Reading Good News

I am so elated for the news of Steve's treatment (Doing Something Positive) a shrinkage which will also bring about remission.  It is always wonderful to find out someone is doing well and that we can survive with this rotten, no terrible cancer.

As I am back to pre-chemo aches I am obviously so annoyed that my system was unable to deal with the 3rd line of carbo and premetrexed (Alimta) and I know the 1.5 measure I got did do something, but would it have lasted or would the results of the 07/08 still occurred, only 4 months remission?  I have to hope the meso hasn't reacted badly and decides to start sprinting in growth rather than taking a slow walk.

 

We don't realise how lucky we are when we lose a couple of pains but we remember them the minute they come back.  This is now a week since the heart region one has returned and stayed (infact it could be longer), and it is getting me slightly down.  I guess because it's a reminder that I didn't succeed in remission, although I do believe for those short 6 weeks I did get some changes, the fluid obviously drained away somewhere. 

We are still dealing with the unknown in many respects and lets face it many of our oncologists aren't really that interested in the in's and out's of mesothelioma because they will come across very few of us.  There aren't many with a passion for this terrible cancer.

My blog has been a journey of the pain and suffering that I have gone through, the highs of remission, the lows of facing death.  I have written it as honest as I can and I probably will continue in this manner through 2013.  It's my record to remind me of what I have achieved as well as what I have endured and to help me look back as life has past me by.  Hopefully for those who have followed the blog it has helped you understand that we can live past the 1 year as previously quoted and that although we may be with pain we still have life.   I have tried to enjoy each and every day, sometimes worrying that I don't do enough to make the most of life, but I have come to realise that even without a death sentence many people don't do anything special, life is normal.  We get up, go to work, come home, watch tv and go to bed.  Our changes are weekends and holidays, I am living a normal life.  I have vowed to do more this year, mainly because I am worried that it could be my last best year unless some miracle is around the corner.

Once the dust has settled and my normal life resumes (work etc) I will contact Hull and see about the ADAM's trial, but again should I hold back a bit or do it sooner?  These are the only decisions that drive us crazy living with meso.  Hubby asked why do I want to jump on the wagon again so soon, why not put meso to the back of my thoughts?  He thinks that prior to my scan results of last September I was in a happy place with meso, how wrong was he, he never reads my blog and until September we never really talked about meso. 

Which reminds me no date for the scan that was promised, shame they hadn't done it when he first said, after number two as it would have shown something good (in my mind anyway).  By the time the scan is scheduled I guess I will be back where I started pre chemo.

So today is my last on holiday, yesterday we took the decorations down, today I am going to visit a friend and hopefully get my draft book back all proof read so I can make the alterations and get the thing finally published.  I hope I find the time to write another fiction\fantasy book but I go through phases and I think my writing phase, like my house designing, has gone on the back burner.  My next project is to sort out a book of our lives for hubby, but will need to do that in secret! 

 

To brighten the day Woody called this morning to find some food, I love my desk by the window as I get to watch the birds, wish he would be brave to come up to the window sill thought .. maybe one day he will.

 

 

Mind or Matter

Yesterday I had hubby come into work to start learning some of the bits and pieces of my job, I have hoped he will eventually do it when I am gone, more so because it is a family business, even if it is large, and who else would I trust with inside knowledge.  Even being a sister it took years to be truly trusted with some of the things I get involved in, so you can understand how hard it is to pass some of the work on.

 

I was pulling heavy laden files from behind me, lifting them from one side of my workspace to another, straining to reach bits, sharing your desk space is quite hard.  I ended up working till 6 as well, although he had long gone, but I had lost valuable working time explaining just one job.  When I came home I already could feel the heaviness starting in my centre chest, I knew it was my heart, these pains have been back for quite a while but not like yesterday.  By the time dinner was over the pain was spreading to my shoulders and neck.  He went into the other room to watch the football and I went into the lounge, my head was starting to throb and moving was once again becoming difficult.

 

I laid on the sofa, wondering whether to ring an ambulance or not.  I knew the best place would have been a hospital (I was worried) but then I would just be left to do the same, lie down and worry.  At 9.30 hubby came through to see my prone figure on the sofa, blanket over and in pain.  He did what he knows best and brought some morphine through, I started with a 20 mm, knowing that too much causes a different type of headache.  I had looked up angina on the ipad and thought hum could be having this, I haven't had pain radiating out to my neck and shoulders like this, only the heavy throbbing pain in my heart.  The 20 didn't do much so I took so more, he helped me up the stairs, and got me into bed.

 

I awoke at 12.30, the pain was easing in my shoulders but the meso sweats were bad, I was drenched, problem was I couldn't get up, any movement made my heart hurt more.  I moved over towards his side (I thank God we bought a super King!) and went back to sleep.  I honestly didn't expect to wake up this morning but I have.  The pain in my chest as bad and still some in my shoulders, my head hurts.  I took my oxygen level its 96% although BP is 110 \ 78.  I don't know whether its from straining yesterday or from starting the Milk Thistle capsules or just the meso being ugly.  My 3rd boob is extremely tender too so that could be adding pressure - I hate this bloody cancer.

 

I have gone through the should I do chemo or trial so many times in my head, this morning I am thinking maybe try something I know that might work, but the verdict is still out on whether it will.  I don't think its the fluid causing the pain, its the weight of the meso hanging from my pericardium - that's what my body is telling me.  Funny we do get to know our bodies inside out.

 

Have managed to arrange an appointment with the Doc, not that he will be able to do much, but at least he can listen to my heart pump.  I really hate hospitals and will do anything not to have to go in one.  Not even sure if a hospital could even help!

 

I feel better for getting this out, hopefully the pains will start to ease as the day wears on.