Press Release

Hi Tracy
I am so sorry to hear that Des is so poorly. It is good news to hear that Macmillan have been so supportive, Lynne said that she will give your Mum a call.
You are obviously worried about your Mum too, it may be worth having a chat with the Macmillan or District Nurse to gain the extra support you all need.
Please feel free to call either of us if you need to.
Hope to hear from you soon
Love Diane

Posted by Diane on Monday,23.06.08 @ 23:57pm | #775

Hi Diane/ Lynne just wanted to tell you how my lovely step dad Des Dougherty is doing since he was diagnosed with Meothelioma in December 07.
He was still able to play bowls and go away on holidays up until the past month or so when he has dramatically gotton worse. He has lost his appetite, lost over 2 stone in weight, needs a scooter to get around or a wheelchair. His breathing isn't very good and he has been sleeping most of the day.
It is so very sad to sit and watch the person you love suffer with this terrible disease.
It all seems to be happening very quickly, you sit and hope he has a good day but that good day doesn't seem to come anymore.
Macmillan come in once a week to have a chat and do anything that is needed and they have been very caring.
My mum Val is doing everything for him and trying to keep her spirits up but i have noticed in the past couple of weeks that she is looking very tired and drained. It is so hard for them to cope with this and none of us know what to expect next.
I just wanted to write all this down as i am struggling to cope with watching this happen to such a lovely lovely man and watching my poor mum cope.
They are attending a course at the Hospice every Friday for few weeks which hopefully will help them both to relax and talk.
If you have any words of advice for them please can you let me know.
Hope your both well , and see you in Hyde park in September.

Kind Regards
Tracy

Posted by Tracy devoil on Thursday,19.06.08 @ 21:50pm | #774

Hi Karryann
Welcome to our messageboard, I hope that you find it useful.
I'm so sorry that you and your family have had to endure this dreadful disease, although it sounds as if your Dad is doing really well!
If there is anything you need please do let us know.
Best wishes
Diane

Posted by Diane on Sunday,15.06.08 @ 23:11pm | #773

hi
my dad was diagnosed aug07 age 52 with mesothelioma his first lie of chemo was vinobine which didnt do anything he is now on second line with alimta his last scan showed that the meso hadnt grown since 6 months ago so fingers crossed alimta will give us much more time
karryann todd
essex

Posted by karryann todd on Saturday,14.06.08 @ 20:40pm | #772

Hi Cherry
We were saddened to hear about your Dad.
It is difficult enough to have to deal with your loss, without all the unnecessary problems you have been encountering with the insurers.
We will be making some enquiries to try to help you & your family.
If you would like to contact us directly, we would be more than happy to help.
Best wishes
Diane & Lynne

Posted by Diane on Friday,13.06.08 @ 19:50pm | #771

Dear All,

My father died from mesothelioma in January 2006. It came as a great shock to us as he had been relatively fit until the preceding November. He worked in the shipbuilding industry all his working life and was employed by Vosper Thorneycroft from 1970 until his retirement (late '80s). He was general manager there and very much a "hand-on" person. The insurance company are trying to avoid paying any compensation for his terrible death by claiming that we cannot prove that he was exposed at VT as we have no witnesses to his being present in areas where he could be exposed to asbestos. His name was Malcolm (normally known as John) Pledger. If anyone can help us by confirming that they had seen him out and about in the yards and on the ships this would strenthen our case greatly. Similarly if any relative of yours has been affected and worked for Vosper Thorneycroft if you could contact me I would be very gratfeul. Thank you for reading this and for any help you can provide.
Cherry.Bartlett@malmhouse.co.uk

Posted by Cherry Bartlett on Thursday,12.06.08 @ 12:35pm | #770

Dear Lorraine and Family
I am so very sorry to hear your news.
Your Father was a lovely man and although as you said, he was only well enough to attend the Portsmouth meetings for a short while, he was great company and he will be sadly missed.
If there is anything you need, please call us at anytime.

With love from
Diane & Lynne xx

Posted by Diane on Friday,6.06.08 @ 00:11am | #769

It is with regret that I have to tell you that my father Stanley Carter passed away on 28 May last. Although he was only diagnosed with mesothelioma in January last and was only well enough to attend 2 meetings in Portsmouth I would like to thank you for the support and help that you gave him and of the ongoing help the family are receiving from Richard at Larcombes.
Many thanks Lorraine Bullen

Posted by Lorraine Bullen on Thursday,5.06.08 @ 22:11pm | #768

Dear Gemma
I just wanted to say how sorry we are to hear about your Dad.
It has been such a difficult time for you and you have been so very brave.
We know how you must be feeling right now, if you need us for anything at all, you know where we are.
With love from Diane & Lynne x

Posted by Diane on Monday,26.05.08 @ 15:45pm | #767

Hi Everyone

Just want to thank you for your lovely responses to my last post. Im sorry I havnt been on again since but I have been very busy caring for my Dad. He went downhill very quickly after he was told back in February, and Im so sad to say that he passed away on Friday morning. He was very out of it towards the end, but he was in a lovely room in F Ward of QA with a big window and his radio playing. He was admitted on the Saturday night before and I was with him every day onwards. I saw him on the Thursday and he managed to tell me he loved me, and I held his hand whilst he fell asleep. Apparently he never woke up properly again. We got the call he was going Thursday evening and raced up there, and I was with him for 10 hours. In the end though I think he was waiting till I left before he did, so I went home about 4am and he slipped away. I loved him more then anything in the world, and Im now staying so busy so that I dont have to think about it. I cant yet, Im not strong enough to deal with the memories yet so they will stay tucked away until Im ready to go somewhere quiet and have a good old chat with him, even though I wont be able to hear his answers. Just wanted to let you know because he was an amazing man and the best Dad in the world and I want people to know about him.

Gemma

Love you Dadsur.xxxxxxxxxxxxxxxxxxxx

Posted by Gemma Clarke on Sunday,25.05.08 @ 19:07pm | #766

WELL DONE EVERYBODY!!!

ACTION MESOTHELIOMA DAY 2008 -THANK YOU

Just to say thank you to everyone who contributed to the Balloon Release for Action Mesothelioma Day, we were over whelmed by your support.

We have raised £6000 for mesothelioma research!!!

We couldn't have managed it without you!

Love Diane & Lynne x

Posted by Diane on Thursday,17.04.08 @ 23:47pm | #765

I would like to thank both Lynne and Diane for making my Dad's day today. They gave up their time (Easter Sunday) to come along and surprise my Dad at a family gathering to celebrate his 70th birthday. He had no idea that they were invited and was overwhelmed when they walked in, his face was a picture. I can't thank them enough for the support they give my Dad and today only goes to prove how wonderful and how dedicated they are to helping people through such difficult times.

Posted by Sharon Thomas on Sunday,23.03.08 @ 23:06pm | #764

Dear Linda
I am so sorry to hear your news, you have both been so brave. Terry did so very well to stay with you all for so long.
We are thinking of you and your family, please let us know if there is anything you need.
With love from Diane & Lynne x

Posted by Diane on Wednesday,19.03.08 @ 11:24am | #763

Hello everyone, just wanted to let you know that my wonderful husband Terry died 12th March. He put up a long struggle right to the end (nearly 4yrs from diagnosis) I & my children are very proud of him. To anyone else going through this terrible disease my thoughts & prayers to you. I will still be available to try to help anyone if I can. Love & God's blessings to all. linda

Posted by linda woodland on Tuesday,18.03.08 @ 23:40pm | #762

Hi Gemma,
I know exactly how you feel. Please do not hesitate to contact me if you need to.

It is difficult to watch someone suffering this awful disease and try and consentrate on your own daily living and things.

Your Dad must get Macmillan on board and make sure that he is fully supported if he lives alone. His GP should also been involved in making sure he has the care and support he needs.

Treasure your moments with your Dad and you offering him whatever support and time you have will be the best thing you can do for both of you.

You must try not to worry to much or carry everything on your own shoulders. I felt the same as you, that I was the parent, and my parents were the children.

Please keep your chin up albeit very difficult.Like you, all I kept thinking about was my Dad and what it was going to be like when he died and preparing for the funeral. If you can, sometimes it helps to discuss these things together and preparing makes it easier when the time comes.

You say your Dad is confused, my Dad became confused in the last 2 weeks of his life, but we were able to discuss everything he wanted in that time and so I felt happy that I had done for my Dad, the last thing I could do.

Hold on in there, Gemma, it is very scarey and my heart goes out to you.

Diane and Lyne are brilliant, they helped me a lot when my Dad was very ill and before and after his death. They are brilliant and what's nice is they have first hand experience of it all. Please call them and discuss your fears, they will help a lot. You can also contact me anytime and I mean anytime.

I send all my love to you.

Maxine xx

Posted by Maxine Lettin on Sunday,9.03.08 @ 22:10pm | #761

Gemma, we know exactly how you feel, you know that you can call Lynne or me anytime if you would like to chat.
Love Diane

Posted by Diane on Sunday,9.03.08 @ 17:28pm | #760

Hi There

My Dad has just been diagnosed wih having mesothilioma, and I am so scared. He lives alone and really only has me for support. Im feeling very scared and alone and so sad. All these awful thoughts of his funeral and how its going to be when he is gone and Im not able to pick up the phone and speak to him whenever I want, just keep running through my head. Its like I have become the parent and have to deal with all his cleaning and mail etc because he us just so vacant lately. Anyone out there who I can talk to who understands, please get in contact.
Gem
xxx

Posted by Gemma Clarke on Saturday,8.03.08 @ 21:50pm | #759

Hi Raquel, my thoughts are the same as Dianes - infections can cause all sorts of things - keep on asking - it is your right. thinking of you all. linda x

Posted by LINDA on Monday,3.03.08 @ 23:28pm | #758

Hi Raquel
I am so sorry to hear about your Dad.
I am by no means a medical expert, but confusion like this can be caused by infection.
Keep asking questions at the hospital, don't be afraid to ask to speak to your Father's consultant.
Please call either me or Lynne on the numbers below if you need to.
If anyone would like a copy of the new patient's copy of the Mesothelioma Framework booklet (what treatment sufferers should expect), please let us know.
Diane

Posted by Diane on Sunday,2.03.08 @ 23:45pm | #757

Hello, just wanted to update you on my Dad. He had his pleuredesis on Monday as planned but unfortunately got an infection causing his middle lobe to collapse. He improved enough to be moved to our local hospital on Friday but I am very concerned. He is very disorientated and confused. He is refusing food and can't pass urine which means they have catheterised him again. He had such good care at the first hospital as he was in a high dependancy unit but it feels like he has been cut adrift now. Can't seem to get any answers from the staff.Has anyone had experience of this? We are barely over the first hurdle and struggling already!

Posted by Raquel on Sunday,2.03.08 @ 20:46pm | #756

To everyone who has posted on this site - my dad, Stan Thomas (star of Meridian!) was diagnosed with mesothelioma in January 2006 and thankfully is still with us.

When Dad was first diagnosed I spent ages researching the internet and spent every evening for about three weeks crying my eyes out because I thought my Dad had just a few weeks to live

Although this is such a cruel disease, we have never given up hope,if he is positive then we are positive. We take each day as it comes, we make the most of every minute of every day. Obviously he has good days and bad days but at the moment the good outweigh the bad. He is still quite active and walks to school two afternoons a week to collect his 7 year old granddaughter (who idolises him). He attends the Southampton Meetings of HASAG and values the support that he receives from Diane and Lynn.

So to everyone who has been affected by this awful disease, remain positive, make the most of every minute of every day and good luck to you all.

Sharon xxx

Posted by Sharon Thomas on Wednesday,27.02.08 @ 23:34pm | #755

ACTION MESOTHELIOMA DAY
Just to say a big thank you to everyone who attended the Balloon Release and meeting today (and also to those of you who contributed but were unable to attend)and helped to make the day a wonderful success.
Many of you will know that this is the first large scale event we have organised and to say that we were apprehensive was an understatement!!
We are really grateful to you all for all your love and support

Love Diane & Lynne x

Posted by Diane on Wednesday,27.02.08 @ 22:37pm | #754

Looking forward to seeing as many of you as possible for Action Mesothelioma Day tomorrow. Don't forget the balloon release (by Fred Dinenage) is at 12.30pm followed by a public meeting. All monies raised will go directly to Mesothelioma research. We aim for better treatment and care for this dreadful disease, so every penny we collect will help to achieve this.
You can download a sponsor form from the link at the top of the homepage.
Please help us make this really happen!!
See you there
Lynne and Diane

Posted by Lynne on Tuesday,26.02.08 @ 17:15pm | #753

To Raquel, I am so pleased your Dad is now having the fluid drained and talced as I am sure that will help. I thought it may help you to know that hubby managed to reach Valentines and we were hoping to celebrate! Sadly I was 50 miles away sitting with my Mother in hospital who died later that night. She was in her 90's and died peacefully, but can you imagine how mixed up I am with all of this.

To Sue my hubby was diagnosed with mesothelioma in Nov 06 and thankfully he's still with me, so there is hope and everyone must try and think POSITIVELY, but it isn't easy.

To Claire & Rebecca, I was so sorry to hear of your loss and having just had my own Mother die, I can understand all your hurt and anguish at losing a parent. My Mother may have died through old age, but it still hurts like mad and I have found emotions that I had forgotten existed. I know she is now at peace and after Thursday's funeral things will settle, but I now have a good idea how hard it is going to be when I lose my hubby to Mesothelioma.

To both of you, try and talk to anyone, or everybody you can, Counsellors, Vicars, family, friends, anyone who will listen and understand, because it does help in some small way.

Death seems to be looking over my shoulder in all ways right now, and I just hope I have the strength and courage to cope with my Husbands death from meso when it happens.

Thinking of you all. Donna

Posted by Donna on Tuesday,26.02.08 @ 07:20am | #752

Raquel

We will be thinking of you, please do not hesitate to call or e-mail if there is anything we can do to help.

Love Diane x

Posted by Diane on Friday,22.02.08 @ 11:24am | #751

Dear Claire
Nothing I can say here would convey the depth of our sympathies for the loss of your Dad.
You and your Mum have been so brave and strong, please know that we are always at the end of the telephone and our support continues.

Love Diane xx

Posted by Diane on Friday,22.02.08 @ 11:22am | #750

Hi everyone. Just wanted to let you know that my Dad will be going into hospital next week for fluid drainage, possible glueing of lining and biopsies to confirm axeactly what we are looking at. I will be really suprised if it is not meso. They will also check his windpipe as Dad has been struggling to cough up really yucky stuff this week. We are all really nervous and don't know what will happen next. Still at least we are nearly over the first hurdle.Anyway thanks for your support. I will let you know how we get on. Sending out love peace and positive vibes to you all.
:o)

Posted by Raquel on Thursday,21.02.08 @ 20:23pm | #749

I have been reading through the messages and felt the need to post one last comment on this terrible life renching disease for everyone surrounding, my dad was disgnosed on Nov 15th 07 after complaining of a sharp pain in his back, we went through the procedures of the biopsy VATS etc (not chemo as was far too advanced) but as the tumor was far too advanced there were no other options left, i looked into everything possible i would have had him dancing chanting naked in the garden if i thought it would make a difference to his life but we had to face facts there was nothing, throughout dads illness he had the worst pain from the tumor and this was impossible to control due to the aggresiveness of the meso, we never let on to dad that we could not help him or the strength and fight that is a natural instinct might have gone, but sadly dad passed away last week after a couraegous fight, i still believe he will wake up and come home at the moment i know this will pass but i just want to stress to you all that are still going through this nightmare to push and push every medical option that is possible for your loved one and dont except that there is nothing but palliative care left, each case is so individual and i no that we done everything possible to help my poor dad and he would be proud of us for that, our loved ones will be and are now at peace and no longer suffering and this is some kind of a small refief that they dont have to suffer at the hands of Mesothelioma anymore, my heart goes out to you all that are begining to start this or at the end of the journey.
Claire xxx

Posted by claire waters on Thursday,21.02.08 @ 19:29pm | #748

Hi Rebecca
I am so sorry to hear about your loss, We know how difficult it is to deal with but you are not alone.
Please call if you need to chat, I think that sometimes having someone to 'sound off' at really helps.
Our numbers are at the bottom of the page.

Posted by Diane on Monday,18.02.08 @ 23:25pm | #747

I have just found this site and am so glad that I know now ther are people out there feeling just like me. My Dad was diagnosed in Sept 2007 and died on 29th December 2007. We think he came into contact with the asbestos in the navy during the sixties. I have had to do so much organinsing and looking ater my Mum that it is only now I am realising how much this has taken it's toll. I have two young chidren so I am always busy but in the quiet times I am really missing him and feeling angry that he was so young (64) and didn't have time to retitre and enjoy his free time. I miss him every day and everyhting feel so surreal.

Posted by Rebecca on Monday,18.02.08 @ 20:51pm | #746

Dear Sue, so sorry to hear your mum has this terrible disease. It is natural that you are anxious & worried - but you are not alone - some of us have been on this journey for a while now - my husband was diagnosed 3 1/2 years ago & whilst not a well man in comparison to some is doing well. Therefore if there is anything at all you would like to ask, please get in touch. My thoughts are with you. linda. linda.woodland@sky.com is my e mail address.

Posted by LINDA on Friday,15.02.08 @ 13:51pm | #745

Dear Sue
Please give Diane or myself a call, we would be really happy to speak with you. I know how frightening this journey is, you're not alone. There are many people that can help and sometimes talking to someone with the same experience can ease the pain that you feel. We are thinking of you, please stay in touch.
Lynne

Posted by Lynne on Friday,15.02.08 @ 09:32am | #744

Dear Diana and Lynne, I have been reading your website and I feel terrribly scared and anxious. My wonderful mother was diagnosed with this dreadful disease in August. Words cannot express the way we are all feeling as a family.I pray that her chemo will help her as I cannot bear the suffering that she is experiencing at present. Kind Regards, Sue

Posted by sue scarlett on Thursday,14.02.08 @ 22:29pm | #743

Hello Donna,

Thanks very much for your message. It's sounds like you both have great courage and a positive attitude. I spoke to our lung care nurse today who is as frustrated as us that Dad is still on the waiting list. We have agreed to talk again next week when we might get Dad in to have a little fluid drawn off if he is still struggling. Dad seems in relatively good spirits although he is not sleeping well at all as he keeps feeling sick. He takes gaviscon and his appetite is not good either. Hopefully it won't be too much longer anyway. Thanks for your words of support, they mean a lot.

Best wishes to you both and enjoy Valentine's Day!

Raquel :o)

Posted by Raquel on Friday,1.02.08 @ 14:49pm | #742

Hi Raquel,

Sorry to hear about your Dad and that you are still waiting for him to have his operation to have his lung drained and talced. My husband had this procedure completed in November 06 and it really did help his breathing. He didn't have any radiotherapy afterwards, although later had chemo.

I am so pleased your Dad is remaining positive, because it really does help. We take every day as it comes; we have just had a bonus Xmas and my husband's next target is Valentines day and then March for his birthday when he will be 76 and receive another free TV Licence.

I hope this helps and best wishes to your Mum and Dad. Thinking of you all, take care. Donna

Posted by Donna on Sunday,27.01.08 @ 07:11am | #741

Hi everyone, Maxine, thanks so much for sharing your experiences with me. It helps me to know what might be ahead for us. We are still waiting for Dad's op. Although I was chasing the hospital weekly, (just want to feel like I am doing something) we have all agreed to back off for two more weeks as Dad is almost enjoying this period of not knowing the full extent of what is happening inside him. Once he has the op (they will be checking to see if "it" has spread to his windpipe)both him and Mum feel things might snowball. Anyway, we shall see. We have applied for a disabled badge for Dad as he is really struggling to walk any distance now especially with the cold, wondy rainy weather we have been having. Once we have a more info after the op I will contact this site again. I am sure we will get lots of info from the hospital but it always helps to have a broader perspective.

Best wishes to you all

Raquel :o)

Posted by Raquel on Saturday,26.01.08 @ 09:10am | #740

The Scottish Cabinet has agreed to overturn the House of Lords decision on pleural plaques , when this happens it will be possible for Scottish workers to claim compensation but not for English & Welsh workers ,does this seem fair to you ? you may wish to bring this to the attention of your local Member of Parliament by writing or telephoning them .Why should employers and their insurance companies get away with polluting workers lungs with asbestos and not pay compensation .

Posted by gordon brown on Sunday,20.01.08 @ 16:00pm | #737

Hi Raquel,

I can't remember how long it was, after Dad's drain & talc procedure, that he had radiotherapy.

Basically he was left with 2 holes in his back and went later to have radiotherapy. He only had one visit but the radiotherapy laser was put right on his skin to seal the holes and it only took a few minutes. This was suposedly to stop the cancer, which the consultant described as branches, growing through the nervous system and breaking out through his skin. He was told after radiotherapy never to let the sun get to his skin and so after that we barely saw Dads torso and therefore it was a shock when 2 years down the line I visited the hospital with him and realised just how thin he was actually getting and it did shock me as my Dad has always been a big athletic looking man and to see him practicaly skeletal was terribly upsetting. I remember going to work the next day and crying on my Managers shoulder.

2 years after the drain & talc procedure & radiotherapy the lumps started to appear around his back and were getting bigger, so the radiotherapy after the procedure is not a sure way of preventing it! He had more radiotherapy, just a short sharpe burst again but it was difficult as they could not let the radiotherapy touch any of the areas he had had it the first time. The biggest lumps, however, did get smaller, but Dad got sicker as well, so when chemotherapy was the only other option left, he couldn't have it because he was too week and subsequently died 2 months later.

We are in no doubt that without this procedure, my lovely Dad woud not have been with us as long as he was. It is also down to his great spirit to not let this thing beat him, although he had his ups and downs, he was so brave and I am so proud of him and that he was my Dad.

It will be a year 22/2/08, day before my birthday, my Dad passed away and it still only feels like last month. It is really hard but we are all coping as best we can and with the great support & help that Diane & Lynne at HASAG provide.

Love to everyone. Maxine x

Posted by Maxine Lettin on Friday,18.01.08 @ 19:30pm | #736

Hello Valerie, thanks for your reply. It's so sad to see so many of us in the same boat, isn't it? Still I suppose it's better than being in boats on our own. It's good to know that these procedures have positive effect. I know what you mean about taking in the info. Either my sister or myself attend appointments with Mum and Dad and it's amazing how we all remember different parts of the meeting. When I went through all this with my mum in law and her ovarian cancer last year we both kept a note pad to hand for questions and would tick them off when we had answered them. Even then if we dodn't write the answers down we would struggle to remember those! I am trying not to get too bogged down with info this time and am keeping the most prevalent issues in my mind for now. It's the waiting for the op which is hardest. Anyway, all the best to you both.

Raquel :o)

Posted by Raquel on Tuesday,15.01.08 @ 19:29pm | #735

hi Raaquel,
My Husband is waiting for Radiotherapy just 3 within the next few weeks. The Oncologist we saw at St.Mary's was very
nice and did explain things quite well.
Unfortunately, one does'nt seem to take
everything in at the time and like you
would like to know more, and perhaps wish i had taken it down on paper at the time.
I am going to get in touch with our key
worker and perhaps it will help us understand more.
Valerie

Posted by Valerie on Tuesday,15.01.08 @ 09:29am | #733

Hi Raquel,
Sorry to hear of your News.
My Husband has had all this done recently several weeks before Christmas.He was in Hospital for several days. Since being diagnosed we
have tried to remain positive, he has played Bowls quite a few times and just
last week had a few days away where he
went swimming several times.Before,he had the drain he was very breathless and fatigue, since removing the fluid he described as being a release, although his mobility is not very good(but then he does also suffer with Parkinsons) which i think has slightly
got worse.We find that meeting with lots of friends and company does help
take his mind off the illness.
I sincerely hope all goes well, and hope this helps that in my husband's case since the fluid drain, etc he does
feel better.
Valerie

Posted by Valerie on Tuesday,15.01.08 @ 09:29am | #732

hi, thankyou for responding to my message re Insurance. I have been spoken to quite a few Companies, one offering which was 1900 and the other
2,750 and most of the others not interested because my Husband has only
just been diagnosed and it is terminal.
One girl at one of the Companies even
suggested that if it was perhaps a year later they could re-look at it!!!
It seems unfair as they are not making
it any easier for sick people.
However,we will continue trying if not
we have some lovely places in Uk.
Thankyou very much for all your response it was most appreciated.
Bye for Now
Valerie

Posted by Valerie on Tuesday,15.01.08 @ 09:28am | #731

Hi Diane and Maxine,

Thanks for your kind words. We are evidently going to be on a rollercoaster ride. All we can do is buckle up and hold on tight. It's "just" a matter of waiting for the op now. Hopefully then we will have a clearer diagnosis. I know each cancer is different but does anyone have any experience of the radiotheraoy that will be given to Dad after his op to minimise the risk of spread?

THanks Raquel :o)

Posted by Raquel on Monday,14.01.08 @ 18:46pm | #727

Hi Raquel,

Sorry to hear about your Dad.
I understand how you feel. It is distressing and heartbreaking to watch your loved one go through the suffering.

Like your Dad, mine continued to try and keep himself fit by walking and then feeling like he'd gone through the mill the rest of the day. He did get to a stage where he was able to do more until the Meso struck him down again.

Be there for each other. It is hard, but just take each day at a time.

Best wishes to all of you.

Love Maxine

Posted by Maxine on Monday,14.01.08 @ 09:43am | #725

Hi Raquel
I am so sorry to hear your news, I know just how difficult it can be.
Should you want to talk at any time, please give one of us a call on one of the numbers below.
Will be thinking of you.
Diane

Posted by Diane on Sunday,13.01.08 @ 13:08pm | #723

Hi,

My Dad is undergoing tests and is waiting for an op to take biopsies, drain fluid, check windpipe and poss glue membrane. They are "almost certain" he has cancer and he has asbestos at the bottom of his lung. He broke our old asbestos garage up with my Mum around forty years ago so this could be the cause. The surgeon has stated further durgery is not an option due to the location. It's all early days and we are all a bit "rabbit caught in headlights" at the moment. Up until a year ago he was a young 71 year old. He is so breathless now and the fatigue he suffers is completely debilitating. He makes the effort to walk to the local shops each day and spends most of the remaining day on the bed. What the heck is happening? The waiting is horrendous and I have "exam butterflies" 24/7. If it is mesothelioma (I cannot conclude otherwise looking at all the info available, it seems a textbook case) I cannot help wondering what is in store for us as a family....

Thanks for reading

Raquel :o(

Posted by Raquel on Sunday,13.01.08 @ 12:58pm | #721

Hi Valerie,

My Dad was always openly honest with Free Spirit on both occassions he used them and he paid a lot of money to get it. They were recommended to Dad by the Company I work for as they would no longer insure him themselves.

There are illnesses that render a Traveler unfit to travel due to the uncertainty of an illness including terminal illness.

My Dad was very ill before and after his procedure to have his lung drained and talced. We nearly lost him a week after the procedure but once we got him over the worst he started to recover and was able to do all the things he used to including his sport, with limitations (he couldn't play the full 18 hols on a golf course).

It does depend on the stage of the illness. Fortunately, at the time my Dad took his insurance he had not been hospitalised or treated in the 12 months and had not been deemed as unfit to travel by Dr's or consultants. In fact they were very pleased with him and couldn't believe how well he was doing. However,due to the cost of the insurance Dad did consider going without it, against my advice, and the Dr's did say it was unwise to travel without it, even stating that if anything was to go wrong (which it shouldn't) then noone must touch him without referral to the consultant in Southampton.

Despite the nature of the illness, with good supervision and management consultants can tell if the tumours are slowly or vastly aggressive.

Dad became fragile and unwell again 8 months before and got considerably worse 2 months before he passed away in Feb 2007. Had he got well enough to book another cruise (which he wanted to do) he would not have been able to get insurance due to the problems he had experienced within that 8 months.

If your husband has been newly diagnosed and is relatively fit at this time with no hospitalisation and not being deemed unfit to travel then it might be worth giving Free Spirit a try, but always you must be honest and answer all questions honestly. You must also abide by the Consultants decision.

I wish you both luck.

Love Maxine

Posted by Maxine on Wednesday,9.01.08 @ 19:50pm | #719

Valarie,

I was sorry to hear that your husband Des was diagnosed with meso, but it is good to know that you are both staying positive.

As for holiday insurance for a cruise, I do wish you every success in finding an insurance company willing to cover your husband, because we tried every single company advised to us just for a weeks holiday in Bridlington and no-one would touch us. We eventually booked and went away anyway, but would never attempt to go abroad without insurance. How any one else manages to go with meso, I will never know.

Whatever you do be totally honest with the insurance company, because the start of my husbands meso was found by a Private Clinic in Palma while we were away on holiday when we were both taken ill. Be aware that Insurance Companies expect to have access to all personal medical records at home before paying out for any treatment. My husband had other problems that we had declared and thankfully no record of breathing related problems at the time of booking.

Hoping Des manages to go away on his cruise and thinking of you both. Good Luck!

Donna

Posted by Donna on Wednesday,9.01.08 @ 10:45am | #717

Valerie,

Following my Dad's diagnosis, he went on as many cruises as possible and went with Cunard & P&O. He found towards the last year that cruises requiring flights ro America were too long and so looked at ones sailing from Southampton, our local port.

For insurance he went with Freespirit. They have a website and you can get further details from there. I don't have them to hand. Freespirit was a Travel Insurance Company recommended to Dad by the Insurance Company I work for.

I sincerely wish you both luck and happiness.

Maxine x

Posted by Maxine on Tuesday,8.01.08 @ 17:48pm | #715

Looking for Staff who worked with Fred 'Digger' Sargant at Marchwood Power Station between 1970 and 1990.

Sadly my uncle died 4th July 2005 aged just 59 from Mesothelioma.We were a very close family and miss him terribly. Since his death a solicitor has advised that we try and contact any colleagues he may have worked with at the powerstation, both for alerting them of the possible implications and also to find out further information as to the reason my lovely uncle had to suffer with this awful disease.
If anyone has any information I would be very grateful if they would contact me by e:mail at Liz.smithie@hotmail.co.uk.

Many thanks
Liz

Posted by Liz on Monday,7.01.08 @ 08:41am | #713

My Husbnds greatest wish since being
diagnosed is to go on a Cruise.
I have been in touch with 3 companies today,without success.Can anyone advise
me of a Company that will cover.
It will be most appreciated.
Valerie
2/12/008

Posted by valerie on Friday,4.01.08 @ 11:20am | #711

MY HUSBAND DES WAS DIAGNOSED ON 11/12/07 WITH MESOTHELIOMA FOLLOWING CHEST X RAY, CT SCAN,AND THOROSCOSPY WHEN NEARLY 5 LITRES WAS DRAINED FROM HIS LUNG. WE WERE VERY SHOCKED BY THIS NEWS, AS WE WAS WHEN HE WAS DIAGNOSED WITH PARKINSONS IN 2002 AT THE AGE OF 62,HE CONTINUED TO WORK TILL HE WAS 65 AND OBJECTED TO MEDICATION,WE MOVED TO SOUTH COAST AND
DES JOINED THE BOWLS CLUB,WENT SWIMMING AND ENJOYED LIFE IN GENERAL.
AND BECAME VERY POSITIVE,AND THEN ACCEPTED CONTROLLED RELEASE MEDICATION.
THEN THE DIAGNOSIS OF MESO.......
HE IS GOING TO HAVE 3 RADIOTHERAPY TEATMENTS IN THE NEXT FEW WEEKS.
AT THE MOMENT HE IS VERY TIRED, AND NOT
A LOT OF ENERGY.
WHAT I FIND GOOD THAT HE STILL HAS A GOOD SENSE OF HUMOUR AND IS BETTER IN
COMPANY WHEN HE SEEMS TO PUT HIS ILLNESS BEHIND HIM.
ALTHOUGH, WE HAVE ENJOYED LOTS OF HOLIDAYS OVER THE YEARS,HE IS CLEARLY
EXCITED ABOUT BOOKING A CRUISE,SO THAT'S HIS PROJECT ALONG WITH GOING BACK TO PLAY BOWLS THIS FRIDAY.
DES WAS AN ELECTRICIAN AND WORKED ON MANY SITES FROM 1956 UNTIL HE RETIRED AND IT WAS QUITE FRIGHTENING WHEN GOING
BACK ON HIS WORK HISTORY AT JUST HOW MANY HAD ASBESTOS EXPOSURE.
ONE OF THE MOST IMPORTANT THINGS WE WOULD LIKE TO EXPRESS AT THE SUPPORT OF THE GP,AND THE RESPIRATORY TEAM AT
QA,WHO ARE ABSOLUTELY FANTASTIC, WE FEEL LUCKY!!!
AND SECONDLY,TO HAVE BEEN ADVISED OF THIS SITE WHICH GIVES YOU THE FEELING OF NOT BEING ALONE.
WE HOPE TO ATTEND THE MEETING AT PORTSMOUTH ON 24TH JANUARY 2008.
AND THANKYOU LYNNE FOR THE CHAT TODAY.
VAL AND DES
2.01.2008.

Posted by Valerie Dougherty on Thursday,3.01.08 @ 09:21am | #709

Merry Christmas to everyone who has contacted Diane and myself over this past year. 2007 has been a huge journey for us, we have met a lot of wonderful brave families. Without the love, kindness and support you have all shown, our support group would not be the success it is today. Heartfelt thanks to you all, see you in the new year. Love Lynne & Diane. X X

Posted by Lynne on Monday,24.12.07 @ 15:12pm | #706

Dear Diane/Lyn, just wanted to wish you both and your families a lovely Christmas. Dad went into Southampton General this morning for this "talc procedure". Having it done this afternoon and we'll be spending Christmas day there to try and make him as comfortable as possible. Mums going to midnight mass, which I imagine will be quite emotional. I just wanted to say thank you again for all your help, support and advice since dad was diagnosed last month. Without you I think I would've completely fallen apart by now. Best wishes to you all.

Posted by Emma on Monday,24.12.07 @ 13:00pm | #705

Hi Diane
Thanks for your response yes mum had about 4 chemo's the first was Alimta and Carboplatin this shrunk mums cancer by half and the results were execellent. I am not sure of the names of the other chemo's, mum was supposed to have been going on the Mars trial this year but unfortunatly she was not well enough to cope with the trial.Mum said that she was lucky to have 5 more years and could not thank the hospital enough. Unfortunatly we dont see it like that we feel she and others were cheated out of a happy healthy retirement. The inquest proved that we were told apart from her cancer she was fit and well and all other organs were normal for her age. My mum suffered terribly in the last 6 month's and i think now the goverment need to really do more for all the other sufferers. Until you come across this terrible disease people could never imagine how much pain and suffering the person or the family have to go through all the emotions and pain. All i would like to say to all the other people with this terrible disease is stay strong keep well and fight on. I am so pleased to have been able to share our story with you all, many thanks for all the support you both give to us all. regards Mandy

Posted by Mandy on Friday,21.12.07 @ 14:12pm | #703

Hi Mandy
Thanks for your posting, we are very sorry that your Mother suffered from this terrible disease.
She did really well to stay with you for so long. We have heard of others that have survived for a similiar length of time or longer, usually after surgery or chemo.
Did your Mother have any treatment?

We keep a scrapbook and your Mother's story takes pride of place with other 'meso heroes'

We will be thinking of you, particularly at this difficult time of year. Stay strong!

Posted by Diane on Tuesday,18.12.07 @ 11:30am | #701

Hi Lynn and diane
Would just like to share our experience with yourselves and others suffering from Meshelioma our beloved mother Valerie Gregory passed away at the end of October after suffering for 5 years with this disease. We think she is the longest person to have had the disease? could you shed any light to this? My mothers plight was advised in the front page of the daily echo, we would like to share are wishes to all the other sufferers with this disease and say stay strong if you have the will you can fight it. regards Mandy

Posted by Mandy on Sunday,16.12.07 @ 17:57pm | #699

Hi Donna
I will pass on your comments and see what I can do.
Also I have some news for you, which hopefully will help.

Posted by Diane on Sunday,9.12.07 @ 10:54am | #697

Pleased to see that at last people are using your message board again. Any chance of having the most recent messages at the top of the page instead of having to scroll down?
Keep up the good work. Donna

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Posted by Donna on Sunday,9.12.07 @ 10:50am | #695

Hi Lynne & Diane,
Just a note to say I always look at the site but mainly post comments on the Mick Knighton site as most people do.

It is a shame that the message board on the HASAG site is not running as well. Is this maybe because most people live further affield than Hampshire, who are sufferers of mesothelioma or are looking after or lost someone from it. I wouldn't have thought it as the railways and Southampton docks are 2 of the most known exposers of it and as I understand it, in the 70's asbestos was flying around the air across southampton.

Please, anyone that has lost, knows or looks after anyone with mesothelioma don't be afraid to post your comments or feelings as there are loads of people who know what you are going through and you will seek comfort from their experiences and may also make new friends.

I send my love to everyone

Maxine from Southampton

Posted by Maxine on Saturday,10.11.07 @ 10:14am | #687

Unfortunately it is not possible to be awarded Industrial Injuries Disablement Benefit (IIDB), Disability Living Allowance (DLA), or Attendance Allowance (AA) with a Pleural Plaques diagnosis.
If anyone has any further queries, please do not hesitate to contact us.

Posted by Diane on Sunday,21.10.07 @ 17:23pm | #685

Once again the giant insurance companies have won their case and I believe the judges were biased towards these companies . I recommend that anyone with pleural plaques apply firstly for "disability living allowance " then if granted apply for " industrial injuries disablement benefit " you can get the appropriate application forms from your local job centre or get in touch with Diane or Lynne . If you experience any aches or pains in or around your ribcage ask your GP for an x-ray or CT scan just to put your mind at rest .

Posted by gordon brown on Sunday,21.10.07 @ 17:23pm | #684

Thousands of asbestos victims who suffer from pleural plaques, scarring of the lung pleura caused by inhalation of asbestos fibres, will react with anger and dismay at today’s House of Lord’s decision to end compensation for the anxiety and psychiatric illness caused by a diagnosis of pleural plaques. Please contact us if you have any questions regarding the ruling.

Posted by Lynne on Wednesday,17.10.07 @ 19:37pm | #681

Are you currently receiving Alimta or have you been prescribed it recently? Have you or anyone you know been recommended to go the MARS trial? We would be grateful for any feedback regarding these treatments. Having been asked regularly to comment it would be nice to hear from the horses mouth!! Any thoughts and experiences would be great to pass on. Thank you

Posted by Lynne on Monday,15.10.07 @ 17:57pm | #679

The 2nd Mesothelioma UK Patient & Carer Day is being held at The Novotel Euston in London on Saturday 13th October.
This is free of charge to patients and carers.
Logon to:
http://www.mesothelioma.uk.com/
or call 0800 169 2409 for further details and registration.

Posted by Diane on Friday,5.10.07 @ 10:23am | #677

Diane and Lynne will be taking part in The Hydro Active Womens Challenge 5K Sunday 16th September in Hyde Park London.

Sponsorship donations can be made via the Paypal at the top of the page.
This is in aid of mesothelioma research and all proceeds will be donated to the Mick Knighton Mesothelioma Research Fund.

Posted by Diane on Saturday,15.09.07 @ 18:39pm | #675

Hi Diane & Lynn, I have just been browsing your web site & want to say what a good job you have done with it, well done. One of you very kindly e mailed me after i left a message on the Mick Knighton site, unfortunately my computer crashed & I lost it, but thanks anyway for getting in touch. This insidious disease is so difficult to get accurate information about that it is great you have a message board for sufferers to stay in touch with each other to encourage, love & share during difficult times. Having cared for my husband for 3years since he was diagnosed & although not a well man by any means he is still with us, i am always willing to be in contact with anyone to give any help or advice i can.linda

Posted by linda on Thursday,23.08.07 @ 07:46am | #673

A message for Donna,

Thank you for your message in response to mine recently. I read about your problem with getting insurance for your holiday. Have you tried FREE SPIRIT TRAVEL INSURANCE. They cover pre-existing medical conditions and my Dad was advised to contact them by the Insurance Co. I work for. They are more expensive than most but it may be a comfort to you to know that should your husband take ill you will not have the additional worry of cost. I know you are holidaying in this country and so cost may not be a problem as the NHS service will be the same (sometimes better) wherever you are but should your husband want to come home to be with all the family then travel insurers will arrange whatever care you and your husband needs to bring him back home.

I hope your husband will be well enough to enjoy the holiday and I wish you all the best.

Love Maxine. x
ps you can email me if you like at maxinelettin@yahoo.co.uk

Posted by Maxine on Monday,6.08.07 @ 20:37pm | #481

Donna, please call me if you need anything or just need to chat.
Diane

Posted by Diane on Sunday,29.07.07 @ 10:30am | #357

Message to Maxine. I was sorry to hear of your Dad's passing and understand every emotion you have felt during your Dad's illness and unless you personally go through it, I don't think anyone can understand the sheer frustration and hurt waiting and watching the man you love die. I posted earlier so will not repeat it. Thank you for sharing your feelings as it must have been hard for you to write it all down. My husband's breathing is getting worse and he's feeling very fatigued which I don't think is now chemo related. Soon, we are hoping to have a weeks holiday in this country by the sea, if he's well enough to travel, but have booked knowing we will have to pay the full cost as all insurance companies that should cover any cancellation fees did not want to know. Mind you who cares about the cost, if we have some good quality life and time together. Thinking of all of you affected by this dreadful disease. Donna

Posted by Donna from Lincolnshire on Sunday,29.07.07 @ 10:24am | #355

A big thank you to everyone who attended our first coffee morning in Portsmouth. It was lovely to meet you all in person, I hope to see you all next month. Thanks again
Lynne

Posted by Lynne on Thursday,26.07.07 @ 21:12pm | #307

In response to Claire's message on 9/7/07.

I know exactly how you feel. My Dad was diagnosed with Mesothelioma 2years ago last Nov and he passed away in February 2007, the day before my birthday which has made it more poignent.

Soon after being diagnosed he had his lung drained and when he went for radiotherapy to seal the holes he was told he had just a couple of months to live still. It was unbearable and I couldn't imagine life without my Dad, who has been the closest friend I ever had. After a long recovery period from the op he began to get quite well, put on weight and we thought our old Dad was back. He continued to strive, taking longer walks and managed hills to prove he was ok. My Dad was always a very active and fit man before his diagnosis. He went on a cruise with Mum and their closest friends but I still wondered if my Dad would come back to me or if he would become ill again whilst away. I was really glad to meet him from Southampton Docks and have him back with us.

As time went by, although Dad appeared well (for only he knew how he felt deep inside)more follow up visits to the hospital he was constantly being given a max 6 months life sentence.

Although my Dad proved the professionals wrong on many occassions, as time went by and the prognosis he was constantly being given, his attitude towards life and his family became unbearable, especially in the last year. He was moody and picky, shouted and moaned. Not my Dad at all.

Like yourself I got very angry that my Dad was being taken from me through no fault of his own and I still am.

My Dad began to get quite frail and tired towards the end of October 2006 and although he seemed to pick up again, over xmas he was quite breathless again and I had to get him into hospital with pneumonia which meant he missed his new years eve party he had been planning for family and friends. He was adamant the party should go ahead but it wasn't the same without him. We said we'd have another party when he got better.

He came out of hospital but was so ill, Macmillan took him to our local hospice where he passed away 2 weeks later. He was very happy there and told us all not to worry about him. His passing wasn't easy for him or his family but in the hospice we were able to help him pass in a dignified, warm and friendly environment.

It isn't nice watching your loved one try to draw breath and getting weaker and weaker but the last 2 months of my Dad's life we became close again and he was able to share with me his fears his finances and his funeral requests. He actually opened up and told me how angry he was but that he had a good life (he was 72) and was very lucky. Those words tug at my heart frequently and although I think now of my Dad's happy times I still get very angry. He should still be here with his family, enjoying life like he always used to. I think of how awful the disease was but I think of his smiling face, always the joker and the latter brings a smile and a tear to my face.

I know it's not much consolation but you must keep focusing on being positive, enjoy the good times past and present and make life as enjoyable as possible. Your Dad will always be with you even when he passes on and you will cherish every moment you had with him for ever and I believe that there is somewhere else after life and people that pass over have no afflictions in their next life, so when you meet again he will be the same person you had before this awful disease took over his body.

I wish you, your family and your Dad well.

Love Maxine (Southampton) x

Posted by Maxine on Wednesday,25.07.07 @ 09:08am | #295

Hi Diane & Lynne
After 4 months my Dads inquest is being heard on 1/8 at Winchester. Hopefully this will help us to claim the last lot of compensation my Dad has waited over a year for and was concerned would die with him.

It is the principle that my Dad died due to an industrial disease that makes me so angry and unable to give up and ensure that his continual fight for compensation and the only last thing I can do for my Dad is to get the money that is rightfully his and pass it on to my Mum.

We miss Dad so much and nothing can soften the grief and anger I feel that my Dad who was a very fit man has been taken from us in such a cruel and distressing way, before his time.

(George Haynes) I mention his name as there may be loads of people out there that new him, have visited this sight, and may now find themselves in the position that he was.

Lynne & Diane. I know we have been in contact on several occassions and you have helped me along the lows of Dad's journey to eventual death and have helped me to grieve and given us such a lot of support and information that has been of great value to Dad (as you know) and the rest of his family.

thank you and I will stay in touch.

Luv Maxine x

Posted by Maxine on Wednesday,11.07.07 @ 17:51pm | #125

My dad has just been diagnosed with Mesothelioma he is 61 and has worked in the glass trade all his life so this has come to a great shock to my parents and I as I know it has for everyone in this position.
He first complained for pain back in December after various tests for kidney stones etc all tests came back clear and we were told it could be a pulled muscle, in Feb he had a scan which showed a small amount of fluid on the lung but we were told nothing to worry about. Still in pain he had an emergency lung drain in May after 2 litres were removed he was diagnosed. After a PET scan showed no cancer activity in the area all our hopes began to build that just maybe they had got it wrong and he was sent for a biopsy, at the time of op the surgeon and anaethnatist both said that they thought it could be a red herring but at least this was be a 100% confirmed diagnosis in 2-3 weeks, unfortunately the surgeon called 2 days later to confirm the diagnosis and although we had already been told it felt like being told all over again.
It is impossible for me to envisage life without him and keep pushing these thoughts from my mind as best I can.
We have been offered chemo, but we have also been informed about the MARS trial which seems such a daunting option. We know this trial has been running for 2 years and 20 people have been put forward for it so far but we are unable to find out the outcome so I find it impossible for us to make such a decision when there is no evidence that this will help and could shorten what time he has left due to complications and impaired quality of life.

He is so well at the moment he is in quite a bit of pain we think from the biopsy but apart from that he is still going to work and doing all the things he always has and so we find it so difficult to accept that he is ill and may not be with us for that much longer. The thought of going for this operation which will impair his life if all things go according to plan when he is so normal now is impossible. I would do anything for a chance of him being here for as long as possible but at the same time I know that it is a pilot trial and with no statistic available that is by far the biggest decision we will ever face and could have him with us for just as long with a better quality of life for expecting the chemo alone.

I could write forever as I have so many questions in my head and feel so helpless that the most important person in my life has been diagnosed from no fault of his own and no matter how hard I try I can not solve this.

I had never heard of this disease until now and have realised just how many people are affected, I live in Berkshire and there are no support groups I can find. Lynne has been great and contacted me as soon as she read my email.

My heart goes out to all those people affected and I wish everyone all the luck in the world with their treatments.
I would welcome any feedback.
Clare

Posted by Clare on Monday,9.07.07 @ 13:21pm | #101

Hooray! Fantastic news
We are pleased to announce that NICE have approved the use of Alimta (pemetrexed) for Mesothelioma sufferers on the NHS. This comes after much campaigning by dedicated Health professionals, support groups and individuals alike. We hope that the PCT's will respond to this decision without further delay and that this will encourage further research into this disease.
Maybe one day we will have a cure.
Lynne

Posted by Lynne on Monday,9.07.07 @ 09:12am | #98

The first Portsmouth meeting will be held at:

The Hilton, Portsmouth
on Thursday 26th July
10:30am

Hope to see you there!

Posted by Diane on Thursday,5.07.07 @ 22:36pm | #44

Well done - your website is very good, and you are doing wonderful work with the support group.Diane, it was lovely to chat with you.
Best wishes
Kimberley
The June Hancock Mesothelioma Research Fund

Posted by Kimberley Stubbs on Thursday,5.07.07 @ 13:51pm | #40

NICE are expected to announce their decision regarding the use of Alimta (Pemetrexed)for use on the NHS on Monday 9th July. Fingers crossed for good news!
Lynne

Posted by Lynne on Thursday,5.07.07 @ 12:56pm | #39

Congratulations on your new website. Information and Support easily accessible to all. Keep up the good work.

Warm regards
Chris
Chris Knighton
M.K.M.R.F.
North East Mesothelioma Self Help Group

Posted by Chris Knighton on Wednesday,4.07.07 @ 16:21pm | #33

Donna, If you email me your contact details i can call you for a chat. You are not intruding at all, I would be pleased to talk to you.
Thats what we are here for.
My email address is at the bottom of this page.
Lynne

Posted by Lynne on Wednesday,4.07.07 @ 14:42pm | #32

Not sure if this site is for help, but here goes. My husband is luckier than many because he wasn't diagnosed Mesothelioma until he was 74 in Nov 06 when he had his lung drained; decided against major op in Jan (as it would have killed him & the Consultant wouldn't do it anyway). Feb to Mid-June he's had chemo (not Alimta)and now we are alone waiting to see the Consultant again in early August. We have been told WE WILL KNOW when things start getting worse! I know my husbands breathing is as bad as it was before he had his lung drained and he's very fatigued, but that could be the after affects of chemo. So far his appetite is fairly good. Please how quickly do things become noticable? None of the websites help and my husband may not want to know, but I feel if I have some idea then I could probably try and prepare for it, or know when it is happening. We do not have a support group in this area, but several have been helpful especially Diane, but I don't like to intrude with phone calls. Kind regards and best wishes to all those families who are affected by this. My thoughts are with you. Donna

Posted by Donna from Lincolnshire on Wednesday,4.07.07 @ 12:49pm | #31

Hope the walk went ok and the weather was kind to you

Posted by Emma on Monday,2.07.07 @ 18:34pm | #22

Diane & Lynne will be raising money for Marie Curie Cancer Care (Sunday 1 July) in the Southampton Wig Walk. This will be on Southampton Common from 11am.

If anyone would like to brave the rain, come and support us!!!

Posted by Diane on Saturday,30.06.07 @ 20:06pm | #21

Pleural plaques: Rothwell House of Lords Hearing, 25th June 2007

This case has been heard in the House of Lords this week. (As per above posting number 7)
We are not likely to hear any decision regarding plaques until July and with the summer recess pending it is possible that any announcement could be delayed until September...

Posted by Diane on Saturday,30.06.07 @ 19:55pm | #20

I`d like to give my heartfelt thanks to Lynne and Diane and the rest of the HASAG team for their guidance and help over the last 2 months. 2 years ago I was diagnosed with pleural plaques but then I developed constant pain in my right rib cage , I then went to A local hospital in Portsmouth and over the next 18 months I had various x-rays CT scans and lung function tests but they could not give me an exact diagnosis . I then watched a programme on Meridian TV about mesothelioma and I got in touch with HASAG and Diane & Lynne Helped me to achieve the correct diagnosis, which was that I had benign pleural thickening. My mind has now been put at rest, as it was found that I did not have Mesothelioma or asbestosis

In one day the worry and mental anguish of the last 18 months had been lifted because as my younger sister Jill Thornton said in the previous letter half of our family have died of asbestos related diseases and I thought I was going the same way . So once again thank you very much Diane & Lynne for your help and assistance and I recommend anyone suffering from any asbestos disease to contact them as they will give you any help that they can. gordon brown.

Posted by gordon brown on Saturday,30.06.07 @ 11:31am | #19

i nursed my mother through her fight with an asbestos related desease and although she didnt develope mesothelioma she still suffered badly . she didnt even work with asbestos but was unfortunate enough to live opposite a factory that produced it .the government should hang their heads in shame for the lack of care they are showing to these people who , through no fault of their own have developed this frightening desease. several members of my family have been dianosed with pleural plaques. they worked hard all their lives, paid their dues to the government every week but where is the government now ? the powers that be can talk all they want and tell these people that pleural plaques dont cause health problems , but i will stand my corner with any one of them and argue the fact that pleural plaques on their own may not cause the problems but all the secondry illnesses caused because of the pleural plaque cause a great deal of stress and discomfort. every time my mother caught a slight cold , because of the state of her lungs, she developed a chest infection, severe enough to warrent hospitalisation. every time this happened [which was very often] the doctors would give her steroids , which in turn caused her bones to crumble and break,she would be very bloated and gained so much weight which in turn caused her great distress with her breathing .
i could go on and on about these pleural plaques that this government seem to think is not as harmful as the mesothelioma ,but it is like a cancer in itself because it is continuing to spread . i would just like to say "keep up the good work , good luck with your fight for compensation for people like my mother , brother, uncle, autie and posibly myself and if you ever need my support i would be only to pleased to help
good luck
jill

Posted by jill thornton on Tuesday,26.06.07 @ 14:43pm | #14

Good luck Diane & Lynne.

Posted by Donna Lincs on Sunday,24.06.07 @ 15:10pm | #13

I would just like to thank Diane for her help and understanding during this difficult time.

Posted by Stewart on Tuesday,19.06.07 @ 21:42pm | #9

Lets hope the law passed in Jan 05 by a vote of 2 to 1 by Lord Chief Justices Phillips,Longmore and Smith stating that pleural plaques do not amount to a compensatable injury is overturned .Before this law was passed workers who have pleural plaques could have settled for provisional damages of £4000 or settled out of court for a final payment of £7000 ,so lets see what they do on 25th June ,I expect that if the law is overturned these payments will be drastically reduced .So Diane and Lynne best of luck at the demo .

Posted by gordon brown on Tuesday,19.06.07 @ 11:16am | #8

The House of Lords is due to rule on compensation for Pleural Plaques on Monday 25th June. There will be a demonstration outside the Lords at 9:30am,
followed by a lobby in Committee Room 10 in the House of Commons.

Lynne and I will be in London to support this event.

Posted by Diane on Monday,18.06.07 @ 22:50pm | #7

Its so great to see somebody offering so much support to people - and so sad thats its so needed. :-(

Posted by Emma on Tuesday,12.06.07 @ 19:27pm | #6

I would be interested in meeting in the Portsmouth area as I can come over from the I.O.W. on the Hover or Cat.

Posted by jenny Hillier on Tuesday,12.06.07 @ 15:02pm | #5

Lynne,following our talk on the phone I am interested in the coffee mornings in the Portsmouth area.

Posted by gordon brown on Tuesday,12.06.07 @ 13:42pm | #4

We are currently in the process of setting up a coffee morning in the portsmouth area. If anyone is interested and would like to attend please let us know.
Lynne

Posted by Lynne on Monday,11.06.07 @ 15:03pm | #3

Hope everyone will find the website easier to use. Contact Diane or myself with any feed back.
Thanks
Lynne

Posted by lynne on Monday,11.06.07 @ 13:41pm | #2

Appeal to overturn pleural plaques law,
To those people who replied to the advert by Freeclaim IDC and went on to have a CT scan and were told that they had pleural plaques.
As you may well know 3 high court judges passed a new law in Jan 2006 saying that Pleural Plaques do not amount to a compensatable injury and that we could not make a claim for compensation from ex employers or claim industrial disease benefit. The appeal to overturn this law will be taking place in the House of Lords between 25th June and 2nd July 2007, before this law was passed workers who had been diagnosed with PPs could have settled for provisional damages of £4000 or a final settlement of £7000. These High Court Judges were also critical of claims lawyers who make a business from litigation and encourage workers who have been exposed to asbestos to make claims for compensation , I think these lawyers are doing a good job , where would the ordinary working class man get the money to take their ex employers to court.

Posted by Lynne on Thursday,7.12.06 @ 17:08pm | #405

Thank you
A big thank you to everyone involved in Thursdays Meridian piece. I know how difficult it must have been. It looked fab, now you're all tv stars. Thanks again, Lynne.

Posted by Lynne on Thursday,7.12.06 @ 17:07pm | #404

Hi Dee I can try to find some information if you would like me to, but I feel that the best people talk to would be Mesothelioma UK on 0800 169 2409 or http://www.mesothelioma.uk.com Keep in touch Diane

Posted by Diane on Thursday,7.12.06 @ 17:06pm | #403

Hi Dee, I am very sorry to hear the news of your husband's diagnosis. It is difficult to say anything about the likelihood of tumour shrinkage without actually knowing what he is actually being treated with. I am certainly not a medical expert, but I am still in contact with my Dad's consultant and will try to help you if I can. Best wishes Diane.

Posted by Diane on Thursday,7.12.06 @ 17:03pm | #402

Chemotherapy
My husband was diagnosed with peritoneal mesothelioma on March 22nd, and had his first dose of chemotherapy today. We have been told that it only has a 20-25% chance of shrinking the tumour - has anybody here had any experience in this and can help me?
He was treated with mitomycin, vinblastine and cisplastin. He seems really well this morning, with no adverse reactions to any of the drugs, so fingers crossed, he'll take well to future doses of chemo. Time will tell.

Posted by Dee on Thursday,7.12.06 @ 17:02pm | #401

Action Mesothelioma Day 2007
A big thank you for all the donations made for the balloon launch in Manchester.
Well done everyone we raised £250.01.
I am informed by Tony Whitston at the Greater Manchester Asbestos Victims Support Group that so far the total is over £21,000. A presentation will be arranged to the Mick Knighton & June Hancock mesothelioma research funds at a later date.

Posted by Diane on Thursday,7.12.06 @ 17:01pm | #400