Thursday, 31 December 2009

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

Wednesday, 30 December 2009

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.

Sunday, 27 December 2009

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

Thursday, 24 December 2009

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

Friday, 18 December 2009

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!

Thursday, 17 December 2009

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

Tuesday, 15 December 2009

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.

Friday, 11 December 2009

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.

Thursday, 10 December 2009

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.

Tuesday, 8 December 2009

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!

Friday, 4 December 2009

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

Tuesday, 1 December 2009

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

Thursday, 26 November 2009

Winter Blues

Strange this time last year I was thinking Christmas 08 was my last and yet here I still am, poor hubby more thoughts on what to buy for Christmas presents!.  So why is it that I have started a total hatred campaign for Christmas.  I tell myself maybe because I went through Chemo twice over the Christmas periods, or is it always wondering whether this one will be the last.  Whatever it is I really have gone off the festive season.  I went shopping with Lorraine today to get me in the spirit, it didn't help although I did pick up a couple of things.  Remember when shops use to only sell certain things and department stores were full of interest with wonderful ideas.  These days nearly all the shops are filled with clothes and more clothes, statues, nice home wares seem to have disappeared, the age of either electronic gadgets and clothes fill every shop and there is hardly any room for anything else.  M & S use to sell home things and had wonderful selections, our's has been overtaken by yes .. clothes and more clothes, nearly all womens and the quality now is a lot less than it was.

I just can't seem to pull myself from feeling low either, whether its the weather, as we all know that meso or the damage it does removing the stuff, leaves us weak and the wind is no no for going out in, then the cold gets into your bones and no matter what I wrap up in once my back gets cold I cannot heat it up.  I have sat in baths where my legs, feet, hands and stomach are burning yet my back is ice cold, so no a nice warm bath doesn't do the trick.

I keep telling myself I should be dancing around, after all I'm here alive and kicking but somehow those thoughts aren't lighting up my mindset and the more I try to get positive the more of a failure I am feeling!

We went up to Scotland to see the puppies on Wednesday, I would love to bring them both home but common sense stops me.  Bear will be quite enough to handle but the personality of the little girl was wonderful.  Bear just wanted to sleep but Belle was wanting to play, nudging your fingers and wanting to taste them.  They are both delightful, only a week and a couple of days before hell breaks loose in our house.  Trying to remember how long it took to toilet train Lexi is evading my memory but then all dogs are different, just as long as he doesn't cock his leg against the furniture I think it should go okay.

The pain was well under control till my trip to Stansted and since my ribs feel like the corset round them has been pulled tighter and weighted down with another few pounds of iron, for some reason my left shoulder hurts and my neck is still causing problems.  Waking up is the worst time, especially during the night pins and needles or numbness in arms, my heels hurt for no reason and of course my shoulder and ribs.  Feel like I'm dropping to bits. 

I have heard some good news, H from the meso circle has done extremely well under Prof Vogl and the remainder of her tumour after surgery has shrunk, this is looking like a full remission for her and I pray that at last she can relax and stay well.  K is still on the chemo, although having a rough time of it.  A is stable with no change as well as C and L.  Its good to hear that everyone is well and gives encouragement to so many others who are starting this journey.

I was talking with a friend yesterday, she had breast cancer five years ago, her recent check up was clear and the relief she felt was obvious.  Yet she told me that she still hurts from the surgery and the restructuring, and even now she has days where for no reason she feels down.  The worry of the cancer returning is always in the back of her mind.  She was saying she gets sick to death of people telling her to feel positive and that others have said well I could get knocked over by the No 7 bus.  We agree, after all we are all on the way to death from the moment we are born but unlike the majority we know that we have a death sentence and yes we could get knocked over by the No 7 bus, but that just happens you don't know about it in advance.  Knowing you have cancer and it can take you at anytime is a hard fact, the worry of what we have to go through before our body finally gives up is frightening, more so with mesothelioma.  We already suffer with a poorer quality of life, we take extra care when around crowds especially those with colds and chest infections. 

I keep wishing I could be normal but I don't know what normal is anymore.  What it would be like to wake up on a morning, pull the covers back and spring out of bed.  To wake up and be able to stretch without hurting would be my no 1 on a wish list .. so if there is any genie's out there please grant me this wish.

On that note better go and find something interesting to eat, I had aromatherapy this afternoon and I can feel my eyes getting tired, if I don't move soon I'll be like the nodding dog on the backshelf of an escort.

Hopefully will have some more good news on the meso circle, it's always good to publish something nice. 

Also pleased our Lexi has got over her tummy problem the steriods worked only problem is that she is hungry all the time and looking for food.  No more treats for her, just pure dog food and complete at that.  She always had a digestive at bedtime and sits in the Kitchen by the tin at 10pm waiting for one!  It's heartbreaking saying no!  Just wish her foot would clear up but she has licked the skin that much there is a patch of 1 inch square that is red raw.  The skin is never getting the chance to regrow.  I keep putting socks on her but she keeps loosing them, a bandage is a no no as it can get infected just hope when Bear arrives she will be that occupied she'll forget about licking her foot and lick him instead!

Movement from the kitchen so will sign off .. hubby is hungry

Thursday, 19 November 2009

Up and Down

I decided to take myself off on one of these healing weeks, I actually managed the drive of 4 hours down the road and still felt good, a miracle in itself, although I did have company in the car.  The first night I was extremely shattered but the accommodation was that of the 1940's and I had a single bed which I duly fell out of during the night.  The building is said to be haunted, the haunting I had was my room mate snoring! 

I did find it tiring and sitting for long periods of time was quite hard on the side, Monday night I found I cat napped and so Tuesday the pain started building up.  We had a full energy healing session on the Tuesday evening, everyone laid on the floor for 45 minutes and the energies were given out (don't ask), as I laid there I felt my ribs get tighter and my chest feel constricted.  An hour later I found myself in bed tired but catnapping. The bed was uncomfortable which didn't help and I just started regretting being away from home.

Wednesday I still felt achy and the thought of holding out without sleep for another couple of days was going to do me more bad than good so having found a lift for my companion I jumped ship.

I was nervous as once I started that drive home on my own I would have to continue as there would be no coming back.  I've never driven more than 30 minutes on my own since the meso started and the thought had my adrenaline flowing like there was no tomorrow.  I pressed the button on satnav to get me back as I knew I wouldn't be able to map read and drive at the same time.  On the way down we had hit double round abouts with 1st exit and 3rd exits which ran into another roundabout, you get the picture, not where you want to mess up on then, I had travelled the M11, A14 and I think A120 once off the A1.  The Satnav worked out a total different route to the one I travelled down on and added an extra hour to my 4 hour journey, it took me all the winding roads to the A1. Then the A1M was shut at Junction 35, panic struck I turned onto the M18 heading to Hull and rang home, where do I go off the M18, head for Leeds on the M62 then back onto the A1.  did the Sat nav want to do that, no, thankfully because I rang home I knew he was right and the satnav was wrong!

I am so proud of myself for making that journey home, my side was tight, but the adrenaline kept me going and I arrived home 4.45 hours later, tired, achy but elated.

When you have something like this, debulked or not, those around you don't realise how dependent you become on them and to be honest you don't realise how dependent you become yourself.  I have given myself a gold star for making the decision to leave, I don't know whether I would have felt better if I had stayed but for once I knew I couldn't take the chance on staying and maybe the pain escalating because at the end of the day I was still the driver and would have had to drive home with the added responsibility of someone else in the car and the possibility of having a more pained journey.

Did the healing work?  Well I'll leave that up to you to decide.

Monday, 9 November 2009

Feeling Good

I can't believe it, these last 9 days have been fantastic, at last the corner has truly been taken and all I can say is wow!  You forget how good it is not to be tired, achy and waking up isn't that awful feeling which takes hours to go away.

I've been up, coffee, shower and work, even staying longer and longer.  Maybe I might get back into the habit of coming home for lunch then going back to work for the full afternoon.  At the moment I'm arriving between 9 and 9.30 then leaving about 2.30 to 3.00, by the time I get in I am starving.

We went up to see baby Bear and Belle on Saturday and it was great, they both nestled up and when I held them they would nestle under my chin and were quite contented to be cuddled.  Better make the most of these times as when they grow I doubt I will be able to cuddle them on my knee.  We also met rescue Sam, what a beautiful 11 month old he was.  Full of excitement, but so big .. he was bigger than Bear's Dad.  We met for the first time Bear's grandma and she was even bigger than Bear's Dad and I think Joe is really big.  Hopefully Bear will take after him rather than his mother's side! 

Of course we were with the rest of the family for most of the time, they are such wonderful dogs, especially for the size, they give you a warm welcome, your licked to death then they just settle down and are quite happy to lie by your feet or off on their own.  We brought back a towel with Bear and Belle's scent on, although we were covered in the scent of all the dogs, but the towel is hoped to start a bond with lexi where she starts to recognise Bears smell.  We were well and truly in the bad books when we got back and Lexi huffed us even more because we smelt of 7 different dogs!

On Sunday it was really cold and damp but off we went with Lexi.  Gary dropped me at the cross roads down the lanes so I could walk with Lexi for a bit before we met him over the fields.  I was quite tight chested and Lexi was pulling for England, I wish I had roller skates on as it would have been a lot easier.  When we met up with hubby my chest was finding it hard to breathe.  I think it was the severe cold and damp air that made the lung feel so bad.  Surfice to say that Lexi still had a good run in the field as well as her walk to the field but I was pleased when we jumped back in the Jeep to come home.  We still have some grovelling to do to make up though.

I need some sun .. but a holiday will be out of the question for quite a long time, once Bear arrives I still won't want to leave him for a good 6 months.  I would feel bad leaving him that young and also expecting the parents to dog sit if he wasn't fully trained would be so unfair. 

I didn't take any photo's of the puppies as the camera would have used it's flash and I didn't want to damage the puppies eyes, Ang has promised to send some down as her camera is a posh thing that can work in low light without a flash.  Hopefully we will be back up in about 10 days to see them again.

Next week i'm off on a 'trance healing' course at Stansted.  If nothing else comes from it I will have had a full week of relaxation, but will let you know what it is about when I get back.

Have nothing else to report, everyone in the meso circle seems to be doing well with the exception of 'K' who is currently on Chemo and I know you will all send your thoughts to him and his family. 

Wishing you all well


Thursday, 5 November 2009

Feeling Good

I wonder how many of you will be out lighting the bonfire and fireworks for family and friends tonight.  It's quite cold and crisp up here, and for the 2nd year running we haven't bought any fireworks .. at least the horses in the field next door will be pleased.  They were going off last night till quite late in the village near us and I was pleased that our Lexi was never affected by the noise.  My best friend had a dog who was terrified and for the full week had to be sedated to ease his fear.

It's strange, a year ago I was in USA having been cryoblated 2 days earlier.  Little did I know what laid in store with the major surgery.  At last my battle for the moment has come to a truce and I have to admit through all the pain and worry I am pleased I have taken the course I did.  I doubt I would be here today if I hadn't jumped on the plane last August, let alone go through the procedure again in November and top it off with major surgery in January.

These last 8 days I have really started to feel like a new person, not only does my body feel it's been through and come out the other side but my mind feels the same.  All the worries in the world about mesothelioma seem to have taken a back seat and I am back to me. 

We go and visit our puppy for the first time this weekend, I am really looking forward to meeting the cheeky chappy and his little sister.  I am also going to get a few tips on the website so maybe revamping some of the pages will be easier than I think.

I want to thank the meso circle for all the support, the funny emails and the fact that you know someone else is suffering the same and can share, I believe this all helps to fight what will always remain an incurable cancer, would love to say a curable cancer but lets face facts unless loads of money is poured into research we will still be in the same position in 10 years from now.  But who's to say that with all the treatments that are coming to life we can't keep on buying time and still be here in 10 to 20 years.  I heard the other day that someone who had gone through an EPP lived for 15 years and only died recently.  Who's to say that under normal circumstances (ie you didn't have cancer) but you could drop dead within the next 15 years with heart failure, so in my mind things are looking extremely good.

'K' from the meso circle is now on chemo, I think he is extremely brave going through the surgery then before he has chance to recover has started what is a tough regime.  So on behalf of everyone to everyone taking the needle of poison we wish you luck and hope that the side effects are tolerable to you all.  Remember to count upwards and not downwards, ie 1 gone rather than 5 to go, it helps with the mental side of things.

Wishing you all a good fire cracking night
Jan

Saturday, 31 October 2009

One Year Old Today - Wish I could say that for Mesothelioma!

I can't believe it's a year today that I started the blog site.  I put the hit counter on in July as I was curious to see if anyone read the blog and to my surprise you do.  I hope that through my journey of writing the blog it has helped at least one person battling this same disease.

On a bright note we turned the computer on this morning and had some wonderful photo's of the puppies, they do make you smile.  Can't believe how far both have grown and they are still only 2 weeks old, obviously Bear is the biggest .. maybe we should call him fat boy slim!  Here they are having a race, obviously not to mammy's teats as Bear is the runner up!


Considering I has been a busy week with interviews, lunches and my spa afternoon I can't believe how much energy I have.  Feel back like I did those few days in September before the radiotherapy.  Hopefully back on the way to recovery.  I wonder if I hadn't gone through the radiotherapy maybe I would have been a lot better these last few months, but I for one think the drain sites are important to get zapped and I am pleased that I did that.

I just want to thank you all for the support you have given me, especially the meso circle, it has been a tough year and I have come through it and for those out there debating on surgery, cryo, or chemicals or anything else that can be tried GOOD LUCK.  It is a hard decision on which course of action to take but follow your heart, your own instincts on what you should do are usually the best and at the end of the day it is your life and your decisions.

If the number's keep rising, which they will, money will have to be spent, as I told the interviewer the houses built up till the late 50's even some in the 60's have asbestos and lets face it how do we know what it looks like.  You do DIY, maybe your parents did, say dad rips out the old floor tiles when you were 5, the disease can stay dormant (say on the worst case) 40 years, 45 and you have mesothelioma.  It isn't a disease that can be traced to a certain date or time.  Maybe mine started when I was 5, I was 38 before any symptoms so it had 33 years to decide how it was going to attack my body.  I believe the disease will start showing up in even younger people a lot earlier, maybe the one off's of 28 will soon become the average age.  I sincerely hope not but you just never know. 

I am revamping the website as I have a few stories to publish and more on treatment but swapping pages over is baffling, Bear's mam is going to have a look when we go up next week as she writes website, and hopefully will point me in the right direction.  So please if you haven't already written something please get going, you don't have to go into to much details or give your own names, just how you think you got it, (if you know), when it started, how long till diagnosis then what treatments you have had.  They all help others and if we can help one other person with this cancer then we have done some good.

Off to work, thank you again for reading the blog, I do hope it has helped someone somewhere.

Thursday, 29 October 2009

ITV News

I don't know whether its just me or not but I haven't got use to this hour change.  I was up at 7.00, laid awake since 6, then pottered around.  At 8 I was blissfully having a shower when hubby suddenly appears bouncing up and down .... "It's the ITV" he says, so I take the phone and she tell's me I'm in the Northern Echo today and would I do an interview for them on mesothelioma.  Who can resist, you know my policy anything that gets this cancer a mention I'll do  (apart from run naked around woolworths that is).  We make a time then I realise I had better wash my damn hair, so had another shower.  The interviewer arrived at 11.00 and we did the business, as always you think it was terrible, wish I had said this etc but there's nothing you can do once the camera stops. 

I didn't realise that pleura plaque payment had been withdrawn again and as I said to the lady from ITV whether it turns out to be mesothelioma or not it is still affecting someones lungs and reducing the quality of life.  Don't get me wrong I'm not into this claim for everything society, if I fall over I fall over I don't think who can I claim big bucks off, but where asbestos is concerned money should be pouring in.  If I had been lucky to claim most of mine would have gone to research or helping others, but there are some people out there on the bread line who have to find money to get backwards and forwards for treatments, they still need to pay utility bills, mortgages, rents whatever, it costs money to live.  How our old aged pensioners survive on their pittance is terrible, but should they knock out a few kids from a few different fathers well the money just rolls doesn't it.

Sorry I always said I wouldn't get into politics but somethings make your blood boil.  The House of Lords who are looking to remove this compo for plaque would probably never have to worry about putting food on the table or travelling expenses .. sorry they claim them all don't they!

The interview was on ITV Tyne Tees and I thought it was ok, the phone rang instantly "You came across well" from a friend, so along as the point was made that's all that matters.

Once again mesothelioma should be in the papers as a discussion point, also the numbers diagnosed are much higher than expected and especially in the North East, no surprise there then, but interestingly women are higher then men.  Is it because the now know women can get it that they are looking for it?  Let's face it meso was never suppose to appear in anyone's chest (so originally thought) until your late 60's, I know that James Cook know look for meso as a disease to rule out alot earlier than they did 5 years ago so it's no surprise they are diagnosing more as they know what to look for and hopefully the signs of it before it's at the point of no life expectancy.

Going to do some studying, only wanted to let you know about the interview and of course the plaque debate.

Keep fighting all of you .. without us all doing so we could get sweeped back under the carpet and our cause forgotten about.  Money for research, money for treatments and money for those who need it.

Wednesday, 28 October 2009

Bear and baby sister


Aren't they just adorable!  yes you can tell Bear from his sister, he's the big fat one.  His breeder said he has learnt a new trick, his sibling does all the work getting the milk to the teet then Bear pushes her off and gets the reward.  Only 21 days before we meet him but at least he will know his name properly by then. 

I can't believe these litle darlings will get to be the size of a gentle giant.  There's nothing more pleasurable than lying down next to a big dog and stroking their fur, it's relaxing for you and shows a great amount of affection to the dog.

Have had a few busy days at work, probably the rest of the week too, it always bucks you up when things go right and you actually complete a job instead of leaving something half done because something else lands on your desk that is more important that what you were working on.

The weather has helped as it's mild but I'm missing out on the walks this week as Lexi has been going on a morning and the afternoons for me have been busy.  Tomorrow I'm taking my staff for an afternoon to the local spa, instead of taking them out at Christmas I thought they would prefer something different.  All they have talked about all day is which beauty treatments they fancy.  I'm just boring, I love a foot massage and would gladly sit in a chair for hours while someone rubbed in this and that, then filed my nails etc.  That to me is heaven!

If your weekend was as bad as mine I really hope by Monday you felt ready to climb that mountain again, remember it is normal, even without cancer, to have an off day and everyone has them.

Monday, 26 October 2009

Weekend of Pain

What a rotten weekend, the weather was terrible and I think my body was in tune with it.  Between stomach aches for no reason, Gary has become a dab hand at making water bottles, to be fair the stomach aches have been all week!  Then the strange stomach feelings on a morning, coffee just doesn't taste right even if I postpone having one for a good 15 minutes after surfacing.  Sunday my chest felt tight and all I felt I wanted to do was take a massive breath of oxygen but I know that wasn't the problem.  Then the iron bar across my back and just feeling totally crap.  I had high hopes of feeling better after the operation but it seems as I've recovered from being butchered all the old signs of this bloody cancer are still here, maybe they were still there but underlying as the brain was dealing with so many other pains.  All I know is that there seems no respite for me.

I took a sleeping pill Wednesday night as it was two weeks without decent sleep, and to make up I took another one on Thursday.  Friday I was out of sorts and blamed the tablet .. to much unnatural sleep .. but the out of sorts continued to pain and discomfort.

I was worried yesterday, at one point I thought of going to A&E but seriously what can a hospital do for you when you know what the problem is, I have tried stomach tablets without success, pain-relief does work on the pains but not on the aches and for my chest what ... I nearly went to my mams and took a swig of her oxygen machine, but in my heart of hearts I knew this would do no good either.

I am hoping this is just a one off week but I had sweats last night, the dead rabbit type.  On a high note I have managed to put on weight.  I got out of the shower and noticed for the first time that my boobs don't resemble dried up currents but more like grapes, and my arms have filled back out.  I just need to be careful I don't get a much of a stomach or I will panic.

Have decided to go into work today, at least it will keep my mind occupied and I might even get some work done which makes me feel a little better, recently feel like I'm getting paid for doing nothing and that doesn't rest easy in the mind.

I do hope everyone else had a better time of it than me, I just can't understand why I always am ill and here I am debulked and should be in respite.

Hopefully will publish some photo's of baby bear later on, he raises a smile.  He is certainly taken after his name, his breeder and I both think he's been eating too many pies, he's twice the size of his baby sister.  3 weeks before we can hold him.  I do hope that I am doing the right thing although I know if I should pop my clogs, he may miss me but Gary will certainly be a good dad.

Monday, 19 October 2009

New family member

The puppy was born on the 17th and although traumatic for mam, she had two puppies survive, we have the boy, first male dog I have ever owned.


So here is the picture of him at 2 days old

What an adorable little boy he is ... I just hope Lexi will love him as if he were her own.

I can't wait to hold the little fellow but we will have to wait until he's 4 weeks and mam won't be too upset about him being manhandled by strangers.

I just thought I would share my excitement with you, makes a change to see new life instead of the gloom and doom of this rotten illness.

We went walking again yesterday and instead of getting better with the breathing I'm finding it harder each week!!  So much for expanding the lungs and getting them to work, I expand mine and want to collapse in a heap on the floor!

There is this old crooked tree and I really want to be able to get onto the first branch and sit on it .. kind of my challenge.  Gary tried the one foot in hand routine but I just wasn't able to pull myself up and throw a leg over the branch.  I guess not what one should be doing nearly knocking the door of 50, but I will try again.  If I manage it I will want a photo to prove I did it!

Have just missed out on a sale of a house near us which backs onto the fields, I didn't even know it was for sale .... keep hoping that the sale will fall through, not very spiritual of me I know, but it would be perfect to walk straight out, across a wood and into the fields.  Thinking of Bear when he arrives!  As I'll have to help him in and out of the car.  When he's full grown (upto 12 stone) I'd be lucky to lift his front leg let alone his whole body!!

As you can tell, I have decided to ignore my fears and worries and take hold of life at full speed again.  Obstacles are there for us to overcome and after emailing Debbie and vise versa we have overcome so many between us that we are both up to take on whatever this disease will throw at us.  I'm sure many of you will agree with me on that one.

I heard from one of mam's carers that a friend of a friend has just been diagnosed and he is hiding his head in the sand and talking about Switzerland ... Not the right way to think.  I do hope he will make contact as there is so much more out there than when I was first shell shocked with the news on meso.  So to anyone first coming to terms with this kind of news, have your few days of shock, temper, anger but don't hide from it as it will be harder for your family and friends to draw you back to the here and now and seek treatments which can help you.

Enough of that, in a happy mood, although Gary is under the weather, a cold I think, lucky for me I had the flu jab!  Don't forget yours!

Jan

Saturday, 17 October 2009

All nerves again

Here I am Saturday morning looking out on a nice clear beginning of an Autumn  Day and wondering how Bella the mother of our potential puppy is doing.  She hasn't managed to go into labour yet so is on the way to the vets.  My stomach is turning, as she is a beautiful newfoundland and the thought of her having to have a section is terrifying.  I bet her owner is also worried and I'd rather be in my position than hers.

These new pain pads are working extremely well although still feel sickly on a morning, trying the metroclop but still feels crap.

Have decided to put all worries away regarding the pending PET Scan, if something turns out to be a new growth I will have to deal with it then, pointless putting more pressure on my body by worrying about it.  The last week has been filled with worry but as I look out onto the garden, the sun is shining and to be honest I am in borrowed time, I just hoped it would lend itself for at least 5 years before worrying about new growth.  It's only 9 months since the operation and if the scan is right something was building up in July.

I know from past experience that I should be dashing in all trumphets blowing and get something done but radiotherapy could give a distorted picture of any hotspots so patience will be mine this time.  (That's what I'm saying at this moment in time!)  The only thing that makes me worry is the return of the kidney area pain, but that could be pressure from the inflammation, I am just talking myself out of worrying, yes you bet I am.

The problem is I can't fly and so cryo would be out of the question unless Dr A will come to England and use someone else's equipment, but I don't know whether that would be allowed.  There is also the option of cyberknife now in England.  I hope I don't need to do any of this but you see your mind never stops when you hear there could be a problem.

Maybe it's stupid to look for another dog, especially when it's my choice of a Newfoundland and not Gary's of another German Shepherd, but then if it is the dreaded disease, then it could take a couple of years to get as bad as before the operation..... Problem with meso is noone can give answers.  My headaches could be toxins, my sickly stomach (like 07) could be toxins, my kidney pain, don't want to think about it!

I hope where ever you are today, you have this beautiful sunny crisp fresh day and make the most of your weekend. 

Hopefully by tonight we'll hear how the dog is doing and whether we have a new puppy to look forward to.

Wednesday, 14 October 2009

Out of the Blue

What a wonderful surprise I had the other evening, Dr Owens left a message for me to give him a ring and have a catch up.  It's 5 years since he first met me and removed that curtain from my lung.  It will be great to catch up and see how he is doing.  I know he moved more into research and hearts than lung so I'm sure I'll have an interesting hour.

Good news too, I have a chest physician and he is at our local hospital, plus he has dealt with mesothelioma previously, so things are looking up.

We have had to source a new puppy and spent Saturday driving up to Scotland but met the new family.  Daddy bear,mammy bear and auntie bears!  Hopefuly mammy bear will give birth this week and in 4 weeks we will get to see the little bears. 

Having been travelling on Saturday, Sunday was a total wash out, I ached and I was tired.  We were due to go out for lunch but I had to call it off as I felt terrible, although well worth it.

I have also got some new painkillers from my chest man, they stick on like plasters and are really working well especially on the kidney back area where pain has started to become a drag.  (My warning area in the past of something wrong). 

I heard that a friend went for chemo and had to be cancelled as the B12 and folic acid tablets hadn't been put in place.  Can you imagine how that person felt.  Keyed up for chemo then postponed .. I'd be relieved to miss the needles but more on edge because of the delay.  Why the NHS still can't get things right is beyond me.  Too many Chiefs and not enough indians or too many indians and no chiefs, either way it is unacceptable. 

Jan

Thursday, 8 October 2009

Updates

Dear All

Have had quite a busy time and feel guilty as I haven't updated the website or the blog recently.  I have received some wonderful information that I have to transfer on the website, alternative treatments and stories from the meso circle.

The Carers day went well although some of what we should get in way of doctors, nurses, compassion etc doesn't happen in the real world but does look good on paper.

I met a gentleman who is only on mistletoe and it has worked wonders on a tumour that had grown under his skin, his oncologist was impressed and surprised with the results.  The gentleman was having it done through the NHS.  I am waiting from him to email with the details of how he managed this and hopefully will get that posted.

I met another gentleman who was diagnosed in July and told he wouldn't be seen until End of November, thankfully he came to the day and contacted meso uk who have taken up his case.

There was plenty of room for more of us patients but I guess unless you live near this area it is far to travel but where ever these are held someone always has to make a journey.

I hadn't noticed until today but a message has been left by a lady representing accuracy on the blog, have emailed back for information.  This is the treatment of cyberknife and is now here in this country.  As soon as I get some more information that will go on the website and a link from here to it (if I work out how to do it).

I am also excited ... yes a CHEST PHYSICIAN has agreed to see me!! At last I might just have a doctor to check me over every couple of months and make sure I'm doing ok.  Whether trust will develop I'll have to wait and see.

I did an interview for the Northern Echo on Tuesday afternoon discussing the lack of knowledge on mesothelioma and the need for more understanding, treatments made available, research and of course NCARD.

It was good to see a couple of guys from the EPP club too and nice to put faces to names from the meso circle.

Debbie looked well although having to battle again for yet another oncologist .. when will this profession take heed and realise that we are the victims and shouldn't have to waste our life battling.

It was also reported that in a conference in plymouth a person said that  "meso is an old man's disease", whether it is or isn't shouldn't come into it, whether your 40, 50, 60 or older we've paid our dues now give us our life back or buy us more time.

I liked the point that we "The patients" are infact the employers of the professionals and without us they wouldn't have a job, try saying that to your specialist who isn't taking any notice of you or your predicament!  Blacklisted comes to mind.

I have promised myself a couple of hours on Saturday to update the web with my new info, so if you have any of your stories ready by then please send them to me asap on jan@jansjourney.co.uk

As always wishing you all well and keep that china man at bay

Jan

PS  'K' is doing remarkably well and has been out and about, although tiring, well ahead of me at this stage in his recovery.

Thursday, 1 October 2009

Macmillan Site

Hi guys

Just a quick note, I haven't been on the new look site for a while as my link didn't work then I forgot my user name! Anyway I finally got on last night as hubby watched the football, and what a complete shock it was.  I struggled before understanding how to email, whether you had to hit private message or just reply and am even more confused now.  I sent a reply to a lady and her sister emailed me today as it went to the wrong person, how terrible do I feel as the lady it was intended for had recently found out her husband had meso.  The recipient most have thought a mad woman had been in touch!

What do you all make of the site?

By the way feeling much better, at last the days are sunny!

Tuesday, 29 September 2009

Tribute to Pamela

Today was my 49 year old cousins funeral. I met up with an old friend who was still every much apart of my cousins life and it was good to hear that they were as close before her death as we all were when we were in our teens.

We forget about other's daily problems when we are battling with survival ourselves. I found out that my cousin dreaded getting old because she suffered badly from arthiritis and her back gave her a lot of pain. Pain is a very wearing and real problem. I discovered she was using heavy duty painkillers to survive, she still worked but also suffered from bipolar and other various compliants, everything other than her heart. Pam was a hippy and even at 49 I doubt she changed. I was lucky to see her when I was ill, I honestly thought how well she looked and didn't realise what she was going through, health wise. Yet I say the same about myself, quite often people use to come up and say "Don't you look well", it obviously must run in the family as usually that was when I felt my worst!

One of my brothers commented on the remark about her wanting to give up before she was too old because she couldn't stand waking up each day with pain. We who have cancer and suffer from a lot of pain feel that that's our lot and we have to get on with it, and it is wearing but I have to say I haven't wanted to die to be away from it .. well not yet anyway, although I do look forward to a day when I jump out of bed pain free!

On a brighter note I have been asked to do an interview on mesothelioma for our local paper. It all started with an article in the paper regarding a Mr Clark who died of mesothelioma. The reporter asked for anyone to respond regarding the disease. One of my friends emailed and told her to read my website and from there the interview date has been set. I can only hope something good comes out of bringing mesothelioma to the forefront again. When you think about it, mesothelioma only hits the papers usually once a year because of Action Day, so any opportunity to keep it regularly in the press can only be good.

I wish there was a miracle out there for every type of cancer, can you imagine how great it would be if we could snap our fingers and be cured? I heard such a sad story the other day and I thought I'll share it.

I lost dad's burial plot certificate so thought to ring the funeral directors. The lady was extremely helpful and we got chatting. Somehow before the end of the call I learnt her mother died young of cervical cancer, her father of bowel cancer, her brother is fighting bowel cancer which has now attacked his liver. He is the only family she has outside of her own daughter. Her brother works abroad and the sister contacted his oncologist because the brother was feeling ill, he organised a scan out in Asia and sent it home. The oncologist as told her to inform him to get chemo out there as he would be better off than coming to England for it! Once over this was the best country in the world for medicine and treatments. So it's not only us meso sufferers who are swept under the carpet (so to speak) but others as well. I was shocked when she told me this, like most of you reading this, we only ever want to be treated at home. Yes I know I have travelled to the States and some of you have or are travelling to Germany but really all we want is to have these options here.

Cancer care or indeed any type of care should be the best you can possibly receive, every tax payer and employer pays a small fortune into the NHS and yet it can't support us. I still say if they legalised drugs then all that missed tax would keep the NHS going for years to come and to be blunt in profit. How much does it cost to treat a heroin user or a crack head, yet most don't work and only cause others pain by stealing and most of the time get better treatment than those who have worked and contributed. It makes my blood boil.

My rant for the day, hopefully I will feel differently by the time I do the interview otherwise I might get my windows put out!

So my thought for today is to think of others who suffer pain every day too and feel glad to still be breathing and able to get up on a morning, even if all I do all day is complain!


Jan

Sunday, 27 September 2009

Life without or with mesothelioma

It's Sunday and again I woke up feeling sickly, had a few dizzy turns again yesterday and Friday and not sure whether BP is going down again.

I'm putting the sickly feeling down to the hernia after the operation, how envious I feel of people waking up each day and not having an ache or feel sick etc. I know I shouldn't complain as after all I am alive and once I get the first 2 hours over I seem to feel a lot better. The couple of days before radiotherapy I had 3 mornings of feeling normalish - I say normalish because the bones still ached and my kidney area was tender but I felt good. I think I said I smiled for those few mornings which gave my hubby a near heart attack.

A few of my meso cirlce are going to submit stories for the website and I am so pleased at some of the responses I have had. I suffered worst case scenario (apart from dying that is) and I am sure many of you will not have had such a rotten deal, at least I hope you didn't.

It's been agreed that I stop Pilate's and on Friday, I had my back manipulated to try and release some of the tense muscles. That at least took some of the strain out of my neck.

I don't know what my next project will be but I need something to keep mesothelioma in the lime light, if we don't keep at it the government will finally sweep us all under the carpet and where will that leave the generations to come. Asbestos won't stop killing for years to come yet, how many houses still have it sitting in their lofts, soil pipes, between some walls etc. We are more into DIY and over the next 20 years I believe this disease will be even higher because houses have been worked over by the last two generations.
I took one of my brothers to help pick my fathers head stone, it's nearly 5 years and we still haven't put one on his grave. How terrible is that. Yes I can use the excuse that I have been going through treatments or recovering all this time but I should have found the time to do this important thing. I know when I die my ashes will be on the top in the spare lounge next to Jagar's and Tyke's so I have know worries unless hubby remarries and the new wife wants rid, then I guess I'll be planted in the garden along with my girls. Fingers crossed that is something that won't happen for a long long time.

One of the meso circle is off on Tuesday for results on his recent CT, I do hope he is still in remission and I know what will be going through his head right now. This will probably be one of those wasted weekends spent worrying about it.

'K' is home and under his wife's care and concern. He is suffering badly from pain and I feel for them both, being their myself, it's not a nice place but unfortunately we have to battle on. Survival really is a hard way to live daily but when you have so a noxious cancer like Mesothelioma every day is a survival day.

My Cousin, who died, apparently guaranteed a loan for someone she barely knew, he took off with the money and the loan shark came seeking her out. We believe that this caused her to have a massive heart attack due to the worry. My uncle tells me the letters he found at her house were extremely unpleasant and in his state of shock, found them extremely worrying too. I can't believe she was such a soft touch or didn't share this burden. Here we are fighting to live and she has to die over something that should never have happened. I hope the guy who took the loan suffers for the rest of his life as my cousin was such a caring person and in this case too caring.

I wanted to be bright and breezy today but when we went for our walk we found that someone had tried to smoke the badger den out in our woods! Why is man so cruel! That put me in a more sombre mood and I found myself thinking about what a rotten world we live in because of a few.

On that note I'm going to finish writing today, at least I've cleared if off my chest!

Please give a thought to all those that are suffering, positive energy and all that.

Wednesday, 23 September 2009

Mesothelioma - Silent and Alive

I was speaking to a lady today and she asked me how do people find out about mesothelioma or where to really look for information about it. Say if you were told someone had asbestos cancer, and I thought about it .. you do need to know the name mesothelioma to find out the information otherwise where do you look.

That's why I've called this instalment Silent and Alive, it is a silent killer with an unfamiliar name to those looking for it. I still think it should be called or classed as a Chest Cancer and then maybe it could be located easier.

I have taken that step upwards and finally feel that recovery is well and truly reaching the end, admittedly I have upped the morphine but I feel so much better in myself.

My hubby was over the moon as I am smiling again and he managed to pack me off to work again this week. I was pondering on leaving work because I felt I was being unfair to those I work for and for the people I work with, but a few minutes back in my office and all thoughts vanished.

I have also had good news about 'K', he is now home and ahead is recovery for him. I don't relish the thought of what he has to go through but I do know he is ahead of the game. 'K' didn't loose his diaphragm which means he won't get those annoying pricks in his side every time he turns his body.

I am hoping I will receive a lot of information from you all to add to the website, I may have to rename it to Mesothelioma - Our stories but until I get plenty I will leave it as jansjourney.

I do hope that I have helped others in bearing my soul, in a strange way it helped me to get through things, especially by keeping the blog updated.

I wish you all continued success in your battle with meso and will continue with the blog, hopefully now in a more upbeat way.

Monday, 21 September 2009

Mesothelioma Website Alive and kicking

Finally, after blood, sweat and tears the site has launched today. I still have a few little problems like the feedback doesn't work and I haven't the faintest how to fix it so will change the page, but I can't get back on at the moment. So if by the time you visit it may be fixed.

I would hope that some of you will send me your stories, I would really like to post them. The more information in one place the better it is.

Don't forget anything you have tried and tested in your fight with mesothelioma I would like you to email it to me so I can add that to. (Providing I get to work out how to change things)

I hope you will visit the site and I hope it may help you in some way.

site is http://www.jansjourney.co.uk/

my new email for your comments is jan@jansjourney.co.uk

All I need you is to give me your comments!

Forward without reverse

It's been a strange week, I haven't been to work at all which is odd for me.

I have discovered when I'm 50/50 I can't be bothered with work yet when I'm really ill all I want is to go to work. Obviously I am the one who buries her head in the sand. As at work you haven't time to worry about what's happening with yourself.

I don't know whether I would have felt better if the radiotherapy had been set up any differently on the 3rd day and I can't exactly find that out. My kidney area has been aching a bit and I have taken extra morphine.

I have heard that 'K' has no drains in and his lung as stuck well to the chest. Also Mr Edwards has been busy lately with more operations. Although his expertise will improve more the more operations he carries out there shouldn't have to be these drastic measures. Mesothelioma shouldn't be out there.

Why did the powers of be have to lie about the amount of new cases that would occur back in the early 70's! It seems more and more of us are being diagnoses.

It's 9 months for me and I intend to be around a lot longer, but the more you hear about how it returns etc it can unnerve you. It has me.

We need these drain sites back on the radiotherapy to do lists after any type of chest opening and not be left to chance that it may or may not stop the mesothelioma growing up through them.

At least my headaches seem to have sunken into the back of my head, one anti - inflammatory on a night and what a difference it makes not waking up with a rotten headache!

I went to publish the website yesterday but the thing wouldn't load so am in a pickle. I may have to re-write the whole thing in a different programme, hopefully someone will be able to help, but not this morning as I'm going to the docs for the results of my Blood MOT.

I had an email for Dr Abtin, after sending him my first scan of the operation, his comments were
"Great Surgery" as a outsider to my current procedures I thought this very nice of him and sent it to John.

It's carers day at Newcastle on 3rd October, I hope many of you will be there.

Enjoy your week and I'll keep you posted over the website.