Testing times

It is nearly a week since mam died and I have no idea where the time has gone.  I keep thinking I have ages to go before my trip across the pond so have put all thoughts of organisation to the back of my mind, but then this evening I realised its a week on Saturday when we fly.

I am starting to get nervous, John Edwards isn't sure how Fereidoun will get in to cryo, I can only hope the probes will go and knock down the tumours like skittles in a bowling alley.  Paul Taylor from Manchester rang to say that his department think I have a very slow growing meso at the moment, but also pointed out that I have a nodule on the right lung, unchanged, but nevertheless one there.  I have noticed this previously and believe him when he says it hasn't changed in shape or size.  It's bad enough having it in the left without the right joining in!  Itis good to get lots of opinions on the state of ones lungs, some pick up things others haven't. 

The only problem is the mesothelioma itself, hopefully it remains slow but then it can change, or it can stop.  In the states they go straight in and use chemo to try and keep it back, do we hold back in England just in case it doesn't speed up, or hold back because there is no other chemo's out there?

Why is life full of decisions, I can understand why some patients want to be treatment led but I can also understand why some, like me, want to make their own decisions.  If it was a water infection then I would be treatment led because water infections all seem to work the same, meso doesn't seem to follow the same pattern in everyone until it takes control and even then it can be different in each case.

The pain in my heart is still there and feeling heavier, I am hoping this is the one that will really get blasted and go, maybe then I will relax a little.  I have noticed recently how my hip bones are becoming more pronounced and my left one gives me strange sensations if I catch it by accident.  I need some weight on this area badly.

British Lung Foundation have been campaigning recently about COPD, my mam had this.  I remember some 20 years ago being at hospital with her when the Doc was reviewing her xray and he said she had calcium lumps in her lung.  I have wondered since her death on Friday whether to ask the crononer to investigate, who knows she may too have had mesothelioma, yet the thought of postponing her funeral isn't in me.  As one of my brother's said, what would be the point, there is nothing that could be done if she did have meso.  What is COPD?  most elderly people seem to suffer from this once they get to 60 suddenly they have COPD and it was classed as normal for people of that age, but why - it's not a normal condition, we aren't born with it so why does it happen?

With mam dying I must admit I haven't had time to put my own fears in place, I guess once I am on the plane then I will start to panic about the days ahead.

Keep the spirits high

Just a Rant

It seems strange, I looked at a photo the other day of my back and side when I came out of the hospital with my tube stuck just under my left breast. Time has passed so fast since that day. The first morning at home I was so pained and couldn't get comfortable and I had no energy. I remember not wanting to have to have a shower and I think I didn't do it till around noon. Then had to sleep as it had taken so much out of me. Yet this morning I was pottering around after my shower, hubby had gone for an early practice at the golf driving range (peace and quiet) and I remembered how I was unable to stand in the shower and wash without help. How leaning against the shower why he dried my feet, never did do between my toes properly! It amazes me how our bodies can get over so much so quick, obviously pain lingers on but the mental strength to get through kicks in.

People on chemo have to do the same, find that inner strength to go through the next dose and here is where I come to my rant.

Why can't our oncologists do chemo embolisation in this country, we have the technology and skill for stents to the heart so why can't we do this procedure with the chemo here. It would surely cost less than the way it is dealt with now, as the after effects are much less, hence costing the NHS less on drugs to get us through the next 6 months.

The government just can't balance its books. Shame they aren't ran by the ordinary shop keeper or small business man who makes every penny count. I'm on about COE's as they leave uni and never have to work their way up the ladder, so they don't see how to make money and save it from being wasted. Lets face it the boss at the top of the NHS probably isn't from a struggling background who knows how to watch the pennies. Money probably fell into their pockets and never ran dry.

Rant over I think, I just get so worked up that money is wasted yet where mesothelioma is concerned, and lots of other cancers, we have no money for treatments and research. We also have to deal with ego's in the NHS, if it doesn't mean acknowledgement for most of them they aren't interested or down play results.

Oh forgot finally have my appointment for the CT Scan, next Friday. Hubby is already in the worrying mood, I can see his mind racing over risks of catching anything before Friday and missing the appointment, then the worry of what the CT will say. He said the other day that I don't look for risks, I told him if you keep expecting them you will always find problems.

Well back to Big Brother to watch a group of people who hope to push themselves forward for God knows what.

Enjoyed my rant need some ideas how to get treatments aboard to come here. If I was diagnosed now for the first time I would go straight to John Edwards and ask for the lining to be removed, then start to think about what next. Sorry seems like I haven't finished for the night but I must go its nearly 10 and I have to have lots of beauty sleep, not that I get lots for all these strange dreams I have recently started having insomnia gone, dreams took over!

Tomorrow I also say goodbye to my fantastic pain management Doctor, Doc Bernie retires so I'm dropping off a decent bottle of single malt as a thank you for all the advice he has given over the last 18 months. I honestly thought I would be dead and gone before he retired, so nice to be wrong in the best possible way.

Keep fighting