock and a hard place.  I don't want to jump into any treatments at the moment but I do want the plans in place for when that next move has to be taken. 

My wish for Christmas is Hope, Hope for cryoablation to be used on mesothelioma, Hope for a golden bullet to destroy the cancer cells, Hope for a new Chemo that doesn't kill us, but above all

HOPE that all of us get through Christmas and The New Year and still be here Next Christmas

Merry Christmas

One miserable day and then

After starting the day in a real downer and being miserable I finally shoved myself in the shower and set about deciding whether I was going to let meso get me down or find some christmas cheer, the latter won.  I also noticed that yesterday the hours didn't fly like they usually do and we seemed to accomlish quite a lot.

While Gary went to the butchers and do some errands I took the time to wash down Bear's marks off the walls, run the vac round and dust in those places that don't see the light of day.  We decided that we would put up the tree's, I say tree's because we usually do 4!  This year we cut it back and only did 3, thankfully only 2 have decorations as such the other is a white fibre optic thing that flashes and just needs some red beads wrapped round.

Of course when Bear came in after demanding to be out in the cold most of the day he went mad, I am sure he remembers Christmas from last year and went in search of the nodding dog.  You know the thing, they were big a couple of years ago, well he found it and dragged it into the middle of the living room, gave its ears a good washing out then pawed the front door to be back outside again.  

Lexi has managed to clear a good 5inch diameter of hair away from her thigh and it looks tender and sore.  Cleaning it causes her pain but what else can I do.  I have rubbed E45 into it hoping to ease the itchiness it must be causing.  We don't know whether the tablets she is on for her bum are making her skin so sore, but its that maddening circle if she doesn't have the tablets her bum is worse. 

Today we went to Pets at Home, talk about Christmas costs for children, the cost for dogs is nearly as bad.  We laughed about bringing Bear into the store, his tail with enthusiasm for meeting people would have everything knocked to the floor.  There was a little husky pup and it had its tail between its legs and growled quietly at everyone that past it, I stopped and chattered to the owners who said they were trying it out, never heard of that before.  I felt like picking him up and bringing him home.

I know that I shouldn't moan in comparison to a lot of meso sufferers I have done well.  I read in the BLF about a man who only lived 6 months after diagnosis, it kind of puts things back into perspective but then we shouldn't be in this position to start with.

Don't forget to light the candles on the 28th, follow the link

http://www.asbestosdiseaseawareness.org/archives/3196

For those on chemo I hope and pray that you have some relief from the side effects over Christmas and for those in remission I pray it stays that way and for us who have growth may something be out there.