Minggu, 22 September 2013

Saturday Shopping - Trying to be normal

I was so pleased to go out with the mutts and I think they were pleased to spend some time over the woods with me.  Lexi was, as every time I stopped she would come in and out of my legs.


The weather was warm but I did find it hard going and had to take a puff of my ventolin, only problem was something else went down my throat, probably a little bit of lint and I ended up trying to cough it up.  That took some effort, leaving me a little out of puff for the rest of the walk.

I had decided I was going into Darlington come what may as I need some clothes.  I have only 5 tops that I can wear over leggings, in fact I think I only have 6 pairs of leggings.  So after a small bite of lunch we went off to town.

We parked as close to Marks and; Spencers as we could and I was pleased at the choices of long tops they had, so 2 light sweaters, 1 long shirt and a knee length dress I came away feeling quite pleased with my purchases.  We popped into Mothercare expecting to find maternity wear but nothing.  So along the high street we went, nothing in BandH, nothing in Next, River Island etc.  I had to get one of those false bridges for my engagement ring as all my rings are slipping off my fingers so we called at a jewellers then headed up towards Taylors I had planned on going along Skinnergate to Binns but my stomach was aching.  The weight of it hanging out over the front was becoming unbearable, so we cut down Posthouse Wynd and back to the car.  I was in a lot of pain by the time we reached the car and couldn't decide whether I needed morphine, but I held off and nursed my aching tummy instead.
 
When we got back home the sun was shining in our garden so Gary thought it would be nice to sit up the top and sort the potatoes out he dug up last week.

Cleaning the spuds!
It was nice until I sat out and the grey clouds came but I did help clean a few, at least we have fresh veg that have had no pesticides sprayed on them.

Our own turnips!
 
I am counting the days to Tuesday when I will see Prof Fennell about treatment, I pray to God he will give me something that will not only treat the mesothelioma in my stomach but hold it back from growing.  Then do I get a drain or not?  If it works I won't need one but then what if it doesn't work.  The water tablets I am taking are stripping everything from my body apart from the stomach.  I need to finish taking these asap, the diclofenac are probably causing the night sweats but then again are they, could this be because the cancer has advanced so much.
 
Steve Cook has suffered fluid in his pericardium. I thought back to those years when I used to under go the same problem and thought my heart didn't have any room to beat.  I didn't realise how serious this could get and I guess I was lucky not to die.  Now I am getting those pains back again and I have been told the fluid is once again accumulating around the pericardium.  I have a false heart sac which won't stretch like the pericardium sac does, anything over a litre could cause serious problems.  A friend in the USA told me her hubby also had a drained fitted to release the fluid into the chest cavity, maybe this is something else I will need to think about in the future.
 
I have never been as scared as I am now.  In 08 when I knew thing were bad, sorry near end of life, there was always the option of surgery and thank God I was given that opportunity.  Now I haven't got that fall back, just the hope some form of chemo will buy me more time and hold back this terrible cancer.
 
I am still only 53, I know now that there have been deaths younger than I with this cancer but still 53 isn't old.  My life was cut short at 40 when all of this started and although I have tried to live a full life, work, holiday, husband, dogs - not in any particular order - I have had to go through terrible pain, chemo's, surgery and recoveries.  Even holding it back could only give me 4 months to a year then what?  Miracles are required for not just me but thousands of us who are diagnosed with Mesothelioma.  We need resources and research to find something to turn meso from terminal to chronic.  I could live with chronic, all of us could.
 
This is the website who Dr D Breen belongs too:  http://www.ablationforcancer.co.uk/  I am still debating whether I should send my scan and see if he could rid the right lung of the 3 tumours I know about, maybe killing these would help stop the right from getting worse.  But after our emailing I'm not sure he will be nice, although what's saving ones life got to do with worrying about someone else's attitude.
 
I also read this regarding the pericardium: http://en.wikipedia.org/wiki/Pericardial_window  it didn't make me feel that good I can tell you.
 
I had a phone call yesterday from Chris S.  He was diagnosed with me back in 04 but sometimes I don't know why I talk to him.  I sent him off to see Prof Steele back in Oct 12 because his onco told him he couldn't do anything else.  He is lucky in some respects as his tumour has remained on his aorta and although over the years has grown it hasn't spread.  Over the years I have listened to him but never once has he asked how I am doing.  He tutted me going to the USA for treatment, yet this could have worked for him back in 08.  I mentioned this David Breen to him because his tumour has grown another 1cm - I don't know why I bothered because he then treated me like an imbecile explaining what the aorta is, I know what it is, I had a tumour wrapped round my own in 08, which Dr Abtin cryoablated!  He is lucky, his meso wasn't diagnosed until he was in  his middle 60's, I know that is still too young to die but he has had 20 years extra on living a full life than I have. 

So this morning I am not feeling that good, after having the sweats and my stomach is aching, my chest region is heavy and aching, but I do want to take the dogs out with hubby but feel at the same time I want to waste another day of my precious life being a couch potato.  I need some fight putting back in to my tanks, they are running low at the moment.

Another thing that annoys me is I had a good memory and could read something and retain the information.  If someone posted anything on a trial or I found something by my own research I could remember it.  A lady rang me the other day looking for advice and I couldn't remember a thing to tell her, how bad is that.  I was once reasonably good at being able to help people, now I just tell them to come onto facebook and look for the groups on mesothelioma.  I am finding I am relying on my friends to keep reminding me of treatments.  On this I would mention Graham, because he keeps having to retell me stuff.

As I am writing this, once again the perspiration is starting to build up, my forehead is getting quite clammy again.  I remember having bad sweats back from January 04 until I had surgery in the August when Dr Owens removed all the tumours.  My cancer had changed and remained constant in the January onwards no more growing spurts, just full on growth.  I just hope this isn't what is happening now.  On that pleasant, not, note I will close this blog for the day. 

I hope the sun stays out where you are and that whatever treatment you are having is working, please just add me to your prayers that things will go ok Tuesday.  Just hope my belly isn't too big to get into the passenger seat - it definitely won't fit in the drivers!

 

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