Friday, 31 October 2008

Mesothelioma and Cryo-ablation

Well if your reading this then you obviously have mesothelioma.

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.

Its a total dilemma!

When I got accepted for cryo-ablation I thought I had found my salvation and my friend could go and reside in the antarctic but I didn't manage to pack enough of it off. And thats the problem, no matter which bit goes another comes along!

Okay thats enough for now, will update after round two of cryo, hope my china man doesn't decide to jump back in! Hopefully he got lost in UCLA and never found the exit door.

Good luck to you all who have this friend .. you know what they say, keep your friends close and your enemies even closer.