Before I knew the name Mesothelioma, 8 years ago today I was starting with my usual bad neck, now having a walk in clinic at James Cook I knew when things got worse I could just walk in and see a doctor. As my birthday looms it was that fateful day that he told me I would require to see the surgeon. Yes I spent my 44th birthday sat in a waiting room in James Cook. The XRay was the same as the previous month, fluid filled the pleura space and he told me I would be seeing the surgeon. I had it drained off again that day, what a lovely birthday present!
At that time I was relieved that at last something would stop the endo or find what else was making me so ill, this had been going on now for 4 long years, and over that last 7 months I was never without pain, my three monthly cycles had stopped.
I remember seeing the surgeon on the 29th of July, Dr Owens, a very warm and enthusiastic man but he was direct. He told me opening up the chest cavity was dangerous and would probably cause me more pain than what I was in! I thought how can that be you'll cure what ever it is that is going on in there. After all we were all sure it was endo. So much has happened to my poor body since then. The pain from the first surgery was bad, especially when he did a near decortication then, followed by another operation a couple of weeks later. I still remember that first V.A.T, I was shocked when I was told I had spent nearly 5 hours in surgery, hubby was grey when I first saw him, not that I remembered much.
You would have thought I would know better after that to then go through the next surgery in 09 to remove the whole thing. Shame that Dr Owens hadn't done it then but who's to say I would still be here now.
I have deferred my CT Scan till August, and hopefully only get the results in September after we get back from the cruise. I wish there was something I could take that wasn't toxic to kill this nasty meso, the thought of what I went through in 05 and 07 doesn't make my body\mind feel any better. I know that there are a few people going through chemo now without any major problems and I truly wish I was one of them. Seems to me those who have no bad side effects seem to do the best on remission, and I can name quite a few.
Denise is managing to carry out her normal daily life, a friend abroad is doing the same, Chris who went through chemo with me in 05 is still like an ox. Maybe with being a few years older this time the chemo might have a different effect.
I have read that SS1P is doing so well in the States, I wonder if that trial would start up here? It doesn't sound as toxin as chemo. Why can't we just take a pill and be ok, like migraine or blood pressure.
I am terrified of dying, after spending a week enjoying the sun and relaxation it made me realise that life isn't just work, but even if it is it is a life I really do enjoy. I can't imagine not waking up, but even worse I fear the end. I know I have a long way to go yet but I am scared, I guess I wouldn't be normal if I wasn't frightened of dying.
A friend in Oz is so low and being so far away it is hard to help, her partner has the meso. It is true us women are better fighters and don't give up so easily. Either men give in or won't talk about it, have you noticed? They feel they aren't being strong if they do open up or bottle it up and keep everyone at arms length. I feel sorry for wife\partner caring for a man with meso. I know men don't really want to talk about it, I find it hard having a conversation with my own husband, he doesn't want to talk or face the future. I'll say are you ok if I answer no he has that look and then doesn't respond. Maybe that's why I do this blog, it gives me a voice to air my thoughts and babbler on about everything and anything.
Lexi has gone to the vets so I had better sneak into the shower and yes, get ready for work. Oh the joys of life!