Sunday, 15 May 2011

Glitter Ball

Having taken weeks to get the new tablets in my system (still only on 2 a day ... just can't seem to pluck up the courage for the 3rd one) I know that the pain relief seems to outweigh the side effects but could it also be that I am recovering normally?

I don't feel myself, could bite someones head off for no reason so am constantly on my guard not to get slightly miffed with anyone... thing is I'm finding you don't need to be miffed to feel like biting anyone's head off!  Paradox in itself that sentence, so I daren't take no 3, my God I could become a time bomb!

So what's happened over the last few weeks, have been full on  at work, that's once I've taken an hour and a half on a morning to feel like going, then its in the deep end, but concentration is failing badly ..could be the tablets.... normally I would have between 3 and 4 jobs going at once on my desk and computer I seem to find it hard to deal with one, but shouldn't complain as I still work and it nearly meets what normality is!

For the first time in months I had two events on for one day  (yesterday), one the Point to Point for South Durham (sponsor table etc) then Mick Knighton's Mesothelioma Glitter Ball.  I didn't dare sit still from coming in from the Point to Point to getting picked up at 7 by Lorraine for the Ball.  The Assemble Rooms at Newcastle were done out with such glamour and the place was heaving.  I think now there are more sponsors and guests than ever before and probably less of us cancer lot, but that's what brings the money in and helps the charity raise funds.

Chris announced that the charity has reached £1,015,000 since starting in back in 02, that for 2 women and the amount of awareness that has come to the forefront is amazing.  Chris has probably done more for mesothelioma than any other person or organisation.  The good thing with the MKMRF is the money all goes to research, no fancy offices or cars, no high expense bills - all to the cause.  Hats off to Chris and Ann for achieving the goals they aimed to fulfill.

Went to see Andy Hughes (Oncologist) Monday, will be doing nothing until my scan in June.  Decisions will then have to be made.  He actually was on about trials and I left him all the material I have recently gathered for him to read through.  He said he would facilitate any introductions I may need should I go that way.  I said I really needed someone to bounce ideas around with.  The problem is am I 3rd line or 1st line where treatment is concerned. One thing that we both agreed on was that I could never take Alimta again, it was the choice of do you die from the Alimta or Meso and in my case it would be the Alimta!  Have also been back in touch with Dr Gilliams at the London Clinic and should I need to I can still have thermal ablation on any singular tumours that are under 3cm but over .5.  So if one of my 15 pin heads decides to grow individually then bye bye with ablation.   At least its in England, no 11 plus hour flights and hotels far away, its one night in hospital as its under a general. 

The headaches seemed to have cleared again since the cryo - so hopefully the cancer has retaliated for a while, although my kidney area has bad patches of pain that last for 2 hours at a time.  Have also been having sharp hot stabbing pains in my shoulder blade, especially near my scar and left breast ... hope its nothing but you never know.  One really good thing I can't feel that pea in my back anymore when I lie flat and my breast is still not causing any pain when it touches my rib .. long my that pain stay gone for good.

Met up with Chris Scott at the Ball, I was diagnosed a week before him.  He was looking the best I have seen him in years.  Since 2004 he has had 2 lots of chemo cycles, suffers no pain at all, same as Colin no pain.  I am still wondering what extent of meso they had on diagnosis.  When I think back to the 2 curtains hanging off my pleura and the 20 plus smaller bits Andy Owens removed I guess I am lucky to still be here.  It seems a lot more people are being diagnosed a lot earlier (a fine thickening and maybe a nodule or two sticking out). 

My Oncologist said I seem to have done treatments in the totally wrong order.  Maybe I should have had chemo straight after surgery again - but would it have mattered?  That's back to the problem with mesothelioma - it doesn't do the same in anyone person and no one can tell you which way you should go.  Yes we have the standard on diagnosis - either surgery or chemo.  Most go for chemo then its wait and see, what else is there we can do.  Surgery is a large undertaking if you have only a fine thickening, but then it hasn't got to grips with the lung so to speak so maybe surgery should come first then chemo second.  In a way that is probably how mine went as Andy Owens just about stripped my pleura the first operation in 2004.

After having such a busy day yesterday I have spent all day lazing around watching tv.  I haven't had much energy and any energy has been zapped  trying to brush our Bear.  I feel like I have wasted a day off, but then what are days off for but to sit around and do nothing.

I have missed a few weeks but my moods swings have become apparent even to me and its best not to write when feeling irritable. Sometimes this cancer leaves you feeling its you against the medical profession and they don't listen, or its you against family and friends and they keep pushing and pushing with ways to cure you, or some times you just feel like putting your head in the sand and ignoring the whole business.  Work has kept me occupied and more so these last few weeks because I really want to crawl into a hole and forget mesothelioma.  The wish to wake up without hurting or feeling yak is so deep now that I hate going to bed because I know in the morning its bad, but then the morning has gone and your occupied with other things.  Frustration at not being able to do stuff bugs me as well.  Why should going out be so tiring, why can't I be bothered to do anything when I finish work.  Come to 4pm and I want to close my eyes, but I won't let myself do it.  For no reason at all one morning last week I felt like going into my tablet cupboard and throwing them all in the bin - I know that's the Gaberpentin causing those irrational thoughts - but that's how I felt.

Sunday Roast is in so guess I had better get myself in the kitchen, poor hubby has been the sole chef for the last 6 months, I just can't be chewed with it!  I have also managed to hold my weight at 8st 10, so I finally went out and bought some new jeans - 4 pairs to be exact - watch  me start piling the weight on so they don't fit!  That was last Saturday and I was worn out last Sunday too!

Enjoy your dinners and no doubt I will write a load of dribble next week

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