MARS Trial

By all accounts the MARS trial showed that surgery wasn't a winner.  I'm not surprised really, in all trials due to the way the patient is selected, not many become a success.  Why can't trials be done or handled in a different way.  I was reading the outcome in Mesothelioma UK, many might not have recovered enough from chemo to want to undergo surgery, infact it said that a third of the group selected for surgery didn't go ahead.  So that surely affects the figures.

What we need is a full database where patients (if they wish to) and specialists fill out info for all to see, this would be a much better gauge as to how long and what difficulties patients had. The usual trial way doesn't work and I don't believe ever really will. We still need new releases but give options to the parties not random selection.  If someone has no chance of remission and offers them self as a placebo they can't but could end up taking the drug and someone that has every chance could end up on the list that doesn't receive. 

If surgery is withdrawn what happens to patients like me that had no where else to go, yes my pain went up but I am still here to moan about it and lets face it we have to have something in life to moan about!  I know several who have had surgery and had no pain and are still here too.

Why put someone through a gruelling chemo before surgery?  if you are going to chop it out do that first, then maybe just follow up with tomotherapy.  Keeping the chemo on the back burners.  I don't know whether this would work better or not, but this is the stuff that doesn't happen in trials but in life in general.  If it was recorded country or worldwide.  We need something that states the growth of the tumours at the time of treatments, how many people have had almita and survived a good 2 years before remission was over, many have had surgery and lived a cancer free life for more than 2 years, how many choose not to have anything etc.  If a database was set up correctly it could be queried in such a way that you could find out the remission periods over counts much easier.  I know I am rambling but trials annoy the every essence of my soul. 

As for my own situation I am no wiser reading the report, there again it isn't written for joe bloggs is it, its to be deciphered by the specialists as that's why they went to college for.  The gist is that it is growing.  One thing I did notice is some are growing faster than others.  I am currently investigating the worth of getting 'My 3rd Boob' cut out. Hopefully, a referral will go this week to one of the best surgeons I know.  I am hoping that it can be removed without too much trouble.  Less cancer = longer life is my belief.  As for the right lung, once I receive a copy of this scan and it doesn't take 3 months to arrive I will send it off to London and see what they make of it. 

The problem with protocol is it stops people trying new things, there are rules and regulations.  It amazes me how we have managed to progress through medicine when so many boxes have to be crossed.  Why can't seeding be removed as the norm if the person is healthy enough for it.  The lumps get bigger, and I believe its because new cells grow but old cells don't die.  Therefore, its only tissue at the end of the day not some organ that we need to live with.  Whether this is the case with meso I am unsure, but again it must do something strange with our old cells.

I heard from Cher yesterday and was sorry to hear that she had such a terrible time after her first dose of chemo.  To spend the entire 21 days in pain and being unable to eat or drink is no fun and I am sure all our thoughts will be with her over the next 4 months. 

I have also been asked if there is a Meso Warrior group in Spain,  if you know of anyone out there can you please let me know so I can pass on the information.

Enough for now, work is calling not that I fancy going out into such a dark and dank day.

Bonfire - instead of guy fawkes it would be nice to burn the mesothelomia

Although I had my scan on Tuesday in the back of my mind I knew the results would be in by Friday, so I ignored the fact.  I knew when the phone rang about 6.15 on Friday it was my GP.   The scan is in, things aren't great, apply for a copy straight away.  He will print out a copy of the Radiologist's report and leave it for me to collect.  Would we like to talk about it, is there anything I can do?  You all know how the conversations go, although most have a team in place to help them through these times, once again its just hubby, GP's and me.

I wasn't shocked to hear that the radiotherapy has done nothing to stop the mass that is growing outwardly, indeed I joked the other day about having to buy a bra filler for the right to even me up.  I wonder if the mass is more like those solid fibrous type than the baked beans type I had removed along with the rest of my chest.  Strange though, because I feel really good and I do mean good.  My pain down my left side seems to have settled into mild discomfort, my tin box inside my left side is only annoying when I get up, the only thing that has been painful or maybe more annoying is my new mass, I may need to think of a name for this one - following in Debbie's shoes here - but to me its not really my meso as my meso is inside my chest not outside!  I suppose 'My 3rd Boob' would be appropriate considering where it is residing.  As for the rest it sounds like the invasion in my right side is continuing and the left is growing, I don't know whether its in numbers or just size.  Some thickening continuing around the pericardium (false one in my case).  He did tell me that some are showing slow progress, well that's a relief!

Even harder for me to understand is how the radiologist knows that 'My 3rd Boob' hasn't responded considering I didn't have a scan before radiotherapy and he had done my last scan in July - only a few weeks before this appeared.  Had it shown up on the Scan and he didn't report on it? Has my 4cm square become 5.  I know its heavy as my boob has a new substance about it and I do wish it was me putting on weight. 

Typical, I finally come through the pain of the surgery and get lumbered with something else.  This meso is becoming more strategic than I anticipated.   

Even with such news we had a wonderful weekend again and nothing was going to spoil it.

I had forgotten it was bonfire night and hubby decided we would have our own big family party, Bear, Lexi and us.  He prepared our bonfire in our burning bin, planted fireworks in various spots around the garden, we made curried parsnip soup, followed by hot dogs and BBQ spare ribs.  Bear wasn't bothered about the few bangs from the fire works but spent most of the time  running round the kitchen at times looking for the lights that had shot up from the ground.  The noise doesn't affect either of the dogs, which I must say I am so pleased about.  It was also the first time it didn't rain on bonfire night for many a year.

Today we went to Seal Sands and watched the local inhabitants battle it out for the love of a woman

These two males were fighting for the affections of the female in the background.  She preferred the one at the front and kept nudging his wounds every time the other one hurt him.  I think we spent about 30 minutes watching and snapping photos.  Hubby has become a really keen photographer and is trying to teach me .. Good luck with that.

To you all, keep living life - no matter how hard it gets remember something to make you smile.

Trick or Treat

Living out of a town in a small hamlet we miss out on the trick or treat which took over from "penny for Halloween" in my youth.  Every year we have always made our pumpkins and for once herewith is our effort to ward off the dark spirits that roam on the 31st of October.

Spooky

After the hard work of carving out the features on the pumpkins some of us needed a little nap and how could I not go and be cuddled by such a wonderful Bear.  

I hope everyone had an enjoyable time and the families that went trick or treating collected plenty of sweets.

Just five more minutes

Back in the real world  today was my scan and seems its a week of appointments as tomorrow its the flu jab and the dentist.  I suppose its better getting them all over and done with at once.  I would like to get my teeth veneered, considering at times I think I don't have that much longer left it is a waste of money but then why shouldn't we look our best, if you look ok sometimes it makes you feel alot better.  Would be different to go through pain for vanity rather than for cancer.

Time to go and dig out my chores for this evening, I need to do some work on the new housing site at Howden.  When we went to site yesterday I think the ensuite in the spare bedroom is too big taking space from the bedroom so I need to see if I can adjust it somehow.  One thing for sure is that each of the houses at Howden will certainly be different inside. 

Looking on the bright side in 4 months we will be looking forward to the arrival of spring, I know I shouldn't wish time away because it is here before we know it, but already the dark nights are soul destroying.

Life between Mesothelioma (filing away the memories)

I spent most of yesterday transferring photos from the hard drive of the computer to a separate hard drive.  As hubby is determined to get me into photography I thought I had better tidy up the computer.  Our digital photo's start at Xmas 04 and it was strange going back over the dates.  Here we went to Dubai after Radiotherapy, then in the middle of Chemo, here was the safari, then the cruise etc.

It has made me wonder, for the thousandth time if I did make the most of my cancer free days.  Looking at the photo's I did more in 05 than I have done from the Op in 09 to today.  I know that I have, even if I haven't holidayed all over the world, but I think I spend to much time worrying over things than living them.  Even my aromatherapist said I seemed more at  home with myself recently, her meaning since the meso has returned as I'm not on edge all the time wondering what the next scan will say.   Even though now it is the worry of how much the mesothelioma has grown I wonder if she has a point.

I have so much still to do with my life, yet I keep procrastinating because somewhere in my brain I think I will reach old age! 

I am wondering what will happen to my growth and re-read Ronnie's posts when she had hers on her back, problem was I couldn't find the post that said how it went after the radiotherapy.  If someone out there knows could they let me know.  I said to hubby the other night, if it keeps growing at least it might just grow into my boob, although I will be lopsided!

This time of year the birdfeeders are full and my windowsill in the office has its plate of birdseed.  I love watching the greenfinch, blue tits and robins come to the window.  Especially when they tap the window because the plate is empty.   I wonder how many years left I will have the privilege of watching this.

Funny but I do feel comfortable with myself, I am more like my old self and think that maybe lifting the pregab to its proper dose of 2 has put back the balance of signals in my brain cell.

Bear stealing our cuppa

I am going to have to watch Bear's chin again, last night he put his head in my hands and rubbed his chin.  On inspection I didn't find anything but I don't want him having those hot spots again.  Although I have clipped a mass of hair just above his tail because he had dry spots and I want to get air to the skin.  Now he looks deformed!

But he does love a cup of tea if he gets a chance so should you ever visit, never put your mug down otherwise his nose is in it.

Sitting here isn't getting the most out of today,  still have to do more at mam's and finish our task of yesterday.   For years I have been saying I am going to make DVD's of our time together, pulling info off old camcorder tapes and rescan old photo's etc, but I never seem to find that time because it is a dedicated project and I doubt I will ever complete it.  Life is just too short, not just for us with meso but for everyone.

Wisdom for today meso warriors, enjoy the moment!
Jan

Hope its not in the Pericardium

I was thinking about Debbie undergoing her gall bladder operation and it brought back terrible memories of the pain I went through from 06 to 09. 

I remember what I called a near heart attack session every 10 to 12 weeks.  I had asked if it was the cancer in my heart and my oncologist said no and it was unheard of, the new chest man I was seeing said my heart was sound so my GP thought it wise to see if it was gall stones.

I did have gallstones so in the hope it would be one less pain to have organise around I had the gall bladder removed.  As we drove up to the hospital I wanted to turn around and go home.  Also I had arranged to do an interview for Action Day 3 days after surgery - which I still did only I was drugged up with so many painkillers and a friend came and did my makeup so I didn't look ill.

While I was in recovery I went into a session, the pain in my heart area was terrible and for the rest of the night in hospital I was in pain.  It also didn't help that they had nicked a vein so I had internal bleeding too.

The 10 - 12 week sessions continued until the operation where the culprit had been the meso living around my heart.  (It had attached to the heart sac - the pericardium)  I guess the sessions were caused by growth, and I honestly think in my case the meso had a growth pattern, hence every 10 to 12 weeks.  Through the entire experience pre-diagnosis I had sessions, usually every 12 weeks. 

I said to my Doc "that was a waste of time" but he assured me that had the stones started causing problems I was better off loosing the gallbladder while I was reasonably healthy.

I hope and pray that it is the stones causing Debbie's problems. 

Remember mesothelioma isn't the same in everyone I am A-Typical which means non of my illness has not gone the way the text books explain - but when patterns form I believe we should always take notice.

Debbie probably will not know whether its the stones or the meso until she has gone through 4 months of no pain and I for one will keep my fingers crossed for her.

Yesterday I kept my appointment and had my mammogram, I did manage to have my left breast squashed in the vice, painful, but I thought it could be helpful to see how far (if they report back on it) the meso has travelled and if it is affecting anything in there.  I am having a lot of pain both where the extended mass has grown and where it travels down.  The lump thankfully just missed the vice as it is flatish against the ribs - very thoughtful of meso wasn't it!

On that note I had better get moving, I have a busy day ahead with site visits and then hopefully catch up on some office work.

Quickly adding having raised the pregab to 2 I am starting to feel more human, long may that continue.

Meso Scan on the horizon

We are all coming up to the time of scans again, the 3 or 4 months fly past.  I still can't believe some still only get an x ray every 3 months, which we all know doesn't actually show much, especially with meso.

Hubby sat me down on Saturday and discussed how I am doing on the pregabin, not good in his eyes, and to be honest not good in my own mind.  Nevertheless I have increased the dose to 2 to see if it helps, then maybe think about dropping them and going back to increasing my daily pain.  We don't seem to have much choice pain or tablets!

My breast screening is on Thursday, that is surely going to be fun and I do hope that they excuse my left side completely, although if they do just an ultra sound of it maybe the tumour might show up. 

This time 3 years ago no one thought I had much time left, it still amazes me that I am still here even though I started out with mixed Epithelioid and Sarcomatoid cells,  thankfully I believe only the Epithelioid ones have remained, the slow growing variety instead of the intense aggressive ones.  Yet meso can change so fast from being dormant or slow to all out war, regardless of strain. 

Hubby got into photography a couple of years ago and has asked for a new camera for Christmas, his aim is to get me to use his old one so we can share a hobby together.  He is into taking photos of birds whereas my choice would be animals or scenery, maybe if I get ok at it then I might sweetheart him to go back on a safari one day. 

I went back down mam's this weekend and we spent a couple of hours going through her things, each time I picked something up I could smell her aroma and I am finding it emotionally hard to pack her clothes up for charity.  Each time I walk in I expect her to be sat there and I doubt that will ever go.  I said to hubby "Maybe when we get old we should down size" the hurt that shot across his eyes was painful.  I wish I could think sometimes before I speak. 

I still have slight backache and it occurred to us both today that maybe the flight helped increase the fluid in my lung, if that is what it is.  Now that some of the meso is visible and I can actually touch it, it puts the cancer in a different light.  I find because it aches and has fire sparks I keep touching it and am sure it is growing, I should draw a line around it so I can keep track but then if it grew out of the line I would be gutted.

On such a terrible thought I will sign off for today.  Keep your chins up everyone, we will keep fighting back and somewhere out there a cure will come through. 

Jan