2009 updated 2010 and 2011
You can read my Book detail
http://rayandmave.org.uk/html/more_of_our_books.html
I never actually worked with Asbestos.
All this pain and despair for me was caused by washing my husbands clothes back in 1961.
After National Service he went back as a Shipwright in the Dockyard where he worked with Asbestos.
Ray had a Scan and he has scaring I on the other hand have Mesothelioma.
I washed his clothes.
Prior to my Diagnosis I was very active person. I regular went to keep fit classes, went swimming, walked in the country side 14 miles sometimes and everyday without fail walked the dog 2.5 miles.
This changed on coming back from holiday in Spain in 2009.
I had burnt myself on an Iron at the New year and had not felt it.
My arms and hands twisted and my feet went numb and I couldn’t breath.
A visit to the doctor resulted in an admission to K&CC hospital, they drained 5 ltrs of fluid from my lungs. I was given the news that I had Mesothelioma and no future.
Such a pretty name for a deadly disease.
Prognosis was 3 months to 2 years .
I arranged my funeral, threw out my old clothes and bought new things for the home so that Ray wouldn’t have to worry about such things.
I was give an Appointment for Mrs King and she carried out the VAT’s with Talc op in Guys,
The Operation was a success and this was followed by Wound radiation and Chemo.
I hated the Chemo, 10hours of watching fluids going in my veins and then next day sick, I was so weak that I needed a stick to hold me up when I walked around.
Just as I got better the next 21 days came round and another Chemo and back to the sickness and weakness.
But after 4 sessions the CT Scan showed I was stable.
I enjoyed life again and was able to walk the dog but I did tire easily and afternoons I drop of to sleep.
We have a Motorhome and love camping so we carried on travelling in the UK.
I had a Scan in August 2010 and the Oncologist said “we don’t often sit in this chair and give out good news but today is an exception”. He handed me the results and said your tumour has shrunk.
I said “I didn’t think that was an option”
“Well its true and you can read the report”.
The Doctor was so excited at my news he kept shaking my hand.
I asked him what this means for me now.
So how long now, he stretched his arms wide open “who knows” he said “You are an unusual and lucky to get this news. Your prognosis is an open end situation”.
Scan results in Nov 2010 showed more shrinkage.
Then On March 14th 2011 I went for the results of a scan that I had in Feb 2011. I had waited a month for these and the Oncologist has told me the nasty is growing again.
I have opted for a scan in May and if it is still growing then I want 2nd line Chemo and she has agreed.
The fight still goes on.
http://www.rayandmave.org.uk/html/more_of_our_books.html
I don’t know If I said it already but …This blog rocks! I gotta say, that I read a lot of blogs on a daily basis and for the most part, people lack substance but, I just wanted to make a quick comment to say I’m glad I found your blog. Thanks,
A definite great read..Tony Brown
By: Tony Brown on September 24, 2009
at 1:38 pm
Hello Tony.
Thank you for your comment. My intention in this blog was to let others with the same condition, that you must stay positive and that while there is life there is hope. Some one has to be the first to survive longer than 2 years, why not me?
Regards mavis
By: rayandmave on September 26, 2009
at 9:27 am
Great site, how do I subscribe?
By: Kelli Garner on September 30, 2009
at 4:20 am
Hello Kelli.
Thanks for your interest in our site. You dont have to subscribe as you have the link just use it everyday. You are free to post comments as you wish.We have a small web site you can look at if you like it gives an idea of just what Mavis gets upto .rayandmave.co.uk
Best regards mavis
By: rayandmave on September 30, 2009
at 9:07 am
Hello again Kelli.
We have had time to go into your biog. You are so busy and feel quite chuffed that you took timeout to send a comment. we are not film buffs in the sense of the word but we will make an effort to see some of your work. Its a shame today that to be famous you have these people who only see a pair of legs. There is so much more to a woman . Mavis to me has been the rock of my life for 53 years. She is witty kind loves life always on the go everybodys friend . So this devastating blow is so painful and comes as a shock. But she is a fighter and together we will fight this. I hope you return to her blog sometimes and maybe understand why she put it on the web.
best regards Ray and mavis.
By: rayandmave on September 30, 2009
at 9:39 am
It is a good side you have started, but it is hard to read.
I am a girl on 23 years living in Denmark. My father died August 30 this year of mesothelioma. He was 57 years old. My father was sick for almost 1 year before he died.
The lost follows me every single day. I miss him so much.
Keep hoping. It means everything.
I send you and your family the best thoughts and hope that everything goes well for you.
Sincerely, Heidi
By: Heidi on October 19, 2009
at 2:19 pm
Hi Heidi how are you and you family coping this week.
With Christmas coming up it is a hard time of year when you have lost someone.
Keep smiling
Love Mavis
By: mavis on October 30, 2009
at 11:52 pm
Dear Heidi Thankyou for your comment and im really sorry that your father died of this bad Industrial Desease.
I hope you will be able to recover from your loss in time as you are so young and have a whole lifetime to live.
I also return my best thoughts to you and your family– thank you for contacting me.
Love Mavis
By: rayandmave on October 19, 2009
at 4:52 pm
Hi Mavis
This is a great blog. It is good that you can write down and express all your thoughts and feelings. Hang in there Mavis.
Love, Sharon
By: Sharon on October 20, 2009
at 8:01 am
Thanks Sharon
Im glad it has become so popular as it means people are reading and discussing a very taboo sort of subject mainly because we fear Cancer so much.
I did and I wouldnt even call it Cancer for a log time but I have it so Im now facing it head on.
Love Mavis
By: mavis on October 20, 2009
at 9:00 am
Hi Mavis! I´m a peritoneal mesothelioma survivor for two years after surgery and chemos…just never give up! I haven´t been exposed to asbestus. I am from and live in Colombia, South America.
Last week I was diagnosed with a possible tunica vaginalis mesothelioma (on my testicles), and I´m also writting a blog. I´m going to post yours in my one which is tunicavaginallis here in wordpress. So we can keep sharing experiences. I´ll write you later to share more with you!
Sergio.
By: sergioheld on October 27, 2009
at 11:23 pm
Hi Sergio
Just writing to ask how you are getting on.
I dont understand how you got Meso if you wasnt exposed to Asbestos.
I would like o know what Chemo you are having.
Are there any trials taking place in Colombia
Good luck
mavis
By: mavis on October 30, 2009
at 11:48 pm
Hi Mavis! Well, all my treatment has been up in Washington D.C. with Dr. Paul Sugarbaker, specialized on these diseases. First got surgery with Taxol chemo during it, and 3 days after. Then 6 cycles (one every three weeks) with intraperitoneal chemo (Pemetrexed), and IV chemo (Cisplatin). If you want to, take a look at Dr´. Sugarbaker´s website: surgicaloncology.com
Have a nice weekend!
Sergio
By: sergioheld on October 31, 2009
at 10:48 pm
Hi there how are you doing are you ok today,
I have found your blog
http://tunicavaginalis.wordpress.com/
love mavis
By: mavis on October 31, 2009
at 10:51 pm
Wow, not sure what to say. I was just on the internet the other night and found this blog. I was looking up stuff with my sister on Mesothelioma. I was getting depressed because everything out thier to read is sad. My Dad was just told on October 9th that he has this cancer also. It has been a hard to take it all in. I found your site gave me some comfort and is very interesting. He starts Chemo on tuesday and I myself am very worried. All we can do is hope for the best and pray. Thank you for your time, I look foward to reading more. Jennie from Washington State.
By: Jennie on October 29, 2009
at 10:33 pm
Hi Jenny How is your dad doing is he ok.
Love mavis
By: mavis on October 30, 2009
at 11:45 pm
Hi Jennie Im so pleased you found my site and it has helped you to see that life can still be fun.
I enjoy everyday that the Chemo allows me which has been 11 good days that I have done so much in.
Im getting everything done that I can, because I know on wednesday I will be in Chemo for 10 hours and then I will come home exhausted and bloated with 7.5ltrs of fluid, that will take 4 days to clear through my body and then the sickness begins as well, that last’s for 10 days and then wham I will feel better but very weak.
So now you know that your dad will need help until the 10 days are up and then he will be able to look after himself again.
I have tried to get this site away from all the doom and gloom out there as it saddens me so and this is my fight and mine alone–well with a lot of help from family and friends.
Please keep in touch and I will send love to your Dad and hope he travels through this as positive as Iam.
All my Love mavis
By: rayandmave on October 29, 2009
at 11:42 pm
Your blog looks wonderful. It was nice going through you r blog. Keep it up the good work. Cheers
By: Flowers on November 12, 2009
at 3:35 pm
Mavis,
How unfair life is. I was in the Merchant Navy in the 60s and realise now that for most of the time I lived & worked in an atmosphere thick with asbestos as well as all sorts of horrible fumes. And yet…. here I am nearly 50 years later fairly fit – all things considered.
However,in recent years I have been aware that things could at any time.
If/when it does I pray I can face it with the same fantastic fortitude that you have. However being a realist I have my doubts… I know my limitations!!
All my best wishes,
Tim
By: TDG on November 14, 2009
at 7:02 pm
Hi Tim You should realy go and get a scan now as like everything– if they see it early then there is something they can do.
If you have just the Plureal thickening they can start treatment early.
Anyway keep enjoying your life and have a long and happy one xx
All my love mavis
By: mavis on November 14, 2009
at 8:31 pm
Dear Mavis just read about you in whitstable times have been reading your diary I love your possotive attitude towards your illness.I wish you every good wishes for a good and happy future i can image how you are feeling as i lost by beloved twin sister to cancer a year a go she fought to the end,so carry on and all the best.
By: Mary Kessler on May 30, 2010
at 11:59 am
2,000 to 3,000 new cases are reported each year and 10,000 people a year
die from asbestos diseases in the United States.
Asbestos exposure at work is reported in about 70 percent to 80 percent
of all cause of mesothelioma.
By: Mesothelioma Patient Support on September 5, 2010
at 8:46 pm
This is a disgrace have you read it http://www.rightoncanada.ca/?p=802
Kindest regards mavis Nye
By: rayandmave on November 30, 2010
at 10:32 pm
Who do I contact about buying some ad space on this site? Maybe like a banner on either the header or footer. Please let me know. Great site by the way. Thanks!
By: ptz camera on December 11, 2010
at 7:57 am
Just buy my book and I will be pleased as Im trying to raise money for mesothelioma uk
By: rayandmave on December 12, 2010
at 5:39 pm
I lost my brother recently to peritoneal mesothelioma. He was 31 years ago and received his diagnosis in mid November 2010. He passed away on December 20, 2010. We don’t know how a 31 year old who never worked in an asbestos related field or could even be old enough to have been exposed developed this condition. It remains a mystery to us and even as we sort through the grieving process, I am glad there are people that survive mesothelioma and I am happy for you and for your family. You have an amazing attitude and I hope that you are cancer free but I know that mesothelioma doesn’t really work that way. You will continue to be in my thoughts and prayers. I will continue to read your blog so that I can see where you are at today but I wish you the best.
By: Lana on January 25, 2011
at 9:52 pm
Lana i have sent an email to you.
Im so sorry to hear about your brother mesothelioma is a terrible disease.
Stay strong and write your blog it so helps to keep the mind busy and you help others to cope.
Love mavis
By: rayandmave on January 25, 2011
at 10:52 pm
Hello Mavis. I am avidly reading your blog every day as my father who is 67 was diagnosed with mesothelioma in december 2010. He went into hospital to have some results of something completely unrelated and they found a shadow on his lung which was then scanned, biopsied and found to be the big one at stage 2!He is acentral heating engineer and would have worked with asbestos many years ago. We are all trying to get our heads round it as he looks so well and has no symptoms. He has been to St Barts but they were a bit noncommital as to whether we start chemo now or watch and wait. He has the chance of going on a new trial of adi peg/20.I just wondered what you thought of trials and leaving chemo or having it straight away? Your blog is truly inspirational a lifesaver through all this doom and gloom.
By: julia on February 5, 2011
at 6:29 pm
http://www.controlled-trials.com/isrctn/pf/71601938
By: rayandmave on February 5, 2011
at 7:50 pm
Three weeks ago my lovely husband died in hospital in France where we were retired.He declined seriously in a matter of weeks, although on reflection had shown signs last autumn which we put down to winter! or getting older! He died two weeks after his 68th birthday, a slim active man who never looked or acted his age, smoked a little, very little wine. He had served in the Royal Navy from 1960-74 on surface ship and submarines, latterly Polaris. He then went into industry as Works Engineer and finally Insurance Inspector for boilers, pressure vessels etc. He started with a “chest infection” had 1 litre fluid drained from around heart, then they discovered thrombosis in calf, then after innumerable scans, tests of all kinds they removed what they call ‘ganglions’ here in France from collarbone area. He lost weight drastically, vomited, had diarrhoea, couldn’t tolerate food, pain in shoulder blade, blood pressure all over, generally very low. He then lost his voice to a whisper, so even that communication was almost lost to us, the end came suddenly and unexpectedly 15mins after an echograph to determine treatment. We should have been going away to UK in our caravan to visit family, instead my daughter had to come and see her Father in his coffin, we are compiling a file on his past work environment and we are sure after receiving medical records that asbestos is the cause of this awful death. My heart goes out to anyone undergoing the same pain, keep on enjoying your holidays Mave and Ray we didn’t know last Autumn would be our last trip together. I so admire your strength, I am completely broken,so many sad stories.
By: sandragates on May 26, 2011
at 10:56 am
Hi Mavis. I just thought you’d like to know that my dad is currently on the ADAMS trial at st Barts . he was the first one to go on it and up until a few weeks ago the only one as he hadn’t started any chemo and his biopsy showed that he was lacking the enzyme which meant he was eligible for the trial. I just wanted to say that you are right, he is very well looked after and has regular scans and pet scans.
He goes down every wednesday ( my parents live in wales) to have an injection ( in his bottom!) and seems ok so far. His tumour has grown very slightly last time but was told that he is stable and they are very pleased with him. You might see him next time you are down there I’ve told my mum to look out for you and have shown her your picture on your blog!! So just to say good luck!
By: julia on May 31, 2011
at 7:17 pm
Hello! My name is Heather and I am a Meso survivor myself. I was diagnosed at 36. Please email me so we can chat!
By: Heather Von St James on October 12, 2011
at 3:31 pm
Hi my husband was diagnosed with asbestos cancer also did not work with it. Diagnosed July 2010 and had a pleurectomy was given 8 month to a year which was October 2011. He had Pet scan and the oncologist feels he does not need chemo now as he is still OK but when he gets worse he will then start chemo but he is starting to have trouble with a persistent cough – if you have any advice I will appreciate it.
By: cynthia on November 24, 2011
at 6:52 pm
To keep chasing as the cough sounds like its getting worse so I would chase.
Your husband has had the linning taken away mine had gone to far for me to have this treatment.
The Chemo had kept it down for a year and now Im on 2nd line Chemo thats why I could have the trial.
Good like to your husband I know how worrying it all is xx
Love Mavis
By: rayandmave on November 25, 2011
at 6:00 am
Hi also wanted to say that we are from Cape Town South Africa
By: cynthia on November 26, 2011
at 4:12 pm
Hi Hope the chemo works it is so sad to see many people suffering from asbestos I suppose a lot of people did not know when they started using this that it would lead to so much suffering. I feel for all of you that have it. I have to now watch my husband slowing declining and there is nothing I can do but just be supportive. I am writing my own little journal just to talk and put my feelings down not easy to see loved ones leaving us in this way. I sometimes lie awake at night and think if only I could take all that is horrible out and jump on it and kill it things will be OK but of course nothing is as easy as that. To all of you that have mesothelioma or have loved ones with this terrible terrible infiltrating aliens that are invading you I pray for all and hope that someday there will be way to alleviate all this terrible suffering. But I must say my husband is very positive and that is important we all just have to hang in there and be supportive to all.
By: cynthia on November 26, 2011
at 4:10 pm
No we didnt know how dangerous in the 50.s and 60′s that Ray was working with deadly Asbestos what it would do to our future and I lived such a long time with the fibers in my lung.
You have too have positive thoughts and i hope your husband is Ok we are all brave warriors as we fight this together and hope a cure is around the next corner.
Love mavis
By: rayandmave on November 27, 2011
at 4:24 am
Hi Mavis
Just good to have some people to talk to. Great to have such brave warriors. Just let us all keep in touch and give each other support and love.
By: cynthia on November 27, 2011
at 3:19 pm
I did send an email did you get it???
By: rayandmave on November 27, 2011
at 6:38 pm
yes I did and thanks and I have tried to add you on facebook hope you received that it will be great just talking. Thanks Cynthia
By: cynthia on November 27, 2011
at 6:48 pm
I haven’t had a request yet can you email me your full name and I will trya and find you on facebook as there is so much help and its all private xx
By: rayandmave on November 28, 2011
at 6:19 am
Hi again my name on facebook cynthia roets. Thanks for coming back just to get more details as I have read a book ” Lean on Me” by Lorraine Kember but there is so much more one needs to know – I have been on website to website some are good and some are so depressing that I think too much info is not good. I am a secretary at Nuclear Medicine and we did the scan PET on my husband so the Professor could explain to me what they saw on the scan but no one will tell you what is still lying ahead.
By: cynthia on November 28, 2011
at 5:21 pm
I am pleased things have gone so well for you. My mother passed away from Mesothelioma about 34 years ago. It was the dark ages of cancer treatment then and she was at a very advanced stage when it was discovered. In the past few years I have heard of a few people beating it and it always brings great joy to know that someone is beating this beastly disease.
By: Another Boomer Blog on December 19, 2011
at 12:07 am