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.
Sunday, 23 November 2008
God, what a week I've had, On Thursday felt so much better then I even went into the office for a few hours, felt so accomplished at getting something done and seeing my colleagues. It's amazing how much you miss the people you work with.
Wednesday, 19 November 2008
What a week its been, have had an middle ear infection that has had me reeling from one side to the other, a memory of chemo came to mind. Thankfully seem on the up.
The images are before and after, obviously the top one is before. To be truthful its not totally after as the image on the right is half way through the procedure and the image isn't in the exact same spot on the CT as the image on the left but I'm sure you get the feel of it.
Can you see on right hand image the blackness running through the tumour, well that folks is cryo-ablation at work, freezing and killing this tumour. It's not an equal match to the image on the left, but after 2 hours of exporting images only to find it had duplicated the same image a mere 56 times I gave up and thought I'd just post these two.
I had to have bloods taken as its been a while and with this ear carry on the Doc thought it a good idea. Thankfully the District nurse didn't ring to say she was arriving and just landed at my door with her yellow bucket. It certainly didn't give me a chance to panic about the needle. It was nice catching up as when I was first diagnosed she came out to redress my wounds. To be honest I think she was shocked I was still here, its been 4 years!
Hope you like the images and it gives you an idea of what a tumour looks like, when I manage the export I'll pull off one of the rind from a decent angle.
Wednesday, 12 November 2008
I was trying to remember the last time I didn't suffer from pain of any sorts and looking back it must of been in the 80's. I guess I have been pretty unlucky as I had endometriosis then this! Infact I thought I had endo in the chest when the symptoms first began, when I breathed I thought my lung was sticking to my ribs, that was back in 2000.
Through operations and tumours I always tried to turn up for work, I use to work 7 days aweek before I met hubby, he talked me round to working 6 then 5 1/2 days now I'm down to 6 mornings. This last drop was during the last Chemo and to be honest I still don't find enough hours in the day to do what I want.
How do people manage to get so much done? When I worked 7 days I still found time for friends, housework and going out. Now its 6 mornings and I find I can't fit in the same things I did before. Does anyone out there have any tips how to squeeze more time out of 24 hours?
What do you think of my youngest, she's beautiful isn't she. Many years ago we bought a superking size bed so the 2 shepherds and us could fit in. Now its the youngest and us, you should see it at bed time its a race for who gets where, usually the dog wins with the most space.
When we go on holiday we get lost in so much space as we are both use to sleeping on the edges we forget there's a middle.
A friend of mine has gone off to Germany for chemo-embolization, hopefully it went smoothly for him today. I will be quizzing him tomorrow to find out what happens and how it works and promise to post this information as soon as I can.
Dr Abtin is going to send me some actual data on cryo-ablation after they publish their paper in February, this could be the way forward for new cases where they only have single tumours. I wish it had been around when mine were single instead of becoming fused together and leaving rind round the lung, but at least there is some light at the end of the tunnel for those new to this disease.
Everyday something new is coming along and I hope that there's plenty of us still here to benefit from the new developments, after all I thank my lucky stars everynight for the treatments I have had. Without the initial surgery that removed a tumour from my lung and several mushrooms from my chest wall then onto Alimta in 2004 I would certainly not be here today. The discovery of cryo-ablation which has now killed two tumours extended from the main fusion would probably of seen my hubby organising a funeral at Christmas instead of sorting the Turkey out.
Hope keeps us all alive and without that and doctors/scientists doing their bit we would have nothing at all.
Sweet dreams ......
Thursday, 6 November 2008
Friday, 31 October 2008
What can I say, sorry that you have this bloody cancer, well Yes I am, but sorry isn't going to fix the situation that we are all in.
I have been battling for 8 years, 4 of which after diagnosed. Its no fun but we have to keep on plodding along trying to find out what new procedures and treatments are out there.
You spend weeks browsing the internet, sending off emails requesting information. Sometimes you get answers sometimes you hear nothing.
I was lucky when I sent an email to UCLA asking about RFA carried out by a Dr Suh, I was turned down flat in England due to the size of my friend. Anyway some kind person in their enquiry office sent it on and I got a reply. After sending my CT and (by First class post .. what a fool it took 3 weeks to get there), I had a response. We would do cryo-ablation and within 3 weeks, hubby, me and friend were flying out to LA with no idea what exactly they were going to do.
It was certainly an adventure, the Hospital was massive, the Prof was actually off with an injury, so we met another Prof who had helped develop this procedure. He told me flat out that my friend was trying to encroach on my kidney and my aortia was being strangled! What kind of friend does that to you, that nasty cancer friend .. thats who.
I was admitted at 5.30 am, good job we had an alarm! and we walked around to the hospital. Strange how you do these things in a different country as I wouldn't walk around here at 5.00 in the morning. Before I knew it I had a needle in my hand and was being wheeled down to the CT room.
I was introduced to the whole team, the prof and 7 others. Obviously I was sedated, my friend was adament to cause as much pain as possible, and I have to say I didn't feel much pain until they tried to get to close to the kidney.
I always described one of my pains as a china man with a blunt axe attacking me under the arm, well blow me down with a feather when I was pulled from my sedation by terrible pain and in front of my eyes this china man jumped out, obviously it was my imagination, but I thought wow I've won the battle.
I didn't walk back to the hotel, but I didn't feel that ill, totally drugged up but hey we need some fun now and again. The next morning we returned and had xrays etc. Also had a viewing of the procedure. It was great to see this friend of mine turn black and die. I came home a new person but forgot about the rest and six weeks later the scan showed the other tumours had decided to grow much faster than earlier.
Typical, you win one battle only to face another. So we're off over the pond again next week for another round of who-dares-wins. Two more tumours getting blasted.
So now I am researching again, as the cancer is growing faster I need to find other ammunition to throw at it. Hence, at the moment I can't get my head round anything, I am looking at so many different treatments I can't see the wood from the trees or the cure for the cancer.
I have asked my oncologist to look at having my lining removed, I have had so much feed back that my head is dizzy. If I can get the lining removed any new growth can get blasted, but that means constantly going over the pond. Since being told I only had a year in 2004, hubby and I did lots of travelling and to be honest I hate flying and airports now. Also there's a danger that the cancer can spread out of the area more quickly.
I even went to park attwood to see about mistletoe, but apart from hating needles, I didn't see any proof that it worked. (Sorry to anyone it has worked for, we all have to believe in something)
Then there's this chemo-emablation, that's carried out in Frankfurt, have emailed the Prof to see how you go about getting on this course of action.
Then there's the cyberknife, not currently used in this country, but France may be looking at meso, still waiting for an answer there.
Andy Lawson went for Gene therapy, thought about this a long time ago, when he finally went for it and published in the Times I was straight on the email. Applied and haven't heard anything back.
Problem is with having a friend like mine, I need action fast. Why does everything take so long when they know that meso strikes you down before you realise what's going on.
Nobody can fully advise, must oncologists tell you to sit and wait and see what will happen, I found that waiting kills and at first when I went into remission, with hardly any meso, I was grateful and as I said I holidayed till I was holidayed out! Then I knew it was growing, nothing showed on xrays, I had a gall bladder out in case that was causing pain, to no avail the meso was striking back hard and fast. I went from Zero in Dec 2006 to 2cm in Aug 2007. Another round of chemo bought me two months of pain free time and a small reduction. but it soon kicked in with pain and the knowledge you weren't winning and first prize was definetly not yours.