Awaiting News

Finally the scan was done on Monday morning now as we all know its the waiting time for the results that is a killer, I hope I have the same results as A and D and that the meso is staying away.  What a waste if the bloody thing is growing yet I am looking on the bright side I wouldn't be here if I hadn't done all the things I've been through to keep alive.

I have often wondered if I had gone the route of Debbie in 08 and chosen the chemo-embolisation if things would be different but it is always difficult to tell.  The problem is that we still don't know which is the best treatment or path to follow.  I do know that if I hadn't had the cryo back in August 08 I could never have gone through with surgery as the meso would have been in the kidney and surgery would have been too late.

I can't believe this time last year I was oblivious to what was to come, its 11 months since Dr Edwards removed my insides, it has been hard at times but like everything else you forget how bad it was and get on with living.

Life is so special yet everyday we take it for granted that we should wake up, go to work (or whatever) and be happy.  We put our bodies through all sorts and don't think about it.  When I was younger and needed surgery for endo I would go in and expect to be back at work within a couple of days (and usually was) but as you get older you just don't seem to bounce back the same. I should feel guilty saying such a thing as when you hear about little old ladies going in and getting their hips replaced at 80 it makes you think!

Bear is a handful and has such a little cheeky character.  I dropped in his registration form for training classes and took him with me.  You would have thought butter won't melt in his mouth, so well behaved, giving licks and getting fussed.  I put him back in the car and get chewed!  When I pulled up at home I thought he had fallen asleep due to all the attention but no he had managed to nearly hang himself, his collar had looped on one of those catches .. shows he's intelligent because he sat and never moved!  He never yelped or barked while I did the 10 minute drive home to let me know he was in danger. Infact I've never known him to sit still for that length of period.

If I had done nothing I certainly wouldn't be here to watch this little fellow grow up into a big cuddly bear that's for sure.

I wonder how many of you are facing starting Chemo or waiting for results of your scans, will it be stable, has it shrunk, the worries and thoughts you go through and somehow it makes it worse when Christmas is upon us.

I guess I will have to close for now as my little gentlemen is racing around the office like a mad man - Lexi's blanket is on the list of being demolished along with my coat - I'm trying to give hubby some free time as its the final of Countdown and said I'd keep little un with me.

If you are waiting for results I hope they come out well.

Website

I put the new website up today, hubby hates it and wishes I'd left it alone!  I'm not sure either, I don't think the guestbook works either, but not being a dab hand at all this techno stuff I don't know how to repair the problem!

Your comments on it would be appreciated, I might go back and put the other one back up but will see how this one goes. 

Meanwhile Bear and Lexi are starting to bond, fingers crossed the fence that spilts the living room in two will come down in the next few days.

My scan is booked in for Monday, I hope to God things are looking good and my problems are all down to the travelling I've been doing in the car.  Hopefully the kidney pain is just caused by the muscles which have been pulled and stretched every which way they can go.

Must dash, Bear wants some company.

New Blog

I have decided to place a new blog on the website's Treatment page, this will enable an up todate reference point without having to revamp the website when we receive new info.

I would especially like to thank those in the meso circle for sending information to a new sufferer on Prof Vogl's treatments. 

My hubby said to me that the support network we have formed is amazing.  We may have to be 'Victims' as one of the circle said, but we can also be a good source of support and between us all we have a lot of knowledge that can help.

I believe by giving the various options and contact numbers or hospitals and Doctors, we are helping speed the process up and hopefully helping the new sufferer make a more informed decision on whether they take the normal route of chemotherapy, the more radical of surgery or the in between.

Mesothelioma is growing but so is the amount of information out there that can help.  If this virtual centre for Mesothelioma ever kicks off it would be interesting to see if they publish information on what is considered alternative treatments (cryo, chemoembolisation, rfa) or whether it will just publish the treatments available that have been tried and tested, at this moment alimta and surgery.

To the Meso Circle a big thank you, without all of us working together we don't have a voice.  Each person in my Meso Circle has probably formed their own meso circle and on and on it goes.  As long as information gets passed when needed then we have all done something to helping someone else.

I am honoured to be a part of this circle but like all of you I wish I'd never had to face this cancer.

Bear's home

What a journey we had on Saturday to bring baby Bear home.  On the way back we had a blow out but didn't realise.  The landrover has had this fault on the suspension since the day I got it, yes I've taken it back time and again but it still happens, so when the suspension light came on and the car started throwing us around we thought it was the fault.  No such luck, when we arrived home the back tyre was as flat as a pancake and I guess the wheel is damaged to.  How we didn't have an accident, especially as it was pouring down, I'll never know, we think we drove a good 50 miles with the knackered tyre!

Bear is a little biter, that will have to come to an end, rubber rings, plastic toys okay, my hands and face is a no no.  He has a right little character about him though, Lexi isn't keen but she's trying bless her. 

I wish I felt a little better as the journey has caused a lot of extra pain, especially on the ribs - I know in future not to travel when the car is throwing you and bouncing up and down!  Gary is exhausted too, I hope we are both fighting a bug but luck will be Gary is fighting a bug and I'm running low on fighting material for the meso.

Lexi has slept on the bed since the arrival of Bear and I found my legs hanging over the side this morning when I woke up!  She had managed to maneuver herself so she could be flat out and had must of the bed Doubt this will help my back aching!

Well better do some work, have elected to work from home this morning and as yet haven't done a thing!

Meso strikes again

I can't believe it, not only have I spoken to a new diagnosed person this week but my one of my best friend's brother has just been diagnosed.  We had hoped it would be just fluid only but when I went to see him today and asked about tumours etc he didn't think he had any.  He later said his pleura was thickened and that's why they did a VAT.  Why don't they explain that the thickening is the tumour?

Seeing it from the otherside is so different to dealing with this disease yourself.  I now have a different perspective, yes I have emailed and become friends with a lot of people, I've spoken on the phone but I didn't know the person, this is the first time I've actually known someone personally for years that has just be told such devastating news. 

I was going to say thankfully he's older than me, but what's thankful about that he still has this cancer, we know the tumours grow slower as you get older and usually the diagnosis use to mean certain death not that long ago, but meso is being diagnosed a lot earlier these days, usually before it has a chance to totally wipe the lung out, so I am hoping again that all those statistics out there are wrong. 

I am a strong believer in that the earlier it is discovered the more affective the treatment and again I was asked the question chemo or surgery.  My mate wants her brother to go through surgery but I have tried to look at it from both angles.  If the meso is young then maybe the first course should be chemo, after all a new meso member has had good remission from chemo and without too many side effects, if he goes straight for surgery that's a year of his life in recovery, okay maybe not quite that long, but the first few months are hard work on both patient and family.  Then again if he went for surgery now while fit, maybe the asbestos bit would be removed and the rest of the seeds would come away with the lining and we would have full remission, but then we don't have cryoablation to remove any unwanted tumours that grow!

It also brings back rotten memories of those first few weeks when you don't know which way to turn, what to listen to and what to ignore.  As Lorraine put it, she wouldn't wish the effects of chemo or surgery on her worst enemy, worse for her as she has been there through my treatments along with hubby and has seen the damage both can do.

Bless, he and his wife are still shell shocked as he was only told yesterday, then I arrive and give out all kinds on info on the disease and it's information overload. 

Your coming to terms with a cancer that will kill you, whether your 40 or 70 and use to being fit and healthy its a shock.  What you think is a trapped nerve or just a bout of pleurisy leads you to a death sentence, is hard to take in.  I must admit he was given a booklet on it, more than my piece of paper when I was first told! but it's still lacking.  I don't know what to suggest to make the telling of the cancer any easier or what information should be given at the time but what is happening at the moment isn't enough. 

It was only the other night that Terry123 wrote and let the EPP group know that Bill passed over, in one way its good that we have all formed a support network but the flip side brings us bad news too when we loose someone to the disease.

I was out of sorts today to, I got up felt terrible and unlike my normal self I went back to bed.  I awoke at noon, I had sweated the dead rabbits, my weak spots were painful and I nearly cancelled as I didn't think I would give him a good impression of survival.  Thankfully neither he or his wife noticed and we did have quite a long conversation.

When I came home hubby had pulled out the offcuts of carpets we kept, Bear's sleeping area is complete.  Lexi wasn't too happy when he brought the kennel bedding out of the cupboard and stuck by his side all day.  For a joke I nearly went upstairs and pulled the suitcase out .. I think she would have gone spare!  At least that would keep her confused, as tomorrow the pup arrives and none of our lives will be the same again.

We have been strong and are only bringing back one pup, just hope our heart strings don't get too pulled tomorrow when we see the little girl for the last time.

I also must get the changes loaded to the website as I have a wonderful story from Danny which will lift alot of people out there.  If anyone else has finished their pieces please get them sent in asap.  Its true, most of what we read is depressing and above all else this is a time when we need to hear happy endings, or near happy endings, obviously death isn't a happy ending, but success with treatments, years of life we weren't suppose to expect are good news.  If we all believed the statistics then most of us would be pushing up daisies by now, especially me!

I know that some of my postings have been heavy and I also know my story isn't pleasant but I hope that's the worst end of the spectrum, Danny's is on the good side of the spectrum and indeed I know a gentleman who has become a friend, diagnosed a week after me, we went through chemo together, he wasn't as affected by the chemo as me, and he is still going strong.  Very little growth in 5 years and still doing what he wants in life.  These are what we want to hear, success stories, but we also need to know about the sad stories too, how then do we place our own luck at survival from this crippling cancer.

People look at me and think and through the treatments thought that I always looked well and still don't realise how much pain I am in.  I have been unlucky with the pain side, indeed Lorraines brother hasn't had much, even after surgery, and I am so pleased for him.  I know a lot of people and each one suffers differently, some have pain, others have a little and some, god bless us, have a lot.  

Another thing about this cancer is no one can tell you which way it will go.  If we had colan cancer nearly each sufferer has the same symptoms, the same pattern of illness.  Mesothelioma never seems to follow the same pattern with anyone.  I'm A Typical, which means its not text book meso, but what is textbook meso?

Many of us have been to Action Day's and listened to the patients view, and at question and answer time, how many have actually experienced the same as you?  We have one thing in common breathlessness, which comes on so gradual that it is hardly noticed, but then that doesn't cover 100% of all mesothelioma sufferers.

I've said before I hardly had colds, I didn't suffer the normal illness's everyone else did, but I had endo then straight into meso (how unlucky was that!) I bet the majority of you with meso hardly ever had a day off work, didn't suffer from colds, sore throats etc.  I didn't get a bad chest very often but when I did it was really bad, but maybe only had one every other year or longer.

Going to crash on the sofa as my back feels like the old iron bar is pushing into it, probably another hot water bottle tonight as well.  Must feel better for tomorrow as its 5 hours round trip in the car, which will knock me back without feeling out of sorts to start with.

To any one reading this, if you think of any ideas a what a Doc could do when they are going to give the bad news, I for one would be interested.  Maybe we could group them all together and send them on to the chest guys to read.  After all it should be the patients that make a difference to how we get treated.

Good night and god bless

Jan

No winners

The damp has a lot to do with pain don't you think?  Since my few days away at Stansted my body hasn't been the same, I was in that good feeling, now the body is back to that errr feeling.  The funny sick feeling has returned, my kidney is once again aching and my bones hurt.

I went to the physio on Monday and she worked on my neck, while I was there I mentioned my left shoulder hurting more and the fact that lifting it above my head was causing grief.  Sure enough it's all down to the funny angle of the ribs and the muscles that are stretching in awkward positions.  Not that I'm complaining really, after all here I am still with the land of the living and hopefully will continue to be for many a good year yet.  Its just that you do get down with the pains, then when its cold and damp it makes it worse.

Can you believe its the 1st of December, this time last year I was oblivious to what I was going to do and my only thoughts were how long I had left.  I spoke with a gentleman last night that has just been diagnosed, well maybe a couple of month ago, and he still hasn't made any decision on which way forward he wishes to go.  Again he was saying that some of the professionals didn't offer any good advice and it was Alimta or nothing or surgery and nothing.  If he is in early stages of the disease it makes the options harder, do you really want to make yourself so ill having surgery if you have only one or two tumours?  Should surgery be held back until your whole lung is covered then at least you have a reason to put yourself through a lot (and I mean a lot) of pain.  Do you take chemo now in the hope that it kills it all and gives you remission for lots of years to come.  I don't envy this gentleman the decision he has to make.  One thing is certain, with meso we have to make a decision, we can't just leave it and hope for the best.  We talked for quite a while and I said something like once you're on the treadmill you never get off, but isn't that true about everything we do.  The only difference is on our treadmill we are trying to outrun the meso and as long as we can keep doing that we all have a chance.

Many people with cancer have the same problems and worries but with meso and only a few other types of this nasty disease, our options aren't that great as we will die, other cancers these days are cured.  The feelings and worries are the same but many of the outcomes are so different and I have realised over the years that we can't compare our cancer with that of breast cancer or colan cancer.  If you catch breast cancer early your a winner, if you catch meso early you still loose!

Guidance for what to do isn't in black and white as no one can say for sure which way to go down the treatment line.  I know that my subconsciousness is worrying (because of my weird dreams)  what will I do when the damn stuff reappears, in the USA I would get cryo but what about here?  I have said I'd go cyberknife but never tried it makes me worry in case it doesn't work.

Let's hope that the New Year brings in a new line of treatment that someone somewhere has secretly being testing and blasts this nasty cancer to where it belongs .. hell