Sunday, 21 December 2008
Saturday, 13 December 2008
We feed the birds, usually have a few trays of seed on the kitchen windowsill, watching them all fly in and peck is amazing. So today we mixed some fat and seed together and set them in those coconut shells. Last year the green finches would tap on the window when the seed was all gone. The birds are still nervous as when you open the window they take flight and wait until 10 minutes later before returning to peck at the newly filled trays.
One last thing all those with meso or carers of sufferers I hope you have filled in the questionnaire on the British Lung Foundation website .. shame if you haven't.
Hope your shopping is going better than mine, Christmas Tree up tomorrow with a glass of baileys and Christmas Carol's in the background, I'm sure I'll be in the festive spirit by bedtime, so if your putting your decorations up tomorrow lets have a toast "To another year and many more to come"
Tuesday, 9 December 2008
Thursday, 4 December 2008
No wonder so many patients get stressed out, information is never passed around, the only operation around in 2004 was the full monty and the percentage on that was 1 in every 2 died on the table. No-one in their right mind would take those odds, even me.
Apparently there is a meeting happening regarding lack of information given on treatments throughout the UK lets hope that some form of standards is given and also away that oncologists can be updated about other options. At the end of the day oncologists mainly deal with the drug side only, this should be changed so they can investigate all types of treatment and like a supervisor, everyone should report to the oncologist who would still be the main point of contact for the patient.
Why is it that we never find out about what can and can't be done if you are in a different region. As I said, when I was diagnosed I had a set of curtains hanging off the lung and small spots on the chest wall. Even if the pleura had been removed in 2007 I would have been in a better position and the cryo could have removed anything that the surgeon was unable to pull away. Now I'm in the situtation that if I go through surgery the Doc isn't certain how peeling will affect the tumours already cryo-ablated. Always a chancer I would take the risk and see what happened, but the thought of Intensive care, large cut and nerve damage, loads of those awful tubes sticking out of my body to drain air and blood isn't what I envisaged for the start of the year.
Before any decision can be made by either party I need a PET Scan. Well we all know how long they take to get in for.
I asked about length of survival after the operation and he said they hadn't ran a trial on it, I don't believe in trial info as its not really right. If you have 10 75 year olds go through it and 5 die within 6 months while the remainder die within 1 year and 10 60 year olds who die in 2 years the average is 65 years and 12 months. Why can't they publish 60 - 70 extra survival 1 year, 50 - 60 extra survival 5 years etc. Not 100 on chemo against 100 on surgery and mixed ages, it tells us nothing.
I'm still under 50 and healthy but he couldn't give an answer, you have to take in the fact of how much meso is left, rate of growth etc. and as us sufferers know, it can change overnight from remission to full all out warfare on our body.
Guess this is for me to ponder over for the next few weeks but any comments to guide me one way or the other would be appreciated.
My poor hubby has just dressed up like the mitchlin man again to take the dogs out, they are loving rolling around. I think the snow is starting to melt but darkness has fallen and its hard to see what's happening out there. I had some early winter presents this morning, a padded jacket suitable for the highlands in Scotland, thick antartic socks together with mountaineering gloves, all these to keep me warm.