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

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

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.

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

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