Saturday, 31 December 2011

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

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. 

Tuesday, 27 December 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!)

Saturday, 24 December 2011

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.

Thursday, 22 December 2011

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

Sunday, 18 December 2011

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

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.

Saturday, 17 December 2011

Christmas Blues caused by mesothelioma

Each Christmas this miserable feeling keeps taking over, is this my last one?  I know this is not the way to think but this year more than ever I feel at a loss.  Xmas 08 I was sure was my last and I was saved by surgery in the January, Christmas 09 I didn't worry, after all I had gone through major chop chop and all the meso was removed.  Christmas 10 I started tothink the same, the results had been confirmed that the meso had returned, now Christmas 11 the meso is still growing.  Yet last Christmas I was thin and gaunt, this Christmas I am carrying weight and look healthy, yet I feel unwell for want of a better word.

I should be starting this blog on a high note.  A few of my meso circle have had good results, all stable and I am so happy for them and I had intended to point out the positive side of how treatments can work and the stats are wrong. 

Has my negativity about this disease brought it back?  I remember hearing that Alan's and Danny's had turned nasty and then suddenly I was worrying about my own and feeling guilty that I was clear and then before I knew it I had changes.  After completing surgery and probably only gaining 18 months of a clear chest the odds in my favour of out witting this aren't great. 

I need to shake off this feeling of doom and start getting into the spirit of life, never mind Christmas!  Strange as well, knowing Lexi has cancer I am watching her like a hawk, she doesn't look that well in her eyes or is it just the cataracs, she is constantly chewing her thigh as if to get into something and rip it out, which makes her walking painful.  I couldn't bear it if Gary lost both Lexi and I the same year it would be heartbreaking.

We are planning on putting up the Christmas tree's today, one week to go and I still haven't sorted many presents out, let alone got Gary a card....What's that internet one called, maybe I will just hook up on that and get one done!  I did spend a couple of hours last night creating a photo collage for L & C, pictures of themselves from when we went on holiday.  It actually worked and fitted well into the multiple photo frames.

My heart seems a lot heavier at the moment, which doesn't help, and probably made worse by the fact that I know the meso is growing back on the pericardium (or false one in my case).  My breathing isn't the problem its this feeling of a large lead ball in the centre of my chest that is causing the discomfort and I have no idea what to do to get rid of it. 

I can't believe this was us in 1996, looking forward to such a bright future, I wonder if we had known then what would happen now would we have done things differently.  Gary was told he had 1 year to live 11 days before we got married, (it turned out to be a false alarm 2 days later,) and I swore I would make that 1 year the best he ever had. 

What I should be doing is making his time with me the best he ever has so instead of being married to a whinge bag he will remember the good times. 
Note to self .. get happy

Tuesday, 13 December 2011

We are lucky

I was at work yesterday and released that over the years nothing much has really changed in my life, apart from taking painkillers, having had major surgery and all that comes with meso but there I was still sitting at my desk where I have been for at least the last 24 years. 

Its past 12 years since I first collapsed at work where I couldn't get any oxygen and my lung felt totally stuck, but in those 12 years my life in its day to day routine hasn't really altered that much, apart from if I don't feel right or am cold I just don't go to the office. 

How could I not be lucky having such a great hubby and when you look at this fellow how can you not smile when he comes bounding over like an exocet missile.

The worry of this cancer and its growth is never far away from us, even if we don't think about it or mention it, someone throughout the day will.  My new approach is to have a picture in my mind to make me smile.

Countdown is on for Steve's next X-Ray, I like the rest of your readers are rooting that the results are once again stable so you can relax for Christmas.

To everyone else with meso I hope that your results are stable or at worst be the same as me, slow growing just wish we could starve it!

Have a good day

Sunday, 11 December 2011

Christmas Thoughts

It's that time of year again when the planning of Christmas is the talk on everyone's lips.  Our Christmas list has reduced greatly over the years, with the loss of my parents, the nephews and nieces all grown up (and who prefer to have money).  I use to love the days out shopping choosing this and that, these days its flowers delivered to friends and to the last of our elderly Aunts and Uncles.  The internet is a saviour for shopping, keeps us from the germs that are flying round but it just isn't the same. 

Our Christmas tree will be full, not for us, but for the dogs.  Although we haven't even started buying them two anything yet!  Hubby reminded me its only 2 weeks to the day yet for the last few years Christmas seems to come and go without the fun or excitement beforehand. 

This weekend has been a weekend totally spent together, I missed work out on Saturday and we took the dogs for a wander.  Coming home we decided to have a baking day, my gosh the flour was here, there and everywhere.  Neither of us really eat a lot of sweet things yet me made chocolate mud pie, maple and pecan tart, flapjack, sweet scones and cheese scones.  I felt stuffed before I even tasted the finished goods.

Today was another good day for dog walking, no wind and it was so quiet over the woods every few seconds the dogs kept stopping and going on point as if to expect something to happen.  I think they were expecting a deer or fox to pop out.

Lexi seems fine, I guess being a dog she doesn't understand what is wrong or potentially what could be wrong.  Often over the few weeks before her operation Lexi was always trying to eat grass yet since she hasn't bothered.  This has given us an idea, must dogs eat grass when they aren't well, its instinct to get rid of anything nasty going on inside.  Next time she starts eating grass she will have a full body check!  We gave them both a blast to clear their dead skin, Lexi loved it but Bear just thought it was a game.  The blaster looks like a small jet engine but certainly blows the air out at some rate.  The dust held within their fur was amazing, white dust flying everywhere. 

My job tonight, to give them both a good brush, just need to hold Bear down so I can get to his under carriage - an impossible job.

Hope your weekend has been as entertaining and normal as ours, the best in life is free, spending time with those who are close to you and those you care about. 

Friday, 9 December 2011

Another Cancer Case

I can't believe I missed out something so important to me on my last post.  Our Lexi's opertion went really well and her lump was removed from just next to her nipple by her hind legs.  Even the vet was pleased and thought it was clean. 

When we went Monday to have her stitches out, Ian gave us the news that it was cancer of the mammory glands.  It had managed to enter the mammory duct.  To look at Lexi she doesn't look affected by cancer, mind saying that who ever does? 

We have the decision of leaving things as they are, removing all her mammory glands or one at a time if they become lumps.  The problem with cancer is that it can spread to other regions before the lumps appear!  She is 10 1/2 we already have problems with her bum, her skin is sensitive and now to have to think about putting her through a mammoth op is unbearable.

We have made the decision to leave things as they are at the moment, I know too well the jumping in and ripping out of cancer and other organs.  This will be my 3rd dog that has died of cancer, Jagar being the 2nd at only 2 years old, and our Dana at 10.  I only hope it is slow growing for Lexi and we have another full year of her running through the fields and lazying around in the house.

Tuesday, 6 December 2011

Try and be Stable Meso

I went to see my oncologist last night, the one who organised my radiotherapy for the 3rd Boob.  We discussed me having a NHS team back in place and what everyone's views were.  Importantly, he asked what mine were about what is happening or not.

In my own mind I am giving chasing the treatments a break, It has been 3 months since the last treatment and 9 since needles were prodded inside.  I left a copy of the scan and asked him to review it, and give his thoughts.  Whether he does give them to me is another question and I kind of know the answer because he never does.

I have this terrible habit of going back over everything and wondering did I do that too soon, should I have waited or did I do it too late! I waste my energy on things I can't do anything about.  It's like the operation, I was ill at the time, but looking back I wonder if I was as ill as I was .. you know what I mean.  Could I have held back but then would I still be here?  My oncologist tells me he wouldn't have dreamed going through it before but after knowing me, if he had to make a choice he would seriously consider it.

So at the moment I am just going to enjoy the forthcoming months, keep checking up on what is going on out there, but then I am still worried that I miss out on getting on a trial that would work and miss the boat!  I pray this friend of mine stays slow and starved of whatever it needs to grow.

I keep being told I am one of a few to have survived like this, I say I know quite a few, but out of the 20 or so I know, how many others don't we know how haven't made it past 2 years?  Not everyone blogs and no specialist will ever tell you.

On that cheery note, better get in the shower and off to earn my keep!

Saturday, 3 December 2011

Meso Panic Attack

I've had a long week at work, both with the housing and my regular work.  Although I seem to meet myself coming backwards these days.  Yesterday was no exception but I came home at 4pm to find hubby in the kitchen.  I thought it would be great if we messed on a little and did a bit of baking inbetween getting dinner on.  We tried those sugar baskets, burnt the first lot!  Then we made raspberry souffle's, while our Maltese lasagna cooked.

On celebrating a long week we opened a bottle of bubbly too.  Nothing on TV so we watched some taped bits and ended up (believe this or not) till 11.45 watching TV.  I was overtired by the time I climbed the stairs to bed and was out like a light.

At 12.15 I woke up too hot, I nipped to the loo and got back into bed, At 12.50 I awoke again from a dream where I was walking and couldn't breath to find I was struggling to breath, from there it went downhill.  I tried to get myself settled, everytime I laid down my heart was booming in my rib cage and I could feel anxiety stepping in.  Hubby was quietly sleeping at my side. 

The wind was howling outside as well and I remembered the night my poor mam sat on the toilet with her prolapsed bowl and then guilt settled in because she didn't ring me and how terrible it must have been for her in the winter months freezing in the bathroom.  By 2.30 still awake and I was clammy, either too hot or too cold and still I couldn't settle.  Lying down I could hear my heart pounding and couldn't seem to breathe, sitting up I was freezing and tired.  I was stressed and ended up talking out loud and hubby woke up.  Down stairs he went for bp machine and the trusted temp taker.  Temp was at 34.5, back in the fight or flight syndrome, bp was a healthy 127 over 77 and heart beat 77.   Downstairs again for a diazapam and an anti sickness tablet.  He sat and talked with me until I finally went to sleep while he stayed awake another hour to watch over me.

I finally surfaced at 10am, my body aching from being in bed, my rib cage like a solid tin box but temp back up to 36.3.  I am relieved its daylight and hopefully it will be a long time before this event happens again.  Maybe I am run down, I have the light sniffles, maybe too much sugar (I ate 2 souffle's!), who knows what brings them on.  I only know that I have had 2 in a short period of time.

No fresh air today either, the wind is strong, and although I feel wiped out the need to have had a good walk would have done me the world of good, can only hope the wind settles over the next few hours.

I also want to pass on some good news too, Lyn has had another stable scan result - good news lifts us all.