Prof Vogl to talk to Doctors in UK

Hot off the press so to speak but thank god one of our surgeons is fighting the cause and has managed to secure Prof Vogl to come and talk next month at the British Thoracic Oncology Group, its a three day event.   He is going to discuss the technique of chemo-embolisation, You don't know which surgeon has done this, well its John Edwards from Sheffield.  Who say's that surgeons are just interested in opening you up, its good to know that John looks at both sides of treatments, on a personal level I know of only one other surgeon who does that and that's Andy Owens.  We need more Doctors like this who are willing to go that extra distance for us.

I hope that Prof Vogl gives a good speech and that this technique can now be taken seriously over here.  I only hope that Dr Abtin will come over one day and do the same presentation.

Lets hope that the newly diagnosed in 2010 have the option of this treatment available - I can't believe John has managed to get this going and I hope Prof Vogl has good facts and figures to prove how well this treatment works.  He may not be that happy if we end up with it on the NHS as he will loose out financially of course, so that must show the Prof has good integrity if he is willing to share at a cost to himself.

On that note I will go.

Happy New Year to you All

Season's Feelings

It's strange but when you have something like mesothelioma, active or in remission, you still take life for granted.  I promised myself that after surgery I would start to live and do what I like but as always I have carried on doing the same old.  I met up with a friend over Christmas and I haven't seen much of her this year, I made the usual promise yes we will get more time together, but somehow I know I will not keep that promise.

I was toying with the idea of giving up work but as I am now only working mornings and I roll in the office when I'm ready rather than appearing at 8 or 8.30, sometimes its 10.  Obviously if it's that late I might not finish till 3 but I tend to do what I feel like so why give it up? 

The cold weather does nothing for me, even as a teenager I hated going out in the cold, so if I didn't work what would I do all day, staying in the house drives me stir crazy and everyone I know works.  It's not like I can go to the gym and do what I use to do .. which ends up making me feel frustrated, I have never been into shopping, so popping into Darlington or the Metro Centre isn't what I call enjoyment.  God help me I even hate spending time in the hairdressers!

So what will I do in 2010, hopefully if I can fly this year I would like a couple of holidays, but Dubai will certainly be out of the equation due to the MST and the laws changing out there!  Barbados might be worth a week but the standard of service is no way as good as Dubai.  I would love to go to Vagas again, we did that with hubby's work back in 97 and it was fun.  I would like to do a cruise round the Caribbean but hubby hated it when we got off the ship and people were hustling you all the time .. no fun or relaxation there then.

I do know what I want and that is to stay in remission, try and get fit, maybe take up Pilate's and if it doesn't work as well this time try and find a different instructor, I would like to try ballroom dancing as I know that would help hubby's stomach shrink .. now that would be nice!

A lot of people have died this year again with this disease, some we hear about and some we don't.  I don't go onto the websites much as I dread to read someone else has fallen to mesothelioma and although I may not know them it affects me badly. 

So to those of us who are still going I pray we keep strong and healthy and which ever treatments you are going for or have done, it is working and hopefully we will all still be here this time next year planning our next year ahead.

Post the Day

I hope you all managed to eat some Christmas Dinner and celebrate the day in reasonable style.  Our whole Christmas took a different turn.  We were having my mam Christmas Day and taking her home on Boxing Day, that went pear shaped and mam came early afternoon Christmas Eve.  We had arranged for a couple of friends to call over at 7 for a little nibble and drinks, they needed to be back at a reasonable time for children etc, but in between we had unexpected but welcome guests arrive at 5.  Since the arrival of mam and the puppy I was up and down every 5 minutes so by 7 I was on my knees.  Instead of our friends leaving at 10 I had to send them home at 8.30 as it takes forever to get my mam ready for bed.  I think we were in bed ourselves for 10, I was exhausted and aching.  With the help of a tesmezepam I had a good nights sleep but Christmas Day the whole up and down continued right through the day. 

To add insult the Pup decided not to have his usual nap and just kept on all day!  We finally got to open santa's gifts around 5 pm but that took forever because the pup was into everything!

I'm pleased there wasn't much on TV as we haven't seen any of it!  We bought a new game for the wii and thought that would be good fun on the night - its still in the packing unopened.

Last night we went up about 9.30 and I took another Tesmezepam before sleep.  This was another good night's sleep and waking up is quite a joy as the pain is so much less.  Obviously I can't take them everynight but I do believe I would have been on my last legs if I hadn't.  As it was by 7 on Christmas Day my Kidney was aching but they had managed to keep the worst pain away for most of the day.

We now have hubby's parents with us for 2 days but at least I'm only up and down for the pup and am sure will get some help with that.

He is a hungry nosed little thing, food is always on his mind or biting. 

It has been a better Christmas in many ways, I'm not thinking about it being my last (as I usually do) or wondering whether the Chemo will be as bad as the last dose (Two different Christmas's worrying over the needle) so I enjoyed it. 

All I really want is a good sleep, to be able to drift off in my chair when I want, I doubt that will happen for a long time to come, but the blame only lies with me as I was the one who pushed for the puppy, forgetting how much hard work they are.  His toilet training is really good, he goes to the door nearly all the time, only a few little accidents in the house - so that is impressive.  the problem is he can go all night without a pee but once he's up he seems to want to go every 10 minutes, think I'll by diapers!

I also scored brownie points as I have eaten extremely well these last couple of days and hopefully the scales will back me up on that.

Looking forward to the new year and wish a very healthy one to you All

Merry Christmas

Dear All

From our household to yours we wish you a Merry Christmas and hope that 2010 brings a miracle and another treatment for Mesothelioma.

I know that for a lot of us this year has been hard, the decisions we have had to make and the changes having this cancer has made not only to our lives but to that of our families.

Like everyone involved with mesothelioma I wish that a mircale cure was on its way and who knows what could happen in 2010.

While we wait for that mircale lets not forget the miracle of life itself. 

Thank you for the support I have received this year and I hope that in some way I have been able to help one of you.

Merry Christmas

Scan Results

It has been a long day and waiting for the clock to turn to your appointment time is like waiting for ice to thaw in the Antarctic but the time came and off we went.  The Doc was running 2 hours late but was worth waiting for as he said

NO CHANGE

the mass at the bottom (thickening and a funny looking nodule) haven't grown so we are over the moon. 

I was thinking this morning the last time we first had snow was December 5th when we went to Sheffield for the first time to see John Edwards about surgery and I came out, after a 2+ hour wait, feeling depressed with the only thing to look forward to was dying.  The snow was falling heavy today and I was hoping the news wasn't going to be the same, I would then hate snow for the rest of my life! 

I actually made the Doc's day as I am the first person he has ever met who has gone through this type of surgery ..

I have a few worries as it was a different radiologist to the normal who wrote the report and I still want confirmation from Sheffield that it is ok, but on the whole I am so happy.... All I need to do now is find a way to get my muscles to relax and uncurl so that the pain eases!

I am off to celebrate with a drink or two, although am shattered.  Why does it make you so tired when you are waiting for results all week, we don't think we are stressing that much but obviously we do.  I stayed at work longer today and even went in earlier, then came home and vacuumed anything to keep my mind off watching the clock.

Another good thing he said was that the air pockets are shrinking, this means flying might become a reality next year .. I can imagine the sun on my bones as I write this line!  Also means should any growth return I will be able to see Dr Abtin and have it cryo-ablated so fingers are staying crossed that it sorts it self out, but the flight to LA won't be needed for many long years to come.

Must go that B & C is looking awfully tempting to me, thankfully Bear has just fallen asleep so might even manage a few sips in peace.

I hope that everyone else who is waiting for results gets the same good news I have.

My chinaman has certainly ran for the hills!

Thank You

I would like to thank you for the emails of good wishes I have received over the last couple of days.  It is a nice to know that you can take the time out of your day to wish me well and I appreciate the thoughts.

I must say I am not worrying as much as I usually do and I am putting that down to I am due a break from worry and treatments.  It's nearly a year since anything was done to the meso, nearly a record in my history of this cancer, but I am hoping that I will be as good as Graham or Terry and have clear years ahead.

I have just had my hour massage which was wonderful and feeling quite relaxed and pampered.  My therapist has become a good friend, its nearly 5 years since we met, and is doing me an even bigger favour.  Two years ago I bought 2 pairs of trousers and each needed taking up.  I mentioned I'd never got around to doing them and before I could say boo to a ghost she had Gary dig them out of the wardrobe and has took them home to alter.  Spoilt am I not, I was surprised they still fit and because of today's fashion they can still be worn.  I haven't worn a skirt for over a year and seem to live in jeans so it will make a nice change to have some dress trousers on for a change.

Danny has sent his part two of his story, it is a good read as he manages to bring in a lot of humour along with the pain.  If we can't laugh at our situation sometimes then we don't stand a chance.

Any illness is awful to suffer and I always say to someone who is ill that their pain\anxiety is relevant to them and they should never be affraid to share how they feel.  The amount of people I meet at healing and they say Oh I have nothing to worry about compared to you and I always say that's not right.  Illness whether its the flu, back trouble, headaches can bring you down.  My brother has MS and I marvel at how well he deals with things, I worry about him all the time.  MS can get worse overnight and I have seen him go down hill many times, each time the affects of it get worse and yet he always manages to raise a smile.  He makes me feel guilty as I am only working on a morning yet he is still doing 10 hour days. 

On such a positive note I think I will leave it there, tomorrow is another day and either by 6pm tomorrow I will be popping a cork to celebrate or cry, and that's only if the scan results are in, if they aren't then I'll still have a drink anyway.

On that note of drinking does anyone else really enjoy having a drink anymore.  I think the MST has something to do with it, although I don't drink every much and over the last year every little, I don't seem to suffer from hangovers but I never get tidderly anymore either . if you get a chance please let me know how it affects you.

Thanks again for your well wishes and if you're waiting for results GOOD LUCK TO YOU TOO

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