Sunday, 4 March 2012

Waiting Game

In our hearts we know that things have changed, those pains have gotten a little worse, the breathlessness more noticeable when making the bed or climbing the stairs and in  may case chasing the dogs around the garden.  I have been waking with a really heavy pain in my chest, I think it is around the heart and I dare not think to hard about it.  I am blaming the smoking, which I know will not help and probably why my surgeon has never responded to my emails.  Smoking will irritate the lung and cause thickening of the arteries but I am weak  willed returning to nicotine, and if this is what is causing this, it is my own stupid fault.  But I fear it isn't the smoking but the meso and who can I talk to about it?  In my mind's eye on a morning as I wake I find myself trying to file away parts of my body into drawers and lock them .. strange eh?

I didn't get the phone call on Friday at 6.15 so either the scan hasn't been read or my Doc is on holiday.  We don't think we are waiting to hear the results but both hubby and I have been acting weird, not mentioning it but both trying not to think about what the report will say.

I have noticed too that my eye sight has dropped, normally another sign that my body is off trying to fight a battle it cannot win, the only good thing I can say is that I have held my weight and if anything getting a little fatter.  Maybe my addiction to fruit gums isn't helping there but its weight on and no matter whatever it has been manufactured from its on my bones.

I am behind with emails so if I haven't been in touch recently its because I have been overworking and now I am exhausted.  I said to hubby I promise I will take a day away from the computer and not turn it on but the weather isn't great and being stuck in the house what else is there to do but work.  This weekend instead of finishing some sales literature I have been messing around with house designs for the next new site.  Don't know why I am bothering because part of me doesn't believe it will ever get off the ground, or maybe not in my lifetime anyway. 

I read in meso uk that keyhole pleurectomy is what they are doing now.  I wish that had been  the case for my last surgery instead of the great big cut from the top of my shoulder to the bottom of my diaphragm.  This will make healing much better and I would imagine the whole procedure a lot less painful.  I guess it will be similar to what Dr Owens did back in 04 apart from he didn't remove all the lining just put lots of holes in it.  I hope this new style of surgery does take off, especially for those with a small amount.  I wonder if I could have put back surgery till now but then we never know what and when to do any treatment.  Would I have been alive and strong enough if I hadn't done 09.

I think this is probably the way H went, his recovery has been simply marvellous, although now after surgery comes the radiotherapy followed by chemo.  What a nightmare we put ourselves through for the sake of living.

I just can't imagine dying, is it the next step to something different or are we dead. I seem to think about this more and more and its always in the shower. I don't discuss it, I never really have, occasionally I joke about it and once I did have a conversation with the macmillan nurse who said I should talk to a counsellor about it. But really would a counsellor be able to tell me if we are dead or do we go somewhere else?

Back to the waiting game I hope and pray it is stable, I like everyone else involved with  mesothelima hope that a cure or stabiliser is found soon.  I wonder if I start some treatment will these new annoyances disappear or will they stay and be joined by new and much worse ones.  I honestly don't know where to turn next.  Once I have the scan I can contact Harefield Hospital and see what they have on offer and I have a trial to hear about at the Bobby Robson Clinic this week.  If I am stable I will opt out, if I'm not then I guess I will have to put my thoughts together and make some decisions.

Chin up everyone, tomorrows another day.

1 comment:

amanda said...

hoping good news for the scan, it's strange the way our brain deals with things. I too put lots of things in boxes and put them away for later.

There is lots going on with tests , so many people in so many countries are working on this , something must come through soon, so keep hanging on in there