Friday, 31 October 2008

Halloween get together!

I arranged to meet my friend, Helen this evening. Kieran is good friens with her son. They went trick or treating and then I took Kieran to his dad as he wanted to see him as well.
I returned to my Helen's house. Her other son has made friends with another lad in his class and his mu, Carolyn, is a good friend of ours as well. It was good to see her as I had not had a good chat with her for a long time.

We had a giggle when Helen put on her were wolf disguise. It was a fun night. The children enjoyed it very much. Helen's husband put on the were wolf mask and looked a real fright with a witches hat on.
Kieran enjoyed trick or treating, He did it twice and got a lot of booty which will keep him going till.....tomorrow!
I wnat to have a halloween party next year. That will be one of my challenges now...........Halloween 2009, here I come!!

Happy Halloween

Kieran and I are off to my friend Helen's tonight as he wants to go trick or treating with his friend.


I have been busy sculpting a pumpkin which I do enjoy but never seem to have enough time to do them. I managed this one which is pretty foul, I am sure it will bring a few smiles to faces, especially the children as they seem to enjoy the more disgusting pumpkins!


I will add another blog when we get back and hopefully have some pictures.

Thursday, 30 October 2008

Car sorted, eyebrows not sorted and a grand time had by all!

I got my liitle cars battery sorted out this morning. She is running a lot better now. I went to see Theresa about my eyebrow and we decided that I should leave it for 6 months as the colourwasn't taking very well. It could be to do with the Mistletoe therapy as that has really boosted my immune system.
I did a bit of shopping and even purchased some new Christmas tree decorations. I have decided to put my tree up when I come back from Germany.
Not sure what the kittens will make of it though.
I went out for lunch with my friends this afternoon. We also went to the cinema and saw Ghost Town with Ricky Gervais. It wasn't too bad but was spoilt by from silly little 12 year olds who were so noisy. they were drinking through a straw loudly and gerally being a nuisance. They were asked to be quiet but this made it worse.
When we came out, I had a parking ticket because I was on the edge of the lines in the parking bay. I am going to appeal as I didn't know that rule and 98% of my car was in the bay. I came home and settled down for the evening. It is halloween tomorrow and Kieran will be going over to is friends and later will see his dad. He has a skeleton outfit to wear.

Wednesday, 29 October 2008

Wahay.....3 days done.

I have finished my 3 working days  this rotation and it has been a good day. The start was a little hit and miss this though, my little cars battery gave up the ghost due to the cold weather. I called out my mechanic who jump started her for me. Most of the team dressed up for halloween and a team meeting thrown in made it even more enjoyable.
Tomorrow is a busy day with sorting out my little car, I have to go to the garage and get a new battery and then off to Theresa for my eye brows having a top up tattoo. The afternoon may be eventful as I am going out with my friends and I think there are going to be a lot of peeps there.
Friday may be mine but we will see. 
Rich didn't get the job he went for today as he didn't type as fast as they wantted. He is going to apply for Orange again and hopefully get through.
If not, he will be getting what ever job he can. He has been out of work for 3 years now and at 19 needs to be supporting himself.

Tuesday, 28 October 2008

Tired today

I have done another shift at work today and feel tired this evening. I have been seriously thinking about giving up work but, who will provide for the children? I don't want to give up work as I enjoy socialising with the people at work.
I have some lovely customers who come through to the call centre, then there are the ones who call in and no matter how much I try and help, there is no pleasing them. I have had enough of swearing and not listening to why things happen.
Thankfully, the good calls out way the rotten ones.
I may feel differently tomorrow, I think I am tired and feel that some times, I don't want to listen to trivial problems as there are more important things in the world to deal with.
Thats my rant over!!!! :)
I have done my mistletoe jab this evening....40mg.... and I am getting better at it. I am impressed with how well I coped this evening. I have one stubborn vile they won't be opened...no matter how I try, I can't break it. I have until October 2009 to master that one!
I also found out that the bubbles in the syringe are harmless if it is a subcutaneous injection. It is only dangerous when injected into a vein. That was a relief to find out.

Kieran will be back tomorrow as his dad is working tomorrow. We do opposite shifts in Orange.
Richard has a job interview in the morning and I have my last day a work for this rotation. I have got a lovely top that I ordered and will wear it tomorrow as I am not working on 31st October....Halloween!!!
I will try and get some pictures of my team mates if they dress up.

Monday, 27 October 2008

First day of rotation over.

Well.....thats one out of the way!!
I am feeling tired after my 10 hour day. Rich went to the Drs and got the bandage off his thumb and that is now healing nicely. He has moved back in the house and is going for a job interview on Wednesday. Hopefully he will get it.
We will have to think about moving next year as we only have a little 2 bedroomed house.
I am sure we will cope.
I haven't heard from James the DIY guy for a while. He has been so busy. I will contact him after I come back from Germany in November if I don't hear from him before.

Good morning

I am back to work today, I am going to take my cat headband in with me as I won't be in on 31st October and it doesn't look like anyone is dressing up this year.
I did my mistletoe last night, I did it yesterday as I was away on Saturday. Talking of being away, I am adding some more fun pictures that were taken at Paradise park.
Kieran as gone ff with his dad for 3 days, It is half term and he will be taking in a bus tour n Tueday.....lucky dad!!!

The pictures below remind me of the old sea side post card pics.
This was great fun and we should have taken a lot more.
Do you have a caption for any of the pictures? Add the number of the pic and the caption, email me and I will add it to the blog. Phu_phita@hotmail.com
1. Kieran as the farmers wife.
2. Deb as farmers wife and Kieran on donkey
3. Cross Deb as farmes wife and a worried Kieran
4. Sue as the farmers wife and Deb liviing it up on the pig.

Sunday, 26 October 2008

Back from Penzance

Sue and Jenny with Kieran.

Kieran and I arrived back in Plymouth from Penzance at 3:50pm today. We have had a lovely few days with Sue.

She is off to Australia next month for 3 months and if she decides she likes it, she will stay.

She has a daughter there and it is important for her to be close to her as she has lost both of her sons to Mesothelioma.

We had a lovely day yesterday, we went to Paradise park which has exotic birds and has farm animals.

Saturday, 25 October 2008

Good morning from the Lizard in Cornwall.

Kieran and I had a lovely afternoon with Sue and her little dog, Jenny.
She has made us feel so welcome and she hasn't stopped taking care of me since I got here.
She has had a terrible year after losing her son, Michel.
Kieran and I enjoyed seeing Jenny the dog throw her biscuits around the room before eating them.


We are off to the Bird park today which will be nice. Kieran has loved the train trip and staying at Sue's house.


Harvest Festival at Plympton St Maurice church with Kieran (Bruno Tagliatelli)

We had a great day yesterday, Kierans harvest festival was beautiful and his classes take in Strictly come dancing was brilliant.
His class did strictly come dining with Len goodfood, Craig Brevell-Horwood, Arlene Fillet and Bruno Tagliatelle (Kieran).
We had another filming session with Kristy and Gary who accommodated Kieran with how to use the camera.
They were lovely and took time to get to know us and integrate their schedule with ours.

Thursday, 23 October 2008

Meeting Gary and Kristy.

I had a couple hours off work today to start packing for Penzance. I also met Gary and Kristy this evening who interviewed me about My life and how Theo and I get along with the disease.
It was very emotional as I have been feeling so positive lately, some of the questions have not crossed my mind. I was asked about what I would lose most, no hesitation, my babies. tears streamed down my face and I could hardly talk as I welled up with emotion. I also found talking about my dad hard but I managed to spill out some words about how I feel he is still with me.
It was a very emotional interview. I will be meeting them again tomorrow as they want some footage of us getting on with life.
Kieran has his harvest festival tomorrow which will be lovely. He is performing in a play called "strictly come dining" and he is playing the part of Bruno Tageltelli. Should be wonderful!

Wednesday, 22 October 2008

Tired today

One more day to go and then 3 days off Kieran and I will be going to Penzance for a couple of days which I am looking forward to.
I am also meeting Gary Simpson tomorrow to talk about Mesothelioma and how it has affected my life. It will be good to meet him after all the conversations we have had.
Work has been busy as there have been a couple of transmitters down.
My new team are getting to new each other and we will hopefully have a team meeting to get to know each other better.

Tuesday, 21 October 2008

Mistletoe tonight

I am tired today, I stated work at 10:00am and finished at 8:00pm this evening. I am settling in on my new team and enjoy work, at times it is quite tiring. I haven't been doing my flax seed for a few weeks and I need to get back into it.
I took my Mistletoe this evening. A 40mg injection today and 20mg on Saturday. My hair is growing back and it is in colour, not grey!
I have had Alopecia for aound 4 years and there have been patches, large and small, where hair has fallen out but I have never lost all of it. It started to growback a few months ago and was growing back grey but all that has changed. It could be to do with Theo moving out and the mistletoe educating my immune system to attack the cancer rather than itself. I have one dilemma now...do I keep my hair or my wigs?
I have decided to grow my hair and see what it looks like but if I don't like it, I shall shave it off and go back to my wonderful wigs.

Monday, 20 October 2008

Silk painting

I went to Kieran's old school this morning and did some silk painting with 2 classes. I outlined some egyptian themed silks and gave them to the children to colour in.
They really enjoyed it and made some wonderful designs with the paint and added salt to create patterns with the paint.

I will be going back again to do the same thing for the girls club.
After that, I dropped some clothes into a charity shop and did some shopping. When I got home, Siobhan, Seddon and Rich were there.
We are still struggling to get on top of the house work after the decorating.

I had a phone call from a colleague of Gay Simpson today. Gary is looking for Mesothelioma patients and carers to talk to about Mesothelioma. They have made an date to visit my house next week (30th October) for a short interview.
Anyone interested can find Gary's email address in the NEWS page on the front of the blog.

Friday, Kieran and I are off to Penzance to stay with Sue which will be lovely I am sure.

Tomorrow I am back to work, first of the 3 days.

Today has been very wet, we had a giggle as we watched the kittens discovering rain for the first time. They were so cute, shaking their paws and dodging the raindrops.

Sunday, 19 October 2008

Sunday, lazy day

I caught up on some housework today at last. Kieran and I went out to see his friend, Stephen and my friend , Helen this afternoon. I got some of the silk painting outlines ready for tomorrow.
Helen caught up on her ironing and the boys played a game on the wii system.
It has been quite a nice afternoon. After we left, I was asked to take a detour past the bust station so Kieran could have a look at them.
He was so pleased that he could see them and it may have took a bit longer to get home, but his face made it worth while. 
He is back to school tomorrow and seems to be enjoying it very much. 
He will be off to a farm for a week in November which he is looking forward to.

Saturday, 18 October 2008

Bus tour today

Well.....for a change, I took ALL my children in town today and it was wonderful. We went to Thornton's coffee shop for a chocolate drink and a cookie which was really nice.

We then went and picked up the bits I wanted for school on Monday and then to the city centre for the bus tour.

I still don't know what the fascination is with buses but Kieran loves them.

Siobhan went off to her college group, Rich, Kieran and I came home.


I fell asleep with the kittens this afternoon and was a bit annoyed that I didn't get the house work done.

It has been lovely having all the children together this weekend.

Richard has gone out with friends this evening and will be sleeping over at their place.

I don't know if we will see him before 1 st November as I am taking Siobhan out to eat. She will be 22 on the 5th November and I will be in Germany for my 5th treatment.

She has been very good about it and is happy to celebrate her birthday on another day.

Friday, 17 October 2008

What a long day!!!

My son, Richard, came over yesterday and had a very sore thumb. He had cut it on a mirror at his dads and had not gone to hospital to get it cleaned up. I went to work this morning, Richard slept over last night, and when I cam home, I picked him up and took him to casualty. We were there for 2 hours!

He had gas and air as his thumb was badly cut although it was only a flesh wound.


He was very brave and started laughing after inhaling the gas and air while the nurse sorted out his thumb.


We got home about 11:00pm, Kieran and Siobhan were in bed. The kittens were awake though and were there to greet us when we came in. I am off tomorrow....yaya......my 3 days off!


I will have a lazy morning before I go into town to get some items for silk painting at Kieran's old school on Monday and no doubt, I will take in a bus tour with Kieran!

Wednesday, 15 October 2008

Back to work

I started my 3 days working today. I like my new team but I do miss the old one. I have to walk from one end of the call centre to the other for breaks, my 30 minute lunch break turns into 20 minutes by the time I get there : )

Kieran and his dad went to a meeting at school. He is going g away on a farm visit in November. He will be staying for a week and working!!! I am sure he will be fine. I am going away for a few days with friends that week. It will do him good I hope as he will have a lot of work to do. The children are up and out to work by 7:30am......mmmmm .


He had a great time with his dad on Saturday. He went to Plymouth railway station and had a trip on a train as a treat for doing so well at school. I am taking him out on a train next week and I am sure we will include a train tour.


I did my mistletoe jab last night and need to get back into my flax seed again as it does me so much good.
The kittens are lovely although they take advantage of the doors being open and make a run for it. They will have their ops in November and will be allowed after that. Cookie is the worst, she is so full of adventure but easily caught as she will chase anything that looks like fun.

Tuesday, 14 October 2008

Kieran's parent evening

It has been quiet today, not a lot gong on. The kitchen is finished....yay.... and James will finish off the bathroom tomorrow. I rang Dr Maurice Orange today. He and Dr Maria work at the Park Attwood clinic. I told him about my latest news with Theo and he said he knew some of it as he had been reading the blogs.
I told him I would be sending some information to him from Professor Vogl as he had sent over images on CDs of the CT scans and the....wait for it.....fluoroscopic images of the arterial embolization..... That was what my oncologist asked for : )
After tyhe phone call, I went to Kieran's school as he had parents evening. He is doing very well and had been nominated star of the week by his class mates for his hard work. I felt so proud of him.
I asked if he could have the rest of 24th October off as he has harvest festival in the morning and we are off to Penzance in the afternoon. Yes.... we are going on the train and I am sure we will have lots to talk about.
We are going to stay with Sue who has become a very good friend. Sue lost her 2 sons to Mesothelioma and is very supportive with my success as are others on the site who have lost loved ones.
It is so good to have them with me as it must be so difficult to go on knowing what I know now.
If I had my way, I would have a time machine which I would go back and save them all, unfortunatley, I don't have one so I carry them all in my heart and take them to Germany with me. They are still fighting, they haven't given up and niether will I.

We have taken the travel insurance link away at the moment as we are trying to find one that won't charge the earth.
They are called Medi travel and seem better than the one David tried who wanted £3,000 for 4 people for 4 weeks!

http://www.insurecancer.com/

If anyone hears of any others, please let me know and we will add them.

Monday, 13 October 2008

Travel insurance

Siobhan has removed the travel insurance link as David has contacted some of them and they weren't very keen when the "Mesothelioma" word was mentioned. One compay quoted £3,000!!
We are looking for more reputable ones and Heather suggested looking on the McMillan site so I will check them out and add them as they may be better.
Travel insurance is the one question that always comes up at the Mesothelioma UK meeting and as yet, there is little information.

James has built a lovely breakfast bar in my kitchen. It is beautiful, he stayed until 8:00pm to finish it and it is perfect. Kieran asked if there were any breakfast bar stools as he wanted his tea sat at it. I told him we hadn't got them yet, he is so excited about it.
Thanks James, your such a star.

Sunday, 12 October 2008

Message board removed

Siobhan has removed the message board from the site. We both decided that it wasn't used and we didn't really need members to sign up as the site as the information is on the main site and the guest book has been successful.
I am also going to write about my chemoembolization adventures in a link called "a post card from Theo".
It is underneath the holiday and mistletoe diaries blog.
I think it will be helpful to have the information in one place rather than have to trawl through the diary.
There are other links in the information part of the site. Chemoembolization, mistletoe therapy and a link about travel insurance which always comes up at the Mesothelioma patient and carer day meetings. It details some insurers that may support someone with cancer as the first thing you need to do after diagnosis is to relax and try to come to terms with it. This is impossible to do but, having a break help the situation.
If there is anything not on the site and you think it should be, email myself of Siobhan and she will add it.
Thanks again to all the supporters of the site, it makes it all worth while.

3 days off

I am off today and back to work on Wednesday. Kieran has parents evening on Tuesday, he has been coping very well at school. I am getting to know my new team mates. The Orange cat was in the garden yesterday. I am going to give him a name rather than the Orange cat, he will be called OJ for the purposes of the blog. OJ obviously meaning Orange Juice.He was very settled in the garden and was enjoying the sunshine. He is a very friendly, cuddly cat and enjoys the company and the fuss he gets.
I am not doing much today, just tidying around as James will be here tomorrow to finish of the decorating.
I shall be glad when it is all done as we have had months of having rooms turned upside down. We probably won't be moving now as the monies for the move have been and will be spent on my treatments and airfares/hotels.
It has been money well spent and I am happy in my little house. My only issue is that I don't have my own room, We have coped this long. I am sure we will cope for longer., after all, I didn't think I would be here!

Friday, 10 October 2008

Reminder

Just a quick reminder about Gary Simpson. He wants to talk to Mesothelioma sufferers with a view to document the information. I have added his email below. Please email him if you are interested.

I’m researching people’s stories about mesothelioma with a view to documenting them. I’d love to hear from and if you’d like to share your story please drop me a line at garysimpo@hotmail.com

Many thanks

Gary

Orange Cat!

Work was good today still missing my old team mates though. There is a cat that has taken to coming in the fung shui garden in work. He has been adopted by the employees at Orange call centre and has his own box and umbrella to keep him dry, he even has cat food!
I don't know his name but I thought I would include him as he is so lovely. He belongs to one of the neighbouring houses but loves his temporary home in the garden.
I have added a picture of him settling down in his shelter....cute!!

I have added a picture of Kieran with his kitten, Stork. He loves his new friend and laughs at him and his sister so much when they chase each other around the house.


I received the CDs from Professor Vogl yesterday and was amazed at the difference between the first images in May and the latest images. It is brilliant. I am going to take them to my oncologist as he wants to study what Professor Vogl has done. Hopefully it can start moving forward and try and get some trials here as the medication used it recognised in the UK and only the procedure is the problem. It is performed in my local hospital for liver cancer.

Thursday, 9 October 2008

A great day today

I went to work this morning and met my new team. I really enjoyed the day and the team seem very nice. My team leader is lovely and has told me that any problems I have she will support me. That is so good to know. I was a little upset on the way in as I was driving to work, a saw a beautiful cat that had been knocked down. I parked up my car and called the RSPCA to report it as he had a blue collar on and knew he would be someones family member. I couldn't stop my car as the cat was on a slip road coming off of the dual carriage way. someone is going to be sad tonight.
Kieran got 25 merits in school for his work, he earned stars for doing well.
He seems to be more settled this week. My DIY guy should be here tomorrow to finish off my bathroom and then it is only the kitchen to finish off and we are done.
I had a lovely email from David, another Meso sufferer and asked him if I could share it with the others who read my blog as it brought a smile to my face. He said I could so here it is:

"I have a really warped sense of humour and I know that along the way I may have upset and offended some people with the things that I have come out with, but it is my way of dealing with things.
My best moment came about 6 months or so ago, when my partner sent me off to do some shopping and as I passed by a funeral home, decided to go in and prebook mine. I was greeted by a very sombre lady who asked if she could help, and I said that I had come to arrange a funeral. I was taken to a side room and she started asking questions, the first one being "May I have the name of the deceased please", to which I replied "I haven't died yet", I could see that she wanted to smile or laugh but still tried to contain her composure. I was then asked if it was to be burial or cremation and I said that I wanted to be buried. As time went on she asked my why I had chosen burial over cremation. "I replied that I did not want to be held responsible for holding the traffic up on the A14 going to Cambridge Crematorium" This time she smiled and a small laugh emerged and she said that I had a dry sense of humour. I told her that it was graveyard humour. I left there feeling glad that I had saved my family any problems and deciding what to do

Thanks David.

David has named his tumour Oma. anymore names for tumours? Email me and we will add a list of them.

Wednesday, 8 October 2008

Mistletoe tonight

I did the 40 mg of Mistletoe on Sunday night as I got back from Leeds very late Saturday night. Tonight I will do my 20mg and try and get my head around the fact that I am sticking a needle in myself!
When I was very young, I would scream and kick to have an injection, how times have changed. I have to make another appointment with Dr Maria as I forgot to call her last week. It is good to talk to her as she is also very interested in the treatment I am having in Germany. I am going to book myself into Park Attwood after Christmas as they are so good at the clinic.

Last day off, back to work tomorrow.

I am going out to lunch with friends today after a coffee morning at Kieran's old school.
I am back to work tomorrow and will be on a brand new team. I am going to miss my friends, I will still see them at lunch tim and break times bit won't be sat with them.
My new team will be lovely i am sure, It is because I was so settled were I was and i loved my team leader and Help Desk Manager. I will have a new team leader and HDM who, I am sure, will be great.

Tuesday, 7 October 2008

Appeal to Mesothelioma patients/carers

I have been asked by Gary Simpson to appeal to anyone who is interested in speaking to him about Mesothelioma and how it affects lives.
Gary writes :

Hi

I’m researching people’s stories about mesothelioma with a view to documenting them. I’d love to hear from you and if you’d like to share your story please drop me a line at garysimpo@hotmail.com

Many thanks

Gary

Cats, cats, cats

Here is Fluffy's latest bed. Suzanne said he has made this his new home.
He has become quite a little star on this site.
The Kittens, Stork, The ginger one (named after a cartoon character in one of the shows Kieran likes) and Cookie, the torti, are very settled in their new home.
They have crazy moments when they beat each other up and run up and down the stairs to the joy of Kieran. He laughs so much at them. When tey go up stairs, I ear the occassional shriek fro Siobhan as they run across her art work. They are lovely.


It's official......

Yes.....I am going through the menopause and this morning I went to see my GP and he has started me on HRT : (
He asked me how I was with horses? I said I got on well with the 10 in my back garden : )
Apparently, horse urine is used for the medication and they were treated quite badly in Italy. I was given a choice and chose to stick with an alternative.
I had my flu jab today as well, I have it every year. I bought Kieran some new sweat shirts as his are at his dads place. He won't wear the jumpers I bought him as he says the are for girls!

Monday, 6 October 2008

3rd Mesothelioma patient and carer day 2008 - Report

Picture Jill Morrell, Myself and Kimberley Stubbs

The event opened at 9:45am with Helen Clayson welcoming everyone to the meeting. Helen also made all the speakers aware of her watchful eye being on the clock. She also advised that 2 3rds of the audience was made up of patients ad carers and their families. Helen is the medical director at the Hospice of St Mary of Furness in Cumbria.
She introduced Kate Hill as the first speaker.
Kate Hill - Trustee of June Hancock Mesothelioma Research Fund
Kate advised that the research fund had been active for 10- 11 years and had raised £500,00 towards research. She said the fund had also called for a global ban on asbestos.
She introduced Kimberley Stubbs and Russell Hancock who are June's Children and are also trustees at the research fund.

John Edwards -
Consultant Thoracic surgeon, Nothern general hospital, Sheffield-

TREATMENT FOR MESOTHELIOMA
Dr Edward's explained what Mesothelioma was and how it progressed and affected the patient.
He also told how there was knowledge of the dangers of asbestos 100 years ago. It even goes back to Greek times when the slaves who worked in asbestos mines were not bought as there was a history of lung ailments. The Greeks knew they didn't live very long.
Dr Edwards also talked about treatment options. Surgery, radiotherapy and chemotherapy.
He also talked about the trials and how they were done.

PHASE ONE - Is the treatment safe?
PHASE TWO - Does it work?
PHASE THREE - Is it better than any new or existing drugs?
He said that paients should consider trials as

"we stand on the shoulders of patients that came before us"

Which means it isn't just the patient who could benefit, it could benefit future patients.
The benefits of being part of a trial are :

* New non standard treatment.
*Support teams closely monitor patient.
*First to benefit and benefits future patients.
*Hospital visits are more fequent.

He pointed out that compared to some cancer trials that have over 4000 trials, Mesothelioma has only had 9.
Trails available and furture trials are :

*Alimta and Cistplatin V Cistplatin alone.
*Radio therapy - to determine if nodules are stopped from growing at the wound site after a VATs op.

Photodynamic therapy didn't work
No phase three trials have bee done to date.

Symptom Control

VATs (Video assisted thorascocopy) Talc Pleurodesis.

Debulk te tumour mass

Improve breathing

EPP (Extra Pleural Pneumonectomy)
Removing the lung as long as the lymph nodes aren't affected.
This is a very big operation and the patient has to be in very good health. 10% of patients are selected very carefully. 6% suffer fatal complications and 50% suffer complications.
Dr Edwards asked "should it be performed"?
This is a MARS trial and as yet there has not been a phase three trial and surgery is only avalable in certain parts of the country.


WHAT CAN YOU DO?

* Take part in trials.
*Ask for access to trials.
*What are the opinions of centres of experience?
* Is there a specialist Multi Dicaplinary team (MDT) in the local hospital?
* Are you prepared or well enough to travel?
*Promote the trials.

Dr Edwards said what all Mesothelioma paients say, "Patients don't want money, they want there lives back". He said more money needs to be put into research for Mesothelioma and advised that it isn't just the UK but other countries. 300,00 tons of asbestos had been shipped to India.

Dr Jeremy Steele - Consultant in Onclogy, St Bartholomews Hospital, London and Chair of Mesothelioma UK.

CLINICAL RESEARCH FOR MESOTHELIOMA

Dr Steele explained what asbestos was. He showed pictures and explained that it was a rock, woven and milled into powder. In the developing world, Bombay in particular, people still lived in asbestos fibre board houses.

Why does it cause cancer?

Fibres are breathed in and sit in the lung. The body tries to remove it, the finre is too big for the cels to break down and too small to be coughed up. He equated it to having a splinter in the finger. The area affected becomes inflamed. Cytokines respond to the disease and try to heal and repair the body. This makes things worse as the cells start to turn to cancer.
It also changes the DNA in the body.
Attitudes have changed towrds Mesothelioma, PET scanning is done which is a sugar based dye which shows up the cancer cells on the scan. Cancer cells get very excited with sugar.
Again Dr Steele advised that there needs to be more funding in to researching this disease.
He said there should be a national tissue bank which would store biopsy tissue for future research. Australia has a 2,200,000 budget for research into Mesothelioma and the UK needs to follow this. Development of drugs that reverse the asbestos damage and fid what makes the cancer grow.
There should be a national asbestos disease research centre and a national programme of clinical trials.
It was so good t hear 2 Dr's who want the best for their patients and are prepared to head the fight.
Picture Me with Diane from HASAG

Geraldine Coombs - Solicitor

OBTAINING COMPENSATION
Geraldine Talked about legal rights and compensation for Mesthelioma victims. She said there were specialist judges to evaluate claims. The suffere should have the following information:
*Work history to identify exposure
*Work inforamtion to trace the company/insurers
*Detailed witness statements
*Inland revenue will have history of employment

She talked about people who had noteboos with asbestos sheets wriiten in the order.
If the company has gone out of business, the insurers should be tracked down.
Put out appeals to witnesses/employees who maqde have worked for the company. This can be done through news paper adverts.

the USA have a trust (Manville) for claimants which the claimant gets 5% of the payment.
If the person dies before the claim has gone through, the widow/child can carry on. Sme solicitors have aq "no cost to you" service. Provng the claim is the most important so the more information available, the better.
If you are self employed, there is no company to sue.

Patients Experience

David Garrood
David is 74 years old and doesn't look it. He talked about how he was diagnosed in August 2004 with a tumor in his abdomen. He was given 12 months to live. He had 6 treaments of Alimta between October 2004 and February 2005. He has a factor AF2 treatment in Germany which is for maturing cells to fight the cancer and takes Mistletoe 3 times a week. His wife does it has he is sqeemish. His GP calls him his "miracle man".

I was very impressed with David especially as we were both takng the mistletoe and going to Germany for treatment.

Debbie Brewer
I spoke about my experiences. As Helen say, ME- sothelioma it was all about me.
I am not going to detail it as it is all on the site.
I did get a lot of feedback as I had my good result from Germany (33%)

Overview of benfits for Mesothelioma

Tony Whitston- Greater Manchester Asbestos Victims Support Group, Representitive Asbestos support groups forum

Tony talked about the new lump sum payments for mesotheloma sufferers.The payment depends on the sufferers age at diagnosis. The older the sufferer when first diagnosed, the less the payment.
He talked about the DLA and AA payments.
He said that compensaqtion payments are used as income replacement and this shouldn't happen. He asked for the DWP to follow the Barrow jobcentre and remind patients to claim their benefits as elsewhere there is no reminder.
The link below has more information.
http://www.benefitsnow.co.uk/industrial/constant.asp
Another benefit is Exceptionaly severe disablement benefit which you can get if you recieve the CAA benefit above. The link below will detail more information.
http://www.dwp.gov.uk/advisers/db1/esda.asp
Careres Allowance is means tested and you will lose it if you earn over £87 week. More info below.
http://www.carersuk.org/Information/Financialhelp/CarersAllowance

Diffuse Mesothelioma Scheme
*12 months to claim from date of diagnosis.
*12 months for next of kin to claim from date of death.
*Circumstances may allow claims after the dates depending on information.
*USA payments can cause problems
The goverment stance on insurers and payments needs to be changed and the insurers need to pay 100% of the compensation.

Jill Morrell - head of public affairs British lung foundation

Campaigning for Mesothelioma

Jill advised that BLF have 70 employees, there is a 5-6 million income each year. They work for anyone affected by lung disease. They support patients, raise awareness and campaign for changes. They fund respitory nurses and have a national helpline. 1 million is spent on research and mesothelioma research has been funded by them at a cost of £415,000 which was used for a cancer vaccineand for more inforamation about Alimta. Lung disease is a low priority for the goverment as it has the stigma of smoking attached to it. They are committed to making a difference and have successfully campqaigned for the Mesothelioma charter. There is a national day in February, Action Mesothelioma Day.
If there are any comments, email them to campaigning@BLF.UK.org.

A cheque was presented to the June Hancock Research Fund by Susan who lost her husband, Alan to Mesothelioma. Her family decided to do the Jane Thomlinson Leeds run and raised £1,260. This was presented to Kimberley and Russell, June's children and trustees of the fund.

Linda Reinstien Executive and co-founder of Asbestos disease awareness organisation
Asbestos-the global issue and developing a matrix of care
I missed some of Linda's talk as I was being interviwed by a radio reporter.
I caught some of it. Lnda had lost her husband and was quite emotinal but talked with dignity and pride about him. Her message was "don't do what I did" as she didn't have any help as a carer when he was ill and suffered for it.
She was a lovely lady who had travelledfrom America to be at the meeting.

Michael Lees- Author of the report "asbestos in the classroom"

Michael's wife, Gina had Mesothelioma and has since passed away. She worked as a teacher and was exposed to asbestos in the school she worked in. She was 51 years old. She died 8 years ago. Micheal explained that asbestos was used at its peak between 1945 and 1974 and is in all schools built, refurbished before 2000. It was used in large amounts. Michael talked about the different asbestos fibres:
*Chrystolite-causes Mesothelioma
*Amasite- 100 times more dangerous
*Crocidolite- 500 times more dangerous which contradics a letter Suzanne sent me from the telegraph saying that not all asbestos was dangerouus and the person could remove it from his garage himself and contact the council for details of where to take it. No need for the men in white coats, it said (?)
Apparently there is no known threshold so there is no known risk (?)
*Ceiling tiles in schools that are not ceiled in the gaps can produce dust.
*6,600 fibres are released with a drawing pin in an asbestos notice board.
The goverment says it is safer to leave asbestos in school undisturbed. Head teachers have no knowledge of the dangers and is a foreign language to them. 21 teachers have died between 1980 and 1985 and this is climbing rapidly. The goverment stance is that any commisioning surveys may provoke un neccessary panic. What Michael said was that if parents werte told, their children would kick the walls on purpose to produce the dust.
Michael wants :
*All schools to have a thorough asbestos survey
*a nationwide audit of schools
*phased removel of asbestos in all schools.
*write to schools asking to see their asbestos register/survey.
* It will all come under the freedom of information act.
Website details http://www.asbestosinschools.co.uk/

Helen Clayton
Understanding reatlessness and pain in Mesothelioma

Helen talked about the limbic system which displays and controls emotion. It is activated by breathlessness. Breathlessness means a threat to life, suffocating even death.
Medical management would be to
*remove fluid and prevent reoccurrence. To maximise the lung function with medication and excercise.
*Reduce the tumour bulk in some cases.
*reduce perception of fluid by using morphine which reduces affects on stretch recepters. It tricks the brain into thinking there is no shortness of breath.
*Oxygen is only of value when oxygen is low
There should be an individual management plan and rehabilitation. Complementary and creative therapies can be used.
*Involve carers and family members and explain how to assist
A fan will reduce breathlessness because ofa the receptors in the face, hand help are better.
Stimulation of these nerve receptors send signals to the brain.
Paqin, the tumour is highly inflammatory and is a frequently complex pain. If the pain can't be controlled, seek expert help. There is a procedure called Cordotomy which cuts the nerves and numbs the area which has most pain, this is NOT reccommended.
What's ahead
*Nasal Morphine
*heat patches/pressure sentive packs

"It's not just about pills"

Natalie Doyle- Nurse consultant, rehabilitation,Royal Marsden hospital, London.
How to keep control
Mesothelioma is a whole new career, fitting in more time with friends and family as they call and want to meet up more than before.
Let these people help, they wouldn't ask if they didn't want to.
Your worth it, as knowledge increases, anxiety decreases. Be dignified, If it works, it's right.
She had a quote from Oscar Wilde
"Nothing is worth doing except what the world says is impossible".
Travel insurance was mentioned and there is more information which I will find and add to the blog.
Picture Graham Sherlock-Brown and me
Graham Sherlock Brown was the patient speaker at last years events and talked about PETAL.
Graham is a surviver of 6 years and had an EPP (Extrapleural pneumonectomy) which means he had his lung removed.
He uses PETAL which is an acronym for
P = Positive attitude
E = Eating and excercising well, (Graham does pilates)
T =Targets
A = Adapting to change
L = Living your life.
He was very inspirational and it was good to meet him and see that he is still dioing well.

There were questions and comments from a few people, not many as I think all questions were answered during the day.

Sunday, 5 October 2008

Back to the grind

The Mesothelioma 3rd patient and carer day meeting was excellent. Like last years event, there was a lot of very good information from patients carers, health professionals and medical professionals. It was a very positive experience and I met some inspirational people.

Kim and Russell, June Hancock's children, Chris, Mick Knighton's wife, Diane from HASAG, who lost her father to mesothelioma. She and her sister run an asbestos support group in hampshire and Jill Morrell who most people remember all her work with freeing John McArthy and Terry Waite.
They all have taken Mesothelioma by the throat and told it who is in charge. They are truely inspirational.

My friend Helen and I had a meal in the resturaunt on Friday night and it was so cold that we were warming ourselves with the heat from a tea light candle on the table, the pictures shows Helen's take on the little match girl : )
Helen has been a wonderful support, getting me lunch when I was busy with people wanting to more about my procedure. She has been amazing and has also had a break from family life as her son and my son are both Autistic and are good friends.
We had quite along journey back to Plymouth. the weather wasn't great but Ian, the driver, was impeccable.
We got about 1/2 a mile to my house when his car engine cut out. He had enough petrol to get us home but being on a hill the petrol slipped to the back of the tank. He was a real gent, he quickly ran to his wife's car that wasn't far away and took us to my house. He wouldn't hear of me taking my car and following him so he only had one journey. He insisted he get us home first.
Thanks Ian, your a star. We had a lovely journey back listening to prog rock and Slade.

I will post a report of the day tomorrow as I am back to work today.

Thanks to all those lovely people I met yesterday, If I give you a mirror, look into it, you will see true inspiration, it is in all of us, even those not with us.

Friday, 3 October 2008

We made it in one!

Helen and I were both up at 5:30am this morning to ready ourselves for our Journey to Leeds.
She came to my house and we were met instantly by the driver I had booked for the journey.
He is called Ian and he was early which was good and very professional.
We had a very good journey and didn't have any of the traffic jams Ian thought we would have.
We stopped at a service station and had breakfast. We witnessed a group of ladies in fancy dress. They were travelling to Blackpool and had dressed a lady as Andy Pandy.....come on....admit it....your old enough to remember him!!! The girls were all dressed as Looby Loo!I asked them if I could have a picture for the blog and they agreed. Apparently they are a bowling club and dressed up once a year, they didn't tell the lady who was Andy Pandy who they were dressing up as until the day of the event.

They were full of fun and made our morning.

I hope you have a wonderful time girls.....and I hope you like the picture!
We then left and travelled to Leeds...we ended up going in the loop around the city centre as Ian missed the turning for the hotel. It wasn'this fault, the turning is right around the corner and unless you know it is there, you would miss it.
We got to our room...which is lovely, dropped off the cases and then went for a wander around the centre. It is so cold (((((bbbrrrrr))))))!!
We had a coffee and a biscuit and then back to the hotel were Hellen settled back and relaxed.
Iam looking forward to tomorrow as lasts years meeting was very positive.
I will detail the meeting tomorrow.

Thursday, 2 October 2008

More good news

I have been looking at my hair over the past few days and it seems to be growing back.
I have had Alopecia for 5 years and have been wearing wigs for a while now.
I know that Alopecia is an auto immune disease, The immune system attacks itself.
I have found that since I have been getting good results with the chemo, my hair has been growing back.
It seems it is now targeting the tumor and not itself. This would be great if it is what is happening. I am going to monitor it and if it is growing back, well.... I may be wig-less for Christmas!!
I am taking my children out to eat tonight to celebrate my good news and will continue packing tonight as I am off to Leeds tomorrow.

Wednesday, 1 October 2008

Kieran back to school.

Kieran went back to school today after a minor protest this morning. It turns out he didn't want to go because he thought he would be asked to draw a picture with charcoal.
He has dyspraxia as well as autism. Dyspraxia is the communication of the brain and the fine motor skills. It is a little like dyslexia, the is a gap between the signal from the brain to the hands and feet.

He stayed in school all day and when he came home, told me he had had a lovely day.

I went to his old school for a coffee morning. It was good to see the parents and carers. My team mates met up this afternoon as a surprise and I wasn't there. I couldn't go because I had to meet Kieran from his bus. Siobhan was at college all day. I managed to get away at around 6 O'clock, by then most of the guys had gone. It was a lovely thought and it was to celebrate my success with the treatment in Germany.

A Big Thank you Guys, We shall arrange another one !!!!

I missed my call to Dr Maria again. I was supposed to call her this morning. I saw the calendar this afternoon. I will call tomorrow and make another one. I want to tell her about the treatment and how the mistletoe is working so well. I have got my hair back!!! I may be able to lose the wigs in a couple of months. Weird..... but I do think a lot of it is the mistletoe and the fact that the chemo is killing off the tumor and my immune system has changed its target.