Thursday, 4 December 2008

Information overload

What an amazing morning, looking out over the fields at all the snow. Obviously the dogs simply love the snow and hubby made a wonderful snowman for us all to enjoy. It's hard work keeping the dogs inside as you can see they are both wanting there toy's rather than sit and have a photo taken with me.

I had decided to work from home today last night as yesterday, Wednesday, was a nightmare of a day. I had an appointment in Sheffield Northern Hospital to see the surgeon and due to the weather we decided on the train. My appointment was 2pm so we went for the 10.10 from Darlo, only it didn't come in till 11.45. So giving ourselves and extra hour and a half turned out we were 15 minutes late. Being the polite person I am I rang the hospital and told them we were running late, so if someone was there early they could jump the que. As it turned out we didn't actually get to see the Doc until 3.50 and we needed to leave at 4.15 for the last train out of Sheffield to Darlington. This was another blunder, the hospital kindly booked us a taxi for 4.15 but it didn't show. By 4.40 hubby was standing in the middle of the road and managed to flag a taxi down. It was rush hour in Sheffield and the road, only 3.5 miles to the station, was backed up with traffic. I felt like crying, I was cold, tired, hungry and by then totally sick to my stomach from our discussion.

Hubby had ate nothing all day and had a bad headache, I still kept feeling dizzy. The Doc is the kind of man that tells it like it is. The worst thing I heard was that had I seen him four years ago removing my pluera would have been a much simpler procedure. We asked so many times in 2004 and 2005 why the pluera just couldn't be removed and we were told every time that this wasn't done.

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.

He painted a very bleak picture of what would happen, because I have another tumour under the diaphram, and because I had cryo first, he isn't sure whether it would be easy and give any benefit. The worst is the fact that I would have a cut from the top of my shoulder blade right down the left side and curving inover by the last rib, I guess about 20" in length. Its not the scar I'm worried about but he said it could cause a lot of nerve damage pain and there is the possibility he might just open me up and close me up without doing anything.

When we got on the train to come back it was full, hubby got a seat with another women and I sat on a single. Because we were unable to talk it through, my mind was working on overdrive, Gary's headache turned into a pounding one where even moving the head hurts and by the time we walked through our front door we were both exhausted. So he didn't sleep and I dreamt about surgeons knives all night!

I have spoken to my two best friends and they both think I shouldn't consider it, my eldest brother (always the optimist) didn't want to comment and I haven't told my other brother yet.

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.

I use to love walking our dogs but they are terrors on leaders and pull better than a steam engine, this is because hubby prefers taking them over the fields and letting them run. I keep threatening to take them for a proper heal walk but I get so cold so fast, hence the padded jacket, I too will look like the mitchlin man, so if you see me out with this bright pink jacket being pulled at 60 miles an hour don't wave as I'd never see you flash past my eye's.

Enjoy the snow and no doubt I will be back on pondering my thoughts.

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