Not understanding Meso at all

Friday I went to see Dr Hughes to discuss the Scan and update him on whether I had spoken to the Trial team.  I had sent him the emailed scan results, which in terms of reporting were short and not so sweet.  I had also asked about staging as in the UK we really don't do it that much.

Before surgery they had hesitated a guess at T3N, I understand it if had been T3M then surgery would have been out of the question.  I also discovered on Friday that the meso seems to be growing inside the lung, namely what they called intraparenchymal nodules.  I didn't know this could happen but this could explain the breathlessness that I am now noticing more and more, together with the heavy weight in my chest. 

The weather today was like 2011's summer days, we had our family walk in the fields both of us took our camera's, hubby looking out for birds and me snapping away at the dogs.  I just missed a Deer as it ran through the wood but we were more worried that the dogs saw it and gave chase.

It was wonderful to come back, pull out the sun loungers and spend an afternoon in the garden reading and relaxing.  My how the sun makes you feel good.

I am starting to worry that I won't be around next year and now with the news of nodules inside the lung it has really kept me awake at night.  Do they grow faster inside, I doubt they can be removed and it is the first time I have ever seen them mentioned on a scan.  I hope I will get some more information on this when I hear back from Dr Owens.

I am also due to see the trial nurse on Thursday, for some reason I thought that trials were just tablets and not chemotherapy, something hubby said yesterday about a trial taking place with cistplatin and I thought oh no not chemo.  I guess I will have to wait and see.

I am also beating myself up for smoking again and now with this result I feel it is my fault that the meso is inside the lung.  No one will ever be able to say for sure yes or no and I know that smoking is a killer.  Another choice I made and in this case a terrible one. 

I heard from Mrs Bradshaw this week, she lost her husband a year ago and is still promoting mesothelioma.  It is hard for our partners to continue with out us but to carry on working with those affected with this disease must bring the loss home everyday.  Today is 1 year since I lost my mam and I still miss her, how anyone can cope with the loss of a soul mate I could not even contemplate.

Time to wrap this blog up for the night, hopefully I will sleep better to night and get some decent much needed sleep. 

Mesothelioma Thoughts

My CT Scan has gone astray en-route to UCLA, somehow it has managed to get lost in Belgium - don't even ask.  All I seem to have done over the last couple of years is complain about the pain instead of trying to take a leaf out of Steve and Linda's book -do something positive!  My positive is whether I managed to get to work all week and looking forward to waking up one morning feeling normal.  Guess that dream will never happen. 

I remember the first year I was diagnosed and after going through surgery, radiotherapy and chemo we spent weeks travelling, I think it was nearly one week in eight on holiday.  Then you settle into thinking you have forever then it comes back.  Another round of chemo that didn't work, a couple of cryo's that killed those particular growths then surgery.  Surgery, in my mind, would hold back the disease for years and years.  I had been put off early on from surgery because many died before leaving the hospital, others seem to have return within 18 months and invariably it always went to the abdomen.  But I thought I had beaten it, that I like several others would have years ahead.  It could be slow growing, it could take years to get to where it was back in 04 or even 07 but then again it could take a very short time.  Maybe if tomotherapy had been available all the small microscope cells would have died at that time and I would still be living cancer free.   But my hubby's favourite saying is "it's done you can't do anything about it", so guess I can't.  What would I do if I could turn back the clock?  I guess I couldn't change when I got meso as how would I know when it occurred, which Sunday shouldn't I have washed my dad's overall's or indeed my brothers overalls? 

What I need to do now is do Something Positive - I am sure that fighting spirit will emerge, but oh how you get tired of fighting, but we aren't just fighting the disease we are also fighting politics which takes a lot of energy that we just don't have the energy for.  I would like some one to wrap me up in a soft blanket and tell me this is what we are going to do and you will be better.   A Pipe dream I know, how do other people deal with cancer, am I just lost at the moment?  - Indeed how did I deal with it for all those years. 

I have pulled an image off of where a couple of growths are - how can these little nodules do so much damage.

These are two starting, further down are another four and then this is followed by thickening. This is why I hope that Dr Abtin can cryo-ablate these two and the others further down.  Or maybe this new fancy machine in Manchester can blast them so they can't release anymore cells.  I remember once being told that 1 cm can hold 1 billion cancer cells, they open and spill out allowing another 1cm to grow etc and etc.  Lets hope that one day someone can find something that stops that 1 billion cells flourishing.  In the meantime, is it the cancer that kills or is it back to the toxins.  This has always been my question from way back when, we can live without the lung why can't we work at killing the poisonous toxins that are spilled out into our blood streams and damage our organs? 

On that note I will close this blog for the night and think about Something Positive to Do tomorrow.

God Bless you all and keeping fighting, don't become complacent like I did, always work on the thought that tomorrow may never happen, this doesn't mean go and be reckless, but say what you mean and mean what you say, treat others how you wanted to be treated yourself.  Smile and the world smiles with you and if you can spare a penny, give it away.